Routine Doesn’t Just Mean Schedules

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I know, sorry, that’s a fairly confusing title for this post. But what it boils down to is my daughter Carrie’s routine. She was diagnosed very early, and I mean, “unheard of” early. She was only 13mos old when we officially knew there was some kind of issue at work, and by 15mos had already started Early Intervention and were working on a formal diagnosis of autism. One of the things I knew would be the kiss of death for any kind of “normal” future for her would be if we let Carrie live within some kind of strict routine.

It’s weird, I got ripped apart by some of the reviewers of my first book, Autism By Hand, for this very topic. And truly, I do understand that the need for routine in people with autism can stem from a complete fear of what’s going to happen next. No, I don’t want my daughter to live in the grip of absolute terror (as some people suggested in the reviews), but at the same time, I’m not doing her any favors if I let her believe that this routine will remain in place for the rest of her life.

Although I hate the comparisons to Rain Man, think back to the problems he faced outside his institution. It’s Thursday, it’s fish stick day, I have to have six fish sticks  which I eat while facing north and watching television. Who can live like that? What kind of life is Carrie going to have if I let her believe that it’s realistic? There’s a reason Raymond was in an institution…it’s the only place where routines like that are even remotely possible. And I fully believe that letting Carrie slip into the comfort of a rigid routine would mean making her destined for life in some kind of facility when she’s older.

Fortunately, it didn’t take too many years for Carrie to not only NEED a strict routine, but also to even be excited about some of the new possibilities each day presented. Now, she eagerly asks what we’re going to do today. Sure, there might still be some level of fear behind her question, but at least she can put on the persona of excitement about getting to do something different.

One place her lack of routine has come in very handy is her diet. She is on the GFCF diet for autism, so of course, her list of acceptable foods is very limited. And while this is another aspect that reviewers wanted to crucify me for, we never let Carrie have food routines either. She has to at least try new foods. Sometimes that new food is cotton candy, other times it’s a vegetable. As a result of our views on food routines, (and as a non-fish eater myself) it’s mind-boggling that Carrie now LOVES salmon, catfish, shrimp, and crab legs, but screams if you come near her with a banana. Last night’s dinner of steak tips, carrots, and potatoes went really well until it was time to eat four bites of the potato. Seriously? You can eat steak tips in marinade, but not potato?! But she ate her four bites, declared that she still didn’t like it, and happily went off in search of her dessert.

By preparing her now for this kind of flexibility, we’re helping her to have a fuller life and one that will be less upsetting in the future. Sure, the day will come when she’s an adult and says, “I don’t ever have to eat broccoli again,” but now the day will never come when she’s sitting in a hospital-style cafeteria for her meals because she simply can’t adjust to not eating fish sticks every Thursday.

School’s Out… Now What Time Is It?

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School is out and our day camp experience is over, so now is the blessed time to just loll about, going to the pool, catching up on naps, reading a couple of books…you get the picture. Carrie is already experiencing her first summertime obstacle: clock awareness.

Since she struggles with the concept of time, she’s hungry, thirsty, and sleepy at all the wrong times, as evidenced by the fact that she woke me up at 3am wearing her swimsuit. Lunch has now shifted in her world to around 10am, and she needs “fourth meal” at 11pm.

Carrie has always been fairly good about her routines, with just the right combination of willingness to engage in the right activity at the right time (such as SLEEP!), but still being somewhat flexible as situations came up. Last night’s tearful 9pm meltdown because she couldn’t find her squirt gun wouldn’t have happened during the school year, because she would have been asleep at that point.

Another struggle Carrie’s always had to deal with is the calendar. School is out, right? So why aren’t we at the beach? The fact that the beach trip is at the end of July has no bearing on her agenda. We got to the beach when we’re not in school, and we’re not in school. So let’s go.

Luckily, with school out, classroom and school supplies are really cheap. I bought a clearance dry erase weekly calendar and now sit down with Carrie to write out what we’re going to do, and when. I would LOVE to tell you that it’s worked like a charm, but I think it’s a work in progress. Just because we wrote “go for ice cream” on the chart STILL doesn’t mean we’re doing it today.

And I can promise you we’re not doing it at 2am.

If You Can’t Say Something Nice…

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Yes, it’s been a while since I posted anything because I was far too angry and tired over Carrie’s IEP process. Incidentally, it’s not over. We’ve had no less than seven IEP or school system meetings about it this year, and we’re not even close to being finished. The entire process was so soul-crushing that I didn’t have the energy to share it online, and the very last thing I wanted to do was drag people down with our tales our academic woe.

But all of the struggle aside, school ended this week and Carrie is home for the summer, along with older sister Ann. While summer vacation is nirvana for any student, mine make even more of it. Today was the annual Stripping of the Beds, where the girls take the sheets off their beds in their bedrooms and leave them off for the summer since they’ll be sleeping in the guest room every night, taking turns picking the nightly movie. We went to the pool for the first time today, too, which automatically entails having to stop for popsicles.

So while our attorney and the school’s attorneys battle it out for what Carrie’s services will be as she enters middle school next year, we’re just making the most of it and enjoying the time we have right now when we don’t have to be afraid. It will only last for such a short time.

“You’ll Have to Sue Us to Get Services for Your Daughter”

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Yes, my friends, that title is in quotation marks because it’s what the school system’s director of special education said to me yesterday after my daughter’s fifth IEP meeting this year. They initially cut her services to almost nothing and we fought to get a few more services put back in place. But when I finally said, “What do I have to do to get her parapro reinstated like she’s had all this time?” the answer was that I had to go through a due process attorney. I restated it, asking if she meant that I had to get a lawyer and sue the school system, and she said yes.

This is a school official saying to my face, “We’re not going to do anything that the court doesn’t MAKE us do.” Wow.

I hate that only two years ago I published my first book about my daughter and at the time I bragged about how incredible and accommodating her school was. It just goes to show, everything associated with special education is dependent on the political climate, the personnel changes that take place in a school and at the school board, and the whims of the people in charge.

What was really interesting is we have been asking throughout this process, “WHO made this determination?” and the answer has always been, “the IEP team.” Yesterday, I responded to that statement by saying, “I’m on the IEP team, and I DIDN’T decide this.” The director replied that I wasn’t the only person on the IEP team, and that the rest of the team members had decided my daughter no longer needed services.

Bullying, much?

And so, we take their advice and we sue. We meet with an autism-specific attorney on Monday, after meeting with our daughter’s psychiatrist to see what recommendations he has. It might come to nothing, in which case we’re prepared to take our daughter out of school. But I almost feel like we have an obligation to take this further. I am a college educated teacher myself, with a Master’s degree in education. If I can be bullied and run over and lied to about what services are available, what do you think they’re doing to the young couple who didn’t finish high school and lives in a trailer park, but who love and care deeply for their handicapped child? At the risk of sounding like I’m just on a noble crusade, I’ve got the time and the credit score necessary to hire an attorney, so someone has to fight these people and make them do their jobs. I guess that someone is my family.

We Might Actually Have an IEP

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I hope I’m not jinxing myself here, but after last week’s IEP fiasco and this week’s two-hour meeting with the school system’s director of special ed and the superintendent, it is very possible that we might have an IEP that actually makes sense. Carrie supposedly will still have her aide. She will NOT have a box on the floor of the hallway instead of a locker. She will have her assistive technology put back into her IEP. There were even a few recommendations that the director made that we didn’t ask for but that still make great sense.

Now, we have to start the process of rebuilding the bridges that just got burned down and stomped on. A few hours after the meeting with the superintendent, I had to go get my girls from their schools for dentist appointments. While I waited in the office for my older daughter, the principal walked in, saw me, made a frustrated noise, and kept walking. I actually made a pleasant “small talk” comment, only to have the principal turn around, go into her office, and shut the door, all without speaking to me.

This is Carrie’s principal for next year, and I found out that evening that yes, the director of special ed had already talked to the principal about the outcome of our meeting from that morning. I understand she was probably very frustrated with us at that point. And as my husband told me, the principal doesn’t have to like me. She just has to do her job.

We’ll have to see how the rest of this school year goes and how the beginning of next school year is, but first, we still have the hurdle of the actual IEP meeting. I have to sit down with the same people who tried to justify leaving Carrie out there on her own and find some way to come together about what Carrie needs and how to help her be successful. Of course I’m apprehensive and mistrustful, but those are all obstacles that we can’t expect to be in place, we can only address as they come up.

It’s a Miracle! My Daughter’s #Autism Has Been Cured!

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I haven’t written in a while, and until yesterday, it wasn’t because there were problems or stress, I’ve just been unbelievably busy. But yesterday was Carrie’s IEP meeting, and to say that we are disappointed would be like saying the Titanic took on a little water. Venomously enraged might be more apt.

She’s had a full-time aide by her side for five years. This aide was with her at lunch, PE, field trips, Gifted each week, music class, you name it. Next year? Nothing. Apparently, the teachers at her elementary school are so incredible that they’ve cured her. She no longer needs assistive technology, she no longer needs occupational therapy to learn to hold a pencil or a fork or to work the button on her pants, she no longer needs an aide to help her after she wets her pants, nothing. It’s a miracle, she’s cured.

Carrie will move to the middle school next year where she will change classes, have a locker, change for PE, and walk the hallways with hundreds of students in grades five through eight. Yes, my ten-year-old will attend school with thirteen- and fourteen-year-olds. And her IEP team decided to cut out the aide without telling us, as well as cut out OT and reduce her speech therapy by a third. While the school system still refuses to tell us who made the actual determination that Carrie no longer needs these services, one thing is for certain: they’ve got a fight on their hands.

Step one, we contacted several due process attorneys. Carrie’s rights were violated several times this school year, and in addition to taking action on next year’s changes, we’ll be forced to go after the school for this year’s violations.

Step two, we are to file an OCR Complaint. That’s a complaint through the Office of Civil Rights, since disability is covered under civil rights legislation.

Step three, we’re still reaching out to the school and giving them ample opportunity to make this right. No, they don’t have a counterfeit money operation in the basement, but lack of funding does not mean my child no longer has these needs.

In the meantime, we’re preparing ourselves for a future that involves requesting IEP meetings on a weekly basis. There is no such thing as not being allowed to meet with her team, and we’ll meet with them as often as it takes to make sure her needs are met by the people who are supposed to care if she receives an education.

 

Boycotting #Autism Awareness Month?

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Yup. I’m gonna get hate mail on this one. Remember the rule: you’re free to disagree and I even want to hear your thoughts, but keep them respectful. I don’t come over to your blog and call you names.

You read that right. We don’t “celebrate” Autism Awareness Month in my house. First of all, our autistic family member does not appreciate it when we talk to people about her or about her autism. She does know I’ve written two books and she knows I write this blog, and I’ve patiently explained to her that I do it so that parents of other kids like her can read about the great things Carrie can do. I don’t know how much of that explanation worked for her, but I do ask her if I can write about things on my website; usually she says yes because that’s the word she usually says when we ask a question (regardless of what the question was), but there have been a couple of times that she’s said no. Pretty straightforward for a barely-verbal autistic child, if you ask me.

Second, my older daughter summed it up by mistake one day: a well-meaning teacher asked her two weeks ago if she planned to DYE HER HAIR in rainbow colors like the puzzle piece ribbon for Autism Awareness Month. Read that again. DYE HER HAIR IN RAINBOW COLORS. She looked kind of shocked, and said no. The teacher pressed on, and asked her WHY NOT. Unfortunately, the snark didn’t fall too far from the tree, because my daughter said, “I don’t need to. I’m pretty much aware of autism on a daily basis.” She wasn’t complaining about her sister, in fact, it was the opposite. We celebrate autism and all of the great things it can do every day of the year. But thanks, Rest of Society, for joining us in April.

Finally, and this is probably the hate mail part: do you go around with a bumper sticker listing all of your children’s impairments, delays, and setbacks? Do you wear giant T-shirts advertising the your child has Irritable Bowel Syndrome? Do you light up the front of your house to show the world that your child struggles with a learning disability in reading? My older child wears braces on her teeth to correct a really horrible snaggle-toothed look… do we have Orthodontia Awareness Month on the calendar?

Okay, I went a little stupid there at the end. But my point is, I don’t have my child’s permission to shout her condition from the rooftops. I live in fear that I’m doing something that is actually breaking her little heart with embarrassment, only she’s not capable of telling me or expressing her hurt. I don’t have a puzzle piece magnet on my car and I don’t wear autism T-shirts because I DON’T HAVE HER PERMISSION TO TELL EVERYONE THAT SHE HAS AUTISM. (Sounds kind of weird coming from the lady who’s blogging about it RIGHT NOW, doesn’t it?)

If you don’t know already, Lorca Damon is a pen name. No one in my daughter’s day-to-day interactions knows that I write about her struggles with potty training or that we’ve had a few battles over the sensory hell of wearing a bra. And I wouldn’t tell those people without my daughter’s permission, something that her lack of social skills and verbal ability can’t give me. I only write about these things because other parents need to know what has worked and hasn’t worked for us, especially parents of girls, since there just isn’t all that much info out there on their unique issues. But I don’t write about these things under my or my daughter’s real names.

I do hate the feeling that so many parents before me had to struggle so hard to gain acceptance and education for their autistic children. I will be forever grateful in my heart for the work those parents and children did. But for now, we’re turning off the blue light bulb and just letting our daughter be a person, instead of an autistic person.