I’m far more interested in reading about real life stories told by real life families. I want to be able to read a story and relate and not just fill my head with facts that I’ll likely forget later on. So that’s why I’m going to share Harley’s diagnosis story right here. I have touched on parts of it in some of my very early blog posts but for all those new readers: I want to share “our” story and how I feel personally about early interventions services and how they have or have not affected our family as a whole.
There are a lot of reports around lately regarding early intervention (E.I.) and the validity of it. Which causes confused parents of newly diagnosed children to ask questions such as: Does early intervention really make that much of a difference?
Will my child suffer if they don’t receive any?
And is it true that those who do receive it have a much better chance at success in life?
Well, my short answer is that there is no one treatment, therapy or intervention that is the best one for your child. Because different children need different things and we all know that what works for one child may not work for another. But I will boldly say that from our experience: Yes. It does work. I would highly recommend staring some sort of intervention as early as you can and then add or subtract interventions as you see them become necessary or ineffectual. And the key word here is to start early.
I was reading this recently:
Is Early Intervention Really Effective?
After nearly 50 years of research, there is evidence-both data-based and reports from parents and teachers that early intervention increases the developmental and educational gains for the child, improves the functioning of the family, and reaps long-term benefits for society.
Early intervention has been shown to result in the child needing fewer special education and other services later in life and in some cases being indistinguishable from non-handicapped classmates years after intervention.
(You can read more from this site > HERE < ).
And what really struck a chord with me was this line: ‘improves the functioning of the family’. Because it wasn’t just Harley that was suffering. It was every last one of us who were at the brink of exhaustion each and every day. We all felt incredibly helpless, overwhelmed and alone.
We know first hand that E.I. works because the difference between our two boy’s diagnosis stories is as different as night is from day. Lucas has always had the upper hand being the younger and second diagnosed child. Because we already knew the telltale autism signs to watch out for, our house was already running in an ASD friendly way and there were visuals for everything from bathing and cleaning teeth through to step-by-step pictures of getting dressed in the morning stuck up all over the wall. And we had already learned through trial and error how to avoid a lot of possible meltdown triggers. So he wasn’t confronted with clueless and confused parents in the same way that Harley was.
But Harley, my poor sweet Harley hasn’t had it nearly as smoothly as that. I can remember diagnosis day really clearly like it was yesterday. It was a week before Christmas 2008 when we were first told that we were looking at autism. He was 4 and he was in his last year of pre-school. Already too old to access any early interventions at all. Not that we even knew what that was back then.And prior to staring pre-school he went to an in-home day care setting with 4 other children for 2 days per week.
I would often talk to his carer and to his teachers in pre-school asking them if they thought there was anything that I should be concerned about and I was always told “ No, he’s fine. He’s just a typical rowdy boy.”
And all the while we were at home literally tearing our hair out in frustration because our child could barely talk, couldn’t focus on anything for more than a second or two and screamed and tantrummed for hours on end every.freaking.day. So naturally, it continued to bug me that none of the early childhood teachers had ever noticed anything ‘different’ about the way that he behaved or interacted. It also irritated me that friends would continue to down play any of my concerns. It felt like everyone had labelled me crazy and I began to seriously doubt myself and my parenting skills. But now I can see that none of them were trying to hurt me – they either honestly didn’t see it or didn’t want to get involved so they said what they would want to hear themselves if they were in my shoes.
None of them noticed that he lined up toy cars in colour order. None of them could see the obsessions over routines and none of them seemed bothered by his lack of social skills. He was “just a typical boy” I kept being told every time I voiced a concern. In fact, I was made to feel like I was being incredibly neurotic. I was reassured time and time again that there was nothing to worry about and that if I chilled out a bit more that things would eventually calm down.
But I just couldn’t. Something didn’t sit right within me and I had begun to start my own research because I desperately wanted answers.
Then one day, I walked Harley up to the day-care lady’s door and he pitched a massive fit. He screamed, he kicked he flailed and he was off the scale. The carer turned to me and said: “What’s wrong with him? I’ve NEVER seen him like this”.
And I was floored. I looked at her in utter disbelief and replied: “You can’t be serious. What do you mean you’ve never seen this? This is all we EVER seem to see. This is the Harley that we live with, this is why YOU are looking after him at the moment and not me”.
And I stormed off.
I can remember driving back home that morning, sitting in the car crying my eyes out and literally yelling at God demanding some sort of answers, and I got them. Oh crikey I got them!
Immediately, I was given perfect clarity and it all started to dawn on me: THIS was high-functioning autism.(HFA). I’d read about this. My Mum had mentioned it to me in passing several times (and I was beginning to understand why she had). So I set about researching HF autism and Aspergers Syndrome. And one of the very few things that I’d remembered reading was that children who are high functioning usually keep it together in places that they don’t feel comfortable but the wheels fall off big time once they arrive home again. And I KNEW that this was exactly what we were seeing with our Harley.
Over the following few weeks I rang many numbers from speech pathologists through to physiotherapists and was always told the exact same thing. “Well….he is too old for our early intervention program but if you think it would be of benefit, you might want to find your own speechie and OT”. And every time I would slam the phone down in disgust and have a big old tantrum of my own.
But conversely, Lucas was diagnosed at only 3 and spent 18 months in a wonderful E.I. program containing a speech pathologist, 2 early childhood teachers, a physiotherapist, an occupational therapist and a psychologist. And wow-oh-wow - the difference in everything from social skills through to speech and impulse control is so bleeding obvious between the boys. I can’t help but be a little sad for Harley. And of course I have no concrete proof, but I can’t help but think that if I had have followed my mother’s instincts and demanded that Harley be seen earlier despite being told that I was paranoid over nothing, then maybe Harley wouldn’t have missed out on so many vital services.
But I’m not going to live in regret. I am thrilled with the progress that he has made over the last 5 years. I am happy that I understand my child more and more with every passing day and I know that he is an amazing kid with an amazing future. I figured out that there’s no point in torturing myself with woulda shoulda couldas.
But let me finish by saying this: If you have any concerns about your child’s development and maybe everyone around you is telling you what they think you want to hear but you still have doubts: Smile at them and thank them, but follow your heart because a mother is rarely wrong about her children.