Names have been removed to protect everyone.
I sent this first letter to the PT and OT assessor.
Just to let you know that I have emailed both
and cc’d here to express my concerns about the goals set and the services offered. I am awaiting their response.
I am a little disheartened that no one was able to consult an expert in Rett Syndrome as I had requested, and as is Maggie’s right, before these goals were established. And apologize that I didn’t know I had to be so insistent.
We do not have the luxury of time here. Every day that Maggie does not have appropriate services is another day that her skills can regress, making it more and more difficult for her to achieve the goals set out for her.
Let me know what is in my right to pursue and how to do it expediently. If I can’t engage anyone in these conversations, I’ll likely have to request a program review and have experts at said review, so we can establish appropriate goals for her and accompanying appropriate services.
Thanks for your help,
I am sorry that you are feeling disheartened by this process. I have spoken to … and … and both feel it would be most appropriate to attend the reconvened IEP to address your concerns. I have sent an email to … to determine if she has completed her assessment. I know the nurse has spoken to you and we now have information regarding Maggie’s health in the IEP which we will also go over.
Please provide me with some dates that will work for you to reconvene the IEP and I will then consult with everyone to see what will work.
There’s nothing more important to me than this. Maggie has a doctor’s appointment Wednesday afternoon and the AAC assessment takes place on Tuesday. So, any time after that should work.
And thank you. Can we make sure there’s a Rett Syndrome expert present at that meeting?
I believe our team of highly qualified educators and therapists have familiarized themselves with the unique needs of a child with Rett’s Syndrome, specifically with regard to motor delays, speech delays, and autistic-like behaviors, and how these characteristics may impact Maggie’s ability to access the preschool curriculum at McRory. Please let me know what specifically you feel a Rett’s Syndrome specialist would be able to bring to the IEP team that we may have not yet addressed. Of course as Maggie’s parent you are always allowed to invite anyone you wish to the IEP and we would welcome and listen to their input as part of the IEP discussion.
What do you think? Am I being too harsh? Or am I being a strong advocate for Maggie? Tell me in the comments what your honest opinion is.
A couple of weeks ago, we took a little weekend trip to the desert because nothing says relaxing like 109 degree temperatures. It started out auspiciously with Maggie unable to calm her body, communicate her wants or regulate her body temperature. The last one was a new discovery. She’s always run a little hot, but so have I. So, whenever I’m warm, I know she’s miserable. We learned the hard way that heat is a real problem watching her face get flushed, her grow lethargic, unwilling to eat much, even her favorite foods, and even, on occasion, vomit. Not fun. She’s also taken to biting and hitting in frustration. Mostly me. But that doesn’t make it better. I’m constantly terrified that she’s going to bite someone else, mostly because she doesn’t just bite, she locks her jaw and you have to pry open her mouth with your hand.
But while the first day was brutal, the next two days were a blast.
We spent two straight days jockeying between swimming and air conditioning which, from what I can tell, is really all there is to do in Palm Springs.
We went with our favorite travel companions, Leslie, Eric and their 2 year old son, Ollie. They’re just doing what friends do by dragging us along on these adventures, and it’s appreciated more than we can show while we’re with them. Ollie, just learning to speak himself, is great with Maggie and wants to play with her regardless of how many times she rebuffs his efforts. And Leslie and Eric have always been quick to get down to Maggie’s level, give her a good hard squeeze to give her some sensory input, and speak a little slower than normal so Maggie can follow along. It shows that they’ve read up on Rett and are doing everything they can for her. And it’s obvious how much Maggie appreciates it. No matter how overheated she may be.
IEPs are dumb. That’s the school district process whereby people who have never met Maggie spend 30 minutes with her and evaluate all of the things she can and cannot do and make recommendations about how she’s going to get better. I mean, how is that even possible?
You go, sit in a room and all of these people tell you all of the things that are wrong with your kid and then they tell you they aren’t really going to offer any services to help her.
We have a neurologist trained in this particular disease advising 3 hours of OT, PT and Speech therapy every week. The district? 120 minutes of PT/year. 60 minutes of consultative OT/week. Speech is the only one that got close at 120 minutes/week, though none of that would be required to be direct one on one instruction.
I mean, I’m going to fight it and I’m going to win, but I don’t know why the process has to be so annoying. It’s like buying a car – why do I have to argue on the price – just give me the lowest price you can and we’ll both be happy. You’ll sell more cars because you’re not wasting so much time putting on your ridiculous negotiation show. They’d be able to help so many more kids if they didn’t have to waste resources on due process and mediation. And who wouldn’t fight for this face:
Anyways this is just the beginning of the fight – here’s the letter I wrote to them as I boiled with frustration after three days of thinking about it. I had to rewrite this 5 times to avoid being too pushy. I can only imagine the wrath I’ll feel if this drags on:
I know everyone is trying to do the best they can by her, but just so you know, I very strongly disagree with the limited PT and OT recommendations. 60 minutes of consultative ot/week feels really light. As does 120 minutes/year of pt, especially considering the safety concerns and the fact she can’t actually access the equipment without maximum adult support. Not to mention the fact that she’s been in intensive PT since her last IEP and she’s only been able to maintain her skills – more PT would allow her to progress and that needs to be provided by the school. Same with OT – she can’t use her hands, hardly at all, how is 60 minutes of indirect ot going to remedy that so she can actually learn how to write?
I’m not sure if the IEP meeting was the place for me to voice that, or if I’m just supposed to go through due process to get there. But, if there’s any way to sway that recommendation before the IEP gets booked, I’d sure like to avoid the process, as I’m sure everyone else would.
Thanks – I’ve just been thinking about it the last few days and figured I should voice my thoughts sooner, rather than later. You mentioned that the parents are a part of the IEP team, but I didn’t feel like I could actually disagree at the meeting. I felt like it was more a venue for me to hear it.
Also, as a general rule, I’d think that hearing what she’s incapable of doing is a bad way to go about IEP assessment. It should always be the opposite perspective. Lyn Dee was great – sharing what she can do and how she wanted to supplement that progress. It’s such a stressful thing for special needs parents, I’d advise any assessors to go about it that way instead of starting from the negative.
Again, appreciate all your efforts on Maggie’s behalf.
Traveling is always harder than it needs to be, with more thought than should be required needing to go in to what to bring, how she’ll be comfortable, what will entertain her on the plane, how will we keep her entertained when we’re there, what kind of sleeping arrangements will there be, and how will she sleep. Everyone has to go through those same concerns, but with a special needs kid, it’s amplified. Her discomfort isn’t easily explained to her or others around her, and it’s not easy to calm. When she’s uncomfortable, she’s uncomfortable and until her discomfort is ameliorated, she’ll get more and more frustrated. Beyond that, there are medical concerns – what if she has some stomach problems or sleep problems or heat aversions as she’s been having lately, or even respiratory problems and we end up not being able to travel back, and get her to her therapies or back to school. Not the worst thing since we almost exclusively travel to be with family, but the longer we’re away, the less we’re prepared for.
So, here’s the list of things we always have to make sure we absolutely can not forget: Blue Therapy Wedge, Black Bamboo Arm Brace, Purple Benik Hand Splint, Spio Compression Glove and sleeves, Shoes with AFOs, Meow Meow, Bracelets, Cups, Ipad loaded with Signing Time, Cares Harness, snacks, drink, Miralax, LCarnitine, Fish Oil, Vitamins, Pull ups, Swim pull ups, Night Time Pull Ups, Potty Seat, Tooth brush, Toothpaste, Therapy Brush, swimsuit, sunglasses, wipes, Fork, sippy, bib, glasses, dysruption glasses, Go Pro, Plane toys, Stroller, Clothes for 3 days, Pajamas, Swimmies, Melatonin, Measuring spoons, Books, Night Light, Weighted Blanket, Monitor, Headphones, Pillow A smattering of touchstones and therapies and just things that will keep her safe.
I bring it up because it was on our mind as we decided about Boston. It’s a minor thing in the grand scheme of how we came to our decision, but if all of this is a minor thing – all of the major things that led to the decision are a little easier to comprehend. Traveling did not even come into play when we were thinking about going. To have all of the headaches that travel would cause not even factor into the conversation, we knew this was a weighty decision.
Ultimately we decided we just couldn’t do it right now. Maggie is just settling into her routine and she’s making some great progress with the interventions we’re currently implementing. Disrupting that just seemed too much. As much as we wanted to be a part of it – help all of the girls with Rett learn something new about potential new treatments, and give Maggie a medication that has the potential to help her, we just felt like it was too much for her, for us, at this time.
It was a very hard decision to come by and it took us a while to arrive at the decision. But it’s the right decision for us right now. Hopefully the trial works, the medicine is made available soon and Maggie can access it then. Until then, we won’t wonder if we made the right decision or not, we’ll just make sure to keep Maggie progressing as best we can.
A clinical trial for Rett Syndrome called us over the weekend to let us know that a spot had opened up for Maggie. She’d be the 30th girl of 30 girls in the trial. Our emotions are all over the place. This is something we want to do. We need to do for her. When we were first diagnosed I called everyone I knew in Boston to try to help us get in – ultimately those efforts were unsuccessful and we got denied. But desperate to get some medicine to treat her, we were willing to do anything.
Now that things have calmed down a little bit and we’re faced with this decision, our perspectives have changed. We’re both scared: It’s a big decision. Do we put our 4 year old through the poking and prodding for science’s sake because it might help her? What if it doesn’t? What if we go through all of this effort and all we’ve done is wasted a year of the therapies that are helping her?
All of the cons drastically outweigh the pros – but there’s that one pro just staring us in the face: “What if it helps?”
Yesterday I found myself repeating to myself, “Must not get complacent. Must not get complacent”. It’s so important – because if I’m not constantly pushing for answers, I know I’ll just relax and accept. I don’t want to do that. I love her for who she is, but I know she can get better. I know the answers are close.
I’m not sure if the hesitation is complacency, or optimism that something better is close and I’m not sure I really know how to tell the difference.
We found out October was Rett Awareness month when we first were diagnosed and we’ve been talking about it for months. What are we going to do? How will we contribute to Rett Awareness Month?
I had grandiose plans, but am glad I’m more or less just a participant in a number of events. Awareness doesn’t end at the end of October, but it can begin today if you’re looking for ways to help. Maybe you’ll change your Facebook profile picture to a purple icon or a Rett logo. Maybe you’ll participate in a stroll-a-thon, or a Rett golf tournament. Maybe you’ll just hug your little ones a little tighter this month. Maybe you’ll find a way to donate if you haven’t. Or maybe you’ll consider tweeting the list below, provided courtesy of Girl Power 2 Cure for the next 31 days:
However you choose to get involved during Rett Syndrome Awareness week is likely more than you’ve been involved in the past – so we’re already spreading awareness. You’re already helping – there are already more people involved this year, then there were last year…as in you guys. Just by being a part of our journey, the word is spreading. Hopefully soon, when it’s cured, we can all stop talking about.
31 Tweets – October is #RettSyndrome Awareness Month – share this flower to help
A little girl is diagnosed with #RettSyndrome every 90 minutes. gp2c.org
Can’t speak. Can’t walk. Can’t use hands. But you know everything going on around you. It’s #RettSyndrome. gp2c.org
It’s #RettSyndrome awareness month. Girls living trapped unable to speak or use their hands. Hear their stories. girls.gp2c.org
October is not just for #breastcancer awareness. Women are suffering debilitated their whole lives with #RettSyndrome.
Have you seen these cool Purple Cards? 60,000 more people learned about #RettSyndrome this year. BE NEXT. www.girlpower2cure.org/how-to-help/thepurplecard
Baby girls are born “normal” but begin to lose motor skills between the ages of 1-3 years old. It’s #RettSyndrome.
#RettSyndrome is caused by a single gene mutation that leads to underproduction of an important brain protein.
#RettSyndrome is the leading genetic cause of severe impairment in girls- most cannot speak, walk or use their hands. gp2c.org
Despite physical disabilities, girls with #RettSyndrome are functioning mentally at a much higher level than previously thought.
What is as prevalent as Cystic Fibrosis, ALS and Huntington’s but you have not heard of it? #RettSyndrome. It’s a girl thing.
#RettSyndrome has been reversed in the lab and could be first curable neurological disorder. gp2c.org
Why retweet this @GirlPower2Cure flower? It is always in bloom with hope & positive energy. Join me in fighting #RettSyndrome.
Need a challenge? Try one day in my shoes. #rettsyndrome girls.gp2c.org
Friendship isn’t about who you’ve known the longest. It’s who walked into your life, said, “I’m here for you” and proved it. #girlpower2cure
Expectations. Have them. Rett Girls can do amazing things. #rettsyndrome #girlpower2cure #physicaltherapy
Not all superheroes wear capes! #girlpower2cure #rettsyndrome
Believe in the power of believing in yourself! #rettsyndrome #girlpower2cure
I think I can, I think I can, I think I can….I know I can #rettsyndrome #girlpower2cure
Look into their eyes and hear what they are not saying; because of #rettsyndrome their eyes speak louder than their voices ever will.
In honor of #rettsyndrome awareness month, I am rockin’ the @GP2C flower and you can too! https://secure.girlpower2cure.org/np/clients/gp2c/giftstore.jsp
1:10,000 doesn’t seem like many but if it’s YOUR child, it’s too many” #rettsyndrome
There’s real hope for a cure. #rettsyndrome #gp2c gp2c.org
I know a girl that puts the “rett” in pRETTy. Actually I know lots of them, let me introduce you: http://girls.girlpower2cure.org/
Rett Girls might not fly or leap buildings with a single bound…but they sure are SUPER HEROES to me! #rettsyndrome gp2c.org
What can girls with #RettSyndrome do? Amazing things! WATCH: http://www.youtube.com/rettwecan.
Love this video! Makes me want to put on my dancing shoes and raise awareness for #RettSyndrome. http://www.youtube.com/watch?v=0KcK-Y7hs-4#t=19
I’ve met some amazing girls with #RettSyndrome. I invite you to take a moment to meet some of them. http://girls.girlpower2cure.org/
I’ve covered a lot of miles this year but so has @GirlPower2Cure. Join me in their fight against #RettSyndrome. gp2c.org
How can you help a girl with #RettSyndrome? Give them a voice and get involved! http://www.girlpower2cure.org/how-to-help/volunteer.aspx
Closer than ever to a cure. Hundreds of thousands girls & women can be saved. Join our fight against #rettsyndrome. gp2c.org