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.
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Thank you so much for posting this. My son is at risk for ASD is waiting for professional evaluation. He is already in speech therapy and occupational therapy. We do not know for sure if he will receive the ASD dx, but it has been in the back of our minds for months. Although he is making progress, both my husband and I and his therapists question his behavior. The hardest part is watching everyone judge my son. Why does he do that? Is everything ok? Does he understand what you say? Wow, that is strange. These are things I have heard from family members. It is so difficult to constantly defend everything he is and is not doing, along with providing him the proper sensory activities and speech exercises that (normal) children know nothing about. My husband and I have chosen not to tell anyone about our sons therapy until we receive or dont receive a dx. I know everyone is concerned because they love us but their judgments can seam harsh. No one in my family has a child with special needs, speech delay or other delay, so how can they relate or understand? So many people have only one image that pops in their head when they think of Autism; that my son is stupid, he will never speak, ect. And if they really knew him like I do, they would know that is not true. I just dont know how to sit down and explain all the elements to them when I myself am learning more everyday. Telling family and friends should be the easy part in this long battle. So why is it so hard for me? I envy your courage and I like your idea of a group email. I may do the same one day soon.
ReplyDelete-Another Mother in your shoes