Desperate Mom in Michigan

I've been an advocate for children with special needs for more than 14 years. I became an advocate when my son was diagnosed with autism in 1998.

I'm happy to be learning how to blog because now I can better tell my story and those of other parents who struggle just to get through the day. Having a child with special needs is demanding -- to say the least -- even for parents whose children are considered "high functioning."

For example: I have a friend who has two little boys on the autism spectrum. Her full-time job is nonstop till she collapses in bed at night. Besides all the regular stuff that parents do for their children, Linda's day also consists of scheduling and then taking her kids to back-to-back therapy appointments every day -- speech and language therapy, occupational therapy, sensory integration, and structured play dates. The play dates are important because her children don't have enough language and natural communication skills to have actual "friends" at school. Children with autism don't pick up on social cues. Most must be taught very basic social skills that the majority of children learn intuitively. Mom's like Linda are busy. They just do what they need to do for their children day in and day out.

I spoke on the phone today to a single parent of an 18-year-old young man who has multiple diagnosis, including autism. She's still doing everything she needs to do for her kid. This time it's battling it out again with her school district. Even though her son is "high functioning," at 18 years old he can only read at the 2nd grade level. Children with disabilities are supposed to be protected under the U.S. Individuals with Disabilities Education Act (IDEA). She's taken this district to court once before and prevailed because they weren't doing what by Federal and State laws they're supposed to do. That is provide FAPE which is a Free Appropriate Public Education.  

This mother wants what most parents want for their children -- an education so he can get a job and make a living. The fear, anger, and frustration in this woman's voice made me say something that as an advocate I've never said to another parent. I listened to her story and then suggested that she "give up" on this district and move to a more affluent area.

I didn't know her, but I could tell that she was physically and emotionally worn down by an educational system that is broken across this entire country. After I got off the phone, I wondered if I gave her sound advice. I'm not one who gives up easily. Upon reflection, I think I helped her. I didn't tell her to give up on herself or her son. I told her to consider approaching the situation in a different way. There isn't one school district in Michigan that isn't hurting financially. Not one! Having said that, some are better than others. Perhaps moving could give her a new way to look at things with people who had not been or heard about her former educational struggles in that district.

As financial resources within school districts decline, I hope that as an advocate, I don't give up. Some days it seems like the cards are stacked against us. I suppose I'll just keep doing what I do and hope that in some way I'm helping someone and making a difference.