J-Bear and Me

learning to navigate the world, j-bear style

Tag: hope

No One Autism

Autism is not exclusively the realm of children, despite what the media puts forth. Autistic children grow into autistic adults. Crazy notion, eh?

There is no one autism. There are hallmarks that allow for diagnosis, but the adage told to people just becoming familiar with the autism community easily holds true: When you meet one person with autism, you meet one person with autism.

What works for J may or may not work for his classmates, just as what works for them may not work for J. This is life. Don’t we all deal with this every day? He is cut from his very own unique piece of cloth and he’s going to forge his own way whether any of the rest of the world likes it or not. It’s my job, and the job of anyone who actually loves him, to be at his side willing to help him find what he needs to do that.

Unlike the images that Autism Speaks puts forth, I see his future and that of his peers as tremendously exciting. The world is vast, and the possibilities are endless. I see this because I see so many adults with autism sharing their stories, their struggles and their successes. They lay facets of their life bare for the world to see to show just what can be, and for that I am both awed and amazed. Awed, because of the bravery it takes to be honest in a world that is dominated by people who’d wish to marginalize them and amazed because they’ve all showed me I do not have anything to be scared of.

J’s path will intersect with many other autistic experiences but it will run it’s very own course. He will grow from a boy into a man and I am so curious to see who that man shall be. I cannot say I am eager, for I do not want my dear little guy to grow up too fast on me, but I am excited. It’s like being deeply engrossed in a wonderful series of books: each book is so exciting, and you keep giddily awaiting the next volume to find out just what the protagonist will do next.

This is our autism. We don’t need to wear blue. We just need to live out loud and show the world the beauty we’ve found.

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.

Gratitude

I had another post started and ended up crying too hard to finish it. Why? Cause I’m a sap, that’s why. I cry very easily. It’s embarrassing.

This time it was about the story of a mother and daughter. The daughter has autism. The mother, for reasons known truly only to her but speculated at by those who have both been there and not been there, attempted to end her own life as well as that of her young daughter. There are not words for the horror and fear this sparks within me.

So after I read the story this morning, I sat watching J. His word of the day is again “no”, so every question you ask is answered with that. No one could make “no” sound sweeter than J. His little voice is just a beautiful thing to me. We fought over the idea of sneakers. We fought over wearing a sweatshirt. We fought over leaving his stuffed cat home. It was a struggle and a half this morning until the moment he arrived at his classroom…

I would change none of it.

I am so scared that a day might come when my little boy is a very big boy and he cannot manage how he expresses himself. I am so scared of the idea that one day I might be scared of my beautiful son. Part of me wants to keep him my sweet, loving little bitty (well, not so little bitty) guy forever. I know his nature. I know he is sweet right down to the very soul of himself. He is empathetic, he is loving, he is naturally observant and kind. He has limits, though. When his system is overwhelmed, I do not know what may happen years down the road.

So today, I am thankful for the little boy I now have and the chance to just love him. I hope that as he grows older, supports are always there to help manage raising him and helping him. I also hope that my friends out there who find themselves being primary caretakers also know that hey, we’re all in this together. Let’s not let any one of us sink. If you find your mind wandering off into dark, scary places… Well, I may be crap at phone calls but call or send messages. Raise the red flag and I’ll be amongst those who rally to you to help you get through it.

Our kids deserve it and so do we.

Brighter Day

Last night I went to bed on such a low, sad note. Yesterday was awful.

This morning, I woke up to find that a request for a retweet had not only been answered but been answered warmly and happily!

If you want a great twitter to follow, check this gentleman out. He spreads joy in NYC one candy cab right at a time: https://twitter.com/CandyCabNYC

Our story is getting out there, little by little. You can help too! Retweet, reblog, share… You can share his Team Jacobly for 4 Paws page (here) or just a link back to the blog.

We’re going to blow this goal out of the water I hope. 

Update on Emitopalooza 2013 (and news!)

So!

A visit to the doctor was had. I feel better about things. We discussed the situation at length. The chance of it being behavioral has been proven to be slim. His occupational therapist tried to recreate a couple of scenarios where he was thought to force vomitting and it never happened. There is also no consistency to the whens, wheres and whys of it beyond the fact that he does gag a lot and gag easily. It’s never been done to avoid anything or as anything worse than an accidental side effect of crying too hard and triggering the gag reflex. 

The ENT feels it is his huge ol’ tonsils, but a sleep study (which is now scheduled!) has to be done to rule out a few other things pertaining to his snoring and his being monitored for seizure disorder. Based on his, and that we discovered that a dose of zofran was the only commonality between days he did NOT vomit in the past two weeks, his doc decided to stick with zofran once a day until we see what happens with his potential tonsillectomy. If he has the tonsils out and we’re still all puke-faced around here, I might lose my last marble.

But today did bring good news!

I spoke with 4 Paws for Ability and after discussing J’s needs and what he needs the most assistance with it was decided that an autism service dog would be a great fit for him! We’ll be receiving a contract and further details in the coming weeks and have a lot of fundraising ahead of us but the fact that this is now all getting started and there’s hope he can receive such assistance left me sitting down and crying when I got off the phone. 

People see my son and see wow, a little kid. Little kids tantrum, little kids run off, etc. They do not understand the severity of what goes on with him without living in my shoes day to day. They can’t, and I do not expect them to. The blessings this dog can bring to my family… That’s what left me crying. I could have help calming my son, help finding him should he wander, help keeping him close so he doesn’t get lost from me in a busy place… I could give him the care level he absolutely needs, deserves and requires at all times. The dog can be there for him in so many ways that it is hard for me to be there for him without literally ceasing to live life. I am just blown away right now. I am not one who knows what to do with good news, after all.

What a day, what a day.

Oh, my dear boy.

Dear baby bear,

Today we sat through a far more brief appointment at the Center for Special Needs at Floating Hospital for Children in Boston. Today, they told us the particulars of what, where, when and how about you.

You are as of today diagnosed with autistic disorder. This is ‘classic’ autism. 

There is so much in the report these wonderful clinicians gave us that both gives me hope and breaks my heart. It hurts me to see words that, down the road, could be so painful for you to read about yourself. It hurts me to envision the challenges you are going to face. It heartens me to realize how far you’ve come and how well you’re cutting your own beautiful path. When you are compared to your neurotypical peers, you are roughly a year behind in social and communicative development. When you are compared to your own progress in this past year, you are amazing. 

… And we’re not stopping.

Clinicians who see you only briefly get but a snapshot of who you are. A lot of what they saw is very, very you and yet they do not get to see the side of you enjoyed by those who love you every single day. That’s a gift you save for us and a gift we want to open, slowly and gently, for the entire world to share in. You are inventive, dogged, determined, silly, joyful and above all so very, very loving. This is who you are and who I will do my best to always allow you to be. 

This diagnosis won’t diminish you. It’s going to be part of that which hones all of us, side by side, and part of that which makes you so utterly unique and amazing. 

The future is scary. You will be 3 this coming June and it saddens and scares me to think of you spending full days at school almost the whole year ’round. I ache to think how much I just want you to be a free spirited little boy, playing outside all summer and being just full of excitement and exhuberance… but we will find a way to have that AND have your very specific needs met. Your learning and growing will be fun even if at times it is hard. We have been so very blessed so far to have wonderful people working with you, people who bring light, laughter and energy to their sessions with you and make such hard work seem so much like play. It’s my job to make sure you always have people like them. 

You’re going to be a grown person one day and look back to read these things just to say “ma, you ramble”. And all I’ll say as I gnash my gums is “duh”. 

I ramble because I love you. I ramble because my gosh little boy, such hopes I have for your future. You don’t need to be president or win a Nobel Prize, though those things would be cool. My greatest wish for you is that you are a happy, secure, confident adult pursuing that which brings him the greatest peace and joy.

Just don’t make it puppy sacrifices or some such, okay? I might have to object.

I love you my little monster,

Mama.

Image

j-bear, 10/2011, visitor’s dugout at Fenway Park after throwing gluten free cookies in the outfield. sorry, grounds crew. 

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?”. 

 

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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!

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