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Lorca Damonhttp://lorcadamon.wordpress.com

“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.

#Autism and the Staycation

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Yes, it’s been a while since I posted. No, nothing’s wrong. In fact, it was just the opposite. We were on Spring Break all last week, that blessed hope-filled and glorious time of doing absolutely nothing.

There were many years that Spring Break was such a disruption to Carrie’s routine that I had to jam-pack it full of activities so that she didn’t have time to be confused by the sudden and inexplicable change in her daily routine. Now that she’s older and she’s feeling the effects of a busy school schedule just as much as I am, Carrie’s come to see the week off as a great time to decompress and just do… nothing.

We still had lunch at a fast food place a couple of times, and her grandparents came for a visit and took the girls to a movie, but for the most part, we sat around the house in our pajamas. We did our best to adhere to standard conventions of personal hygiene, as in the teeth got brushed twice a day but the bath might have fallen off the wagon a couple of times.

And it was awesome. We watched way too much TV and ate barbecue potato chips for breakfast one day. I will not discuss how much soda was consumed, because you’re not the boss of me.

All in all, the complete lack of structure and nutrition is a wonderful thing because there was a time only a few years ago where Carrie couldn’t have done it. No, it’s not a victory on a large scale that my child has finally learned to throw caution and good ideas to the wind and eat marshmallows for lunch, but once upon a time, Carrie COULDN’T have eaten marshmallows for lunch or lounged around in her pajamas all day. Her daily routine was so strict and unyielding that she couldn’t have seen the fun in everyone sleeping on the floor of the living room while watching old movies.

So even though we were officially out of school for a week, Carrie actually did learn a lot… about herself. She learned to enjoy some of the behaviors that others take for granted and she learned to relax a little bit. And she learned that yellow peeps aren’t just for dessert anymore!

#Autism: Breaking Old Habits

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From the very early days of Carrie’s diagnosis, I knew that letting her have a rigid, strict routine could be the kiss of death. Face it, we all love our morning routines, and it ruins our days when something messes them up. BUT it’s going to happen from time to time. We deal with it and we move on. That’s a little harder for someone with autism, especially if that person has held to a strict routine for his entire lifetime.

So when the opportunity to mess with Carrie’s routine presents itself in a fun, non-threatening way, we go for it. We now have a child who is fairly resilient, who loves to eat in new restaurants (even if there are still whole categories of foods that are off limits…looking at you, fruit food group), who loves to travel to new places, and will even pop up and surprise me once in a while, like the summer she insisted on riding the 14-story Freefall ride at the amusement park!

Sometimes, though, it takes a little coaxing to get the new experience to be as fun for Carrie as it is for the rest of us. EXAMPLE: the restaurant where you throw your peanut shells on the floor. Not only was she very agitated by all of the other patrons just callously throwing food down, she kept trying to wipe the shells and skins from our peanuts off the table with a napkin. It took a bit of convincing to get her to even drop a shell, let alone gleefully throw them down like any other kid.

I know what you’re thinking. You’re thinking, “Seriously??? Get a life. Throwing peanut shells is not a crucial life skill.”

And you’re wrong. It is absolutely a life skill. It demonstrates an ability to go with the flow, an ability to see a situation and not do what is expected. Today it’s throwing peanuts in a cattle-themed restaurant, tomorrow it’s removing your shoes as part of a delegation you were selected for from your school to visit the Japanese consulate’s house. If she can’t throw the peanuts, she can’t take off the shoes; even worse, if she’s so rigidly stuck in mode that she can’t throw the peanuts, she will never even be considered for the delegation from her school. And I’m not willing to accept that.

Teaching this level of resilience is important to giving her options down the road. Today it’s a funny mess-making activity, but the new experience she faces tomorrow could have a real impact on her future.

This video of Carrie only has music because the restaurant was so loud that we had to shout over the noise, and no one wants to hear that!

#Autism: There’s Not Enough Dye to Cover These Grays

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As Carrie matures, we get to delight in some of the new things she can do. She is almost to the point of actually having a brief conversation, where she will say something and you respond, and then she might actually say something else to answer you. It’s amazing.

But one thing that has been difficult as she matures is her upcoming response to puberty and teenager-hood. While she’s growing physically in a very healthy way, emotionally, she’s taken a downturn which shows all the signs of just being plain old fashioned moodiness. She’s sullen, she often gives one-word answers to your questions, and she likes to be in her room with the iPad, basically being left alone.

Allowing her to withdraw like that is killing me. On the one hand, as a preteen, this is completely typical behavior and I do want to show her some respect for her needs. On the other hand, I’ve just spent the last eleven years fighting to keep her from withdrawing and shutting us out. It goes against everything I know about her to let her sit in her room and listen to music or to let her walk away without speaking.

I’ve always known that there are autistic behaviors and there are normal childhood behaviors, and that sometimes the boundary between the two is a little fuzzy. I was furious with my mother the day she looked at my screaming toddler and said, “You know, you can be autistic and still be a brat.” Of course, my mom only meant that to say that sometimes Carrie will have a meltdown that is beyond the scope of her control, while other times she’s going to have a good old hissy fit over something, just like any child is capable of.

While suffering through the arrival of teenagerhood for any of your children can be enough to make you instantly gray-haired, I’m going to wallow in self-pity and make the claim that it might be even harder on parents of autistic kids. We want to do what is right for them so they emerge as confident, self-assured teens, but we still want to hand-hold and make sure that these trials they seem to be enduring aren’t just another facet of autism that we could be helping them overcome.

#Autism Gives Back

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When life with a special needs child gets a little overwhelming, it’s very easy to fall into a cycle of “Why me?” syndrome. You start to look around and be jealous of the people around you, which you know on the surface is stupid since everyone has struggles they face, but it’s almost like those few minutes of wallowing in self-pity are alluring. It’s sometimes a very real physical effort to stand up taller, kick off those pity-party feelings, and face the next challenge head on.

One of the best coping skills I’ve found over the years, even before having a child with autism, is focusing on the needs of others. I know this is going to sound incredibly shallow, as if I use the misfortunes of others to make myself feel better, by try to stick with me through this blog post. No, I use the needs of others to help me focus on the great things going on in my life.

If I find myself in one of those downward spirals where I’m just looking for everything to go wrong, one of the best ways to pull myself out of that negativity is to focus on other people’s needs. It might be going on a mini grocery shopping spree to take some food to the local Food Bank or going through all the closets in the house in order to gather up those clothes that someone out there could be wearing. My girls and I have pulled a couple of cake mixes out of the pantry and made some desserts to drop off at the local soup kitchen, or even just to take to the firemen and paramedics who are working the night shift on a holiday.

Actively looking for ways to help other people helps me to center myself and look at all the good that is happening in my life. This coping mechanism has been very healthy for me, and it’s a concept I try to pass down to my kids, especially Carrie.

There is so much that Carrie can offer the world in terms of giving to others and recognizing their needs. She has donated her hair to cancer-wig programs three times, an act that is all the more sacrificial because she doesn’t like change and she really hates getting her hair cut. She has stood outside on cold school mornings with her classmates to collect coins for her schools Relay For Life team. She has run several 5K races for charity, and we’ve had many talks about the people who are going to benefit because she ran.

It’s so easy some days to slip into a little bit of despair and think that we’re the ones who should be looked after and cared for, just because autism decided to take a seat at our table. The reality, though, is that our lives are richer for it because we can see the struggles that other people face and know that there is something we can do to help, even if Carrie has to find her own way to give back.

The Lengths We Go To…

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What’s the craziest thing you’ve done for your kids? I thought planning a family vacation to Washington, D.C. because my daughter wanted to see the bugs in the Smithsonian was pretty over the top, right up until last month when I started my own business because of my daughter, Carrie. Let me back up.

I’m a teacher. Carrie is a student. I work in the jail, so it’s actually a really good thing that Carrie doesn’t go to my school. This school year, though, has had us all reeling from the effort of trying to help Carrie be successful in school in an environment in which it just doesn’t seem like her school is as interested in her success.

For the first time since Carrie started school, I had to consider the very real possibility that she will not graduate from high school. If the next few years are as aggravating as this one, I will end up having to home school her.

The really bad part is that no one is going to pay me to teach my classes from my living room. Believe me, I’ve tried. So if Carrie has to quit school, guess what? So do I.

After I had stopped being quite so angry at her school, I did realize that this day is coming no matter what. There will be a day within the next eight years when Carrie does not get shipped off to school every morning. I started to feel this desperate need to be ready to do something different but that would still provide an income. I started my own business (hence the long absence from this blog) in the hopes that I will be able to work from home and that Carrie can actually work for me.

I’ve written several times about preparing for the future, and while we can’t prepare for every possible scenario or outcome, we can do a lot to be a little less surprised by what’s coming.