IEP

My facebook feed is lighting up this week with picture after picture of kids heading back to school. First, I have to say whaaaa? Caleb just finished 3rd grade two weeks ago, how are you all back in school?? Labor Day is the end of summer, no one should be back in school before the end of summer! You all are weird.

Next I have to say that, in addition to the many happy photos and excited posts about this new year, I am seeing a lot of anxiety and fear. I get that. I’ll be there in a couple more weeks when it’s time to send my little cherub off to a new year with all new teachers for the first time in 2 years! I’m still hopeful that at least one of the staff members assigned to his class will be familiar but I won’t know that for a while yet.

I have two ways I deal with this anxiety. Initially, I immerse myself in books…science fiction or fantasy with happy endings only (my life has enough reality and sadness, TYVM)…so I can stop obsessively picking at the rough edges of my brain. When that tactic begins to fail and the anxiety begins poking through in weird yet strangely vivid dreams. Dreams so vivid that I have to ask my husband which parts of the dreams are real and which were pure dream. (Oddly enough, it’s sometimes the strangest bits of my dreams that are true. No really, someone has designed a penis pedometer. And you are SO welcome for that bit of imagery…I wish I could bleach my brain sometimes. )

When I reach this stage I switch to the next coping mechanism. I go back to picking at the rough edges of my brain but with a purpose. This is when I transform all my fears and my hopes into plans. This is when I start combing through the core curriculum for the 4th grade and figuring out which parts of the curriculum I want Caleb included for. This is when I start creating visuals, breaking down the curriculum into “he can totally do that” and “he’s going to totally try to do that.”

This is also when I pull out and dust off Caleb’s Positive Student Profile, remind myself what we are working towards and then begin bombarding his teacher with all the “you should”s, and “could we”s I can dream of.

This year I’ve done something a little different with C’s PSP. In the past I’ve been very, very detailed and factual. It’s effective…see his 1st Grade PSP here: Positive Student Profile. This year, I decided to ask Caleb’s teacher of the last two years to contribute to the PSP, I’m leaving the factual, day to day school stuff to her…and I chose to introduce my child as I know him.

If you want to read more about PSPs and other back to school crap…Those Freaking IEPs is a good place to start.

If you want to pick through your child’s curriculum, it should be posted on your school department’s website. If not, ask them for a copy.

If you are curious about how I created that document, I used Microsoft Word.

1. File, New.
2. Under “Office.com Templates” I chose a template I liked. (“Newsletters” is a good place to start, but “Flyers” has some cool stuff too.)
3. I replaced the sample text and photos and TADA!)

If you too have a child with fragile X and you want stuff to give your child’s teacher & school staff, but aren’t insane enough to write your own, check out the Back to School Toolkit from the National Fragile X Foundation.

This is every parent of a child with special needs’ favorite time of year (and if you buy that, I have a gorgeous bridge for sale in Boston…the Zakim, you’ll love it!) Every year at this time the e-mails and facebook posts start piling up as we all try to wrap up the school year.

Schools wanting to remove services or change placements are always the most stressful aspects of the IEP process, in my experience, but every step is stressful. There is nothing fun or relaxing about sitting in a room with a table full of virtual strangers as they list all the ways your child is deficient. IEPs are about deficiencies and delays and every way in which your child differs from the “norms” that they use to measure such things. It’s emotionally and physically draining.

There are ways to make IEPs suck less however! The most important and the easiest is educating yourself about the process. You need to know your rights, your child’s rights & you need to know the proper procedures…you cannot rely on school personnel, as nice as they may be, to protect your rights, your child’s rights or even understand the IEP process. You need to know this cold.

Many parents find the entire process mystifying and confusing. I have totally been there on a bunch of occasions! The process is complicated and there are a lot of rules to follow but do not just say, “It’s too complicated. I will never understand it.” It’s that whole self-fulfilling prophecy thing, if you say that or believe that, it will become the truth. You won’t ever understand the process unless you educate yourself! It is not that mysterious once you know the basic rules.

If you can find and/or afford an experienced Educational Advocate or Special Education Attorney, that is awesome. We’ve had tremendous success using an Advocate. BUT hiring an advocate or lawyer does NOT relieve you of the responsibility of knowing your rights, your child’s rights and the proper procedures. You still need to make the effort to get that basic level of understanding down.

My first suggestion is always attending a class, the Federation for Children with Special Needs here in Massachusetts offers a variety of free courses around the Commonwealth beginning with a Basic Rights workshop. Take a course like that at the very least. It costs you nothing but the time and effort of attending and your child is worth that and so much more, right? Right. If you are not from Massachusetts find out what organizations exist in your state: State Parent Training & Information Centers.

Another favorite of mine are the Wrightslaw seminars (2014/2015 Schedule of Programs), they offer a variety of courses around the country. They are not state specific, federal law guides IEPs and state law must meet or exceed those standards. If your state law does not meet the federal standards, it is not valid. These are not cheap courses, the cost varies depending on the length of the course and the group or agency sponsoring the event, but they provide priceless information.  I have never felt more confident in an IEP meeting than I do now that I’ve attended the course. Now my questions center on appropriate goals and services for my particular child because I’ve got the basics down.

If you cannot attend any basic rights course for whatever reason, there are a ton of books and online resources to use. These are some of my favorites:

National Fragile X Foundation:

• Education Resources – This provides links to many, many other sources including books and websites.
• Lesson Planning Guide for Students with FXS – This is good for goals and accommodations.
• Back to School Tookit – There is lots of great fragile X specific information gathered together.

Wrightslaw – This is a great site to use if you have a specific question, the search functionality is great and will give you lots of guidance.

• Books & DVD store – You can order books or DVDs providing training on a variety of topics. (I would start with Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide.)

I can promise you, you will NOT ever regret making the effort and taking the time to get down the basics. It’s not a guarantee that you will never have a problem because schools continue to find new and creative ways to be total jerks BUT it is a guarantee that you will be able to keep them honest while protecting you and your child’s educational rights. The relief that comes from having that confidence drops the stress level of IEP meetings down tremendously. Even if your IEP is tomorrow, you have time to start…but it is easier if you have a little more time.

 

 

I don’t know how it’s possible but it is, once again, time for Caleb’s 3 year re-determination for special education.

For anyone who’s not familiar with the process, every 3 years a child with an IEP needs to be completely re-evaluated by the school district to determine if they still qualify for special education services. I wish there was room for doubt here for Caleb but we all know that’s not the case. As amazing as his progress has been, he’s still not at the level of a typical 9 year old. He will still qualify.

After all the fights we have had with various employees of this district, I’m still suffering from PTSD. When I see an envelope from OSE (Office of Special Education) my heart starts racing and my hands will shake. How ridiculous is that?? I read every line and completely obsess over it. The line item that ALWAYS makes me sweat is the school psychologist’s line. I’ve learned from past experience that they write these things in a very vague manner to give themselves maximum flexibility. Maximum flexibility does not work for me, I need specifics.

I feel like we have a good working relationship with Caleb’s teacher so I always hate to ask questions that might make her feel defensive. I know she isn’t all of those other people. I know this school isn’t those other schools. I still need the reassurance though.

Today I brought up the subject of the tests the psychologist will use. She wasn’t sure what tools would be used to evaluate him but she reassured me that she would be present throughout. I looked nervously at Eric and just went for it…”We don’t sign off on IQ tests…” To which she replied…

“What is this 1950? We don’t use those.”

Uh, what? Really? Because we’ve had two school psychologists in this district who were pretty darned fixated on IQ.

I must have looked confused because she added, “Whatever she uses, I’m pretty sure it will come back non-testable because he doesn’t know her. I’ll be there to make it as easy as possible and I might be able to ask the questions since I’m the familiar test giver, he has accommodations for that. What is really important is what the team members say, we all know him, we know where he’s at. We work with him every day.”

She offered to find out what tests would be used but it was my turn to reassure her, “You know what you’re doing, we’re good.”

It’s still going to suck…we still need to hear all the things he isn’t doing…but at least we don’t have to sit through that, getting beaten down emotionally, only to have to fight every step of the way through the rest of the process on top of it.

As we walked to the truck Eric shared something he’d forgotten to tell me yesterday…Caleb’s teacher is going to speak to the general education teacher to find ways to increase his inclusion time. Again. We are so far beyond “lunch, recess and specials” already that this will just put those bad memories completely in the dust.

I think maybe it’s past time to let myself truly trust his team again.

Caleb has, for a very long time now, exhibited a love of “SCIENCE!” It started with a butterfly unit in preschool and has never really let up. This is one of those things I know would be exactly the same even without fragile X. This boy loves science, he loves the natural world, he fixates on animals and documentaries. Frozen Planet rocks his socks off, Walking with Dinosaurs stops him in his tracks and I cannot even describe the awesomeness of Myth Busters (BOOM!)

When we were writing the IEP that would take Caleb from Kindergarten to First Grade, we tried very, very, very hard to convince them that science would be a better idea for inclusion than math. The team didn’t buy into that and…well…Monkey proved us right.

The new team, awesome as they were, also didn’t buy into Science as a good time for inclusion. We instead ended up replacing math with Writing Workshop which was, in hindsight, an inspired choice. It was perfect for him.

I still thought he should be included during Science though. He loves it, he is calmed by it, he will focus on it. I understood the hesitation because they don’t get to see him choosing documentaries over movies, they don’t get to see him so enthralled with whatever amazing thing is unfolding in front of him that he forgets to eat. Like with many things, Monkey needed only a chance to be able to prove himself. That chance came last week.

Last week Caleb’s inclusion class did a hands on science activity about compost. And this is what happened…

Caleb’s teachers are now planning to include him with future hands on science activities. One of these days I think we might even convince them to let him study the solar system with the class too. Baby steps.