I first heard the word Autism in our pediatricians office when we went with our son who was 3 at the time. Ever since he was labeled with this word I have made it my 'special interest' and learned all I can on the subject. When our son was initially diagnosed with Autism I was in denial and shock and wanted everything I could to change this and help him to not be 'autistic'. A lot has changed since then.
We tried ABA Therapy. We tried Sonrise Floortime. I went to every program offered to us. I immersed myself in the world of Autism. I helped start up a play group. I created a support group. I started a facebook page for parents with a child on the spectrum. I then worked for CCS Disability Action, became the chairperson for Autism NZ Manawatu, became a support parent for Parent 2 Parent and then started facilitating groups for parents of children with disabilities. Meanwhile I studied Professional Counselling and had three more children. I am the instrumental griever, the one who expresses my grief through doing something! Can you tell? :)
So when I say my special interest is Autism, what I mean is, that I get it. I understand it comes in all shapes and sizes, big, small, black, white, multicoloured and beautifully and uniquely different. One size does not fit all. I understand that children can be autistic and incredibly intelligent little engineers who know everything there is to know about trains or fast cars and yet have trouble making friends and generally struggle in social situations. While other beautiful autistic children may be non-verbal and have a million and one allergies or challenging behaviours. I know the incredible stress that parents feel A-LOT-OF-THE-TIME and the strain on relationships when you are constantly feeling exhausted with battling the system and just downright overwhelmed!
The other thing I am very aware of is the constant struggle that parents face when trying to make sure their child is taken care of in the schooling system. Some autistic children are too 'high functioning' to receive funding to help pay for a teacher aide and so the extra support required falls on the school and the class room teacher. This can be highly stressful for parents AND teachers who often battle against each other to the point where our unique children are taken from school to school and even home schooled. When, all we need is, TO BE ON THE SAME PAGE!
From our sons diagnosis at age 3 to age 5 was incredibly hard for me as a parent who just wanted answers and wanted them NOW! From age 5-8 was harder again because we were trying to fit a square peg in a round hole. I eventually got 'it' when our colourful child was about age 9. This is when I began to accept that he is our beautiful quirky square peg who absolutely WILL NOT fit in a round hole. Even though I have always loved him more than life itself, I guess there was always a part of me who was trying to make him 'fit' with a normal society. Now he is almost 12 and I am at peace with who he is, where he is and nothing phases me or him for that matter! And boy is it a great feeling. :)
Just like our incredible children who have Autism, every journey is different, every parent grieves in different ways, and no way is right or wrong. Also it may take you 9 years to fully understand and accept your quirky or challenging child or it may take you longer, take it in your stride. Talk with other parents who walk a similar path. Trust me,
feeling supported will make all the difference.
So yes, Autism will always be a special interest of mine. Because a special person with Autism has my heart.