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Memorial Day weekend
We had a packed weekend, which I love. Saturday, Magnolia was to have gymnastics in the morning and Gray asked to go climb a mountain. So Mags and I had fun going to gymnastics while AJ took Gray to hike – everybody was happy. During the afternoon both kids were supposed to have swim lessons. I went and checked on the pool before lunch and it was 70 degrees, aka too cold to swim. So we had to cancel. While Mags and I were eating lunch, she kept navigating on her Tobii to Farm on her computer. So I modeled “What about the Farm? She replied “Farm, Farm, Farm, want.” So I modeled. “I want to go to Farm.” I was so happy she was trying to use her computer and not for the quick easy answers, which she has been doing a little more, but for something she actually wanted to do. So we looked up the closest farm and off we went. It was small but both kids were happy. We were there an hour, fed the sheep and goats, and bought a fresh watermelon and corn. Success! Here’s us getting Mags to feed the goats even though she didn’t want to get too close. Pretty much nailed the family selfie too.
Sunday we took a spur of the moment trip to Ojai. We visited some friends there. Ojai is such a peaceful and fun small town to visit, we should go more often. Or at least I should. Kidding, my family can join me. We ate, we swam, we walked around, we ate, then drove back to LA. Fun day! If you remember, the fires this past year surrounded Ojai, and you can see there is regrowth happening already. Last year the hills behind us were all on fire, but this year, to quote a Jurassic World slogan, life finds a way.
Monday was Memorial Day. We had planned to meet our friends at the beach. My weather app said it was going to be 68 degrees. I was tentative about a chilly beach but we packed it up and met them for the afternoon. It was warm where we sat, but closer to the water was chilly. Gray didn’t care, he chased the waves and wanted to play with daddy. Every time Mags and I walked to the water, she would turn around and head back to our where are stuff was. It was too chilly for her. She is so skinny, she gets cold easily. I have to remember warmer beach clothes for her. She would rather sit under the tent and eat watermelon. So that’s what we did. We had girl time. (outfits not necessarily worn in this order, lol)
I didn’t have Mag’s arm braces on her while we were at the beach and she seems so tight. Do you put braces on your Rett kids at the beach? I guess they are washable. I need to think about this, we plan on going to the beach a lot this summer. Maybe one brace is a beach brace, then leave another one as a dry brace? I’m up for suggestions.
#magnoliashope #rettsyndrome #parentsaretired
I’m running a triathlon for Maggie
I have seen people run races for causes. I have heard that this is a thing people do. But I am not a runner. I am not a biker. I am not a swimmer. I am just a dad who is willing to do anything and everything I can to raise awareness and dollars for a cure. Even if that means breaking my own body.
Four months ago Jenny forwarded me a link to the Malibu triathlon. She told me Shelly was running for Maggie and the subtext was clear – if Shelly, Maggie’s aide, is going to run, then AJ, you have to as well. It didn’t take any arm twisting at all. I had been looking for something like this to do. It’s been an incredible experience, just training for this race. Every time I get tired, or decide it’s something I just don’t want to do, I think of Maggie. I think of how much I would like her to even have the choice of telling me she doesn’t want to do it.
I don’t have that option. Maggie doesn’t get that choice. At least, not until there’s a cure or treatment which I keep being told could happen within the next few years, if we raise enough money to make it happen.
So I’m doubling down. Maggie will turn 7 in just two months. Her childhood years are disappearing and there’s nothing we can do to slow the sands of time. So, we have to speed the sands of research. We have to make that cure happen faster. So I’m running a triathlon this month. Next month is the Rett Gala in LA Jenny and I are co-chairing this year (please let me know if you have anything you’d like to put up for auction). November 7 is the Rett event in New York I will be attending.
The science is precipitously close to having something that can help Maggie. Maggie can’t wait any longer. So I’m running, biking and swimming as fast as I can. The next time I do this, I hope she will do it with me.
You can donate to support our efforts at rettgive.org/magnoliashope
Memorial Day weekend
Holidays can be stressful. All holidays. Right now, Maggie is so exhausted from her new seizure medications, on a day to day basis, we never know what to expect. There are plenty of days, we find ourselves tied to the house because Maggie is too tired to do anything. So this past weekend we really didn’t know what to expect.
Saturday morning we woke up and she was tired but also asked if we could go on a hike. So we did. The best part was, she was insistent that she walked with our friend Eric. She told us we would be allowed to walk near her but not with her. If he had to carry his new baby, then she would walk with our friend Leslie. I told Eric when we got to the nature trail, what Maggie’s plan was, he was happy to oblige. Maggie just loves him, I think she loves his french accent and how much attention he gives her. It was a fun hike.
Sunday,AJ wanted to fix some stuff around the house. Maggie and I headed to the zoo while AJ stayed home with Gray and fixed the sprinklers.
At the zoo, we usually look at the larger animals, but Sunday we decided to go to the petting zoo area. Maggie really wanted to pet the goats and she actually kept trying. There was a goat following us around wagging his tail and she finally got to pet him. After the petting zoo, she was so tired, she fell asleep in her push chair. So I sat in the shade for the next hour and just crowd watched. She started to get warm, so we left. By the time we got home, Maggie was overheating, so when I walked in the door with her and she was melting down, AJ decided to jump in the pool with her and we had an impromptu swim party.
Monday we had a few friends over, she swam, we ate BBQ, Maggie and Gray napped, we swam again, we ordered pizza. It was such a fun and relaxing day. Maggie went to bed smiling. This is honestly a picture of her in her bed smiling before falling asleep. 
I could not have been more thrilled with our weekend of excursions. There were no seizures, minimal exhaustion and just happy kiddos everywhere. Fun weekend aside, the thought is never lost on us, that we live in a country that affords us the opportunity to live freely.
I hope everyone had a nice Memorial Day.
“Freedom is never more than a generation away from extinction…”Ronald Reagan
Cali Snow Day
When the weather dumps rain all over Los Angeles and dumps snow in the mountains. Sometimes you just need to make a trip to play in the snow. Living in Los Angeles, we are only an hour and a half away from the closest Mountain Resort, Mountain High. So Sunday, that is what we did.
We want to take Maggie on as many adventures as possible. If she can’t have a typical life, at least we can make her life fun and adventurous for her. We have good days and bad days. Saturday Maggie didn’t have a great day, so when she woke up Sunday and she was doing well, we were excited to go.
The drive up there was easy, the kids napped, our friend Stephanie was stuck between their two carseats in the back and assisted Maggie when she needed help. We had lunch at a cute mountain cafe area.
It was a gorgeous day, families were sledding all over he mountain. We could see skiers and boarders and the snow tube area was at the top. AJ went to get the tubing tickets while Steph and I got the kids stuffed into their snow gear, which isn’t easy to do in a car. AJ returned to tell us the tubing was so packed we would only get two runs in. We were not putting the kids back in the car after getting them into their snow gear, we decided to play in the snow, while AJ went back into town and bought sleds. Stephanie convinced snow tubing staff to let us pull the kids around in the tubes while we waited. So technically, we did snow tube.
Maggie loved the mountain, her brother was confused. Finally AJ returned, we loaded everyone in the car and found a great area to sled. There were a few other families there. On the first run, AJ’s sled broke in half, thankfully he bought two sleds. Sledding was scarier than I expected. Maggie tried a couple of times and then she was very upset. Mostly because she was tired and hungry. She calmed down, went for a couple of more runs. I finally went down the hill with Gray and almost ran over another family.
All in all we had a fun day. There were less breathing issues, no rett episodes, just a couple of meltdowns. Maggie was so excited, her and AJ wrote a story on her Tobii. Just trying to make it work.
Last Day of Pre-K
With Betsy Devos’ hearing making national headlines this week, I thought it’d be helpful to share why a federal focus on special needs education is so important to us. Maggie “graduated” from Pre-k last summer. She wasn’t there. But she graduated. In fact, she hadn’t been in school since the beginning of April, but she graduated. She missed about 6 weeks because she was sick. Then she missed a week because Rett syndrome took her ability to balance – she was so unstable she couldn’t walk without help. When her legs got a little stronger (which, thankfully, they’ve been doing), we brought her in, though we knew it was going to be too tough for the school to manage.
We were right.
She lasted a few hours and only because there was another student absent, allowing her teacher to be a one on one aide for her. This particular school does not allow for one on one aides. So, when the decision was made that she needed the aide, we knew the school wouldn’t be able to support her. I had the district PT show up on that day with the hope she would be able to get appropriate supports for her to continue at her school. She ordered them, but they did not come in time. Services don’t magically appear overnight nor the equipment that is sometimes needed.
So, Maggie was unable to attend her graduation or her last 3 or 4 months of school. Which in total was 11 weeks of school. Could I have pushed harder? Always. But sometimes, I have to pick my fights. For us parents with kids with special needs, there is always a fight to be had. Mostly, we choose our battles wisely.
Watching Betsy Devos’ sheer disregard for the disability laws that protect kids like Maggie from these exact situations was frightening.
The law IDEA is not perfect, by any stretch of the imagination. It is budget focused and budget strapped, from our experience, and unless you fight, your kid won’t get the education they deserve. There is no menu of services, so you have to guess at what a school might be willing to provide based on your own research as to what is possible. As a result, most kids don’t even get all the services they could use because parents don’t know to ask, and districts don’t like to offer. But the law exists to get some services to vulnerable kids and families who need it most. It exists to level the playing field. It exists to prevent discrimination. And even so, discrimination against kids with special needs is widespread.
As it is, states already decide what they deem a Free and Appropriate Public Education. There has never been someone in a district meeting who had any real experience with Rett Syndrome, or with actually training kids on how to use eye gaze communication devices. They are already cutting as many corners as they possibly can because the programs are dramatically underfunded and that is in extremely progressive California. Under Betsy Devos’ plan, states deciding who gets what would create an even worse divide. Ignoring disability laws as she intimated in her hearing would serve to lower federal funding for necessary services. Kids will suffer.
She will claim that providing more opportunities and choices will give kids a better chance. But without federally mandated laws requiring Free and Appropriate Public Education for all kids, special needs kids will find limited choices. As it is, in Los Angeles, where choices should be vast, we have opted to home school (through a public virtual charter which does provide appropriate services) Maggie, because the LAUSD could not provide an appropriate setting for her with appropriate supports. Imagine what choices would be available in smaller towns and counties if federal funding for disability education were to be cut even more. The single school in those districts would be unable to support kids with special needs, and those kids would fall even further behind. I didn’t hear anything that implies Mrs. Devos was going to cut all federal funding, but I did hear an incredible disregard for the special needs students, and an obvious desire to change how federal funding for schools work. That’s scary for us.
The main problem when discussing special needs education is that people who have never had to deal with special needs look at it as a service or with pity. They look at it as the school doing the parents a favor. That the kid was never going to amount to anything anyhow.
But Maggie is smart. She is testing a grade or two ahead of her current placement. She is amazing her teachers and all of us with the things she has picked up and learned.
Presuming competence is the only way you can treat a special needs kid. If you presume competence and you’re wrong – you have done a dramatic disservice to the child and their potential. If you presume competence and you’re right, then you are teaching a child how they can contribute, even if they may not look like they can contribute much. And, in Maggie’s case, if you don’t presume competence, when there is a cure, you will have wasted an extraordinary opportunity to provide a little girl a chance.
That said, after listening to Betsy Devos’ hearing, I cannot presume any competence for her. This isn’t political, it’s just about Maggie. A woman of privilege like Betsy Devos has certainly never experienced a situation like ours, and I hope she never does. But I also hope, if she does end up getting confirmed, that she will at least walk a mile in our shoes to understand that education is not just for the best students to achieve more, it’s also for the kids who struggle to learn how to achieve at all.
Last Day Of School
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.
Now? She chooses to sit. And for her, even something so simple, is great progress.
Memorial Day and Communication
We’ve been trialling a different eye gaze computer for the last few weeks. Susan Norwell, one of the respected experts in Rett Syndrome communication, came to visit and gave us a real kick in the pants – in a good way (video forthcoming). We’ve become very adept at reading Maggie, understanding what she wants, understanding what she needs and avoiding meltdowns. Of this we’re proud. 25 minutes into Susan’s visit, Maggie was starting to fall apart – arms waving, body shaking, crying, the whole 9. We did what we typically do, sing songs, feed her, whatever we can think of, or whatever we think might help. Susan, rightfully, observed we were just feeding into her behaviors. By giving her everything she wanted or needed, she wasn’t compelled to use her computer to communicate. We’ve felt like we were disciplining her at times. But it’s also hard since, without her being able to talk back, she still acts and responds the way a 2 year old would. We just have to remember that she’s not. Her body may not work and her voice may not work, but her brain works fine. She is smart. She needs everything a typical 4 year old needs. Including discipline. So now, we have to force her to communicate, and while it will be hard for us, let her cries motivate her.
Susan trained us on the next step of the communication device. It’s called Sonoflex and it’s the beginning of sentence structure. Right now all we’re doing is modeling – that means, essentially, we just talk to her using the device instead of using our words. Much the way any kid learns how to speak, Maggie will learn how to use this. To me it seems crazy – it seems like we’re constantly teaching her new languages. Now instead of 12 options on a screen she has almost 30. And the amount of things she can talk about is drastically increased as well. And despite the assurances, and her success on the previous system, I didn’t really know how long this would take.
So we’d go about our business of talking using a touch screen computer. We started talking about our plans for Memorial Day – how we’d be going to the beach, playing in the sand and going swimming.
Maggie selected pail and shells. I asked her if she wanted to collect some shells in a pail. She confirmed that’s what she wanted to do. I had my doubts that that’s what she intended to say. I mean these devices are amazing, but they’re not necessarily reliable. We’re never really 100% that she means what she says. Plus, with her limited hand use, collecting shells has always been both an impossibility and a cause for regret.
But she said it, so when we got to the beach, I passed her a pail which she held in her right hand, an impressive feat in and of itself, considering she almost never carries anything in her right hand and then we scoured the beach for shells.
She had the best time – and sitting there showing her shells and asking if it was worth keeping or not…it’s indescribable. Jenny cried. My heart was full. And all because we started forcing her to do the thing we want most desperately for her to do – communicate.
Just a normal Labor Day
We traveled to New York for the Labor Day weekend to see my parents and Maggie’s cousins, uncles and aunts for a weekend at my parents house, all under one roof. We did the same thing a few summers ago, and it was great – bbqs and lobstah pahties, collecting shells by the beach and more ice cream than anyone should eat. All the things that I always loved about summers growing up. But that was before we knew what we were up against and before she was exhibiting any symptoms. In fact, the last time we did this trip was the first time she started army crawling. So, I guess it’s been awhile.
But to the cousins, it was like no time had passed at all. Endless summers for this crew. Just beautiful. And we could all pretend to be normal for a little bit.
First Day of School
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.
