J-Bear and Me

learning to navigate the world, j-bear style

Month: July 2014

Nightshift Morningstars

This past weekend we got to return to Boston Children’s Museum for their Morningstar Access program, only this was for the evening edition!

We’ve attended several mornings of the program since that windswept November day that initiated us in its wonders but we’d not had a chance to enjoy the evening version. The evening version, usually on a weekend, is a rare treat offered by the museum to reach out to families for whom mornings might be near impossible. I cannot state how wonderful I find this program and how much I wish more cultural institutions could implement similar access programs for children and adults that require additional supports.

The museum was quiet when we arrived, refreshed after a full day of visitors had ended an hour previous to our arrival. This allowed the museum to be peaceful, inside and out. The usual things that we braced ourselves to struggle with at the end of morning visits were not in evidence: there were no crowds, there were no lines, and there would be none of these things for our entire visit. We would not have to worry about any tears, and that kind of blew me away.

J, who is very confident around the museum now, marched in like he owned the place. He knew we buy our tickets, we place our things in a locker (even any stuffed buddies who join us) and then we go play. It was one of the first times I have been able to truly appreciate the beauty of what Morningstar Access offers to the children and families attending.

J and a lot of children with various disabilities do not just struggle with public spaces due to the fact that they’re overwhelmed beyond that which they may be able to handle. There’s the physical access part, and the fact that the general public is not always very kind or understanding to situations they have not considered. It leaves children and families like ours to be left feeling alienated and cast aside, unable to enjoy what everyone else does easily. This doesn’t happen during these beautiful 2 hours a month at the Boston Children’s Museum. I do not feel it overstating to express wonder and gratitude for this. I watched not just my son but several other children as well be able to access the space freely and by whatever means they needed. A child in a wheelchair was free to bust loose of her chair and move herself about however she felt comfortable to fully explore a construction exhibit, her energy and joy radiating for those around her to enjoy. My own son didn’t get shooed away from the water tables in his favorite exhibit or away from the train tables in the little kids area because everyone there just got what he was up to and saw no reason for issue with him lingering doing the same thing again and again. He was laughing and having fun, why break what works?

These moments of real, true freedom to be who they are within a supportive environment are things that need to become more common. We love the Boston Children’s Museum deeply for this program, even when we can’t attend, and hope that it carries on for years to come. I hope other museums and landmarks can learn from a program like this, and what it means to us.

The Fish

There is something about the water that just calls to J. It is not an uncommon thing in children with autism. It’s one of the most dangerous factors for them, in fact*. He has tried to jump off cruise berths, he has bolted for pools and ponds… If there is water, he wants to be in it whether or not that means he’s being safe or not.

It’s a natural fit that when J’s occupational therapist mentioned aquatic occupational therapy sessions last summer that I was ready to sign him up before she even fully explained what it entailed. It was a natural way to get him into the water in a safe manner and engage him in a new way, something which he sorely needs sometimes. The water feeds his sensory needs in a way little else can. It offers resistance, pressure and relaxation all at once. It’s something his body finds almost nowhere else, yet the challenge that buoyancy provides forces him to face his brain’s confusion about where his body is in space a little more than we can make him do so on land. He’s adapted to this on land. He has not done so in the water.

When you let J into the pool last summer and gave him a moment to himself, he would let himself sink like a rock. He would not flail, he had no real instinctive kick to his legs, he genuinely had no clue what he should be doing. His therapist taught him quickly how to find the side of a pool and once there, how to climb out. It’s a lesson that’s stuck with him but it’s a matter of how he can get from away from the wall to the wall where there was a disconnect.

All it took to close the disconnect was one little boy.

Enter A. A will be one of our classmates come October at 4 Paws. He is a little boy with a devilish glint in his eyes and a smile that you will gladly surrender your heart for. He is adventurous, curious, engaging and funny. He also eats like a trucker and blew me away with his love of vegetables. Anyway, he was at a pool party with us (and two more families with children receiving dogs this year, all amazing) and J became his shadow. If A was doing it, J was soon behind. Following him around became such a draw that once he had a pool noodle to hold on to**, he was off and after him! Without holding on to me! He moved as slow as a snail through sludge but he was going, bicycling his legs to get where he wanted to be.

I was amazed then, but I was even more amazed seeing him do the same thing in his first session back to aqua occupational therapy today. The legs started going determinedly, even if he wasn’t properly kicking or paddling he was working to propel himself. He remembered how he solved the challenge before and kept trying.

I say it a lot: These kids, they find their way. They find their way to communicate, they find their way to get around, they find their way to their goals. We may not always know or understand their methods, but it’s truly amazing to sit back and watch the process. You observe, perhaps expecting things to go in a certain direction, and you get thoroughly educated in just how powerful a determined young mind can be. How can we not have faith in our kids, no matter what their challenges may be, when every day there’s evidence to their strengths?

—————-

*= Cannot say I have much love for the National Autism Association (they believe vaccines cause autism which is a HUGE red flag of “what the heck are you even on?!”) but these particular facts are important and not colored by their misguided thoughts elsewhere.

**= he was not just reliant upon the noodle, though he could have managed. He wears a life vest in the water for his safety. He’s getting stronger, but we always err on the side of safety.

Just a Picture (and some words)

tommytable

 

A boy in his element. We have had the joy of playing with tables like these at the Boston Children’s Museum and at Day Out with Thomas but now, one lives in our house thanks to Gma and Gpa. He is one spoiled boy but gosh, it’s so nice to see him just giddy. This’ll be joy for a while to come.

Also, the top flips over so we can set up the tracks and buildings we already own. 🙂

Updatery

So check this out. Gabriel, the service dog I posted about before who helps his veteran Jake, is going home! He’s not out of the woods entirely but he’s well enough to maintain outpatient care at his family’s home in Texas. This is a huge step for this sweet dog!

Get out the tissues and read more of their story here.

Also! Our friends in Missouri, headed by J’s buddy Ximena (and my buddy too!) raised $650 for 4 Paws for Ability!! This is awesome! Thank you to everyone who ran and for honoring my son and this amazing organization that does so much for children and veterans.

J’s health is still one fat question mark. He’s well, but no one can decide if he actually has/had pneumonia or not. There’s definitely evidence of inflammed bronchia and his energy is off alongside his behavior but there’s nothing that definitively screams “infection”. Meanwhile, the heat is kicking his wee bottom. He napped for 4 hours today, mid day, but was still ready for bedtime at close to a normal hour. I keep him in cool places as much as possible but it’s tough stuff.

That’s all the current news that’s fit to print. Never a dull moment!

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