The A Word

So I made an appointment with his regular doctor and we discuss everything that has happened over the last three years with his development and my concerns. The agrees and states the he shows multiple characteristics of Asperger’s Syndrome. One of the many conditions that is covered under the Autism Spectrum Disorder Umbrella.

However she isn’t a development pediatrician so of course we get a referral to one. Sad thing about getting to the Developmental Ped is it takes MONTHS and I’m talking like 8 months exactly to been seen. We finally get in, at this point Garien is 6 years old and in kindergarten. March of 2014 was the first time Garien’s medical records would list ASD (autism spectrum disorder) Now anyone whos ever gone though this knows that there is one more very important appointment after this where the child under goes an A-DOS screening. Its pretty much the gold standard for any ASD diagnosis. And much like my first appointment you get put on a wait list. Some parents have waited up to 18 months for this screening which is more or less a glorified play date. I was one of the lucky parents who won’t talk waiting sitting down. I called the office every other day asking if there had been any cancellations. I even told them I would drive to ANY office, which is where I was saved. They had a cancellation that happened minutes before I called in, but was at their office that was nearly 2 hours from my home. I however didn’t care I took it.

Garien was diagnosed with ASD March 2014 and it was confirmed July 2014. Now you have to imagine every parent thinks about their child future and we all have “plans” After the struggle I had with Garien in the beginning and how he fought so hard to stay alive I knew my son was going to be a fighter which meant that in the dreams I had for my son he was going to go to college get an amazing degree in whatever field he wanted. And I knew he would because he wouldn’t take no for an answer.

In March I came home from that appointment and I cried for hours after Garien went to bed. I felt like I mourning the loss of my sons future. (Now don’t get me wrong their are plenty of extremely successful Autistic members of society so my son’s life isn’t over.) But in that moment all I could think about was what can I do to make his life easier what expectations am I suppose to hold him to. Will he grow up to be that child of my hopes and dreams. Will he ever get married and feel the love that I have in my life. Will he ever know what it feels like to watch his heart walk in front of him.

I allowed myself that night to grieve any loss that I thought I was feeling. And when I woke up the next day I was a different person. I decided that Garien will have that life I dreamed for him because he has everything going for him. Hes really smart and sure he has struggles but I know what he needs now so I can help support and push him when no one else will.

I decided to use the mantra “My son is autistic, he’s not suffering from autism” I know there are 100’s of thousands out their who are searching for a “cure” and I guess you could say I’m lucky because my son has a moderate case of autism, so he speaks and he can kind of function in a normal society so maybe my view is skewed.

But my son isn’t broken, he doesn’t need a cure. He needs skills. I have anxiety, I have coping skills to help myself with I have an episode. And that’s what I’m going to stress to my son. Sure he has some limitations, he doesn’t like the sunlight because its bright and hurts his eyes, so he has sunglasses. He loves to watch me cook, but can’t help because if the food touches his hands and its the wrong texture it sends him into a panic so we bought him gloves and now he can make cookies with me. The world isn’t going to change for him, so I need to give him all the skills I can to help him make the most of his life.

If I Can’t See It, Then It’s Not There

So fast forward another 6 to 8 months and I’m looking for any other reason why my son is speaking anymore. I took him to and ENT because I suspected that he was tongue tied. Good news was that he was and need a minor procedure where they clip under the tongue to allow it to move more freely. The bad news was of course that wasn’t what was causing my sons problems.

I then got in touch with the local school to discuss their early intervention options that Garien may qualify. The school did a complete comprehensive evaluation and of course that A word was brought up again. They also recommended he see a specialist. But in the mean time he qualified for the early intervention program, he was given a developmentally delayed label and started school a year early.

Putting Garien in school was perfect for Garien. He flourished in the environment. It was stable and structured and he was extremely smart. Slowly Garien’s loving affectionate came back, at least for the people who had it prior. But his eye contact struggled.

After Garien’s first year in school it became apparent that I was doing my son an injustice. He was struggling with things that came so naturally to other children his own age. He couldn’t develop relationships with them, hell he didn’t even know how to play with them. He would just stand back and watch them play, you could see that it made him happy. But you have to then ask yourself, wouldn’t be he happier if he actually played with him.

I had to take a step back and ask myself probably one of the hardest questions I’ve ever had to answer.
“Is this any better?”
I was afraid of the stigma Garien would go through if others heard he was “autistic” but watching the other parents stare at my son and how the other children would avoid him. It hurt me so much. Garien didn’t notice, he only sees the good in people. So he didn’t realize that when other moms would shoo him away from their babies that they were uncomfortable they thought there was something wrong with him. He didn’t know that when those children laughed they were laughing AT him and with him.

I finally called the doctor. Garien was nearly 5. I failed my son because I knew when he was 2 and didn’t do anything. So I waited another 3 years because I was worried. I can’t imagine the progress he would have made in those 3 years. And it makes me sick.

But whats sad is this story gets worse at least from my personal opinion.

The Calm before the storm

After Gariens rough start things smoothed out. I was happy he was happy and life went on. Garien didn’t meet all his milestones on time but that was to be expected given that he was preemie so the doctors weren’t that concerned, everything else seemed normal. His first word was delayed to nearly 9 months he said “Ma” I can’t even begin to tell you how that made me feel. After everything I went through to make sure he was happy and healthy and he knew who I was!!

His speech didn’t progress a great deal, never anything more then 2 syllables and very simple. He crawled late, we walked late. But once he took to something it was like he’d been doing it is whole life. I knew that my baby was going to be just fine. His teeth even cut late. But once that first one came through he practically had a mouthful of teeth within the week.

And then something happened. I put Garien in daycare while I got a job outside the home. The daycare worker came to me and started asking me questions. Like does he always walk on his tip toes? Why doesn’t he look anyone in the eye? Did you notice that Garien gets upset when he hears certain noises or lights? She recommended I get him in early to his doctor (his 2 year check up wasn’t for three more months) and then also gave him some info the public school offers for early intervention.

After that conversation I called the doctor and got him in as soon as possible. We talked about his behavior and how lately he didn’t want to be held anymore. How he stopped trying to talk almost completely how he’d stand and spin for mins on end but never smile. We did a few basic preliminary tests which he failed miserably. And this was when his doctor said the A word. The doctor said that Garien was showing symptoms of autism. And she recommended sending him to a development pediatrician.

Now this is where I feel that I failed my son.

I didn’t take him to that appointment. After listening to the doctor I remembered all the “special education kids” I knew growing up and I knew that my son was just fine there wasn’t anything wrong. But I wasn’t right, I was afraid. Afraid of what other children would say about him, how people would treat him differently. I knew in my heart that my son was going to be an amazing human being and I didn’t want him to have to live with the stigma of that diagnosis. I was stupid.