Tuesday, July 28, 2009

I'm Just Sayin...

Last week was fishing camp. This was a federally subsidized program at a local public park. Registration was only $15 per camper for the week and the idea is to teach kids to fish to give them a productive and fun alternative to illegal drug use. I'm not sure about the premise of that (something tells me several of my pot-smoking friends from my past probably spent a lot of time tripping while fishing...) but I am all for a good deal. And since it was federally subsidized I knew they couldn't turn down my dear children with special needs. That's one child with Down Syndrome, check, One child with Autism and Mental Retardation, check, One child with Reactive Attachment Disorder, check. So I signed them all up - Miriam, Philip and Ruth all got to go to fishing camp. Andrea was also signed up but sine she's stuck in PA with her foster family in a tangled web of interstate compact requirements, she wasn't able to go.

The three of them had a blast. They *loved* fishing. They loved fishing camp and they all said they'd like to return next year. Now my beef is with this whole idea of integration. It's been called various things over the years - started out as mainstreaming and may be called something completely different at this point but I wouldn't know as I checked out of that idea long ago. In fact, I've been kicked out of yahoo groups and left support groups because of the controversy caused by the opinions I'm about to share. So go ahead, flame away in the comments, just keep it clean please.

On about day 4 of 5 days of camp I turned to my three children with special needs and asked them if anyone could tell me the names of people they'd met at camp (and with whom they had now spent about 12 hours of camp time). Out of three people, I got one name. One. And that wasn't a name that was shared with any enthusiasm. Apparently making friends with said child didn't work out too well and I can only imagine the reasons.

Now my understanding of this whole integration or inclusion or mainstreaming or whatever you want to call it is that it is supposed to benefit everyone. The typical children are supposed to glean valuable friendships and insights from their differently-abled classmates, the teachers and instructors are supposed to facilitate and foster such exciting and comfortable relationships and the differently-abled children are supposed to find themselves in a wonderfully tolerant and inviting atmosphere. Never have I seen this actually happen whilst out and about. Granted, we homeschool so it *does* happen in our home. I am their instructor and facilitator, their sibs are their friends and they are the recipients of a lot of social instruction and "inclusion" in main-stream activities and learning environments.

I know their rights and I do try to include them in as many mainstream programs as they can handle. But I refuse, for example, to sign up Philip for a parks and rec U13 soccer team when I *know* he will not be able to keep up with the other boys. He will not understand the team dynamics, he will not be an asset to the team spirit or to the scoring record. The other boys will find him odd and annoying and the poor parent volunteer coach will most likely have no idea how to handle the dynamic, reign in the criticism of the other children and help Philip conquer his autistic tendencies and make his own little splash on the team. It's a pipe dream at best, at its worst it's setting up my chidren with special needs for failure they aren't even going to recognize or understand. Which is why the three of them went to fishing camp together. They had each other at least (Philip also had his one best friend in all the world along too so he had a bonus but that's fodder for a different post) and they could relate to one another when no one else would try to relate to them.

I have had some small successes. I have to say that the key to making the whole idea work is the instructor/teacher/facilitator role. I find, for example, the YMCA programs to work really well for our kids with special needs. Their instructors/coaches are paid employees, well-trained in teaching and coaching children with a broad range of needs and abilities. They are generally great at drawing out the talents of our kids and helping the typically functioning kids relate to them at a more personal level. Our recent foray into swimming lessons went quite well , also, for the girls, who had an instructor who immediately keyed into Miriam's and Ruth's needs and strengths. If the schools were full of teachers with her level of insight and skill at handling their needs I may not hesitate to send them to public school. Philip's instructor, however, was young and inexperienced with his level of needs. She made some crucial mistakes in instructing him and now he may never be able to do a few of those strokes since he learned them wrong the first time. The girls' instructor also made an effort to form a cohesive group among the four students in her class (3 of whom were my girls). Philip's instructor made no such attempt and Philip remained an outsider without any chance at developing relationships with the other students in his group.

But we have had great success at helping our kids with special needs find a place and feel loved, accepted and be able to form genuine friendships. That is within the special needs population itself. When Philip and Miriam are with other folks who share their needs they thrive. Philip gets to be the hotshot on the Special Olympics basketball team because he happens to be a bit higher functioning than the others. Miriam can't sing a single note on key but she loves to sing and she got her chance to put on a costume and sing her heart out in the special needs musical production. The other parents know how to talk to my children, to bring them out, to joke with them and to seek out their true personalities. The place where we feel most at home with our chidren with disabilities and where those children can really shine is right in the midst of others like them.

I do see it as my job to prepare them to be as much a part of the mainstream population as they can be. Eventually they will hopefully hold down jobs, perhaps live in a group home within the community, or walk to the store to get themselves some groceries. But I don't think they will ever find true acceptance in the mainstream, excepting the few gems who surprise us along the way and care enough to open themselves up to them. And so Getting Along in the World is, for us, just another school subject. They don't do well in that subject and they need lots of extra tutoring. Mainstreaming, Integrating, Including...it's nothing but a pipe dream.

You see, I'm just sayin'...if they can spend a week with a group of kids who didn't even bother to share their names with them, even under the tutelage of two paid instructors, what good does the whole idea do them?

Tuesday, July 14, 2009

When was the last time...

you read through the Declaration of Independence? Here is my friend Nick in Revolutionary soldier garb reading the document from beginning to end on July 4th. It's always good to remember our roots! Thanks Nick!

Wednesday, July 1, 2009


I have PTSD- Post Traumatic Stress Disorder.

It isn't something that only affects war veterans. Anybody with trauma in their past can experience it.

I was just a child when I was traumatized. I didn't ask to be molested, to be a witness to other sexual violence, to be forced to keep secrets that no child should have to bear, to be born with a heart condition that required life-threatening surgery, to lose friend after friend in car accidents. But it happened to me. I was only a child. I had no authority, no power, no responsibility to fix what I experienced. And nobody saw the signs, and nobody helped me and so I learned that the world is not safe, that people cannot be trusted, that those in authority do not always help or care, in fact often they hurt, that even grown-ups can turn a blind eye to what is really sick in the world. I yearn to feel safe and when there is no safety I turn away or lash out.

I have bad dreams. Sometimes I am afraid to go to sleep at night because men with guns haunt me and try to shoot me down. Sometimes I am afraid to go to sleep because something will chase me and I won't be able to move my legs, I will be unable to avoid being hunted down and hurt....again.

I may lose my focus during a conversation. If I hear something that doesn't seem safe I will turn off and stop hearing and try to figure out how to get safe again. Sometimes I can never figure it out. Sometimes I won't be able to have anymore conversations with you or I will have to avoid certain topics, especially if my pain is bumping into pain you don't even know you have inside of you.

I may lose my temper and you won't know why. You won't know that the door slamming makes me feel like a lost 5 year old again, alone in a hospital bed wondering what is coming down the hallway outside my door, outside my control. There are many sounds, many phrases used in conversation, smells, songs on the radio, which remind me of past trauma and make me feel helpless and angry inside.

I probably won't remember your name or what you look like after I meet you for the first time. I can't remember a lot of things - the color of my children's eyes, details about people I've met, whether or not I've seen a movie or read a book before. Memories are painful things and my mind doesn't always like to make new ones and so I've forgotten years of study in college and graduate school, I don't know if I liked a movie I saw last week because I can't remember a thing about it and I can't tell you my children's birthdays. There are, however, some memories in my mind that are vivid, painful, agonizing, that haunt me and won't go away.

I live with the constant fear that those I love will be gone in an instant. I assume the worst will continue to happen to me and the ones I love. I expect to be traumatized again and again.

All I want in the world is to feel safe and for my children to be safe. If I feel we are being threatened I will do my best to protect us. Sometimes my best is too much and I fear the day when it will not be enough.

I am getting help for this condition. I am in therapy and I've come a long way. I no longer feel the rage I once did. I remember the trauma that caused this all and I can now put real emotions to what were once just silent movies running in endless loop through my mind. I don't have nightmares very often anymore. I understand what "triggers" my feelings and my reactions. I can identify when I don't feel safe and I know why I feel that way and I have healthier ways of handling that feeling. I have adopted children who have been traumatized also. I understand them better. I am a better parent because I know their pain. I want to be a whole person. I want to have my memory back. I want to be able to feel appropriately and love freely and trust more. I want to *know* that God is good and loves mankind. And I want all that for my own children. I want them to have the care-free childhood that was stolen from me by perverts and circumstance.

I wrote this as part of my own healing process but as I get better, I am realizing more and more just how many of us walk around with pain from our past and never get help. And hurt people wound others. So many people who hurt shut off parts of themselves to maintain and move on as if nothing happened. If you can relate to what I've written here, please get help. You don't have to live with the fear and the rage and the confusion. It can get better.