Sounds groovy

Jeff and I attended a concert, A Tribute to the British Invasion, at the Old Town School of Folk Music last night.

J: That was the best concert, ever!
L: It sure was great. Were you inspired by all the guitar players? *
J: Yes.
L: Were there any new songs you particularly enjoyed?
J: Mostly all of them.


* Jeff has been taking guitar lessons for over a year.

Advice from Bev*

Be off you funkieness and enjoy life and stop bitching.


* Bev, her sisters, sisters-in-law and many nieces have all cared for the boys on-and-off over many years. Sadly, she and her family returned to Jamaica this year.

News from Wisconsin

How is Hart doing? I am asked that often, but I don't really know how to respond. How is he doing? Well enough to return home? Well enough to take advantage of his current placement? Well enough to make some much-needed academic improvement? Then there are follow-up questions. Is this the best place for him? How does Jeff feel? How are they together now? The answers are all so complicated. No one making polite conversation wants to hear the whole tale.

The truth is that Hart isn't doing particularly well. The same behaviors that were impediments to him here are difficulties for him there. He is still socially inappropriate, easily frustrated and highly anxious. His skills are dismal.

The familiar cycle of everything-is-ok-but-wait-for-the-other-shoe-to-drop is still the order of the day. Hart had two excellent weeks following his home visit here over Christmas. So he announced to everyone that he planned to go home. This greatly alarmed his dad and puzzled the staff. Where did he get this idea? It's unmistakably Hart: he finally got to Level 4 with its additional privileges, so now he was done and ready to return home. I gave him the usual speech that goes, "This is your school now. You must stay there for the duration of high school." It hardly mattered: a day later he got angry about something else and kicked a hole in his bedroom wall. Back to Level 1.

I know Hart very well: not one attempt at remediation has affected any change at all. Not years of psychotherapy, years of specialized education, many different special education settings, behavior charting, rewards and reinforcements, "empathic responses," as opposed to penalties, many different medication regimes. Nothing. This summer, I lay awake reviewing our history: when I had the choice of two private therapeutic schools, should I have chosen the other one? Had we started therapy for attachment disorder too late? I endlessly second-guess myself.

Is Hart better off at a residential school? is probably the real question. To this I can say, unequivocally, YES. I can hardly expect low-wage house staff to devote themselves as doggedly to Hart as I did, but then there are many more of them, and I had simply run out of steam for the job. I know he cannot be "fixed." Perhaps "maintained" and "controlled" are the best I can hope for.

Here is probably the most interesting outcome. Although Hart and Jeff are identical twins, with very similar impairments and disabilities, I have now seen the one extraordinary trait that has enabled Jeff to make a greater success. Jeff is able to "customize" his environment to his best advantage. For example, he is no doubt one of the lower-functioning students at Cove School, but is able to make Cove's program work for himself. He is not a stellar student, of course, but he is making slow and steady progress, both academically and behaviorally. Last summer, he was accepted conditionally to an overnight camp program for special needs kids. It was a reluctant trial on the part of the camp administrators, but I promised to trek up and collect him, if needed. I hoped and believed that he could handle himself and in fact, he did. He was invited to return this summer.

I can't account for this significant difference in the two boys, nor can I change it or adjust it. For the moment, this is the best situation for our family. I have stopped second-guessing myself.

Jeff (artwork)

Michele and Jerry visit the Shedd Aquarium with us (photos)

A bit of nostalgia

A visit to Jeffville (photos)

Special Needs Skating Meet, Franklin Park

Case closed

Money Down the Drain from December 30, 2008, The New York Times.

I rest my case.

2009 I.E.P. Survival Guide

A favorite pastime of parents of special needs children is swapping IEP* stories. The education of our children hinges on these meetings, so everyone has a tale or two to tell. At the very least, parents are in for two conferences per year: one to develop goals and plans for the coming twelve months and one to evaluate the progress under the existing plan.

There are lots of resources to apprise parents of their rights, and information about what to expect at the conference. However, to my knowledge and in my experience, there is no resource to tell parents what to do and how to behave. Everyone hopes for an amicable meeting, but in truth, a friendly and convivial conference is not always the most productive and a big emotional showdown never is.

I offer six suggestions:

Readjust your expectations
Perhaps you imagine this conference to be much like the twice-annual trip to the dentist, not dreaded, not pleasantly anticipated, but a neutral obligation. This is the wrong model. You are there to talk about your child's impairments and deficiencies. Mentally prepare yourself for this. If your child were making good progress and there was only good news, he or she wouldn't need special education, right? Many parents complain that they only hear the worst about their child, never positive news. If you came to the dentist for a root canal, would it really matter if the hygienist praised your diligent flossing?

Accept staff expertise
"You know your child better than anyone else." We parents are told this over and over again. It is obviously true, but how is this platitude useful? Staff vary in classroom skills and "bedside manner." There will be varying competencies in the assembled group, just like in every other gathering. Even so, these people have had experience with many different disabled children, while you probably have had experience with only one. If you go into the meeting raring for a fight on your child's behalf, you may dismiss valuable information. You will be outnumbered at the meeting, but you need not be cowed.

Staff and parents have different agendas
Ostensibly, everyone is there to work out a feasible educational plan for your child. But you, the parent, want the very best education and all the services which your child needs. The teachers and administrators have another requirement: they must meet the obligations of the IEP in the most cost-effective way possible.

Special education is very expensive. Every service, even pull-out services from a regular classroom, comes at a cost. The money issue is not a secret agenda, but the way it plays out in every school district and every meeting is. For example, smaller school districts may find it more cost-effective to pay tuition to a specialized private school than to hire and train their own teachers. Most districts will fight tooth and nail to keep at student in its public school. Some school districts will keep a student in a regular classroom by providing an aide, some will do anything and everything but provide an aide. It's impossible to know what constraints are at issue during your meeting, but know that MONEY is a huge consideration.

Don't cry
It's no joy hearing a litany of your child's deficiencies, but steel yourself. That's why you are at the meeting. Once you lose emotional control, you are no longer your child's best advocate. Listen, take deep breaths, ask to step outside. Your child needs you to be wise and calm and in control.

Don't mistake anger for advocacy
Raising your voice, arguing, making threats. The people around the table have seen and heard it all. Maybe only an hour ago at the last IEP with another family. You may be tempted, but do not do it. Once you lose control, you sacrifice credibility. If confronted with information you know to be wrong, ask to correct it or to see the source. Don't quibble about irrelevant details. Keep your voice at a conversational level.

If offered services, accept
Many of us realized early on that our children needed special education, but frequently parents are blindsided when summoned to a meeting about their child. "I don't want my child to be stigmatized." "I hate those labels." "There is nothing wrong. She is just creative." Re-read the paragraph about staff expertise. Re-read the paragraph about funding. If school administrators offer expensive services, you can bet your child sorely needs them. Accept the bad news gracefully, accept the services gratefully.


*Individualized Education Plan