Ok… so I haven’t been a faithful blogger for the last couple of years. Here is my chance at redemption: http://www.stimsandstones.wordpress.com
This summer we are frontloading by tent in 19 National Parks, 3 State Parks and a ton of smaller sites (museums, whitewater rafting, diving and campfires) over the course of a month. This is the most ambitious trip– and curriculum frontload we’ve ever done so wish us luck! and tune in to Stims and Stones!
Monumental!!
Doug C. Vs. Hawaii rules (in essence) that the right of the parents to participate in IEP meetings/development is more important than the school’s need to meet the deadline for IEP annual reviews. (Happy Dance!!)
Well worth reading this Wightslaw analysis even if you’re not a geek: http://www.wrightslaw.com/law/art/dougc.hawaii.pwanalysis.htm
The Court explained that procedural violations that “infringe the parents’ opportunity to participate in the IEP formulation process, clearly result in the denial of FAPE” (*FAPE is Free and Appropriate Public Education)
While the case centers around the scheduling of IEP meetings so that parents can participate in the meeting– the ruling is clear that parents have a right to participate in the “formulation process”– which in my interpretation (am not a lawyer– just a geeky mom) also includes the right to help write the document.
Last year my work was taking me out-of-town every week, my son’s intervention specialist (IS) was going through chemo therapy so our schedules just didn’t allow us to work on his IEP together… not malicious, not that either of us was playing games; our schedules just didn’t match up. We got to a week before the IEP annual review was due and we believed we were meeting with his IS to work on the IEP and the school ambushed us– they tried to push through the rough draft we had been working on by email. It was really rough… and we refused to sign it. They threatened to implement without our agreement and we basically dared them to do it. To make a long story short– we found a work-around and bought some time to finish working on the IEP so it all turned out fine. But, thanks to Doug C. Vs. Hawaii this won’t happen again!
Too many people– parents and school staff alike– are under the impression that an IEP “expires”. Let me be clear– Individual Education Programs do NOT expire. Seriously– read the Individuals with Disabilities Education Act (http://idea.ed.gov/). They do NOT expire!
The law requires that IEPs be reviewed at least once a year and be changed as needed. That’s all. The law doesn’t require a re-write… the program does not expire. So– the annual review is a procedural issue and Doug C. Vs Hawaii says clearly that the rights given by IDEA get priority over proceedural timelines.
From Wrightslaw analysis:
“The Court discussed the balancing of two options, i.e., including the parent versus meeting the procedural timeline. There are two primary purposes of IDEA. The first is to prepare the child for “further education, employment and independent living.” [See 20 USC § 1400(d)(1)(A)]The second purpose of the law is “to ensure that the rights of children with disabilities and parents of such children are protected.” [See 20 USC § 1400(d)(1)(B)]”
“When confronted with the situation of complying with one procedural requirement of the IDEA or another, we hold that the agency must make a reasonable determination of which course of action promotes the purposes of the IDEA and is least likely to result in the denial of a FAPE.”
“Under the circumstances of this case, the Department’s decision to prioritize strict deadline compliance over parental participation was clearly not reasonable.”
I am SO excited about this ruling– not only because I feel vindicated– but also because this gives families legal grounds for our objections to being excluded from the IEP process. Granted that generally speaking, parents aren’t the experts in education, in education law or in procedure– but, we are the foremost experts in our own children and have the legal right to have a say in our children’s educational plan.
Thanks Doug C.!
* Pete Wright is a Special Education Attorney. I am not. I encourage you to read this ruling for yourself and visit www.wrightslaw.com — go to one of their trainings… And don’t assume that everything you read on the internet is true! My post is to the best of my knowlege… but, I’m not a lawyer so do your own reading/research.
I read a great blog about how families of special needs people are always in fighting mode:
“I think people wonder why special needs parents stay in fighting mode. It’s because if we let our guard down even for a day, we miss something. Sometimes it’s something big. Or something as simple as our family getting to swim together in a community pool with our son safer by use of a floating vest. Our “fighting” isn’t fighting as much as it is just doing what we do. Or doing what we have to do.” http://supportforspecialneeds.com/2013/06/28/why-special-needs-families-stay-in-fight-mode/#comments By Julia Roberts
It got me thinking about the many fights we’ve had since our son’s diagnosis… He doesn’t have a modified curriculum on his IEP! Keep that little bully away from him! Don’t send him home– give him accommodations! You receive Federal funds– you can not exclude him! He’s not going into the multiple disabilities classroom– he’s going into general ed! And the list goes on… some fights I’ve handled well; others like a rabid mama bear. Some fights I’ve won– others have thrown me on my butt in a puddle of tears. But we HAVE to persevere.
I love the Samuel Johnson quote “Great works are performed not by strength but by perseverance.” But, I do believe that sometimes strength is needed… we have to be strong enough to get up in the morning and go head-to-head with people who are afraid of our kids or are too lazy to work toward our high expectations. We have to be strong enough to learn the law and use it. We have to be strong enough to keep on believing that our kids will reach their maximum potential when everybody around us only sees the disability.
Our children need to know that they are “good enough” to do what others get to do– they need to know that we’ll fight for them– that they are worth it! That we don’t give up– we accommodate.
Some of us fighter parents create organizations to include their kids when the mad hits (Ohio Adaptive Sports for example) others hire attorneys and some just pay for the private lessons when their kids are kicked out of group swimming lessons at the Y. (And wait to rub swimming medals in the faces of those who excluded our kids.).
I believe that every generation of fighter parents weakens the walls that our kids have to face. I want to be a fighter parent who helps clear the path so others have lesser fights.
Yesterday I had the opportunity to meet two young teens with autism and their parents. Both boys were very friendly, engaging, funny! But…
Although both of these young men are more verbal than my son and both have better coordination, they are both are allowed to use autism as an out. Their families make excuses for them and accept things that society finds unacceptable.
One of these teens has hygiene issues. His grandmother, who he lives with, is frustrated and wants him to bathe, brush his teeth, stop picking at his pimples… but, “he has sensory issues” so he “can’t”.
The other teen interrupts constantly, is physically aggressive (because he doesn’t know his strength not because he’s mean or an intentional bully)… but, he has autism and “can’t control it”.
Disclaimer: I am just a mom. Every child with autism is an individual. I’m telling you what works for us– not making recommendations for your kid.
There is no “can’t”. There are accommodations, modifications. There is creativity and patience. Whether we like it or not, people with autism have to live in a world that is uncomfortable and unforgiving.
hygiene: Sensory issues do make it difficult… how do you get a child who gags when a toothbrush is put in their mouth, to brush his teeth? How do you get a kid who has poor self-control to not interrupt? We’ve done it slowly, consistently and creatively.
J used to gag with a regular toothbrush– so we used the baby toothpaste and brush for years (you know the kind– they’re usually blue, soft rubber bristles, fits over your finger like the finger of a glove). When he discovered Sponge Bob (around age 7-8) he made the switch to a little kid Sponge Bob toothbrush and toothpaste. Finally, at age 13 (when being a teenager was a big deal to him) he switched to a tween toothbrush and matching toothpaste– mild mint. We used his interests and peer pressure to get it done. It’s taken 13 years– but he’s done it!
We’re still not “done.” J hates falling water so showers are out of the question for now– but, baths aren’t. Puberty is already here and swim team is coming this fall so he’s going to have to learn to take a shower this summer.
Lotion, ointment etc. don’t feel good to him– but, girls don’t like zits… and Stridex isn’t a cream. We’re still working on deodorant… haven’t found the right smell yet but we’re working on it. He doesn’t consistently use shampoo but we have an ongoing deal that he can keep his hair long if he keeps it clean so the threat of a haircut usually gets it done. He chooses the lesser of two evils.
Manners: This has always been a big deal in our home. We stress treating people the way we want others to treat us, we say please and thank you. We ask rather than demand. We do not interrupt.
When J was younger we used to stop the conversation and teach him the right way to get attention (“excuse me”, wait to be addressed, ask your question or make your comment) and praise him before returning to the conversation. From there, we would just say “manners” and continue our conversation until he did it appropriately and now, the raised eyebrows do the trick. It’s not a mastered skill but the frequency of interruption is so reduced that it’s not an issue anymore. Please is required to get what he wants. Thank you is required before moving on.
These skills will keep him out of trouble. Polite people do get what they need more often than the rude or demanding. It helps us value others and shows respect for them. Teachers, therapists, secretaries, cashiers, lifeguards and peers respond much better to polite people. Having good manners helps people forgive the bad days as out of character rather than something that is punishment-worthy.
I know I’m oversimplifying things here. But, the mentality of “can’t” because of autism is what dooms kids with autism to a life without reaching their own maximum potential. Life can be very uncomfortable for those with– or without autism– but, if we use it as an excuse, if we let our kids accept that they “can’t” then they won’t… And, that’s unacceptable!
My son “learns differently.” He struggles with auditory processing and has ADHD so, paying attention to a lecture is kind of a challenge. He also benefits from having a foundation to build on– learning new info without a foothold is pretty hard.
A few years ago we started “front loading” academic content standards so that our son would better be able to understand what his teacher was talking about. We believe that he learns best when information is layered. So, we started by going to museum exhibits, reading fiction (Magic Tree House series is GREAT!!), doing experiments and watching DVDs (Bill Nye, Disney Educational, IMAX, Discovery…) We haven’t had a vacation just for fun in about 8 years… but, we have had fun on our educational trips.
I’m not an expert and won’t advise anybody else on how to do this– each kid is an individual and learns differently–so all I can do is tell you how we do it and what works for one kid with autism.
Academic Content Standards:
So– we download the academic content standards from the Ohio Department of Education website– http://education.ohio.gov/Topics/Academic-Content-Standards/Science (these seem to change every year so, we check at the beginning of the summer). Then, we get the chronological order that it’ll be taught from the school and get the textbook* that we use as a guide for our work. Having the chronological order helps in case we don’t get it all done over the summer– and we rarely do!
*Recently J’s science teacher figured out that he is better able to follow along with in-class reading if he has audio of the text as well as the book so, I record mp3 of the textbook– one file per page and put it on his flashdrive so that he listen to it on his computer at school.
Exhibits:
Based on the Standards and the textbook I go hunting for museum exhibits and curriculum guides that go along with the exhibits. (Smithsonian is GREAT about this!! http://www.smithsonianeducation.org/educators/ they have online exhibits, curriculum, field trip guides, etc! Great stuff! And, my sister lives close by so DC has been a 2-3 times a year trek for us.) Museum and zoo memberships can be a big savings– we’ve found that we go more often when it’s already paid for.
Projects:
For the last two years we’ve done big summer projects– last year it was a documentary about Humboldt Penguins, this year we’re doing a documentary about the water quality in Lake Erie. Museum and zoo memberships really cut down on the cost of visiting these places… last year we were at the Akron Zoo at least once a week all summer and used the membership to get discounts for the penguin encounter, breakfast with the penguins, etc…. you get the idea.
J is all about making movies– and it really impresses his “neurotypical” friends… Making documentaries also gives him the opportunity to work on academic and executive function skills: research, writing, reading, organization, planning, etc. So, while he’s doing a project that the girls will OOOO and AHHH over, he’s working on some pretty important skills that help him achieve academic competence– even excellence.
Before you go accusing me of being a tiger mom, let me add that we have fun together. I’ll write more details about this summer’s project in another post but let me tell you that last week when we made our first trip to the lake (1.5 hrs away) we hung out and played in the water, went searching for the nearby lighthouse, talked McDonalds into giving him an extra happy meal toy (THANK YOU!!) and he had sole control over the music. We did gather the water sample, made notes about our observations of the beach area, shot video and noted the GPS position– but it wasn’t just about the project.
Experiments:
This summer’s project requires weekly experiments to determine pollution levels in Lake Erie– but even last year, we picked an experiment a week from one of those books that uses everyday items that most of us have around the house anyway.
Workbooks and Reading:
J is also doing two worksheets a day (word problems and writing skills for last year’s grade level– because these are his two weakest areas) and once a week we’re doing “History Pockets” to front load Ancient Civilizations (It’s designed for grades 1-3 so it’s pretty easy but creates the foundation for future learning and has a pretty good list of vocabulary words and we follow it up with a subject appropriate History Channel documentary.)
In previous years we’ve read the Magic Tree House series and it’s been front loading social studies as well. But since J has reached grade level reading (Whoo Hoo!!) we’re now reading fun, age appropriate stuff… currently James Patterson’s Middle School series. The goal is to increase stamina and fluency so he’s reading aloud and increasing the duration by a chapter a week– un-scientific but functional.
It’s time-consuming and makes me so thankful that I have a flexible work schedule (most days) and that my husband is a teacher and has time over the summer to help (in between working summer camps and tutoring). We are really fortunate to have time to do this with our son and we have seen his skills increase as well as his earned grades (he is graded– per his IEP– based on performance not perceived ability).
So– that’s what works for J. I feel like I should put a disclaimer in… I’m not a teacher, psychologist or therapist. I’m just a mom who (with help from teachers, psychologists and therapists) is learning how my son learns and working within those parameters to help him reach his maximum potential.
I’ve done a lot of online digging about autism and scuba. There seems to be some pretty violent opposition to teaching kids with autism how to dive… well… I disagree.
By saying categorically that people on the spectrum can’t/shouldn’t scuba dive they are being put into a box that they don’t deserve. Every person on the spectrum is an individual and should be treated as such.
My son is learning to dive. There. I said it. He has classic autism and he is learning to dive. He likes the silence underwater. He likes the feel of water on his skin. He likes the weightlessness, the freedom and the absence of crowds. He can’t talk underwater anyway so it’s not expected of him. Really… it’s paradise for an autistic kid! So why not?
So, J and my husband are doing this really slowly. He has taken “Discover Scuba” 3 times in a pool and now and is about to start the classes. Because he learns “differently” the classes are going to go pretty slowly– with front loading in advance– once a week for about 6 weeks and then another 5 pool sessions before open water certification. And– because of his age he will become Junior certified which means that he won’t be able to dive without a certified adult.
There is plenty that could go wrong… but, there is plenty that could go wrong with any person who dives. I don’t believe that the risks are any greater for J so long as this is done at his pace– and in a way that suits his learning style.
J wants to be an “underwater movie maker explorer who tells people to stop bullying the ocean”… but, he doesn’t want to travel– or move anywhere outside of landlocked Ohio. He’s 13 so things could change– probably will change– but for now, we’re encouraging him to pursue his interests. And, he’s interested in scuba diving.
I just realized it’s been two years since I’ve written anything much on this blog… if anybody is still watching– I’m sorry.
When the nightmare that was 4th grade (see that post) finally settled down and J started getting a real education– I felt like I couldn’t let up… like I just couldn’t turn away for a minute. Maybe because I still don’t trust that this school district won’t try to move him into an MD class– or maybe because J needed to prove their repeated insistence that he “couldn’t learn past 2nd grade” so very wrong. Maybe just because it still makes me angry… but, the good news is that he really got taught the academic content standards in both 5th and 6th grades!!
He is getting good grades, learning to talk to girls (J’s personal goal for speech therapy), getting ready to join the swim team in the fall and getting scuba certified this summer– in addition to frontloading social studies (mostly ancient civilizations) and making a documentary about the water quality in NE Ohio.
I don’t know if it’s the sensory deprivation under water or what but, he loves swimming! He’s already done the PADI Discover Scuba class twice and did really well… He researched Cousteau, and Disney Oceans is still in his top 10 (although the animated movie du jour is Monsters Inc.) Maybe I’ll write another post on scuba and autism… but, I make no promises!
J makes movies all the time (last summer’s Humboldt Penguins Documentary was really cool!)– and power points that do things I didn’t know that program can do!– I loves this stuff– and, he’s really good at it. He loves science and wants to learn about ancient civilizations– so, we’ll do MOMA’s Egyptian wing, read some books, watch some movies and do some projects.
We’ve always supported J’s interests, made lots of museum visits and worked to expose him to interesting subjects and places… but over the last two years we’ve been much more focused on helping him create files to put new materials in– giving him a foundation for learning the general education curriculum. Maybe I’ll write more on “frontloading” another day… again, no promises!
It’s going to be a busy– and fun summer! We’ll get to play in water, read good books, go to some neat places… he’ll get to see a ship wreck in lake Erie, enjoy a silent world that doesn’t drive him crazy and we’ll find some time to spend with friends.
Before the accusations that I am a “Tiger Mom” start flying let me tell you– He LOVES this stuff! We firmly believe Temple Grandin’s edict that “we must keep them engaged.” And, we believe in IDEA’s mission statement– everything we do needs to prepare him for “further education, employment and independent living” so, we’re off and running Monday morning.
My mother in law’s behavior toward my son changed when he was diagnosed with autism 10 years ago… I’ve tried for years to just ignore it… I’ve tried to pretend that it doesn’t matter and for a long time that worked. 5 years ago another grandchild was born and now it’s all about Charlie.
In an attempt to laugh it off we started a “Charlie Jar” where we deposit $.25 every time she mentions him and that had been filling up quite nicely until she quit calling or returning calls a couple of months ago. She’s still posting old lady nonsense on Facebook so we know she’s alive… and she recently let it slip on FB that she’s spending the summer with Charlie (We figured that was worth a whole $1 in the jar since it’s in writing… ) so I guess that explains the communication blackout.
My son doesn’t want to see her. He hasn’t seen her in over 2 years and she hasn’t called him in about 10… I don’t blame him for not wanting to see her… She obviously doesn’t want a relationship with him. I’m done.
Can I unfriend her now?
If you’re anything like me, you’re tired of fighting for your child’s rights to be enforced… Year after year fighting for the law to be followed wears on the heartiest… on the stubbornest… on the parents of children who need special education services. We get tired of having to educate educators about the legal definitions of terms like “general curriculum”, “least restrictive environment”, “accommodations”, “modifications”… and the list goes on.
I think what irritates me most is that there is a pretty good law out there already– The Individuals with Disabilties Education Act– but it’s not being enforced.
Please sign this petition: https://petitions.whitehouse.gov/petition/enforce-individuals-disabilities-education-act/shvRJcx2 asking that the Federal Government start taking this law seriously and start enforcing IDEA.
If we can get 25,000 signatures by August 10, we will get a response from the White House. That’s how the “We The People” petitions work. Will you help me get the attention of the President on this very important issue? Please forward this link, post it to Facebook and Tweet at will– https://petitions.whitehouse.gov/petition/enforce-individuals-disabilities-education-act/shvRJcx2
Our children deserve a chance to pursue further education, employment and independence.
Thank you!
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