As I’ve been preparing for my autism presentations (today is the day!), I’ve revisited the early days of my son’s diagnoses.
This process has helped me to identify what I wished I had have known in those early days so I can share this with others today.
It’s been a timely exercise for me in a number of other ways too.
It has illustrated just how far we have come over the years, at a time when we are feeling the pressure of the impending challenge of high school.
It has reassured me that we do actually know what we are doing. Which is just the boost I need as we hit the uncertainties of the teenage years.
And it has highlighted just how far how my mindset and belief system have shifted over the years, since receiving our first diagnosis for Gilbert in June 2004.
In the beginning, I could only see the negatives. I could only see the deficits which highlighted in sharp relief all the things we needed to change in our boy.
All those things that made up his diagnosis.
Through the inital haze of grief and shock I was not open to the possibility that my son was enough as he was.
I could not see that his conditions didn’t take anything away from him.
In fact, it took me some time to realise that his diagnoses have actually given him a focus, an intelligence and a determination that he may not have otherwise possessed.
His diagnoses are an integral part of him. He would not be Gilbert without them.
Thinking back over the last 12 years, I’ve come to believe many things and I thought it would be fitting to share today the 10 things I believe as an autism parent.
I believe special needs parents are no more special or any stronger than other parents. We are all human beings, doing the best we can and loving our kids with every ounce of our beings. Raising a child with additional needs doesn’t change that.
I believe we need to build a community around us (even if we don’t think we do). We all need to feel a sense of belonging as well as feeling connected and valued. We shouldn’t feel isolated and alone – like everyone, we need access to help, support and understanding.
I believe we need to cling to our own identities of self. Yes, we are parents. Yes, we may be parents to a child with special needs. But we are still our own person. We are entitled to our own lives and interests and escape. And we shouldn’t feel guilty about wanting that escape or for taking time out.
While we’re talking guilt, I believe we need to shed the guilt. All of it. Special needs parents are masters of guilt. We feel guilty about the diagnosis, about not doing enough for our kids, for not being able to make the right decision, for not being able to spend enough time with our partners or with our other children. STOP THE GUILT.
I believe we are equals to medical specialists, therapists, teachers and education professionals when it comes to planning for our children’s futures. We know our children best. Specialists are experts in their field and their advice must be considered. But as parents, we know how the diagnosis uniquely affects our child and have a vital role to play in planning for their needs.
I believe being a special needs parent, regardless of the diagnosis, is a tough gig. Stress is our shadow. We’re either stressed because of what we ARE dealing with or stressed because of what we COULD be dealing with. We’re always steeling ourselves for what comes next, preparing ourselves to manage and mitigate the next meltdown, upset or issue. It can be an exhausting way to live and we need to acknowledge this.
I believe we need to be honest with ourselves and not deny nor be ashamed of these thoughts and feelings. They are natural and we all experience them from time to time. But we do need to acknowledge them – don’t just ignore them. We need to be able to move on before they begin to fester and make life even harder for us.
I believe we need to listen to our children and advocate FOR them. We should not assume we know best or that we have all the answers. We should always try our best to seek their views on issues that are important to their daily lives.
I believe acknowledging the unique challenges of being a special needs parent doesn’t make us terrible parents or means we are betraying our children. Facing this reality head on makes us better parents and provides the self-awareness to seek help when we feel we need it.
I believe we should never be afraid to ask for help. Most people are happy to help if they can – in fact, it makes people feel good to know they are needed. We should not second guess what the response will be or think that we are failing if we can’t do everything on our own – we should seek help if we truly need it.
What 10 things do you believe?