As I’m blogging here, I’m also listening to the feminist blogger panel from the Netroots Nation. They made me smile as they discussed the “Where Are the Women Political Bloggers” ruckus from five years ago. Five years in the Internet is like dog years, so their chat made me feel very old indeed. One of the panelists said that one flaw in the feminist blogosphere today is that it is rather homogeneous. While the issues that the feminist blogosphere covers are extremely important, she said, issues and concerns of women from other communities also deserve attention.
As I wrote in my Intro post, my experience of being a mother helped to awake my inner feminist. But I’m more than a mom. I’m a mom of a child with special needs.
When I first started blogging, I was primarily a mommyblogger. When my son turned two, I wrote a post that described my boy as a serious character who hadn’t yet learned to talk. Two of my readers e-mailed me and urged me to get him evaluated for autism. To tell you the truth, when I first got these e-mails, I was outraged and horrified. How could they diagnose my child on the basis of a three paragraph post? Yet, I did as they suggested. State social workers came in and evaluated him. He qualified for speech therapy. At that time, he changed from a so-called “good baby” into a frustrated, miserable toddler. He screamed all the time. No babysitter wanted to be near him. My mother would get her feelings hurt, because he withdrew from her kisses, so I didn’t have help from her either.
The next three years were very difficult. He first learned to communicate with sign language, and his speech gradually improved at age four. Even though he mysteriously learned to read at age three, there were so many more things that he couldn’t do. He was tossed out of one pre-school, and I cried in the parking lot. I put him in a daycare for a couple hours a day for socialization, but they tried to eject him also, because he wouldn’t answer their questions and because he kept trying to run out of the room. They finally agree to keep him for ten hours a week, if I paid $1,000 a month on top of tuition for a one-on-one aide.
And then there was all the paperwork and forms and bureaucracy to get him services. It was a full time job to have the school system or the insurance system pay for his therapy. All the books and literature was screaming at me to get him therapy FAST or else he would be mute for life, but those institutions moved so slowly and so inadequately. I tried to continue my research in odd hours of the day or on weekends, when my husband came home, but it was difficult.
I had recently moved to a new community, where I had no friends. I couldn’t make friends with the other parents from daycare or nursery school, because nobody wanted a playdate with my kid. I was chained to the therapy schedule and couldn’t even leave the house much.
Today, things are much better. Ian is finally in a good school. It’s a public school that is specifically aimed at kids like Ian, but it’s out of district. The school system isn’t happy about this major expense, so I’m always worried that they are going to bring him back and throw him in the class for troubled kids. Ian has improved so much. His speech still isn’t age appropriate, but it’s adequate. He’s still advanced academically. And he’s just a great all-around kid; he makes me ridiculously happy.
There are millions of women who are parents to children with special needs. One out of 94 boys in New Jersey have the same problem as Ian. It is incredibly difficult to work when you’re dealing with bureaucratic red tape, with therapy schedules, and with phone calls from schools telling you to get your kid THAT MINUTE. It is extremely expensive, because so much therapy isn’t covered by schools or by insurance. Often women are doing this alone, because the stress of raising a special needs kid can lead to divorce. 80 percent of parents of autistic children get divorced. It is lonely.
While I wouldn’t trade my experience with Ian for anything, I could have really used a hand in those early years. Schools and health insurance companies have to take responsibility for therapy and childcare; they can’t keep pointing fingers at each other. There needs to be more support within communities. Families, and specifically women, can’t be impoverished by their caretaking responsibilities.
Ian
Thank you, thank you for sharing your experience.
My mother has a daughter with Asperger’s Syndrome (me) and a son with autism. She’s also divorced and was out of the workforce between Ben’s birth and the divorce.
She’s also my hero, because she put in so much time and effort making sure all three of her kids were taken care of. Ben went through some rough times at school and Mom was on the phone with the district autism specialist a lot until she was certain he’d be all right at school. (She kept in touch with the district until he graduated, and is still helping him make plans for college — he starts community college next month.) For that matter, she was also the one who had me evaluated for Asperger’s Syndrome and given extra help with social matters.
I hope you have the same good fortune to have people in your son’s school helping you. I don’t know directly what it’s like to be a mother, let alone of an autistic kid, but I do think people like my mother are awesome.
I really appreciate this post. My toddler daughter has issues and we are still in the diagnosis stage. She was recently discharged from the hospital for the second time in a month only to be kicked out of day care. We have had a really bad experience with early intervention therapy and are now considering hiring a private speech therapist, which means more credit card debt and/or a second job for me. And I’m worried that the insurance company will soon decide not to pay for all of the specialists she has to visit, and then what? They’ve already denied one of the testing procedures that one of her doctors ordered. And we still don’t really know what’s wrong. There are next to no day care centers/nursery schools that are willing to accept a child with special health needs, and the ones that do are extremely expensive and highly competitive. And I live in New York City. This is all new to me and it is frustrating, depressing, and very isolating.
Thank you for this post. You could have been writing the story of my life since my son was born 12 years ago. My son has autism, and I spend HOURS advocating and fighting for ever inch of services and accommodations he gets, usually without much of a support system. My marriage to his father ended in divorce, and my second marriage is always under strain because much of my attention is directed at making sure my son gets through his day-to-day life. And, unlike many couples, we can’t say that one day when we are “empty nesters” we will be able to devote time to our marriage — my son may never be independent enough to leave my home. I always tell people that autism is not hard, the system is hard. I do think this is a feminist issue because the primary caretaker of most children with disabilities is a woman, and the burden can be overwhelming — physically, emotionally, and financially.
Thank you for this post, which lays out the challenges but also mentions the joy. The line “autism is not hard, the system is hard” is a useful way of framing things.
Public schools are a difficult place for special needs kids to be. My nephew has been diagnosed with Aspergers and bipolar disorder (I’m skeptical about the bipolar diagnosis, but the Asperger’s seems right on), and has been kicked out of school countless times. He even goes to a school for children with behavioral issues and has been kicked out. It has broken my heart to see him demonized by the school and many of the doctors he’s visited.
On the other hand, I’ve worked in a preschool, and I know the difficult position teachers and administrators find themselves in when they have to manage large groups of children with inadequate resources. I often had situations where children had to go sit in our director’s office because they were disrupting the classroom environment, and they often got sent home because the director had so many other things to do that she couldn’t really supervise them. These children are not bad or unfit for school, they simply need more attention and activities that are more appropriate to their personality/learning style. Many schools just can’t provide that kind of care because they’re overloaded and underfunded.
So glad you’ve managed to do so well by your son. My son only needs speech therapy, and that’s been hard enough to deal with. The first area we lived in it proved pretty easy for us to get services, but when talking to the mom of one of his therapy classmates, she told me about how hard a time she had getting any services at all, when her son’s needs are significantly greater than my son’s. Guess we just got lucky.
We’re in a new area, and I’m finding the transfer difficult, but it could be worse.
I’m kind of dreading kindergarten for him. He’s not considered autistic, but he’s as shy as I was as a kid, and that’s going to make things really hard on him. We’re trying to get him into more social situations but I work at home and the money just isn’t there for daycare. Fortunately he normally settles into new situations after an hour or so, so it may not be that bad.
This is a great post. I look back to when I was a child, in the Pleistocene Era (lol) and I remember kids like Ian in our classrooms, neighborhoods and families–but we just didn’t have the words then. We just knew they were different.
How much better their lives would have been if they hadn’t been forced to try to be like us, and we’d all been educated in how to help.
@Gina – regarding the dual bipolar-Asperger’s diagnosis, I and several other Aspies I know showed signs of cyclothymia-to-bipolar-2 until we were able to figure out how to keep our levels of socialization and stimuli where we could handle them. (We would overstress ourselves socially and the exhaustion led to depressive states, while overstimulation could lead to hypomania.) Obviously I can’t say if this would be the case for your nephew, but since you mentioned being skeptical of the bipolar, I thought it might be worth mentioning.
Has the internet improved things? For first time parents, is there a definitive resource that parents can use to find resources, chat with other parents, or locate a quality service provider nearby (like a speech therapist)? Where do I find support groups in my backyard? There is a lot of info on the internet for parents of children with special needs, but there is so much that it is overwhelming. Where can I get info about basic needs? Non-profits?
I’ve been that kid in the school system, so I just wanted to say thank you so for reminding me this isn’t just a problem that I faced with my family. And I wanted to add that your son is absolutely adorable :)
Thank you so much for sharing your story. My son has bipolar disorder and I sympathize completely. Even with the very best school staff and support school is STILL hell for him. We’re still trying to find a mood stabilizer that works for him. The whole ordeal has put an incredible amount of strain on my marriage.
I think one explanation for the scarcity of bloggers who also happen to be parents of kids w/special needs is that we just don’t have the time. I used to blog and writing is one of my passions. However, it is also a solitary activity. Raising a special needs child is extremely demanding and emotionally exhausting. Blogging simply is not a priority.
Thank you so much, Laura! I edit http://www.HealingThresholds.com, a Web site that offers up-to-date therapies for children on the autism spectrum. We appreciate moms who can take the time to share their experience and we’ve tried to make our site a “place” where you can dash for 10 minutes of information or ask a question or get an answer. I hope you get as much support from this blogging as others have gotten from you.