We’re rapidly approaching the first anniversary of my Little Mate’s diagnosis. Before autism was a part of my family, I didn’t understand why anyone would remember the date of an appointment like that. Now I know that it is burned into my memory along with my reactions to it. It may sound overly dramatic, but it was a day that changed our lives forever.
There was a part of me that always knew something was amiss with our lad, but it wasn’t until he was two years old and still not speaking that we started to really think about it. As the third child it was easy to put his lack of verbal skills down to not needing to talk (his brother and sister did that for him) and we could find lots of reasons for other niggly issues as well.
I was convinced our son had hearing loss. That would be it! Grommets and he’d be right as rain. But the hearing tests came back perfectly normal.
In the space of a couple of months other behaviors began surfacing as well. Meltdowns, particularly during the night. He noticeably stopped making eye contact with other people. Where once he had coped fine in group situations, he was clingy and distressed. Where he had been keeping pace with his peers in many areas, suddenly he was so far behind them developmentally.
And so it began. The referral to a Paediatrician and from there a specialist psychologist.
The day of his assessment I expected to be told he was possibly at the extremely high functioning end of the spectrum. Possibly. Without even waiting to formalize the report, I was told that very day that he certainly had autism, and an intellectual disability as well. Any parent who has heard those words doesn’t need to be told how it affected me. I am so grateful my Mum was there with me. It was less of a shock to my husband who had suspected for a while, where I’d been in firm denial.
A year on my son’s autistic behaviours are far more obvious than they were then. Mostly I think because the gap between him and his peers has continued to widen so much, and because I now see them for what they are rather than looking for other reasons and a way to escape the truth.
In the past year I have been blessed to have amazing people to talk to about our journey. One of the reasons we created this space was in the hope that other parents need not feel alone when they hear those words. And the good news? My son is still my son. He is an amazing, gentle little soul. He has more words than he did and is better at conveying his needs both verbally and non verbally. It took me a long time to fully accept his diagnosis, and there are still days I catch myself thinking ‘when it gets better’. But the thing is it DOES get better. With understanding, with therapy, with so much love.
Whilst my boy will have autism for his whole life, he will also grow and develop and change and be loved.
What led you to seek a diagnosis? And what would you tell a parent with a newly diagnosed child?
{ 9 comments… read them below or add one }
Gosh , my heart is breaking, of course he’s not a write off Alana, and to Kate, well done for seeing the beauty and positives in your little boy. My son is now 18, so I speak from a different place. To anewly diagnosed family (because the whole family receives the diagnosis not just the child) I would say, just breath. The little person you adore is exactly the same special person as they were before the fateful words were spoken. I would say choose yopur battles, save your energy, form a network like a force-field amongst family and friends to provide respite and to give encouragement and support, and to protect ypou and your little one from the nastiness of this world. I would say that all the “standards” and “research” and “averages” and “statistics” are irrewlevant because they Never Met Your Child. Your child is wonderful and unique and has tapped potential that would blow the doctors minds! You’ve been handed the most wonderful treasure map, so set of on your journey with joy and adventure. Trust that you are exactly the Mummy and Daddy that this little person needs to get through xxxx
Wise and loving words, thankyou so much Lisa. – Kate
I can’t believe how many typo’s I made! I have bandaids on three fingers .. honest!!!
after years of living with this “aspergers”, I can honesty say I have met many people who coulda/shoulda/woulda been diagnosed. I have met kids who don’t seem even sort of on the spectrum yet they have a diagnosis. The fact is we all slip and slide somewhere along the spectrum and it is only an arbitrary line that determines who is “disabled” and who is just quirky.
Our diagnosis took 14 yrs to be completed, yet I knew from age 3 that something was different. Not wrong, not amiss, but just different. Now.. I wouldn’t change my gorgeous big boy for anything,. he is wonderful, sensitive, hilarious and awesome.!!!
I would say to all parents of newly diagnosed children — you are your child’s top advocate… do it to the max, don’t take no for an answer, push on and do the best you can do. When you feel like a failure, just remember the love you felt when you first held your child after birth. That love will lift you up and you will carry on.
Beautiful words, thankyou Rhonda. – Kate
Yep in those words!
This is very close to what happened with our little guy. We noticed a lot of things around the 2 yr mark. He started losing words and replaced them with a gut wrenching noise that he would do almost all day. Eeeee eeeee was all we heard. And it was loud! He changed so quickly it seemed from a normal developing child to a shell of what he once was. Very scary. He started to seem as if he diddnt trust me. If he hurt himself he would run away from me instead of to me, bath time that we once enjoyed together turned into fear of me drowning him. It was odd. No one listened, family self diagnosed and made me so mad. I just wanted to wrap my arms around him and run away from this truth. But it was staring us in the face it was the elephant In the room. Finally he was diagnosed with autism at 2/5 by a paed who I wanted to kill for saying those words with such a lack of emotion. It felt like a sentence and he diddnt get it. ” he’s not a right off” he said. Today my gorgeous boy is three and doing well and learning to talk through a brilliant speechy. I’m still as proud as I am scared. I still almost suffocate on the thought of it but we are doing ok . We are moving in the right direction and that is all we can do. I hope he will be alright. I will be here to hold his timid hand through it all. Because he is MY son, MY angel and he is loved beyond words.
Wow. He’s not a write off? Seriously?! That is horrible! Of COURSE he isn’t! He is your son and he is loved!