J-Bear and Me

learning to navigate the world, j-bear style

Tag: autism (page 2 of 14)

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.

—————————-

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.

 

Free? Not So Fast…

There are many who balk at the amount of money it takes to breed/acquire, raise, train and back up a service dog through their working life. It makes sense, given that we do not generally see dogs as expensive to obtain and that their training is not a tangible object like a car or a computer.

It took us six months of fundraising to meet the $13,000 we’d committed to fundraise in J’s name for 4 Paws for Ability. That’s a little under half the full cost of what it took for them to give Brooklyn all she needed and then for them to back her up during her service life. When I say “back her up”, I mean that anything that happens that we struggle with we can call the trainers and get assistance. If there is an emergency with her, they will assist us where they can. If she needs refresher training or something happens that means J needs a new skill from her, she can go back to their facility, learn the skill then rejoin our family. Brooklyn is expected to have a career that lasts around eight to ten years, ten being a longshot. Realizing that what we fundraises goes into 4 Paws for Ability being by our side in her working life for that long suddenly puts the amount raised into sharp perspective.

There are organizations that can, and will, prey upon the desperation of parents. The moment you hear your child is disabled, you become painfully familiar with the word “no” or worse, being told “yes” but price, distance or other factors making the resource you’d been approved for next to impossible to obtain. When you are willing to do anything for your child and are acting out of haste rather than carefully planning your next step and choice, you’re susceptible to snake oil salesmen. They prey on our community hard selling anything from supplements that range from useless to harmful to even offering “free” service dogs that turn out to be ill-matched, ill trained and potentially even a hazard for the household in which they are placed.

Please, if you feel the service dog road is one you’d like to explore for your child, I urge you to do your homework. Contact several organizations. Learn their credentials and see if you can talk to families who have worked with them. You can check out Canines for Disabled Kids (http://www.caninesforkids.org) for information as well. They work to support teams of service dogs with children, be they in a 3 party team like Brooklyn and J or be the child old enough to handle the dog on their own. They can offer some perspective on various agencies, though they may not know every agency as some of the more shifty ones pop up as fast as dandelions in summer. Check out the organizations non-profit status and explore their ratings online. There’s information out there that will help you make the best choice for your child.

It’s tempted to go the easiest road, but that road in this case might be the worst thing for your child in family. I know it’s hard to face the idea of fundraising so much money, then to wait a year to a year and a half until the dog is actually in your home. That process can be painful at times, yet the moment  your child and dog meet there will be little sweeter in your life. The process also enables you to get a taste of what the work load will be like once you bring your child’s service dog home. It is not easy, or free, but it is worth every single moment put into it.

kisses

This meeting was 18 months, thousands of dollars, countless hours of work and worry in the making. It is worth all of it and so much more.

The Moment

I should be writing about training but for now this strikes me as more important. I can write about today and tomorrow together in one post, right?

Brooklyn came back to the hotel with us tonight. J did attend the morning of training today but not the afternoon, so he was surprised in a major way when I came through the door with Miss Brooklyn herself by my side! Now, as fascinated as he is with her, he’s til now been reserved. He’s enjoyed her, but always in a very controlled manner. The only environment he had access to her in was chaotic and confusing to him, so it was too overwhelming for him to truly know her.

Then she stepped into his world.

I was nervous. Not going to lie, I was very nervous. I was uncertain how she would take to the hotel room and more importantly, how they would take to each other now that they were in a more natural environment for him and a completely new environment for her.

I was an idiot. I am so, so happy to report that.

He was timid at first with approaching her, giggling nervously and jumping away. He repeated again and again “J doggie, good doggie” or “Brooklyn J” in his singular manner of speaking, growing less nervous and more overjoyed the more time passed. I got her settled and shown around then gave them a ball stuffed with some good treats for them to play with and all walls and reservations between them crumbled. They could have played that game all night! He rolled it, she dutifully trotted after it, snatched it up, snuck a treat out and brought it right back! Those of you who follow us on the J-Bear and Me Facebook page have already seen a little video of this… It went on and on.

That was not the moment that it became clear just what this all meant to J. This was (forgive the terrible quality of the photo):

babies

 

You see, while Brooklyn rested on her mutt mat J disappeared into the bedroom. Moments later, out came J with three babies in his arms.He set them down carefully and gently introduced Brooklyn to one of them. He did this all quietly and seriously, holding it while she sniffed. She had tried to pick one up earlier while J wasn’t around and was corrected so this was not even an issue when he did this. She was tender with him and he was simply in love.

I only got hints of the beauty of this decision before. The moment he sat on her mat showing her his best friends, that was the moment. They found their language and he found in her not just a dog but a friend, showing her incredible trust by allowing her to “share” the stuffed animals with him.

My son has a new best friend. What could be any better than that?

She is Love

That is all I can even say about this gorgeous girl. She is love. Sweet, eager to please and loving beyond what you could even imagine possible. She is soft, she is gentle, she is perfect for her boy.

She is just love. Please enjoy the photos courtesy of Stephen Herron, a dear friend who has been in my life so long, he’s beyond family to me now.

waited

sojacob

sharingfood

meeting

kisses

greatfriends

gorgeousgirl

The Many Questions

There are so many questions that come up in a journey like the one we’re on. They are asked by a wide variety of people ranging from those who know us and J very well to those who have only fleetingly encountered our story online. Most questions are fair, and should you have one you’d like answered, feel free to ask. You can always inbox me on our Facebook page if you do not feel comfortable posting it publicly.

Here’s some of the biggest questions. I did do a brief Q&A when we were fundraising for 4 Paws that covers some of this so if you’ve read that, this might be redundant in places!

Does J really even need a service dog? What can a dog even help him with?

This question always comes across to me as more confused and uncertain than it does potentially accusatory. When you realize what a very, very small percentage of the disabled community uses service animals and how rarely most people encounter them in day-to-day life, the question becomes all the more fair. When we do not see something or engage with it, it’s really hard to understand it.

J’s dog represents three things to him: comfort, security and independence. Brooklyn will be able to mitigate anxiety driven behaviors via commands from her handler that will draw J’s attention to her, giving him a focus and place of peace when he is overwhelmed. She has at least 3 actions she can be asked to take, and as we get into training and work with each I will detail them further. He has a very, very hard time accessing things that most take for granted: A grocery store or mall can be completely heartbreaking torture for him right now. I can plan trips to these places with the precision of military special ops and still end up in a situation where he cannot cope. This is not anyone’s fault, it’s just life in our world. Brooklyn will mitigate that.

His dog is trained to also maintain safety for him. She will be able to tether with him when we’re out as a team under a handler’s care, ensuring he cannot bolt off somewhere dangerous. She will also be able to track him should he vanish. There are those who scoff, claiming these dogs cannot possibly do that for these children… I cannot see why they scoff unless they have not themselves witnessed a dog track a child. I’ve had the chance to witness it on video several times now and every time I am amazed. They do not falter, these dogs. They find their child and in an emergency situation, this skill is mission critical. Remember, my son is attracted to water and trains and has zero sense of danger. We need every advantage we can to bring him back should he ever run off. He’s tried a few times and thankfully we’ve caught him but he’s only going to get bigger and faster, as kids do.

Is he really autistic?

There is no “look” for autism. No one “looks” autistic. The disorder is characterized by a series of behavioral and cognitive traits, not by appearance. When J so chooses, he makes splendid eye contact and will utterly melt your heart with a soul felt smile. Most days, however, he’s much more content to do as he does, engaging the world in his slightly either side of typical manner. That is his autism. He is a sensory seeking, object studying, train loving, hugs and squeezes needing little boy who struggles with communication but works hard at it every day. He is in a classroom of several other children with varying needs. You cannot tell on sight what any of those needs are… You just see several amazing kids who happen to be fighting big battles to make their way in the world.

If you take anything away from learning J’s story, I pray that it is the understanding that autism is deeply individual. People on the spectrum may share traits. They may share habits. They may share interests and disinterests just like the entire world does… but there is no one single autism. It is a spectrum for a reason and each individual diagnosed with autism is like a different star in a dynamic sky.

How come service dogs are so expensive? Why didn’t you find an organization that gives them “for free”?

The quotes on that question are important. There is little in this world that is actually free. There are organizations that do place service dogs for various disabilities with little cost to the recipient except time. The waiting lists are long. It’s the trade-off for the low-cost to the recipient. Some of these waiting lists can be 5+ years and many organizations will not work with such young children.

We did not lay out $13,000 of our own money for this dog. That is now how 4 Paws for Ability works. When you’re accepted into the program you become a fundraiser for them, sharing their message with the world. You raise not just the money to place your dog but awareness for their cause. We are their biggest advertising campaign. The money we raised is just about half of what it can cost to breed, raise, train, place and support a service dog through their life. Our dog will be supported through her whole working life by trainers and staff who are on call whenever we might have a question. If there is an emergency, they’re there for us. If our dog needs refresher training, they’ll help. They connect us with other families who are going through similar things and give us a home within the organization along with placing this well-trained dog with our child.

Sometimes, $13,000 seems far too little.

Can  you ever write anything short?

Nope. That’s why I blog.

PS: Super excited I spelled “recipient” right without spellcheck.

It’s A…

GIRL!

Everyone, I am so pleased to introduce J’s best friend, the newest member of our family:

This is Brooklyn. She is part of the Cities Litter born on 11-21-2013 and named by the Falzarano family in honor of their beautiful son Hawke. Hawke passed away before he could meet his service dog because of a seizure disorder. This is the second litter they have named, as each of their sons have a city middle name themselves. If you would like to learn more about Hawke and his family, please go here.

This is our beautiful new girl!

brooklyn boy

She is an English Cream Golden Retriever. Look at her swooshy tail! J will be -over the moon- for her, and given her heritage she ought to have just the right amount of mischief to fit into our family seamlessly.

I thought at first that Brooklyn was a boy. It was hilarious to find out after I emailed family that I had to email them again and correct her gender, but I am sure she will forgive me my faux pas.

That beautiful face right there? Everyone who has cheered us on and helped us along the way has made this possible. That smile is as much for you all as it is for my beloved boy and in 11 days, we’ll get to see them both together for the first time! I cannot wait, and we have plenty of tennis balls awaiting her!

Everyday Miracles

kingdonut

J doing what J does best: consume donuts.

 

Where do I even start this post. I am going back and forth between shaking and crying and for one of the rare few times in my life, it is not over something horrible happening.

That’s what I am used to, you know? Bad news, all that good stuff. I am a pro at disasters. You give me something amazing and I walk around it warily like it’s a velociraptor preparing to strike.

But goodness comes. Miracles happen, and they come out of the clear sunny blue.

Not too long ago the organization Ride to Give  helped one of J’s classmate’s family fundraise to get them from their home to Ohio for training with their service dog. We applied, but we continued fundraising on our own. And everyone – We did a great job. Every one of you who shared, who donated, who participated in the giveaway, and who just supported us made it pretty good. We raised part of what we needed – enough for one major cost, but we still had a shortfall.

Then I get a message: We can help. We had, that same day, sat looking at numbers and realizing the enormity of what lay before us. Medical bills, car repairs, household expenses… Life adds up, and it’s been adding up fast this year. J’s dog is so, so important to him; to his future and his comfort that any sacrifice was on the table to make this happen for him.

This tremendous organization showed up and has reached out to help remove our greatest burdens of fear and stress. Ride to Give has taken up J’s cause and is helping us raise additional funds for our travel and our dog’s care.

There are not enough words. There are not.

To those who found us through Ride to Give, thank you. You are giving a family peace. You are helping my son meet a service dog who will see him through hard days to come. Medical tests will no longer need to require horror. Visits to new places will not need to be faced like a battle in a long war but instead the adventure they actually are. He will have comfort. He will have security. He will have an even brighter future, and now, you’re all a part of it. Welcome to our little online family. I look forward to sharing J meeting his dog with all of you.

Thank you. The words are small, but they’re from my heart and I cannot say them enough. Thank you.

J’s campaign can be found here: https://fundrazr.com/campaigns/bsve8/ab/b3pd72

Preschool 2014-2015

Today was J’s first day of his second year of preschool. We had a visit to his classroom yesterday as he is with his same friends and same staff, but in a different building this year and initially he resisted. Full scale yelling “no”, threatening to melt down but he calmed upon approach of the building. I think realizing it was not the awful summer program he was returning to helped.

Fur seal pups playing in an enclosure while a little boy looks on

Watching the fur seal babies play.

We celebrated yesterday with a trip to the New England Aquarium as mentioned before. It was a fail overall, which still bugs me. I did reach out to them and hope to be able to talk to senior staff there soon about potential things to be done to make the aquarium more accessible to people with special needs like J’s.

Anyway back to the story at hand. Ximena, J’s runner through the I Run 4 group, sent him a fantastic Superman t-shirt and I realized when we opened it that this had to be J’s first day of school shirt. We got dressed, washed up, even brushed teeth this morning and marched off to school without a single struggle this morning. He celebrated the new year with munchkins for breakfast, of course. He had no issue going into his classroom, setting his things in his cubby and getting to work. This is such a departure from last year at this time!

This year he will do two days a week, one hour each time, in the general preschool classroom. I am nervous about this but also excited. I think he has grown so many skills in the past year and it will be interesting to see how he responds when this becomes a part of his routine. Last year, a visit to that classroom would immediately shut him down and send him seeking a place to burrow away. I do not think he would do the same now but as ever, he always surprises me. The dog will also help to boost his confidence, which will help in ways I bet we cannot even yet measure.

Here is Mr. Preschool 2014-2015:

little boy in a backpack

Before school. Pardon the weird haze at the top, my phone case is a jerk.

superafterschool_marked

Little boy after school with his buds! He made that hat. It has apple cut outs that the kids glued on them. Adorable!

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