Back to what now?

Back to what now?

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.”

4th Grade Social Studies 4th Grade Science

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.

Caleb Welin, grade 4_Page_1(thumb)

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 “ 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.

It is IEP season, let’s make them suck less!

It is IEP season, let’s make them suck less!

Leonard P. Zakim Bunker Hill Bridge, Boston, Massachusetts
Leonard P. Zakim Bunker Hill Bridge, Boston, Massachusetts“by rolando000 is licensed under CC BY-ND 2.0

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:

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.

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.



All is still not exactly perfect.

All is still not exactly perfect.

Eric and I had an interesting IEP meeting yesterday. We are still having meetings every 4-6 (mostly 6) weeks, per his IEP, even though I’m not sure we need it now. Things have been going so smoothly with his team. We love his teacher, the aid, the specialists and the school. LOVE them! The communication we have with his teacher is terrific. If something is going on that we should know about, we hear about it immediately. Plus we get tons of cute stories.

Let’s start with the good stuff…

1. They are all so impressed with how social he is…he’s a social butterfly this boy…

2. They are seeing how much better he performs when he’s in a group with peers rather than 1:1 with staff…one example…the PT struggles to get him to demonstrate skills for evaluations even though he uses many of the skills in Gym class as part of games.

3. He is more motivated by real world activities than table top activities. Example, he will unsnap his own coat with much less whining that he will unsnap the snaps on the manipulative his OT has been using. Notice I said “less,” he’s still not a huge fan of those fine motor activities.

4. He *loves* his Assistive Tech specialist now that they have switched to an iPad rather than that VantageLite he hated so desperately. And he’s using it with much less resistance.

Most of this is pretty standard FX behavior and  so we were able to share some ideas that we’ve picked up from other FX parents.

The BEST part of the whole meeting is that since he is demonstrating how well he does with typical peers, they’re going to start integrating typical peers in some of his pull outs. Anytime I hear this it gives me warm fuzzies…I do so love any effort to involve his school community and peers more! It really makes the first 5 years of struggling to maintain integration totally worth it.

Now…the not so good stuff…

He’s struggling emotionally. We are investigating the why but for the last month or more he’s been crying at school more and more often. And the bouts of crying are lasting longer. It just breaks my heart to hear that, especially since they’re trying so hard to find out ways to break him out of those episodes but the old ways just aren’t working. He’s not responsive to his peers during these times and his teacher and class aid also can’t bring him out of the funks. My poor baby.

We have theories…lack of sleep (he’s been having nighttime wake ups again) or anxiety (I hate this part of FX!) top my list but they are doing an FBA to see if they can pick out a pattern.

The sleep thing is really just a theory. We have no idea how often he is waking up since he’s now staying in his room to avoid setting off the motion sensor which wakes up Money (and sometimes Daddy) which results in an immediate return trip to his bed. Smarty pants. In the car on the way to work I mentioned maybe we should do a sleep study but…yeah…I’m not ready to sign up for that torture! I recalled that a neighbor had used an app once to track his sleep on business trips. After a little investigation, Eric found one that will work on C’s iPad. We hid it under his sheets last night (it works by sensing movement). We will be getting graphs like this from it every night.

After a few days of collecting data it will be calibrated to him and his movements and we’ll be good to go for collection purposes. This one doesn’t look too bad, it looks like he fell asleep pretty quickly and slept until just before 5 this morning. He did not go back to bed then, he got up and it kept running until we shut it off.

As for the anxiety…we’re probably going to go back on the Celexa. I’m a little disappointed, I’d hoped that the study drug would be enough but it’s not at this point. I know all the researchers keep reminding us that the best treatment will likely end up being a cocktail but my ever optimistic heart really just wants the magic pill still. Damn it.

I feel OK overall about where we are at. Caleb’s language in particular has made huge gains over the course of the year which is so exciting. He’s doing really well on his speech goals, even the one his ST looked back on and thought she maybe shouldn’t have included because it was pretty ambitious, lol. And even though we do have this pretty significant issue of his emotional state, we have some good ideas to try. We have his 3 year re-evaluation next month so we will touch base with the team one more time before the year is out to see what we can figure out.

So, nope, my life still isn’t perfect *sigh* but we’re still reaching for it!

The dreaded three year re-determination.

The dreaded three year re-determination.

Image from: Shut Up About Your Perfect Kid
Find more funny IEP goals at Funny IEP Goals: Laugh Your Behind Off in 15 out of 15 Opportunities

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.

I forgot the very BEST highlight!

And really, it deserves it’s own blog so it’s all good.

During the meeting I was brought to tears by one of his teacher’s comments. I no longer even remember what lead up to this exactly but his teacher was commenting on how they keep pushing him and challenging to do more when she said this…this was her explanation…

“Because he can do anything. Anything.”

It wasn’t fluffy BS, it came out just so matter of fact…as just a throwaway…like everyone knows this.

I will never forget how I felt when I heard that. I cannot even tell you how ((fucking)) mind-blowing ((Sorry, I’ve been trying to be good that gets an f-bomb.)) it was to hear those words coming from his teacher.

I can say now that the entire nightmare of his kindergarten year IEP, the fights, the tears, the raging anger…every second was worth it to get here…to this school where everyone just knows that Caleb can do anything.

And right now my dad is shaking his head because he has been telling me my entire life. “Things always work out.” I can be a slow learner.

No one pass out, this is an actual update about CALEB!

Last Thursday we had an IEP meeting, another of the team progress meetings we’ve been having every 4-6 weeks for the last two school years. It’s taken me a bit to get this all together, what with our magical Elf guest and last minute Christmas preparations but may I present…

Our quarterly report.

First, I have to start with this…the PRINCIPAL came. As soon as she came in I immediately thought, “Oh, ship.” BUT there was no “Oh, ship!” She came to observe and learn more about Caleb. We’re not used to having “admin” (to use KQ’s term) come to our meetings unless they’re there to cheese us off…it was nice to have someone come just to be there. It goes back to that whole making us feel like part of the community thing that she does so well. Love it.

Anyway, the meeting was shockingly predictable. Caleb rocks, he’s awesome and funny and sweet and everyone loves him sososososo much. Also, he’s smart and manipulative (in funny ways) and putting the smack down on his goals. Come on people, tell us something we don’t know. Sheesh.


There were so many awesome moments during the meeting…the highlight reel includes…

  1. They’re no longer using that stupid Vantage Lite which Caleb has always, always, always hated with a passion. They’ve given up. We suggested it might be time to give it up last spring and they now agree.
  2. He’s now using an iPad for a communication device and loves, loves, loves it. He’s motivated by it and USING it. His assistive tech specialist told us, “He’s happy to see me now!” He used to tell her “good-bye” every time he saw her and now he greets her. Yeah, he REALLY hated that device. For those who are interested, he’s using TouchChat ( as the app, the teacher likes it more than Proloquo2Go. It’s $149.99.
  3. He’s been more social in the last few weeks. We’re seeing this at home too, he’s hugging people and greeting people he hasn’t in the past.
  4. He’s participating more in circle time. He is calling out answers to questions, and they’re on topic. (Ex. Today is Dec. 20, so the kids were figuring out how to make 20 with coins…Caleb suggested 20 pennies!)
  5. During his share times he is now looking at the kids who are raising their hands and calling on them rather than blindly calling on his favorite peers. He’s calling on kids he hasn’t ever called on before (who are raising their hands.)
  6. One of the goals that his ST was totally regretting writing (she didn’t think it was even possible and was questioning why she thought otherwise)…he’s making AMAZING progress and it close to completing it. Which only means we will write a newer, harder one but do NOT tell him that!

Pretty cool, eh? Before he heads back to school we will be buying him a “work” iPad for his communication. He’s going to be SO bummed to find out “Angry Birds” isn’t work!

Dunkin Donuts, revisited

Last Monday I mentioned that Caleb had taken a “field trip” to Dunkin Donuts while at school (“Um, we have to tell you something.“) I know for parents of typically developing kids this sounds like a complete waste of school hours but those of us with kids with fragile X know that real life experiences are better teaching tools at times than 1:1 instruction. SO, we have no problem whatsoever with these trips.

Yesterday, they did a repeat trip but this time they did an amazing job of tying this in to Caleb’s IEP goals.

Yesterday, they didn’t go just for themselves, they took orders! Caleb had to visit all of the first and second grade classrooms and take the teacher’s order. He did the asking, the teacher wrote the order down for him. Once they had all of the orders, they went to Dunkins.

After one brief misfire, when Caleb tried to order lettuce (that’s a Subway thing), he proceeded to place the entire order with the cashier. There was no line so the cashier was able to take the time to slow down and listen to him and she was able to understand him! He paid the bill, in cash and then they returned to school and delivered the drinks.

How awesome is that? He did a fantastic job and it hit on math, social skills and speech all in one trip. They also noted that he “did better” at sharing the munchkins they brought back to the classroom…I’ve played that game with him before and gotten nothing, the kids are more persuasive apparently.

I’m thinking maybe we need to work on this skill at home, it’s important that skills be generalized beyond a school setting, right? Which means, I get educational Munchkins…my very favorite kind! Mmmmmm…learning….



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.

Those freaking IEPs.

I think one of the most stressful parts of having a child with fragile X is the whole IEP process. Obviously, we invest a lot of emotion in this process because these are our babies, our prides and joy and we want nothing but the best for them. Then we are thrown into this mysterious and bureaucratic process where we are being asked to trust total strangers to determine the educational fate of our children. We are turning over our kids to this *machine* for 18 years in many cases. It is asking way too much of a parent in my opinion but it is what it is.

There are ways to make this process less mysterious and I firmly believe that gaining a sense of understanding of the process, if not control over it exactly, can go a long way in making a family’s life better.

Since I’m a fan of lists, I’m going to list off the things I think you should do RIGHT NOW if you haven’t already. OK?

  1. Buy this book: Wrightslaw: From Emotions to Advocacy.
  2. Read it. Put AWAY the highlighter and resist the urge to fold down pages or take notes. Just read it. It may trigger lots of emotions. I found myself getting absolutely furious with the school district over all the NEW ways I was now aware of how they had screwed with us.
  3. If you find yourself getting absolutely furious, get over it.
  4. If you can’t get over it, consider hiring an education advocate. You need someone who is going to reign in the emotions from here on out.
  5. Read it again. I’m serious here, you need repetition to learn…everyone does! I know you’re thinking that you don’t have time to read this even once, never mind twice, but you need to make time for it. It’s important. This time highlight/fold pages/take notes to your heart’s content.
  6. Review point #3.
  7. Develop a vision for your child. I blogged about this for the National Fragile X Foundation. Create a vision statement for your child’s life…think long and short term. You can see our vision statement on the Foundation’s blog: A Vision.
  8. Develop a Positive Student Profile for your child that fits your vision statement. There are a number of samples on that same blog on the Foundation’s website, Caleb’s is here: PSP-1.
  9. Save this file: Learning Styles (this has a page for boys and one for girls.) At least two days before your next IEP, meeting forward it to the entire team and tell them you would like the “Accommodations” to take your child’s learning style into account. We have encouraged them to copy and paste the language right into the document!
  10. Arguably, this point isn’t directly IEP related but I am guessing that at least ONE of your child’s goals involves social skills. Am I right? Yes? Good. So I want you to go to the Foundations’ blog again and read this: Finding Hope in My Children, by Holly Roos.
  11. Look at the slides.
  12. Listen to the podcast.
  13. Ask your child’s teacher on day 1 (or tomorrow if you’ve already started school) if you can give this talk to his or her friends. No one else can do this for your child, no one else knows your child the way you do and, at least in my district, staff are not allowed to give any specifics because of privacy rules so they cannot answer many of the questions that students may have. You have to do this. Next Tuesday, I’ll be making the request of Monkey’s new teacher and I want to puke…so I know how terrifying it is. But really, if you want the best for your kid…and I know you do…you have to do this.