Let the madness begin!

So here we are.. day 2 of 2012… As I sit here in my kitchen staring at my sink full of dirty dishes and the folded clothes fresh from the laundromat patiently waiting to be put away I begin to feel that familiar feeling panic slowly washing over me as I anticipate the madness that waits for me this week.

For starters I go back to work after being off for a week and a half.. Yeah I know.. “Awww.. Poor baby!”
Yes I know I shouldn’t worry about things that haven’t happened yet, but this is my nature.. My achilles heel of sorts.. I worry about money, my kids, my husband, the cat, my coworkers, the world, the universe… You name it!
This week though, I think is justified.
Eli has his intake assessment at the out of district school we have been advocating so hard for him to get considered for. What’s the big deal you ask? Well Eli is renown at every doctor’s office, clinic, and school that we have taken him to for being demonic during his evaluations. Trust me, demonic is an understatement. It’s as is he has a little internal radar that alerts him when there will be more than one person in a room (excluding mom and dad) that will be determined to make him jump through hoops and do tasks that he has no interest in performing. I can’t say I blame him though. Eli has been consistently poked, prodded and analyzed since he was about 8 months old.
I’ll try to keep this story as short and simple as humanly possible. When little man was born I noticed that something was not quite right when I watched the hospital picture lady trying to his body to cooperate for the little bassinet picture.. You know the one? The picture that gets taken a few hours after they are born and they look swollen, cranky and red. Anyway she kept trying to get him to look at the camera, but he kept stubbornly looking to the right. Shot after shot she would tilt his face and rush to take the shot before he moved it again. After literally 10-15 failed shots she got this pic.

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Worry started to well up inside of me as each failed shot was taken. Why wasn’t he looking at the camera like all of other babies before us had? Like his older sister had 3 years before him? Why was his right arm kind of limply hanging there? I looked over at Hubby and whispered to him, “Hon is this normal? Boogie didn’t do anything like this? Why is his left arm just hanging there?”
Hubby, always the voice of reason to me when it came to my worrying said, “Babe, all babies are born looking and acting weird… They are still getting used to their environment.”
With that I let it go. After all wouldn’t the hospital have told me if something was wrong?

Fast forward to Eli at 7 months old. Aside from thinking that he was a really cranky baby and that he had an unexplained hatred of tummy time I didn’t think anything was out of the ordinary about him. Whenever I did feel a twinge of concern it was immediately hushed by a family member telling me about some cousin that I had never heard of before and how they were weird and cranky when they were babies. Here is my cranky baby boy..

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However, when I noticed that Eli was only using his left hand to play and that he was still having a lot of trouble rolling over, sitting up, etc etc .. I decided to take matters in my own hands and go to a neurologist and call early intervention. After the endless battery of tests it was determined that nothing was wrong with his brain, nor did he have fragile x and all the other stuff they tested for.
She did notice a bit of a weakness on one side of his body though and attributed it to his fetal position when he was born. Early intervention and the neurologist diagnosed the term that I would come to dread with a passion: Global Developmental Delays. Basically your kid is not typically developing in anything and we have no idea what could be the cause of it. Eli started off at 8 months old with speech therapy, developmental intervention and occupational therapy. I wish that was the end of the story, but not quite. He hated most of his therapist and would just cry for the whole hour. That is when the second dreaded term came: Sensory issues (autism?)
It didn’t help matters that he wouldn’t answer to his name and that he liked to sit in his exersaucer and spin the stupid spinning apple! That was around the same time that I started feel myself sink deeper and deeper into depression.

I became completely absorbed with fighting for more services, new therapists, better doctors. However, something that I am ashamed to admit started happening… I started to feel resentful to Eli. I always made sure his basic needs were met and that he got all the treatments he needed, but I couldn’t bare to play with him or hold him and hug him.. God bless Hubby for dealing with me then. He took over in the love and nurturing department for Eli. He always would insist to me that nothing was wrong with Eli. That he was perfect. I would just shake my head and keep plugging away at finding answers. Now I realize that Hubby was right.. Eli is perfect just the way he is. It’s just the world around him that is imperfect. That realization, however, did not come until 2 years down the road.

To speed this story along… Eli agreed to be merciful to a group of wonderful ladies that would be his therapists until he turned three and transitioned out of EI. With their help and tubes in his ears at 15 months (It turns out that he had excess fluid in his ears preventing him from hearing people and equilibrium) little man very slowly but surely started progressing.
Here’s the condensed rundown of his milestones..
8 months: Sitting up unassisted
11 months: Crawling (with hands closed into fists due to sensory issues with carpets)
15 months: Bilateral tubes so he began answering to his name. Eye contact improved.
16 months: Walking
Socially and physically, much to my relief Eli started catching up in leaps and bounds.

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Feeding and speech stubbornly refused to progress however. He was still eating jarred baby food at 3 and a half and to me that was not acceptable. Three months before his 4th birthday he went to St. Joseph’s Feeding and Swallowing Clinic and that did the trick. After many agonizing, infuriating, tearful sessions Eli now eats almost anything. We still have issues with some finger foods, but we’ll get there! Eating solid foods and utilizing his oral muscles more enabled him to start babbling and approximating more. While there I took him to a wonderful developmental pediatrician that told me what we knew all along. Eli is not on the spectrum, but does have severe dyspraxia. With the intensive therapy his prognosis can be very good. He will have this monster forever invading his body, but if he is taught to combat his frustrations he can do well in life. When we took him to the speech therapist for a more intensive post-EI eval she found apraxia with mixed expressive/receptive language disorder.

So here we are 2012 and we now have a name for this pain in the ass that invades my son’s body. Apraxia…The monster that causes him such anguish when he tries desperately to get his point across to no avail. Apraxia has kept my son from telling me, “I love you Mommy” clearly. However, it has given my son determination that I have yet to see in other kids his age. I can see that when he grasps and says, “Ahh ohhh oooh Mam.” (Hearing that brought one tears to my eyes 🙂

Apraxia may be here to stay in Eli, but it will NEVER win. Yes, Eli may always struggle with different things, but I have hope that he can lead a happy, productive life. The first step on my list is getting him into this full day, inclusion out of district school. A place that will have the time to work with him on his speech and his frustrations. Apraxia also pissed Mommy off enough that I have decided to go back to college and pursue a degree in social work. I have seen so much injustice, but have been taught so much by the other warrior parents out there that I want to make a difference. So Mommy goes to college orientation this week and starts 4 classes next week.. Oh boy.. Here we go…

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The burn / The call to action

There are very few things in life I was definitely CERTAIN that I wanted to do or that I BURNED to do. I knew that I wanted to be a mother and I knew that I wanted to make a difference in the world, but I wasn’t sure how. After all, I am not gifted at anything in particular… I am not an amazing artist or musician or writer. I am ok at moving goods from point A to point B or getting a good rate on freight, but woo hoo! Hey, not everyone has to be renown for having that ‘burn’ for something. So I had my daughter then my son and I thought that was my calling; being the best working mom that I could be. I was ok with that. Then my son Elias threw me a curve ball. Little by little after he was born I started realizing that something was not quite right.

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I couldn’t really put my finger on it, but I could tell that he was different. Everything took him way longer to do; from sitting up to eating solid foods to just talking. Starting at 8 months old there were endless neurologist appointments, developmental pediatrician appointments, early intervention, speech therapist and occupational appointments (just to name a few). Everything from possible autism, MR, CP, etc etc was thrown at my little guy. What did I do for 3 years? I cried, ripped my hair out, lost 50 pounds and almost lost my job. I wondered why me? Why my little boy? I didn’t understand where to begin or how to fight to get my son the help that he needed. I felt like a failure. Then one day I met Portia at the feeding clinic. Elias was still eating jarred baby food and he was almost 4 years old.

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I was a hair away from getting divorced and it was a miracle that I hadn’t gotten fired for all the work I had to miss due to Elias’s appointments. Portia was a single mom to 3 sons; two of which had autism. She could sit there and cry like I had been doing for years, but she wasn’t! She amazed me every morning how she would whirl into the feeding clinic perfectly dressed, looking like a model out of Ebony, full of laughter and smiles and with something else that is imperative, hope. She sat down with me one day and took out her little black book full of precious resources and told me who to contact to help my son. She gave me advice and she shook me awake. Portia made me realize that just because my son was different didn’t mean that I shouldn’t plan for a great, productive future for him.

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Most importantly she lit the first spark of passion in making me want to do everything I possibly could to advocate for my son. Since then I have taken every course imaginable on how to advocate for not just my child, but all children with special needs. My school district learned that the bawling parent they had in front of them for Elias’s first IEP meeting was no more. There would be no more pushing around Eli and Jen M. My little boy has taken me down paths that I would have never ventured through before. I would have never met someone like Portia or even cared enough to learn about children with special needs like I do now. Ok so I am not an artist or chef or writer. I do however, ‘burn’ to help others. I want to empower, educate and help other parents the same way that Portia helped me. Elias is apraxic, non-verbal with global delays, but I want to help children and their families no matter what the disability.