We leave for NYC next week and couldn’t be more excited. Well, we could be a little more excited. Maggie came down with a cold and we are walking on pins and needles waiting to see what happens. But fortunately, she’s already getting better and we know she does not want to miss her cousin Leo’s Bar Mitzvah. She keeps navigating to his picture on her eye gaze device. We keep telling her, “we get to see him soon.” She is going to hold us to those words.
As part of his Bar Mitzvah, Leo decided to perform a good deed, called a mitzvah in Jewish tradition. For Leo’s mitzvah he came up with The 20/20 challenge for Rett Syndrome and for Maggie. Leo has become such a smart and empathetic young gentlemen. With cousins like Leo, we know that Maggie will always be supported and loved and that makes us happy. We had no idea he was doing this, which made it so much sweeter. The challenge is to walk up 20 stairs or donate $20. It’s such a great concept, especially for those that live in a big city. We loved seeing all of the videos of the challenge and even tried to accomplish the challenge in our house with our one flight of stairs.
Well, technically, Grayden accomplished the challenge. And part of the challenge is to ask other people to participate as well. So, since Gray can’t challenge people by himself, if you’ve read this far, consider yourself challenged to participate: 20 stairs. Or $20 dollars.
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.
Everywhere I look, I see people saying 2016 was the worst year. I get it. There is no doubt 2016 was extremely difficult for us. You guys have watched Maggie push through so many obstacles that Rett has thrown at her. The past few years, we celebrated her accomplishments more than not.
Then 2016 happened. It was a very hard year for her, and you watched as she lost so many skills, walking, balance, hand function and breathing normally. She is still fighting to get those skills back. She is walking better, but needs more assistance than before. Her balance is getting better, but she falls more often, so needs more assistance. She lost all of her hand function except being able to grasp a fork momentarily with her left hand. Her breathing has its good days and bad. On a good day, she hyperventilates and breath holds fairly often. On a bad day, it’s nonstop and painful to watch and scary for her. She is mentally stronger than I could have ever imagined. This little girl will not give up without a fight, I’m talking hanging on to a cliff by a fingernail and pulling yourself up, kind of fight.
2016 wasn’t the worst year of our lives. So much greatness happened as well. Grayden came into our lives and we couldn’t have needed him more. Maggie loves her brother. Grayden loves his sister. We love them both. Our family is complete. This strong, funny and curious little boy will learn so much from his sister.
THAT’S NOT ALL…
The science for Rett Syndrome is moving fast. Maggie participated in a clinical trial this year for Trofenitide. It wasn’t easy but she showed us it was worth it. We had to drive to San Diego 3 hours away 8 times in 10 weeks, I think. I don’t remember anymore. We made each trip a family vacation and made the most of it. Maggie played on the beach, swam, hiked with family, and surfed. She really loved surfing. Grayden learned to roll over, sit up, and crawl at the same time.
THAT’S STILL NOT ALL…
Hello, Mark Zuckerberg! AJ’s and Maggie’s videos reached some pretty influential people this year. So Magnolia’s Hope really brought the awareness this year. Very excited about that. AJ works on fundraising year round for various events but his biggest event is the Reverse Rett LA Gala. He won’t stop until we raise enough money to cure Maggie and all of the other girl’s with Rett. I’m right behind him, actually next to him. We are Partners in Crime. I spoke at the event, thought I bombed, turns out everyone was crying.
We truly are thankful for everyone that follows our blog. Watches our videos. Shares our story. Donates money. From the bottom of our hearts thank you and please hang in there with us. We will cure Rett Syndrome, but we aren’t there yet. We look forward to sharing our story with you in 2017, and we are hoping for more highs than lows this year.
We always say Maggie is the reason we will win this fight. But truly it’s our Magnolia’s Hope village. Thanks for your support, tears and willingness to donate. Love to you all. (written by Jenny)
Happy New Year!
AJ, Jenny. Magnolia and Grayden
PS. You might see more blogs and videos from me this year. AJ’s work schedule just got busier.