What I want you to know

Posted by Tracy

June 6, 2017 Uncategorized  2 comments

I don’t know if it’s the second day in a row of gray skies and sputtering rain, but I’m feeling rather down on myself today. I promised myself that I would post, so I apologize in advance if this is a downer.

The morning was going fine, and the Boo and I were almost out the door when he doubled over. Clearly, the boy needed some time on the toilet. So I made him go back into the house, where he took care of business and washed up (still wearing his rain coat, by the way), then ran out screaming and crying that we’re going to be late.

We weren’t going to be late. I should explain, though, that one of the Boo’s quirks is that when it’s 8:27 on a school morning, the car had better be backing out of the driveway. Unfortunately, his little pit stop delayed us, so when turned on the car, the clock read 8:28. Screaming, yelling, crying. “We’re going to be late, and everyone is going to yell at me! Drive super super fast!” Not a fun ride, but I was just more worried that it would carry over into the rest of his school day.

Fortunately, he had calmed down a little by the time we arrived. I walked him to the door, and the only evidence of the trauma was red-rimmed eyes. I haven’t heard anything from his teacher, so hopefully he just gets caught up in the routine and feels better.

Of course, there’s still an effect on me. But that’s not something a lot of people who aren’t special needs parents think about – that fact that we also need a chance to breathe and recover after getting a kid through a full-on meltdown.

I haven’t posted a lot about the Boo and the things that make him different, mostly because we haven’t exactly pinned them down. He was identified for developmental delays when he started preschool, and he has an IEP. Part of it is a speech delay and part of it is social pragmatics (ways people interact with others and their environment; apparently those skills come naturally to most). Academically, he’s either advanced or average in various areas. He was actually way ahead of the curve in spelling, but we think that has to do with its concrete nature; there’s no inference involved, and the answers are either correct or not.

As parents, we learn to accommodate our kids in certain ways. When Kiki was very young, we learned that going into certain buildings would bring on a screaming meltdown. So naturally the easiest thing to do was avoid bringing her to those buildings if we could. No big deal, right? At least none of those buildings were places she *had* to go, like preschool or grocery stores. And she grew out of it.

The Boo is the same way, only his issues are a little more widespread. He decided for some reason that he didn’t like Home Depot for awhile. He won’t go into the ice skating arena, despite the fact that he took lessons there for a year, and has attended Kiki’s lessons and shows since he was a baby. He doesn’t like certain rooms in one of our aunt’s houses. We no longer force him to attend our niece’s recitals or most other live performances that require the audience to be quiet. A lot of these things are associated with noise. He goes through phases when he wants to wear his sound-reducing earphones. He’s in an off phase now, thank goodness, but I keep a set around just in case.

I know there are people who believe that we shouldn’t arrange our lives around these things, that we should force him into these uncomfortable situations and that he’ll eventually learn to deal with them. They believe that we’re coddling him, that we’re making his condition worse and doing a horrible job preparing him for “real life.”

(Incidentally, some of these are the same people who believe that homeschooling my daughter – and accommodating her learning style and interests – is coddling her and will keep her from learning about how real life works. That’s a topic for another time.)

In some ways that seems like a logical conclusion to draw. If only it were that simple. I don’t even think I fully understand it; I often feel like I’m running on instinct here.

The best example I have is our morning school routine: While there’s a drop-off spot near the door of his school entrance, the Boo insists that I park and walk him to the door. He holds my hand every morning. I’m probably the only mom of a first-grader who does this, as most kids just get out of the car and run to the door. So maybe people stare, and maybe people think I’m spoiling him by doing this. Believe me, I’ve tried to ease him out of it by letting go of his hand a little farther and farther from the door. I’ve talked about how I could drop him off like the other parents in cars do (and I’m trying to plant idea for second grade; his reply was, “You can walk me to the door in college, too”). No dice. He clutches my hand until we get to that entryway, then he lets go and skips along into the building. From there, he has a great day of school.

Here’s how it see it: If that little bit of “coddling” means that the rest of his day goes smoothly for him and his teachers, if it means he is happy to spend that time learning with other adults and other kids, I’m happy to do it. And I will do it as long as he wants.

Here are two posts I’ve read recently that give some insight into what we’re trying to figure out, even if our situations don’t seem so drastic to me yet.

An Open Letter to Anyone Who Has Experienced My Son’s Meltdowns

An Open Letter From an Autistic Child

The first one made me nod in sympathy, because others have to deal with some of the same crap I do. The second one made me cry, because these are the things I want our friends and family to understand, especially the ones who don’t see our kids often enough to get why we have to do what we do. Honestly, I think it helped open my eyes to the situations of others, too (yes, I can be a judgey prat, too; I’m trying to fix that).

These letters are about kids on the autism spectrum, and we don’t have a diagnosis of anything yet; it’s a long process. Maybe I’m sharing this stuff prematurely, but so much if it feel like it fits and maybe it will help others relate a little better to other families going through the same things.

2 comments to What I want you to know

  • Aunt Liz says:

    Tracy and Jason. I think both of you are doing a terrific job 😘😘I think you both understand you children very well. Children that are on the spectrum need that extra special Love and understanding from all. People still do not understand the turmoil it creates in the caregiver. Not because of the children BUT from the people that treat your child like they are bad ….. the children aren’t bad, They are being themselves and your babies are very well loved 🤗😘. I love you all Tracy and Jason and Jane and Geoffrey….Keep doing what you are doing and you and your children will be better of for it. ❤️😍❤️❤️🤗🤗🤗🤗

  • Dorlien Kittredge says:

    Tracy your story is beautiful and courageous. I don’t see coddling here. I see parents, who wasn’t the best for their children. What parents don’t want that? Your children are so fortunate. Unfortunately some people do not understand and are uneducated however please know that for each one of these people there are people like myself that support you 100% you and Jason are amazing parents love you much

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