We have been homeschooling Maggie this year, for various reasons – mostly, because she had a rough year last year. She was constantly getting sick, which in turn caused more Rett symptoms, and though she has fought so hard to gain back her strength, balance and walking ability, being at home has allowed her to focus on therapy and helped her get back to her old self. Of course, Rett is progressive, so now we have new symptoms she is dealing with on a daily basis. Her breathing, seizures, drooling, anxiety and some balance issues seem to be hindering her the most right now. So sending her to a classroom is very stressful for everyone involved.
Right now, Maggie has school at home through an online classroom. Shelly assists her during class, they really have become quite the duo. Of course, AJ stays up late every night to program her eyegaze computer with the next day’s classwork, so that Maggie can be as involved as possible.
So that is what we’ve been doing. It’s been working, we’ve been pleased by her progress. Then a few months ago, the school district called and offered Maggie to attend a satellite campus for homeschooled kids. At first we said, no. Then we realized Maggie is doing well, we should try it.
So on April 11, AJ took Maggie to school, Shelly met them there to be her aide. AJ introduced her to the classroom of kids. He explained Rett syndrome and discussed her breathing issues. A little boy in the class immediately says to AJ, I think she is having problems breathing because it;s her first day. AJ said, that might be. The way I imagine it, a single tear of joyful innocence rolled down his cheek as he said it. After a few weeks, we’re convinced Maggie loves it as she screams joyfully and skips as she pulls AJ to the classroom. Shelly is with her, so she is safe and is able to communicate. There was even a little girl who went up to Maggie and said, “Maggie, you can be my friend.” And when I heard that, my heart exploded a few times.
Turns out this is the perfect situation for Maggie right now. Two days a week she goes to a satellite campus, then to therapy. The other three days, she is homeschooled and also goes to therapy. It allows her flexibility, socialization, and the security and comforts of home. We are hopeful we can continue her education this way, for awhile. From the way it seems, she is as well.
I wrote this post last week and this week is her final week in the class for the school year, but she is unable to go. Maggie was has been hospitalized twice in the last week and will be resting at home this week. At least there is hope for next year. We know we like this program, we are hopeful that it works out for her.
We spent father’s day with my family on the East Coast.
We’ve written about it before – how much she enjoys her cousins; and this trip was no different. I think there’s a special bond with family that she understands on a visceral level. It’s almost like she knows they won’t judge her and they just want to play, no matter what her limitation may be. We spend a lot of the time in the pool, where Maggie is more or less a typical 4 and a half year old – splashing, kicking, giggling.
I was also happy they asked questions about her. At first I was scared of questions people would ask me about her. But I’m not afraid of those questions any more. I’d rather they ask than stare and wonder, especially her cousins. I don’t feel like it’s rude to wonder. I feel like it’s rude for us to keep her issues hidden. I still get frustrated when people ask questions of her to me in front of her. But I understand. She’s not really going to answer, but we do try to keep discussion about Maggie to times when Maggie’s not around. And if she is, we try to include her in the conversation. Just because she can’t talk doesn’t mean she can’t listen. Just because she can’t stop, doesn’t mean she’s not paying attention.
And her cousins try to include her no matter how many times Maggie ignores them, or runs away from them because she can’t calm her body. And while they were shooting each other with water guns, I would help Maggie shoot them.
Maggie is constantly running, so we made up finish lines for everyone to race to, we played games on her eye gaze computer, and we ate.
I told them how Maggie can answer yes or no questions and they had a great time finally understanding a way to communicate with their cousin. And as a result, she was happy to show off. It was as typical a Father’s Day as an atypical family like ours could ask for. And that’s a Father’s Day present I’ll definitely remember.
Year 1 of school is in the books. Hard to believe how difficult a decision it was for us to even send her to school. We were so nervous that she would lose more of her hand function, more of her speech, that without us pushing her every single minute, she would regress.
That’s what Rett Syndrome does to a family, it leaves you in a world of uncertainty. We’ve already seen her regress once – watched as her body, her balance, her nervous system started failing itself; and the fear of watching that happen again was paralyzing. We had our reservations and some of her doctors had their reservations.
But the teachers were so welcoming. They were so friendly and experienced. This particular pre-school integrated all of her therapies in one place. We still supplemented with outside therapy, but she’d be getting work by professionals and we’d be able to have a few hours not forcing her to do things she didn’t want to do. Those professionals helped troubleshoot and come up with solutions for the things that would come up.
Now, I can’t say it was perfect. In the end, I’d say she probably did lose some hand function, some control over her arms, and I’d say she’s about even from where she was with speech. Does that suck? Of course it does. Some of it was out of anyone’s control. Except Rett. It is definitely Rett’s fault. But I can’t blame anyone else and it wouldn’t do any good if I could. That’s the progressive part – the part that keeps delivering new symptoms and making the ones she does have worse. I mean, any loss she experiences at this point is not from lack of trying.
In any case, at school they definitely worked really hard on behaviors. Before school she would run incessantly around a room, never stopping to pause except, maybe to bang her head against a wall.
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.
There has been a lot of stress and anxiousness preparing for Maggie’s first day of school. Ours not hers. We kept telling Maggie that she was going to be going to school and it was going to be fun. She didn’t really care, but how could she? She had never been and didn’t really understand, as far as we could tell. As far as she is concerned she has been going to school already. She has been in therapy for the past year and a half and probably thought she was just going to more therapy, which is mostly fun.
i know that the first day of school is emotional for most parents, but having a kid with special needs amplifies it. On top of the typical Pre School list of extra clothes, pull ups, panties, wipes, lunch and snacks, we had to make an extra bag for therapy equipment/devices that we use on a daily basis. This includes an arm brace, hand brace, eye glasses, weighted vest, weighted bracelets, AFO orthotics, and her PECS book. All items we have become accustomed to and the school staff needs to learn to use to help Maggie. We had to meet with all of her teachers beforehand and explain Rett Syndrome to them. Fortunately, these teachers have had some, albeit meager experience with Rett, but Maggie’s Rett is different, so we had to explain her to them. We spent an hour and a half in a room of 12 different therapists walking them through every little intricacy we could think of. We’re concerned because her teachers don’t know, and won’t really have the time, to force her to use her hands or bear weight on her arms, and that could result in a drastic loss of hand function – after all, “Use it or lose it” is the doctor’s mantra about Rett. So, we have to hammer that home to teachers who have to deal with 8 special needs kids who all have their own special special needs. It’s a lot.
We also needed an earthquake emergency bag. When I read this on the back to school list. I lost it. I couldn’t breathe. Living in California, I knew we needed to have one for her at school, but in the chaos of everything else, I simply forgot. So the day before school, I packed her earthquake bag. I cried and cried and couldn’t figure out why I was so upset, then I realized. If there is actually a disaster, Maggie is nonverbal. She can’t ask for help. If something happens to the school staff and she wanders about, she will wander away. Of course, I tell AJ and instead of his usual, “it’ll be fine, Jenny.” He got upset as well. He didn’t cry, but he was upset. AJ thinks we should microchip her, although I don’t think anybody does it besides veterinarians, I’m kinda with him on the idea.
So, now, I’ve ordered tags for her shoes, that will be on her at all times. They have our numbers on them and say “Not speaking Yet”. Rett Syndrome. WTF! Of course, the scenario where there is an earthquake and Maggie is all alone seems, to say the least, slim. But at least she has her tags.
In all honesty, if there is an earthquake, the building goes on lock down to protect the children. If they think I’m not going to repel off the roof and come in through the window, they are kidding themselves.
Other than my stress, anxiety, exhaustion from packing her bags, stressing about earthquake safety, I’d say Maggie’s first day of school was a success. I didn’t leave the school grounds, and she was happy and amazing. When she came home, she couldn’t stop giggling. She’s having the best time. I can’t say how much of a relief that is. We were certain we’d have to take her out of school, that it was unlikely to work out, that she was going to change, be exhausted and miserable. So, far, though, quite the opposite. The teachers have been impressed with how well she was transitioning. I don’t think they are as impressed with my transition, since I’m the only parent sitting on a couch in their lobby.