I feel so relieved to announce that we got the call and Laelia is back to full school on Monday!

Thank you, everyone, for all your support and encouragement and referrals and help and emails and law clarifications and lists of contacts I could pursue and prayers and and and… and it worked! We won!

Thank you! Thank you! There were people I don’t know helping us and people I barely know getting mad on our behalf. Then there was our family and friends fighting hard and being that backbone to our life that keeps us standing straight instead of slumped over, defeated by the day’s battles.

I was surprised to have to fight this battle. I was surprised by the lack of information I had a mere two days ago because of the ignorance of some of the professionals I had to rely upon. I’m depressed I have to be “that mom” for many years to come. It looks like such a long, hard road ahead from my perspective.

I had geared up for this long, drawn-out war only for it to be resolved in two days! But I’m not certain it was due to a realization that what they were doing was wrong or illegal, but more likely because Laelia is such a model, well-behaved student. So more work has to be done. With the help of an advocate who’s sister found us, I’m hoping to spread awareness and education to the little school my daughter loves. I’m also going to see if Laelia needs more support in the form of an aide, and then I plan on being very obnoxious until she gets one.

So why was this so illegal or wrong? Below I quote my new-found advocate:

***
I was just reading over your letter and you were quoting the ADA- this is a start and does cover education..
However, most importantly when addressing the schools you want to look at two laws specifically that outline your child’s rights..
These are IDEA ( Individuals with Disabilities Education Act) and FAPE ( Free Appropriate Public Education).and section 504 of the Rehabilitation Act of 1973
FAPE: Under Section 504, FAPE is defined as “the provision of regular or special education and related aids and services that are designed to meet individual needs of handicapped persons as well as the needs of non-handicapped persons are met and based on adherence to procedural safeguards outlined in the law.” Under the IDEA, FAPE is defined as an educational program that is individualized to a specific child, designed to meet that child’s unique needs, provides access to the general curriculum, meets the grade-level standards established by the state, and from which the child receives educational benefit.
To provide FAPE to a child with a disability, schools must provide students with an education, including specialized instruction and related services, that prepares the child for further education, employment, and independent living.

Rehabilitation Act: Section 504 states that no otherwise qualified individual with a disability ( YOUR DAUGHTER) in the United States, as defined in section 705(20) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance (HEAD START!!) or under any program or activity conducted by any Executive agency or by the United States Postal Service.”

***

From my talk with the principal, their view is that it’s a matter of protecting the teachers and making sure there’s enough care for Laelia. An admirable goal, but that goal isn’t reached by kicking out a student, it’s reached by fighting for the resources we need for this student. (Especially when you’re federally funded and she’s a new challenge because of the treatment for her disability… that’s discrimination!)

And I’m so awed by the fact that now I know if this ever happens again I have the full force of all of you behind us! I had this flood ready to be unleashed! Thankfully I never had to use you or you all would have been a sight! They wouldn’t have known what hit them! Haha!

It’s been so emotional for my husband and myself since returning home. Having to take four planes across the country for major surgery adds this punch to the experience that leaves us emotionally fragile for weeks. Not a good time to kick my daughter out of school, because after what she’s been through does anyone still think I’ll let anything bad happen to her? Seriously?!!

Ugh!

You know, Laelia’s disability has never been the hardest part of this journey.

(I wrote this letter to a specific advocate today, but if anyone knows any other San Diego lawyers or advocates that could help me, please let me know. I have a feeling I could use one for the future as well, and of the two lawyers I know, neither specialize in this. I’m also still waiting to hear back from Mona in the SEEC program to see how she can help. Thanks everyone for the suggestions and support! I hope this letter is more clear than my emotional blog ranting and answers any questions anyone may have had as to the specifics of this case.)

Dear ########,

I don’t know what to do, but I realize I need an advocate or lawyer, and I may be needing it long term.

My three-year old daughter, Laelia, goes to Head Start on Home Ave. She has arthrogryposis. On November 16th she had surgery (her third major surgery). Head Start has known what day the surgery would be for months. Not only did they know about the surgery, but it was mentioned in her IEP before she was even enrolled and they KNEW she’d be returning in casts. She had surgery last year and was back in school in casts (it was Early Head Start at that time). Casts are unfortunately part of my daughter’s life, and will be, on and off, for some time.

We told everyone (principal, teacher, teacher’s aide, random teacher in that classroom her car seat is always in) that she would be returning to school in casts on December 1st. We actually came back December 2nd because her immersion teacher was out with the flu on the 1st and wanted to be there for the transition. Well on December 2nd my daughter and her daddy stayed for the sum total of one meeting where they found out that the principal wouldn’t let her come back to school full time. Then they went home.

We were told that we can come back part time and only stay until my daughter’s special needs aide leaves for the day at 12:30 pm. (Apparently her IEP only covers her for the first part of the day.) We both work full time and have had to put our bosses on notice that we will be taking major, unplanned time off after lunch.

Today I found out the principal “may” let her return to full day on Wednesday (next week, the 8th) “if” she feels it’s appropriate. The issue, she told me today over the phone, comes down to having no extra aide after 12:30, no money in the budget to get one and her IEP doesn’t cover one during the second half of the day.

I looked up the ADA website and found this: SEC. 202. DISCRIMINATION. 42 USC 12132. “Subject to the provisions of this title, no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.”

I didn’t know they could just kick her out when she became difficult because of her disabilities. Can they just deny her a place among her peers because her disability requires an aide?

She has a surgery planned for next year and I’m so scared they will do this to us again. My daughter is upset because she loves school and has begged me to go back. I want to make sure this never happens again. Is there anything you can do for us? Or can you refer us to someone? How much would this cost us to fight?

Right now my little girl is being kicked out of school when her aide leaves for the day.

Thanks.

Today my daughter got kicked out of preschool.

I knew once she joined that gang and started doing drugs and bringing knives to school that it was only a matter of time. Oh wait, my daughter wasn’t able to stay at school today because SHE’S DISABLED. More specifically, she couldn’t stay at school today because the treatment for her disability is serial casting or post-surgery casting, and casts are apparently, all of the sudden, out of the blue, not okay.

Today my husband attended a meeting with Laelia’s principal, PT, immersion teacher, classroom teacher, disabilities coordinator person, etc. They, as a concession, could take her back for half her contract hours (half days) and then kick her out when her aide leaves for the day at 12:30pm. They’ll “see” about more than that. When I say “they” I’m referring to the principal more than anyone. And they can do this because her IEP only covers half the day.

Today my husband said he felt as if he failed his daughter.

Today we found out that our special education coordinator, who we felt was Laelia’s advocate alongside us, no longer has that position.

Today I comforted my daughter because she was upset and she wanted to go back to school. I had to explain that right now her wheelchair and her casts have made the principal of the school uncomfortable and we have to wait until someone can help mommy and daddy convince them that she’s a great student!

Today I had to research the ADA (Americans with Disabilities Act) to figure out if they can deny her what she would have if she weren’t disabled.

Today I Googled lawyers, not for the first time, that can maybe help me enforce her contract hours at school.

Today I left work to try to play “school” for my daughter. Today we tightened our budget.

Today I wondered how we were stupid enough to get ambushed like this. They ALL knew about this surgery since before the school year started! It was mentioned in her IEP for crying out loud! There was clearly a 100% chance she’d come back to school in casts. I reminded everyone at that school that we’d be back in casts on December 1st before we left for Philly!

It doesn’t make her any less mobile than before, by the way. Casts actually protect her better than next month when she doesn’t have them!

She had surgey and casts last year and went back to school! She will have surgeries and casts and serial casts all her life and cannot just NOT go to school because you don’t want her there, people!

The principal did pull me aside before we left for Philly to say they had “concerns” about not having enough help, but I thought that was being worked out. And I never thought they could do this! Do they not realize that if they can bully (YES BULLY) us out of school based on the fact that our daughter is “hard” on them, then she’ll always have to deal with fighting for her rightful place alongside her peers? If they can’t afford watching her, and that line of reasoning works to keep her out of school, then they can blame the budget or economy every time they take something away from her!

SEC. 202. DISCRIMINATION. 42 USC 12132. “Subject to the provisions of this title, no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.”

What would they do if a typical child came back in casts?

School obviously is too much for her and too hard for them, but Disneyland is fine. Um… yeah. They may not want her, but Mickey will take her!

Cold day at Disneyland.

It’s a Small World After All!

She sang along!

L for Laelia!

The one drawback to having a wheelchair instead of a stroller is when she gets sleepy she can’t recline.

Today I treasure my beautiful, bright and well-behaved girl.

Today I’m dizzy, nauseated and mad.

Today I promised myself I would treat this as a growing experience and learn how to communicate and educate the people I feel are persecuting us for their own ease. Today is a challenge, not a setback. I think I believe that.

Today my daughter asked a billion times to go back to school. She was only able to stay a short time and she’d been looking forward to going back since her surgery. She tried convincing me with reason. She tried “please.” She promised she’d be nice.

Today I cried.

Today I wiped my eyes, took some nausea medicine, pushed my glasses up my nose, rolled up my sleeves and sharpened my claws.

This is a battle I cannot lose.

Oh yeah!

They told me to give the school workers instructions on cast care since they won’t know what to do. Done.   It contains such gems as: “Toes should never be blue,” “Do not get wet,” and, “I went to Disneyland in full casts on 11/28/10.” My diagrams are terrible and include lifting and propping. Plus on the left leg are full diaper instructions. Now there are NO EXCUSES!

Let me explain.

So getting Laelia back to school has become difficult. The plan was to go back December 1st. But I also knew I was suppose to call both Laelia’s school PT and her immersion teacher the day before going back to make sure they would be there to help with the transition. We also had to give the bus a day’s notice. But Charley and I called November 30th a few times and couldn’t get in touch with the immersion teacher. (Turns out she had the flu and wasn’t there.) We decided (last second) to get a sitter for December 1st and hope the school didn’t call like crazy wondering where she was. So now her first day of school would be on the second of December instead of the first.

Laelia talked about school like it was Disneyland (which we did on Sunday). She was really looking forward to seeing “my Genny who is my friend” (who is an aide she adores) and all her friends whom she would list over and over by name. She also LOVES her teacher, Ms. Wilson, who is on par with Mickey himself.

Well when I got a hold of people on December 1st I started to get the run-around. First we needed a doctor’s note, one that we had never been told about, from the Philly doctor! They were firm on this point so I emailed the doctor who, little did they expect, is WONDERFUL and emailed back immediately! He said she was fine to go back to school, just no gym. (Ha ha.) Then when I said I got the note, it was no longer that important and now having an aide in the afternoons was a concern. Wait, why wasn’t it a concern for the last few months when we ALL knew she would be returning on this day (or now it was the next day) in full casts?

Ugh.

Then they were worried about her casts themselves. We would have to tell the teachers not to get them wet. (Let me just say I have full confidence in her teacher’s common sense. This was just one more thing.) Thus the full instructions written on them in the picture above.

Then they weren’t sure they could bus her and her wheelchair to school and probably couldn’t work it out before she’d be out of casts.

Then they called back and there were now “safety tests” she would have to pass that the principal came up with (out of the blue when everything else wasn’t keeping us away!) before Lali could come back to school. What tests? Whose tests? Who would judge them? What was going on?

So after multiple back and forth phone calls with different people, I began to suspect they didn’t want her back to school because of the liability.

Now this is where I get on my soap box, folks.

1. My daughter has contract hours.

2. My daughter has an IEP and this was talked about in the IEP well before she was enrolled.

3. My daughter will have, as part of her life, casts. Treatment for arthrogryposis is serial casting or post-surgical casting. This is her life. This is a direct result of her disability. Um, anyone heard of the Americans With Disabilities Act… *cough*

4. If I allow anyone to keep my daughter out of school or deny her the rights of her peers because I was not strong enough to fight when they tried to convince us not to bring her back or because they made it “too hard,” then I have failed my daughter! If she doesn’t go back to school in casts, then how can I keep her in school for the rest of her school career when casts are a part of her life?

5. This is wrong.

Okay I do understand the other point of view. This is hard on people. Lali requires someone to change her diaper. She requires help if her chair or gait trainer get stuck. But I cannot bend on this issue, because then I don’t have a leg to stand on when I ask she be back in school after her surgery next year and the year after and a few years after that!

Ooh I just hate being the bad guy! I hate being *that* mom. I hate when people don’t like me. I hate when I have to push to get my daughter what she needs.

I want to be a nice, soft-spoken person who sees this whole thing as a way to educate people about arthrogryposis. I hope this is a learning experience to those without much experience with disabilities.

I heard back from the immersion teacher right before my doctor’s appointment. (I have episodic vertigo.) Laelia is going back to school tomorrow, but we’re sending her daddy with her to show the staff how to lift her, etc. Another schedule change, sigh.

This has been such a hard week on us in general. Here is my week in picture form:

Can’t get new ones until January. So super glue to the rescue!

Five days of episodic vertigo. Had twenty-two attacks today before lunch. I’m always dizzy and nauseated, but it doesn’t keep me from going to work.

Self medicating.

Okay here are some cute pictures:

The stuffy council is now in session!

Daddy can never name all the Dr. Seuss “animals!”

Princess Laelia is ready for Disneyland!