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.
Monday, June 28, 2010
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”.
Subscribe to:
Posts (Atom)
