Monthly Archives: August 2013

My Ten Day Letter, Parent Input, and Formal Request

Here is a copy of my letter minus the personal information. This one may have some spacing issues or may not flow as nicely without the personal info in it– something to do with copying and pasting from word to wordpress gave me issues with spacing. The original was flawless, lol– at least in terms of spacing, haha.

 

August 28,2013

 

 

Dear,

 

This letter is to serve as a parent input statement, a ten day notice, and formal request, and is regarding my son, Liam and the special education services he has received while enrolled in _______________. As you know, my son, Liam, has been medically diagnosed with Autism Spectrum Disorders. He has also received a school diagnosis of a high probability of Autism Spectrum Disorders.

 

After our meetings and correspondence, it has come to my attention that _________________is unable or has failed to provide Liam with FAPE. In order for Liam to receive FAPE, it is imperative that he have one on one intensive instruction provided by the same teacher/therapist daily for a minimum of 25 hours per week with intensive behavioral instruction/therapy. This instruction should happen in a calm, quiet, environment with the least amount of distractions. It is important that the one on one be provided by the same teacher to maintain consistency. I have offered solutions to help the school offer the services Liam requires to provide him FAPE. I have done this both in email and verbally. I have made every attempt to participate in Liam’s IEP process. I was present at the table, have sent emails, had formal and informal meetings, and my participation has not made a significant, meaningful impact on the development of Liam’s IEP.

 

The district’s evaluations and personnel have agreed that Liam needs one on one instruction in a calm, quiet environment. The district has also agreed that Liam’s behaviors impede his progress, and intensive behavioral interventions are necessary to help Liam achieve academic success. Per our emails and meetings, the team agreed that Liam has severe behavioral issues that affect his ability to learn in the classroom. In the meeting that occurred, August 21, 2013, ___________agreed that Liam did have an intellectual ability to learn, and should not be underestimated, which supports _______________behavioral assessments from Hopewell.

 

The district’s ETR’s:

 

The IEP is in contradiction of the district ETR’s and recommendations made by the district personnel who have worked with Liam multiple years. ETR’s and progress reports that Liam’s preschool teacher and his preschool speech therapist provided during his May 15, 2013 IEP/ETR meeting both recommended one on one instruction in a calm, quiet environment with minimal distractions. This is an accurate recommendation. Not only did a teacher and speech therapist that both spent two years working with Liam make the recommendations, but his private speech therapist, and both of his developmental pediatricians made the same recommendation– that Liam needs intensive one on one instruction. The district did not consider any of these recommendations when writing and implementing Liam’s current IEP.

 

Individualized Education Plan:

 

An individualized education plan should be very specific. It should state who, when, how, what. It should have measurable goals and data to support it. The problems with the districts IEP and interventions:

 

  1. Liam’s IEP is vague, and does not provide detailed or specific information about the services required to provide Liam with FAPE. (He needs have one on one intensive instruction provided by the same teacher/therapist daily for a      minimum of 25 hours per week with intensive behavioral      instruction/therapy).

 

  1. The district failed to address the classroom placement.
    1. According to the current IEP, Liam would be a student in the MH unit at       ________________. It is my understanding that this classroom will have at       the minimum of 4 children with multiple handicaps, low cognitive       functioning, and multiple special education needs, and that the class size could increase up to 9. This is not intensive one on one instruction. It does not matter if the people in the room are adults or children—too many people in his space make Liam overstimulated which impedes his ability to participate and learn. For example, during the 2012-2013 school year, there were periods of time when the preschool classroom size at _______________dropped to around 8 or 9 children. Liam did not show significant gains during this period, despite smaller class size, a certified special education teacher, and two/three aids in the room. I was told several times by preschool staff that Liam was only able to accomplish task when they worked with him one on one. 
    2. The current placement fails to provide FAPE because Liam needs one on one intensive instruction with the same teacher daily for a minimum of 25       hours per week. The classroom the school is offering does not meet this       need.

 

  1. The district did not put this in writing, but verbally offered to have staff—the teacher of MH 1 and an aid trained by employees of the school district in ABA      strategies. The district only has to implement and comply with what is written in Liam’s IEP. Verbal agreements are not part of his IEP. The behavioral interventions offered are not intensive or adequate.
    1.  “ABA strategies” is a loose term, and does not give specific explanation or       provide the intensive, detailed academic program Liam requires.
    2. The  district did not specify credentials of the trainer or when the training       would happen in the IEP. Currently, as of August 28, 2013, there are no       scheduled trainings, and per Liam’s teacher, _______, no one has discussed ABA with her.
    3. The current IEP does not include ABA provided by a certified professional in a one on one, calm, quiet environment with the least amount of distractions.
    4. The district suggested Liam’s ABA would happen in the current classroom. Once again, this is not a calm, quiet, environment with the least amount of distractions, which would impede Liam’s progress with behavioral interventions and his core instruction.

 

  1. The district agreed to provide Liam with a one on one aid at the May 15, 2013      IEP Meeting.
    1. It  is August 28, 2013, the second week of school, and an aid has not yet       been hired or trained to work with Liam, despite having over three months      to do this.

 

When evaluating his progress report for preschool year 2011-2012 and 2012-2013, it came to my attention that Liam lost skills in some areas from the 2011-2012 school year and the 2012-2013 school year, which would suggest that he requires Extended School Year services or year round education. I have asked about ESY for Liam since the 2011-2012 school year. I was told he did not qualify at that time, and when I asked this year (2013-2014) I was told we would discuss it in the spring.

 

Liam has made no significant gains using the facility and teaching methods supported by ____________________. That is not a reflection on previous teachers or staff. I believe __________ to be highly competent, and that she takes a genuine interest and care for her students. Having said that, I do not believe the lack of progress is due to Liam’s intelligence or ability to learn. The environment was and continues to be too over stimulating for Liam– the class size was, and continues to be too large, and Liam did not get intensive one on one instruction, despite all of the recommendations from the district supporting one on one instruction. 

 

In addition, I have shared my concerns, my opinions, and the information given to us by our specialists and (Cincinnati Children’s Medical Center) which supports Liam receiving one on one intensive ABA in a calm, quiet environment with the least amount of distractions for a minimum of 25 hours per week. Evaluations from Children have also revealed Liam has the intellectual ability to learn the same information as his five year old peers. Even though the school does not have to give merit to these evaluations and recommendations, as his mother, I am giving merit, not only to district information, but to all information given to us by Liam’s providers.

 

As you know, I am a special education teacher myself, and am pleased to report that Liam has made excellent progress at home this summer because of the intensive one on one instruction I provided him. One of the major gains is Liam is now potty trained. It was through the use of Applied Behavioral Analysis, one on one intensive behavioral instruction, detailed picture schedules, now and then boards, picture exchange communication that Liam was able to make this wonderful achievement. It is my concern that Liam will not continue to make gains if these interventions are not continued during the school year, and if Liam is not placed in an appropriate learning environment. FAPE is a free and appropriate public education provided to all students. Liam will not receive FAPE or LRE (least restrictive environment) if the current, suggested, IEP is put into place.

 

The first seven years of life are a critical, developmental time for children, particularly children with Autism. Research suggests that early, intensive interventions are necessary to help individuals with Autism reach their potential. This does not only impact their life at school, but has far reaching implications to the success of the child’s future all the way into adulthood. Applied Behavioral Analysis is the only FDA approved behavioral therapy for those with autism. It is the recommended behavioral intervention because Liam has responded to it. Receiving these services now is crucial for Liam to succeed. Liam is currently five, and still in a critical developmental stage of childhood. These interventions are going to be more effective now while he’s still rapidly developing than to wait until he’s older.

 

If ____________can not provide Liam with intensive one on one instruction that has been recommended on the ETR’s, if they are not considering the behavioral assessments from __________, or the recommendations of Liam’s doctors, it is my intent to enroll Liam in a private school that is capable of meeting his needs, and providing FAPE. ___________________is the closest school to our residence that offers:

 

  1. A behavioral and academic program specific to each individual child’s needs.
  2. Specific, detailed IEP with measurable goals, and supporting data for interventions.
  3. One on one intensive instruction in a calm, quiet environment with the least amount of distractions for as many hours per week as each child requires.
  4. Applied Behavioral Analysis, which Liam has responded wonderfully to over the course of the 2013 summer vacation, and that has been recommended by multiple providers.
  5. Year round schooling—also known as ESY.
  6. Occupational Therapy
  7. Speech Therapy
  8. Physical Therapy
  9. Music Therapy

 

___________________is capable of providing Liam with FAPE and LRE. _____________School District is either unable or has failed to provide FAPE and LRE. I will be expecting ____________ School District to pay for these services, and provide transportation to:

 

 

As you know, I did not sign the proposed IEP because I do not agree with it. It is my request that you attach this letter to Liam’s proposed, current IEP. I am doing the same with the copy I have at home. As I have always been an active participant in the IEP process, school functions, and Liam’s education, I will continue to do so. I am available for a meeting to discuss this matter, and will make Liam available for any further evaluations he may require.

 

Best Regards,

Rebecca Perin

 

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Random thoughts of Liam’s Mom

 

I used to watch him as he slept. I would think of all the things– the things we’ve been through, where we’ve been, where are we going? I would fight the urge to scoop him up in my arms, and scream I’m so sorry! I am sorry I didn’t protect you. I am sorry I was naïve. I am sorry I didn’t know what I know now. I am sorry I wasn’t a better mother. I wouldn’t scoop him up, but I would gently lay my head on his chest to feel the beat of his heart. I would cry softly, and make promises to learn more, to try to understand better, to be the mother he needed. I would promise him I would do everything I could to make it better.

It took me a long time to change that late night ritual– to change the dialogue in my head. It’s not easy. It takes time. I would like to say those thoughts are completely gone, that I don’t have moments I still feel like a failure. I wish I could say, I don’t still, every now and then, feel sad and responsible. I can’t. What I can say is those times are fewer and farther between. I recognized destroying myself with grief would not help my son. I realized I had to make good on the promises.

I try. It’s not easy making life decisions for another person– the decisions I make for him now could effect his quality of life for the rest of his life. It’s serious stuff. And, it seems like those decisions are around every turn. It really makes me appreciate the simple moments, the sweet moments. But, the pondering, wondering, researching, worrying, talking, hoping is always there, in the backdrop, reminding me there are big responsibilities ahead of me.

Nowadays…

There’s something that comes over me, I can’t put it into words. It happens at the strangest times. This swirl of unbridled emotions, and there’s nowhere for them to go– but out. I will be folding his laundry– a favorite shirt, a stuffed animal that needed a wash– and before I know it my face is buried in the shirt or the rabbit, and I’m crying. I cry because I need too– because in that moment, there’s nothing else I can do. I cry because I am grateful for our time together, for the path we have walked, for the journey we are on. There’s something so intimate in watching another person become who they’re going to be– there aren’t words to do it justice. I cry because he’s getting bigger! He’s not my baby anymore:-) I cry because the summer is almost over, and we won’t ever have this time again.

Then I dry it all up, and realize I’m being ridiculous. Kids grow up– that’s the idea. I have a good laugh at myself for being so sentimental– then put the kid’s dinosaur shirt away.

 

 

My Letter to Scott Sloan and Jennifer– People with autism are not “retards.”

 

 

 

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The day before I wrote this, I was listening to a radio program that was discussing some changes that were happening at King’s Island, an amusement park, here in Cincinnati. A caller, a woman named Jennifer, called people with autism “retarded.” I wrote this hoping someone would read it. I never imagined Scott Sloan would on the air.

From: Rebecca Date: June 13, 2013, 5:10:28 PM  EDT To: “sloanie@700wlw.com” < sloanie@700wlw.com> Subject: Listener Email from  http://www.700wlw.com

Hello,
Honestly, this morning was the first time I have ever listened  to your show. My husband listens daily, and he text to say, “Hey Babe, turn the  radio on 700 AM. The topic is about autism. I am on hold to comment.” So I  turned it on. I tuned in to hear Jennifer.
Before I comment on Jennifer,  here’s a little background. I am mommy to Liam, a five year old, little boy. He  has blue eyes, blonde hair, and is completely adorable. Looking at my son, you  would not know he has a disability. This is true for many children on the  spectrum. However, Liam has moderate functioning autism, expressive receptive  language disorder, and encephalopathy. Liam is also a 90 pound, almost 4 foot  tall, five year old. He’s a really big kiddo. He is not overweight because of  his diet. Aside from autism, Liam has hypothyroidism. He was 8 pounds 12 ounces  at birth, 22 pounds at 6 weeks, 45 pounds by 1. He was breastfed most of this  time. He has metabolic issues that prevent him from processing calories  correctly. People see him, and assume he eats junk food all day. He is on a  gluten free/casein free/soy free/ Specific Carbohydrate Diet. He can’t have  sugar, fast food, processed foods. He eats better than most children.
Originally, I was on hold to tell you about our King’s Island adventure two  years ago. We were participating in the JDRF walk for the cure. We have another  son who has juvenile diabetes, and wears an insulin pump. Liam was newly  diagnosed–just a couple of weeks. I was in overdrive learning about autism,  implementing his new diet, processing everything that was happening to our  family. Truly, I was heartbroken. My beautiful baby, my son– I felt like he had  been stolen from me. There’s no other way to say it, but I was devastated.  Anyway, in my head I assumed, we will go, we’ll wait like everyone else, someone  will get sunburned, someone may get a scrape, we’ll play hard, the kids will  fall asleep on the way home, and wake up tomorrow begging to go back.  Boy,…
A day at King’s Island for a special needs family,…
Traveling with our children is never easy. Dietary restrictions limit eating away from home, which means we have to pack every snack and meal before  we leave the house. We have diaper bags, diabetes kits with emergency supplies,  extra changes of clothes just in case, medicines, our go to tricks to get the  medicines down, special needs stroller, and all the other typical family stuff.  We look like we’re going on a camp out everywhere we go. A few years into it, it  doesn’t bother me. It has become our normal, but back then, it was all new.  Honestly, I was self-conscious. When you are put into difficult situations,  you’re forced to evaluate yourself. What matters? What doesn’t? How shallow are  you? What needs to change within yourself to make a situation work?  So  back to our day, we participate in the walk, and enter the park.  We make  our way to the little kids part, and immediately my little guy’s interest is  sparked when he spots the train. Of course, the older two kids had their own  plans, and the train was not part of it. So my husband took the older two, and  Liam and I stayed behind to chug along. Are line passes important for special  needs families? You can decide. Luckily, there was no line when we stepped up to  board the kiddy train. He loved the train. He completely relaxed, and enjoyed  the trees and scenery. I used to be able to tell you, exactly to the second, how  long that train ride was, that info has left me, but it was around two minutes.  We rode the train 38 times. Every two minutes, my son would have a complete  meltdown. He would scream and cry. He would fight me and the worker. In a  hundred degree weather, I’m wrestling a 55 pound, three year old (at that time)  every two minutes, 38 times in a row. Well,…it wasn’t exactly every two  minutes. A line had begun to form. So after every ride, we would go to the end  of the line, where my son would scream to the top of his lungs, gouge my eyes,  pull my hair out in patches, scratch my face until we were back on the train.   Is he a horrible, mean tyrant? No. No, he’s not. Expressive receptive  language disorder means a person does not understand what your are saying, and  they can not verbally communicate their needs. When your only means to  communicate anger and frustration is through action, how do you do it? Remember,  you are three. I will tell you how, you beat the crap out of something or  someone until they release you. The whispers and stares were so crushing.  Remember, a few weeks prior to this, my son only had a speech delay, and in my  mind, I was very much like the parents who were staring at me. After what felt  like an emotional eternity for me, I can only imagine how confused and upset my  kiddo was, Liam spotted a mini, race car ride. On the train, I had been able to  ride with him. On this ride, I could not. I tried to explain to the operator, my  son has autism, and he may have to stop the ride if Liam could not tolerate it.  It’s not like a typical, scared child, who is able to calm, self-sooth, and move  on fairly quickly. Three or four minutes of over-stimulation may take hours and  hours for my son to get over. On top of that, he would be so traumatized, he  would never attempt another ride like that again, ever. Example, a lap dog  snapped at him when he was 18 months old. He has an alarming anxiety and fear of  dogs to this day.  As the ride started, I could tell he was going to lose  it. Sure enough, he started wailing, reaching for me, and trying to find an  escape. I quickly asked the operator to stop the ride. He told me he couldn’t,  and crying wouldn’t hurt Liam. Well, obviously this person knew nothing about  mama bears and their cubs. He probably still remembers me– the mom who ripped  him a new asshole, and climbed over the railing to get my kid. Needless to say,  he stopped the ride. My child was shaking uncontrollably. After quite awhile of  hugs and deep pressure, he saw a water maze. He loves water. So, off we go. This  water maze, my word, what to say? He’s autistic, every bead of water was  amazing. Of course he’s not going to run strait through like a typical child. He  was fascinated. So he’s running back and forth, going in the exit, he won’t go  all the way through. I’m chasing him back and forth, trying to get him because  this operator, another gem, is continually telling me my child is breaking the  rules. Apparently, standing inside the maze, up against a mesh wall, watching  water spray (no one else in the maze) is a big rule breaker. (Laughing) So I  wrestle Liam into my arms, and get my butt whipped again, while getting drenched  to my underwear. By this point, I was ready to have a meltdown of my own. Was it  always going to be this way? Would we never be able to do “normal” stuff? The  day was really a blur. I think I cried the whole way home. The kids slept, but  that was the one and only time we have been to King’s Island. Fast forward to  present day, and I think it is absolutely something we would try again, but we  can’t afford it. Liam has come so far, developmentally, due to great therapist  and biomedical interventions. However, those treatments cost thousands of  dollars, and leave little money for things like passes to King’s Island or  family vacations. Don’t feel sorry for us (smiling), my non verbal son is now  verbal, just one of the many gains he has made. So to this mornings topic,  King’s Island should simply require medical documentation to purchase a pass to  skip line. Kids who have this pass shouldn’t have to come back in an hour. They  should be able to ride, and move on. Should we teach our kids patience? If  possible, of course we should! Trust me, turn-taking, patience, waiting, manners  are all on our skills agenda. It’s not just lines that they have trouble with,  it is every need or want. My son does not relent until he gets what he wants or  needs–or I come up with a damn good substitute. We work on these skills in  various therapies. King’s Island is not the place to teach these skills to  autistic children.
Now to Jennifer…
Dear Jennifer,
As  I listened to you talk, I was giving you a lot of understanding, patience, and  compassion. After all, it was clear you were ignorant to the world of autism.  Most people are unless it effects their life in some way. Mother to mother, if  you weren’t able to communicate verbally with your children, how would you feel?  Some parents never know what their child is feeling, thinking, when they’re  hurt, in pain, sad, happy. The simple act of giving a hug is too much for their  children. We don’t sleep because our children only need an hour or two. When we  do sleep, there’s an overwhelming sense of anxiety and fear. Example, this  morning, in my sleep, my mother’s intuition started talking. Wake up! Get up! I  woke up to see my front door wide open, and my five year old was gone. You can’t  imagine the fear, desperation, helplessness that overwhelms you. Ever lost one  of your kiddos in the store for a minute? Remember how upset you were? Imagine  if that child couldn’t speak, yell for help, or recognize danger. But, the same  child can figure out how to unlock every lock you put on your doors, no matter  how high up you install the locks. Luckily, my son is gifted with an amazing  memory, and as I was running around, barefoot in my pajamas, he came climbing up  the very short, hiking trail behind our house. This morning could have ended a  lot differently. Autistic children die all the time from wandering. Needless to  say, we’re adding yet another lock. How excited were you when your children  potty trained? Yay! No more diapers, right? Wrong. My son is in diapers at five.  I have changed more diapers than a typical mom could even imagine.
Imagine restraining your child every single time you took him to an appointment  where he had to be examined. Imagine hearing him scream, “Mommy help me! I’m a  good boy! Somebody do something.” As hard as you try, you can’t help him  understand why this is happening. While you’re trying to explain to your kids  why special needs kids get to pass them in line, I’m trying to teach my son to  point, look in my eyes, say mommy. Thank God we’ve moved passed this, but we  used to have to restrain my son twice a day to brush his teeth. At one point,  every transition was a meltdown or tantrum. Do you know what a transition is?  It’s moving from one activity to the next. Do you know how many times per day  people change activities? That’s how many meltdowns my son used to experience.  Autistic children’s ability to process their senses and understand the world  around them is often very limited. A mother’s touch could feel like fire, the  buzzing of a dishwasher may send them over the edge because it hurts their ears,  large crowds can cause anxiety. Smelling your perfume could give my son an  instant headache, and make him barf on the back of your legs while we’re  standing in line behind you.
You should count your blessings that your  children are healthy, that going to an amusement park is something your family  enjoys so much, you buy season passes. You should consider the parents watching  their children die, or the parents who worry that they have to live forever so  they can take care of their children. Who else is going to show them love and  compassion? Certainly not a person like you. Google compassion and thankfulness,  you may benefit from a crash course.
As the mother of an autistic child  and a special education teacher, as I listened to you talk, I was reminded how  important autism awareness is for the general public. I didn’t really judge you,  up to the point you called my son and his peers retarded. He is not retarded. In  fact, he is gifted. At that point, the mama bear came out in me, and honestly I  willed horrible things to happen to you. Mainly, because you became a pest  control problem at that point. Set a trap, let her chew off her own leg, maybe  she will hit a main. But, it quickly dawned on me, your attitude toward others  will seal your own fate. There was no reason to wish bad things on you.
I feel so grateful, thankful, and blessed that my beautiful, amazing, smart,  often challenging, little man was given to me, and not one of the Jennifers of  the world.
Sincerely,
Liam’s mommy, Rebecca,
P.S.  In the event our family does make it to King’s Island this year, I hope we see  you there. I will be the one with the “obese retard” passing you and your  children in line, waving. 😉
To the host my husband calls “Sloanie,”  (I’m guessing this is an affectionate mannism, laughing), thank you. Thank you  for covering this topic, for going to bat for these kids, and for reading this  rant.
You are awesome,
Rebecca