Heartbreak and hope – receiving an Autism Spectrum Disorder diagnosis for your child.
It’s been just over one year since we got an Autism Spectrum Disorder diagnosis for our three year old son Dane. When we got the diagnosis I remember searching for other family’s stories about being in a similar situation. I gained comfort from those stories. Now I feel it’s only fair that I share a little bit about our story. I hope that it helps other families.
I’d like to say we welcomed Dane into the world with nothing but joy, love and hope. Unfortunately that was not the case. Let me explain why.
My Dad visited me in hospital when Dane was 1 day old. My Dad left my hospital room to go to the emergency department. He never left the hospital, he passed away there 2 weeks later. I knew my Dad had been unwell for some time, but I always chose to look on the bright side. I thought he’d be able to fight forever. That day he visited us in hospital I knew things were not good. I can remember saying to my sister (pardon the language) when he and Mum left the room – ‘he’s f*cked’. After Dad passed away I had no choice but to get on with things. I had a newborn and another little person not even two years old to look after. I just sucked it up. I didn’t really grieve until two years later when things really turned to $hit, but that’s another blog post.
Dane was never a well baby, he continually vomited and picked up every bug going around. But he was a delightful baby, always smiling and for the most part very happy. He was a little ray of sunshine when times were dark. At 9 months old he tried the tiniest bit of peanut butter, that did not go well. Turns out he has a peanut, nut, milk and egg allergy. He was never a great sleeper, he woke constantly and snored loudly so we visited an ENT. Turns out he needed his tonsils and adenoids out, and grommets put in. I believe this procedure had a major impact on Dane and his future. Without going into too much detail it was an extremely traumatic experience for him, and after that he wasn’t quite the same. We thought after getting the surgery his language and communication skills would improve. That is exactly what happened to his older sister. She was three when she had the procedure and from there she blossomed. Was not the case for Dane. He did stop snoring and didn’t get sick as often as before, so that was something to be thankful for. But his language, communication and social skills didn’t really improve. Still we didn’t think anything was wrong, we thought he was just a late bloomer.
When Dane was 18 months old we went back to the paediatrician for a check on his allergies. We’d been in the office 15 minutes and the paediatrician indicated that something was not right. He said Dane was 12 months behind in terms of speech and he was very ‘busy’. He mentioned possible Autism Spectrum Disorder, Global Development Delay and ADHD. I was crushed. After balling my eyes out to my husband and mother, I then spoke to a dear friend who just happened to be the founder of a first class early intervention centre being the Fit Kidz Foundation. I can’t tell you how much she helped me, and to this day I get teary eyed thinking about it. Words can’t express my gratitude to that lady. I can remember her saying ‘I got this’. Bless her. So, from then on it was all systems go. We had Dane assessed by a specialist psychologist from the early intervention centre. She agreed there appeared to be cause for concern.
We started with speech, OT and group early intervention. About 5 months later we had a formal ASD assessment done which came back inconclusive. It was a ‘probably’ but not a ‘definitely’. Remember at this time Dane was only just two years old. We continued with his therapies. Just before his third birthday he was diagnosed with level 3 Autism Spectrum Disorder by his paediatrician. People kept telling us, ‘oh but now you have the diagnosis you’ll get funding’. All true but still, to see it written on paper was pretty heartbreaking. It was a tough time, naturally your mind thinks the worst. I felt pretty lost. I put on a brave face but deep down I struggled to see the light. I was worried for Dane, and what kind of future he would have? I was worried for his older sister Millie, what would this mean for her? I was worried for my husband, I knew he was absolutely devastated. Funnily enough I didn’t really think about what it meant to me personally. I guess I was too concerned about everyone else – such a mother thing to do right?
My support network.
As fate would have it, I was already working with children and teenagers with Autism and other additional needs. All whom had varying challenges and capabilities. Little did I know that this additional needs community that I was already a part of, would help pave a positive future for Dane. I gained great support from parents with whom I was comfortable enough to confide in. They were and still are a wonderful support for me, in addition to my long term girlfriends. From chats about their own journeys, to templates on how to provide evidence for your NDIS application – this wonderful Spectrum Fitness and Wellbeing community was a saviour. I can’t stress enough how important it is to talk, and to accept help and guidance. I’m the kind of person who doesn’t like receiving let alone asking for help. But in this case I assure you, talking about your situation and being open to help and guidance is a positive thing.
Hope and progress.
Some people may think I’m crazy, but I’m determined to try a variety of different things to help Dane become his best self. This is a list of things we’ve tried during the past year –
- Speech therapy
- Occupational therapy
- Group early intervention
- Music therapy
- Genetic testing
- Spiritual healing
- Gluten free diet
- Dairy free diet
- RPHA elimination diet
- Biomedical supplements
- Structured exercise
Here is a breakdown of some positive developments we’ve seen in Dane in the past year –
August 2017 >>>August 2018
- Rarely slept through the night > sleeps through the night about 95% of the time.
- Showed little interest in other people > is extremely social and wants to engage with everyone.
- Was only interested in how a toy worked > uses toys for their intended purpose.
- Mainly used singular words or physical gestures > uses short sentences.
- Rarely understood requests or followed instructions > understands about 95% of our requests and is able to follow simple instructions.
- Was a bit aloof > is extremely affectionate and loving.
- Would run away at any opportunity and cross roads without looking > will stop running if I tell him to, asks to hold hands to cross the road.
- Struggled to take turns > is developing turn taking skills.
- Could engage in an activity for about 2-3 minutes > has the ability to engage in an activity for up to 30 minutes.
- Wouldn’t eat vegetables and didn’t like trying new foods > eats about 6 different vegetables and is open to trying new foods.
- Unable to recognise or express his feelings >recognises his feelings and uses words to express his wants and needs.
- Diagnosed level 3 ASD > diagnosed level 2 ASD.
We’ve made a lot of positive progress, but there is still work to be done.
As I mentioned earlier Dane was always a sick baby. Perhaps that was the very first sign. I do believe that there is a gut / brain connection, and that his gut and immunity can be improved. In the future I plan to further explore nutrition and supplements to try and heal his gut and improve his immunity. In the meantime we’ll continue with all his interventions, and will keep supporting him along his journey.
Key points for YOU to remember, as you begin your journey.
- Know that every parent’s journey is different, I never say to someone ‘I know how you feel’ because I don’t.
- Accept help and guidance from others, don’t ever be afraid to ask for support.
- If someone says something that upsets you, try and let it go. I’ve found there are a lot of well meaning people out there who just don’t know what to say.
- Accept that some days will be really, really tough.
- Know that some days will be magical.
- Believe that knowledge is power.
- Know that self care for yourself is crucial.
- Celebrate the wins. Just because it may seem small and insignificant to someone else, doesn’t mean it’s not a huge achievement for your child.
- Don’t look too far into the future, focus on the here and now.
- Know that your child loves you more than anything, even if they can’t say the words.
- Never, ever give up hope that your child can and will become their best self.
Good luck on your journey, you got this.
Learn about the amazing Fit Kidz Foundation, a first class early intervention centre for children with Autism and other developmental delays.