Feeling helpless is one of the worst feelings in the world. I am naturally compelled to get things done, sort things out, make things work and generally ensure no loose threads are left hanging, but our journey with our daughter and suspected Asperger’s is something I have no power to change. I cannot speed up the process, I cannot amend the severe lack of awareness/understanding/funding that means that Asperger’s children, in my opinion, seem to be ‘invisible’.
Our journey began soon after our daughter was born and she just wouldn’t smile for quite a while… but it is only in hindsight that we can say that because unfortunately the dots were never joined before last year (by us and our daughter’s BSBA who she has been seeing since May). The lack of smiles was not added to the other info about our little one; the lack of babbling, the complex speech issues (where we were asked whether we ever read to her – ‘Yes, every day and night since birth’ we replied with shocked expressions); the night-time behavioural issues (we were actually asked if we had thought about introducing a bedtime routine – we asked them if they meant different to the one we had introduced the day we bought her back from the hospital!); lots of complaints of tummy aches and headaches; clumsiness resulting in trips/falls/sports injuries; further behavioural problems where they referred us to a psychologist (who again spoke about routines and dealing with ‘emotional’ children).
Add to this the constant nagging feelings of ‘difference’ we have had about our daughter in relation to her peers, why her emotions were so extreme, why she hadn’t seemed to grow out of tantrums and why she prefers not to speak on the phone, the school mentioning her hand-writing skills and thought that she was not concentrating/sitting still/focusing and bingo…. suddenly it all slots in to place… well it may do once the wait for a formal diagnosis is over.
Yes, there is some support out there and networks available once you have ‘The Diagnosis’ but that is many, many months away – more on this is a future blog. In the interim, we are left hanging, wondering if we are doing all we can, what behaviours we ignore, what we should not tolerate, who to turn to, which charities may help, what is appropriate for our child etc.
So, we try our best, we read all we can, we ‘interpret’ the world for her, we pre-empt new situations, we probably cajole way too much, we walk on egg shells and we are starting to increase the circle of people, charities and organisations we hope can help. Please get in touch if you are going through this journey too…