Because I love him…

I normally don’t buy ice cream that has pieces or “chunks” in it, choosing instead even textured ice cream varieties like vanilla or maybe some sort of butterscotch ripple. If I do happen to buy ice cream with pieces in it, I manually remove said pieces before serving Julian a bowl. I once phoned my Mom, crying, and asked her when they started putting pieces of real strawberries in strawberry ice cream after opening a container of what I thought was safe stuff only to find tiny flecks of strawberry pieces (impossible to remove by hand). The strawberry ice cream of my day was like Strawberry Quick. I’m pretty sure they just waved a strawberry close to the vat before adding red dye number nine and artificial strawberry flavouring cooked up by some food scientist.

So why do I go to such great lengths when it comes to ice cream? “Surprise” foods make Julian gag, sometimes throw up and can disrupt an entire evening and if he was forced to try to eat it (and good luck with that) it could trigger a meltdown or what we call a “Julian fast”.

In short, because I love him.

And because I love him…

I have spent countless hours shopping for clothing he can tolerate and wear. I feel up the pant legs of every pair of jogging pants I find, checking the seams before I eventually fold the cuff up and rub it against the inside of my wrist or sometimes against my cheek to see if it’s soft enough. I have spent countless hours feeling the insides of shirts the same way…checking the seams, making sure I can cut out the tag safely, feeling where a decal might be to see if it can be felt through the front, etc. Julian can’t wear jeans or canvas pants; any shirt with stitching or embroidery on the front…the list goes on and on. He used to be able to wear fleece and cotton, if it was soft enough. However… recently his tactile issues have gone into overdrive and he is limited to pajamas only. Yes. Pajamas. And while pajamas are a LOT easier to find and buy, they still have specific criteria that must be followed for Julian.

I go to these great lengths when shopping for my son because it is so worth it. The difference it makes in his behaviour is astronomical. If I had known that he had such a severe sensory processing disorder from the beginning, I could have avoided a lot of heartache not just for him and I but for our whole family and extended family, too.

This is also why I had lunch with Barney the Dinosaur today. You might have thought I meant that I had to watch a Barney movie or that a Barney toy was brought to the table. Those things would all make very good sense. But instead, Julian spent his whole day, including lunch, in a Barney costume I picked up from Value Village for about three dollars. Julian loves Barney but that’s not why he wears the costume (he rarely puts the mask/hat part on)…he wears it because it’s the softest thing he owns.

Because I love him…

I still change diapers more than three and a half years since the birth of my youngest child. Okay, that’s not really because I love him, it’s more because I have to. Julian is nowhere near potty trained, nowhere near ready to be potty trained and quite frankly, might never be. He has no sensation in that area and has never been able to tell when his bowels are full which led to an extremely stretched bowel which in turn led to an extreme case of constipation for most of his life. The doctors FINALLY figured out what was happening and since then Julian has taken a daily laxative to liquefy the feces in his bowels so that it can pass. This means that even if Julian did have feeling, his bowels are so stretched that he would only feel their fullness when it was way too full. It can take years to correct, if it does at all. I will be changing diapers for a long time, yet.

But it’s okay.

Because I love him.

For this reason, I know where every fire extinguisher in my town is. Should the town or one of it’s buildings spontaneously combust, we are your people. Julian has been obsessed… and I mean OBSESSED…with fire extinguishers for at least a year, probably longer. He loves looking at them, talking to them, touching them with one finger while saying, “poke, poke, poke” and even singing about them. He finds pictures of them in books and newspaper fliers and asks that I cut them out so that he can add them to the collection on his bedroom wall. Whenever we got out, wherever we go out, we always look for fire extinguishers. When we find one, he has to stop and stare at it, admire it, talk about it, etc. before he can move on. He has favourites although I can’t tell you what makes them special. He remembers where everyone is when we enter a familiar place. He even has his own which I insisted must be kept in the kitchen for obvious reasons. This kid LOVES fire extinguishers.

Now, if Julian finds a fire extinguisher in disrepair or on the floor of a store, for instance, it will bother him tremendously. Ditto when he sees one that has a roll of tape hanging on the handle or a sweater draped over it from a warm employee. And if he can’t see the fire extinguisher in a restaurant or store, holy Hell will break out.

I don’t for the life of me understand the appeal.

But I do it because I love him and he loves fire extinguishers.

And because I love him, I have learned to be loved in a different way. I tell Julian I love him by not making him hug or kiss me and by not hugging or kissing him unless he says it’s okay. I ask if I can touch him whenever possible and when I have to touch him and he doesn’t have a choice, I warn him first. I ask others to do the same (and you’d be amazed by how many people who love him who refuse!). The cuddles are far and few between with my boy which maybe makes me appreciate the rare snuggles I do get. I won’t lie…it’s not always easy because we associate touch with expressing love and even I forget myself from time to time but because I love him so, I accept his limited physical interaction with myself and others.

My best friend, Tina, also has a son with autism. We were comparing tales one evening and she summed it up perfectly when she said, “They look at you as if to say, ‘Why are you so fucking needy?! I just hugged you last week!’”

And that says it all, doesn’t it? These are some of the things I do for love… there are lots he does for me for the same reason.