Some days I wish the rest of the world could see how hard it can be having an SPD child. From the outside looking in, it doesn’t look like the big deal. You hear the age old “He’ll grow out of it.” or “Well, it doesn’t look like anything is wrong with him!”
Explaining SPD to someone who does not know of it is akin to Doc Brown explaining to Marty how the flux capacitor works. You can use big fancy words, you can dumb it down. But unless you invented the flux capacitor or in this case, live with an SPD child, it’s nearly impossible in some cases.
I feel like I was fairly fortunate to go down the paths in life that I did. When my oldest child was 7, we had to take her to OT for fine motor skill work. Her hand writing was not great, but it was her piano teacher who noticed the lack of strength in her fingers. We had a revolving appointment and like most of you know, in those waiting rooms you see the same faces weekly. It does not take long for you to get to chatting. The one woman I had the pleasure of meeting had a son with SPD. She explained to me what it was, the signs they had seen along the way, the mystery surrounding why her son was the way he was. The term, sensory integration disorder as it was referred to more commonly at the time, was so foreign to me. I had never heard of it, much less interacted with a child with it. At the time, my son was not quite two and the majority of his behavioral concerns were chalked up to the terrible twos and the more common “he will grow out of it.”.
Fast forward two years when JD suffers his first status seizure at almost 4 and I finally just stop taking “he’ll grow out of it” as a diagnosis. Two years after, I have become an amateur expert in the field.
I feel like now, I can explain it to the best of my ability, but I have to remember that not everyone is going to get it or understand fully. They may see JD go into sensory overload and sadly, some may still think he’s just being a brat. Some may totally get it completely and accept him for who he is. I have noticed though, that those people are family, close friends that have watched him grow up and those with a background in special education.
This can be problematic, sadly. It can be very difficult to forge friendships. Some people are not going to understand why you can’t make a play date because your child is having a bad sensory day. Or maybe why you have to cut a play date short because your child in on the brink of overload (we know the warning signs don’t we?). Not to mention last minute plans. Oh, last minute plans are tough with a child who is not fond of sudden transitions. In my case, I find it hard to do public outings with all four of our kids as our son requires a lot of attention some days.
Parents of other children don’t seem to understand, truly, why you child gets so distressed in certain situations.
Case the in point, the pool. My son spent the last two years hating water. Would not get in it. Would scream at first or hold on to you with the death grip when in the water. This year, we have had a nice shift. He likes the water now and loves to go and is quick to get it. The splashing however, he doesn’t like. So I do my best to present it to JD when splashing is appropriate and not appropriate. Enter the tease. The tease is not to be confused with the bully. The tease can turn into the bully with out proper guidance from the parent however. But tease status is not always indicative of bullyism later on in life.
Every year there’s one.
You know him.
He’s the pain in the you know where.
He’s the one always getting chastised.
Well, we had one recently who was insisting on splashing everyone in the pool. Whether it be a surreptitious attempt or not. He figured out real quick that JD did not enjoy of a good splash. In lieu or a “hey cut it out!” or “stop!” JD would get very angry and cry out. Tease loved this. Tease had hit the jackpot. Tease continued to splash every chance he could. When we moved to the other side of the pool Tease followed. With each splash it was a mini meltdown and me calming JD. Finally, I had just about had it with the polite gesture of the the passive approach when I said to the child, kindly, “Would you please stop splashing him, he really doesn’t like it.” Tease went away for a while, but alas Tease was hooked and needed a fix and back to us he came “innocently” splashing in, but I knew what he was up to (Mom of four as well as youngest of four, this ain’t my first time at the rodeo!) Two more screams later I got firm. I looked at him and said directly “I don’t appreciate what you are doing, you need to stop and go play elsewhere.” Tease was scared. I don’t like to correct other peoples children, however a parent was no where to be found. Well, Tease came back. With parent. Parent was not pleased with me. I explained to parent what the problem was, leaving out why it makes JD so upset. Thankfully, parent understood and Tease had a time out.
It becomes hard sometimes. It makes it hard to want to take your child places he deserves to be or deserves to go to. I would love to take the “I don’t give a care what anyone else think!” mantra. No one likes to be judged. Oh and we know the looks. Do we ever. Drives my 11 year old mad when people stare at her brother when he begins to hit himself amid overload.
I suppose the take away here is simple. Like many epileptics say “I may have Epilepsy, but Epilepsy doesn’t have me!” I feel like this must be the mantra of the SPD parent as well. We can’t let it run our lives. We can do our best to advocate and educate, but bear in mind that we may not always have willing or understanding pupils. We must do our best to put ourselves out there and remember that sometimes it may not pan out the way you hoped it would and that you have to just have to try again and hope for a better outcome.