What is Your School Doing for Your Child?

By Kim Stagliano

It's what we in CT call "PPT" season. That's when we go over IEPs, plan transitions, talk about Extended School Year programs and generally recap the school year. I have the pleasure (insert sarcasm emoticon here) of attending 3 PPTs each year.  My oldest daughter is in her second year of high school. She has two more years on campus and then embarks on the "transition" period that for our district, has been called the ELITE program. And guess what - our SPED and adult transition team has realized early on that the ELITE program, which now has students with Down Syndrome, physical disabilites and other non-autism diagnoses simply will NOT WORK for the four students with autism headed toward adulthood. (Insert shocked face emoticon here.)  The district has invited us parents of high school kids with autism to help plan what their "gap" years will look like. Those are their years between the 4th year of high school which is on campus and the remaining years until age 22 when they "age out" (insert vomit face emoticon here.)  I'm fortunate that they see that autism is VERY DIFFERENT from other disabilities and requires something brand spanking new - cut from whole cloth.  And I'm excited and encouraged to create a working program for my kids.

My middle child is a freshman in the autism room at our high school. She will follow right behind her older sister.

My baby - that sweet kid in the photo above - is transitioning to middle school, 6th grade. Her oldest sister blazed the middle school autism program. There was no program for autism in our district for Middle School in 2007.  Again, the district realized that they had to adapt the elementary program for the Middle School academic format. And they did. 

The device Bella is lying in is called a "steamroller."  It's a deep pressure machine that rolls over the body - and as you can see, my little pal is quite comfortable in it. Temple Grandin talks extensively about her "Squeeze machine." The company that now makes Temple's machine just started following me on Twitter and we had a chat. Their machine uses air pressure controlled by the user.

So what does this have to do with school?  During my PPT meeting on Wednesday, the school alerted me that they were buying a steamroller for the middle school. We had mentioned it briefly at one of our review meetings last winter. And they listened. And spent money! For my kid. I love that. It will be in her classroom and she will have access to its calming effects.

What does your school do that makes your life less stressful and your child's day more successful? And do you think we should get a king sized steamroller for the entire Stagliano family?

Kim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

Comments

[Yvette]

Public schools have completely failed in dealing with or understanding severe autism. They aren't trained or equipped to deal with these children. Mostly, they are warehoused in schools and the parents are expected to attend endless meetings where abstract promises are made and fake expectations are made. Tick. Tick. They clock keeps ticking and none of these special ed professionals ever know what to do and only write what makes them look good on paper so they aren't held accountable for the years of failed autism supports and educational support these kids so badly need.

[Benedetta]

Jan;
I am scared too.

[Jan]

Kim wonderful article.
Andrew wasn't in public school but was educated for the last 10 years of school in a collaborative program. The best thing they did for him was listen to me and work closely with me to design supports that would be of the most benefit to him. he also got to do job sampling starting at 16 and he interned at a farm, volunteered at a food pantry stocking shelves among other things and worked at a local Big Lots store.

The bad and super sad and scary part is that ALL of the hard work in school was for naught. Andrew is rotting in an adult day habilition program with adults age 22 to in their 60s and who have a WIDE variety of developmental disabilities. The program is paid for through Medicaid and is subject to some very rigid and odd rules including a ratio of 1 staff person to every 7 or 8 adults, days spent sitting at a table coloring or doing puzzles and cooking is making instant pudding. It is an unmitigated nightmare!!

Community Based day services on the other hand are better but impossible to get because they are paid for though the state dept of developmental disabilities who has no where near enough money for the few adults with Autism who are there now and who keeps having their budget slashed by the legislature.

I am terrified for our kids future. For those of us who have adult sons and daughters right now, it is NOT a matter of NOT having the right programs, it is a matter of there is no money to even begin to create the right programs. There is also the issue of adult services for the significantly disabled are NOT mandated as school is (IDEA)

Where will the money come from to create adult programs?
I can't seeing it coming from our state or federal govt. Not when the first budget cuts are ALWAYS the elderly, the poor and the disabled. it is sad to say but many in our society today and many in government power consider them the deadwood that need to be cut...

For me and my fellow parents of adults right now it is very parent for themselves. We are forced to fight and scrabble, for every little scrap of funding that we can get for our sons and daughters.

When I was in my 30s and going to his IEP meetings, never in my wildest dreams did I think that in my mid 50s that I would have to be fighting even harder for his services. I don't even want to think of what it will be like 10 years from now.

[Tara McMillan]

I will not ever let my nonverbal child into a public school. It doesn't matter what people think I am denying him, as long as he has Autism, and he is nonverbal, he will always be home schooled. The risk is to great after what has happened to him.
I lost him once to vaccines, I will not loose him again to overbearing teachers or incompetent aides. Abuse is rampant, and I would rather be his teacher and deal with him than to have him somewhere - and me not know what is going on.

[Rick Otto]

Kim -
The real question is - What is your school doing TO your child?
We have been through this with our daughter and were where you are 15 years ago. We fought with our district and were ecstatic when they agreed to aides, accommodations, etc. They impressed upon us the need for academics, but never said a word about the other skills she would need to be successful in life. She stayed on through 21 and went to a culinary school, earned 60+ credits in college and went to school for Cosmetology and got her license, but eight years later she still hasn't found a job.

Everyone knows of the social skills deficits kids on the spectrum have, but equally, if, not more important, are life and executive function skills issues. The ones that make survival as an adult possible if you have the skills and impossible, if you don't. Only you don't need them to get accepted to a college, so the schools ignore them. They are heavy on 'go to college' as the ultimate goal, but you can't be successful in college or adult life without them. Social skills are more than eye contact or greeting the teacher. They need to know how to interview for a job and how to behave with others at work or how to live in a dorm when class is over. Life skills include knowing how to shop for dinner and balance a check book and exec function skills are needed to do homework and plan and organize.

So, what does this have to do with your steamroller? It may be counterproductive for several reasons.
1 - It is wonderful as a stress reliever, but is it helping her prepare for independence? She won't have access to one in her college setting or at work. She can have it in the dorm or at home, but she wouldn't invite her classmates/coworkers to watch her relax from the therapeutic benefit of a hot shower and should keep this private, too. She has to learn to develop coping mechanisms to deal with stress.
2 - Will it become an avoidance mechanism? ASDs are famous for evading things that they don't like or have trouble with. Dealing with them does cause stress, but escaping to the roller reinforces their anxiety and gives them an easy out.
3 - Part of their social skills problem is fitting in with their peers, but having a tween or teen in the rollers will make her seem really weird to her classmates. That doesn't seem to be the result you want. Best of luck.

[Angie]

@JP I'm with you all the way on that one. My son (who was 4 at the time) was changed to another social skills room and when I asked why, I was told I'd be given a call back. It took close to a week to find out what was going on. In the interim, I was told by an aide that there was an "issue" with him and another little boy. My mind raced: Was it my son that caused the problem? Did he get hurt? Was the other boy hurt? Here is what it was:
He and another little boy were running into the back and hiding with toy cars and we felt that since they were refusing to sit down at circle time, they should be in separate classes. My response was "you do know he has Autism don't you?" My kid made a friend and was doing what all other four year old boys do, and they moved him because of circle story time! The IEP plan was for him to initiate play. NUTS! My sons are home schooled and it seems to have benefited them so far.

On a lighter note, I do hear from parents (sometimes) that are supported by their district and I am glad for them. I am happy to see that some really good sensory equipment is being brought into a classroom to help with calming. This is awesome for little Bella.

[Stagmom]

Chantal - SouthPaw Enterprises OT catalog!

[chantal Sicile-Kira]

Kim, where do they get the roller, we could use it in our family!!! (And not just for Jeremy).
Chantal

[AutismGrandma]

Post Re Office of Civil Rights and Special Education PreSchool

Re: "What does your school do that makes your life less stressful and your child's day more successful?"

My daughter attempted to place her son in the "Special Education Pre-School", but it resulted in MAJOR disappointment since he could not handle the situation even for just the one-half day of four hours, 4 days per week. He was spacing out, losing his balance and even falling down due to his inability to handle the chemical exposures, at times resulting in major emotional meltdowns. My daughter provided all of his medical records demonstrating his Chemical Sensitivities as well as autism, and had continual conversations with school personnel regarding his reactions to perfume and fabric softener etc., however the Special Education Program Supervisor claimed that it was impossible to request that his teachers and therapists avoid these chemicals on themselves...."Insurmountable issue to require teachers to not wear perfume" (Sarcasm Face Here)

My daughter drove her son to school and back every day due to his flight risk, which she also clearly explained to everyone involved. She was promised that her son would have his own "shadow" aide to remain with him, however when she arrived one day to pick him up, there was no aide with him so it was a miracle that he didn't bolt out in front of the cars and buses in the driveway, or run off un-noticed in the midst of the chaos of all the kids boarding buses etc. After ZERO cooperation and major negative attitudes from this Special Education Supervisor, who apparently thinks that she is "God" due to her statement that my daughter's son "is NOT a flight risk" and therefore does not require a shadow aide, it was not worth risking his life to keep him in this school. The chemical exposures alone were creating high risks to his welfare, but he definitely could not survive a BUS running over him. (Horror Face Here)

After 4 months of lack of cooperation, and no advancement in his learning, he was removed from school. After 3 years of no speech, he was speaking again thankfully, but he still didn't even know his name. I guess his speech therapist didn't focus on that for some reason, so I taught him that myself by pushing him in his swing, back and forth, and saying his name over and over again in cadence to the rhythm of the swing, until after about 30 minutes finally he said his name. So what the school couldn't accomplish in 4 months, I did in 30 minutes. What's wrong with this picture?

My daughter has applied to get her son in-home speech therapy and ABA therapy, however this has to be accessed through the school system, therefore we withheld the complaint that she was going to file with the state Office of Civil Rights, in order to avoid "rocking the boat". He has another IEP scheduled for next week, but according to my daughter's recent conversation with the same Special Education supervisor, if we don't get some cooperation, my daughter will probably have to file a complaint with the Office of Civil Rights after all. (Frustrated Face Here)

However, if it takes the Office of Civil Rights to get educational and therapy support for my grandson, I have no doubt that they can make it happen. (Happy Face Here)

[JP]

Nothing because I would NEVER allow my autistic child in a public school program. Public schools, IMO, have no idea how to educate children on the spectrum and waste year after year. They create these programs that are a joke and have no clue to ABA. Private ABA center all the way.

[Rick Otto]

Annette -
To have his way? If abuse or assault was suspected, the police should have been notified and they should be notified, even now. The school was negligent waiting 100 days and should have separated them immediately.
The teeth may have been reimplantable - at district expense.
The situation warrants suing the school and, if your child is unable to return to school (fear and anxiety about returning, indicated by nightmares, diet issues, fear of going out, etc.), he is entitled to have instruction at home until an appropriate setting can be found - at the district's expense.
Your state Dept of Ed should have a compliance office which can get in their faces from the top down and the US Dept of Ed has the Ofc of Civil Rights to investigate cases where civil rights were violated.

[Kristine]

I cannot even discuss this topic without sending myself into a rage. Let me just sum it up by saying: they do nothing and I now homeschool, which is not my pleasure.

[Not an MD]

Hi, Kim! In answer to your first question: "What does your school do that makes your life less stressful and your child's day more successful?" Hahahahahahahahahaha! Sorry, I can't stop laughing at that one. I have no answer. I was just asked by someone at the school if one of my kids could have ice cream at the end of year party. Mind you, my kids have been GFCF for years now, and I would think my answer would be obvious to someone who has 1. read the IEP, and 2. cares. I guess I need a sarcastic emoticon.

As for your second question: "And do you think we should get a king sized steamroller for the entire Stagliano family?" Perhaps, but perhaps what might be better is some serious Rolfing sessions with a licensed massage therapist. I know that is what I need and want right now as I type these words. I need a massage so badly........ and before summer vacation begins, too. That, and some chocolate covered almonds like LJ likes, although I insist upon caramel in mine.

Sorry to say I am not happy with the school this year for the first time, and for many reasons, not the least of which is the reading program which encourages prejudice toward others and feelings of inadequacy in the classroom, and so much more. It is a new school this year, and I do not like the new school where all the new professionals don't seem to know anything about nor care about my children.

[Terri Lewis]

Well, let's put it this way: lots of people have tried, but where we live. . .we've done a lot of home schooling and "home instruction" (the school supplies materials and a tutor, but that didn't always work out too well).

Sometimes in school for half a year, then back at home for a few months, then looking, looking.

In the fall. . .we finally found an appropriate place with a classroom (5 kids, including ours) of similar kids. In our case, that means bright kids on the autism spectrum who still have autism-related behaviors.

The only catch: it's about 30 minutes one way, but still. We're hopeful again.

[cmo]

In a side note today, Fox says only 38% of girls are getting all three of the Gardasil shots after taking the first shot.

http://www.foxnews.com/health/2012/05/18/fewer-girls-completing-all-three-hpv-shots/

Once again, the Fox story shows a picture of a needle with "air bubbles" in it... which can cause a pulmonary embolism and sudden death. This would likely mean a trip to the "Vaccine Court" in Washington DC as the matter would be a part of the "liability free" US vaccine program.

[Benedetta]

Annette Flynn
I am so sorry. This Aide is still working and your child has lost his adult teeth.

I hope you have a law suit pending and you sue this school system big time? Because they did not even care enough to get rid of this Aide who would damage a child for life.

Real steam roller - serious situation but never the less I laughed!

[Vicki Hill]

I'm so glad to hear that schools are coming around on this! So many times I've heard "this program works for people with all disabilities". If there was anything good about the study on outcomes published in Pediatrics a few days ago, it showed that no, people with ASD do NOT have the same outcomes as people with other disabilities. So many of our older kids with ASD were crammed into programs that just didn't work for them.

[Annette Flynn]

What is my school doing for my non-verbal child? First they allow a male Aide to bring him into a room alone to have his way with my child resulting in the removal of his two adult front teeth. Next, they take 100 days to finally agree to have him removed from such Aide and transfer him to another class room with a new teacher and Aide where only under extreme emergency would there be any contact between the Aide and my child. A few weeks later we visit the school only to find our son having lunch being supported by this Aide. The only way he will be going back to that school is with me driving a real steamroller!!!!!!