learning to navigate the world, j-bear style

Month: January 2013

Moment by Moment

Thursdays are J-bear’s playgroup. I will never be able to say enough about how awesome the children, parents and staff involved with this group are. We have such an amazingly dynamic group of adults with a bunch of hilarious children. 

Today, for example, all the children went under the parachute together! They laughed and laughed! After seeing some of these children not interact or laugh at all, this was such a thing of beauty.

That’s what life is all about, those sparkling little moments you need to seize and treasure.

A lot of my parents and grandparents generation have stated to me that “we spend so much time teaching them to walk and talk just to tell them to sit down and shut up” when it comes to discussing this generation of little ones. They are so right in some ways. There are days I very much wish J-bear was capable of sitting still without being desperately ill or asleep. I can’t find myself actually wishing him to completely sit down and shut up though.

This is by no means a nomination for sainthood. Shoot, I caught the little guy by the lip today when he came running and I didn’t notice how close he was to the dishwasher door as I lifted it to close it. Human? Filled with flaw? That might as well be tattooed on my forehead.

I waited a year for J to speak. A year to have my son look up at me and say something, with clear and definite meaning. He had babbled in those first months venturing towards the development of communication but what words he’d gain held no meaning and disappeared. It was when we added in more intensive therapies that the key began to turn in the lock which before had been stuck. He spoke to me. He signed to me. It was imperfect and the vocabulary limited but my son spoke to me. His little voice, even when he turns it up to 11 amidst his experimentation to learn how to modulate everything he does, is one of my most favorite sounds.

This past Christmas no one stood a chance in topping the gift he gave me. He had climbed into our Big Red Chair and looked up at me as I went to pick him up. He met my gaze with a presence so rare for him, a clear and lucid directness that one only sees in fleeting glimpses. It lingered for almost a minute as he smiled and said ‘Mama’. It is the first and only time I have ever seen or heard him say it.

I never need to hear it again, though it would be nice to do so. It was perfect. It turned into a moment forever etched on my heart.

The key I have found to coping is going day to day. I know my son oh so well, as most parents do with their own children, yet there’s always those curveballs that come up. A skill he might not have had down pat today could be that which comes easiest tomorrow. Words he used with casual and spontaneous ease today might vanish next week only to return again a month later – or never again, to be replaced by other actions. It all keeps changing, sometimes faster than my mind and heart would like, but the little moments of pure joy linger on like a light in the darkness to lead me forward. 

I live each day for the joy he brings me in exchange for having his needs met and his wants considered and explored. The sacrifices are tough but the cost of not making them is too painful to consider. These children are only this small for this long and only this receptive for this long. There are so many things out there to make me sad. I do not want one of them to be myself asking down the road “why didn’t I do more?”. 



If anyone happens to read this and has ideas for something to post about, I’m very open to hearing them! You can contact me via comment or at galebird at gmail dot com. Hopefully I can master this wordpress thing and start including some nice picture posts soon!

(A Few Of) My Favorite Things

Last night was one of the oh so many where J has trouble sleeping. The little bear either cannot seem to settle down to sleep or he just can’t stay asleep. Whatever is going on in his little brain, it demands he be alert RIGHT NOW and yelling about it RIGHT THEN. 

I do not pretend to understand the whys, I just suffer the slings and arrows of Captain Capricious’s brain here.

However, amidst the throes of it last night, I could not help but to think of some of my favorite little things he does. They are things he will no doubt one day outgrow, but for now, I adore them so much.

– The way he shuffles out of the bedroom when he wakes in the night to find me, clutching his beloved Fat Cat/Miss Kitty by her paw.

– The way he can go nowhere without said cat

– His manners, which seemed to come from nowhere. He’ll say “pease” and “da yoo” mostly without prompting and at appropriate times. It’s beautiful, given how much of his vocabulary is a bitter struggle. I love that it is manners that took such a strong hold. 

– “sky!”… He points up, no matter where we are or what we are doing, and announces “sky!”. Someone else with him MUST repeat this, or sky will be said a thousand times.

– The fact that little makes him happier than being wrapped up in a snug hug with his face smooshed against mine.. unless he’s mad then I better move out of state. Fast.

… The list likely could go on and on. There’s a lot of cards I’ve been dealt, and there’s a lot of days that I am frazzled or ready to just run away and live under a rock in the woods. Things like this remind me why I don’t, and why I never actually completely want to, even when I think I do. He is one hilarious, sweet, amazing and challenging boy.

Who is screaming at his truck right now (what’d it do? I have no idea but it sounds BAD) so maybe that rock in the woods is a good idea… 😉

Oh, The Woes of Paper Trails

Today I took J-bear to an appointment with his primary care doctor.

This woman is lovely. You can speak with her easily and casually, she relates to you like you’ve known her for years and she looked after my son with tender care when he was dearly sick as an infant. 

Yet, since August and his inital diagnosis of autism, I have had no feedback from this doctor nor have I had any cooperation from the office staff. Referrals were a nightmare to get, staff repeatedly ignored requests for information… This was not what I was used to from her or her staff. 

Cut to today…

I walk in and explain about why we were there (follow up about his diagnosis, plus recent problems with intensive defensive gagging) and she just stared at me. She had never been told he’d been diagnosed with autism. She had no record of any of the paperwork sent to her, or requested from her, from all the agencies involved with his care. 

Let’s break down how many people would have had to drop balls here:

– Early Intervention sent her nothing?

– Tufts Floating Hospital for Children / Center for Special Needs sent her nothing?

– Kioko Center for Pediatric Occupational Therapy sent her nothing? 

– Building Blocks, the early intervention arm of the Northeast ARC, sent her nothing?

One or two groups dropping a ball, I could see. But all of them?! That seemed a bit far fetched. I felt so awful for his doctor. I truly did. She saw immediately to pushing his referrals through for the evaluations he has upcoming and made a plan for how to investigate the cause of his defensive gagging, including speaking more to his OT and getting his evaluation results from Tufts Floating back in two weeks to make sure we do not subject him to redundant testing. 

This weekend, I have to find all his glorious paperwork in my possession and put it together to copy for his doctor. I keep it in two binders since each therapist outside of his OT gives me a note at the end of every visit so it’s easy to just keep everything together. 

I admit to feeling so much better about his doctor but so much less confident about his office staff.

A funny story from the visit though:

J-bear decided while the doc and I spoke that he was going to open the office door and peer out. He would open the door a crack, peer out, say bye to whomever passed and close the door. He did this several times, finding it the most amusing game on earth. Whoever thinks children with autism cannot be socially motivated clearly has not met my little guy! Granted, he refused to talk to his doctor or when prompted by his doctor but he did speak with me, give her a high five, and demand to leave by saying all those “bye”s. 

One Year

One year ago about this time, I called early intervention to ask for an evaluation for my then 19 month old son. The evaluation was done at 20 months and services began at 21-22 months…

The changes are amazing.

A year ago, I had a sweet little boy who was so tucked into his own world it was frequently frustrating to try and do anything with him. He would engage people on a very passing level, if he did at all, and what few words he had ever attempted would disappear as fast as they came. He did not mimic anything done around him or with him, he never showed interest in other children unless exposed to them for days at a time…

I was so very scared I was just losing my mind. His doctor, despite all her best intentions, thought nothing was truly wrong. He was just taking his time coming around to speaking. The other details that I only realized in hindsight didn’t occur to her to ask about. I was so certain that the evaluation from early intervention was going to say the same thing… When they came back with serious communication and social deficiencies/delays I was actually shocked…

… And grateful.

Today, J-bear mimics. He uses signs. He speaks and repeats, not in the most effective of manners but he’s trying. He loves to see those who are familiar to him and rewards them with brilliant smiles and greetings when he sees them, offering “bye-bye” when we leave their presence. He on his own learned to say “dan you”/thank you when he is helped or when you give him something. 

His eye contact is hit or miss. He gets extremely overwhelmed in large crowds, bright places or busy areas (think pass throughs in restaurants). If an area has a lot of echo to it, he’s anxious to get the heck out of there ASAP. It’s just how he operates right now.

We do Early Intervention 1 time a week, ABA/Floortime 3 times a week (2 hours each go), Playgroup 1 day a week with ABA support, OT 2 times a week… His schedule is intense. It overwhelms me and sometimes has me right at the point of burn out.

But it has to be. It has to stand as it now does. This window is not open to us forever and I want him to soak up every skill and opportunity possible while we can. 

If this one year is any indication of our future I have such amazingly high hopes for my little boy. 

All New Things…

Oh look, another blogger!

I am the type of person who tends to get very verbose and figured hey, why not use that to share that which I am learning and that which I love with the world?

So this is where I start.

I am the 34 year old mother of a spectacular 2.5 year old boy. He stormed into my life in June 2010 and has left no stone unturned since then. This past August, he was diagnosed as having Autism Spectrum Disorder. It is a diagnosis that both shocked and did not shock us, for while he had been involved in Early Intervention since April of last year, the depths of what he was dealing with was easily ignored. He’s a sweet, loving child who cheerfully and determinedly engages socially with all those he is comfortable with – how could he have autism right?

It has been an interesting road, one I know I am only on the very beginning of. Autism is not a dirty word. It is not a sign that a person is broken or worthy of being ignored or shunned. It is something fundamentally different to every person and family who deals with it, for they do not call it a spectrum for no reason. Every person is different and this becomes abundantly clear when you deal with children on the spectrum. I thank God for my son’s playgroup showing me that… They are the most amazing children I’ve ever met, all dealing with issues related to autism or completely not related to autism spectrum disorders at all. Each one is special, precious and miraculous to me.

Rambling is something I do far, far too much. Anyway…

This is J-bear’s journey. This is everything he’s taught me, everything he’s teaching me, everything he’s learning and everything he’s experiencing. These are the things we have found that I feel better sharing with other parents because the worst feeling in the world is feeling like there’s no one in a place to understand you.

A few links:

http://www.myautismteam.com — A social networking site for Autism parents. It’s an amazing support! Parents are the best resource we have sometimes.

http://www.autismspeaks.com — Autism Speaks has great guides, especially for families new to autism and for those seeking to educate family members.

http://www.twitter.com/emergencypuppy — Sometimes we all need an emergency puppy to make us smile again.

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