How far we have come.



I thought I would break up the blogs a bit with our journey down particular areas of ASD with B and where he has come. This week I thought it would be fitting to discuss the topic of Speech. This was one of the very first ‘flags’ in our journey.
Byron’s journey has progressed immensely since it began. It’s only when I sit down and really think about the progress made that I realise what a battler he has been. Too often I have looked at the places we need to go rather than the journey that has already been travelled.  There will always be more to do and worry about. Any ASD family will probably tell you that. One day you think you have a handle on shit and the next…..oh great. A new issue/ obsession/ habit to deal with. But hey…it keeps life interesting.
I guess, once we were given the official diagnosis both my husband and I had listed in our own heads the things that generally come with the autism turf that you need to do/deal with. Therapists, funding, time management, lifestyle, education, social issues and impacts. There is a lot and I was also prithy to over compensate and prepare for the worst. Overwhelming is the feeling that often comes to mind. But once the dust settled a little it was time to simply focus on what Byron needed right now rather than thinking about what will happen when he is in school, high school or even once he left school. We had to pull back, re focus and recalibrate if you will, to what was needed right now.
So firstly there was therapies we needed to do and for B the most pressing issue was his speech. Like I said earlier this was the very first thing that was flagged. He had stopped progression and language once he hit 17 months. He had been doing speech for just over a year before the diagnosis ( a year was pretty much the length of our whole diagnosis process) so we knew we had to continue down that path and even increase the sessions to get the ball rolling faster in this area. Individual and group sessions were vital and really pulled that little voice out that we had been dreaming about for so long. One of the heartbreaking things I can always clearly remember is the comments by other kids to me and adults asking “why can’t he speak?” or “He should be able to answer me by now?”. Ahhh that was a torture period, because you were met with extreme concern or utter disgust by other people. And back then I myself didn’t have a clear voice to be able to answer it.I was either speechless or I would channel my inner Ramsey Bolton and totally lose my shit. (On a bad day.)  Not to mention the huge meltdowns he would have at any given time because…he couldn’t communicate what he wanted or how he felt.  The frustration speech delay causes kids toppled with peoples ignorance and impatience can only lead to more anxiety and meltdowns. As well as your own.
The group therapy was excellent and still is in getting him to communicate, share and learn with others. Sharing especially was something I didn’t think would come under the banner of speech but it really pushed him in turn taking and sharing resources with his peers. It also brought out the emotional meltdowns he had which now flagged the need for occupational therapies but this was a good thing not a negative. Over a six month period we saw a huge improvement in
  • Increased awareness of others
  • Eye contact
  • Language and speech (he was talking in sentences at last!)
  • Sociability and confidence
  • Decrease in emotional melt downs to a smaller degree
  • Play skills
  • Context and comprehension
  • Learning concepts and task working
Speech is still a huge issue and although he gets better every day there is still processing issues in what he wants to say to actually saying it. For example, massive repetitive sequencing until he can think of the rest of the words. Does anyone else have this issue? Also chewing things…everything. Again I will cover this topic on it’s own further down the track.
It can be heartbreaking at times when he is so excited to tell you something and he struggles to get it all out. But that’s me as a parent…the constant worry wart!
 The positive thing is now he doesn’t get upset at himself any more. And he will always attempt to give it ago or try a word again! He is also very lucky in having a beautiful class of kids who are incredibly understanding.
For the last year and a half we have been participating in a study at Griffith University which is focused on ASD learning, literacy and reading. Later on I will go into more detail about that area, but one key thing I did learn was how much story telling for Byron, brought along his speech and imagination. It was a key game changer in bringing to life the voice inside.
Now story telling can indeed itself be a full on event. The notion of the quite, sitting peacefully reading to your child concept did not apply to us in this situation.   The whole body, room and everything in it had to be incorporated (Well in the early days). A lot of little ASD bodies cannot sit still at all for any amount of time. That is agony to them. And for Byron weighted blankets and toys had zero effect in helping him calm and focus so we went the complete opposite direction. Story telling became completely energetic, exhausting (for me at least) and highly time consuming.  But…this was the first key to success. With that entire ruckus we made while storytelling, words, stories and ideas all sunk in. And now much to all of our delight…story telling is a relaxing and more soothing event.
A few other techniques that did work for us also were flash cards. Has anyone else had success with these? I would love to hear your stories. It took a while to get them really to take effect and at one point I started to give up. It was really difficult to get B to use eye contact with myself or the card in order for him to even see the word. Again with flash cards, using the whole body and putting the word into a verb context was the only way to get him interested. Actions, actions, actions. So ultimately Occupational therapy came into unison with the speech therapy. I will cover OT at a later date as well. Anyway, with perseverance and submitting to looking and sounding like a lunatic for my neighbours, ( whom I’m sure got worried at times by the weird ass noises coming from our house) we started to see more words and sounds added to the vocabulary of little man.
Today where we are is so much better. The kid can’t really keep quite. Loves singing, telling stories, jokes, always the first to introduce himself to other kids…you name it. The one little surprise we had was once his little sister was born his language just blossomed. I believe it’s the feeling he took on of being a big brother. All of a sudden he was her teacher. I even catch him teaching her to say words and using the techniques we use on him (heart melt and palm face in one!)
It’s a battle and will continue on throughout his primary education but little by little he is getting there and flourishing which is all you can hope for. Like I said before, it’s not until you look back that you can see how far you have come. And that’s a thing so many of us push to the side. We can’t always be focusing on the one day, it’s the today that really only matters. Well…that’s what I try to remind myself every so often.
If anyone has any techniques or therapists they would like to share, please email me so we can add it to the links page or share your insights with other parents.


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