Charlie is exceptionally bright. He is a savant with the piano, could read and was completely potty trained by two. Because he was our first any family or friends that told us how smart he was, I believed, was just making small talk. He is a very loving and caring little boy.
When Lucas was born, I knew almost instantly, something was wrong. I couldn't get him to latch on properly. His toenails were shaped funny. He would gaze into space and I would have to cover his eyes to take him out of his stare. He never wanted to be held. He almost appeared to be in pain by being touched. I could not, no matter what I did, comfort him. I would go for his normal well visits to the pediatrician and just cry because he never stopped crying. He never slept. I was exhausted. At his 12 month visit I told the doctor I believed he was deaf because noise never affected him. I could bang a pot behind his head and he wouldn't even flinch. He did a little hearing test in his office and he failed miserably until the doctor went right behind his head and waved a bell. The first thing out of his mouth was I need to you sign some paperwork so that you can't sue us for giving him his shots since people believe these shots are associated with autism! I was beside myself! Needless to say, I left in tears, no shots, and completely confused.
In my heart of hearts I just felt like it couldn't be Autism. Our nephew has autism and they just seemed so different. I knew nothing about autism. I was completely ignorant to any facts about it and was on a mission to find out how to save my baby!
I immediately did everything they said I needed to do.
Sign up for Early intervention.
See a neurologist
Get blood work
After all was done I was supposed to go back to get a referral for an ENT.
When I look back I wish I would have been more persistent with giving me a referral for the ENT first but I believed they knew what they were doing.
Early intervention came, saw the red flags, signed him up, and began treatment. He gets therapy from some of the most wonderful people I have ever had the pleasure of knowing.
The wait for the neurologist took forever. I almost felt like this was the biggest news that I ever waited for in my life. Our whole life depended on the words that would come out of his mouth. I know its not true now, but while your going through it that's how you feel. I kept praying for no diagnose rather than having one because if he didn't have one at least we had hope. Once diagnosed, we had to deal with it, irregardless of what we believed. He saw him and would not give him an autism diagnoses but said he believed he had ADHD and that he needed to come back in a few months/years for an official diagnosis.
At 14 months we took Lucas back to the pediatricians office because he still wasn't talking, we never saw his tongue, and he couldn't eat normal food. We asked them to look at his tongue and we were told that they couldn't because he was too uncontrollable. I accepted that and feel guilt everyday that I didn't push the issue and make them look at his tongue!
At 18 months, one of his therapists, was seeing me feed him a banana and asked why he had to eat it mashed up and I told her he still can't eat solid food! I can still see the look of shock and disbelief in her face. She asked me if she could look in his mouth and I said ABSOLUTELY. We tried to get his pediatrician to look but he wouldn't. Instantly she saw he was tongue tied. She told me to demand a referral for an ENT visit immediately. When I called they told me to take him to get a hearing test before our first appointment and he failed miserably. Our first visit with our ENT was on Friday and Lucas was having surgery on Monday to clip his frenulum, and to put tubes in his ears. His ears were so filled with fluid that he was basically deaf for the first 18 months of his life. OMG! I cried everyday for weeks. My baby has been deaf and mute and I did nothing about it.
He had his surgery in October of 2009 and by January 2010 he passed his hearing test. I took some time for him to completely drain out and hear properly.
After many months of therapy with Early Intervention, they believe that what Lucas was experiencing was Sensory Processing Disorder. He fit every symptom in the books! It hit home when the therapist put play dough in front of him and when he touched it he started gagging and almost threw up. Whenever we use soft textures for therapy its a huge deal. I never saw a child act like this before in my life. It was all so new to me.
The meltdowns are unbearable! I can't tell you how much of an effort it is to just go on an outing. I am a strong woman but I can't tell you how many times I've broken down because of the comments and stares I get because of his behavior. I know what's wrong with him. I know his struggles. I can't help but feel as though when we're in public I need to explain why he is the way he is to people so that they just stop with the comments and stares!
Our life is a struggle having a child with SPD and I almost felt compelled to tell our story and share our tough times with other families that may be dealing with the same thing. Know that you are not alone. There are a lot of us out there with children who have SPD who know how hard it is and want to give you that hug when you need it.
I am looking forward to sharing our journey with you and thank you for wanting to follow our journey with us.
Labels:
Posts
