Please join me in saying hello to “One Sick Mother”. My favorite thing about this interview is how she describes her children – “perfect”!
Tell me a little about yourself and your family.
I am 41 years old and originally from Ireland. I met my Scottish husband in London and we moved to New York City in the early 90s. Our children were both born here. Joe is 10 and has High Functioning Autism. Grace is 8 and has (we think) Asperger’s Syndrome –she has been a tricky one to quantify.
You blog about your life with chronic illness. How has this impacted your parenting?
There has been both good and bad. The good: I have been home fulltime, and my children’s teachers and therapists have all reported that this has had a positive effect on the children’s performance in school (sorry working mothers, but they did). I am much more involved in their daily lives now, and we do a lot together.
However there is a lot that I now cannot do. We used to do a lot as a family: go to the Zoo, the beach, daytrips… longer trips. These activities have been reduced significantly due to my limitations (mobility, fatigue, seizures) and the financial limitations we now have with a single income and a disabled Mom.
Tell me more about child/children’s disabilities. Did you know when they were born that they had disabilities.
They were born perfect. They are still perfect. I just changed my definition of perfect.
If not, how did you feel when you discovered it?
Joe is the oldest and I thought I dealt with it pretty well. I sprang into action to get services, schools, therapists set up. All was OK for a few months. Then one day I was driving home and a Moby song came on, with a line about “troubles with God” and I started driving down the expressway like a crazywoman, looking for a break in the divide so I could drive into oncoming traffic. I got a grip on myself after a while, and sought counseling the next day.
You blog a lot about your children’s issues, and that is so valuable to me and I’m sure, to others that read your blog. How did you go about making the decision to blog about them?
It was a natural progression, I suppose. A lot of my blogging is about medical issues (mostly my own) and medical advocacy. However, I cut my advocacy “teeth” dealing with doctors and school systems on behalf of my children.
I thought carefully about including posts about them in the blog. It really started because they have one of the same medical conditions that I have (it’s genetic). And once I included that, well, the Autism and other stuff came in too.
What do you personally get out of blogging about them and their issues?
I get to celebrate! I think this is one of the first posts I wrote specifically about special needs parenting:
I feel that –right now- they are both in good places. They are 8 and 10 and doing well in school and in general. Things were much harder when they were little and will probably be harder again when they are teens. I want to chronicle this time now, for others with younger kids, and for myself in a few years time, when I am up to my armpits in problems. I can look back and remember that this parenting business is a cycle.
How have your children’s disabilities affected you as a person and as a mother?
I feel that have made me a better person and mother. They have made me much more aware and less judgmental. I was an uppity cow when I thought they were “perfect”. I am much more real now. I have more patience now for them and for other people.
What do you want other parents to know?
1. Follow your instinct, but not blindly (see #2)
2. Do your research. Say you are searching for a suitable school placement for your child: Visit all available options, spend some time at each one and imagine your child in that setting. If that thought makes you want to hurl, then we are back to #1. Following your (literal) gut instinct, cross that school off the list and check the next available option… Rinse and repeat.
3. Don’t compare your child to typical children. Compare your child to him (her) self 3, 6, 12 months ago. That way you will really see and appreciate the progress, instead of lamenting the fact that (s)he isn’t typical.
Has your own illness and disability given you any insight into your children’s issue?
I used to be very much a career person –very goal orientated; -looking towards the next …everything: The next vacation, the next house then next job, The next Big Thing. I didn’t spend very much time in the here and now. Being sick has given me a much greater appreciation for the present. I spend much more time just hanging out with my kids now, instead of trying to prepare them for something.
Is there anything else you would like to share?
When Joe was first diagnosed I was “warned” by the professionals that he may never talk, that he may never learn to read or write and would probably never attend a regular school. Now, I am sure these people were trying to help in their own way; to ‘prepare’ me for he worst… Which. Never. Happened!
I think the moral of this story (so far) is to keep advocating and never give up hope. “They” are not always right!
Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.