As April is would Autism awareness month, I though that i would share our story. It may be a long blog, however i feel it is important to share
As a Baby we knew there were some ‘red flags’ with Anthony, he was an extremely difficult baby. He would scream from sun up to sun down especially when it came to feeding and settling him for sleep. He was so unhappy that he wasn’t reaching his milestones.
The Dr’s put the complications down to colic and reflux and sent us home, however I knew there was something more! Once he started missing milestones I began to get worried. he hardly smiled, he wouldn’t roll, crawl or weight bare, he hardly drank bottles and he would get worked up if we held him or touched his hands.
Although the signs were there and I knew the diagnosis before it was given, the Dr’s, Midwives and health Nurses would not listen to me, infact they told me “you’re just a paranoid new mum, stop comparing your twins to each other”.
My other Son Michael was such an easy Baby, he never fussed over feeds, he slept with no problems and hit his milestones way before he was supposed to. He was always happy and content unless of course you were late with his feed or out of his sight.
While I was busy fighting Dr’s and specialist for answers with Anthony and doing My own research on ways to help him with sensory play and motor skills, I didn’t notice that Michael too had ‘red flags’. Michael would tip toe walk, hand flap, spin in circles and always played on his own without wanting us to play with him, he was happy on his own.
We had no idea that Michael’s behavior was a ‘problem’. That was until at 18months old, we finally got to see an Occupational therapist and Speech therapist to see Our Boy’s and give us an opinion on what they though might be going on for Anthony.
Fast forward to 1 year since the first assessment and both Anthony and Michael received their diagnosis of Autism. I felt relieved to finally hear that it wasn’t all in my head but my heart broke into a million pieces because I wasn’t expecting that Both my Children would have the diagnosis
It’s been 2 years now since their formal diagnosis and the tables have turned dramatically.
Anthony has gone from being more intense and not being able to speak, to being the more easy going child who doesn’t know when to stop talking. Michael has become the more intense child who needs more care and support just to get through the day.
So what does Autism look like for Anthony?
- Anthony still has difficulties with meal time, we are working on oral motor skills and food play to build up his ability to enjoy food.
- Anthony had alot of energy and needs to run around and move in order to be regulated.
- Anthony has sensitivities to bright lights and big crowds.
- Anthony likes to be wrapped up tightly in a blanket to help with regulation.
- Anthony has no awareness of danger and is unable to register pain like you and me.
- Anthony doesn’t like being messy and is quite the perfectionist.
- Anthony also has a difficult time with visual perspective
- Anthony is very smart and knowledgeable.
- Anthony is outgoing, sweet and funny.
What does Autism look like for Michael?
- Michael needs control to feel safe due to his high anxiety.
- Michael is possessive over his belongings (including Me)
- Michael flaps when excited and hits himself with having a meltdown.
- Michael needs deep pressure to regulate him, which sometimes means I have to lay on him to calm him down.
- Michael needs alot of vestibular input in order to be regulated
- Michael has zero sense of danger and often runs away when over whelmed.
- Michael is sensitive to smell and taste which makes giving him new foods a challenge
- Michael struggles to make friend’s
- Michael needs lots of reassuring and assistance during unfamiliar activities or situations in order to feel comfortable to participate. (Which mean I am the helicopter mum who is there at kindy or events joining in with him looking ridiculous just so that he is able to feel safe)
- Michael has up to 10 major meltdowns per day which last up to 1hr each time! (That’s right we have up to 10 hrs of meltdowns, per day )
- Michael needs 1 to 1 care at all times to keep him safe.
- Michael is a very smart boy.
- Michael is a gentle giant who just needs understanding and reassurance.
- Michael is sweet and funny but very reserved
As you can see both Boys are different and their Autism affects them differently which makes it challenging for all involved and feels like a constant battlefield in our home. What works for one child on the spectrum wont always work for the other. While some people on the spectrum have similar difficulties they may not respond the same way, so please don’t put a person on the spectrum in a one size fits all category.
I think most parents in our situation will agree that we are mentally exhausted 24/7. So next time you see a child having a hard time “meltdown or tantrum” in public, please don’t be rude to their parents. offer some help, or a friendly smile or even a “you got this, you’re doing great! Because that is what will get us through the day!
Elle
Our Autism Journey 