After the Diagnosis
We have found one of the most challenging things to deal with in relation to Jack’s autism spectrum disorder, has been trying to make our way through what sometimes seems a never ending list of specialists to see, therapies to organise, and strategies to implement.
After we had Jack’s official diagnosis confirmed, we emotionally ‘fell in a heap’ (so to speak). The months of assessment had really taken their toll and the relief at finally having an answer was quite overwhelming. Probably like many parents who have travelled the long and difficult road to diagnosis, we found ourselves thinking that once we’d got that far, the hard bit was done. But of course, it was only really beginning.
Some days we look at the ‘list of to do’s’ and it’s a case of not even knowing where to begin. Appointments and phone calls are usually challenging in themselves - trying to work around a routine so that life doesn’t get too disrupted, and trying to choose times where behaviour will be less of an issue so that you can have proper conversations with professionals (rather than fighting your way through a conversation because your child needs your attention or is yelling in the background). To then try and incorporate newly learned strategies (that are designed to assist your child) into everyday life adds another dimension to the ‘list’.
We have conceeded that one thing is for sure - being organised is absolutely vital. Although it also pays to be flexible and willing to ‘go with the flow’ if needed.
We have found that if we think too far ahead it all becomes too hard, so now we take one day at a time, do what we need to do (as best we can), and trust that eventually we will get there.
November 21st, 2007 at 7:01 am
I also learnt not to look to far ahead and do the best you can. Not always easy, but thats all you can do.
November 21st, 2007 at 3:23 pm
We too try and take one day at a time. If I dwell on future appointments and driving there and all that I get nervous. I have also learned that we can’t handle more than one doctor appointment in a week. We also cut way back on therapies. That was a hard decision but we decided most of them were adding more stress than help for Maizie and our family.
November 22nd, 2007 at 12:07 am
It can be overwhelming. You really do have to think one obstacle/appointment/ therapy at a time. I remember the night before we had to go to the out of town ‘big hospital’ to get a DX I was so nervous and I was such a witch to everyone. When it was over it was a relief but also, just the begining.
November 27th, 2007 at 8:45 pm
Stumbled across to your site. Will bookmark to keep up with you and perhaps gain some insight. We have a 4yo AS son who was dx last June. Don’t know if I can be of service but stop by sometime.