Loving a special needs child cannot be fully explained using words. It’s like a crazy I’m going to burst because I have so many feelings I didn’t even know existed type of love. For me it’s even stronger than the love I couldn’t fathom having for another human until after I had a baby. Most parents can relate to that love.
So my son just turned four and he’s the oldest of our two kids. He is so loving and sweet. He has THE best laugh on the planet. Our home is so full of joy with him around it’s unbelievable. But with that joy comes frustration.
My little guy has sensory processing disorder, developmental delay, and suspected autism. He’s high functioning and very intelligent but easily distracted, flustered, and is just learning to communicate. He also gets very distraught and loses all confidence if he can’t do something the way he feels is right on the first go round.
I am usually pretty positive at least I try to be, but I’m having one of those days. A ‘my heart hurts’ kind of day. Here’s some background:
On our second day home from the hospital we knew our baby had colic. Talk about ripping your heart out. Our sweet bundle cried and cried and cried. He didn’t just have a few fussy hours each day, he literally cried nonstop. Which meant he barely slept, which meant we slept even less. He cried and grunted and pushed so much that he gave himself a hernia. Suppositories were his only relief and only lasted about 25-35 minutes before everything started up again. (I am convinced colic is from an underdeveloped digestive system.) Anyway, it was so trying but he started growing out of it by 10 weeks or so.
Enter ear infections. By eight months old our sweet baby had had 10 infections and we were scheduled for double ear tubes. There was so much fluid drained from those little baby ears. We thought things would be taken care of, however, fast forward many more infections and 10 months, and we were testing the nerves in our little guy’s ears to see if he was deaf. Things checked out fine (normal hearing loss from tubes) so new tubes were inserted. There was so much fluid still trapped inside that it was preventing sounds from registering properly. We saw improvement right away after surgery. Our 18-month old was beginning to turn his head towards sounds and to babble, but there were serious issues with eye contact. We began in-home speech therapy services and did development assessments. It was hard to tell if testing fell a year below average due to hearing issues or if there was something more going on.
All kids have quirks and do funny things. Ours walked with his head tipped sideways, liked to be on his tip toes, chewed his finger nails, and was a runner. (I mean, the kid took off like a lightening bolt.) But we moms have this sense — and mine was on full alert.
Enter food sensitivity (or aversion). Seemingly overnight, our big eater of steak, fish, apples, chili, and almost anything we put in front of him refused nearly everything. His new diet consisted of pizza, hot dogs, peanut butter sandwiches, chicken fries, and sweets. Tantrums ensued and then came the hitting and the slapping if we tried to introduce anything else. Melt downs from ketchup and pizza sauce touching his fingers and cheeks started as well. We didn’t focus on the food stuff right away– we kept plugging along with learning signs to communicate thinking that maybe his inability to communicate led him to food aversion. Controlling his food because he couldn’t control or understand much else around him.
In Minnesota, in-home services stop once your child turns three years old. That meant we needed new assessments and led to an Individualized Education Program (IEP) for developmental delay (due to lack of communication). He was testing a year to a year-and-a-half behind schedule for communication, social, and a few other skill areas. It was time to send our baby on the bus to go to school. Mommy was a nervous WRECK.
I had horrible visions of my baby taking off and running away from the bus driver and from teachers and of him being scared and crying. There was most definitely some of that (okay, a lot of it) BUT preschool was quite successful and we made it through the year. In fact, the yellow school bus was a huge hit. Of course there were challenges but we handled them day by day.
It took a long while, but we’ve made a lot of headway. A third set of tubes were placed this past winter and they made an even bigger difference this time. Animal sounds are being mimicked and new words are emerging. I’ve heard words that have made me cry like daddy, luh-you (love you), and day-dee (baby).
We recently celebrated birthday number four and, you guys, I’m the one who received the gift. My peanut finally called me Mommy. I can’t begin to convey how wonderfully special it is to hear that for the first time. It’s the best name I’ve ever had.
Eye contact is getting better (except when he’s done something naughty or is ignoring us). We understand his tantrum triggers most of the time, and rely on visual schedules and a visual timer. Food hasn’t improved much but we’ve gotten better with our ketchup fingers. We’ve started occupational therapy, physical therapy, and have speech therapy at the clinic in town which amounts to appointments three days a week (in addition to the services at school).
I am so insanely proud. So what brings me to my current mood?
Well, we still struggle with behavior and transitions — going from one activity to another. Over the past few weeks it’s been brought to my attention that my sweet and sensitive boy is “the mean kid”. Granted, most people know he’s not intentionally mean, he probably just doesn’t understand, but that doesn’t ease the hurt I feel in my heart. I got a text from daycare that my peanut was having an off-day. Refusing to eat. Not wanting to ‘splash’ outside. Fussing and hitting.
I don’t know how to communicate to him that fun activities and experiences are being missed by him not listening and his hitting and pushing. He comprehends a lot — but there is still so much he doesn’t understand — especially social mores. He misses out on going to the pool with the other kids at daycare. We haven’t been to a movie theater. He doesn’t go on play dates. And we don’t let him run around outside like we want to. I don’t want him to miss out anymore.
I do know it will continue to get better with time. I know I need to stay positive and be patient. And I know my own disabilities get in the way some. It just gets tough sometimes. It’s not just my son who is learning– I am, too.
Even on tough days I would move mountains for him.
Screen shots, photos, and stories are edited to omit my little ones’ names. Thanks for understanding. ❤