Alternate title: “Hello, Regular Readers!”
5 Minutes for Special Needs posted an interview with me today. My interviewer, Deborah, suggested that I post the full text of what I wrote to her here. So if you’re big on punishment, you can read my wordy, wordy, wordy response to her interview questions here. If you’re more of a Cliffs Notes kind of person, read the far superior edited version at 5MFSN.
Also, if you’re new here and looking for my writings on autism, a lot of that is over at Trusera, where I have been specifically writing about Jack’s autism. You’ll find your fair share of that here though as well. (Poke around in my “Jack” and “autism” categories.)
Sam, Jack, and Quinn are the lights of my life. Thanks for coming by to share my journey with them. And now, without further ado, some loquacity:
Tell me a little about yourself and your family.
My name is Jean, although I blog as Stimey. My family lives in the DC metro area, Maryland version. We’ve lived here for about five years.
Before that we lived in Fairbanks, Alaska, for a year, where my middle son (Jack) was born. Prior to that we lived in Oakland, California, where my oldest son (Sam) was born. We’ve moved around because my husband is a lawyer and had a clerkship in Alaska and then found a job in DC.
My husband and I have been married for nearly ten years and have three kids: Sam (7 y.o.), Jack (5 y.o.), and Quinn (3 y.o.). Jack was diagnosed with PDD-NOS a little less than a year ago, although we spent most of the year prior to his diagnosis exploring his delays. It was clear to me that he was autistic long before I could find a professional to agree with me. Now, all the professionals agree with me.
Tell me more about child’s disabilities. Did you know when he was born that he had disabilities? If not, how did you feel when you discovered it?
I did not know when Jack was born that he was autistic. Sam had speech delays, although he is typical now. When I initially told my doctor, when he was two, that I thought Jack was delayed, he wasn’t too concerned, although he did refer to me the county, who had provided services for Sam. The county found that Jack had a slight delay, but didn’t qualify for services. At the time, I took that as a good sign.
I started to be more concerned later that year, but we really started looking harder at him when he was three. Around that time, my husband and I were watching a story on the news about teenagers with Asperger’s, and we both looked at each other and said, “That’s Jack.” I started reading and doing research and came to the conclusion that he is autistic. The people who evaluated him, as well as his teachers, were not so sure.
We finally had him evaluated by doctors at the National Institute of Mental Health, where they told us that he was on the spectrum. I remember sitting in the room across from the doctor when he told me. He asked if I was okay. And I was. In fact, I was thrilled to get the diagnosis because it gave me a roadmap, as well as providing a reason for which the county would have to give him services. Plus it gave me an answer, which is something I needed.
Because I had known for so long that he was autistic, even though other people fought me on it, I had been able to come to terms with it slowly, instead of suddenly at diagnosis time.
The process of accepting it was difficult though. I’ve done my fair share of crying as I watch Jack act so differently from his peers, or as I worry about what the next few years of his life will be like. We are so lucky that Jack will probably grow up to be an independent, successful, albeit quirky, person. But it might be a rocky road getting there. And it makes me sad that he’s going to have to struggle.
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? What do you personally get out of blogging about them and their issues?
Completely coincidentally, I started blogging at about the same time I started wondering if Jack was autistic. I can’t imagine how my life would have been different if those two things hadn’t coincided. I found some terrific special needs blogs. Those writers have given me advice, moral support, and virtual hugs when I needed it most. I don’t think I could have gotten to where I am without them. I certainly wouldn’t have gotten here this fast. I hope that through my blog I can help some others the way those before me have helped me.
Because my blog was intended to be about my family, it was clear to me that I would write about my children. I am a chronic over-sharer. Check out my blog if you don’t believe me. So when I was going through the process of figuring out what was going on with Jack, it was natural to put it on the screen. And it was, in fact, extremely therapeutic to do so.
I understand the concerns people have regarding blogging about children. But I think it will be really valuable some day for my kids, all three of them, to go through and read what I’ve written about them, to see what their everyday life was like, and most of all to see how much their father and I love them. Maybe it will give Jack some clarity as a teenager or an adult to read what he was like as a child.
What is a typical day like for you and your family?
We have a pretty typical existence. We get up in the morning and the kids go to school. I have my three-year-old with me throughout the day. Starting at 3:15 Quinn and I go wait for Jack’s special ed bus to arrive, then we walk up the street to get Sam off of his bus.
We come home and do homework. Then, most days we have some sort of therapy to go to: speech therapy, social skills group, or occupational therapy. Until recently we were taking Sam to karate twice a week as well.
After that we’d come home, play or watch some TV, eat dinner, do some crazy dancing in the living room, and then go to bed.
I work part time from home, so after my kids go to bed at 7:30 or 8, I jump on the computer to do my job. That’s also when I do my blogging. I usually stay up until midnight or 1 a.m. It’s a little tiring, but I feel fortunate to have a job that I can do from home at literally any time of the day or night. And I love my blogging community, as well as the physical act of writing, so much that I feel compelled to do that also.
How have your child’s disabilities affected you as a person and as a mother?
Jack’s autism has had a huge effect on me. Seven years ago when Sam was born I was terrified of autism. I had an image in my head of every stereotype you could think of. When Sam was a toddler he often lined up trains and got really upset if they didn’t space themselves correctly. And it scared me to death. I thought of autism as the end of the world.
Obviously I see it differently now. I can’t speak for every parent of an autistic child, but speaking for myself, I have to say that Jack has made me less judgmental, more tolerant, and has opened me up to a whole world I barely knew about before.
I also feel like I share a lot of characteristics with Jack, so his autism has taught me a lot about myself too. I really relate to him.
What did you do right? What do you wish you had done differently?
What I did right was to accept Jack as autistic and not fight it. I acknowledged that his autism is part of him and always will be part of him. And yes, it will make his life harder. But it also makes him special. And I mean that in a good way.
What I did right was to learn early on that I need to advocate for Jack. It is up to me to help him get what he needs from therapists, from school, from the county. He can’t do it himself, so I have to.
My biggest regret is that I didn’t get him into speech and occupational therapy earlier. After he was turned down for county services, I should have immediately found private providers. I kept waiting for the county to realize that he needed help. I’m still waiting. But at least he is getting the help that my insurance and I can provide.
What do you want other parents to know?
Trust your instincts. You know your child better than anyone else. If you think there is something going on with him or her, you are probably right. If you think he needs some sort of service, or is falling behind in one way or another, trust yourself. Or if you think he or she is doing better than other people tell you, trust yourself. And try to figure out how to help.
Also, get a support system. Be it a local support group, an online community, or a friend, find people that understand and accept what you are going through.