When my daughter was about 18 months, things started to happen that concerned me and made me seek professional help. Up until this point she was meeting all her developmental milestones, she even had a few words too. Her first real word was ‘tiger’ the bizarre thing is I have never heard her say that word again because just before she turned 2, she started to regress (very common with autism) and the few words she had were pretty much gone, she communicated non-verbally (gestures etc.). This was the main sign that made me seek help. There were other things too, but I didn’t notice them until after (I was so naive about autism at that stage).
I initially brought up my concerns with my maternal health nurse at the time she said wait until she is two and a half to seek help. I couldn’t wait until then it was almost like something inside of me could sense it. I decided to book in an appointment with our GP at the time, who referred us to a paediatrician. From that point after seeing him I remember him asking so many questions, I left that appointment feeling lost, confused and emotionally drained.
Having your child assessed for autism is a lengthy process. I was given two choices. To have the assessment done privately, or via the public system. I decided privately. Yes, it was expensive, but at least we didn’t have to be put on a 12-month waiting list and we would have some answers sooner.
Allegra was sent for blood tests, referred to a child psychologist and speech therapist for assessment. This was a very long process, but in the end, it gave me the answers I needed to help my daughter. Once the assessments had been done our paediatrician was able to confirm that Allegra had moderate autism with a severe language delay. I remember coming out of the appointment feeling lost. You are given a bunch of forms to fill out, but at the same time you are still coming to terms with the diagnosis. I remember our paediatrician saying the quicker you can get the forms in for funding the sooner you can start therapy etc. I was still trying to process everything and wondering what sort of future my daughter will have.
Autism was so new to me back then. We were advised to enrol her at a specific school into an early education program especially for kids with autism (the equivalent to 3 yr. old kindergarten) which would help her as she was also developmental delayed.
Which leads me to the point that early intervention is the key. Once her funding was approved therapy also started, and two days a week she attended an early education program. As hard as it was in the beginning, as Allegra suffered with separation anxiety, it was probably the best decision I made for her development. She attended the program for two years, and in the second year also attended mainstream kindergarten with a teacher’s aide.
When your child has autism, and they are getting close to primary school age, the best thing to do is to have their IQ retested. It gives you an idea of what is the best school system to choose, either mainstream or a special needs school. For Allegra we were never able to get an actual number for her IQ as she refused to do the test. For her, a special needs school setting was the best place. She is now 9 years old and loves going to school and has excelled since being there. It was finally a place where Allegra fitted in and is accepted for who she really is.
I also have a son who was diagnosed recently (August 2017). To be honest, with my son I was paranoid from the minute he was born. Sounds crazy but once you have a child with autism, there is a chance you will have another. I watched him very closely, and at one point he looked to be developing normally, or so I thought.
He was meeting all his developmental milestones. At 12 months of age, his speech was delayed (first real word at 18mths), but no signs of autism. By the time he was 2 yrs. old his speech was still not progressing as it should be, which started my concerns again. But at this point, I was only thinking it was a speech delay. Time went by and my concerns started to grow again.
I think if my daughter wasn’t on the spectrum I would not have picked up the signs with my son. He was diagnosed with moderate autism – level 2 with a language delay. His diagnosis is so new, I am still trying to work my way through the maze that autism can be. When I was going through the assessment for Harrison it almost felt like dejavu, same questions, same assessments but a completely different person. The only difference with his diagnosis was I was already living the autism life, but the diagnosis still hit me the same, which I wasn’t expecting. This year Harrison will start the same early education program as his sister did many years ago. I can only imagine the progress he will make, I am still not sure what type of school setting will suit him yet, but only time will tell.
Both my kids are unique individuals, very complex characters at times and I wouldn’t change anything about them, as autism is a big part of them both, and it makes them who they are. Autism isn’t something to fear. It helps you understand your child better.
Written by Lara Vatta
PARENTS LIKE ME.
Discussing life as a sole parent and sharing the
highs and lows that come with
raising two kids with Autism.