When we had our first child, we knew there was something different about her. We tried a lot of things, saw a lot of professionals and got a lot of useless advice, but nothing really helped. Eventually we decided to just accept her as having a disability of some kind, and I say disability in a meaningful way, because her day-to-day life was affected negatively (as was ours). We made changes in our behaviour to accommodate hers, used a variety of tools to help her cope with life, started homeschooling, and fumbled our way through the first 15 years of her life.
She has three younger sisters – two of whom were ‘full on’ and had what we assumed was ADHD, but as we were homeschooling them, we coped with that. We also had two boys – the eldest was diagnosed with Autism at age 2¾, and while researching Autism, I found a lot of similarities between my oldest daughter, and descriptions of Asperger’s.
I finally had an answer to why she was so different, why life was so hard for her, and why all the advice we’d been given in the past just didn’t work for her. I then started doing more research (as I do) and it occurred to me that maybe she wasn’t the only one of my girls to have Asperger’s. We ended up with a diagnosis for three of my four daughters and it really felt like my world fell apart. Behaviours that we were hoping they would ‘grow out of’ or we could change if only we found the magic parenting key, we now knew to be part of their Autism. We knew that they each needed more help than we’d been giving them, and yet I felt unable to provide that, given that my son needed so much more.
Others around me didn’t understand what we were going through mentally and physically, and I felt terribly alone. I managed to attend a local Autism Support Group, and finally found other parents who KNEW, and I started to feel less alone. These parents were also dealing with the grief of an ASD diagnosis, struggling daily with their children who had behaviours that seemed bizarre and often made life difficult for the children and their parents. By then I had already been reading books about biomedical treatments, and I was looking forward to hearing from others what they had tried and could recommend.
Unfortunately, I was disappointed. The prevailing attitude was that you had to accept that this is how your children would be forever, that no therapy or treatment would make any difference and the sooner you accepted that and moved on, the better. When I tried to discuss books I had read or treatments I had researched, I was told I was wasting my time. I once again felt alone, even in the middle of a ‘support’ group.
One thing I have learned in life is that I don’t have the time or emotional stamina, to deal with a huge amount of negativity. I want to surround myself with positive people who will help me and support me, not naysayers who drag me down. Thankfully, I managed to find an online support group which was all about helping our ASD children with their many health challenges. Here I found other parents who were changing their children’s diet, and using a biomedical approach alongside mainstream therapies, in order to help their children. I was inspired by parents who had been doing the hard work for longer than I had, and even found a couple of local parents. I was no longer alone.
These days I am in a number of online support groups, and the things I have learned from other parents on the same journey are amazing. When new treatments or therapies start snowballing through the ASD world, I have friends who send me information, add me to groups so I can learn more, and sometimes even send me new things to try. My friends are all over the world, but we are all united by our aim of improving our children’s lives.
I occasionally manage to meet like-minded parents in my town, but the highlight of my social calendar is attending conferences (when I can afford to). Often these are the only times I can catch up with my best friends – those who are working hard in the trenches right alongside me. We hug, laugh and sometimes cry, and share our latest successes and failures. We swap notes on supplements, doctors, new foods, the best places to go for various hard to find items, and update each other on our children. Most of all, we are there for each other – to listen, to support, to care and comfort when needed.
We meet ‘new’ parents who are starting out on the journey, just like we did, and we help them just like we were helped by those who came before us. If you haven’t already found your support network, please do contact me and I’d be more than happy to connect. 🙂