Who has time to keep up with a blog? I need another me to keep up with myself. This is going to be all over the place like everything in my life and my head so I apologize in advance. It has been a while since I wrote last. So much progress has been made.
Dominick has changed so much and made so many strides. He now waves correctly to others. Before he would wave with his hand facing him own face instead of away towards others. He is asking for items more frequently and with more descriptives. He still has to be prompted to do so.
He is starting to say "I want" but has to be prompted. He gets confused easily when trying to ask for something. He tends to say "more please" to get something. Trying to get him to ask for either for example a red car or a blue truck he might say "want more please red" or "blue truck please" or he might get it right and say "I want red car". It is amazing that we are getting him to pick out an object from different options. Pronouns.... AHHHHHH! You and I. You want, I want. I will prompt him, "Say please" or "Say I want ..." and he responds with, "Say please" or "Say I want...” It confuses him sometimes and breaks my heart to see him get frustrated when he is trying to get it right and he just doesn't know what he is supposed to say to just get the damn red car or blue ball or piece of candy from me.
Food... Most toddlers can be temperamental eaters. Go through fazes of eating everything to not wanting to eat anything. Dominick goes through these phases also but on a whole other level. He used to eat fish sticks but wont anymore. He will sometimes eat chicken nuggets but only the Tyson dinosaur ones and McDonald's. Will not eat chicken tenders or any other chicken of any kind. He likes grilled cheese but not from a restaurant. Only ones we make at home, SOMETIMES. Loves Taco bell crunchy tacos. He eats them upside down. Will not eat any other tacos even if I make them with the Taco bell brand mix. We have to go to Taco bell and get them. They have to have the wrapper. Loves cereal some days. Loves Dunkin Doughnuts cinnamon munchkins. Not doughnuts just munchkins. BACON BACON BACON! Makes him gag from time to time but will continue to eat it no matter what. He will eat apple slices and grapes sometimes. He just stopped eating the Gerber toddler chicken mashed potatoes and carrots meal. The ONE balanced meal he would eat he won’t eat anymore.
Marty and I are starting to hit a major wall with the whole food issue. Terror, fear, frustration are constant when it comes time to feed Dominick. I want someone to walk in and give us the magic answer and cure to the whole food issue. When I see other children eat or hear other parents talk about how great an eater their child is I feel such envy. When others tell me how "It is just a phase" and "Oh my little one just started eating again he will soon" I want to scream because they just don't understand how most food makes him gag and he doesn't want to try to eat anything new. I wish I knew if it was a texture thing or a color thing or a smell thing.
So many questions I have he may be able to answer one day when he has the language skills but for now it is a guessing game.
He has dropped a lot of his repetitive behaviors and picked up a few new ones. He really wants to try to have a conversation with me. He uses a few words mixed in with his jibber jabber and really is trying to have a conversation with me. It makes me feel such joy that he is wanting to try to reach out and communicate and so sad at the same time because he has such a large vocabulary now and not a clue how to use it. It is kind of like having a garage full of tools and not knowing the first thing how to fix a car or build a bird house. I know how to use a wrench and how to use a saw and how to use a drill. I just don't know how to use them all together to build one thing or fix something.
Dominick is becoming one very strong little boy. In just the past month I have had a black eye and a split lip. I am starting to become a little scared of how strong and how large his tantrums are going to be as he gets older. I am great at helping him control them and finding new ways for him to get in control. I literally get on the ground with him and use my arms, legs, well my whole body to get him under control. He doesn't just hit and kick. His whole body goes out of control and he thrashes with such a terrifying force. I can get him out of it pretty fast. I squeeze him and he likes it. I can sometimes predict an "episode" coming on and can get him to squeeze before it becomes a full blown "episode". We have started using breathing to help calm him down. I get him to look me in the face and take deep breaths with him. It used to bother me when these melt downs happened in public but I just am becoming numb to people’s reactions to it. I care more about helping my child than what people are seeing or thinking.
The past two weeks have been really hard. My sister described it best. It feels like a lead blanket is on me and I can't get up. I am allowing myself to feel down. I am giving myself permission to kick myself. I am giving myself permission to have a pity party. That is why I am writing this now. That is why I started this. This is my release. Well not that that has been said and is done I can get back to being super mom. Thanks for allowing me to vent.
Tuesday, October 26, 2010
Monday, June 28, 2010
Would You Rather...?
Do you remember the game "Would You Rather?"
Would you rather "Bite the curb and get kicked in the back of the head -OR- get a paper cut on your eyeball?"
Would you rather "Chew shards of broken glass -OR- sit on a lighted barbecue grill?"
Would you rather "Immerse your naked body in a bathtub of cockroaches -OR- dive naked head first into a pool of chewing tobacco spit?"
This old game I used to play just popped in my head recently. I remember playing "Would You Rather?" a lot when I was younger even up into my adult years. Just a game to make you think what awful, crappy choice would you make between two awful crappy options. What are you limits? What are you capable of and not capable of? What can you bare and endure? What makes you think you can actually do it? CAN YOU DO IT?
Back in the beginning of May Marty, Dominick, Hailey and I had our pictures taken at a beautiful spot called The Dairy Barn by an absolutely amazing and talented photographer (Michelle, Angel Eye Portraits). We have some of the most beautiful pictures taken. At one point Hailey was being eaten by ants. She took her shoes off and was covered with them. She got them off and was okay. Just a few bites. But enough to make her upset and feel pain. Later that night giving Dominick a bath I started washing his legs and feet. I was shocked to see all of the bites all over his legs toes and feet. He was covered with bites. The whole time at the Dairy Barn he did not complain, cry out in pain or act in any way to indicate to us that he was being bitten by ants.
After the shock of seeing this my mind started racing. "Why didn't he cry?" "Why didn't he let me know he was hurting?" "Wait does he hurt?" "Does he feel pain?" Now I am thinking back. Dominick has bruises and bumps all over the place. He runs into walls, he falls down, he thrashes when he is having a fit or tantrum and doesn't stop until he hurls himself into something, he has cut himself a couple of times on the pavement, etc etc etc... And most of the time he never cries. The only time he cries is when he sees me react to him falling or getting hurt. I run to him with my worried, panic face turned on with my arms open to him saying, "My Poor Baby". That is when he turns on the tears.
NO NO NO. Not this. Please don't let it be that he can't feel pain. Wait, Would I rather have him feel pain or not feel pain? Think about it. To have your child not feel any pain. But he could start with self destructive and self harming behaviors. He would have zero clue that he was harming himself. He sometimes still hits his head on the couch or even the hard floor. How would I know if he was physically hurt? What if a bone is broken and he has no idea because he can't feel it?
I went to his Pediatrician with this. Dominick does feel pain. Whew, what a relief! BUT... He is not able to communicate to me when and if he is hurting. Maybe this is something that will be able to change in the future but for now I have to be even more critical and even more vigilant than ever. My son could be hurting and he does not have the words or the behavior skills or the capability to let me know it. So in a sense he is sitting there suffering silently in his own mind.
On top of this Dominick is starting to show some sensory issues. He has a problem with sounds sometimes. I have no idea how these sounds affect him. They could cause him to see something unpleasant, or smell something, or hear something or feel something. We just don't know. Sometimes he just plugs his ears with his fingers and works his own way through it. I most of the time can pick him up, squeeze him, rock him and rub his back and that makes it better for him. When he is feeling stressed and out of sorts, something I can pick up on that is harder for others to tell, I lay him on the couch, put pillows over his body and a heavy blanket over him body. He likes it when I press down on him. It makes him so calm. He hums when I do this. He gets a big grin on his face.
For his birthday he got a trampoline. Nothing too big. It is just 7 feet in diameter and has a 100 pound limit so no bouncing for myself or Marty. He loves to jump and bounce. Dominick has become quite a pro at it. Trampolines have been a huge part of his therapy so I am all about using toys to help him along.
I am looking into Equine Therapy, riding horses, for Dominick. We went to his spring fling party for all the kids in the Special Needs / Early Intervention programs in Fort Mill Schools. They had some horses there that are specially trained for therapy. I took Dominick over to them. He walked up the ramp to the horse. We put a helmet on him. One of the trainers picked up Dominick to put him on the horse. He began kicking and screaming. The trainer said to trust her that he would be fine. WHAT? He was freaking out. The horse didn't react. He didn't flinch. He was so calm. She put Dominick on the saddle and he just stopped. Dominick had a calm over him I have never seen before. He was so happy. He held on to the horn of the saddle and two of the trainers / therapists took him off on the horse. It was amazing. I need to get him a pony.
Therapy is still going well. We have a new speech therapist and she is amazing. Dominick loves her and works great with her. Our in-home therapist from Easter Seals Ashley is engaged and we are so happy for her. She better never leave us. I will have to stalk her. Dominick started Summer School or as they want us to call it Extended Year. I like all of his new teachers. It is only 1 1/2 hours a day and only for a month. He starts back to school on Marty's birthday August 18th. I can't wait for his regular school year to start and for him to get into that routine.
Would you rather "Bite the curb and get kicked in the back of the head -OR- get a paper cut on your eyeball?"
Would you rather "Chew shards of broken glass -OR- sit on a lighted barbecue grill?"
Would you rather "Immerse your naked body in a bathtub of cockroaches -OR- dive naked head first into a pool of chewing tobacco spit?"
This old game I used to play just popped in my head recently. I remember playing "Would You Rather?" a lot when I was younger even up into my adult years. Just a game to make you think what awful, crappy choice would you make between two awful crappy options. What are you limits? What are you capable of and not capable of? What can you bare and endure? What makes you think you can actually do it? CAN YOU DO IT?
Back in the beginning of May Marty, Dominick, Hailey and I had our pictures taken at a beautiful spot called The Dairy Barn by an absolutely amazing and talented photographer (Michelle, Angel Eye Portraits). We have some of the most beautiful pictures taken. At one point Hailey was being eaten by ants. She took her shoes off and was covered with them. She got them off and was okay. Just a few bites. But enough to make her upset and feel pain. Later that night giving Dominick a bath I started washing his legs and feet. I was shocked to see all of the bites all over his legs toes and feet. He was covered with bites. The whole time at the Dairy Barn he did not complain, cry out in pain or act in any way to indicate to us that he was being bitten by ants.
After the shock of seeing this my mind started racing. "Why didn't he cry?" "Why didn't he let me know he was hurting?" "Wait does he hurt?" "Does he feel pain?" Now I am thinking back. Dominick has bruises and bumps all over the place. He runs into walls, he falls down, he thrashes when he is having a fit or tantrum and doesn't stop until he hurls himself into something, he has cut himself a couple of times on the pavement, etc etc etc... And most of the time he never cries. The only time he cries is when he sees me react to him falling or getting hurt. I run to him with my worried, panic face turned on with my arms open to him saying, "My Poor Baby". That is when he turns on the tears.
NO NO NO. Not this. Please don't let it be that he can't feel pain. Wait, Would I rather have him feel pain or not feel pain? Think about it. To have your child not feel any pain. But he could start with self destructive and self harming behaviors. He would have zero clue that he was harming himself. He sometimes still hits his head on the couch or even the hard floor. How would I know if he was physically hurt? What if a bone is broken and he has no idea because he can't feel it?
I went to his Pediatrician with this. Dominick does feel pain. Whew, what a relief! BUT... He is not able to communicate to me when and if he is hurting. Maybe this is something that will be able to change in the future but for now I have to be even more critical and even more vigilant than ever. My son could be hurting and he does not have the words or the behavior skills or the capability to let me know it. So in a sense he is sitting there suffering silently in his own mind.
On top of this Dominick is starting to show some sensory issues. He has a problem with sounds sometimes. I have no idea how these sounds affect him. They could cause him to see something unpleasant, or smell something, or hear something or feel something. We just don't know. Sometimes he just plugs his ears with his fingers and works his own way through it. I most of the time can pick him up, squeeze him, rock him and rub his back and that makes it better for him. When he is feeling stressed and out of sorts, something I can pick up on that is harder for others to tell, I lay him on the couch, put pillows over his body and a heavy blanket over him body. He likes it when I press down on him. It makes him so calm. He hums when I do this. He gets a big grin on his face.
For his birthday he got a trampoline. Nothing too big. It is just 7 feet in diameter and has a 100 pound limit so no bouncing for myself or Marty. He loves to jump and bounce. Dominick has become quite a pro at it. Trampolines have been a huge part of his therapy so I am all about using toys to help him along.
I am looking into Equine Therapy, riding horses, for Dominick. We went to his spring fling party for all the kids in the Special Needs / Early Intervention programs in Fort Mill Schools. They had some horses there that are specially trained for therapy. I took Dominick over to them. He walked up the ramp to the horse. We put a helmet on him. One of the trainers picked up Dominick to put him on the horse. He began kicking and screaming. The trainer said to trust her that he would be fine. WHAT? He was freaking out. The horse didn't react. He didn't flinch. He was so calm. She put Dominick on the saddle and he just stopped. Dominick had a calm over him I have never seen before. He was so happy. He held on to the horn of the saddle and two of the trainers / therapists took him off on the horse. It was amazing. I need to get him a pony.
Therapy is still going well. We have a new speech therapist and she is amazing. Dominick loves her and works great with her. Our in-home therapist from Easter Seals Ashley is engaged and we are so happy for her. She better never leave us. I will have to stalk her. Dominick started Summer School or as they want us to call it Extended Year. I like all of his new teachers. It is only 1 1/2 hours a day and only for a month. He starts back to school on Marty's birthday August 18th. I can't wait for his regular school year to start and for him to get into that routine.
Monday, June 7, 2010
"Dumbing Down" Dominick
Dominick has turned three. At age three Baby Net, the South Carolina agency for early intervention, stops their assistance and services. That means no more in home therapy with Ashley from the Easter Seals, no more financial assistance with his speech and occupational therapy, no more financial assistance with any ABA therapy workshops and any other special needs services. What do we do now that we have a three year old? Who helps us?
Ashley has worked extremely hard with us to file extensions for services. We do not want to lose Ashley. She has played the largest lead role in Dominick getting the help he needs and in guiding me to what I need to do and where to go for help and services. She helped us file for TEFRA which will help us pay for all of his therapies. She helped me file for the extension for her services in working in our home with us. Luckily the day of his birthday we found out that we did receive approval for extension of benefits with Ashley. We are still waiting to hear from SC Dept. of Health and Human Services Disability and Special Services for his TEFRA approval. This could take up to six months.
Dominick is now categorized as "Low Risk" for Intervention Services. These children are the first to get cut from funding. GREAT! We have had to have three different evaluations in the past couple of months. During the evaluations I found myself praying he wouldn’t do that well during them. Great, now I want to “Dumb Down” my kid. I don’t want him to do too well. If he is doing better, if he progresses too much, if he is benefiting from his therapy he might run the chance of losing it. Then he could regress and we would lose all of the progress he has made.
When we first started this journey with Dominick’s Autism I was scared of him not getting better, not talking, not responding to me, not hugging me, not being able to learn, not being able to interact with other people, not being able to say my name or that he loves me, not being able to play sports, not being able to one day have a job and a family of his own. So how do I reconcile the fact that I now have replaced all of these fears with the new ones? Dominick is talking, hugging, kissing, loving, asking for things, playing with other kids, looking me in the eye and talking to me. All of those fears are fading. Now I am so scared because he is doing too well? WHAT? I can’t be happy with his progress because it could hurt him. It could cause him to lose the help he receives.
Dominick has started going to Sugar Creek Elementary School. He was able to attend the last week of school. He will be starting summer school on June 28th. He has Speech and Occupational Therapists. He has a Clinical Psychologist and a Behavioral Specialist. He attends Monday through Thursday for three hours a day.
His first day was pure HELL for me. The drive there was torture. I just wanted to turn the car around and take him back home. We parked the Jeep and put his backpack on him. He was so happy with the backpack on. Grin from ear to ear.
They allowed us to walk him in on his first day. We walked through the halls. Kids are everywhere. Could he get lost in all the chaos of the morning hustle? Would he know where to go if he got lost? He would be so scared and alone. Would one of the older kids make fun of him or bully him? We walked into his classroom. He takes off his backpack and puts it in his cubby which has his name on it. Is he going to miss me or cry for me? Will he be sad all day? NOPE, NOPE & MORE NOPE!
He is looking around and is curious but still is staying close to me. I realize it is time for us to start leaving and I start to feel a flush of panic. I scoop my boy in my arms and squeeze him tight. I do not want to let him go. I kiss him and tell him I will see him very soon and Momma loves him very very much. He is now starting to understand that I am leaving him and he starts to grab me tighter and won’t let me go. I realize I made a huge mistake in telling him I was leaving. It was my selfishness. I forgot that this isn’t about me. It is about Dominick and what he needs and I should have made it easier for him. But it is time for me to cut the umbilical cord. Ms. Morrill takes him from me. He starts to scream for me and tries to get from her and is reaching for me. She grabs a toy car and starts to get his attention. He is calming down. He starts playing. Surprise… He was just fine.
I couldn’t wait for 10:45am. I got to the school at 10:30. I watched the door to open without blinking. Kids were all over the playground. All the sudden I see him. He was holding one of his teacher’s hands. He looked so happy. He saw me and said MOMMY. I grabbed him and held him tighter than I ever have. My sweet little Monkey looked at me and said,”Back Pack”.
Ashley has worked extremely hard with us to file extensions for services. We do not want to lose Ashley. She has played the largest lead role in Dominick getting the help he needs and in guiding me to what I need to do and where to go for help and services. She helped us file for TEFRA which will help us pay for all of his therapies. She helped me file for the extension for her services in working in our home with us. Luckily the day of his birthday we found out that we did receive approval for extension of benefits with Ashley. We are still waiting to hear from SC Dept. of Health and Human Services Disability and Special Services for his TEFRA approval. This could take up to six months.
Dominick is now categorized as "Low Risk" for Intervention Services. These children are the first to get cut from funding. GREAT! We have had to have three different evaluations in the past couple of months. During the evaluations I found myself praying he wouldn’t do that well during them. Great, now I want to “Dumb Down” my kid. I don’t want him to do too well. If he is doing better, if he progresses too much, if he is benefiting from his therapy he might run the chance of losing it. Then he could regress and we would lose all of the progress he has made.
When we first started this journey with Dominick’s Autism I was scared of him not getting better, not talking, not responding to me, not hugging me, not being able to learn, not being able to interact with other people, not being able to say my name or that he loves me, not being able to play sports, not being able to one day have a job and a family of his own. So how do I reconcile the fact that I now have replaced all of these fears with the new ones? Dominick is talking, hugging, kissing, loving, asking for things, playing with other kids, looking me in the eye and talking to me. All of those fears are fading. Now I am so scared because he is doing too well? WHAT? I can’t be happy with his progress because it could hurt him. It could cause him to lose the help he receives.
Dominick has started going to Sugar Creek Elementary School. He was able to attend the last week of school. He will be starting summer school on June 28th. He has Speech and Occupational Therapists. He has a Clinical Psychologist and a Behavioral Specialist. He attends Monday through Thursday for three hours a day.
His first day was pure HELL for me. The drive there was torture. I just wanted to turn the car around and take him back home. We parked the Jeep and put his backpack on him. He was so happy with the backpack on. Grin from ear to ear.
They allowed us to walk him in on his first day. We walked through the halls. Kids are everywhere. Could he get lost in all the chaos of the morning hustle? Would he know where to go if he got lost? He would be so scared and alone. Would one of the older kids make fun of him or bully him? We walked into his classroom. He takes off his backpack and puts it in his cubby which has his name on it. Is he going to miss me or cry for me? Will he be sad all day? NOPE, NOPE & MORE NOPE!
He is looking around and is curious but still is staying close to me. I realize it is time for us to start leaving and I start to feel a flush of panic. I scoop my boy in my arms and squeeze him tight. I do not want to let him go. I kiss him and tell him I will see him very soon and Momma loves him very very much. He is now starting to understand that I am leaving him and he starts to grab me tighter and won’t let me go. I realize I made a huge mistake in telling him I was leaving. It was my selfishness. I forgot that this isn’t about me. It is about Dominick and what he needs and I should have made it easier for him. But it is time for me to cut the umbilical cord. Ms. Morrill takes him from me. He starts to scream for me and tries to get from her and is reaching for me. She grabs a toy car and starts to get his attention. He is calming down. He starts playing. Surprise… He was just fine.
I couldn’t wait for 10:45am. I got to the school at 10:30. I watched the door to open without blinking. Kids were all over the playground. All the sudden I see him. He was holding one of his teacher’s hands. He looked so happy. He saw me and said MOMMY. I grabbed him and held him tighter than I ever have. My sweet little Monkey looked at me and said,”Back Pack”.
Tuesday, May 18, 2010
"I THINK PEE WEE IS AUTISTIC", SAID MOM!
We went to Myrtle Beach back in April. My mom, my sister Shannon, my nephew Sage, Dominick and I. I got a great place at The Ocean Reef. We had a three bedroom condo with a great view of the ocean. There was an outdoor kid’s water park with an Aztec theme. There was also an indoor kid’s water park with a splash pool, water buckets that dump water, a lazy river, indoor pool and three hot tubs. All were heated. There is also a heated outdoor pool.
We played on the beach every day. Dominick stayed away from the ocean until the last two days. Then it was hard to keep him away from the water. We played in the sand and tried to make sand castles but he likes to step on them so it was a little difficult. Shannon and Sage left on Thursday. Marty came down and joined us on Thursday.
Shannon and I took the boys to Broadway to go ride the old Pavilion rides one day. They have the bungee trampolines. You put on a harness that is strapped to bungee cords on each hip. Then you jump up and down on a trampoline. Shannon and I decided to let Dominick and Sage give it a shot. They LOVED it. Sage was trying to back flips no problem. Dominick had a grin on his face ear to ear. He was very upset when he had to get off. We then rode some of the old Pavilion rides. Spinning tea cups, pirate ship, merry go round, caterpillar, kids motorcycle ride and so on. We decided to let them do the bungee trampoline again. Dominick was really going to town this time. Sage and Dominick were both jumping as high as they could. And loving every second of it. It was a great day.
My mom has a little Sheltie named Pee Wee. He is her baby, my little brother and a human in a dog fur coat. She left Pee Wee with my aunt Verna. We were sitting out on the balcony while she was calling to check on her favorite child, Pee Wee. My mom requested that my aunt hold the phone up to Pee Wee's ears so that he could hear his Momma speak. She really missed her baby and I am so happy that she has that little dog, NOT HUMAN BUT A DOG, to keep her company.
My mom got to spend a lot of time with Dominick and learning about his Autism behaviors and symptoms. She in the past thought at times that Dominick just didn't like her. I think she now understands that it is his Autism and not her. Mom and Dominick made up their own little games like making your arms go in circles. He would do it, then she would do it and it would make him laugh. After I got finished explaining to my Mom all about Dominick and his different behaviors and symptoms she looked at me and with the most shocked and concerned face she says, "You know. I think Pee Wee has Autism." I almost wet myself I started laughing so hard. I love my Mom.
We played on the beach every day. Dominick stayed away from the ocean until the last two days. Then it was hard to keep him away from the water. We played in the sand and tried to make sand castles but he likes to step on them so it was a little difficult. Shannon and Sage left on Thursday. Marty came down and joined us on Thursday.
Shannon and I took the boys to Broadway to go ride the old Pavilion rides one day. They have the bungee trampolines. You put on a harness that is strapped to bungee cords on each hip. Then you jump up and down on a trampoline. Shannon and I decided to let Dominick and Sage give it a shot. They LOVED it. Sage was trying to back flips no problem. Dominick had a grin on his face ear to ear. He was very upset when he had to get off. We then rode some of the old Pavilion rides. Spinning tea cups, pirate ship, merry go round, caterpillar, kids motorcycle ride and so on. We decided to let them do the bungee trampoline again. Dominick was really going to town this time. Sage and Dominick were both jumping as high as they could. And loving every second of it. It was a great day.
My mom has a little Sheltie named Pee Wee. He is her baby, my little brother and a human in a dog fur coat. She left Pee Wee with my aunt Verna. We were sitting out on the balcony while she was calling to check on her favorite child, Pee Wee. My mom requested that my aunt hold the phone up to Pee Wee's ears so that he could hear his Momma speak. She really missed her baby and I am so happy that she has that little dog, NOT HUMAN BUT A DOG, to keep her company.
My mom got to spend a lot of time with Dominick and learning about his Autism behaviors and symptoms. She in the past thought at times that Dominick just didn't like her. I think she now understands that it is his Autism and not her. Mom and Dominick made up their own little games like making your arms go in circles. He would do it, then she would do it and it would make him laugh. After I got finished explaining to my Mom all about Dominick and his different behaviors and symptoms she looked at me and with the most shocked and concerned face she says, "You know. I think Pee Wee has Autism." I almost wet myself I started laughing so hard. I love my Mom.
Thursday, April 8, 2010
Get Comfy! This One Might Take Awhile!
Sorry it has been so long since my last update. I would always take full advantage of my insomnia to post an update to this blog. Now days I don’t even have time to indulge my insomnia. Dominick is keeping me very busy. So let me jump right into it.
Dominick now has a Speech Therapist, Heather, who he sees on Wednesday and Friday mornings for 30 minute sessions. He sees an Occupational Therapist, Anissa, on Monday for an hour session. Ashley, our in home therapist from the Easter Seals, still comes on Wednesday for an hour to work with us. The ST and OT is less than a half mile away. Tega Cay Speaks. I should really start playing the lottery more often considering how very lucky we have been with lining up all his therapy. Ashley is such a blessing. Without her I would be sooooooo lost.
Dominick has been making such tremendous progress. Everyone working with him is amazed by his progress. I keep a daily journal of some of his accomplishments.
March 1: Speech Therapy, Dominick went into the gym area and got a sucker, he remembered where they were. He took it into the speech room and brought it to me and said, “Open” “I want sucker”. Both Heather and I were stunned.
March 3: Woke up with Dominick in my bed saying, “I wuve you!” “I pee pee” “Pee pee Potty” I took him to his potty and after a few minutes I almost gave up thinking it was too good to be true. Then the potty started to sing the potty song (Once you go to the bathroom it has a temp sensor on it so it will sing) I think it scared him like he had done something wrong. I reassured him it was okay to go potty.
March 7: Dominick took bubbles to Shannon and said, “Open”
March 8: Dominick participated in about half of the activities at Gymboree. He did sing the bubble song and remembered the actions and movements that go with the song. He has not heard it in over 6 months. He made eye contact with several children and tried to talk to two different children.
March 10: Dominick woke up, walked into living room, picked up my water bottle, drank from it and said, “It is so good, Nummy!” While watching a DVD, I put Dominick on his potty in front of TV and gave him my water bottle. He all the sudden while watching the DVD said, “Oh look.” “ A drum.”
March 14: Bought Dominick a new bath toy. When I showed it to him he asked, “What is that?” With perfect diction!
March 16: Dominick is not feeling well. Very cranky today. Not wanting to make any decisions. Not wanting to participate in any activities or answer any questions. Had to cancel hearing evaluation.
March 18: Dominick is now using, “Stop it” and “No” more. It is exciting that he can now communicate to me when he doesn’t like something.
March 22: We got to OT before Anissa. When she got there Dominick looked at her started to walk into gym room and said to her, “Come On, Let’s Go”. The psychologist opened the door to the gym and I heard Dominick say, “Hello”. Everyone was just laughing at Dominick while watching him in the gym. He is such a HAM today.
March 23: Dominick and I went to swim class. Dominick will not blow bubbles in the water. He did great kicking. He was able to climb out of the pool by himself. Put him in the daycare at the gym. He did just fine. After story time today, just before his nap, he sat up and with each hand he pretended like they were puppets and had them talking to each other. Right hand: Hello Left hand: Hello Right hand: How are you? Left hand: I am fine. How are you? And on and on. It was HILLARIOUS!
March 24: Heather, the speech therapist, did a mini evaluation on Dominick today. She said she is starting to run out of material for him. Says he is progressing much faster than anticipated. Ashley and I worked on getting him to ask for objects by using more descriptions such as color. Ashley says he is doing so great because of all the work I am doing for him. “Patting myself on the back!”
March 26: Dominick is saying, “Mommy” “There’s Mommy” “Hi Mommy” “I Wuve You Mommy”, every day several times a day!
March 28: Went to Hailey’s. Dominick and Kaitlin played together. They tossed the ball back and forth. He even tried to communicate with her. He cried when it was time to leave. Went over to Marcella’s house. He showed off! Dancing and talking. MR. PERSONALITY! Dominick has started saying “Thank you” and “Thanks”.
March 29: According to Anissa Dominick is an “A Type” personality. Meaning he will be very detailed and a great organizer. He is going to be a perfectionist. There is a little girl, Ashlyn, around 10 years old who sees Anissa after Dominick. She is severely autistic. She does not hug her parents and rarely talks or looks at people. Last week she took her nurses glasses and put them on me. She looked me right in the eye. She has tremors and bad ticks. They stopped when she was looking me in the eye. I told her thank you and she got excited and clapped. Then I asked her for “High 5” and she gave me two “High 5’s”. This week when Dominick came out of the gym with Anissa, Ashlyn looked at Dominick and said, “My baby”. She saw he had a monkey on his shirt and she said, “My Monkey”. She touched his shirt and grabbed his hand. They sat in the chairs beside each other. Dominick would look at her and she would look at him too. Dominick tried to talk to her in his Gibber Gabber. They just sat there and held each other’s hand. I am blown away by the connection Dominick and I have both made with her. So is Anissa.
April 1: Went swimming with Shannon and Sage. Sage swam up to Dominick and me. He grabbed Dominick’s arm. Dominick said, “Sage! GO AWAY!” He then tried to either push or punch at Sage. This is great progress! Not excited about him wanting to try to harm Sage but excited because Dominick is trying to communicate more about what he likes and dislikes.
April 4: Easter Egg hunt! While watching TV, Dominick started copying the Progressive Insurance commercial. He knew practically all the words and even used dramatic expressions. I truly believe he has photographic memory. I got video of it. Hilarious. Dominick is dancing to Kyle’s radio show. So cute. Loves dancing with his Mommy!
April 7: Ashley is back from vacation. Yay! Dominick is not having a great, good or even okay day. Not wanting to participate. Regressing and going into his little world again. Doing some of his repetitive behaviors and sounds. We are going to have bad days. They SUCK!
So now you are caught up with Dominick. Now for me! I still have days when I feel like “SUPER MOM”. Able to clean the dirtiest of diapers in a single swipe, able to clean all and organize all and do all and be all and blah blah blah…
Then there are the days when I can’t do anything right. I can’t get task completed. I have 5 million tasks to get done. I am not doing enough to help my son. I am the crappiest wife in the world. I am an awful daughter and sister and friend and mother. I miss my daughter Hailey and I am not doing enough for her. I can’t return phone calls to anyone. I can’t even check my email.
It can take its toll out on you. I need an extra 5 hours in the day! I need a clone. I get no sleep usually. I miss being able to have insomnia and getting stuff done while everyone else sleeps. I have learned I have to make time for me. I have to take care of me! If I don’t I will be no good to Dominick. I also have learned that I need to ask for help. I can’t do this alone.
All of this can add a whole lot of strain to a marriage. There is just not enough time in the day. You have to make time to spend with each other. We had to make time to do something with each other that doesn’t involve ASD or Dominick. Marty and I are taking Shag dance lessons. We get to have a date on Friday nights. We get to go out and laugh. I usually only get to see him 2 maybe 3 nights a week. The second he gets home from work on Wednesday and Thursday I walk out the door. I work on some Friday and all Saturday nights. On Sunday I am so exhausted I don’t want to do anything. Communication is usually only a few words on the phone. All of this can make me feel alone in this sometimes. We are getting through it all! It just takes work!
My dad is the greatest!!! He calls me daily to ask me questions, get updates about Dominick, tell me about something new he heard about ASD, mails me articles from the paper, comes to Dominick’s therapy sessions and on and on and on. I am so proud of him. He told me he just wants to be able to talk to his grandson. He wants to know how to communicate with him and understand what it is like for Dominick. WOW!
On April 1 I put blue string lights up at Lynn’s for Autism Awareness month. Bill and Kitten allowed me to tell everyone there about my story and about ASD. I have been blown away from the stories others have of their own experiences with Autism. Their children, grandchildren, nieces, nephews and friends. I had no idea it has touched so many of these people I see every week. So many people came up to me after to give me a hug, a word of thanks because they had no idea how big of a crisis it has become, to tell me about their loved one, a word of encouragement and a whole lot of praise for being a wonderful mom. All of these people from Lynn’s are such a big part of my life. I see them every week. They make me smile and laugh every day I see them. We tell each other jokes and stories. I have become so attached to them all. I look forward to seeing them. I love them and they are in my heart always.
I have some items to sale for Autism Awareness. Car and fridge magnets, pins, decals, bracelets and key and card chains. Crickett has been helping me sell them at Lynn’s. She is such a sweet heart. If anyone would like to purchase anything please contact me. Or if you would just like to make a donation I can help point you in the right direction. The family-run MOSI Foundation will match your contribution up to $1000.00 for a limited time. This is who I plan on making my contribution to. With you help we will be able to fund more research for these amazing kids.
I want to post someone else’s blog post which sums up everything I want you all to know about Autism Awareness, me and my amazing, funny, brilliant son Dominick.
BE AWARE, BY: BOTH HANDS AND A FLASHLIGHT
Be aware that if you’ve met one autistic person, you’ve met one autistic person.
Be aware that just because people don’t talk doesn’t mean they can’t communicate. And it certainly doesn’t mean they aren’t intelligent.
Be aware that sometimes our kids can’t help it. They are trying, incredibly hard.
Be aware that an open mind and a closed mouth are sometimes the best response to a situation.
Be aware that our sons and daughters are awesome.
Be aware that we will kick the butts of anyone who says otherwise.
Be aware that many public figures and organizations talking about autism don’t necessarily speak for a whole lot of us.
Be aware that a lot of the people who talk the most also have the biggest agendas and the most to profit from.
Be aware that if a parent is trying to do something with a child who is melting down in public, pause a minute, postpone judgment, and reflect on whether that child and parent are facing challenges you do not understand.
Be aware that price gouging on materials and equipment infuriates us. We know some companies do it because we have to have what they sell.
But be aware that we are now a people’s movement, and the power is shifting to us. We will find new solutions, and they will be better because we made them. And we won’t mourn when unethical companies go out of business.
Be aware that we are loyal and faithful to those who support us and unforgiving in our pursuits against those who take advantage of our children and us. And we have very, very long memories.
Be aware that we tend to be very fired up about our children and their needs, and we aren’t sorry about it.
Be aware that if anyone messes with one child, they mess with all of us.
Be aware that we are unapologetic about getting funding for special education, disability services, or other supports. If people want to argue against these programs, that’s their right. But be aware that if anyone says our kids aren’t ‘worth it’, rather than debate them on the merits or lack thereof, we’ll just tell them to go to hell.
Be aware that we are not asking for ’special rights’, which is just code language for discrimination anyway. We are working to give our children an equal chance at achieving their potential as any other child. When discussions turn toward whether a child is ‘deserving’ of such help, all children suffer, and we sink toward a moral bankruptcy that they will inherit from us.
Be aware that our children are not broken, damaged, or lost.
Be aware that the words we use matter.
Be aware that you are talking about our children – my children. And be aware that many of them take those words literally and personally.
Be aware that we may sound angry, but that’s because we are fighting for our children, and we fight this battle for them every day.
Be aware that anyone with a soul would fight for these things for their own child if they were in our shoes.
Be aware that all we want is for our children to have a chance to be who they were born to be – just like anyone else does for their own kids.
Be aware that there are a multitude of autistic adults trying to live out their dreams and aspirations. It’s not just about children; adults need services and support too.
Be aware that we are often very tired.
Be aware that we expect great things from our children, and they often humble us with how far they exceed all expectations.
Be aware that we will never give up fighting for them.
And be aware that I still wouldn’t trade my life for anything.
BY: BOTH HANDS AND A FLASHLIGHT
Autistic people do not judge, do not play mind games, do not lie. Maybe we can learn some things from them.
Dominick now has a Speech Therapist, Heather, who he sees on Wednesday and Friday mornings for 30 minute sessions. He sees an Occupational Therapist, Anissa, on Monday for an hour session. Ashley, our in home therapist from the Easter Seals, still comes on Wednesday for an hour to work with us. The ST and OT is less than a half mile away. Tega Cay Speaks. I should really start playing the lottery more often considering how very lucky we have been with lining up all his therapy. Ashley is such a blessing. Without her I would be sooooooo lost.
Dominick has been making such tremendous progress. Everyone working with him is amazed by his progress. I keep a daily journal of some of his accomplishments.
March 1: Speech Therapy, Dominick went into the gym area and got a sucker, he remembered where they were. He took it into the speech room and brought it to me and said, “Open” “I want sucker”. Both Heather and I were stunned.
March 3: Woke up with Dominick in my bed saying, “I wuve you!” “I pee pee” “Pee pee Potty” I took him to his potty and after a few minutes I almost gave up thinking it was too good to be true. Then the potty started to sing the potty song (Once you go to the bathroom it has a temp sensor on it so it will sing) I think it scared him like he had done something wrong. I reassured him it was okay to go potty.
March 7: Dominick took bubbles to Shannon and said, “Open”
March 8: Dominick participated in about half of the activities at Gymboree. He did sing the bubble song and remembered the actions and movements that go with the song. He has not heard it in over 6 months. He made eye contact with several children and tried to talk to two different children.
March 10: Dominick woke up, walked into living room, picked up my water bottle, drank from it and said, “It is so good, Nummy!” While watching a DVD, I put Dominick on his potty in front of TV and gave him my water bottle. He all the sudden while watching the DVD said, “Oh look.” “ A drum.”
March 14: Bought Dominick a new bath toy. When I showed it to him he asked, “What is that?” With perfect diction!
March 16: Dominick is not feeling well. Very cranky today. Not wanting to make any decisions. Not wanting to participate in any activities or answer any questions. Had to cancel hearing evaluation.
March 18: Dominick is now using, “Stop it” and “No” more. It is exciting that he can now communicate to me when he doesn’t like something.
March 22: We got to OT before Anissa. When she got there Dominick looked at her started to walk into gym room and said to her, “Come On, Let’s Go”. The psychologist opened the door to the gym and I heard Dominick say, “Hello”. Everyone was just laughing at Dominick while watching him in the gym. He is such a HAM today.
March 23: Dominick and I went to swim class. Dominick will not blow bubbles in the water. He did great kicking. He was able to climb out of the pool by himself. Put him in the daycare at the gym. He did just fine. After story time today, just before his nap, he sat up and with each hand he pretended like they were puppets and had them talking to each other. Right hand: Hello Left hand: Hello Right hand: How are you? Left hand: I am fine. How are you? And on and on. It was HILLARIOUS!
March 24: Heather, the speech therapist, did a mini evaluation on Dominick today. She said she is starting to run out of material for him. Says he is progressing much faster than anticipated. Ashley and I worked on getting him to ask for objects by using more descriptions such as color. Ashley says he is doing so great because of all the work I am doing for him. “Patting myself on the back!”
March 26: Dominick is saying, “Mommy” “There’s Mommy” “Hi Mommy” “I Wuve You Mommy”, every day several times a day!
March 28: Went to Hailey’s. Dominick and Kaitlin played together. They tossed the ball back and forth. He even tried to communicate with her. He cried when it was time to leave. Went over to Marcella’s house. He showed off! Dancing and talking. MR. PERSONALITY! Dominick has started saying “Thank you” and “Thanks”.
March 29: According to Anissa Dominick is an “A Type” personality. Meaning he will be very detailed and a great organizer. He is going to be a perfectionist. There is a little girl, Ashlyn, around 10 years old who sees Anissa after Dominick. She is severely autistic. She does not hug her parents and rarely talks or looks at people. Last week she took her nurses glasses and put them on me. She looked me right in the eye. She has tremors and bad ticks. They stopped when she was looking me in the eye. I told her thank you and she got excited and clapped. Then I asked her for “High 5” and she gave me two “High 5’s”. This week when Dominick came out of the gym with Anissa, Ashlyn looked at Dominick and said, “My baby”. She saw he had a monkey on his shirt and she said, “My Monkey”. She touched his shirt and grabbed his hand. They sat in the chairs beside each other. Dominick would look at her and she would look at him too. Dominick tried to talk to her in his Gibber Gabber. They just sat there and held each other’s hand. I am blown away by the connection Dominick and I have both made with her. So is Anissa.
April 1: Went swimming with Shannon and Sage. Sage swam up to Dominick and me. He grabbed Dominick’s arm. Dominick said, “Sage! GO AWAY!” He then tried to either push or punch at Sage. This is great progress! Not excited about him wanting to try to harm Sage but excited because Dominick is trying to communicate more about what he likes and dislikes.
April 4: Easter Egg hunt! While watching TV, Dominick started copying the Progressive Insurance commercial. He knew practically all the words and even used dramatic expressions. I truly believe he has photographic memory. I got video of it. Hilarious. Dominick is dancing to Kyle’s radio show. So cute. Loves dancing with his Mommy!
April 7: Ashley is back from vacation. Yay! Dominick is not having a great, good or even okay day. Not wanting to participate. Regressing and going into his little world again. Doing some of his repetitive behaviors and sounds. We are going to have bad days. They SUCK!
So now you are caught up with Dominick. Now for me! I still have days when I feel like “SUPER MOM”. Able to clean the dirtiest of diapers in a single swipe, able to clean all and organize all and do all and be all and blah blah blah…
Then there are the days when I can’t do anything right. I can’t get task completed. I have 5 million tasks to get done. I am not doing enough to help my son. I am the crappiest wife in the world. I am an awful daughter and sister and friend and mother. I miss my daughter Hailey and I am not doing enough for her. I can’t return phone calls to anyone. I can’t even check my email.
It can take its toll out on you. I need an extra 5 hours in the day! I need a clone. I get no sleep usually. I miss being able to have insomnia and getting stuff done while everyone else sleeps. I have learned I have to make time for me. I have to take care of me! If I don’t I will be no good to Dominick. I also have learned that I need to ask for help. I can’t do this alone.
All of this can add a whole lot of strain to a marriage. There is just not enough time in the day. You have to make time to spend with each other. We had to make time to do something with each other that doesn’t involve ASD or Dominick. Marty and I are taking Shag dance lessons. We get to have a date on Friday nights. We get to go out and laugh. I usually only get to see him 2 maybe 3 nights a week. The second he gets home from work on Wednesday and Thursday I walk out the door. I work on some Friday and all Saturday nights. On Sunday I am so exhausted I don’t want to do anything. Communication is usually only a few words on the phone. All of this can make me feel alone in this sometimes. We are getting through it all! It just takes work!
My dad is the greatest!!! He calls me daily to ask me questions, get updates about Dominick, tell me about something new he heard about ASD, mails me articles from the paper, comes to Dominick’s therapy sessions and on and on and on. I am so proud of him. He told me he just wants to be able to talk to his grandson. He wants to know how to communicate with him and understand what it is like for Dominick. WOW!
On April 1 I put blue string lights up at Lynn’s for Autism Awareness month. Bill and Kitten allowed me to tell everyone there about my story and about ASD. I have been blown away from the stories others have of their own experiences with Autism. Their children, grandchildren, nieces, nephews and friends. I had no idea it has touched so many of these people I see every week. So many people came up to me after to give me a hug, a word of thanks because they had no idea how big of a crisis it has become, to tell me about their loved one, a word of encouragement and a whole lot of praise for being a wonderful mom. All of these people from Lynn’s are such a big part of my life. I see them every week. They make me smile and laugh every day I see them. We tell each other jokes and stories. I have become so attached to them all. I look forward to seeing them. I love them and they are in my heart always.
I have some items to sale for Autism Awareness. Car and fridge magnets, pins, decals, bracelets and key and card chains. Crickett has been helping me sell them at Lynn’s. She is such a sweet heart. If anyone would like to purchase anything please contact me. Or if you would just like to make a donation I can help point you in the right direction. The family-run MOSI Foundation will match your contribution up to $1000.00 for a limited time. This is who I plan on making my contribution to. With you help we will be able to fund more research for these amazing kids.
I want to post someone else’s blog post which sums up everything I want you all to know about Autism Awareness, me and my amazing, funny, brilliant son Dominick.
BE AWARE, BY: BOTH HANDS AND A FLASHLIGHT
Be aware that if you’ve met one autistic person, you’ve met one autistic person.
Be aware that just because people don’t talk doesn’t mean they can’t communicate. And it certainly doesn’t mean they aren’t intelligent.
Be aware that sometimes our kids can’t help it. They are trying, incredibly hard.
Be aware that an open mind and a closed mouth are sometimes the best response to a situation.
Be aware that our sons and daughters are awesome.
Be aware that we will kick the butts of anyone who says otherwise.
Be aware that many public figures and organizations talking about autism don’t necessarily speak for a whole lot of us.
Be aware that a lot of the people who talk the most also have the biggest agendas and the most to profit from.
Be aware that if a parent is trying to do something with a child who is melting down in public, pause a minute, postpone judgment, and reflect on whether that child and parent are facing challenges you do not understand.
Be aware that price gouging on materials and equipment infuriates us. We know some companies do it because we have to have what they sell.
But be aware that we are now a people’s movement, and the power is shifting to us. We will find new solutions, and they will be better because we made them. And we won’t mourn when unethical companies go out of business.
Be aware that we are loyal and faithful to those who support us and unforgiving in our pursuits against those who take advantage of our children and us. And we have very, very long memories.
Be aware that we tend to be very fired up about our children and their needs, and we aren’t sorry about it.
Be aware that if anyone messes with one child, they mess with all of us.
Be aware that we are unapologetic about getting funding for special education, disability services, or other supports. If people want to argue against these programs, that’s their right. But be aware that if anyone says our kids aren’t ‘worth it’, rather than debate them on the merits or lack thereof, we’ll just tell them to go to hell.
Be aware that we are not asking for ’special rights’, which is just code language for discrimination anyway. We are working to give our children an equal chance at achieving their potential as any other child. When discussions turn toward whether a child is ‘deserving’ of such help, all children suffer, and we sink toward a moral bankruptcy that they will inherit from us.
Be aware that our children are not broken, damaged, or lost.
Be aware that the words we use matter.
Be aware that you are talking about our children – my children. And be aware that many of them take those words literally and personally.
Be aware that we may sound angry, but that’s because we are fighting for our children, and we fight this battle for them every day.
Be aware that anyone with a soul would fight for these things for their own child if they were in our shoes.
Be aware that all we want is for our children to have a chance to be who they were born to be – just like anyone else does for their own kids.
Be aware that there are a multitude of autistic adults trying to live out their dreams and aspirations. It’s not just about children; adults need services and support too.
Be aware that we are often very tired.
Be aware that we expect great things from our children, and they often humble us with how far they exceed all expectations.
Be aware that we will never give up fighting for them.
And be aware that I still wouldn’t trade my life for anything.
BY: BOTH HANDS AND A FLASHLIGHT
Tuesday, March 2, 2010
Breathing In & Out Isn't So Easy
I am still going through my 100 Day Kit sent to us free from Autism Speaks. It is designed to help you after you have a diagnosis of Autism. I am going through all of the safety issues.
A whole lot of fear has set in on me. My Dominick is a "wanderer". He will take off and not look back. He is oblivious to his surroundings. He doesn't even realize I am not near him. He could run out into the middle of the street and have ZERO idea that cars even exist.
I have to worry about every window, every door, every cabinet, every drawer. I have to worry about scissors, pens, pencils, cleaning products, medicines, tools, garbage, TVs, book cases and tall furniture that could fall over.
I have to worry about him getting lost and not being able to find him. He most of the time does not respond to me calling his name. He would not be able to communicate with a stranger. How would he be able to find me or tell someone who he is and who I am?
HELP!!! I found my saving grace and it is two websites... http://www.mypreciouskid.com/ and http://www.lucasworks.com/. I was able to get a safety kit which includes DNA ID, teeth impressions, fingerprints, ID tags with child info for wallets and car seat, ID bracelets and shoe stickers. I also get a electronic child locator which attaches to his shoes and alerts me if he gets beyond 20 feet away from me and I can locate him up to 150 feet away. It is a little blue bear he will wear on his shoe and I will have a locator i can carry. I also got temporary Autism tattoos that come with a waterproof non toxic pen so I can write his and my info on him. A medical alert bracelet. I know I am forgetting some of the other stuff also.
My husband thinks I am going overboard. I never want to be unprepared for a single event, circumstance or instance. I do not want to have to look back and say to myself, "I could have should have done more to keep him safe and protected."
On both of the websites there is also great information and history about their children. I spent hours last night on http://www.lucasworks.com/. Lucas is a 17 year old with autism and is mentally retarded. His mother Lauren is the one who started Lucas Works. She has put so much helpful info on this site and has also shared her and Lucas's story. I feel truly blessed after reading about her story.
Next on my project list is getting together a flyer with Dominick's picture and information to have ready in case of emergency. I am going to go around to a couple of neighbors to also make them alert of Dominick and our situation. I will make sure to check the sex offenders websites before I do. YOU NEVER REALLY KNOW YOUR NEIGHBORS. Plus I do not want to end up on Oprah's couch crying.
I am going to also take Dominick to the police stations and fire department to make them aware and let him see what the police and firemen look like. Also make sure they have flyers on file of him.
Getting all the cabinets, windows, drawers and doors ready will be on Marty's list to do. This will be a great time to get everything in my house organized. A place for everything and everything in its place.
Therapy is going along great. Mondays we have Gymboree and then Occupational Therapy. Wednesdays and Fridays we have Speech Therapy. Ashlee comes over on Wednesdays after Speech to work with us. I am looking for a two day a week, half day, "Mommy's Morning Out" kind of program for him so he can interact with other children. Now the only problem is finding one that will fit him. He isn't going to participate like the other kids. He isn't going to listen to the teacher like the other kids. I am very afraid of him being punished. Will the teachers be able to understand what his autism is and how it makes him different?
I am going to sign him up for swim lessons. Many children with autism are very very very very very very attracted to the water. Whether it is flushing the toilet, which he must do and no one is allowed in this house except for him to flush, or watching the water come out of the faucet or watching it rain outside, he will stop what he is doing and go off into his own little world. And it is very hard to get him to come back into mine. We are going to try the YMCA first.
Breath in, Breath out, Breath in, Breath out. It is so easy to feel overwhelmed. It is so easy to feel sorry for yourself. It is so easy to cry and just want to give up. I never go down the easy path.
A whole lot of fear has set in on me. My Dominick is a "wanderer". He will take off and not look back. He is oblivious to his surroundings. He doesn't even realize I am not near him. He could run out into the middle of the street and have ZERO idea that cars even exist.
I have to worry about every window, every door, every cabinet, every drawer. I have to worry about scissors, pens, pencils, cleaning products, medicines, tools, garbage, TVs, book cases and tall furniture that could fall over.
I have to worry about him getting lost and not being able to find him. He most of the time does not respond to me calling his name. He would not be able to communicate with a stranger. How would he be able to find me or tell someone who he is and who I am?
HELP!!! I found my saving grace and it is two websites... http://www.mypreciouskid.com/ and http://www.lucasworks.com/. I was able to get a safety kit which includes DNA ID, teeth impressions, fingerprints, ID tags with child info for wallets and car seat, ID bracelets and shoe stickers. I also get a electronic child locator which attaches to his shoes and alerts me if he gets beyond 20 feet away from me and I can locate him up to 150 feet away. It is a little blue bear he will wear on his shoe and I will have a locator i can carry. I also got temporary Autism tattoos that come with a waterproof non toxic pen so I can write his and my info on him. A medical alert bracelet. I know I am forgetting some of the other stuff also.
My husband thinks I am going overboard. I never want to be unprepared for a single event, circumstance or instance. I do not want to have to look back and say to myself, "I could have should have done more to keep him safe and protected."
On both of the websites there is also great information and history about their children. I spent hours last night on http://www.lucasworks.com/. Lucas is a 17 year old with autism and is mentally retarded. His mother Lauren is the one who started Lucas Works. She has put so much helpful info on this site and has also shared her and Lucas's story. I feel truly blessed after reading about her story.
Next on my project list is getting together a flyer with Dominick's picture and information to have ready in case of emergency. I am going to go around to a couple of neighbors to also make them alert of Dominick and our situation. I will make sure to check the sex offenders websites before I do. YOU NEVER REALLY KNOW YOUR NEIGHBORS. Plus I do not want to end up on Oprah's couch crying.
I am going to also take Dominick to the police stations and fire department to make them aware and let him see what the police and firemen look like. Also make sure they have flyers on file of him.
Getting all the cabinets, windows, drawers and doors ready will be on Marty's list to do. This will be a great time to get everything in my house organized. A place for everything and everything in its place.
Therapy is going along great. Mondays we have Gymboree and then Occupational Therapy. Wednesdays and Fridays we have Speech Therapy. Ashlee comes over on Wednesdays after Speech to work with us. I am looking for a two day a week, half day, "Mommy's Morning Out" kind of program for him so he can interact with other children. Now the only problem is finding one that will fit him. He isn't going to participate like the other kids. He isn't going to listen to the teacher like the other kids. I am very afraid of him being punished. Will the teachers be able to understand what his autism is and how it makes him different?
I am going to sign him up for swim lessons. Many children with autism are very very very very very very attracted to the water. Whether it is flushing the toilet, which he must do and no one is allowed in this house except for him to flush, or watching the water come out of the faucet or watching it rain outside, he will stop what he is doing and go off into his own little world. And it is very hard to get him to come back into mine. We are going to try the YMCA first.
Breath in, Breath out, Breath in, Breath out. It is so easy to feel overwhelmed. It is so easy to feel sorry for yourself. It is so easy to cry and just want to give up. I never go down the easy path.
Thursday, February 18, 2010
I Love Progress!
Well we have been very, very busy. On Friday February 12, 2010 we went to Sugar Creek Elementary School to meet the Psychologist, Joanne Shields, and so Dominick could be evaluated for early intervention in the school system. Ashlee, our in home therapist from Easter Seals, set up the meeting and met us at the school. Not the closest school to us but not too far away either. Beautiful school!
We went into a small conference room. There were some toys in the room for Dominick to play with. I began answering questions and telling our story, I now have a stock speech. She began to explain how the early intervention will work and what we need to get done before he becomes enrolled.
They will be working with Dominick on basic skills such as putting on and taking off shoes and clothes, feeding himself, interacting with others, dealing with structure, dealing with stress and how to deal with "NO", colors, shapes, textures, speech therapy and most importantly... POTTY TRAINING! And so much more.
Dominick was his usual funny, "Mr. Personality", hammy, cute self. He started his gibber gabber while we were talking. He would come up to the table, blow with his lips puckered making a loud noise and then start to fake laugh, "HA HA HE HE HA HA HA HE HA". Joanne made the comment that she is going to love working with him. After filling out paper work we were done. Task one done. Check.
Then on Monday I get a call from Tega Cay Speaks, Speech and Occupational therapy. Ashlee arranged for them to call me. Did I mention she is my hero? They were able to get me in today before my time with Ashlee. Two great things about Tega Cay Speaks, one, they are less than a mile away from me, two, Dominick can get both therapies he needs in one location. I go through the question and answer formality and give my "Stock Speech". She observes Dominick. Paper work. Dominick will be attending speech therapy two times a week for 30 minute sessions. YAY! Task two done. Check. The Occupational Therapist will be calling me to set up time for an evaluation within the next week or so.
Ashlee came over after our Tega Cay Speaks appointment. Dominick lit up when she came in. He immediately went for her bag of toys. He pulled out a ball she had on top. She was working on getting him to answer her and respond to verbal cues. After the ball she pulled out a puzzle with emergency vehicles on it, a police car, fire engine, helicopter, motorcycle and tow truck. She would hold up two pieces and ask him which one he wanted. He did a great job of answering her and telling her which one he wanted. After he put all the pieces in the correct spots she would ask him what each one was. She pointed to the police car and asked him what kind it was. He said, "That’s a car." WE HAVE A SENTENCE! Ashlee and I looked at each other in disbelief. SO HAPPY.
Everything is coming together. I now have a game plan. I now have therapies in place for my Monkey. I am getting him enrolled in school. Man I LOVE PROGRESS!
We went into a small conference room. There were some toys in the room for Dominick to play with. I began answering questions and telling our story, I now have a stock speech. She began to explain how the early intervention will work and what we need to get done before he becomes enrolled.
They will be working with Dominick on basic skills such as putting on and taking off shoes and clothes, feeding himself, interacting with others, dealing with structure, dealing with stress and how to deal with "NO", colors, shapes, textures, speech therapy and most importantly... POTTY TRAINING! And so much more.
Dominick was his usual funny, "Mr. Personality", hammy, cute self. He started his gibber gabber while we were talking. He would come up to the table, blow with his lips puckered making a loud noise and then start to fake laugh, "HA HA HE HE HA HA HA HE HA". Joanne made the comment that she is going to love working with him. After filling out paper work we were done. Task one done. Check.
Then on Monday I get a call from Tega Cay Speaks, Speech and Occupational therapy. Ashlee arranged for them to call me. Did I mention she is my hero? They were able to get me in today before my time with Ashlee. Two great things about Tega Cay Speaks, one, they are less than a mile away from me, two, Dominick can get both therapies he needs in one location. I go through the question and answer formality and give my "Stock Speech". She observes Dominick. Paper work. Dominick will be attending speech therapy two times a week for 30 minute sessions. YAY! Task two done. Check. The Occupational Therapist will be calling me to set up time for an evaluation within the next week or so.
Ashlee came over after our Tega Cay Speaks appointment. Dominick lit up when she came in. He immediately went for her bag of toys. He pulled out a ball she had on top. She was working on getting him to answer her and respond to verbal cues. After the ball she pulled out a puzzle with emergency vehicles on it, a police car, fire engine, helicopter, motorcycle and tow truck. She would hold up two pieces and ask him which one he wanted. He did a great job of answering her and telling her which one he wanted. After he put all the pieces in the correct spots she would ask him what each one was. She pointed to the police car and asked him what kind it was. He said, "That’s a car." WE HAVE A SENTENCE! Ashlee and I looked at each other in disbelief. SO HAPPY.
Everything is coming together. I now have a game plan. I now have therapies in place for my Monkey. I am getting him enrolled in school. Man I LOVE PROGRESS!
Monday, February 8, 2010
Today Is My Happy Day
We started giving Dominick a liquid vitamin supplement almost two months ago. Since then the progress Dominick has made is INCREDIBLE! Just this past Saturday he made a friend in Gymboree, Ricky. He played and interacted with him. And he even participated a little in the activities. This is a first for Dominick. Other than Sage, my four year old nephew, Dominick doesn't have anything to do with other children. He likes older kids a lot better than kids his age. Then today at Gymboree he blew me away. He did every single activity. He sang the songs, he did all the activities, he talked to Miss Terry and Miss Susan, he played with Blake and Gretchen and he answered the questions when Miss Terry asked him something.
I truly believe that the vitamins are making a difference.
Last Thursday Ashlee from Easter Seals came by the house for the first time. She is Dominick's in home therapist. From the moment she walked in Dominick fell in love with her. She brought over a lot of toys to play with Dominick. She did an evaluation and asked me a ton of questions. She went over a plan for Dominick and his treatment and therapy.
She is setting up genetic counseling and testing for him. She is setting up ABA therapy workshop for us which Easter Seals will pay, thank goodness because WOW the cost! She is setting up Speech and Occupational Therapy with Tega Speaks which is right down the street from us. She is setting up Dominick to enroll in the school system. She is getting us enrolled in financial help programs for help with all the therapies. Baby Net will end when he turns 3 so she is trying to get it extended for us until he is age 5.
Ashlee called me this morning and in just one business day she managed to get us in with Tega Speaks for the Speech Therapy. He might have to go to another Occupational Therapist because of the waiting list at Tega Speaks but she is checking and will let me know later today and she already has an alternate lined up in Pineville. She has already got an appointment for us to have an evaluation with York County Schools on Friday.
Ashlee will be coming over every Wednesday for one hour of therapy. I LOVE HER! In one day she has accomplished more for me than any Doctor Dominick has seen. She is my HERO!
Today is a great day. Today is my happy day. Thank you Vitamins. Thank you Ashlee. And best of all THANK YOU DOMINICK FOR BLESSING MY LIFE.
You have to have the bad days to remind you of how great the good days are. My friend Michelle told me that. Thanks.
I truly believe that the vitamins are making a difference.
Last Thursday Ashlee from Easter Seals came by the house for the first time. She is Dominick's in home therapist. From the moment she walked in Dominick fell in love with her. She brought over a lot of toys to play with Dominick. She did an evaluation and asked me a ton of questions. She went over a plan for Dominick and his treatment and therapy.
She is setting up genetic counseling and testing for him. She is setting up ABA therapy workshop for us which Easter Seals will pay, thank goodness because WOW the cost! She is setting up Speech and Occupational Therapy with Tega Speaks which is right down the street from us. She is setting up Dominick to enroll in the school system. She is getting us enrolled in financial help programs for help with all the therapies. Baby Net will end when he turns 3 so she is trying to get it extended for us until he is age 5.
Ashlee called me this morning and in just one business day she managed to get us in with Tega Speaks for the Speech Therapy. He might have to go to another Occupational Therapist because of the waiting list at Tega Speaks but she is checking and will let me know later today and she already has an alternate lined up in Pineville. She has already got an appointment for us to have an evaluation with York County Schools on Friday.
Ashlee will be coming over every Wednesday for one hour of therapy. I LOVE HER! In one day she has accomplished more for me than any Doctor Dominick has seen. She is my HERO!
Today is a great day. Today is my happy day. Thank you Vitamins. Thank you Ashlee. And best of all THANK YOU DOMINICK FOR BLESSING MY LIFE.
You have to have the bad days to remind you of how great the good days are. My friend Michelle told me that. Thanks.
Monday, February 1, 2010
Can't Sleep + Google Autism = Crying
Navigating through so many different websites on Autism is difficult, confusing, depressing, hopeful, interesting and stomach turning to say the least. I Google autism. Then I Google autism awareness. Then autism therapies. Then autism YouTube. Then autism blogs. I forgot my own rule I made for myself. Rule: Only digest a limited amount of information at a time so not to feel over whelmed or too sad. Oopsie. Not to mention Full Moon and PMS are great contributing factors to my emotional stability right now.
It is amazing the amount of support there is out there. Autism Speaks, National Autism Association, Autism Society of America, Autism Support Network, Easter Seals, Generation Rescue and on and on. The amount of information to digest is endless. Am I learning the correct information? Am I looking in the right direction? For every great response to each organization there is a negative out there as well.
On YouTube you can see a lot of wonderful videos of children, different therapies in practice, informational fundraisers. There are a few dedications to parents and children with music and pictures that will just get your gut wrenching and tears a flowing.
The blogs are very interesting to read. A lot of opinions on how vaccines are the cause. Or how mercury is the cause. Or how diet will or will not work. Along with a lot of pictures of beautiful children.
I can't remember where I read this but it went something along the lines of:
Imagine being in a foreign country for one day not being able to speak the language. Only recognizing a few words. Not being able to ask anyone for help. Not being able to understand anyone and them not being able to understand you. Not being able to read their reactions to you and you not being able to understand them as well. Not being able to convey to anyone what you need or want, if you are sick or hurt, hungry or thirsty or tired. Now imagine you have to live this way every day. This is the life of autism.
I read someone's response to a YouTube video of a mother who was just expressing her story of her daughter. We have a similar story. The anger in response to what I thought a beautiful video of love for her daughter was terrifying for me to read. One person said, "You quote that more children are diagnosed with autism than cancer and aids combined. Your child isn't going to die from autism. Autism isn't a death sentence." You know what, you're right. It isn't a death sentence. It is a life sentence.
I can only hope that one day my son will grow out of this. I can only hope that he will continue to hug me. That he will call me Mommy again. That he will be able to go to school with other kids and be able to function as well as them. I have every hope in the world that this will happen for us. I have every hope that all these hopes I have of simple everyday activities will be replaced with the bigger dreams I once had for him and still do its just they take a back seat to the smaller ones now. I just do not have any guarantees that this day will come. Only the hopes that this day will come.
One in every 110 children. One in every 70 boys. That is some very scary odds for the future of this country. Who will take care of all these children?
To end this on a happier note… We do laugh from time to time. On our way home from dinner tonight, Marty was getting Dominick to repeat stuff in the car. Marty, “Say One” Dominick, “Say One” Marty, “Say Dominick” Dominick, “Dominick” Marty, “Mi nombre es Dominick” Dominick, “gibber gabber gibber gabber” Deva, “Our son isn’t autistic. He’s Spanish!” Well it was funny to us.
It is amazing the amount of support there is out there. Autism Speaks, National Autism Association, Autism Society of America, Autism Support Network, Easter Seals, Generation Rescue and on and on. The amount of information to digest is endless. Am I learning the correct information? Am I looking in the right direction? For every great response to each organization there is a negative out there as well.
On YouTube you can see a lot of wonderful videos of children, different therapies in practice, informational fundraisers. There are a few dedications to parents and children with music and pictures that will just get your gut wrenching and tears a flowing.
The blogs are very interesting to read. A lot of opinions on how vaccines are the cause. Or how mercury is the cause. Or how diet will or will not work. Along with a lot of pictures of beautiful children.
I can't remember where I read this but it went something along the lines of:
Imagine being in a foreign country for one day not being able to speak the language. Only recognizing a few words. Not being able to ask anyone for help. Not being able to understand anyone and them not being able to understand you. Not being able to read their reactions to you and you not being able to understand them as well. Not being able to convey to anyone what you need or want, if you are sick or hurt, hungry or thirsty or tired. Now imagine you have to live this way every day. This is the life of autism.
I read someone's response to a YouTube video of a mother who was just expressing her story of her daughter. We have a similar story. The anger in response to what I thought a beautiful video of love for her daughter was terrifying for me to read. One person said, "You quote that more children are diagnosed with autism than cancer and aids combined. Your child isn't going to die from autism. Autism isn't a death sentence." You know what, you're right. It isn't a death sentence. It is a life sentence.
I can only hope that one day my son will grow out of this. I can only hope that he will continue to hug me. That he will call me Mommy again. That he will be able to go to school with other kids and be able to function as well as them. I have every hope in the world that this will happen for us. I have every hope that all these hopes I have of simple everyday activities will be replaced with the bigger dreams I once had for him and still do its just they take a back seat to the smaller ones now. I just do not have any guarantees that this day will come. Only the hopes that this day will come.
One in every 110 children. One in every 70 boys. That is some very scary odds for the future of this country. Who will take care of all these children?
To end this on a happier note… We do laugh from time to time. On our way home from dinner tonight, Marty was getting Dominick to repeat stuff in the car. Marty, “Say One” Dominick, “Say One” Marty, “Say Dominick” Dominick, “Dominick” Marty, “Mi nombre es Dominick” Dominick, “gibber gabber gibber gabber” Deva, “Our son isn’t autistic. He’s Spanish!” Well it was funny to us.
Patience Has A Whole New Meaning
For those of you who know me patience is something I haven't had a whole lot of in my life. I hate surprise parties. I can't ever seem to get a gift for someone to early because I always tell them what it is or give it to them early. My poor daughter can also testify to my lack of patience. She knows all too well. Especially those who I don't have a close personal relationship with. I have zero patience with incompetence. Simple tasks that are not followed or are done incorrectly make me want to scream my head off. Poor Marty, my husband, has been a punching bag for my lack of patience. I get this from both of my parents. HARD HEADED!
I used to be a person who would say, "You can't teach an old dog new tricks!" I would especially apply that one to myself. I don't believe this any longer. Dominick has taught me the meaning of patience.
Before we knew of Dominick's diagnosis I would be sitting with him at lunch. I would ask him if he was done or all finished. I would get nothing back. Not a verbal response. Not a look of acknowledgement. Nothing. I would tell him he could get down once he responded. Just say "All done" or "Finished" or "Down". He would just sit there and do nothing. I some days would beg for a response, "Please baby just talk to Mommy. Just say all done or down. Please." I did my best not to let him see me upset or cry. I did my best not to let him hear it in my voice. But he did at times. I wonder if he understood why I was upset or if he can understand.
Potty training is a whole new bag of tricks for me. I have a potty training video he watches and we have Pee Pee Potty Time where I take him to his potty and put him on it. He used to sit on the potty for a minute but now he just wants to take the potty apart and play in the bathroom. I still haven't gotten lucky once with him sitting on the potty. How do you get someone who doesn't ask for anything to tell you he needs to potty? How do you explain to someone who might not even understand what you are saying how to use the potty? I would like to take this moment to thank my daughter Hailey for being the perfect baby and being so easy to potty train.
I never know if Dominick is hungry. I never know if Dominick is thirsty. I never know if he is craving a certain food or a certain drink. I give him something to eat and drink throughout the day just because it is time to eat or drink. I don't know if he is actually hungry or thirsty. He has never told me.
Time outs still do work. He does know when he is doing something he shouldn't do. And if we have to tell him more than once he goes to time out. We tell him why he is and what he did and what he should do instead. Does he understand it all? I hope so.
I will say I am very proud of myself for not raising my voice and yelling. This is something very hard for me. That is usually my first response. I am a yeller. I like to raise my voice to a very loud level. It was how I was raised. It has been all I have known. So for me to not yell is a huge step forward for me. Don't get me wrong, I AM NOT PERFECT. I have some slips. But not with Dominick. I am doing it right with him.
Frustration is a part of life for me now. Dominick isn't the only frustration factor in my life. I hear someone say, "I just wish they would stop asking me questions", or "I wish they would just stop saying Mama", or "I just wish he would leave me alone". They just really do not know how lucky they are. I would love to have any of those options. Doctors are a huge part of it. The whole process of finding help for Dominick is frustrating. I am trying to be patient and let the whole process work. The lack of info from everyone and the passing of the buck is enough to make me explode. I accept it. That is all I can do. I let go.
God grant me the serenity to accept the things I cannot change, The courage to change the things I can and the wisdom to know the difference.
The serenity prayer takes on a whole new meaning for me. It never had true meaning for me before when I said it. I didn't have a real struggle to go through. Now I understand it truly.
I used to be a person who would say, "You can't teach an old dog new tricks!" I would especially apply that one to myself. I don't believe this any longer. Dominick has taught me the meaning of patience.
Before we knew of Dominick's diagnosis I would be sitting with him at lunch. I would ask him if he was done or all finished. I would get nothing back. Not a verbal response. Not a look of acknowledgement. Nothing. I would tell him he could get down once he responded. Just say "All done" or "Finished" or "Down". He would just sit there and do nothing. I some days would beg for a response, "Please baby just talk to Mommy. Just say all done or down. Please." I did my best not to let him see me upset or cry. I did my best not to let him hear it in my voice. But he did at times. I wonder if he understood why I was upset or if he can understand.
Potty training is a whole new bag of tricks for me. I have a potty training video he watches and we have Pee Pee Potty Time where I take him to his potty and put him on it. He used to sit on the potty for a minute but now he just wants to take the potty apart and play in the bathroom. I still haven't gotten lucky once with him sitting on the potty. How do you get someone who doesn't ask for anything to tell you he needs to potty? How do you explain to someone who might not even understand what you are saying how to use the potty? I would like to take this moment to thank my daughter Hailey for being the perfect baby and being so easy to potty train.
I never know if Dominick is hungry. I never know if Dominick is thirsty. I never know if he is craving a certain food or a certain drink. I give him something to eat and drink throughout the day just because it is time to eat or drink. I don't know if he is actually hungry or thirsty. He has never told me.
Time outs still do work. He does know when he is doing something he shouldn't do. And if we have to tell him more than once he goes to time out. We tell him why he is and what he did and what he should do instead. Does he understand it all? I hope so.
I will say I am very proud of myself for not raising my voice and yelling. This is something very hard for me. That is usually my first response. I am a yeller. I like to raise my voice to a very loud level. It was how I was raised. It has been all I have known. So for me to not yell is a huge step forward for me. Don't get me wrong, I AM NOT PERFECT. I have some slips. But not with Dominick. I am doing it right with him.
Frustration is a part of life for me now. Dominick isn't the only frustration factor in my life. I hear someone say, "I just wish they would stop asking me questions", or "I wish they would just stop saying Mama", or "I just wish he would leave me alone". They just really do not know how lucky they are. I would love to have any of those options. Doctors are a huge part of it. The whole process of finding help for Dominick is frustrating. I am trying to be patient and let the whole process work. The lack of info from everyone and the passing of the buck is enough to make me explode. I accept it. That is all I can do. I let go.
God grant me the serenity to accept the things I cannot change, The courage to change the things I can and the wisdom to know the difference.
The serenity prayer takes on a whole new meaning for me. It never had true meaning for me before when I said it. I didn't have a real struggle to go through. Now I understand it truly.
Thursday, January 28, 2010
The Blame Game
My husband and I had decided back in October of 2009 that we wanted to have another child. We would really love to have another little girl. My daughter is now 18 and Marty wanted another child. So we decided after the holidays and the New Year we would start trying to have another child. I had gone to the doctor and I was taking my prenatal vitamins. I had been exercising and had lost a lot of weight. I felt so ready and excited.
When I was pregnant with Dominick we went to the Renaissance Fair and Marty got a dragon wind chime for the Dominick's nursery. So when we went this year we decided to get one for our future baby. We had already started thinking of names. Shannon Josephine if it was a girl and Hayden if it was going to be a boy.
Then came the diagnosis of autism. I went to see my OB/GYN Dr. Soloman, who is one of the longest male relationships in my life. He has seen me through a lot. Absolutely terrific doctor. Enough of the plug, back to what I was talking about. So the odds of having a child with autism is now 1 in 110 and if you have a boy 1 in 75. When you already have an autistic child your odds will now be 1 in 75 and if you have a boy 1 in 50.
Dr. Soloman drew blood and tested me for Fragile X gene. Fragile X is a family of genetic conditions, which can impact individuals and families in various ways. These genetic conditions are related in that they are all caused by gene changes in the same gene, called the FMR1 gene. It is the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. FXS is the most common known cause of autism or "autistic-like" behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development. I got the results that I am not a carrier of Fragile X. So what now?
Dr. Soloman also referred us to a genetic counselor. She has been extremely helpful in getting Dominick in for genetic testing and counseling. We are still going to have a little bit of a wait to get in. She recommended we not try until we get back Dominick's results from any genetic tests. This could take up to a year.
Family history plays in a huge factor. On my side of the family there is not a history of autism. On my husband Marty's side there are some cases of autism. One of Marty's first cousin's has 3 boys all with ASD. I couldn't even imagine.
So Dr. Soloman opens the topic of donated sperm. Not something I ever thought I would ever think of as an option. There it is. Then there are the options of adoption or fostering. With adoption I don't think we have a good chance. Asking your husband if he is okay with the idea of using someone else's DNA to create your child is not easy. "Hey honey pass the salt and oh yeah how do you feel about sperm donation?"
Now comes the practical questions. Am I going to be able to handle having a baby and still be able to give Dominick everything he is going to need of me? Are we going to be able to afford a new baby and all the therapies and school that Dominick is going to need? Am I willing to take the chance of having another child? Is Marty going to be okay with not having another child? Is Marty going to blame this on me? Is he going to bare all the weight of this on himself? Am I willing to give up on having another child?
Well we have decided to not have another baby. My heart is ripped open just by typing those words. Everyday I see the wind chime we got for the baby and I get a knot inside of me. I see other babies and it takes everything in me not to break down. I have to go and hide in the bathroom or laundry room because I don't want anyone to see me upset. I was going through Dominick's clothes the other day and saw a couple of his baby outfits I set aside to save for him one day when he has children and I fell apart. Just the idea of Shannon Josephine or Hayden was enough to make me mourn the loss of the dream of them.
The most important thing in all of this for me is that it is not my fault. It is not my husband’s fault. It is not my son’s fault. It is just what it is. It wasn't that God didn't give me what I wanted or asked for or that he wasn't listening. Sometimes the answer is just not the one you want. I trust in him and his plan for me. He gives me what he knows I can carry.
When I was pregnant with Dominick we went to the Renaissance Fair and Marty got a dragon wind chime for the Dominick's nursery. So when we went this year we decided to get one for our future baby. We had already started thinking of names. Shannon Josephine if it was a girl and Hayden if it was going to be a boy.
Then came the diagnosis of autism. I went to see my OB/GYN Dr. Soloman, who is one of the longest male relationships in my life. He has seen me through a lot. Absolutely terrific doctor. Enough of the plug, back to what I was talking about. So the odds of having a child with autism is now 1 in 110 and if you have a boy 1 in 75. When you already have an autistic child your odds will now be 1 in 75 and if you have a boy 1 in 50.
Dr. Soloman drew blood and tested me for Fragile X gene. Fragile X is a family of genetic conditions, which can impact individuals and families in various ways. These genetic conditions are related in that they are all caused by gene changes in the same gene, called the FMR1 gene. It is the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. FXS is the most common known cause of autism or "autistic-like" behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development. I got the results that I am not a carrier of Fragile X. So what now?
Dr. Soloman also referred us to a genetic counselor. She has been extremely helpful in getting Dominick in for genetic testing and counseling. We are still going to have a little bit of a wait to get in. She recommended we not try until we get back Dominick's results from any genetic tests. This could take up to a year.
Family history plays in a huge factor. On my side of the family there is not a history of autism. On my husband Marty's side there are some cases of autism. One of Marty's first cousin's has 3 boys all with ASD. I couldn't even imagine.
So Dr. Soloman opens the topic of donated sperm. Not something I ever thought I would ever think of as an option. There it is. Then there are the options of adoption or fostering. With adoption I don't think we have a good chance. Asking your husband if he is okay with the idea of using someone else's DNA to create your child is not easy. "Hey honey pass the salt and oh yeah how do you feel about sperm donation?"
Now comes the practical questions. Am I going to be able to handle having a baby and still be able to give Dominick everything he is going to need of me? Are we going to be able to afford a new baby and all the therapies and school that Dominick is going to need? Am I willing to take the chance of having another child? Is Marty going to be okay with not having another child? Is Marty going to blame this on me? Is he going to bare all the weight of this on himself? Am I willing to give up on having another child?
Well we have decided to not have another baby. My heart is ripped open just by typing those words. Everyday I see the wind chime we got for the baby and I get a knot inside of me. I see other babies and it takes everything in me not to break down. I have to go and hide in the bathroom or laundry room because I don't want anyone to see me upset. I was going through Dominick's clothes the other day and saw a couple of his baby outfits I set aside to save for him one day when he has children and I fell apart. Just the idea of Shannon Josephine or Hayden was enough to make me mourn the loss of the dream of them.
The most important thing in all of this for me is that it is not my fault. It is not my husband’s fault. It is not my son’s fault. It is just what it is. It wasn't that God didn't give me what I wanted or asked for or that he wasn't listening. Sometimes the answer is just not the one you want. I trust in him and his plan for me. He gives me what he knows I can carry.
Wednesday, January 27, 2010
Telling Friends & Family
When you are pretty much "Bitch Slapped" with the news that you have a child with autism going through all the emotions is a daily battle. Having to tell people who are in your life and care for you is a difficult road to navigate. They see Dominick as this perfect child who is well behaved. Dominick has been the perfect child. He goes to bed no problem. He always slept through the night and when we transitioned into a big boy bed we had zero problems. He is a picky eater but does eat well. He doesn't have big tantrums and for the most part listens to us. So when we tell friends and family "Dominick is autistic" their first reaction is "No he isn't".
Then I have to go into defense mode and explain over and over why my child is autistic. It is so backwards in my head to have to defend a disability that my child has. It is a dagger soaked in lemon juice, hydrochloric acid and salt that pierces my heart over and over again every time I go through it. I know everyone only has good intentions and loves us. But you don't see what my husband Marty and I see. Sure if you come over to see us and you spend a few minutes with him he seems like an average toddler. But I see him at Gymboree with other kids his age and I see him with his two cousins and I see he isn't the same. It could be so much worse. And I thank God in my heart every day that it is not. If it wasn't for my faith in God I would not be able to get through this. And you will definitely not hear me question God why me why my child.
One of my best friends Mike said, "Wow this sucks. I don't really know what to say except this sucks." At that moment that was the most perfect phrase I could have ever heard. That was exactly what I needed. THIS SUCKS! So I then sent an email to our friends and family:
Hi everyone,
Some of you may already know about Dominick. For those of you that don't Marty and I took Dominick to see his pediatrician earlier this year regarding concerns about his development and speech. She
recommended a Behavioral Specialist for us to see. We filled out the papers sent to us (wow was that a lot of paper work and questionnaires). Due to his high demand we were not able to get in to see him until this past Thursday. After talking with us, a neurological exam and him playing and trying to interact with Dominick he gave us news we were not expecting at all. ASD, AUTISM SPECTUM DISORDER. We were prepared for Speech Therapy but not AUTISM.
Is my child going to grow up with a normal childhood? Is my child going to not talk and rock back and forth? Is my child going to be able to have a family of his own one day? Will my child play sports? All of this plus a million other questions flooded us all at once. Will my child ever say to me, "Mommy I love you"?
What causes it? We do not know. Chances are there is a hereditary factor in our case. We do not know. How bad is it? I don't know. I see things happen some days that make me scared and the next day I don't see them. Does he communicate with us? No he does not. Does he hug me? Yes he
does. We are going to be going to a Speech Therapist and an Engagement Therapist. We will be trying to find a Mother's Morning out program that can help with him.
How severe is he in the Spectrum? We do not know.
Here is what we need! We know that you all love us and Dominick very much. We know you all think
he is a perfect little boy. He is well behaved, beautiful, and smart and has been so great about sleeping in his big boy bed and sleeping through the night and so on and so on. And you are all right he is all of these things and so much more. Then there is also the side of his story that all of you do not see that we see as his parents. His love of watching ceiling fans, watching running water, repetitive movement of his hands and arms, running around in circles, spinning, banging his head on the couch over and over, staring off into space, not answering us or acknowledging us when we call his name, not communicating with us, not asking us for anything, not saying Mommy or Daddy, not playing with other kids at Gymboree, not participating in activities at Gymboree, parroting words and actions, and a thousand other things.
I know that a lot of people have a lot of strong opinions on autism. You are allowed to have them. Right now all we need is to know you love and support us and think that this sucks. My friend Mike put it the best, "I do not know what to say. This Sucks!" That was perfect. Thanks Mike.
We hope to have more answers soon and we will probably always have more questions than answers. We pray that he will be that child that gets help and out grows it. Diabetes... Insulin Asthma... Inhaler Autism...???
On Friday the CDC released a report that now 1 out of every 110 children will be diagnosed autistic with 1 out of every 70 boys. They are now saying that it is a Public Health Crisis.
We are so lucky to have such wonderful friends and family in our lives. Everyone hug your loved ones. Kiss your kids and play a game with them. Have a wonderful Christmas and please count every blessing in your life.
Thanks everyone,
Deva & Marty Chirico
So now everyone knows. Battle one down. Bring on the next challenge.
Then I have to go into defense mode and explain over and over why my child is autistic. It is so backwards in my head to have to defend a disability that my child has. It is a dagger soaked in lemon juice, hydrochloric acid and salt that pierces my heart over and over again every time I go through it. I know everyone only has good intentions and loves us. But you don't see what my husband Marty and I see. Sure if you come over to see us and you spend a few minutes with him he seems like an average toddler. But I see him at Gymboree with other kids his age and I see him with his two cousins and I see he isn't the same. It could be so much worse. And I thank God in my heart every day that it is not. If it wasn't for my faith in God I would not be able to get through this. And you will definitely not hear me question God why me why my child.
One of my best friends Mike said, "Wow this sucks. I don't really know what to say except this sucks." At that moment that was the most perfect phrase I could have ever heard. That was exactly what I needed. THIS SUCKS! So I then sent an email to our friends and family:
Hi everyone,
Some of you may already know about Dominick. For those of you that don't Marty and I took Dominick to see his pediatrician earlier this year regarding concerns about his development and speech. She
recommended a Behavioral Specialist for us to see. We filled out the papers sent to us (wow was that a lot of paper work and questionnaires). Due to his high demand we were not able to get in to see him until this past Thursday. After talking with us, a neurological exam and him playing and trying to interact with Dominick he gave us news we were not expecting at all. ASD, AUTISM SPECTUM DISORDER. We were prepared for Speech Therapy but not AUTISM.
Is my child going to grow up with a normal childhood? Is my child going to not talk and rock back and forth? Is my child going to be able to have a family of his own one day? Will my child play sports? All of this plus a million other questions flooded us all at once. Will my child ever say to me, "Mommy I love you"?
What causes it? We do not know. Chances are there is a hereditary factor in our case. We do not know. How bad is it? I don't know. I see things happen some days that make me scared and the next day I don't see them. Does he communicate with us? No he does not. Does he hug me? Yes he
does. We are going to be going to a Speech Therapist and an Engagement Therapist. We will be trying to find a Mother's Morning out program that can help with him.
How severe is he in the Spectrum? We do not know.
Here is what we need! We know that you all love us and Dominick very much. We know you all think
he is a perfect little boy. He is well behaved, beautiful, and smart and has been so great about sleeping in his big boy bed and sleeping through the night and so on and so on. And you are all right he is all of these things and so much more. Then there is also the side of his story that all of you do not see that we see as his parents. His love of watching ceiling fans, watching running water, repetitive movement of his hands and arms, running around in circles, spinning, banging his head on the couch over and over, staring off into space, not answering us or acknowledging us when we call his name, not communicating with us, not asking us for anything, not saying Mommy or Daddy, not playing with other kids at Gymboree, not participating in activities at Gymboree, parroting words and actions, and a thousand other things.
I know that a lot of people have a lot of strong opinions on autism. You are allowed to have them. Right now all we need is to know you love and support us and think that this sucks. My friend Mike put it the best, "I do not know what to say. This Sucks!" That was perfect. Thanks Mike.
We hope to have more answers soon and we will probably always have more questions than answers. We pray that he will be that child that gets help and out grows it. Diabetes... Insulin Asthma... Inhaler Autism...???
On Friday the CDC released a report that now 1 out of every 110 children will be diagnosed autistic with 1 out of every 70 boys. They are now saying that it is a Public Health Crisis.
We are so lucky to have such wonderful friends and family in our lives. Everyone hug your loved ones. Kiss your kids and play a game with them. Have a wonderful Christmas and please count every blessing in your life.
Thanks everyone,
Deva & Marty Chirico
So now everyone knows. Battle one down. Bring on the next challenge.
The Day My Son Was Diagnosed My Life Was Changed
I had concerns about my son. I take him to Gymboree. I noticed that he wasn't hitting all the developmental milestones that other kids were. He will talk, but not in sentences and he never asks for anything. He mostly just parrots what we say. He doesn't point to anything. He loves circles, walking in them mainly. He has his own language of gibber gabber. He is fascinated by water and ceiling fans. And a million other things.
I took him to see his pediatrician back in July of 2009 and she referred us to a Behavioral Specialist. We weren't able to get an appointment until December. We went to see the Specialist. After answering hundreds of questions and him playing with Dominick for a few minutes he left the room. I was expecting that we would need to see a Speech Therapist. Easy. I was in no way prepared to hear what came out of his mouth when he walked back into the room. "Your son is autistic" WHAT?When someone is diagnosed with asthma you give them breathing treatments and an inhaler. If someone is diagnosed with diabetes you give them insulin. I am in no way saying that I wish my son had asthma or diabetes instead of autism nor am I saying that it is an easier road to go down. When someone is diagnosed with autism???
The Behavioral Specialist told us to contact Autism Speaks, get him into Speech Therapy and Engagement Therapy. Who do I call? Where are these Specialists? What do I do? Basically what I got from the person my pediatrician sent me to for answers was, Your son has autism. Good Luck.
So I call back my pediatrician to find out what I should do next. She basically informs me that she sent me to the Behavioral Specialist and that he should tell me where to go next. Great I now have two medical professionals with zero knowledge on how to help my autistic son.
I got in touch with Autism Speaks. Best thing I could have done. They have a package called The 100 Day Kit. Basically it helps guide you to get through the first months after you have been diagnosed. They also helped my find the SC agency Baby Net.
My heart has never felt so broken.
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