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.

 

1.17.2014

A voice of her own

There is not a day that goes by that I don't think about Sophie's lack of reliable communication. While I know we are doing the best we can given the circumstances, and we have wonderful support at the school, I still think if there isn't anything else I could offer her to help her express herself.

There is no doubt in my mind that Sophie understands much more than she is able to express. I also think her thoughts are probably quite complex but she is limited, horribly limited by her lack of ability to voice what goes through her mind. Her personality is such that after a couple half-hearted attempts she gives up and moves on, doesn't get frustrated. You can almost feel the shrug and a "nevermind". But- we do mind! We want to know what she is thinking so badly...

She is learning PECS but that system is limiting in itself. It is very good for requesting tangible objects and she does well with bringing us cards of food that she wants. It is good for her (and us) to be able to at least show us food preference, or make choices. However, when she turns to us while watching Thomas, eyes aglow and intently peers into our eyes voicing "upupupup" or "buh buh", PECS doesn't help because she doesn't want "apple" or "grapes" or even "cookie" (although she won't say no to that of course). No, she wants to share some excitement or joy with us and we miss her point. We give her lots of positive feedback of course but it's like fumbling in the dark, because we don't really know what she's trying to say.

Another problem with using the PECS binder which is not so much an autism issue, but a general preschooler issue is that whenever she is presented with it, she flips to the "junk food" page and starts requesting food. It's like you sat down your toddler and said "do you want to talk about trees, or grandma or park or do you want a cookie?". What would a sweet-toothed child reply, every time? Of course with a typical child you could not mention the cookie and they would turn their attention to the other topics. But a child like Sophie, if we removed the picture of the cookie, she would go for granola bar, or grapes, or blueberries- in other words she would never want to talk about anything else unless it was on her terms- she wants to talk when she gets an idea and when I go and bring out the book her idea is lost (not that I have a picture for it anyway, since I don't know what it is) and is replaced with a desire to ask for cookies.

On Facebook I got some suggestions to look into sign language. While I like the idea of it a lot (minimalist, no clunky binders, no iPads), I just don't see how she would do it. Sophie is very particular (understatement?). While she has very precise fingers and is "able" (in theory) to execute fine movements, the truth is- she doesn't. She uses her hands very rarely and for specific things only- she is very tactile and likes to sift through sensory bins, her brother's hair or peel the outer layer of her diaper. She never uses her hands to let's say feed herself with a spoon, hold a pencil, even a toy. She never did any sort of finger rhymes, and even if I grab her hands in mine and take her through the motions, she just lets her hands go limp and doesn't try to imitate the motions. But I will speak to her speech pathologist and see what he thinks about it. I might learn some baby signs and see if she would be receptive to the idea.

I am always thinking about technology as literacy is my ultimate goal, but truthfully am quite overwhelmed by all that's out there. We did meet with an AAC clinic and have another meeting in February. It's my impression that we have many more meetings than any tangible action and it's really up to me to implement any system that I want to try, just like I made all the PECS myself. Of course I realize there are no magic solutions, just a lot of hard work and a child like Sophie who is generally calm and easy going but very elusive, is hard to work with.

I don't have a good ending for this post because this is how I feel- doubtful, overwhelmed, not quite sure which way to proceed, where to go from here. I just know Sophie has a great potential but she needs to be able to communicate to realize it. And I want to make 2014 the year she gets just that- a voice of her own.

 

 

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