learning to navigate the world, j-bear style

Tag: no one autism

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.


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.

The Mayor

Have you met my son, the mayor?

He must have learned something from my friend and former co-worker Garrett for he’s really starting to become the little man about school, about his therapy center and about anywhere he’s familiar with. He has abruptly become all about people and it is both amazing and shocking – amazing for how happy it makes him and shocking for how stark a change this is from the little boy who entered Early Intervention two years ago.

This is what keeps me going, after all. I may have some pretty strong beliefs about all the wonderful things that are there in my son, but I am well aware that most of them aren’t always seen by the world at large. The biggest job undertaken since he entered Early Intervention and now since he has entered school has been to open that all up…

Well, I am proud to say that the doors are opening. Fast.

I have always called him my sunshine boy. He has always had this tremendous personality and a smile that could lift the heaviest heart, if even for a moment. When you combine that with his empathetic nature it makes for quite the compelling little man. Now, let’s layer some sincerely comedic timing and silly mannerisms and there you have it, my J-bear all neatly summed up. He adores making people smile and laugh. He loves initiating social games with the people he knows. The way he speaks is still quirky and sometimes hard for people who aren’t with him daily to understand but he never gives up on it – he persists til whoever he means to convey something to gets it.

The boy he is becoming blows me away. I want to keep fostering these caring, thoughtful, social, silly, wonderful traits that are emerging while letting him know that the days he isn’t so sweet are okay as long as he doesn’t stay there. I want him to forever know that even the best of people have off days. It is okay to be frustrated, to be mad, to be sad, to be however you feel but to not be unproductive with it. Feel it, work through it and do what you need to be better later – within reason of course.

I want to keep seeing him be the mayor. I want everyone we interact with regularly to continue to look forward to seeing him and what he’s up to. I want to see all of this social behavior just plain explode and flourish when he and his dog team up in October. Just stand back and imagine the power of one charming little boy and his equally charming sidekick/service dog…. Man. I really think they stand a good chance at changing the world, even if it’s just the world immediately outside our door.

I think I am going to like continuing to work for this little mayor.

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