J-Bear and Me

learning to navigate the world, j-bear style

Page 4 of 31

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.

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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.

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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.

Time for Acceptance

The journey from the moment J was diagnosed with autism to today has been filled with curves, hills and detours. We have only been aware of his autism for two and a half years. We have so many years left of exploring, learning and growing yet to do. The approach of April heralds a lot of people talking about autism. This is good. The world should know about autism and learn to understand what it means, right?

Sadly, it does not always read that way.

There’s puzzle pieces everywhere, a symbol that reads like people like my son are something to be solved; to be fixed. There is this commercial push towards blue because one organization deemed that to be the color for autism. There’s a lot of voices trying to talk over one another and yet, the most important voices of all are often looked over. The voices of autistic adults and teenagers are of essential value to the generations that will come after and yet, here we have this month that seems to forget their very existence.

My son is not a puzzle. He is a work of art created in a different style. He has every piece he is supposed to have, perfectly fitted in the order they were meant to fit to make him uniquely him. I said in his IEP meeting last week when we discussed some of his language development that when he was born, he threw out the map. He did. He has charted his own course from the first and that course shows such beauty and promise. It will not be typical. It will not be easy. It will not be what anyone expects and yet, it will be exquisite and amazing to behold.

This April, I ask you to consider the voices of those who know autism best. I ask you to listen to what they have to say, see the contributions they are making to their world and most of all, to give them the respect they deserve. You can find some great autistic voices at the links below:

The Autism Self Advocacy Network

Chloe Rothschild

Conquer for Conner 

Videos by Amythest Schaber

Nathan Selove

If anyone has additional links they want to share, please let me know, I’m always up for more reading and know there are lots more out there.

15 Years

Our mornings began as dawn was barely breaking over the beach near her house. I always had to creep in for worry of waking the house though looking back, I wonder why. She was always awake when I arrived. Sleep was a fickle friend to her, often eluding her at night but taking her by surprise during the day. Her body was weary but her mind, that never tired.

“Good morning, pumpkin,” she would say, speaking just loud enough to be heard. The words were so soft but always rich with warmth and love.

“Good morning, Nana,” I would answer, quietly too so as not to wake my very tired uncle. He held down the overnights and I held down the weekdays, you see. This was how she was able to remain comfortable in her own home.

nananna

Nana Anna and Papa David on their wedding day.

This was how every day began for two months. They were two long, difficult, scary, funny and incredible months. They were two months I wish I could have back to live again and again, no matter how scary they got.

You see, Nana had cancer. It was in her liver. She was diagnosed in early 1999 and rather than aggressively attack the cancer, she considered her life and the quality thereof. She elected to simply live. She was 77 when she was diagnosed and her doctor estimated she would have about a year from that point. He was almost spot on with that estimation. She travelled, going to Ireland a last time to spend time with family there. She spent time with her family here. She simply enjoyed her time and when the cancer began to take pieces of her freedom away, a lot of her family came together to make it possible for her to live at home in comfort until the inevitable came.

And of course, it did.

I was not there when she passed. I could have been, I imagine, but that did not seem her wish. She shielded me a lot. The worst of her symptoms would come at night. My poor uncle saw the worst, her own son, yet during the day somehow it never appeared. She would not tell me the worst of what she felt. The worst I would see would be how awful the medication she needed to function made her feel, for she would cringe. We instead passed our days peacefully, sharing laughter and simply enjoying each other’s company between visits from nurses, health aides, friends and family. She did not pass away until after I left very late on the 19th, having I imagine finally found her peace. She knew the love of her life, who she waited over fifty years to see again, was waiting for her when she got to the other side.

There she rests now. I cannot visit her grave easily but it is a comfort to know she’s there with him, my grandfather, and at peace.

goofy

This is 100% a Nana Anna “I am up to no good just watch me” face.

It was 10 years after her passing that I could see her again. Her great-grandson was born with her smile. It was clear from his first day. As he has grown, J has developed her keen sense of mischief and her intensely hilarious inability to be subtle about it. He, like his great-nana, broadcasts everything he’s about to do. He has a face like glass and so did she. He has the gorgeous shape of her eyes and their beauty, but not their color. Oh no. The color is all his own, a bit of her aquamarine-ish green and my mother’s family’s blue shaken down into a startlingly pretty grey shade.

I tell him about his great nana. I tell him about her a lot. He would have loved her, as he loves his Grammie down in Virginia. Their gentle and patient natures are the perfect match for his needs. I wish he could have met Nana but that’s now how things were meant to be. Instead, she and Papa will watch over him as I hope they watch over me. I’d love to say that in the course of so many years the missing fades or hurts less but that’d be a lie. Death does not heal. It transforms those it leaves behind. You aren’t who you were before it happened… Grief is a journey that changes you. You learn to live with this part of you missing, never to return. The only way to get that part back would be to never have known the one you loved and lost it for. That’s not a price many are willing to pay, I would hope.

I love and miss you, Nana Anna. I still see you everywhere and for that, I am glad. Keep an eye on J for me and even though I know you were never too fond of animals, I know you too would have loved Brooklyn. Send a sunbeam to warm us when you can.

Dear Medical Staff

This is for you, the techs, the nurses and the support staff in medical offices and hospitals. I need you to understand something.

Compassion is what will save both sides a lot of stress.

Hear me out, please?

Yesterday, I spent the day in an emergency room. Again. This seems to be an almost yearly event and thankfully despite a very long day yesterday I actually have an answer as to why I keep having such similar problems year after year. This is good. Great, even. The visit sadly highlighted something else that needs even greater attention than what brought me to the ER.

I have bad veins. It’s a well noted fact, I have always and forever been a tough stick. There have been a few blessed phlebotomists who have quickly and relatively painlessly drawn blood or placed IVs on me but more often than not I leave situations like this appearing like I can barely retain water due to so many holes. It’s a mess. Fifteen years ago a particularly uncaring tech decided to dig around in my wrists for veins despite my protests. She rendered me unable to use my hands for several days, the pain was so great. I could not brush my hair. I could not do simple things for myself. It was upsetting that I was disregarded and rendered what felt like injured for so long and has stuck with me ever since.

Now, enter yesterday. A tall man my age or maybe a little younger approaches me. He’s with the IV team. He’s there to place an IV for fluids and blood draws. I submit to his efforts, already in pain hence my being in the ER to begin with. I ask what I always ask: Please avoid my hands if possible. I need to be able to function after all. He outright ignores me with a huff. Three sticks later, he goes for my wrist. I screamed. He cleaned up his stuff and huffed out of there declaring me impossible to stick.

I sat there and sobbed. A kind woman who works in the lobby brought me tissues.

This is for that fella, who later came back when I consented to do one last try for an IV and mocked me openly because I screamed:

You don’t know what PTSD is like. Your disregard for my simple request kicked off terror. You cannot help that you’re male and sadly, I cannot help the reaction of terror I had so acutely at your actions. If you had talked to me, treated me like a human being you would have known this. The ultrasound tech did just this and had me at ease and chatting amiably all through my test despite the fact I am usually wildly uncomfortable with strangers touching me.

You never took the single solitary moment to realize that most people aren’t drama queens, they react as they react for reasons. If it had been my son in your care, he would have done all I did and more because you’re a stranger touching him and not only are you touching him, you’re doing something he doesn’t entirely understand and it hurts! It’s a rare child that doesn’t freak out over needles, after all, and he is no different… there is just little to bring him back from that horror besides his dog right now. I cannot imagine the ugly things you’d have said about that, probably blowing off the fact he’d hear every word and understand you.

Just like I did.

Talk to your patients. Set them at ease. Show them care and understanding. It changes everything. There are nurses in that very hospital who I let one night spend the entire evening trying to get an IV in me for a test. I was covered in medical tape and holes, but they succeeded and even though it hurt and I was miserable, I could smile and laugh about it. Why? Because they all approached it with understanding, respect and when they realized humor helps me, humor. When you’re a good sport it really helps the person you’re working with be the same.

The funny little epilogue to this rant is that not ten minutes after this person left me declaring me impossible a young lady came along, got a blood draw done on me rapid fire and I never ended up needing an IV. Still got a diagnosis, still got taken care of, still survived to tell the tale.

Odds and Ends

So, mama apparently forgets to write. Here’s some miscellany since when last I sat down and updated here.

The end of January started what I believe is the snowiest 30 days in Boston’s history. Seriously we were/are buried. It just kept coming, storm after storm dropping a foot or more and our town was more than negligent in cleaning up after each hit. J gets uncomfortable when just a smidge of snow gets visibly on his shoes, forget having to hoof through snow that was up to his forehead or higher. He did not play in it, he’s still only now coming around to touching or stomping on some of it. It was hard on all of us, especially he and Brooklyn. Hopefully now the weather will slowly improve into a beautiful spring and this boy and his dog can get outside and enjoy the world as they love to do.

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Language has been the biggest change in J in the past months. He is saying a lot of purposeful phrases and incorporating new scripts into his day-to-day life. There’s a lot more “I don’t know!” rather than “NO!” in answer to questions and more importantly, his listening and being able to follow directions is continuing to blossom. He says some great sentences now, none of which I can think of off the top of my head of course, and is very warm and engaging to familiar people. His biggest communicative challenge continues to be extending those skills to people outside his familiar circle but that’s what Brooklyn is there for. She brings the people, he can learn to share his charm with her supporting him.

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Speaking of Brooklyn, we had out first and hopefully only major fail season. This weather combined with dietary and timing factors led to some embarrassing situations in two different stores. The uptick of this situation is that I believe I am now an expert pit crew. The downside to these situation is that people are not understanding or kind. The staff at 4 Paws for Ability is fantastic though, one of the head trainers talked me through a few strategies and along with fabulous advice from a dog food expert we seem to have Brookie B handling things a lot better. As the weather warms I am looking forward to more excursions to work on her skills in public. She is fully trained already, mind you, it is our job now to keep her fresh and ready for whatever J may need of her.

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J’s birthday is in June and he will be a big 5 years old. Our boy, he is so blessed in terms of clothes and toys. He has everything a little boy could ask for plus a dog. This year, our goal is to make his birthday about giving back. Sure, we will do our usual fun traditions on his birthday but we also would like to fundraise in his name to sponsor a training class at 4 Paws for Ability. Sponsoring a class means you fund their refreshments during training, their training materials and their graduation goodies. Our class was sponsored by one of the area universities and they spoiled us rotten.

Watch this space for further details. Maybe we’ll even be able to sponsor more than one class, time will tell!

Done Her Job

Last night was a doozy. J has these episodes where he wakes up and if he can’t be immediately soothed back to sleep, the world somehow ends. The crying and falling apart is heartbreaking to see and extremely difficult to settle.

Brookie doesn’t like to hear her boy upset. She gets agitated so once she came into the bedroom with us, she hopped on the bed. J’s initial reaction is to push her away. Brooklyn is a sensitive girl but not when it comes to this – she knew her job. She pushed close and laid her head across him (the “lap” command, which she’s been shown to do at these times before). She kept him firmly snuggled between herself and me until he was dozing once more. She looked up, a sort of “yep, did my job” expression, and hopped off to go lay in her bed in the living room once more.

This morning, some of the same unsettled behavior returned as we headed into school. Again, Brooklyn did her job. He was upset walking down the hallway so she nudged him with her nose to get his attention. He was fine by the time he entered his classroom and we’re hoping for a great day.

It’s hard to explain to people what Brooklyn’s jobs actually boil down to when it comes to behavior disruption. The behaviors she’s responding to, like the crying and the agitation, are things that we have shown her are things she should be responding to. It is a very hard process, showing Brooklyn this, because your instinct is to focus on soothing your child rather than teach a lesson to anyone else about it. You want to comfort them yet sometimes your repertoire does not include the needed antidote for what ails them. This is Brooklyn’s cue to step in and step up. It is a process that began the day they met and slowly grows a tiny bit every day until we have moments like we’ve had this week where she successfully brings him back to a good place faster than we could have without her. She offers a sense of uncomplicated peace and reassurance that not even a parent can quite muster. Parents grow impatient. Parents get anxiety. Parents feel their child’s hurt and pain. Brooklyn sees past it. She sees a situation she’s been taught before and knows that when her boy is calm again, so many good things happen. She knows that no matter what, he will be calm again even when the people standing around think he’s lost for a long time. Patiently, peculiarly and perfectly she loves J back to his best self and marches on with her day once she has.

She is such a good girl, this Brooklyn. She is confident enough to withstand the initial rebuffs her boy might give, sensitive enough to know when he needs her despite the rebuffing and silly enough to always be able to do something unexpected to make him giggle once more. This is one hell of a learning process but I have to say I am loving every minute of it. Every day, these two do something that amazes me. There’s little better in this world than that.

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.

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