April is Autism Awareness month (hence our happy A for Autism picture) … everywhere I look there are articles about autism or programmes about autism. I guess I find it hard to believe that anyone isn’t autism aware already … maybe that’s because I live with it, it’s part of everyday life for me and my family. However, something I yearn to see even more than autism awareness is autism acceptance and understanding, more importantly, an appreciation that autism is individual to each person, even siblings.
The picture painted in the media doesn’t … and can’t … reflect the true face of autism. It’s impossible.
Sometimes folks ask me how I cope or tell me I’ve got my hands full. I don’t know any different … this is always how motherhood has been for me. The adaption to life as a mum was as much a shock for me as it is for pretty much any other mum (or dad for that matter). I cope (most of the time) because I don’t have a choice. Mr GG and I didn’t choose to be autism parents but we are … we sometimes rail against it, we sometimes wish that we weren’t having to walk this path but we are … we sometimes don’t want to be going to endless appointments but we are. I cope because I love my children and I want the best for them … I cope because this is the path that was chosen for me … I cope because of the three amazing boys who love me despite everything (and the amazing Mr GG who reassures me, supports me, leads me and props me up when I’m struggling!).
Over the past few days life in the GG HQ has been stretched to almost unbearable. The cause? A mouth ulcer. Anyone who has had an ulcer knows the horrible stinging pain that one causes … the sting of eating something salty can cause you to wince and even bring tears to the eyes. But, for someone with sensory processing disorder a mouth ulcer can be almost too much to bear. One of the Junior GGs has been afflicted … he has cried, wailed, grimaced, lashed out, had meltdowns and has, quite honestly, acted as though his world was ending. Mr GG and I have done our best … we made a call to our wonderful, patient dentist who fitted in a quick appointment between patients to confirm that it was, indeed, a mouth ulcer and nothing more serious … we have taken the risky step of applying soothing gel on the area (and emerged with all fingers intact) … we have cuddled the distraught boy … we’ve used soothing words in calm voices … we’ve cajoled a reluctant boy into eating … we’ve been firm when necessary … we’ve reassured that the ulcer will be gone in a few days.
In our journey with autism the GG family have been blessed in so many ways by working with professionals who truly went the extra mile for my boys … and I’m grateful.
Many years ago when the Junior GGs were going through pre-school there was a teacher who often spent time at the weekends researching and reading articles which would help … she listened and learned by spending time with the Junior GGs …. she took advantage of learning opportunities by tapping into their obsessions and she embraced their individuality … even now that our journey through pre-school is far behind us (for all of the Junior GGs!) Mr GG and I are grateful for all the ways this amazing lady helped both us and our boys. She may well be reading this, I don’t know, but she knows who she is … and I want to say THANK YOU MRS W … we’ll never forget and are grateful beyond expression.
Another example that stands out is the work of the staff who work within the Enhanced Provision unit in our school. Several years ago I was given the opportunity to accompany my sons on a school outing which was solely for children who accessed enhanced provision within school. I knew before I went that the EP teachers and staff were dedicated to their work but I was given a fresh insight into their work. The compassion and respect that the children were treated with has remained with me and is something I’ll never, ever forget. When the oldest of the Junior GGs was starting school Mr GG & I had to visit several schools which could provide the support he needed. Ultimately we opted to stay in the school where our son had been in pre-school … it was a frightening time but looking back, there’s no doubt we made the right decision.
However, this isn’t always the case and I’ve learned to be wary when someone greets me with enthusiasm telling me they understand “all about autism” … how can they? How can anyone? I know my children, I often don’t understand what makes them tick but I know them and have their complete trust that I will do my best for them. Sometimes Mr GG & I struggle when trying to deflect the well-meaning but ill-advised steps suggested to make the boys “fit in”. Just recently I was discussing an issue facing one of the Junior GGs and was advised it could be tackled by punishing him … the end result being that said boy would have become even more increasingly anxious and distressed … he would have been totally confused at being punished for worrying and all the work done in reassuring him would be undone.
April will soon be over but our journey with autism continues. Mr GG & I continue learning and experimenting with strategies in helping the boys … some work, some crash and burn … but we can only try … we will continue to have calm times and times when we feel drained and inadequate. We don’t have all the answers, not even a fraction of them … but we’re striving to do the best we can for the most amazing gifts that God has ever given us … and that applies equally to all of our children … ASD, aspie and NT. It’s a long road but we keep on walking (sometimes limping), learning and giving thanks.
[Anyone wondering what’s happened to the Love Dare … it’ll be back soon 🙂 … promise]