Back To School Blah Blog

Leah and Lucy went back to school today. Shouldn’t I be jumping up and down?

Leah was up at 7 AM and made the rounds, waking us all up. “It’s the first day of school!!” She whispered excitedly. I believe some kids are built for school, and Leah is one of them. She wakes up, makes herself breakfast, gets dressed, brushes her teeth and is on her way to the bus stop, even if the rest of us are still in bed! While in class, Leah hurries to complete each assignment so she can get back to whatever book is in her desk. She comes home, does her homework and then plays with friends.

Maybe the reason I am feeling so melancholy is that I am channeling Lucy. Lucy is NOT built for school, but please don’t tell her I said so. Most of mainstream public education was not set up for “the Lucy’s” of our world. I wouldn’t want to sit (literally) from 8:30-3:30, yes she sits at recess too. She cannot do the work as quickly as the other kids and it really does take more of her energy to complete the same assignment. She is always rushed and always behind. Sometimes she just puts her head down on her desk, refusing to do any more. And does everything really need to be signaled with a LOUD, jarring bell? The poor kid practically leaps out of her skin every 45 minutes… and then there are the fire drills… need I say more? I am actually going to send earplugs for her this year!

And it’s not just that Lucy isn’t built for school, but school is not built for Lucy. Since she is in a big wheelchair, she usually ends up at the end of the line, when her class lines up. Her new classroom is set up with 3 long rows of desks, each row behind the next. Lucy can’t maneuver in between a row, so she is at the back of the class. She can’t reach a sink to wash her hands, so I send hand sanitizer. She can’t reach the water fountain, so we send water bottles. She can’t get her bin out of her desk, hang up her backpack or get it down, write, feed herself or go to the bathroom like the other kids, so she has an aide, Sally who is incredible… Lucy would do better if she could have Sally as a full-time aide, since she struggles with transitions but the district refuses to pay benefits and retirement for one full-time aide, so Lucy will have two part-time aides. And like clockwork, every week on the day that the aides transition, I will likely get a note sent home saying, “Lucy had a really hard day, she refused to work and cried a lot.” If the district lived it, like we live it, they would pay benefits, retirement and more.

This morning, Leah was off to her bus stop by 8:10. The girls go to the same school but cannot ride the same bus. Leah rides the bus with all of the kids in our neighborhood. It is not an accessible bus. Lucy’s bus has a lift in it and it is also full of kids who have different disabilities who are not mainstreamed, who do not go to her school. Having kids screaming, hollering and jumping around doesn’t work for Lucy at all. She hates the bus. We have asked the transportation office if Leah can ride with Lucy. At first we were told, “No, Leah has to have a documented disability.” (“Huh? She does!) So, now Leah rides with Lucy sometimes, and like any kid, Leah wants to ride with kids she knows, kids she likes and kids who go to her school and understandably Leah doesn’t want to be late to school every day. Yes, Lucy’s bus gets her to school late and picks her up from school early EVERY single day. Schools make a big deal out of being late, but they wave it entirely when it is their fault, which may be fine in theory but would you want to be the kid in the wheelchair who rides a bus with no one you know, who arrives to school late every single day and sits at the back of the room? Sounds like punishment, not school.

This morning the driver called and told us she would be arriving at our home at 8:45. Lucy quietly said, “I don’t want to be late on the first day.” We loaded Lucy and her manual chair into the car and took her to school. We left the heavy power wheelchair for the bus driver to deliver later. This is all after Lucy refused to eat breakfast, forcing herself to dry heave when offered toast, smoothie, juice anything. She cried 4 or 5 times about nothing and everything and I can’t blame her.

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About Rachel Coleman

The opinions and late night musings published on this blog are Rachel de Azevedo Coleman's alone, and are not ever intended to represent the opinions and sentiments of any organization or product that Rachel is, was, or will be associated with. Rachel Coleman is the creator and Emmy-nominated host of Signing Time!, the children's American Sign Language vocabulary building series. She is also the creator and host of Baby Signing Time, Rachel & the TreeSchoolers, and Rachel & Me. Rachel now serves as the Executive Director of the American Society for Deaf Children, a 501c3 nonprofit established in 1967 by parents of deaf children. ASDC is the American Sign Language organization for families who are raising deaf children. www.deafchildren.org Motivated by her child, Leah's deafness, Rachel has spent the last 18 years creating ASL products to help bridge the communication barrier between hearing and signing communities. In 2006 Rachel founded the Signing Time Foundation, a 501c3 non-profit dedicated to putting communication in the hands of all children of all abilities. In 2014, the Signing Time Foundation launched a 50-Lesson online ASL curriculum called "Sign It: ASL Made Easy" that is available free-of-charge to families with deaf or hard of hearing children ages 36 months and under. Apply at www.mydeafchild.org. For those who do not qualify to receive Sign It ASL for free, they can find it for purchase at very reasonable rates on www.SignItASL.com. Rachel and her husband, Aaron, live in Salt Lake City Utah. They are parents to Leah who was born profoundly deaf, and is now a senior in college at NTID/RIT in Rochester, NY. They are also parents to Lucy who has spina bifida and cerebral palsy, and recently graduated high school. In 2010 the Colemans were joyfully reunited with Rachel's daughter Laura. Rachel is proud to be Laura's birth mom. Laura was placed for adoption as an infant in 1992 when Rachel was 17 years-old.

33 thoughts on “Back To School Blah Blog

  1. Lucy and Leah are so brave. I don’t think many adults would tolerate what they do every day. We have so much to learn from them. They are so blessed to have you and Aaron as parents, too. We will be praying that things improve, especially for Lucy.

  2. How hard for Lucy! I don’t think I could send my little one through those hardships on a daily basis…I’d be homeschooling. I’ll be praying for Lucy today!

  3. I’m sure there would be many things changed in this world if the powers that be lived it like you live it. I’m sorry that even the most basic things like going to school are made difficult by silly rules. I’m praying that despite the anxiety and challenges, the day goes smoothly for Lucy! And that Leah continues to enjoy school!

    I love the first day of school photos. They are both getting so big…and more beautiful!

  4. It does require bravery doesn’t it? I knew it was harder for some kids to cope with the first day of school and new faces. Hadn’t thought about how we take so much for granted, thanks for the insight. Love the girls smiles! And the pink hair…too cute!

  5. I see someone beat me to the homeschooling… why dont you homeschool her? There are so many options, and coops for children with special needs. It takes work, but that is nothing you have not experienced with how you blessed the World with signing time!

    If you want more information or if I can help you in away by answering any questions please feel free to contact me!

    A devoted Fan of signing time, and friend!
    Angie

  6. To be honest, I don’t know if homeschooling is the answer. Sure, that will obliderate all of these crazy county problems, but there is something to be said about going to class with others your age. That can be supplimented to a degree with extracurriculars, but look how busy your life already is!

    To me it sounds like Lucy’s school/county are being lazy and need a good wake-up call (how about that bell?). And if I’m not mistaken…aren’t there laws stating that Lucy should have access to things like the sink and required schooling hours. That is very much illegal. If you’re up to more work, there’s a good fight there.

  7. Hugs to Lucy! And you too~ sounds like it’s just as tough on you as it is on her, in a different way. I have so much more I want to say, but right now I have to chase a William who is only wearing his pull-up and watching ST My Favorite Things and coloring a huge sheet of paper (and himself!) with *thankfully* washable markers.
    Hugs!

  8. Ugh! Your post made me tired with all the points at which I was infuriated and wanted to fight your school district!! I’m so sorry…”if they lived it like we live it”…couldn’t be more accurate, about so many things in life. Hoping it gets better for Lucy and for you, b/c sometimes it’s even harder for the mommy than for the kiddo!

  9. The pink hair is totally fake. It is a clip-in, all the rage with 3rd graders!? 🙂

    5 minutes from her school is a school that is all special education. It has an accessible playground, doors open at the push of a button, kids get occupational therapy, speech and physical therapy and I hear they even have full time aides. I think the district would prefer that Lucy go to that school rather than her neighborhood school. But the issue for me is that although Lucy has some physical disabilities, mentally she is completely there. She doesn’t even really see herself as disabled. She’s a regular kid in a wheelchair, who needs some extra help with daily tasks. If she was in 3rd grade at the other school, she would not likely be challenged like a regular third grader. Lucy went to Special Ed Preschool for two years and it was close to devastating. She stopped talking because no one else was verbal. Her teacher didn’t know that Lucy could talk until December, when I mentioned something about Lucy singing a song at home. Her teacher looked stunned and said, “Lucy can talk?” Lucy picked up a lot of her not so fun behaviors like screaming at the top of her lungs so that someone would just take her out of the room and into the hall where she could escape the racket and have a little peace and quiet.

    I have thought about homeschooling, but I really think I would be the worst! Besides, Lucy has really grown in leaps and bounds by being with kids her age in a mainstream school. We pushed for her to mainstream in Kindergarten even though the “team” thought we were making a big mistake. Positive peer pressure eliminated most of her disruptive behaviors, I mean suddenly, no one else was screaming, biting and throwing fits – it was no longer the norm.

    As I said, Lucy is now in 3rd grade and every year there are a number of parents who share that they are so disappointed that their student is not in Lucy’s class. Having Lucy with typical peers is so good for her and so good for her classmates.
    Rachel

  10. Where to start? I definitely feel for you and Lucy! I have to agree that the bus situation is completely not right—getting her to school late and picking her up early should not be acceptable. When I was teaching and the bus drivers for our handicapped accessible bus asked us to bring out the kids early, I told them we would bring them out when school dismissed for everyone. After that, my students were the last kids to get on the bus, but at least they completed their school day like everyone else.
    As hard as it is for you and Lucy and the family, please feel confident that you are doing the right thing having Lucy in a 3rd grade classroom where she can learn all that she can and be with her peers that are positive models for her behavior. Hoping for the best for ya’ll this school year

  11. That is absolutely horrible!!! Why do they get her to school late? How on earth do they excuse it?! And why on earth do they pick her up early?! Can’t they space the desks out a little more so that she can sit in the front or middle row at least part of the year? It seems like the school has no desire to accomodate her at all… but I’m SO proud of you for not letting them drive you and your child out of the school where you see that she’d learn the best! GO RACHEL!

    I hope that her anxiety lessens after the first few days, and this year will be better than the last few.

    Hehe and if it helps her at all, tell her one of your bloggers said her pink hair absolutely ROCKED!!!!!!!!!!!

  12. Wow, sounds like getting back to school is tough for your family. No wonder you’re feeling gloomy! Schools don’t really listen to logic, do they? I wonder if it would be beneficial for you to keep a schedule linking Lucy’s behavior to her aide schedule/other outside influences. It seems that there is a direct correlation between her comfort/frustration and her performance in class. You could keep the schedule for a few months and then present it at her next IEP. During PE are there no accessible activities for her? Please tell me her aide is with her during PE!? They should be involving her in whatever accessible activities there are. I know bikes like this(http://www.planetmobility.com/store/handbikes/ambucs/amtryke12/index.html) are expensive, but I’m sure you could find an agency/organization to donate on to the school! Then she could be involved too!

    Sending prayers for happier school days ahead!!

  13. wow! It seems like forever since I’ve been on this site or have had a chance to chat with you all! I’m sorry Lucy is having such a tough time, it’s got to be very frustrating for her. Lucy, keep your chin up and that beautiful smile on your face! I can’t understand why the school isn’t a bit more accomodating for her. Geez, it sometimes seems like we make no strides in offering these kids the help they need to succeed! When are the chats nowadays? I kind of lost track when the days were moved.. between working full time, and going to school full time I don’t konw if I’m coming or going most days. 🙂

    Patti 🙂

  14. Oh, I don’t even know where to start. It makes me sad that she doesn’t get that excitement that most other children have on that first day. I really hope you take that schedule further up in the school district. There is a required time that the students must be in the classroom and the transportation has a responsibility to get her there on time!

    Lucy and Leah both look adorbale, as usual. I hope each day gets better and better for them.

  15. What would I do? I don’t know. I think I would look up what the mandated hours a student legally has to be in school. I would maybe find an advocate (someone familiar with school law, parental rights) especially with a child in Special Ed. on an IEP. Is Lucy on an IEP under what category, OHI? Ideally, what would you want? I don’t think home schooling is the answer in this case. It sounds like socially and academically she benefits from her current placement. What if the special ed. school allowed cross-categorical placement or even a mix with special ed/regular ed? Can you make a list of the pros/cons with the current placement and meet with the Special Ed. director or even with the superintendent? They are terrified of due process and would take the time to listen if you could realistically spell out what would be ideal for Lucy. I think realistic expectations would be a bus that didn’t consistently run late or pick up early, accommodations so that she could maneuver her wheelchair around in the classroom, academically challenging curriculum with modifications given her physical abilities, what else?

  16. How much can a 3rd grader take? My heart aches to read of the struggle that Lucy must cope with, on a daily basis, just to get an education. Lucy has shown a remarkable, and indomitable spirit thus far in her life, just to get to these school challenges. However, I’m willing to bet some days she doesn’t feel like being the girl that everybody marvels, she’d rather be just an average girl that leaves her impressiveness, and rough roads behind. It’s so true, what you said about “if the district lived it, like we live it”. They would do well to experience school and life in general through Lucy, so they could see how she takes it all in. I certainly will pray for her to have the courage and inner strength she needs (and you, her parents need). Tell Lucy she has friends that will cry with her when she wants to cry, and cheerleaders to lift her up when she needs lifting. She is quite an impresive young lady.
    PS. Congratulations to Leah for being excited about school, and to Lucy for feeling like she’s a regular kid in a wheelchair, who needs a little assitance now and then.

  17. I am with grojas. The school districts will do just about anything if you threaten with Due Process and you have a ligitimate reason. As far as not being able to reach a sink or drinking fountain, that is very wrong. All public buildings are supposed to be zoned to fit the ADA laws. That needs to change. Also, I wish that all the people in my classes could understand what you are talking about. I think the first day back at classes, I will pull up this blog and share it with the others in my classes. We always talk the hypothetical, but never a real life example of what these kids face. I think it would be good to go over what an actual experience is like. Thanks for posting it. Hopefully with this post and me working it out to my fellow students, there will be a few more accomodating teachers to help parents like you who are pushing for things like this for their students. Good Luck. I know it must be hard. I have watched the struggles of my own students and they are all in a SpEd room, no mainstreamed. I know from going into their inclusionary classrooms with them, there are some teachers who are really great at including them in whatever it is that they are doing and others who can’t wait for them to leave so they can carry on and ignore them while they are there. I feel for you. I have absolutely no idea what it must be like for you, but I hope it all turns out in the end. One other thought, like I was saying, some of the teachers were really good at inclusion and others are not. Would you consider even moving classrooms and teachers so that Lucy gets more help and more inclusion. I don’t know when your IEP meeting is, but I would raise these things as concerns. Also, know that you can have more than one IEP meeting a year. It is not common, but you can do it. Or even just go talk to the teacher and principal BOTH at the same time and see what you can work out as far as your concerns are. Know that the teachers are also fighting the district too. The teacher I work with actually was having such a hard time with the district she threatened to retire so they changed things really quickly. I think that would be the case with the Due Process talk. I think it would solve some of the issues if they remain unsolved. Good Luck!

  18. Rachel-

    Please consider contacting the Disability Law Center at 800-662-9080.
    Services are free and you can speak with an Education Specialist about Lucy’s rights, appropriate accommodations, transportation, etc.

    I have used the DLC in the past and they have been helpful as I’ve advocated for my son who has CP and is deaf.

    I do think the school needs to make some changes to accommodate Lucy.

  19. Talk about stress at the beginning of a school year! I hear you on feeling for your daughter, Lucy. I know you are so proud of her and what she is faced with daily and are such a positive influence on her meeting these barriers with courage and persistence. How absurd that the bus can be late in getting her to school everyday…would that be acceptable in any other situation w/o the problem being addressed and fixed in a timely matter?
    I appreciated your explanation for placing Lucy in the mainstream school – this is what is best for Lucy and learning. All of these obstacles are preparing her for life! Easy access and compliance with ADA laws won’t always be met, but she will continue to move forward.
    Leah sounds so much like my oldest who also is very good about getting up and getting ready and encouraging everyone else to do the same..loathing to be late to school…and reading all the time too.
    I’ll be continuing to check your blog hoping to see good news of forthcoming changes! I especially like the idea of ear plugs.

  20. I came to your blog site after a blogging friend of mine read my own post from the other day and told me about your day as well. I have a little 4 year old boy with “special needs” who is very bright and we are having difficulty right now agreeing with how his school would like to continue his “education.” I find it very sad that schools can single a child out for being unlike the other children, but we expect these peers to be accepting. How are children going to learn to be accepting when the role models they are looking up to aren’t?

    I am sorry that Lucy has to deal with such upsetting issues at school. It would be very hard to go to a place every day that you do not feel welcomed. My heart breaks for her and what she has to go through every day. I pray that soon our children will get the understanding they need to make it through our communities as well as our school systems.

    www.kadenboeckman.blogspot.com

  21. Tuesday I’m sending my special needs five year old off to kindergarten. He is SO excited. I am SO nervous! What if it isn’t everything he is expecting? What if it isn’t everything they promised us?

    My heart hurts for you and Lucy. I agree with the other commenters that you must have some legal pull to get some of those issues changed. It’s unbelievable that they make her put up with that stuff.

  22. I’m so sorry to hear all that Lucy has to go through just to go to school! How frustrating for her. It certainly doesn’t seem right that they get her to school so late, I wouldn’t want to show up late every day either! It seems like they would have to make some other arrangements to get her to school on time. I hope she has a good year.

  23. Well, I was going to suggest the homeschool thing to. I do it with my kids, just cause I wanted to, not because of any problems with the school. I, of course, don’t know Lucy personally, but she seems like the type who would thrive in homeschool, and then maybe just one extra-curricular activity a week to get in the “positive peer pressure” thing.

    Obviously, no one knows your kids the way you do though, so you know what’s best for your own kids! 🙂 I hope something can happen to make school a bit more enjoyable for Lucy though. It seems like she has enough to deal with on a daily basis without everything being made even harder! She’s always so smiley and joyful on the videos…I like to think of her that way, not aggravated and unhappy…it just doesn’t seem very “Lucy-like”.

  24. That is too bad about the bus situation for Lucy. Last School year we had a terrible problem with my son’s bus arriving late to pick him up then being late to school every morning. We went months and struggled with him being ready for school on time – with coat, back pack,and then wait..wait…wait.. no no bus. He would take off backpack& coat and put in signing time video (Very Cute) but then it would be mad dash when bus would arrive and he would fuss about going to school. Once he got there it was fine – but I hated the ordeal every day. I ended up calling the bus supervisor and after a few calls to his teacher to confirm the lateness we got a new bus driver and she was the best. We’d be ready and the bus was there! yeah! My husband and I would laugh that we thought the bus driver was stopping at Dairy Queen before picking up our son! It is at the top of our street between the school and home. There just was no reason for her lateness every day. If there was a sub driver they could do the pick up and deliver to school on time. I am nervous about this year – school starts in 2 days for us in Oregon aned there is a different driver and new school for my little guy Andrew who has Down Syndrome. Signing Time has brought words between our son and the family. It is so easy for us to learn the signs from your videos! So excited to see you at the Buddy Walk!

  25. I can relate to your daughters in this area. I have a twin sister with cerebal palsy. I am ‘typical.’ My mom fought the school system when we were younger (we are in our 20’s now) for my sister to be included in a mainstream classroom, to ride a school bus (they wouldn’t even send a special needs bus to our house until we were in high school…but they did let me ride with her thankfully!), to have an aide, and to NOT be put in a special education classroom. She also had to fight for her to have special privileges so she could complete her school work like other kids such as longer time on tests and open book tests. When I started driving we even had a situation with getting a parking pass for a handicapped parking place so my sister wouldn’t have to walk or roll so far. It was an uphill battle, but my mom always fought for our lives to be as normal as possible. In some ways that backfired, because my sister now has an eating disorder on top of all of her other challenges, thought to be brought on by not accepting she and I would take two different paths since we were always told we could do anything…it was her way of having some control in her life. The truth was that she couldn’t do everything she wanted because of her challenges. She could give it all she had, but in the end she was not always successful. My sister is currently in a treatment center, hopeful to be successful with this attempt at recovery (round three). I hope that you have a better time with your daughter’s school system than we did. 🙂 By the way, I am married now and have a 14 month old daughter and she absoulutely adores Signing Time videos!

  26. Just a little note!

    Lucy is not made for school and the school is not made for her.

    But you are!

    You are her very best teacher.

    Keep her home!

    Our sixth child, Heidi (2), has DS and LOVES to learn from you and learns A LOT.

    You ARE it!

    Lilly

  27. It’s so frustrating to hear that schools are such crazy places for students to learn no matter what disability they have. Thanks for your positive out look and willingness to be excellent supportive parents for your girls. I appreciate your willingness also to have a birds eye view of your life as a mom through your blog. I admire you and appreciate all that you do through signing time! Keep persevering!

  28. One word: Attorney. What the school district is doing to Lucy is inexcusable and it is discrimination. She is not having equal access to a meaningful education, which is her right. It is time to bring out the big bad word that all districts hate. Most likely all you will have to do is request an IEP meeting (you should be able to do that at any time) and let them know your attorney is coming with you and you want the principal to be present and that should get their attention. Remember, the fuss you make for Lucy could change things for many other kids. Don’t give in until they have fixed it all: Transportation, accessible classroom (should include sinks, desks, PE time, all of it) full time aid etc. They will tell you they don’t have the resources for every kid to have those things and you just keep repeating that your child is entitled to a free public education in the least restrictive environment and that you can’t worry about the other kids, that is their job. Your job is to be Lucy’s advocate and you won’t stop until she gets what all the other kids have. OK, there is my rant – blessings to you and your two beautiful angels. They have inspired both of my kids on the spectrum to start talking. In our house, you are the signing mama! We are hoping to see you when you come to Oregon. Safe travelling and good luck with all of the babies. Cynthia

  29. That post made me cry! Lucy’s rights are totally being trampled and I do think they are trying to bully you into the other school. Hang in there and keep on advocating for what IDEA 2004 calls a free appropriate public education in the least restrictive environment. You might want to check out wrightslaw.com. BTW, the pics of Lucy and Leah are beautiful.

  30. jmeyerphotography: Your comment really struck me. I read it to Aaron as well. It shed new light on some of the things we say to our children who have exceptional needs. In the brightest light, I saw myself as a liar with really great intentions. Whew, try THAT on as a mom. But I have to thank you, you have no idea how that impacted me. I would love to devote a post entirely to the issue you brought up.

  31. Wow. I would love to give Lucy, and you, a hug.

    I’m scared for what my family will face in the future and I’m trying not to think too much about it. Sigh.

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