J-Bear and Me

learning to navigate the world, j-bear style

Month: April 2015

What He Needs to Be Fair

Here I go again, off on a tear about who knows what, right? But hear me out, I beg you.

We have had a run recently of negativity within our home community. It is kind of stunning, honestly. This negativity was never felt during the period where Brooklyn was actually ill and struggling with a few things in public, it’s come during a time where Brooklyn has been on point when working. She has been docile, attentive, friendly and keyed into her tasks. She’s been a joy to work with and a wonder to have in our lives, especially as we watch her and J continue to grow their bond.

But then it starts. The stares. The derisive behaviors. The active detractors who figure that this is something bonus; something extra that J gets just like all his special education services and he’s cheating other people by doing it. They show up with their unruly pets, their bad attitudes and their harsh judgements of our situation. The weather has warmed now, at long last, and with it we have returned to our routine of having some playground time after school. This is very important to J, and Brooklyn is right there with us. She sits watching him and his classmates play, minding where they all go and bothering exactly no one but the people who are pointedly determined to be bothered by her presence.

This is my attempt to educate. I know there are some people who are just so hard-hearted and misguided that this will never get through but I want to always know that I have tried, and tried my best.

equality versus fairness

Credit belongs to someone the internet has long obscured. This image is fantastic.

The difference between “equal” versus “fairness” or “justice” is the key to all of this. When you are looking at the services my son receives and the fact he requires (yes, requires!) a service dog in public spaces as him receiving extra, bonus things you are truly seeing them wrong. I would love for my son to be in a regular classroom with regular worries and a pet dog at home that only friends who come over to play might meet. This is the typical life. This is the life most people just about to have a child anticipate. This is not J, though. He came into this world with his own agenda and his own way of operating that happens to be autism. He needs extra support to be able to do what most people take for granted. This is not a bonus to him, this is helping him function and helping him to access the world around him in a way that is meaningful, comfortable and as close to equal to his neurotypical peers as possible. These things are not some fun toy for us, they are how we make life not just bearable but great for him.

I listened to a mother outright object to all the services special education students receive because they “take away” from her child’s education. I was appalled. I was hurt. This mother has never sat through an IEP meeting, never sat through hours in doctors offices listening to deficiency after deficiency rather than strength after strength; never filled out disability paperwork with the state government so that services might be covered, never fought for fairness and justice for their child on a daily basis. I do not wish that she did have to go through any of that yet I also wish she would stop and realize the cruelty of her words and thoughts on the matter. Would she also begrudge a child with a wheelchair or crutches the extra time it may take them to proceed from one place to another? What about a child with epilepsy the time out of the day it may take when a seizure suddenly strikes and people must attend to them? These are not paths families choose, they are paths we find ourselves on.

This post may never reach the notice of those who need it most. The people who judge us for Brooklyn in our local community will still exist and I am working to reach out to them on a local basis, to educate them as to why she’s present and what she means. I write this because if I can feel the sting of their looks, their choices and their actions my son very likely does too. I am his mother, I want him protected from that harshness as much as humanly possible. Isn’t that what all loving parents want for their kids? Now to get the adults involved in this to see and understand this too. We want fairness for all our kids, not equality. Let them all have what they need to succeed and grow without judgement and without hatred. It’s not a lot to ask, really.

————–

Just the standard reminder we are still fundraising to celebrate J’s birthday by sponsoring a class of service dog teams graduating from 4 Paws! You can read about our effort here!

Superboy

Before I dive in to this post, just a note for those who missed it on Facebook – We are fundraising to celebrate J’s birthday by sponsoring a class at 4 Paws for Ability! You can read about it here.

This week, J’s hair was showing signs of growing out to a very unsightly mass. My son has sensational hair. It’s luxuriously thick, a beautiful shade of dark brown and soft as can be. The downside of this is that he hates brushing it, so when it grows out to any length because he hates haircuts even more, we have some disasters. His hair got long enough this time that it was in his eyes. I am sure that the Beatles would be impressed with his mop top but neither he nor I were entirely so.

easter

J, Easter Bunny and Brookie B. Thank you Xaverian!

I pitched the idea of a haircut every day. Every day. It was pitched always with low pressure. When something is already a source of major fear and anxiety it is absolutely wrong to add even more stress to it. There is no way that anyone in the situation will learn how to cope if we do that, right? So I pitched the idea gently, made a silly game of discussing it, and let him say “no”. The more he could not see out from under his bangs, the more I asked.

Then, in a moment of potential fail, I bribed. Now, we do not have to bribe in this house usually. True bribing, the offering of an experience or a prize in exchange for doing something desperately disliked, is exceedingly rare. This was a desperate time, it called for desperate measures… like offering a choice of Thomas and Friends trains or track. I asked him if he would like to get a haircut, then get a Thomas train after he finished his occupational and speech therapies on Wednesday…

…And he said yes.

I had to ask him 2 more times to make sure I heard correctly! We gathered the troops and pretty much ran headlong towards a local salon. We weren’t taking any chance of minds being changed.

J has always fought entering salons. He misses nothing. He knows where he is going. Brooklyn and he approached the salon with us and he started to hesitate but entered. It was busy, noisy and crowded. He stayed with us. No screaming, no resisting yet. He waited his turn, an absolute feat for him. A wonderful young woman named Danielle called us back when it was time.

He started to fall apart. I had to remove his coat. This strange but friendly lady was talking to him. He was scared because he’d never been this particular place before and his last memories were not good when it came to haircuts. hairscut

Then the stars, somehow, aligned.

Danielle exhibited a kind, gentle patience. We got his coat off. He sat on my lap. I wore the cape, he did not. He faced me, not the mirror, and he struggled… but when she started the clippers he ceased his screaming in fear and said “that tickles!”. He struggled mightily with all that a haircut entails, but he was not paralyzed with outright terror. He even laughed a couple of times. He allowed two passes of the cool blow drier to remove fallen hair from his head and shoulders, something he’s never done.

He did amazing. 

Now, he is roughly 10lbs lighter and 100 times happier without so much hair on his head. Brooklyn loved on him when he was done and they left side by side, just as they came in. She hated waiting for him while hearing him in distress but did her job exactly as she should.

We chose trains at the store not 15 minutes later, brought them  home, added them to our collection and enjoyed a fun night of playing with them. Now to hope that this experience keeps him aware next time that it won’t be quite so bad. It may not be easy, but it’s not terrible.

———————-

Oddly, the same day, we had another new experience.

J talked to a stranger. Spontaneously.

I generally have to prompt him when we are talking with new people. He rarely engages until he’s settled with the new people, which is fine. I wrote this up on my personal Facebook so I hope you’ll forgive my copying and pasting:

When we were leaving his OT/Speech clinic a gentleman (well dressed, handsome, clearly from a more luxurious tax bracket than we plebs) was behind us at a little distance. He caught up as we reached the end of the path to the parking lot, greeted us with a nod as he passed us and went on his way.

Or so he thought.

Jacob called after him. My son, who rarely to -never- talks to strangers without prompting, called spontaneously after the stranger. “HEY!”

The gentleman, being absolutely worthy of that term, turned back. “Yes?”

“Where you going?!” Jacob asked, like a surly little police officer.

“To my car,” the man answered, amused.

“Why?!” asks Officer Jacob.

I stepped in at this point, trying not to cry with laughter more than embarrassment because the man handled it so beautifully and I could not believe it had just happened. He smiled at Jacob and Brookie, waved to us and went about his life. This kid will never cease to surprise me.

My son sounded straight out of Southie, a silly Boston stereotype with his strong questioning. This man, who we have never met and may never meet again, could not have been any more friendly about it. That day, I swear… the universe was all together there for J to succeed however he wished to, so he did. He does everything in his own time, and his own way. I have zero doubts that my son is able to do anything he sets his mind to. He will show us his amazing mind and amazing skills in his own way and time, just as he does now, and I am loving being a privileged spectator on this adventure.

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