If I had a crystal ball 13 years ago, would I have changed the decisions I made?
Let’s start at the beginning.
In 2004, I met my soulmate on an online dating site. We clicked instantly, were married two years later, and things were great. In December 2008, our daughter Allegra was born she made our life complete.
Not even a week later, my husband was diagnosed with an aggressive form of non Hodgkin’s lymphoma. It was incredibly stressful and emotional, but he was in remission within six months. We all took a deep breath.
In October 2011 Allegra was diagnosed with moderate autism with a severe language delay. At the time, I didn’t know much about autism, all I knew is I had to help my daughter, so we started early intervention.
We managed, we got by, and we were happy.
In April of 2014, we were elated to find out we were pregnant with our second child – a boy – something we thought would never be possible due to the chemotherapy used to treat my husband’s cancer.
It should have been the happiest year of my life, and it ended up being one of my hardest. I was 34 weeks pregnant when my world was tipped upside down.
In November of that year, my husband passed away suddenly due to a heart condition; something the doctors say may have been caused by the cancer treatment he had received years prior. I felt completely lost.
My baby Harrison was about to enter a very different life – one that felt like a nightmare.
To be honest I wasn’t sure if I should post about this today. It should have been our 11th year wedding anniversary, but one piece of the puzzle is missing. I am never sure whether I should continue to celebrate/remember the good times etc. . . Then I realise I probably wouldn’t be sharing our autism journey if I had never met this man 13 years ago or if he didn’t pass away almost 3 years ago. I still have his surname, I am raising his kids without him and I am trying to keep his legacy going. Not easy some days to be honest. Moving on is easier said than done. When Allegra still misses him in her own special way and Harrison doesn’t realise what he is missing as he never got the chance to meet him. . . So I think it is appropriate to post this today. Remembering the good days! . . #soloparenting #widowlife #legacy #bittersweetmemories #rememberingthegoodtimes
I was angry with the world for a long time, even though there was so much to be positive about. Becoming a widow at the age of 33 was definitely not in my plans, but destiny placed me in this position, and it has taken almost three years since my husband passing away to realise that sometimes, I just need to breathe, trust, let go, and see what happens.
Speaking of destiny…
If I wasn’t already on the autism journey with my daughter, my son may have gone undiagnosed. It was only because I knew some of the red flags for autism from Allegra’s journey that made me listen to my gut and get him assessed and diagnosed early.
Firstly, he was always a hard baby to settle, the slightest bit of noise and he was awake – just like his sister.
He was a happy baby and was meeting all his developmental milestones, until at 12 months of age when his speech was delayed – his first word was at 18 months old.
I paid close attention to Harrison’s speech as the months passed and I knew something wasn’t right. Instead of initiating speech he was just repeating phrases or words he had picked up from his iPad, TV, or from adults talking to him.
His speech was very scripted, and fit perfectly into my own research about echolalia, compelling me to get an opinion from a speech therapist who believed he too was showing signs of autism and needed to be assessed.
By then, almost day by day, the red flags started to appear:
- Not accepting change well
- Routine driven
- Lining and stacking things up (in his case spice containers)
- Poor social skills
- Very unsettled around new people
- Aggressive behaviour
- Avoiding sensory experiences (getting dressed, cold food, bubble baths, etc)
- Picky eating
- Limited play skills
The best way I can describe Harrison’s echolalia is this: If we’re looking at a truck on the road, and I say to him “say bye bye truck”, while most two-year-olds would say “bye bye” or “bye bye truck”, Harrison will say “say bye bye truck” and repeat me word for word.
In kids with autism, echolalia of speech just becomes another repetitive behaviour. We’re yet to get stuck into Harrison’s speech therapy, but it’s something we’re working on every day.
Listen: Is Atypical an accurate depiction of autism? (Post continues…)
All people on the spectrum are different. There are so many red flags for autism, of which I have only mentioned a few. But my biggest piece of advice is if something concerns you, or doesn’t seem right, just follow your gut. Why? Because your gut may be right.
Having a child assessed for autism isn’t a walk in the park and is expensive, but if your child is diagnosed the doors that open up after a diagnosis can benefit your child in the long run.
Early intervention is the key to helping kids with autism.
I know this sounds easier said than done, true, I have spent many nights trying to work out what I am going to do next. I always stress about things way too far in advance, it’s just how I have done things for most of my life.
But when you’re a single mum, and are raising two kids with autism, it is absolutely impossible to plan too many years in advance let alone months in advance, that is just how living with autism is.
Our life is five steps forward and three steps back, and yes, I ask myself “If I had a crystal ball 13 years ago, would I have changed the decisions I made?” all the time.
But despite everything I’ve been through, despite being a single mum of two autistic children, I wouldn’t change one single thing.