Dreamin’ Big

I have a secret.

I believe my child can learn anything. Anything.
Know what else?
I believe yours can too.

I don’t think it will be easy–please don’t misunderstand–but possible? Absolutely.

Last week I was talking with Erin about her son Fletcher and his adventures thus far in public education. Erin spoke frankly with me in saying that while school will have benefits for Fletcher, an education might not be one of them. His school just isn’t ready for the Fletchers of the world. She wondered aloud, “where were the kids in wheelchairs before now? At home?”

I posed this same question to one of Charlie’s therapist last week before our adventure O’ Disney and you know what she said?
“That or an institution.”

Seriously?

And because I can’t let a question go, I had the same conversation with Charlie’s teacher two days later. She basically confirmed what the therapist said–that the phenomenon of sending kids with multiple disabilities to school is still pretty new. I can’t say I’m surprised, but at the same time I sort-of am. As I’ve mentioned before, I worked in four different schools over the course of five years and I can remember exactly ONE kid in a wheelchair. I chatted with some other parents on our visit to Plano and got more of that same picture. One mother said that her child is the first the school’s ever had that’s in a wheelchair. Another mother said that she’d prefer to send her child to regular school, but that the teachers there just weren’t equipped to handle her child’s disabilities, so she sends her child to a school specifically for the disabled.
So where does this leave me and Charlie? Or the other parents of disabled children out there?

I think it’s important that to realize that many of us will be ground-breakers. Not all of us–some of us will be blessed to have resourceful, knowledgeable schools and staff that will rise to the occasion and accept our children with open arms.
Many of us, though, will be the first ones we know to attempt this. Charlie’s teacher also told me, “I think the burden of Charlie’s education will fall on you.”
I know she’s right.

I could kick and scream and demand all sorts of things for Charlie, but what I can’t demand is that they see his potential. I can’t make them see the bright little boy inside the body that doesn’t always behave. There’s only so much that I can make them do. The rest is up to me. I’ve been entrusted with a unique soul and that’s a mighty big responsibility.
Even from a practical standpoint, I know that many of the people in public schools just aren’t educated enough. The field of neurology and what we know about the brain has changed tremendously in just the past ten years. It can take a long time for science to become practice in the classroom. How many of Charlie’s teachers will be up-to-date on neuroplasticity? How many will know that the brain can re-assign functions or that certain activities can actually create brain growth? How many of them will be stuck in the old way of thinking that says that you’re born with your intelligence?

Honestly, I feel like I was made for this challenge.

I spent five years teaching learning disabled kids with little or no training. I learned on the fly, figuring things out as I went along. I had to argue with other teachers and I got called a pain in the ass more than once. I learned to FIGHT for what was right and I learned how to sweet talk my way into much more than that. I learned how to focus on my goal and spent a lot of time eliminating the distractions.
I’ve never had a student like Charlie, but I’m ready to try.
But I don’t want to do this alone. I want to do it with other ground-breakers–other parents who are trying to give their brain-injured kids the best.
So, expect to see more stuff on here about lessons, what I’m doing with Charlie and how I’m doing it. Please, please, please send me any questions you have about anything you see here. Also, please share any successes you’re having.
Maybe you’re reading this and you’re not sure. Maybe you think that nothing can be done for your child. Maybe you’re right, but let me say this: Trying never hurt anyone.

I’ll wrap this incredibly long post up with a story.

Charlie’s teacher began her career working in an institution in the late seventies. There was a man there known only as Flipper because extreme spasticity had bent his arms permanently inward. Flipper had been in the institution since before his third birthday and was now over the age of eighteen. Everybody said, “oh that Flipper is so sweet, but so retarded.” One day a nurse took a liking to Flipper and started spending a little extra time with him. Before long, she’d taught him to read. She fashioned a rudimentary communication system and it turns out that Flipper had been paying attention all along–he just didn’t have a way of letting anyone know. Teacher left the institution, but later she heard that Flipper had moved out and was living in a group home.
That’s a pretty big payoff for a little extra time on the part of a nurse.

If you think you’d like to share ideas and tips with other parents on educating your special child then please become a fan of Bird on the Street–I hope to make the Facebook page a place where we can share and learn from each other.

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Comments

  1. Mamá Terapeuta says:

    Oh gee… I've been struggling with this same issue right now.

    My faughter was at a regular preschool. First year it was FANTASTIC. The kids loved her, the teachers understood she was smart and find out a way to do activities with her and even evaluations.

    But the next year they changed teacher and she wasted the whole year… it makes me so ANGRY that I only knew that at the end of the year…

    So I started a crazy search for schools. I wont a regular school, not one for disabled kids… But I got one NO after another… It was so frustrating!

    So I don't know what to do. So far, my best choice is to homeschool her. I kinda hope that this year we are going to give her important tools like communication and potty training, so next year we can search for a school and she'll be more prepared.

    Bt things in SouthAmerica are way worse than in the states, so I think she will end u being 100% home schoolin.

    Sure, it is not enough to have her rehab entire in our hands, and her healt.. Lets educated as well!!!

    (Also, there was a big earthquake here 2 weeks ago and we all though we will die… So the idea of sending her to a placer she might LOOSE TIME when life can be so short…. I just cant accept it right now=.

    already a Fan on facebook! I add it to my fanpage as well :)

  2. Katy,
    you are so right about these topics….A fear that I have been dealing with for well…six years. In SC we have two different types of classes for kids with disabilities- "profound and trainable"….Trainable? Profound? My child is neither! She is smart…just stuck not being able to express it all the time. Here these classes are largely babysitting services. Mixed classes with all kinds of kids and usually just a teacher and maybe one or two personal care aids. If Faith did go to school she would be sent over half an hour away to the other side of the county, really to the bad side of town. There are good things about school for sure…but for me/Faith there are too many uncertainties….I know that there are parents out there who fight to get their kids in school who want to mainstream them but for Faith, I don't believe that is the best thing right now. Just sticking my personal opinion for my kid in here. Thanks for the insight…looking foward to more about this, Katy!

  3. Oh Katy! This post is fantastic. Honest and heart wrenching and inspiring, all wrapped up in one. And the photos? Turned my heart to goo.

  4. I'm with you on this one. Monday starts with us talking about PPCD for Caleigh. I don't want to send her. Probably won't either. I plan on doing homebound schooling through the school district, but they are very picky about allowing that. I've only heard the words mentioned twice. I'm ready for the fight.

    All of Caleigh's medical issues make it hard for me to justify sending her to school at 3yrs old. Tubes, IV's and infection control don't add up. I plan on doing a school program at home with her. I still have that website you mentioned awhile back bookmarked and I'm ready to start it. I think it will be wonderful to actually "do" something with a plan for her education.

    I'll keep checking in!

  5. The Henrys says:

    You are so right. School does have it's benefits, but also many drawbacks. I have had many problems with Gracie's school and everything is a fight, even getting them to just follow the law.

    Last fall, I came very close to pulling her out and homeschooling her, but I do not think that is right for Gracie. She needs to be around other kids because she learns so much just by watching them.

    I, too, look forward to having more of this!

  6. Nadine Hightower says:

    Very inspiring!
    Think of all those people that told Charlie would never be able to do this or that…Boy were they wrong!
    Now think of all the people that have a specical needs child that LISTENED TO THE DOCTORS and never tried to do all the things that YOU have…to me that's scary!!

    He can do anything!!
    Go Charlie Go!!

  7. PletcherFamily says:

    I love reading your blog. I am a school nurse and can understand parents frustrations when it comes to public school and children with disabilities. My own child is going blind, and will probably be completely blind by the time she gets to Kindergarten. While the school is very supportive, they aren't sure what to do with her since they don't have any other blind children in our small school.

    It is hard to advocate when you, too, are learning. I just keep opening my mouth and asking questions. I am the biggest advocate for my kids (my own and the ones I care for at my school) and have made great strides with the teachers with a very "its okay, lets do it together" attitude.

    Good luck to you and your beautiful boy!

  8. The end of that story reminded me of what Elisabeth's speech therapist always says, 'I know she's got a lot in there….it's just our job to help her figure out how to communicate it'

    And that always makes me feel good because she believes that Elisabeth has a lot of thoughts and abilities….her body just hasn't caught up to that yet.

    Also, in regards to children being put in institutions, that was the norm back then. And for the life of me I cannot understand it. There is no way in the world I would EVER put Elisabeth in an institution….EVER. But one of Donald's great-aunts who was (still is) severely mentally retarded was put in an institution when she was 4 or 5 years old (back in the 60's I think). She is still living in that same place and has done very poorly there. I often wonder how much better she would have done if the family had kept her. A child needs love and acceptance and devotion and I don't believe that they can get that in an institution. It breaks my heart to think about it.

    Anyhow, I love what you are doing here. You are an amazing person; the world needs more of you. I'll definitely become a fan.

  9. Are you freaking kidding me right now?? This is an a-may-zing post. I love love love it!! I'm gonna have to link to it. RIGHT NOW!

    I'm in it with you; with ALL of you.

    Oh, and I just became a "fan" on FB :)

  10. I always knew that your stint as a teacher was to prepare you for what you are now facing.
    You can do it!

    You and only you can be your child's advocate and honestly when we get the responsibility of a disabled child we automatically take on the reins of advocate.

    I dont know if this works in the US but I got my son in a 'mainstream school' but with an aide or assistant or shadow as they call it. I know my son has autism and not CP but I am sure in terms of getting into schools a shadow will be a great help.

    Also I am shocked that there are not IEPs or systems set up for 'mainstream schools'to assist your son and others with CP. I guess it is a rocky road we have to ride on. No matter where you are in this world once you have a child that is disabled.

    But you are great and Charlie is gorgeous and you are also right EVERY CHILD NOT ONLY CAN LEARN BUT HAS THE RIGHT TO BE TAUGHT!!!
    Sorry that is my pet peeve.

    Have a great weekend

  11. Noah's Mom says:

    I'm in! I would love to hear ideas, lesson plans, and activities to help my little guy learn learn learn! Very exciting and uplifting…it does take a village!

  12. I can't say that I have tips or advice, but I am a HUGE fan of Bird on the Street–and I'm just waiting for you to make a fan page for Charlie, because I'll join that too!

    I love your take on…everything. I wish everyone had your optimism and drive. I absolutely believe that the right teacher with the right attitude can help any child reach his or her full potential. Sounds like you have found your calling–or maybe your calling found you!

    BTW, loved the photos at Disney World! I'm still not brave enough to take my kids. And the post about enough sleep? Too right.

  13. I 100% relate to this post. I completely feel like I was born to teach and advocate for my son. I dont have any teaching experience under my belt but I am so willing to learn. I love your blog and your awesome ideas. I will definitely take you up on your offer to ask questions (and to "steal" ideas) Thank you! Thank you!

  14. Katy,
    Wow! I could have written this post one hundred times over. I related to everything about it. My Emma is six, and she is terribly bright. It takes a lot of work on my part to pull it out of her. She has to hit switches or touch answers, and I have to give her time to tpye things out or select from multiple choices… or even wait for her to answer with her language. This is something that I know the school does not have time to do. Because I know how bright she is and because I also knew that the schools were not equipped to meet her needs, I am home schooling her. This is something that I thought I would NEVER EVER DO!! I have also taught school previously–just not to special children like my Emma. I could not stand the thoughts of her being at school and not getting what she deserved. It was a big leap of faith on my part to home school her, but I felt so strongly about her potential that I couldn't see it working any other way. Like you, I could have fought–but for what??? More things, more tools–that no one would have the time to use with her or even know how to manage. This is a new frontier. Some people are so lucky to find that right fit for their children in schools. Some of us have to do it own our own. Yes, it is a tremendous responsibility, and I do think you are up for the challenge. I look forward to seeing your educational adventure with handsome Charlie unfold. Thank you for this post! It was such personal confirmation for me and the hard choices that I have had to make for my child.

  15. Lady Ren says:

    Great post- I found you via Dani G's link.

  16. Gina (Mannyed) says:

    Katy!! I so feel your drive! I know you and Charlie are in for big things! I can feel it!

  17. perfect post for me today. we just had drake's first IEP transition meeting. after reading the previous posts, i think we are lucky to live where we do. our school district has several preschool classrooms in public elementary schools for special kids. the coordinator listed 3 or 4 schools within 10 minutes of our house that could work for drake. these would be preschool classrooms that are all special kiddos, but grouped by their needs. she said there is a classroom at one school that specializes in kids with assistive technology devices, a classroom at another school for blind kiddos, etc. not sure how drake will be placed, but until he is ambulatory, he will be in one of they types of classrooms. i hope we love it and it works for him. i left the meeting feeling better than i expected about it, though. will have to wait and see what the classrooms and teachers are actually like.

  18. this post is timely for me too. we are currently looking at preschools for fall. Our EI therapist really wants Miles in a "typical" preschool setting because she thinks he will gain alot from it. I'm really worried about inclusion though & even thinking about paying my nanny to go with him..(if the school would even allow that). Thanks for posting this. I can feel your determination & I'm really excited about learning & sharing ways to teach our amazing kids.

  19. You dont know how much I needed the first four sentences of your post. I'm a fan, a follower, heck I'll be a stalker:) Sending my Little Man to school scares the heeby-jeebys out of me & he's only 18 months. I've got alot of work to do.

  20. Hi!

    I found your post through Dani's linked post. I am a special education teacher who teaches students with Severe Multiple Impairments in Michigan. All of my students are non-verbal and wheelchair bound.

    I can not imagine what you parents are going through…what a horrible experience! I will join the FB if it is alright, and am more then open to receiving questions/comments etc.

  21. luckeyfrog says:

    I love hearing about your lessons. As a (regular ed) teacher, I feel like I learn a lot from your ideas and your perspective.

    There's a boy at my school who was sent here for 1 year. He's in kindergarten, but doesn't spend much time in the general classroom. He goes around the school ducking in to talk to his favorite teachers (who have been working with him on knocking before he comes barrelling in). He earns time on a Sit and Spin when he does well.

    At his previous school, he was a problem child. He was only supposed to be here 1 year, but everyone in the teachers' lounge is worried that our little Rudy will be moved. He's made so much growth here, and they're afraid that another school won't see him for all that he is. It's been amazing to me to see the entire school embrace this boy. 5th grade teachers, specials teachers, special ed teachers, the kindergarten teachers- everyone does their part to help him.

    I got to cadet teach in a school specifically designed to support students with disabilities. Some of the modifications were little, like having all of the chalkboards low enough for students in wheelchairs to reach them, but they tried to give students with special needs more opportunities to be in a "normal" classroom, and amazingly, the 'general' kids were given this amazing sense of diversity as normalcy. They were so used to it all that they were automatically accepting and treated these kids like anyone else. The school system is consolidating, and I think that school is slated to close. Pretty sad, really.

    I think what you want to do is amazing. Stick with it. Maybe eventually you can write a book about raising your son, or start a charter school that does just what you want a school to do for Charlie.

  22. you're right–it IS up to us! I hope you continue to share on your blog since I'm a loser and not on FB . . . :)

  23. I have a related post in my drafts that I am working on. When reading your post, I feel like I could be reading my own words.

    I am, however, more disappointed in the "professionals" than you seem. I have a hard time excusing them from giving Kelsey the benefit of the doubt and for taking "professional skepticism" a little too far when it comes to what I have to say.

    I have taken to trying to video Kelsey because it is a lot easier having "proof" sometimes.

    Great topic! I am trying to do the same for Kelsey. You are lucky to have the teacher background!

  24. PrayforNathan.org says:

    Katy, love love love this post. Love the underlying belief in our children, the fire, the determination to figure things out – not just for yourself and Charlie, but with all of us. I know you will not just figure this out, but you will be amazing at teaching Charlie and helping us teach our kids.

    For now I have Nathan in a class with kids with multiple impairments. I am getting ready to fight for him to go to a mainstream school. But he has missed so much school with therapies that I am just biding my time – when Belle is born and we can't run off on so many adventures – it's time to tackle the school thing.

    I am glad you clarified that you are not homeschooling. I thought of homeschooling but Nathan is just too social – he thrives from being around other people, and he's old enough now that he doesnt' want to be with us all day long.

    But now my plan is to "mastermind" his education and then resort to the law/lawyers to make sure his teachers are implementing everything. It's as overwhelming to me as the communication issue, so I am glad you are going to start talking about it – there's a lot to learn.

    I am, however, a big believer in the Waldorf educational model and they emphasize "play" as the main form of education in the early years – 0 to 5 – so I have some tiem before I have to start getting serious.

    I look forward to sharing this journey with you!

  25. Excellent! I suspect your 'class' is MUCH larger than you know, Katy.

    Not saying it has been done well, but children in wheelchairs have been in schools since the beginning of IDEA – I know because I worked with them. Still thirty years is not long in the development of social change. (A whole subspecialty among therapists concentrates on adults aging with CP.)

    There is way more opportunity now compared to then for the children of Charlie's generation to learn and grow.

    I would like for 'institution' to not be used as a bad word. That
    implies a judgment on families that is not deserved. Our 'institutions' provide life and limited opportunities to those who do not have anyone else capable to provide it. Not the choice for people in this crowd, but allow that all are not as capable.