A few short weeks from now, my older son George will be turning 10. This is a pretty big milestone for any parent. Not only will it launch George into double digits, it will mean that I have navigated the mysterious world of parenting for a full decade. Not just any old parenting, either – special needs parenting.
In his ten years, George has accomplished some amazing things in the face of his autism. I could go on all day about progress and milestones and potential, and I really am proud of his determination. Whether or not he is aware of his disability is debatable, but either way, he works really hard for every single victory. The smallest accomplishments that would go unnoticed in most families are a giant cause for celebration in ours.
The harsh reality, though, is that George still has some challenges, the most obvious of which is his lack of speech. He can talk – he has the physical ability and the vocabulary – but he doesn’t. His speech is mostly limited to requests, although he does occasionally make mind-blowing (to me) statements, like last week when he showed me his “screaming green angry gorilla”, which was actually a Hulk toy.
We cannot have conversations with George. We cannot say, “So, what did you do at school today?” and expect him to answer. His standard answer to most questions that are posed to him is “yes”, even when that doesn’t fit the question. Of great concern to me, if something bad was happening to him, like bullying or molestation, he wouldn’t be able to tell me about it.
That’s just the speech side of it. Social communication is an issue big enough for its own blog post. And as much as George has made phenomenal cognitive gains, in many areas he still functions well below the level of typical kids his age.
And so, with his 10th birthday approaching, my husband and I are preparing ourselves for the fact that he may not be as high-functioning a teenager as we have been hoping. When we got his report card a couple of weeks ago – the one that says he is “transferred” to Grade 5, unlike other kids who are “promoted” – I had a moment of pure terror at the realization that 8 years from now, he will be nominally eligible to graduate high school. It wasn’t the normal “Oh, how fast time passes” kind of terror. It was fear for George’s future.
Until now, my husband and I have been swirling these thoughts around in our heads, but today we spoke about them for the first time. We talked about preparations that need to be made and programs that need to be sought out. We talked about what the reality of life is likely to be when George reaches teenagerdom, just three years from now. He will not have a peer support system like most kids, and he will always be quite obviously “different”. He will go through the angst of adolescence without the ability to express himself verbally, and if we don’t keep a close watch on him, he might be the target of bullying. Other teens – or, Lord help us, some adults – might take advantage of his natural sweetness and trusting nature.
Talking about it makes it so much more real and so much scarier. It brings tears close to the surface and makes me feel very emotional. It makes me wonder if I, as George’s mother, have been doing enough for him. Is there something I have overlooked, some possibility that I have not explored, some avenue of opportunity that I have allowed to pass by?
Of course, I could be wrong. We could see George’s speech and social communication skills explode one day. I am not giving up, and I am not losing hope. I am simply being realistic so I can equip myself to provide the kind of support George will need as he navigates his way from here to adulthood.
Today, when I was out for a walk with my family, I kept looking over at George with an aching heart. He is my beautiful boy, with the most tender of souls, and I just want for him to be OK.
(This is an original post by Kirsten Doyle. Photo credit to the author.)
I know what you mean.
I cannot even begin to imagine what you must go through. George looks so sweet and loveable. You can see it in his eyes. You’ve done a wonderful job.
I would never claim to know how your heart must ache. But look at how far all of you have come and that should give you hope. A hope that things will get better. Stay strong.
Kirsten, You will do a great job parenting him as a teenager and somehow I feel with all that sweetness and goodness in him, he will navigate through teenagehood. Maybe it could have its pains and tribulations. But in the end, Kirsten, I am sure you will pat your back 🙂
He will not be ‘just’ ok! He will do great!
Kirsten – this popped up on my FB page today – I haven’t followed your blog but we do talk as friends on chat about our boys. It hit me really hard when Dan hit 4th grade and had nobody to help him with a bully. I have been an advocate for him from birth till now 15 as he enters into his sophomore year at school, his peers will be taking Drivers Ed and getting behind the wheel of a car – my son will not. We are letting him take the class in hopes that we can eventually get him behind the wheel, but right now he can’t.
Hits you in the gut so I understand and always have understood what you are going through.
Hang Tough my friend although things need to be talked about no decision has to be made right now about George’s future he will be one way one day and different the next.
I believe you are doing the very best for both your boys, and nobody can do more.
I’m sending you lots of love.
I just stumbled onto your blog. Your words ring so true as conversations I have had in my mind about our future. I am a mom of 2 boys with special needs (one diagnosed with Autism, one not yet diagnosed). I have no idea what the future holds for us, what their worlds will be like.
I to am Running Warrior Autism Momma!! I am running my first 1/2 marathon Oct 2013 and I am raising funds for my son’s Special Needs school! Keeping being an amazing mom!!
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