Tuesday, April 27, 2010

The First Rainbow

I might have been the first one to notice the rainbow which seemed to end in the nearby lake, but C1 (my son with autism) was by far the most excited of us all. He said the rainbow was "painted by God." This is remarkable since we don't attend church much. It was he who noticed that there were actually two rainbows (look hard and you will see it), which is a fairly common occurrence. I was so in awe of the first one, that I didn't see the second, but C1 didn't miss it.

C1 notices everything or seems to anyway. It's during these moments that I feel hope. He has had an unusual number of meltdowns lately due to some changes in routine resulting from week long guests and it became overwhelming for all of us. I feel like I'm recovering from a series of war battles.

This rainbow and his awesome perspectives about it came when I needed a sign of hope. Things outside of school are not going well. Today I called to get a new pediatrician only to find out that I'll have to call back in May to see if there is any openings for new patients. It's a concern because C1 has health issues that needed to be investigated as soon as possible. We need to see an allergist. We need to see a neurologist. And most importantly, we need to see a urologist and nephrologist. One usually needs a referral from the patient's primary care doctor to get into a specialist. I'm worried about having to wait to get a primary care doctor, so this rainbow is a small source of comfort.

This sign also comes at a time when I am realizing that there is a waiting list here in terms of any opportunities for children with autism. Online I found out about a place that provides various forms of occupational therapy, but due to the "large volume of requests," they asked that interested persons download an version of their new patient packet instead of requesting on by phone. Sigh. ( Yes, they probably have a waiting list, and further, we don't have our printer set up because C1 plays with it too much.)

Last but not least, I found out about a extended summer program for kids on the autism spectrum only to find out two weeks after inquiring about it that the program is filled to capacity. (But, I was told I can fill out paperwork for next year...) Sigh.

I thought that moving to a more urbanized area would be better for us in terms of medical care, services and opportunities. There was a limited number of opportunities in my former and much smaller hometown, but I (with the help of a good friend who also has a son on the spectrum) was able to tap into them without difficulty.

Do I need to meet the right person to help me? Do I need to keep trying? How long will it take to get everything that we need? Will C1 suffer from the delay in medical care?

These are all questions I would not be asking if we had not moved. But the reality is that we did move and now we have to start over in finding support and resources. I feel a little lost and am struggling emotionally. However, we moved to a beautiful area and I take comfort in that. I also take comfort that my son can also appreciate natural beauty, like that of a rainbow, or particularly, a rainbow over a lake...


Casdok said...

Really sorry to hear things have been difficult. But am sure you will meet the right person and i know you are a mum who will keep trying. May you have many more rainbows x

kim said...

there are so many waiting lists for us too. ppl say there is soo much out there for kids with autism to help them but since our nov diagnosis i also have found countless waiting lists and we are still waiting for some real help.