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!
Thursday, February 18, 2010
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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