J-Bear and Me

learning to navigate the world, j-bear style

Month: January 2014

The New Fundraiser

The time has come that I finally write a post about this.

In October of this year, J will meet his service dog. This requires a two-week stay for us in Ohio for the training required. That means hotel, gas, food, and so on… It adds up, and it adds up fast. The current forecasted need we have for this is $3,500.

Now step back and consider that number. It seems an easy number for a family to reach, right? Yet, it’s not. It’s actually almost as scary as the $13,000 goal we raised for 4 Paws for Ability last year. This time though, we’re fundraising for ourselves.

If you’re interested in helping, you can read more about this latest endeavour here: http://www.jbearandme.com/operation-j-to-dog/. The link to our Razoo page is both on the sidebar and on that page. There are special rewards for different levels of donations! We’ve already gotten two! If you don’t want to donate, please consider sharing that page around. Every drop in the bucket helps.

The Unbearable What-Ifs

So, to those catching up with the story of our intrepid hero J, he has had staring spells since he was just the smallest of guys. This isn’t just “oh he’s off daydreaming”, this is he’s asleep with his eyes open and completely checked out. The light is gone from his gaze when it happens, it’s really disconcerting. They never last longer than maybe 30 seconds but still… They’re a thing. They don’t happen daily but when they do, they startle the dickens out of me.

His developmental pediatrician suggested we follow-up on these by getting a 24 hour EEG. This means hooking little man up to many leads and being in patient. So that’s what we started out with at noon on Monday. It is now almost 8pm on Tuesday and we are finally home. We got a sort of episode on the study and it showed nothing overtly abnormal, so they cut us loose. The full study will be read over the coming weeks because, hello, that’s a lot of data.

Anyway, as you sit in a hospital room watching a machine take measurements of things you have nothing but the most vague comprehension of, your brain goes strange places. What if he did have a seizure disorder? What would this mean to our lives? What’s does this mean for his future? What if, what if, what if…

But no matter what, it all came back to the same thing: I was still going home with my sweet boy. Overall, my son has rude good health on his side. If he has a seizure disorder of any shape, I’d still have my son. I’d still have my little gregarious bear and we’d face whatever was handed us head on.

I saw a poem entitled “I’d Still Choose You” that was written about parents of special needs kids and their children and gosh… Maybe it makes me a hateful person but I barely skimmed the poem before getting so angry I closed the screen. There is no magnanimous decision involved in being a parent to the child you were given. This is a relationship you enter into blindly. There’s no kicking the tires, there’s no checking the teeth, there’s no Kid-fax before you receive your son or daughter, even via adoption no matter how many things you go through – You’re either which way entering into a relationship with another human being, and we’re a bunch of constantly changing, constantly evolving creatures. I signed on to love the child I carried whatever that may call for. I entered into that whole heartedly, and continue to be whole heartedly in that mindset to this day.

I signed up for Jacob. I did not know what that entirely meant at the time, but I signed up as enthusiastically as a child goes after sweets. I get no major awards for this, I get no special head pats from God or the universe… I get him.

There’s nothing in this world better than that. Anyone who has seen his humor, his sweetness and just the light he exudes as he wanders through this world can plainly see… That’s a pretty awesome gift. I’m pretty lucky, really. Even when it’s hard.

If you steal pictures like this you aren't nice

We make long days look fun, right?

The Flail Whale

I find myself mentally flailing a lot lately. Some of it is directly related to sleep deprivation. J has been waking most nights and staying up for an hour or three each time and we are both exhausted by it. This means we are in a cycle where meltdowns happen a lot too.

Oh, do they happen.

My heart breaks so badly when it comes to these. I know he’s struggling. I know he’s not being a bad child. He’s beyond what he can handle and he has no other means by which to tell me so the carefully constructed block tower of calm crumbles down. It takes a long time to rebuild that tower sometimes. Days, even. But, we do, and it’s just part of life. People unfamiliar with the circumstances might judge us harshly but as hard as it is to remember this in the moment, I know that’s more on them than us.

Yet, inside, I flail.

By the blessing and curse of the way I was raised, problem solving is huge for me. I always feel like I have to makes sure all that is somehow perceived as not right gets fixed. This is a heck of a boon when it comes to working in the customer service industry but a nightmare in day-to-day life sometimes. It’s hard sometimes, when my brain gets stuck in the rotten gears it once learned, to realize that rather than trying to obsess on fixing sometimes I have to ride things out and let the solutions shake out that way. This is where I am with J right now.

I can mitigate stressors whenever possible. I can plan in the ways only I know how to try to reach success but sometimes, ever last bit of that will blow up in my face. It happens to everyone, it’s just often louder when it happens to us. I have to learn that it’s okay when it does and I don’t need to fix, fix, fix. Learn the lessons, trudge onward and all that.

Meanwhile yesterday I took J to gymnastics class. You out there from his team that have seen him through since he was two and a half, re-read that. J went to gymnastics class and it was a huge successGo do a victory dance around your office. You deserve it! I was ready and flailing internally before we even got in: New place, new sounds, a gym environment (echoes are the enemy), new people… But I had a little boy who is so very physical in all he does, he needs something more than what he has right now. So, despite some early horrors, we did it. He did it. And he did amazing.

I said to the instructor how even just six months ago, everything we did never would have happened. It’s true. The idea of going on a large trampoline was terrifying. A balance beam at a height for adults (with teacher support!)… Not happening. A huge pit of foam cubes into which he must jump from slightly varying heights? Madness. Bouncy castles and slides? He might go in one but he’ll just sit and look around at best if he even went in at all!

And he listened. Oh, how he listened! I sat across the trampoline while he sat with his instructor and the two other children in class. When she said stop, he hesitated, but he got off the trampoline and sat down. He struggled as little boys often do but he always came back to exactly what he should have been doing. He followed a long series of tasks, with assistance, and did all but one several times!

He’s melting down a lot. He’s not sleeping through the night. He’s struggling with eating from time to time and yet, he’s also making these mind-blowing strides. I said to his teacher yesterday that it’s like the shining diamond I know is in there under all this extraneous stone is finally starting to glimmer out, tiny bit by tiny bit, and it’s all thanks to a lot of people believing and seeing what it is I see in my boy.

This turned a lot more sappy than initially planned. Sorry folks!

Now to work on flailing less and letting him be the teacher a little bit more. He doesn’t know it but he’s the best teacher I’ve got.

——————

A point of clarification for those who may be interested: The gymnastics class J attends is adaptive gymnastics, made for children with special needs. The class is small, the instructor we had (a substitute) was fantastically attentive as was the assistant. If you’re in the north of Boston area and are interested in more information drop me a note at mamabear@jbearandme.com and I’ll send you their information! 

The Service Dog Question

I have been talking a lot about the decision to get a service dog for J or any child or adult lately in various mediums so I figured I would bring it here and chat it out somewhere I could have everything neatly laid out. Okay after writing the post that likely should be messily but I tried at least! 

Children with complex special needs kind of force their parents, like it or not, to reach far outside traditional boxes. We’re parents, after all. We want the best for our children, but the path we’re on isn’t going to be typical. Quickly, to meet your child’s needs and help them to succeed, you have to start reaching outside the expected. You have to twist your world view to include things you never considered before. You become adept at planning, able to sort out anything from a grocery trip to a hospital stay with the precision of a well seasoned general: You deploy your troops, you select your arms, and you make the situation you are in work. Does it always work? Oh heck no. Failure becomes your teacher on a daily basis, from big things to small, and there are many days where you come out of the battle going “Did no one turn blue? Is everyone at least clean and somewhat fed? Good, let’s call it done and do it again tomorrow but better.”

It’s life.

In thinking outside the traditional I found 4 Paws for Ability. What they offer suits my son’s needs and my family’s needs. There are many organizations that offer service dogs and they run the gamut in terms of how reputable they are. This is the organization that caught my attention. They focus they place on individuals, their families and their specific needs meant the world. They train specific to the needs of each child or adult and make every effort to give you the dog you need, even if this is not the dog you envision. Trust me, I envision these sweet shaggy faced golden doodles every time I look at the puppies but when the staff at 4 Paws sit down to find J the right dog for him, it could be any of their larger breed dogs. If for some reason the match does not work out, they are right there supporting you to make things right. Every step of the way the support is incredible.

We have not even gotten our dog yet and I can say the latter. The moment you enter the program and begin your fundraising you join this group of families representing a wide swath of the special needs community and they quickly become your family. You lean on each other, you bolster each other, you laugh and cry with one another… It’s the hidden treasure you never thought you’d get in starting such a journey to be sure.

Do I think the choice to get a service dog is a light one or an easy one? Absolutely not. It should be considered with great care. You are, after all, committing to a new family member who has their own needs as well. Can you handle the cost of the dog? Are you able to commit to their care too, from walking to play to working the commands to keep the dog’s skills fresh? Are you willing to handle the potential confrontations from people who do not understand the laws pertaining to where service dogs are and are not allowed (4 Paws does educate you in this and is there to assist you in situations of an animal being denied access to a place they are by law allowed)?  Are you willing to accept that this dog is at heart a dog and will do dog things, like chew on something they should not or carry all your socks around in their mouths because it’s fun?

When I sat down and weighed this out, the benefits to my son by far outweighed the drawbacks. He needs the companionship, the security and the safety this dog will be able to give him. This could be the key to unlocking some of these emerging skills that seem to get stuck. The dog could also help with his increasingly severe separation anxiety… Every day the “YES” list grows and every day I get more excited for October.

If you’re considering a service dog for someone in your life I strongly encourage you to do your research, ask questions and trust your gut instinct. I am always happy to answer questions about our journey thus far and will continue to do so as we get our dog and meet our future. If you would like to learn more about 4 Paws for Ability, please check out their website at http://www.4pawsforability.org.

Conversations

I keep going to start a post with the phrase “So I was having a conversation with my son…” when I stopped and realized that, hello, that phrase deserves a post in and of itself.

One year ago, words here and there accompanied by sign was where we were at. This wasn’t a terrible place, but it was a challenging place. His world was so closed off that letting people who did not doggedly spend hours with him get more than a fleeting glimpse the wonder that is J was difficult to impossible.

Then, six months ago, we had words. Words were coming with regularity. There weren’t a lot, but some days he was repeating and trying them out and other he was using this small handful of words purposefully. The progress was great. He was working hard, trying to do his best with what he was given.

Now? The path my son has travelled in this past year is tremendous. I cannot even try to measure the distance because that is just how far it has been. The world laid down the mightiest of challenges to J and rather than inch along slowly – a pace that is perfectly acceptable, mind you – he blew along like a charging bull! We have spontaneous words now, sometimes coming in two and even three word combinations. We have some great listening and simple direction following emerging. He is playing games with easy instructions, he is singing songs with that can be clearly deciphered by people who don’t see him every day, he even makes attempts to communicate with strangers.

I know at least a couple of the wonderful people who helped him to get to this point read this and wow. J is showing off the fruits of your labor and his own so beautifully. I have conversations with my son is something that I thought was in our distant future, not in our today and now. Between you all – his Early Intervention team, his beloved Building Blocks ladies, his Kioko therapists and his team at school – you’re all making him just blossom and I know I shouldn’t be but I am so in awe and so in love with the beautiful little boy who is getting more beautiful by the day.

So I had a conversation with my son, and it was glorious.

Baby

Everyone, meet Baby:

baby

One night, when J was boycotting sleep for the 750th night in a row, we were laying in bed looking at pictures from the ol’ internet. This guy came up, thanks to a post on Reddit*. He about jumped out of his skin with glee! “Baby, baby, baby” he repeated over and over again, awwing and oohing over the cute little baby seal.

This is what my days consist of. This image is now the lock screen image on his iPad. When he’s not himself, if he sees this picture, he turns into smiles and coos of “baby, baby”…

… And I have to remind myself that this is our real life, as odd as it is.

The Kid I Don’t Have

I cannot mourn for the child I do not have.

Strange statement, right?

I do not have the preschooler  you see on television, all sassy and chatty. I do not have the child who listens to directions or warnings easily. I do not have the child who does things in a mainstream, socially expected way.

There is a place in the heart of parents like myself that I know mourns the child they do not have; the child that some of them envisioned and the child they see in their child’s peers on a day in and day out basis. You have these gut wrenching moments of “If only…” or “I wish…” and it can steer you down this slippery slope of self blame, sorrow and heartache. It’s an ugly, dark and dismal place to be.

I can’t live there.

The son I have is amazing. Yes, other children my son’s age, their parents celebrated their child saying phrases long ago. That doesn’t matter. I celebrated it yesterday and it was glorious. Did you know he plays games now? That he can sing “Head, Shoulders, Knees and Toes”? Did you know he can create little scenes with his toys and just crack you up with the way his mind works, because now he can let you see that? Do you know that he loves to give kisses now, rushing over sometimes out of the clear sunny blue to press a smacking kiss on my cheek?

There is so much yet to be done ahead of us, so many things to learn and to cope with and to work either with or around. Every day though, I look at the son I have and cannot help but to think “wow, I got a good one”… Even when he melts down so badly it takes days to fully recover. Even when the house is destroyed beyond recognition with toys and stuff all over. Even when all he can do is flail his arms at me, scratching and hitting out of sheer frustration in his attempts to tell me something. He is my son, my best boy and changing even the smallest thing would take away what makes him ever so uniquely him.

So I can’t and won’t mourn for the child I do not have. I will celebrate the rough and tumble shining star of a little boy I do. Every day, I’ll hope that the rest of the world can come to appreciate him too, learning to love him just exactly as he is. No more and no less.

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