August 31, 2011

Getting Ready

It’s August 31st and most schools open in a week. What can I say to you to help the getting ready that is different from other websites or bloggers. What can I say to help you prepare and yet not scare you? Last night, I Googled “special education websites” and read through about 20 of them I’d not looked at before. They’re all pretty much the same. All politically correct. Perhaps what is different for me and this blog is that I have a perspective literally not shared or experienced by anyone else- and have never been politically correct. I’m old now, 72, and still work six day weeks with children and families. I started special education advocacy in 1976 and have seen and lived through every fad, reauthorization, organization and issue that exists. At least 50,000 children have passed my way. At some point, every major player in special education has been involved in some way with my work. I’ve seldom been paid and almost always viewed as an outcast- someone to avoid, just like a parent who may disagree with school staff. I know what it feels like not to fit in. And, of course, there is the nonlawyer piece. There appears to be nobody left who knows what that actually meant- litigating full cases with briefs, argument, and all the rest on an equal footing with lawyers. Young lawyers make fun of me openly, a recent one saying, “She called herself a nonlawyer. What bullshit!” The denial of the past carries over into almost every area now. We live in a time when the line between fact and fiction is often indistinguishable.

What is heralded as something new usually isn’t in the multiple websites that email disability news and events. So what is new? First, you need to understand that at this point in history both science and fact are things to be manipulated, distorted, or denied by policy makers. That is new for our time. (The world is flat. Of course it is. Evolution isn’t true. Of course not!) Things that are new: the infusion of computers and technology throughout every phase of education; the consideration of applying and merging neuroscience with special education (finally!!); the deterioration of quality testing; emphasis on English Language Learners (ELL) and their needs; the abandonment of special education by the federal government to a degree never seen before. What can you make out of these things in an economy that can no longer afford anything special? First, do not be fooled by those who sell the same lectures, books, workshops, and materials about the IEP and your legal rights. This worked 5-10 years ago. It doesn’t work now. Special education experts need to make money and gain customers. It is a business, how they make a living. It is important information but unenforceable without litigation. Understand the basics about special education. A terrific new publication about the IEP (Individualized Education Program (IEP): Summary, Process and Practical Tips) is on Autism Speaks Family Services website and a free down load. Mind you. I would never, never have said this in years past. But I still attend IEP meetings and work with families and see the changes, hostility and regression in the special education process everywhere. You are not imagining this, it’s true. Genuine heroes are some special educators who are working against incredible odds to do what they can. One recently told me he was putting off having his own children because he worked 18 hours a day for the children on his case load. And he meant it.

How do you get ready for your special needs child to go to school? Here are some suggestions:

1. Make sure he/she is healthy. How can I say such an obvious thing? Because our bodies are the physical house for where we learn. It is the internal environment of your child’s learning. Yes, obesity plays a factor. The food they eat plays a factor. Allergies and weather play a factor.
2. Understand what is expected for their age and development. If you don’t have time to clarify any questions you have about this, Google “child development” and put in the age. A quick list of expectancies will pop up to get you started. You must know the range of what is considered to be normal, before questioning what is not. This is also important for your communication with teachers. They should talk to you as much about where your child is developmentally as educationally. One cannot be separated from the other.
3. Do you understand your child’s disability? I don’t mean can you give the name for it or the classification for it. I mean can you explain what it is and how it impacts on the child’s social, emotional, and academic life. What do you see?
   
   What makes the things you see happen? What can be done to improve these things or to help the child and you learn to adjust to the disability? Find another parent to talk to. Don’t hold in your embarrassment or fear- or anger. But share it with an adult. Take time for yourself. No matter how hard things may get with your child, you cannot be an effective and loving parent if you are always exhausted and overwhelmed.
4. What grade or class is he/she in? What children are in the classroom? Remember that there are many programs going on at the same time. There is the one on the IEP (I hope), the classroom curriculum for the various subjects, and the interactions of the children with each other. That one is the most powerful and the most difficult to discover. Is your child mainstreamed (the word used is Inclusion, but that’s a whole different blog) and does he/she have friends in that classroom? What happens at recess? In the bathroom? On the playground? In the hallways? The other children cannot be forced to play with or help your child, but their personalities and strengths and weaknesses provide the models your child will copy.
5. Technology and computers. Classrooms across the country have grants and funding lines for computers and computer literacy for every child. What one discovers is that many children are more skilled than their teachers. Really examine how technology is used in school and never let it substitute for real people, real communication, real friendships. Make sure that the research topics are not merely copied from the screen in the way they used to be copied word for word from the encyclopedia.
6. The teacher. Try and meet the teacher as soon as possible. Be as friendly and supportive as possible. Make sure she/he has a copy of the IEP. Make sure they know they can contact you, a good time for that contact, and keep lines of communication open. Remember that they are the low man on the totem pole, and that everything gets dumped on them, from the special education supervisor to the building principal. Remember to have a nightly ritual for homework that is predictable and scheduled. Your job is not to do the teaching (Remember that.) The minute that your child seems to be a blank on the homework, it means that he/she didn’t get the information in the class or has lost it in memory by the time he/she gets home. Give it a week. If this doesn’t improve, schedule a meeting with the teacher. Never accuse. Explain the problems you see and ask for help. This is usually done via email these days. If that doesn’t work, then schedule a face to face meeting. If you do have a problem with a teacher and can’t resolve it, then go to the case manager. If that doesn’t remedy the problem, put it all in writing and send it to the director of special education.
7. After school activities. It may be that you can’t afford any music lessons, dance, or sports activities. The real issue here is down time, fun time, family time. Who will take the child where and pick him/her up? The first consideration is- what does the child want- not what do you want. Curiosity is free. Creativity is free. Imagination is free. Get them away from the computer as much as you can. Don’t use that as a baby sitter. See how many things you can do with a ball, a deck of cards (including construction), sticks, milk cartons, you get the idea. Sing together. Cook together. Watch clouds together. Memorize nursery rhymes and poetry and perform for each other. How many ways can you move across the floor? There are more things to do that don’t cost money than do. Get started.
8. Sleep. Yes, I’m going to tell you to get the TV and computer out of their room and get them to bed at the proper time. Their bodies need what sleep provides and reboots the system for the next day. Don’t underrate its importance.

This will not be an easy year for any of us who are not rich- that means 99% of us. Things may get worse before they get better but nobody can make you lose hope except yourself. David Brooks wrote a recent column called “The Rugged Altruists”. He told stories about virtues that make things better when all around us is crumbling. His first was courage, taking chances by taking on new experiences and challenges. We must all have courage as we face the new school year. We must welcome all of the new experiences, good and bad, and accept the challenges of educating and raising a child with a disability, the challenge to get the education our child requires in order to become independent. The second virtue was deference, “the willingness to listen and learn from the moral and intellectual storehouses of the people you are trying to help.” We must be willing to listen to our children. We must listen to the things they find just and unjust, to the things they value, the things they fear, the things they want to be. Brooks’ most essential value was thankfulness, “the ability to keep serving even when there is no evident reward- no fame, no admiration, no gratitude.” As parents, educators, clinicians, people in all walks of life, we must be thankful for the possibilities that life brings us with our special children. The evident reward is their growth, improvement, happiness, and growing independence. We do not receive any token of recognition for this work, but are grateful to God for the journey.