Do I have a special needs child?

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Joey after his surgery, almost 5 months old

Do I have a special needs child? The short answer is: I don’t have a damned clue. I’m not even sure what special needs means anymore. I know that when people ask questions about my child, they want to know exactly what the problem is, and that it’s been solved. I’d love to know that, too.

My son, Joey,  is 7 months old. He’s our third child, and since the beginning he’s been an adventure. During his first bath, I watched as he stopped breathing. Doctors, nurses and medics rushed in. Soon after, he was in the neonatal intensive care unit. A few days there, and a few more in the hospital room with us, and we took him home. About a week or so later, he was admitted to the hospital for “failure to thrive.” Simply put, he was losing weight. He had low muscle tone. Tests, tests and more tests. The first thing they hit us with was that he exhibited symptoms for Prader-Willi Syndrome. Googled that. Panic.

Two long months later, we found out it wasn’t that, after all. Meanwhile, Joey still wasn’t eating or gaining weight. In went the nasogastric tube. The small tube went up his nose, down his throat and into his stomach. We had a pump, syringes, feeding bags. Our house turned into a medical supply store. Oh, and more tests.

Eventually, the nasogastric tube came out, and the gastric tube went in. No more nose and throat nonsense; now the kid has a port right on his abdomen. Plug and play. At the same time they installed that, the surgeons performed a Nissen fundoplication, to fix his reflux issues. Now he can’t throw up. He can’t burp, either. You have to vent his stomach through the feeding tube.

Here we are at month seven. He’s now eating rice cereal and some baby food. He loves vegetables, but turns his nose at fruits (weird kid). Joey gets about 10 percent of his food by mouth, and the rest is pumped in through his feeding tube while he sleeps at night. For months, he wasn’t even on the growth charts, but now he’s sitting strong in the fifth percentile. He’s a little behind on physical milestones, but slightly ahead with cognitive and communication milestones.

Back to the original question: is he a special needs child? It sure doesn’t feel like it. Yes, he has more doctors than I can count, plus physical and occupational therapists (and they are all amazing). We know that, without modern medicine, he would not be alive today. Yes, he has an IV stand next to his bassinet to hold his feeding pump and feeding bag every night. Yes, he’s been to the hospital more than anyone in our family… combined. We don’t know what the problem is, what it’s called, or why he has it. We don’t know the solution. We take it a day at a time and accept it as the new normal. We hope that it’s a rough start, but we really have no idea. What we know is that we love him, and that he’s damned cute.

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2 thoughts on “Do I have a special needs child?

  1. I know we’re not close. But I could’ve written this. The interesting thing is, that I’ve noticed about my own adventure, is that there are number of us moms who have quirky kids. And we don’t always talk about it but not for the reasons you might think. It’s because we think about it all day and most of the night. And we’re all talked and thought out. Talking about it more is exhausting. Some moms with news special quirky kids feel alone and looking for answers or more questions are met with sighs from those of us with older quirky kids.

    Because it’s hard to reminisce the early days due to lack of memory or probably lack of sleep. However if you feel like chatting or need something you know where I am and I’ll be happy to listen even if I don’t have anything to say.

    And Joey is super, duper cute! But you knew that already.

    (My quirky guy has completely stolen my heart and loved in such a neat way the same amount but differently than his brother — all I can say is this is okay if you feel similar)

  2. Damn Adam, I had no idea. I’m glad he is doing better and he is super cute. My close friend is also struggling with a “problem” like this. Her son, now a year was in the NICU for a week when he was born because of low sugars. A year later his head is in the 99th percentile while his body is the 33rd. He can’t sit up for long periods of time without falling over, he can’t feed himself, he barely crawls, and he hardly talks, and he is behind cognitively and on his motor skills. She has been taking him for all kinds of tests and all the doctors can say is we don’t know what is wrong, he may just be lazy. Don’t you love when doctors label your child as lazy when he is only 1? He is absolutely adorable and we all love him as much as their other child. Definitely take it one day at a time and change peoples mind when they ask if he is special needs; Say no! He just needs more love!

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