Instead of going to school to submit my book order forms today, I attended a meeting for Ian’s special education program. His school is part of a cluster of programs. I suppose Ian’s school is for the kids with the most minor programs, because I got an earful today from some parents on the edge of a nervous breakdown.
It was a behavior modification class. Ian’s behavior problems are mostly in the classroom, where he’ll jump up, if he’s bored by the assignment. At home, we have no problems as long as I get him to bed by 8:00. It’s all a sleep thing for Ian. But I didn’t really know what they meant by behavior modification, so I went to the class to find out.
The behavior specialist gave us a long list of things that kids could do wrong (hand flapping, fan staring, running into traffic, hitting others) and then told us the key was to figure out what the problem was. Ian didn’t do any of those things, and I regretted blowing off work.
Then the parents started interrupting the speaker and venting. They told stories about being overwhelmed with kids who touched their poop and ran in circles for hours at a time. They were desperate for help in the after school hours when they had to make dinner and watch other children. One woman said that she had already spent $100,000 of her own money on therapy for her two kids. They all advised against lawyers and said to move to one particular town in New Jersey. They discussed the swing in the court system away from parents and towards school systems.
The speaker volunteered that her office regularly gets calls from New Mexico and Florida asking which town in New Jersey to move to. New Jersey has a national reputation for special education.
The venting was more interesting than the speaker, so I didn’t mind too much the derailment of this class. My heart really went out to those families.
Apt. 11d 
My son is now going to a special ed school and we definitely know the pain of the other parents. Sam has severe ADHD, and though he does not hae PDD, his executive function is in the pits. The school he is at now – the Gersh Academy in Glen Oaks, NY is about 500% better than anything provided by the NYC school system. NJ is better at providing services than NYC – he was approved for a non-public school – but the state sponsored ones were inappropriate. We went the lawsuit route – and I have no idea how this will all end.
It is a big gamble – not to be taken lightly. I fear the Freston case will get people excited. Even with my non-public funding order – we are taking a 50K gamble because the state offered us placement in a brand new school which seemed to be housing children who were severely cognitively delayed. We are told we have a great case, but many of the parents at my son’s school were told their case was iffy. We can only be hopeful.
Andrea Peyser wrote an editorial about how special-ed schools (like Churchill) were an upper middle class taxpayer’s boon – but what she failed to point out is that only the upper middle class can play by the rules set up by the Board of Ed and in most municipalites. Outside of school tuition costs (which I now write a check of 5K each month), we have spent over 20K getting our ducks lined up for the legal wrangling to come- and that is with his district’s blessings to remove him from a public school setting.
On the other hand, as far as the parents who want a lot of help afterschool/ after work, I do not believe the state should become a babysitting service for your child. My district will probably be picking up about 60K and special busing (which I do not know the cost) – that is a heavy price for one child. It really sucks to have a special needs child at times – but as my husband says – you have to play the hand that you were dealt. Unfortunately, as a society we cannot have it all.
LikeLike
That’s pretty stunning. I have friends who have a special needs child and their interaction with our school district have been eye-opening to me. This year, the OT was on maternity leave, and the district was not going to replace her during the leave, until parents got after them about it.
LikeLike
Maybe the school district shouldn’t pay for after school help. Maybe it should come from the feds. But someone needs to pay. These women were about to lose it. They couldn’t provide basic functions, like diaper changing and feeding, of other children in the house. The children were running out of the house into traffic. They were injuring themselves. These families seriously needed some support from the government.
LikeLike
Susan has a very good point about special ed schools seeming to be an upper-middle class boon, because only the upper-middle class has the resources to successfully maneuver through the system.
LikeLike
Laura,
Maybe it is time to reconsider institutionalization (part-time or full-time, temporary or permanent) in the hard cases you mention. If one child can make a household grind to a halt, maybe that household isn’t up to dealing with that child.
LikeLike
ack. Institutionalization is a last resort for kids who have reached certain height and weight levels that require extraordinary measures. Institutionalization is a tragedy. These kids may be severely handicapped, but they are still children. They are human beings that possess certain rights. They are loved in a home. They love their families. Parents who are forced to make the discision to institutionalize face unimaginable grief and guilt. In some cases, institutionalization needs to happen, but it must be a last resort.
Middle class boon???!!! The fact that the school systems have made it so bloody difficult to get services is not the fault of the middle class. All families should be receiving it. There is a place in hell for every administrator that stands in the way of poor families with special needs kids.
Why is it that we begrudge these families the resources to function, while we dump endless cash into the cesspool we call Iraq? The priorities of this country are seriously out of wack.
When I get tenure and the kids are older, I’m going to be a crusader on this topic.
LikeLike
Laura,
It’s just that the picture you painted is just so dire that it doesn’t sound like anything short of a live-in aide wouldn’t help, and that even that might not do the job. Aren’t extraordinary measures indicated if a child is running into traffic?
LikeLike
would help
LikeLike
While we’re making a list of areas of government budgets to trim:
1. agricultural subsidies
2. ethanol subsidies
3. S-CHIP for 3 car families
4. non-academic Head Start programs that show no permanent benefit
5. sign up all federal workers (including members of Congress, etc.) for insurance programs providing the same insurance coverage as Medicare
6. lower the paycheck for members of Congress 2% every year they are in office
7. stop insuring beachfront (or other vulnerable) property
And while I’m queen for the day:
1. create national market in health insurance, making it possible to sign up for catastrophic-only insurance in every state in the Union
2. require (as a condition of textbook adoption) that every textbook be scanned and available online to the public.
These lists should be longer, but I can’t think of anything else right now.
LikeLike
Laura, I should hook you up with my friend Judi:
http://www.momathome.com/category/kids/
who is also here:
http://webworkerdaily.com/author/judisohn/
She’s been doing battle with her school district over funding for her daughter’s education, and she has been very activist. She’s also in NJ.
LikeLike
I wonder if there’s something between institutionalization and paid assistance from a health care provider?
In years past the kind of support needed to survive in this situation came not from the government, but from extended family. In general I find myself wondering if the U.S. is trending back towards extended-family setups. Housing is super expensive, so kids live at home so much longer, sometimes even after they’re married … child care is also expensive, leading more people to rely upon grandparents & relatives … the list goes on. Inability to cover sick days for my kids is practically enough for me to invite my mom to stay!
LikeLike
jen,
Presumably the extended family was the answer for disabled or hard-to-handle children for a long time, but then at some point institutionalization became the standard solution. Then the pendulum turned, and institutionalization became a dirty word (remember that piece on Arthur Miller?), leaving the newly nuclear family to manage the best they can.
On a bad day, my typical (?) five-year-old is capable of stomping on my sandled feet in her sneakers, flopping around and bumping into people, and flailing her arms around violently, all the while giggling or saying that she is punishing us for some infraction. Under the circumstances, it’s difficult to avoid being injured and to suppress the urge to use down-home disciplinary techniques. Fortunately, it seems to work pretty well to lock oneself in a room away from her until she cools down. If the spells were longer or more frequent, or if she couldn’t safely be left alone, or if she were bigger than 50 pounds, we’d be in a real fix. I can easily imagine a situation where not even a home aide could salvage the situation, even with a child that size. But I suppose that’s when one turns to better living through chemistry.
LikeLike
jen,
Presumably the extended family was the answer for disabled or hard-to-handle children for a long time, but then at some point institutionalization became the standard solution. Then the pendulum turned, and institutionalization became a dirty word (remember that piece on Arthur Miller?), leaving the newly nuclear family to manage the best they can.
On a bad day, my typical (?) five-year-old is capable of stomping on my sandled feet in her sneakers, flopping around and bumping into people, and flailing her arms around violently, all the while giggling or saying that she is punishing us for some infraction. Under the circumstances, it’s difficult to avoid being injured and to suppress the urge to use down-home disciplinary techniques. Fortunately, it seems to work pretty well to lock oneself in a room away from her until she cools down. If the spells were longer or more frequent, or if she couldn’t safely be left alone, or if she were bigger than 50 pounds, we’d be in a real fix. I can easily imagine a situation where not even a home aide could salvage the situation, even with a child that size. But I suppose that’s when one turns to better living through chemistry.
LikeLike
Institutionalization is far more expensive than having 18 hour a day care – in addition to the reason Laura lists against it.
I have a widowed friend with a 6’2″ 15 year old who is completely non-verbal. She gets nearly round the clock care for him – a specialized school during the day and someone at her home until he’s asleep. He would have been institutionalized long ago at much greater cost otherwise – she simply couldn’t physically deal with him (let alone raising two other kids and supporting the family).
That’s an extreme example. What most parents need is a few months of intensive help on weekends and after school from a certified behavior analyst to 1) teach the child non-disruptive and hopefully productive behaviors at home and 2) train the parents to reinforce these behaviors and parent in ways that keeps everyone sane. Also, IMO, 3) they should be helping the parents understand what the children are learning at school and how to reinforce it. After this is accomplished, they still need some support and occasional respite.
Without this kind of help, the level of stress is incredibly high, as Laura saw. High enough that the state or federal government needs to step in. High enough that, in the last few years, I’ve seen three autism fathers die of heart attacks and several children (whose families didn’t get the help they needed) institutionalized who may not have needed to be if they’d gotten help before things got dire.
It’s a good investment, IMO.
And because I can’t shut up, I’d also like to point out that if the state is investing money in a specialized placement, they’d get more bang for their buck if they invested a little extra in ensuring that parents weren’t unwittingly working against the school at home. Parents make pretty good therapists if they are rested and trained.
LikeLike
Not to mention those frontpage newspaper stories (which I somehow usually encounter in Canada at Christmastime) where a parent of a disabled child murders the child and then sometimes commits suicide.
LikeLike
I didn’t mean to start such a controversy and I wasn’t pushing institutionalization – but theri are some cases that I think it is far better to put the child into a residential school if family tensions are mounting that much. It also brings us to another issue of long term care for the children who are never going to be able to function in society. What happens to them when they age out of the system at 21.
There will always be two categories of these type of children – the ones who will be able to get through their lives independently (though with difficulty) and those that cannot. Most nights I have to go through a one hour all out temper tantrum before he will do his homework. He has a vewry high IQ and can do it in a matter of minutes. Just the idea of doing it brings on a torrent of tears and anger. He hates being outside of the little world he has constructed for himself. He weighs about 90 lbs. He has slammed his door so much that it is coming off the hinges. Does that require an aide? Home aides may be a solution but they have to be for extreme cases. Not because Johnny likes to scream horrible things at mom when she asks him to do his long divisions. (And I do acknoweldege that this is stressful).
We look at our own child and wonder what will become of him. We were in Salem last week and he asked to see the House of the Seven Gables. We also visited the home of Nathanial Hawthorne. Much to my amazement I found out that Nathanial Hawthorne was much like my child. He feigned illness as a child so that he didn’t have to go out and interact with the other children. After college, he refused to come out of his bedroom. For 10 years, his mother and his sister brought him his meals. We would have had him in all sorts of therapies today – and what was seen as eccentric behavior back then (though I am sure they were all worried sick) flavored all of his intriguing stories.
It is an unusual road that we are all on. For some of us, there may well be a great artist or thinker in our children- for others, it isn’t going to get much better and maybe these are the good times. As my husband tells me – enjoy him now because we go to the future with a bit of fear and trepidition.
LikeLike
Thanks for the Hawthorne info. I’m going to turn it into a post. I was just reading a bio of Thomas Aquinas and it sounded a lot like Ian. Photographic memory. Completely and overly focused. He was also very clumsy, which Ian isn’t, but a lot of his buddies are. Thomas Edison was also dismissed from school. The teachers told his parents that he was uneducatable (sp?).
I’m sorry about your struggles with homework, Susan. Even if it doesn’t qualify as needing an aide, I know that it has been really stressful for you.
Sometimes age makes some of these problems waft away. No need to dread the future, yet.
LikeLike
The best predictor of poor life-time outcomes for persons with autism is institutionalization.
More at Natural Variation here: http://autismnaturalvariation.blogspot.com/2007/09/more-on-what-institutionalization-does.html which has links to previous studies.
LikeLike
WSJ had a big article about Jersey and mainstreaming/special schools, and Joanne Jacobs has posted about it. Her conclusion seems right: works for some kids, not for others. http://joannejacobs.com/2007/11/28/parents-against-inclusion/
LikeLike