Ruth Wells Fischer blogs about her life at Lemonade & Kidneys, and while she writes about all sorts of things, she occasionally graces her readers with an incredibly poignant post about what it's like to be a mom to two children with Asperger's Syndrome. (When my son was diagnosed, she sent me a link to this post about them from a couple of years back, which made me love her a little more than I already did.)
Ruth has always been quick to step up and share her experiences with other parents, and I'm delighted she let me interview her as part of our series for Autism Awareness Month.
I know you have two sons with Asperger's, and you've shared with me before that they're very different. Tell me about them -- how old are they now, and how old when were they diagnosed? How are they different?
My sons are now (gulp) 14 and 12; my older son was diagnosed at the age of 8 and the younger a year later, when he was 7. We were very lucky that our older son had a kindergarten teacher with a special needs child of her own, as she recognized early signs of sensory processing issues in our son when he was six. So he was tracked with some occupational and physical therapy input from a pretty early age, but the formal diagnosis followed a few years behind. By the time the younger one hit elementary school, we were pretty sure that he had similar issues to his brother.
When they were younger, the differences between my sons were more pronounced -- they seem to get more similar as they get older. (I'm not sure how much of that is maturity, how much is due to the ongoing supports and interventions they've both been receiving, and how much of it is due to Early Onset Maternal Senility and lack of memory on my part...)
My older son initially presented much more "other" than my younger son, complete with hand-flapping, grimacing, physical awkwardness, and other classic autism-spectrum behaviors, most of which he's now grown out of. My younger son never displayed those behaviors, but he was always very black-and-white in his view of the world, quickly frustrated (to the point of extreme agitation), and entirely self-contained. My older son is very even-tempered and patient; my younger son is mercurial and impatient. We suspected at one time that our younger son might have a touch of ADD, as he is physically very restless, but diagnosis did not confirm.
How are they similar?
They are similar in their shared ability to recall any bit of information they've read, seen, or heard, no matter how long ago; they both perseverate on topics of enormous interest to themselves but limited interest to others; they are both socially somewhat awkward and have varying degrees of trouble establishing and maintaining eye contact during a conversation; they are both absent-minded as the day is long. They are both thrown by any changes in routine. And oh yes, they are both obsessed with Bionicles.
What (if anything) changed for you and for them after diagnosis?
Initially, I was quite shaken when my older son was diagnosed. I worried that a label would follow him for the rest of his life and affect his ability to engage in world. But I quickly realized that a) knowledge is power and b) diagnosis = access to services. We are lucky to live in a school district that puts a lot of resources to its differently-abled students, and having the diagnosis has provided a level of access to teachers and administrators that has really enabled us to maximize the school experience for both of our kids.
Aside from the logistics, it didn't take long to remind ourselves that our boys didn't change with the diagnoses -- they were still the same interesting, creative, smart kids they had been before.
What sort of autism community have you found for yourself and how?
I did not do a lot of community-seeking, but of course, have found that many of the other moms in the area with whom I'm friendly are also parenting Aspies. Probably not a coincidence, right?
What's the hardest part of parenting Aspies, for you?
Well, I'm outnumbered. My husband is likely an un-diagnosed Aspie, and so it's three against one. I'm the only one in the house who notices when something is spilled, broken, or simply needs attending to, and that gets tiring pretty quickly. (I'm also the only multi-tasker in the house.) My most fundamental worry as a mother, though, is coaching my sons to develop friendships and relationships outside of one another. They are very close, which is wonderful; however, it does obviate any urgency for them to form friendships among their peers. It's our primary challenge.
What's the best part of parenting Aspies?
There is something freeing about the level of acceptance we need to cultivate within ourselves as parents of Aspies that translates into other areas of life. I used to be horribly self-judgmental; I am much more accepting of myself now than I was before being a mother to Aspies. I sometimes feel that it's karmic payback for having been a horribly socially- and self-conscious adolescent myself. It's been a great gift to finally let go of that anxiety.
What has your sons' school experience been like?
We had a very positive experience with our small, neighborhood elementary school. The transition to middle school has been easier than I expected it to be, but there have been bumps in the road. While most of the administrators and teachers we've worked with have been very responsive, my older son's homeroom teacher/case worker for his first year of middle school was very difficult to work with, and I felt as though I was flying blind for the first several months. I finally got mad about it and started reaching out to his guidance counselor for help, and she ended up bridging the gap for us.
We've stayed with our public school system because of its strengths, and never even considered homeschooling or moving to a private school. It's important to me that our kids learn to work within a mainstream group, as they're going to need those skills in adulthood and out in the working world. Most of our IEP (Individualized Education Program) meetings are the same, these days -- we are primarily focused on social skills and communication behaviors. The academics are taking care of themselves.
What would you say to other parents just starting down this road?
Don't be scared! It's hard to hear that your child is going to be facing challenges, but a diagnosis doesn't change who your kid is, it just gives you more tools as a parent. Be prepared to advocate fiercely for your child, and talk to other parents in the district who know the ropes.
And don't be afraid to make suggestions. Two examples:
When we were preparing for my older son's transition to middle school, I had a sharp image in my mind's eye of my sweet, absent-minded son standing in a new school building, hallway jammed with kids, and either not knowing which classroom he was supposed to be at next or not knowing how to get there when he did. I requested that his IEP specify that he (we) receive his class schedule a few weeks before school started, so that he and I could go to the empty school building and walk his daily route a few times. This has now become an annual tradition for both my kids, and has been invaluable as they transition from summer to school. And none of the trained educators suggested it to me -- we asked for it, and we got it.
My younger son's IEP requires a moderated small-group social skills sessions once per week. This year -- his first middle school year -- his group met for a few weeks, and then, somehow by accident, I learned from my son's guidance counselor that the moderator was only booked for a six-week stint. When I questioned whether the contract could be extended (so that, you know, my son could get the services he was promised), the counselor seemed surprised and said "Oh, that sounds like a good idea -- let me find out." So, the battles aren't all going to be big -- sometimes it's going to be a case of making sure things don't fall through the cracks. (The moderator's contract was indeed extended, and just a few weeks ago, I suggested to my son's team that they contract the same moderator for next year, to work with the same group of kids. For some reason, this hadn't occurred to anyone -- that the continuity would be helpful for ALL of the kids in the group!)
What does Autism Awareness mean to you?
We all learn differently, and our kids all have differing needs. Labels can be helpful in targeting resources, but truly, I prefer to think in terms of Human Race Awareness, not simply Autism Awareness. Acceptance for all.
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