1.23.2014

How to accept your child has autism

As I'm sure most bloggers do, I frequently check the stats on my blog because a) I'm amazed any people read my words at all and b) I'm fascinated by all the varied regions of the world where people are finding something of value in my writing (I hope that's what they're finding anyway). And, I often look at the keyword search to see what readers typed in Google before being directed to my blog. Which brings me to the title of this post.

At least once a week a version of this phrase leads someone to our story. It always makes me stop and reflect for a minute- I imagine a newly-diagnosed child's parent, desperate for some reassuring words, plug the words into the search engine and hope to hit an article that will shed some light on their journey.

Google is a fickle advisor. On one hand it can be an overwrought hypochondriac, laden with worst-case scenarios and outlooks so bleak they haven't even occurred to you beforehand. It can also be saccharine- sweet, flooding you with feel-good stories and inspiring videos (set to uplifting music). But there is one thing Google is not - judgemental. New parents might tip toe shyly into established blogs and Facebook pages, trying not to get anyone's back up, careful to be mindful of their tone and clear in their intent...But when they're alone, when it's just them and Google like the wise oracle before them, what do they ask? "How do I accept my child has autism".

So, let's pretend that these parents are not googling alone in the night after their kids have fallen asleep, probably following a long, confusing and overwhelming day, perhaps with tears running down their face. I'd rather they came over to my little apartment, sat on my well-worn couches, we'd set up some snacks for the toddlers (we could even do gluten-free!), put on some Thomas (that is not negotiable here I'm afraid) and of course a big pot of coffee for us. And we'd talk about this question, together.

And what a loaded question it is. Even the fact that it starts with the word "how". There is no simple "how to" reach acceptance I'm afraid. Recently, I've seen some posts online, along the lines of "things i wished I knew when my child was diagnosed", or even letters to your freshly-appointed autism parent self. I liked the idea of sharing some thoughts that might help to ease someone's way.

These are some reflections that helped me reach a place of peace and optimism and perhaps can be of benefit for others too.

It is common to feel a wave of emotions in the months following a diagnosis. There are usually dark feelings- anxiety, panic, grief, sadness. Commonly, the overriding emotion is fear. You might suddenly feel like you don't know your child at all or you don't know if you can provide everything he needs. You're arranging appointments, therapists, doctors, filling out forms. It might feel like parenting has turned into some sort of bureaucratic exercise and not the joyful moments you anticipated.

Well- breathe! The child in front of you is the same child you gave birth to. The same newborn you cradled and fussed over, the same infant whose chubby cheeks you couldn't get enough of, and the same little toddler that charms you with his cute ways. There is a lot of emphasis put on "acting fast". Almost as if you're to whisk your child from the pedeatrician's office where he received his diagnosis and straight into the perfect therapy set-up where time is of the essence and every minute must be used "productively". All of a sudden there are "experts" telling you what the best thing for your child is and no wonder parents feel like they don't know what to do with themselves.

Really think about what you want for your child. Don't let yourself be pressured into something that doesn't feel right or that makes you feel uncomfortable. Contrary to what you are led to believe there is no "magic window". You won't ruin your child's chances of success if you proceed with caution. If anything, autistic children need more time to mature, to develop.

Life is the best therapy. There are so many things you can do with your child that will stimulate his brain, just like with any toddler. Your child might be delayed compared to his peers - don't focus on his chronological age as much as his level of development. Meet him there and see if you can take him to the next level. When Sophie was 2.5 she loved to play peek-a-boo. While that might be a "baby's game", that's where she was at her level of development and so that is what we did.

Don't give in to fear. Our society is rooted in fear- it drives the media and influences so many of our decisions- risks, probabilities, statistics, case studies- remember that many "scientific studies" are either sponsored or even performed by companies who directly benefit from the results. Alternatively, scary "findings" help newspapers sell their stories. Look deeper, find hidden meanings, or preferably avoid them all together. If something really relevant is discovered, it will become public knowledge soon enough.

Take it one day at a time. This is sort of related to the fear thing too. Don't spend too much time thinking what will happen in the years to come. The future is uncertain for all of us. Focus on the here and now.

Seek out positive resources. I tend to read writers who make me think and reflect, but who generally strive to be positive. Writers who spend the majority of their time being angry or resentful, or picking petty squabbles with other writers I give a wide berth. You don't need that cluttering up your energy, not ever, and especially not now.

Read inspiring stories. Love the child you have now, but don't be afraid to dream of the possibilities. I choose to believe Sophie will find her voice, learn to communicate. I also believe that we don't know the extent of her cognitive ability. I always talk about and to her as if she understood everything. It makes me mindful of my language and also forces me to only say positive and encouraging things. I believe our attitudes shape our perceptions.

Last of all, admit the grief you are feeling. Are you mourning the loss of the child you expected, the parenting life you thought you'd have? Reflect on those feelings. That would-be child was just a creation of your fantasy, he was never real. The child you have is the one you were meant to have. Get to know him as a person- what does he like, what brings him joy? Form a relationship with what is, don't hold on to the would have beens.

Know it will get easier. Not parenting a special-needs child maybe, but the emotions, the feelings. You will learn to adapt to your new reality, it will become your normal. Give yourself time to adjust. Like with learning any new skill, there is a learning curve. Expect to make mistakes and learn from them.

Reach out. There are many wonderful communities online. Find ones that are kind and supportive and coincide with your values. Just as there isn't one right way to parent a typical child, there isn't one way to parent a special-needs child. Choose a community that you feel comfortable and welcome in (we do have a Facebook page *cough, cough- shameless self-promotion).

I hope someone can find a sense of peace in my ramblings. I don't know a lot about anything, certainly not about philosophy, but I am pretty relaxed usually (that's with 4 kids and a half-witted dog- no offence Mimi), so I just thought I'd pass that along.

 

11 comments:

  1. (ThIs is the husband writing!)

    That dog is so half- witted that if you were drowning it would swim out to you and pull you to the bottom of the lake. But she is cute and affectionate, even I have soft spot for her.

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  2. Fantastic post and full of of helpful stuff. Wish you had of been around when my Nick was Sophie's age!! I also wrote a post about this a few years back and a lot of people contributed with their own thoughts. I must find it for you... Have a lovely weekend.

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  3. On the night of our Diagnosis Day there was a documentary on TV of another disabled boy, a bit older than Ville is now. Not going into the details, but the overall attitude was grim and heroic, an air of disappointment hovered over the scene. And then the Internet; slices of somebody's brain...
    It would have been nice to read this post back then.

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    1. I know the media is generally not helpful that is why I stay away from those documentaries. Every life can be edited to be either grim or inspiring, while it's always a mix. I sent you an email last week it said your inbox is full :)

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    2. I did get one mail, I've not yet answered it. Need to attend to that inbox. And organize the photos. And the garage. The law of entropy is always lurking out there.

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  4. What a lovely post - not rambling at all
    its so important to have the right perspective
    xoxoxo to you and Sophie

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  5. Thank you for this! Have only just started the process of getting my 22 month old teated for ASD and this gave me a healthy dose of perspective! Thanks!

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    1. Oh just saw this. Welcome to the journey! All the best. Check out our Facebook page too :)

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  6. We are a week out of finding out if my son (4) is autistic. I'm sure he is, but as the day gets closer I find myself crying myself to sleep every night. Wondering what I did wrong. What I could have done to prevent it? What will I tell his friends parents or teachers? I'm so scared. Thank you for your post. I really appreciate the positive thoughts.

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    1. Hugs to you. It's scary and overwhelming at the beginning but it does get easier. I'd stay away from mainstream media portrayals of autism and autistic people- it's almost always slanted to the gloom and doom angle and makes autism seem like a frightening tragedy- there are many blogs out there similar to mine where life with an autistic child goes along quite normal and quite good!

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