J-Bear and Me

learning to navigate the world, j-bear style

Month: December 2014

Failcakes

This morning we attempted something I rarely attempt on our own anymore: A trip to IHOP (International House of Pancakes is now just IHOP, apparently).

Now, in the past, J and I would regularly go out to eat together. That was in the days before preschool took over his schedule more than therapy and our days became a lot more completely regimented. We would frequently drive to IKEA for their lovely potatoes and bacon that would cost us a lump sum of $5 for our entire meal together. We would venture to IHOP occasionally, mostly with success. There was one trip to Fridays that was…. okay. Not great, not terrible either, but this is par for the course with J and restaurants in general whether it’s with a few people or just us.

Today, I got crazy? Ambitious? Mentally unglued? I decided since we had gift cards, why not give my beloved IHOP a try. We had Brooklyn with us of course, so it could not be that bad, right?

Wrong. Well, kind of wrong. Sort of maybe halfway wrong.

We got seated pretty much next to the cashier and hostess. This boded poorly from the start. When you couple that with the fact that it was hot as blazes in there, we were not off to an auspicious start. I got Brooklyn under the table, no small feat, and then J was refusing to sit. The cushion on the bench on one side of the booth was torn. I guide him to the other bench and we get settled. Drinks and food are ordered and then of course all hell breaks loose.

It wasn’t as bad as say, Brooklyn eating off someone’s plate or J hanging from the rafters but it wasn’t anywhere near what would be deemed socially acceptable. J kept creeping under the table, startling Brooklyn and sending her skittering out into the path of traffic. She’d need to be coaxed back under the table, so it took a bit to move her out of the way. Then, J insisted on hanging his head off the end of the bench… into the line of traffic. This was followed by the fall into the middle of the floor routine which was only interrupted briefly by three bites of the whipped cream and chocolate chips on his “birthday pancake”, as he dubbed it.

Bless the waitress’ heart, she never flinched. She appeared at all the right times and brought all the right things. The moment she saw the antics of our party, she was lovely and accepting.

I was genuinely ready to gather up the gang, pay and go out to the car for a good cry once everyone was settled. Then this happened:

atihop

J had vanished in the single second I had taken to actually drink some of my beverage and I had not seen him walk away from the table. I looked down and there these two were, peering out at the restaurant around us from under the table. She nuzzled his hands as he patted her and assumed her “best buddy” position beside him while he leaned against her.

So yes, our trip was pretty much a disaster but when you get to see a child that has problems making connections with people throw all this trust on the paws of a friend who simply loves her buddy in return, it’s not all that bad is it. He felt unsafe and uncomfortable. She reassured and centered him, all without anyone outside of them doing anything.

I hope all episodes of failcakes end this way and that these two have a lot more years to come.

Farsighted, Perhaps

We managed to finally get J to a fantastic ophthalmologist last week. When I say fantastic, I feel the word falls short. The New England Eye and Ear Clinic at Floating Hospital for Children in Boston is stupendous. Their technicians get it. I mentioned he would struggle and the tech that assisted us put things immediately at ease by stating you don’t work with children if you aren’t ready to be patient.

Can we clone her attitude and transplant it to those in need? It was that amazing.

Anyway, between her and the wonderful doctor herself, it was determined that J is definitely farsighted and that might account for the strange crossing of his eyes we see. That’s him straining to focus on that which is close. We all do it to some degree when things are very close to our faces, he just happens to do it to things slightly further afield. It’s been clear since his earliest days that his distance vision was good. This child can spot a favored item what feels like miles away. We’ll be on a highway and he’s noticing school buses on side roads nearby, something we’d miss without his pointing it out. We are now noticing more at home how this likely has been the case all along as we see a few of his behaviors in a whole new light, like how he walks away from a new item to study it before coming close and taking it up.

The hard part of this is whether or not he will need to wear glasses. The likelihood is high that he will need to wear them at some point but since his eyes were dilated at his appointment he was having none of being cooperative with the doctor as she did her measurements. She got some measurements, but not enough that she felt confident in prescribing lenses. He will return in a few months for a follow-up, along with ourselves armed for potential repeat of the dilation issue, and we will see what she says.

It is a relief that there is nothing severe going on with his eyes. It is so hard to tell what is serious and what is not when it comes to health issues and J. He can’t tell me if he’s having headaches from eye strain, and people blow off certain behaviors as just part of his autism and sensory processing disorders. I feel that wrong and unfair. Just because he’s autistic and has SPD doesn’t mean that there’s nothing else possible. It just means sometimes it’s harder to tease out as  you’re lacking his ability to describe symptoms to you. We have to go with what we, who are outside his body, see. I am grateful for at least one doctor on his team who takes concerns seriously and doesn’t immediately lump everything up to behavior and autism.

If and when he does get glasses, be prepared for a lot of yelling from himself at the indignity of having to wear the silly things. We’ll see how that turns out.

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As an aside, Brooklyn was with us at the appointment. She laid on the floor through most of it, appearing to do little… It’s worth observing however that we rarely have gotten J into this hospital without a fight at some point. We have now, with her help, gotten him in and out 3 separate times with only mild incidents caused by outside forces rather than a true resistance/fear on J’s part. Amazing!

What You Don’t See

There are a lot of things about the relationship between J and Brooklyn that are hard to explain. It’s even harder when you’re in public and put on the spot with the question of “Well what does she do?”

It is easy to answer this question sometimes. Quite simply, if you’re seeing Brooklyn engaged in any of her tasks besides tethering, we’re in a bad place. Her tasks are largely for use when things are not good. They are stopgaps to help either bring J back to center when he starts to unravel or they are emergency rescue tasks because the worst has happened and he has run off, out of our sight.

You do not want to physically see her working.

The presence of this 68 lbs golden retriever seems superfluous to the untrained eye. I understand that. She seems like perhaps an extravagance. It’s okay for you to think that when you do not know. I do not expect the world to know. I cannot expect the world to know. That’s impossible. Not everyone realizes that before her, the grocery store was a challenge requiring intense advanced planning that would either leave us only able to fill half our grocery list or someone having to stay home while the shopping was done alone. Hospital or doctor visits started with screaming that could begin as early as the moment we parked and lasted well into the waiting room and beyond. School days would sometimes begin with out-and-out battles trying to just get into the building.

The world outside our tiny circle couldn’t know this. They weren’t there. They see now the beginning of the new chapter, where things go wrong but don’t stay there nearly half so long. The chapter where the going south actually happens less. The chapter where my son walks into a crowded, loud, overwhelming waiting room and rather than completely fall to pieces he merely puts his arm around his best friend, who lays still so that he can feel the comfort of her warm fur and unending patience.

But what the world does not see, we do. We see it every day.

I now have two “children” in my care, both challenging and both amazing. J grows leaps and bounds every day and Brooklyn gives him the confidence to continue doing so. There are still things that right now are just not within our reach but we have great hope they will come closer and closer as time progresses, things like plane travel or theatres or stadiums.

We will get there and all with the help of this fluffy golden girl to bolster the courage we already know he bears.

Anything But Autism

(Note to readers: This title seems ominous. I am praying you trust me enough to hear out where I am going with it, and why I chose that title. — Nicole)

I can remember being about halfway through my pregnancy with J and realizing that pretty soon I would be holding a dear little person reliant upon me for life. I wondered what kind of person they would be, as most mothers and fathers do. Would he have my humor? Would he be calm and patient or loud and quick to anger? Would he be sprinkled with freckles like myself and my brothers as children or would he be clear, fair-skinned? Would he have our pale blonde hair, at least that which we three had as small kids, or would he be dark from the start? Would he love art or science?

Then the darker questions crept in. Would he inherit some of the serious mental illnesses that have plagued our family? Would his physical health be strong or would he be frail? What would his future hold?

Now, J is only almost four and a half now. It isn’t like I was pregnant in the days of old where autism wasn’t something people talked about ever, yet I remember thinking “if he deals with anything, please let it not be autism”. I was terrified of autism. I did not understand it. I thought it meant my child would be removed from me, unable to interact and unable to do much of anything. I saw the horrifying picture the media painted and knew little else, so autism scared me. It scared me more than physical, debilitating ailments. It scared me as much as cancer scares me.

Pathetic, right? Ignorance seems what I should claim when I confess this crime but that is no excuse. I didn’t know, but I should have asked.

I didn’t ask.

18 months after his birth, we knew something was going on but not what. 20 months, we had professionals confirm something was going on with little insight as to precisely what that “something” could be. By 26 months, he was given a preliminary diagnosis… Autism, that boogeyman I had so feared, was a part of our lives forever.

I feel so silly now; so naive and so stupid that I let autism scare me. What in the world is scary about autism?! It’s different. It means approaching the world in a new light. It means learning a new language because if I do not, I cannot share the world with my son. It means a whole bunch of things that may seem hard to others but are just what comes with loving this boy to me.

There is a heavy burden of guilt that comes with thinking that once upon a time, I thought autism was the scariest thing that could happen. I do not blame myself for my autism any more than I “blame” myself for his grey eyes or brown hair, it’s part of his hard wiring and that’s that… I do blame myself for having thought that in any way it would have made him less when in fact it’s made him so much more.

Thank you, J. You’ve opened up windows into a world I never would have otherwise seen. You’ve taught me to embrace different and to realize that those that are different are those who stand to teach us the most. You’ve taught me joy in the smallest success and that none of us have to follow black and white neatly typed out timetables to be brilliant, self realized people. You’ve taught me the value of best friends, two-footed and four-footed, and you’ve taught me most of all that there is strength in us even when I feel there is not.

I am sorry I thought once upon a time that “anything but autism” was an acceptable way to think about my child. You deserved better and now, you are teaching me better.

 

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