The Boy In The Bath Tub

There is a beautiful boy, with the sort of face that supports stereotypes of stunning autistic children. He is three and a half. He is in the bath, and his mother sits beside the bath with a camera. The camera is not to capture funny pictures of the child laughing in an over-flowing floppy tower of bubbles, it is not there to capture him playing with toys or other joys. It’s just a thing to do, taking these videos and pictures. Because every day is the same, every day is dictated by a three-year-old boy who the mother struggles to understand. She is exhausted, and it is hard to find activities she can do around the child that don’t upset him. She can’t sing or sit in the wrong place – and in a year from now her son will not even let her talk without hitting her in the mouth and biting her arm – but she’s allowed to sit by the bath, with a camera, and so she does.

By corrine klug

She decides to attempt to engage him with speech. He is distracted, staring at nothing or something in the distance, but she captures his attention by using his name and asking him to say hello. She gets no response but tries again. Gently encouraging, no pressure, trying to keep things upbeat, because he has a tendency to get upset quickly. He looks at her, he looks thoughtful, eventually he says, “one, two!” The boy can count to ten, but he has trouble using any functional language. She’s been told there are no promises he’ll ever talk in a sentence. But for now, “one, two” is communication, and his voice is something to be encouraged. So while it’s not the expected or wanted answer, it is an answer, and she praises him, “one, two, good boy!”

No more words come from him, but before the video footage cuts out, he turns his eyes to his mother again and does something that he knows she will like and that is expected when in front of a camera: He smiles. Briefly, but he smiles. The mother is happy, she turns the camera off, the footage ends. Her day continues, much as it had all the months before and months after that.

I watched that video today, I found it in my old archives. It feels like someone else’s life. The seven-year-old son I have now can talk in many running sentences. His speech is unusual, but he can speak in more than numbers, and his words make sense to those around him, and those are things to celebrate. He now has good eye-contact, and he smiles naturally and often. It’s like we’re both not who we were. It feels like there is so much “autism” between now and then. Years of therapy, and specialists, and tears and tantrums and violence and fear. And learning, so much learning. From there to here, was the hardest experience in my life, and probably his as well, though I don’t know if he remembers it. There have been times, many times, I wish I could not remember it, but I have to, to recognise how far we’ve come and not just how far we’ve yet to go.

I don’t know if anyone in my life back then knew what our lives were like behind closed doors. I often thought about all the people walking by on the street, just going about their lives, walking past the madness going on in our home without a second thought. When I’d take my own son for walks in his stroller – always the same circuit, always the same direction, over and over – I’d count the houses we passed and try to figure out how many autistic children there must be in each neighbourhood according to the latest 1 in 110 ratio. Wondered what else went unseen, and thinking about how naive I once had been about what life could be like where no one else can see.

Now I’m one of those people just going about my life, but I still read and care about the other children and mothers that like my son and I, are trying to find a way to communicate with each other, to be together, to find and hold on to smiles. For some families, my boy in the bath tub becomes the man in the bath tub, who still answers a “hello” with a “one, two.” For some people reading this, you’re just starting out and wondering which path your life and your child’s life will take. I don’t know, I don’t have your answers. But know this: You are not alone, no matter how alone and misunderstood and scared you feel, you are not the first or only one going through this. When you get the chance, capture the happy moments, make note of every little progress, celebrate even the words that don’t make sense yet because they could be the start of something wonderful beyond words.

“One, two…” may not be a conventional beginning of a sentence or a vocabulary, but it is a good place to start.

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31 Responses to The Boy In The Bath Tub

  1. Matty Angel says:

    Keep doing a great job :)

  2. DQ says:

    This has me in tears, too, because your story mirrors some of mine, and your son’s journey mirrors a lot of my son’s. I am not sure how many videos we have in our archives of my son doing similar things.
    In the 5 years since diagnosis, my son has gone from being over 2 years delayed in speech and language to as of just this week, almost completely within expected age range for his speech and language. The hundreds of hours of speech therapy and ‘speech homework’ he has done, the tears, tantrums, angst, dread and wonder are all crowding in on me just reading your post and watching the video of your truly gorgeous little boy.
    Thank you for sharing such a personal view into part of your journey.

  3. My son didn’t seem to mind my voice…which is low and alto. When my mother of sister would try to talk to him, he would struggle to get away. This was at 18 months, too young to have an “attitude”. It used to be the sensory sensitivities were much more discussed, rather than the “lack of empathy” (takes one to know one) blather. I had my son’s hearing tested. At the sound of a typical woman’s voice he heard 10x more acutely. Only in this range was his hearing so acute, it was a ‘spike’. That explained why he wanted to get away from their voices. The speech pathologist said it was nothing to worry about, that many kids were much more afflicted. You turn your volume up 10x from what you are used to. See how long you last in that environment!

    When we start to have empathy for our children/students/patients–I think we will discover just how brave they really are.

    You are so spot on in this post. I remember.

  4. nostromo says:

    Nice!
    I have the reverse, my son talking in a few old videos I took, not knowing then that he would stop talking. Pointing too, and imitation skills, its all there in this video, but he doesn’t do those things now. http://www.youtube.com/watch?v=MxwsSSTaPII

    Yet I see there is still some debate over whether regressive Autism is real.

    http://en.wikipedia.org/wiki/Regressive_autism

    *Rolls eyes in direction of Science dudes*

    • What a lovely boy.

      I don’t know much about regressive autism, except that it raises controversies over the cause and whether there is a separate condition or unique kind of autism at play. I do know that there are multiple “autism trajectories,” that there is no single way that autism develops and progresses across all children. It’s an interesting topic that I might look into further at some point.

      Thanks for your comment nostromo.

  5. Tsara says:

    Wow, this is beautiful! Thank-you so much for sharing!!

    There must something in the air! My last two posts (on my autism Facebook page) were inspired out of the blue, and about how far my youngest two sons have come. How far we’ve come as a family! And it is important to remember. For us, for our children, and for the families who are still struggling to see a future.

    You know, with so many other things that could be in the air, this is very nice indeed!! Huge hugs to you and your beautiful boy in the bathtub!!!! xoxoxo

  6. you really wouldn’t know that he is autistic if you were to interact casually. He’s so responsive and friendly. What a change from how he was! Accolades to Mum and Dad. It has been a hard road. I remember how adamant he was about going in a particular direction in his pushchair. His anxiety levels were always so high.

  7. brenda lowry says:

    I had a son with aspergers in the seventies and eighties before anyone knew what it was…..I was a bad mom,people would say give him to me i will straighten him out for you…….our lives were a living hell…..thank God his two children were born in the 21st century.

    Brenda

    • I assure you that things are still often like that in the 21st century. Mothers still get blamed, the “just give them a good smack” theory still abounds. We sadly still have a long way to go.

      Thanks for commenting Brenda.

  8. Karen says:

    Love your work. Keep up the inspirational work. :)

  9. Joanne says:

    I remember you sharing that video with me. Your son has made such huge growth. It is a testament to your parenting, your advocacy, and your strength. *hugs*

  10. Bec says:

    This was just beautiful.

  11. Very well written. Thank goodness life generally gets easier for them and us as our kids grow older.

  12. akbutler says:

    Crying here too. I can’t look back at the videos yet. I did once and all I saw were all the signs I missed. That was a while ago, when things were still hard. But he has worked so hard and tries so hard – I am in a different place now. I may have the ability to look back at it now. Thanks to you.

  13. We (me and hubby) used to call our lives with our little boy…behind closed doors ‘the twilight zone’…sometimes we are back there again…but not too often…mostly now we call our lives ‘the new normal.’ It was lovely to read about your looking back and looking forward.

  14. Mum to a special little guy says:

    Reading that was like going back in time for me too. I remember when my 6 year old was quite similiar at age 3, with it being hard to get his attention, unless it was something that he was interested in/ wanted to do. Except my son was still totally non verbal at that age, and did not say his 1st words till he was around 4.5 years old. Even now his speech is still limited and he does not talk in sentences, he does put 2 and 3 words together a lot more now though, so I still keep hoping that it will happen.

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