J-Bear and Me

learning to navigate the world, j-bear style

Tag: spd

Sadness

Before I get into this post, a giveaway/fundraising update: We’ve reached $1900! That’s just about enough to cover our hotel! Our goal is $3500 and we’d love to get as close as possible so our drive to and from training plus food costs might be defrayed. Thank you for those who have donated and look for the drawing for the great iPad Mini giveaway on 9/26!

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We are blessed with many days that J’s limitations do not phase us much. We have worked out routines that make our necessary tasks flow smoothly more often than not and even  have some flexibility with him. It’s been a lot of work to get there, both on his part and on ours due to our learning curve (remember, we’re not native speakers of his language!) … But then there are days and events where it all fails.

Today we attempted the New England Aquarium. Now, I love the Aquarium. I even worked there for a while, though I worked in the Simons IMAX Theatre rather than the aquarium proper. We made this journey last year and had success, so why not try it again, right?

Wrong.

Now, J loves animals. Aquatic animals, land animals, avian animals… He’s an animal guy! We talked about aquatic animals the whole way in and of course talked Octonauts, his under sea Disney Jr friends. He was excited to go inside until he actually got inside.

You see, the aquarium’s interior, where most of the exhibits are, is very dark. It facilitates better seeing into the various tanks and exhibits but when you’re a child with sensory issues, it can be unexpectedly overwhelming. The moment we entered the main exhibit areas I knew this was not going to end well.

The areas lit with natural light or close to natural light he did fine. There was a rays and sharks touch tank he actually did far better with this time than last time.* He enjoyed the large area out back where the sea lions and fur seals live. All the fur seals were out and about so he got to enjoy their antics. There were two very young ones wrestling and jumping around which was delightful to see.

That’s where the good ended. Anything to do with the bulk of the aquarium had him terrified. This wasn’t a child being fussy, this was full out fear and that is what breaks my heart. I know he loves fish and fish tanks. He loves seeing them at the pet store along with seeing the reptiles and other creatures. He would have dearly loved seeing Myrtle the sea turtle but it was not meant to be.

We barely made it 45 minutes and had to leave because he could not cope.

That breaks my heart. This place that could have been such great joy was utterly inaccessible to my son and I have no idea what I could even do about it. There were so many things I could not control tearing at him and forcing him to dive for emergency exits and scream. It’s brutal to watch your child that upset and that scared, especially over something that should be peaceful and even loved.

These are the things I get sad about: the struggles and the times where things that should be accessible aren’t, and I don’t know how to make them so.

In slightly related news: Anyone know an aquarium in the New England area that does accessible times for special needs kids? Let me know.

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*= Last time J attempted to throw himself bodily into the touch tank more than once. That ended our visit, but thankfully it was well after enjoying everything else for a while.

Food Fight

The term takes on an entirely different meaning when you have a child with autism or sensory issues.

J has decided that food is not for him any longer and it is a war to get him to drink more than milk and eat more than chocolate munchkins.

This isn’t like with most children though. Most children will eventually get hungry enough to go on to something else to eat. J however will refuse food and drink that is NOT preferred to the point of causing himself harm. He will dehydrate. He will remain hungry. Milk gives him sustenance but it’s obviously not enough. I say this not only as his mother but as a child who was seriously picky with food – I would refuse a lot of foods but eventually hunger would win out and I would figure out some way or another to eat at least a part of what I was offered. He’ll just cheerfully go without as though unphased as I hear his stomach rumble two rooms away.

I’ve tried vitamins with him before to little success. They caused him digestive troubles and it seemed counterintuitive to give him something for his health that was actually making him feel miserable.

There are some feeding techniques I am aware of and as he returns to school post April vacation I hope to start implementing them as part of a more strict routine. The break has caused other disruptions in progress and behavior, as all major changes in routine do, but this eating business is what has me the most stressed.

I blog about it mostly because whenever I tell the world about a struggle he’s having he gets a bat signal about it and has to show me up shortly thereafter by doing exactly what it was I was saying he wasn’t doing. I am hoping this pattern continues and tomorrow he eats like a ravenous wild animal of everything that I offer to him.

I can dream, right?

Dr. J-Bear and Mr. Hyde

This is my life with my son right now:

Mornings are mornings. No one likes mornings, according to me. He gets up, he goes through eating his cereal and drinking his milk and we time everything by when Justin Time comes on Sprout. No joke. Sprout, don’t ever change your programming. We do wash up, get the backpack and we’re off to school. There might be some minor fussing about the washing up but it’s become a game now so no huge deal.

He is awesome about going to school. He hops out of the car all happy, we point to some things in the sky (bird! cloud! plane!) and we head into his classroom. He greets everyone happily, does his tasks and bids me farewell. Apparently after I leave, he’s the best boy to ever boy, too. Listens, does as he should, is generally just a peach.

Then he comes home.

What happens between school and home, I don’t know. It’s like I end up with a completely different child. He is angry, grumpy, refusing to listen, refusing to do anything besides tantrum and hit his head on anything. By anything, I mean the floor, the furniture, the brick fireplace, the tile kitchen floor… Can you understand my horror here? It’s a miracle he’s not truly caused himself grievous injury here.

Now, this was starting before he ever got sick so my want to chalk it up to that is kind of wrong. His teachers report nothing different, nor do his therapists. Is it just because home is a safe place to lose his mind that he does so? This all culminated in a 3am massive meltdown tantrum this morning. He was bull that I would not let him tear at my face and rip at my hair as a stim. I moved him away from me gently, told him no, and turned away from him which ended his world.

I’m at a loss. This is tough stuff. I talk him through feelings and through pretty much everything we do. I never stop talking. I am obnoxious. Everything we do, I’m half narrating. I make sure to use simple terms, everything. The only thing I am not using is pictures lately, so maybe we need to improve on that?

I am not saying my son is by any means a demon child, I just don’t understand how I went from my mellow guy to this angry little bear who wants to rip my face off as much as he wants to play with me.

Haircuts, He Hates Them

Oh, does he hate them.

He liked exactly one haircut in his whole life. It was his very first, done by a dear friend, and he was the happiest clam to ever clam.

Every haircut since has been utter fail and woe.

Today was only a little different. I didn’t want to drive so far away and risk hitting nasty traffic so I took him up the road to a chain salon. The lady who took him happened to be the lady who cut my hair a couple of weeks ago. She did an amazing job with him! Despite his screaming the entire time, she gave him a very clean, even, nice haircut. I am actually shocked given that even though I had him on my lap he was all over the place.

Here’s his cuteness before grocery shopping afterwards:

haircut day_marked

Of course this sweetness belies the fact that the moment we got home he lost his mind so badly it took a half hour to calm him down. Good with the bad, folks, good with the bad.

Back to school tomorrow with the goal set at having him attending full days by next week. It might be too ambitious but we shall try!

I have great news about some awesome donations that I will post later. My inbox needs going through and I better get at it!

My Preschooler

firstdayofpreschool

Welcome to life with J-bear. He attended his first day of preschool today. I decided that him only staying til 12:30 was likely the best bet for him since he’s never had anything like a full day of school before.

Turns out, he did pretty well!

He struggled with transitions but recovered well it seems. He even went to the gym without melting down from what they said. It’s pretty awesome to hear that knowing how he struggles with places that echo.

The fact that his teacher and the classroom aides have this amazing sense of calm about how they manage the classroom is likely a huge part of why they’re succesful. Despite every child having very different needs the classroom had no air of chaos whatsoever. Everyone seemed well attended to and well cared for. This makes me feel better about the year to come. I can see him truly flourishing in an environment like this.

Next week will be the true test as he starts to get into staying even longer days and such but I think this will slowly start to work out just fine.

At least I hope it will, anyway.

What a Day

The meltdowns, they return.

He hinted at their resurgence this morning when, upon arriving at his new school, he realized that he would not be going out to play on the beautiful play structure they have right beside the preschool classrooms. He was livid at being “forced” to enter the school and visit his classroom to meet his teacher, aides and classmates. One of the aides from the summer classroom happens to be the secretary at his school so seeing her helped.

I would like to thank the brain trust that decided to put a gorgeous, fun, appealing playground structure outside the preschool classrooms at J’s school. The preschoolers are absolutely forbidden to play on it. You must be in kindergarten or older. Let’s ignore that the exact same structure is at every school in our town and he was allowed to play at the one at summer school. I feel pretty awful for the teachers and aides having to explain to all these 3 and 4 year olds that nope, as fun as it looks you must NOT go near it.

Good times.

Anyway back to our story – He came home, had a brief nap and then we were off to therapy. The poor guy, something really does seem to be going on. He was so very spaced out and at one point even bodily moving him did not get his attention to return. I had to wait til he tuned back in to ask him to hop into the car. He continued to be a little spaced out during therapy though he did a good job meeting his new speech therapist.

Then we went to the grocery store.

Big mistake.

He screamed pulling into the parking lot. He screamed getting out of the car. He screamed going into the store. Once we were in the store I stopped with him and our carriage the first place it was safe to do so. I let him stim against the side of the carriage to calm himself but even with timers and transitional warnings, he wasn’t transitioning away from it. He melted down completely. Now, this is not the time to give a stranger unsolicited advice but of course, someone did. I ignored it the sheer stupidity of it, for they had no clue my son wasn’t just being an angry three year old, he was dealing with oh so much more.

I did all I could to stay calm and not cry. I succeeded, mostly. Very close to completely. I got him settled with his iPad once he relented to sitting in the cart and raced like my butt was on fire through shopping.

These are the days that are hard. These are the days I want to tell all the things that make my son struggle to jump off a ledge. I cannot however separate the good from the bad without losing that which is intrinsically J, so I will take the bad with the good and hope people keep their weird advice to themselves more often.

Gentle Giant and Troubling Behaviors

J is a big boy. He just turned 3 this past June and is already 39″ or so tall and 36lbs of boy. He seems like such a little scarecrow to me given how lean he is but when I pick him up I am quickly reminded just how solid that deceptively scrawny body of his is.

He has this natural gentleness to him that has consistently surprised me. There has only been one true instance in his whole life where he swatted at another child intentionally. It happened at Early Intervention group and the moment it happened I separated him from the moment, told him “no” and that we do not hit, and sent him back to play. I was nervous that it might be a sign of emerging aggression yet the aggression never came. The episode never repeated and though he can be as rough and tumble as children his age generally are this behavior has stayed at bay.

The gentleness disappears when it comes to himself. It would be unfaithful to the truth of our story if I did not tell the bad with the good. Within the past few months he has taken to hitting himself in the head or hitting his head off things when he is frustrated with something. The situations that bring out this behavior are nearly always within the home and seem to all be related to him being told “no” when he is already kind of tapped out or tired, but it’s hard to say whether or not he does it outside the home. I am definitely going to ask his team to keep watch for the behavior but overall… I can’t describe how it makes me feel.

I guess in a lot of ways it doesn’t matter how it makes me feel because the focus truly needs to be on finding out the root source of why he does it. I have some empathy for him when he gets frustrated. He doesn’t understand why he might be being told no, or being diverted, or being asked to get ready to transition. He seems like he is overwhelmed with things in that given moment and he has no proper output. Today, after a careful transition out of playing a game on the Yogibo with me he walked into the kitchen, knelt down on the runner and banged his head off the hard tile floor. I was so upset I just couldn’t even act. He realized quite fast that wasn’t a great plan on his part but then proceeded to keep smashing his head and face into the Yogibo til I managed to work him away from being on it and got him focused on dinner.

This is likely very convoluted but this is very difficult. I want to help him cope, to give him tools to help ease whatever is making him feel that actions like these are the only outlets, but how do I do that? I use my words. Words aren’t going to be his outlet, not yet, maybe not ever. I know the people he works with always have great suggestions but man. It breaks a mother’s heart to realize that her sweet, loving, gentle giant of a boy is having a hard time being that way with himself at so young an age. I can only wrap him up in my arms and remind him he’s okay and everything’s alright so many times. I always remind him he needs to be gentle with himself and to “play in a gentle way” (thanks Ni Hao, Kai-lan!) with his body but man do I ever feel useless.

We Love You, @yogibobags

This week I saw an amazing yard sale deal for a Yogibo Max. It’s a massive bean bag chair/cushion that is just, well, amazing for sensory kids like J. The deal was too great to pass up so we drove well south of us to pick it up today.

It was worth every dime and then some.

It’s been in the house for not even a full hour and he’s all over it. He can flop on it, he can be plopped on it, he can lay on it, he can burrow into it, he can pile his stuffies on it, he can drive trucks on it, he can kick his legs against it… He is having so much fun with this thing that I am just kind of in shock. Usually when something new comes into the house it takes him several days or longer to warm to it and have true interest in it if he’s going to have any interest at all. This was barely in the house 10 minutes and he was on it like it’s what he was born to do.

Right now he’s settled for a few minutes and is sitting burrowed deep into the huge cushion. Every so often he kicks.

Yep, we love you Yogibo!

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