As we come to the end of the annual Autism Awareness Month, I thought this was a timely post…..
2012 was a year of diagnosis bombshells. First autism, then 2q23.1 Microdeletion Syndrome (recently known as MAND) and then epilepsy. It seemed just as we got our head around one condition, we were hit with the next.
At that time I remember researching everything I could to give me some insight into what Isla’s future held. It was a confusing and frightening time figuring out what it all meant.
Now at nine years old, Isla has grown into her autism diagnosis. The older she has got the more stereotypical her traits have become. Autism has now been scientifically linked to the gene she is missing (MBD5). Knowing the reason why doesn’t change anything, but does help with acceptance and understanding the diagnosis.
You may have heard the saying “if you’ve met one person with autism, you’ve met one person with autism” (Dr Stephen Shore). Not everyone with autism is a genius or has a gift with mathematics, music or art. Some with autism have an intellectual disability, some do not. Some can speak, some cannot. There is wide variation in the type and severity of symptoms people may experience.
The following are my insights into our world of autism:-
1. We celebrate the most bizarre developmental milestones
Drawing on the walls or table, cracking every egg in the fridge and telling white lies are all things that are not encouraged but quietly celebrated in our autism house. These things show initiative, creativity and some form of motor skill or social development that doesn’t come easily for Isla.
2. Advocating for your child is exhausting
Being an autism parent I feel like I am never doing enough. Navigating the world of special needs is not straight forward. I have to fight for most things like funding, education and disability acceptance. I need to be proactive and outspoken.
I have learnt more from parents with experience than the medical professionals. However, talking to other parents can be a blessing or a curse. Having support and understanding is invaluable but differing views has sometimes caused me to second guess decisions I have made.
3. It’s important to make time for yourself and other children
Autism is all consuming. It’s being stuck in the toddler years for an extended period of time. It’s giving extra help with basic skills that come naturally to most. It never can be left unattended.
BUT the emotional drain can be just as hard as the physical one.
It’s the worry of living in the real world when leaving school. It’s the extra burden that will placed on siblings when you are no longer around. It’s the nagging feeling that you are never doing enough. It is exhausting and it never leaves you…not for a day.
Seeking out respite has been imperative. Our other children are equally deserving of our time. Also having time away with my husband or friends is important to recharge my batteries, gain perspective and to remember who I am without my children.
4. You cannot rush development
Early intervention and therapies all have their place. Although sometimes you cannot ‘make’ development happen no matter how hard you try. You need a lot of patience. Progress seems to happen when you are least expecting it. Being consistent and repetitive is hard work and sometimes you can only do the best you can do.
5. Autism is an invisible disability….at first glance
Even without the physical attributes of a chromosome disorder you can see autism in Isla. The way she holds her body, facial expressions, her tensing and her noisy stimming. With her honest but inappropriate comments and quirky conversations. Her different and sometimes difficult behaviours can make you feel like you are on show when out in public. You never get used to the curious looks and occasional glares and judgements.
Our daughter Isla has autism but she is not autism. Although I admit it is sometimes hard to differentiate. She constantly fills our lives with joy, wonder and amusement. We are blessed with a child who is innocent, curious and observant. Her observations of the world are unique. There are days of frustration and exhaustion but you can never be angry with our sweet girl. She never sees the bad in anything or anyone.