The Isolation That Can Be Special Needs Parenting

I was reading my regular blogs this morning and was over at The Final Maze. I wrote a comment that turned into a post, so I came back here. Foster Abba wrote, in part,

As a parent, I often feel like I am living in the prison of fearful parenting, but I often don’t know how to escape.  

 As a Special Needs Parent for 30 + years, I have felt as she feels, for a very long periods of time. Years even. The internet has helped the second time around. I love the internet support. Kari was a big help when I first started blogging and GB was drowning in first grade, The ideas she gave me about modifying GB’s day were invaluable. Most of them ended up in her current IEP.  Still, it is not the same as having an IRL friend  who gets it.

I found a few close friends IRL that understand my childrens’  disabilities. One is a special ed teacher that started seeing GB at 7 months in our home. We became friends after GB went to Special Ed preschool and she stopped coming to my house. She has girls the same age as mine and nothing phases her. Another is an adoptive Mom with ten children currently at home. Her three year old makes my kids, even Hope, look like a walk in the park. The last one is a widowed grandmother, raising her granddaughter. She was a adopted herself, and adopted both her sons. She has boundless empathy and nothing much flusters her, even when we are out in public and one of them, usually, but not always Hope, has melted down. I found the grandmother and the adoptive parent at a gymnastic class in a gym that has broad inclusion policies (they took GB at 2 1/2, when she still wasn’t speaking to anyone).

We have just signed up for a parents of special needs support group. Now that the girls are in self contained classes, we are also meeting parents and slowly getting to know them as we let the girls socialize a bit. Some of them we know allow things we are diametrically opposed to, and we don’t feed those relationships. However, there are parents, adoptive and otherwise, that share enough of our values and concerns to make it workable.

I know you have additional concerns, but The Dad and I are 54 and 53 and the only one that grew up when we did and understands our references is the grandmother. In general, the parents we meet are from a different generation then us and are still struggling with acceptance and how to get the help they need.

 I have dealt with CPS, and with my mountains of paperwork have easily gotten rid of them. Even with MK, who was by far the most difficult child I have dealt with. I have a trail of paper work covering my a$$. I no longer worry about them. When the inevitable complaints come, my daughters’ treatment teams have my back.  It worked well with my first family and I am just as meticulous this time around. Everything I know to be true is documented by respected professionals.

I deal with people who think I am crazy all.the.time. I register their reaction and move on. I do not have the time or energy to deal with those people. There have been people who have never given my kids a chance because of their disabilities and the fear those disabilities arouse in them. Parents of NT kids are frequently afraid of our kids, especially once they are school age and not so cute anymore. My kids have the additional difficulty of being varying shades of brown with white parents. As a family, we already stick out.

Support is support and if you you never leave your house, you will never find the support that may let you out of your prison. Self imposed prisons are still prisons and are no way to live.