When you have a child on the spectrum your whole perspective of people and the world around you changes.
I can’t speak for every parent of a child with ASD but I can speak for me and I know I have been changed permanently and I would like to think it is for the better.
When I stop and think about my son and I think about long-term how things will play out I start to feel like I need to ‘do more’ Not just for my son, but for the community I live in, people who also have loved ones on the spectrum, for the neighbors and friends, for not just my country but humanity. I want to help, because I know all too well how scary and isolating it is to be in a league of my own.
Yes, Autism effects hundreds of thousands of people, 1 in 68 children and even more staggering 1 in 42 boys.
For as many people in the community I live in that share in the experience of having a child with Autism it always amazes me how easy it is to fall into a habit of keeping to yourself, in fear of inconveniencing others, or worse, not being understood, accepted or just plain too much effort to want to be around.
I know, this sounds horrible, but horrible or not, it is a truth.
The reality is many people fear difference.
Many people are uncomfortable with any straying from ‘normal’. They don’t want to see the meltdowns, the stressful face-offs when you are trying to get through a moment or experience the stimming (Self-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders.) it’s just too odd, too uncomfortable. It’s as though Autism is contagious and no one wants to catch it.
I’ve always tried to be positive, to make the most of things and bravely face my life as it is and make the very most of what I have been blessed with but at times I must say I am not only disappointed but disheartened with the lack of thoughtfulness and support we are given from people who call us friends and family.
I often wonder if it is because its too much effort to be supportive or maybe I just don’t warrant it.
I find it hard to believe that people who are close to my family do not see how hard we work to keep things going, to raise our family, to advocate for our children and make ends meet.
It is not lost on me that the last trip I took with my partner was almost 8 long years ago and that we almost always go out without one another. It is so rare that we go out of the house without the kids that friends have stopped offer the invite.
During the tough times, as our relationship faltered, it was also left for us to piece it back together ourselves, there was no one to help us find time to work on things, we either did it or let things go to the wayside.
So we worked harder.
I’m not writing this to complain, but merely to give you all a open and honest view of how it is sometimes in a ASD family.
Sometimes it is ugly. It is raw and difficult.
Sometimes it feels like no one understands. Sometimes it feels like you are alone. And a lot of times you are.
Despite this, search for the light.
Look deep within yourself and know your love and determination will eventually prevail.
Take deep breaths. Take lots of deep breaths.
Remember that it will get better.
Celebrate the small things.
The smiles and giggles of being silly together. The hug or kind word your child may share. The pat on the back of someone who sees how hard you work.
Be kind to others. No one truly has a perfect life. We all have dragons to slay, we all have obstacles to overcome and we all need to know our effort is acknowledged, even if we struggle to stay afloat.
Help where you can.
It is a reoccurring theme that everyone feels “they don’t have time” for things but sometimes helping is as easy as a quick comment on facebook saying “good job” or “I understand”.
We don’t always get to choose what gifts we are given in life…but they are all gifts. Treat them as such.
And remember, gifts are easily shared.