You might have read Zoey’s posts on her familial dysautonomia, and if you haven’t, you should definitely check them out. As the mom of a little boy with special needs, I thought that it might be interesting to read more about what it’s like to be the parent in this situation.
For starters, my little boy is now 9-years-old. I adopted him when he was 14 months old from foster care. He was a 31-week preemie, born weighing 1,500 grams, which is just about 3 1/4 pounds. He spent his first 3 months in the NICU, then went straight into a foster home. He lived in the foster home for almost a year before I got the call that there was a little baby waiting for me to adopt.
When I was going over his files with the social worker before I was able to meet him, I was completely overwhelmed. There were hundreds and hundreds of pages of medical notes. From what I could gather from these papers, he had a few diagnosed problems: Retinopathy of Prematurity, Sleep Apnea, Plagiocephaly, Gastroesophageal Reflux Disease, and Failure to Thrive.
I took down all of the phone numbers of his specialists, of which there were around 8 or 10, and called them all to see if this was something that I could handle or not. The general consensus was that he would catch up to his peers eventually. I’m still waiting for that to happen.
Things were very difficult in the beginning, more difficult than I could have imagined. Even though my son was 14 months old at the time I adopted him, he was very similar to a newborn baby. He could not crawl, cruise, stand or walk on his own, he had never spoken a word, and he was still on formula and not table foods or even baby foods yet.
Since he was my first child and I didn’t have any younger siblings, I didn’t truly realize how behind he was. Now that I have had 2 other children including a 14-month-old baby right now who is mostly on-target for his milestones it’s amazing how different life is being the mom of an “average” kid versus a “special” or “disabled/differently abled” kid.
My first couple of years with my oldest was a whirlwind of meetings with doctors and specialists, Early Intervention, play therapy with other disabled children, nutritionists, and the struggles of getting enough calories in him so he would live. He just wouldn’t eat.
At one point the pediatric gastrointerologist and I discussed putting in a feeding tube, but after sending down a scope and weighing the pros and cons it was determined that it would do more harm than good in his situation. Luckily, shortly after that meeting he started gaining a few ounces here and there and the feeding tube talk was dropped altogether.
Up until he was around 7 years old he was getting 90% of his calories from Pediasure. He’s now getting about half of his calories from Pediasure and half from food. He’s always been in the “0th” percentile for weight, and I’m happy to say that he’s worked his way up to around the 2nd-3rd percentile.
To be honest, I’ve always felt a lot more like his nurse or caretaker rather than his mom. It’s been very difficult, and we’re working through it in therapy. I’m hoping that now that his eating habits and weight have normalized somewhat that things might improve.
Last year he went in for a global evaluation with a pediatric specialist. I was on the waiting list for over 9 months, but it was worth it. From that series of evaluations, I was informed that he has a learning disability, ADHD, and a host of other smaller issues. This might not sound like the best news, but it was actually very helpful.
He’s now on medication for his ADHD, and is doing much better in school. He’s already been held back 1 year in school, hopefully with his medication and the adjustments that have been made to his IEP from the evaluation things will improve even more for him.
In conclusion, it’s pretty difficult being a mom, and when you throw the special needs in there it makes it even harder. However, as I’m sure that Zoey’s mom would agree – we wouldn’t trade our kids for anyone else.
Thanks for reading.