learning to navigate the world, j-bear style

Tag: life with jacob

Not Broken

This is something that is hard to write about. I will likely cry through the whole entry but internet, I’m trusting you to hear me out here.

My son has autism. He has sensory processing dysfunction. He is non-verbal. He is delayed in several areas, some significantly.

He is not broken.*

I want people to meet children like my son. They have a lot to teach all of us. Their biggest gift is the lesson that while different, they are no less worthy. They are no less loveable, no less able to learn, no less deserving of human dignities and respect. They are strong, beautiful souls and minds, ready to take on the world in their own way.

Will he do things in the manner most would expect? Likely not. I can’t say definitely one way or the other on that count because, like all children, he surprises me regularly. The quick snapshot most of the world gets of him is just that, a brief moment in time. It does not always reveal the startling depths of his curious, intelligent mind. He is an astonishing problem solver, working out how to meet his self-made goals efficiently and effectively every day.

These are not the signs of someone broken. Of someone sick. Of someone who needs to be somehow altered and remade.

My son needs tools. A lot of tools. He needs more tools than other children his age in some areas. We, as the custodians of the world in which he and his peers live, can give them these things. It’s not hard. It merely requires you to stop and think outside yourself. You will find while you learn to find the tools he needs you learn new things about yourself and the world around you.

People like my son will teach you the true depths compassion and joy can reach. My son’s young mind is so beautifully non-judgemental of the people he meets. They are who they are, and he will take them on their own merits. He finds delight in simple things, making the commonplace truly extraordinary. Some of this is the simple wonder that comes with being a young child with an unfettered mind; a child whose sense of wonder is still gloriously intact. The rest… The rest is J being J and seeing the world through his unique and mysterious lens.

Please don’t try to fix my son. Please don’t try to help me do so. You see, I am blessed. My son is not sick. My son is strong of body and mind. Just be there to offer tools to help him show that mind to everyone he meets and the rewards will be limitless. When you infer that he is broken, you step on a very broken piece of my heart. I have seen parents struggle with children who are ill and could use a miracle. Please don’t speak like we need what they need more. J and I are the lucky ones. Just let us enjoy that.


*= couldn’t completely say that in truth given, well, his broken elbow but hopefully my point is still clear.

The Best Boy

Today’s been a thing. I had surgery 10 days ago and had issues ever since. I went back to the surgeon today for the latest look at what’s going on with the holes in my abdomen and this time, J-bear had to come with me.

Now, we all know he’s no stranger to doctor’s offices. He has his own battalion of medical professionals. He’s never actually been into a doctor’s office with me as the patient though, despite seeing me in the ER and hospital, so I was nervous about how this would turn out.

Sometimes I wonder why I worry. He did perfectly great.

The nurse practitioner, who is a very delightful woman, spoke directly to him and was very sweet with him. While she worked on my incisions, J did get a little nervous. Bandages and the like make him very wary and uncomfortable. He did not like seeing the steri strips and such, so he stayed back. The nurse practitioner kept things very light and made everything so matter of fact that J never went into his avoidant behaviors. At home, J would have steered clear of me after seeing all of that. Today in the office, he just kind of inspected, shrugged it off and carried on with his day.

He went out on errands with me afterwards and apart from a brief little meltdown when he didn’t understand where we were going he did wonderfully. He helped me pick up much needed staples for the apartment and even earned himself one of his favorite snacks. Well, close to. Both Dunkin’ Donuts did not have munchkins (I know!!!) so he had a chocolate donut instead, which is apparently a most acceptable substitution in his majesty’s estimations.

Now, strangers witnessing today might have thought he was a terror at points because he does vocalize loudly. Not angry and screaming sounds, just a lot of loud words in his own language. These things don’t entirely phase me, though I do remind him to be quiet, as I am grateful he vocalizes at all. He even spoke independently to the nurse practitioner, saying bye-bye with a stiff little wave.

Yeah he really was the best boy today.

Mabel’s Labels Are Go!

J-bear starts school on Monday. That means Get All The Things Ready.

Backpack? Check. Lunchbox? Check. Extra set of clothes? Check. Diapers? Check. 

You get the picture.

As I was approaching this situation I realized I was going to be writing on a LOT of stuff with sharpies. Little kids lose stuff. It’s part of being a little kid, or any sized kid. J has to bring cups and/or a thermos with him every day as he only drinks milk so those need to be labeled, his sandwich container needs a label… Heck, even HE is labeled via a tag on his shoe!

Now, I could have gone the sharpie route but the writing is not always easy to read. I could have gone the embroidery route in terms of his backpack and lunchbox, but even though I sprang for LL Bean products I didn’t truly want to put his name that loudly on every single thing. Then I remembered it…

Mabel’s Labels

This is a company made by four moms who know the frustration of their child’s things leaving the house never to return again. They created fun, durable, washable and reasonably priced labelling products to help busy parents like me and busy households get their stuff to come back home again. I heard about these labels when J was a new baby but forgot about them til a couple weeks ago.Image

Now, when the labels arrived today I was not sure what to think. Once I opened the envelope though I knew I had made the right choice in bringing my business to this great company. The labels are beautiful, bright, cheerful and clear. I have more than enough of them, plus in a great variety, to get through the school year and even beyond. I am excited to truly test them out in terms of their dishwasher safeness but so far, I am very sold on these products.

Now, in the spirit of true honesty I must state this outright: I bought these labels. I am a paying customer who is very, very, very happy with my purchase. This may seem a goofy way to seek to simplify my life but if I have to write out one less thing in the course of a day my hands, they are so much happier for it. If Mabel’s Labels can do a fundraiser with us to help fundraise for J’s service dog, would folks be interested?

Whirling Dervish

That is what this week feels like. I am starting to believe that all weeks are going to feel this way: chaotic whirling dervishes that leave me so turned around by the end of them that I am not even sure where’s start and where’s stop. 

But this is life, and J never rests.

Tomorrow is something like this: 

— Speech therapy

— Genetic Screening in Boston

— ABA 

Now, do you think he’ll nap anywhere in any of that? Because it would be my fondest dream that he would but let’s face it: all kids J’s age run on their own agenda, the only difference between my guy in most is that he doesn’t care to often share what that agenda is going to be.

We will get through it though and and hopefully it won’t be so bad.

On the fundraising front we’ve broken $800! Every single step that brings us closer to getting J united with a service dog is progress and all of it excites and elates me. I cannot wait til the day that I am writing to share his progress with his service dog with everyone who will have helped us get there. I can’t wait to spam you all with pictures of it too because, come on. Have you seen this kid? Him AND a dog… The cute, it will overwhelm.

Not that I am biased on his appeal or anything, being his mother and all.

T-shirts are in the works and I am very, very excited about them. The moment we have things ready I will be sure to update and share them with everyone so the word can be spread.

Now, I have to get back to fighting the good fight and figure out how to write letters to people I don’t really talk to begging them for their assistance. I am a party animal.

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