Monthly Archives: February 2012

She Turned 22 Yesterday

February 20, 2012 By in Uncategorized Tags: , , , , 2 Comments

I watched a mother stand by her daughter,

Not budging,

Not an inch.

For the cord once cut,

She wistfully, wantingly, reattached.

Needing the nearness of,

Her child who turned 22 yesterday.

…

I watched a mother touch her daughter’s hair,

Straightening it as if disheveled,

Even though it wasn’t.

Ebony hair, like her own, perfectly in place.

Needingly, lovingly,

She reached out to,

Her child who turned 22 yesterday.

…

I watched a mother’s eyes light up,

As she spoke of her child,

“So beautiful.” She said.

Cradling herself in the comfort of her words.

Occasionally looking towards whom she spoke,

Gazing more though on,

Her child who turned 22 yesterday.

…

I watched a mother clutch her daughter’s baby blanket,

As if her life depended on it.

And I think it did.

Soon the blanket will be what is left to hold,

When the afternoon is over and the lid is closed.

For the mother was standing beside the open casket of,

Her child who turned 22 yesterday.

…

I watched a mother at her daughter’s wake,

At the end of a week no one should have.

A brain tumor discovered on Thursday.

In a coma on Sunday.

And gone by Monday.

Now grieving on Saturday,

Her child who turned 22 yesterday.

…

And as I watched a mother on the eve of burying her child,

I thought of the worries we keep as company,

And sit down with to tea.

Worry is a dreadful companion,

It takes our time yet leaves us nothing worth standing by, reaching for, speaking of and holding to.

I was reminded of this while watching a mother beside,

Her child who turned 22 yesterday.

To That Parent I Met When My Kid Hit Your Kid

February 16, 2012 By in A Mom's Story Tags: , , , , , , 9 Comments

I might have met you once.

We might have met when my kid hit your kid.

Yeah, my kid hit.

My kid was an equal opportunity hitter.

He hit boys.

And he hit girls.

He hit kids of every color.

Sometimes he hit kids at school.

Sometimes he hit kids at the park.

And whether or not I was there, his hitting did not go unnoticed by me.

For each time he hit, a little part of my heart broke.

When I was there, when I saw the upset child and parent, I couldn’t blame them for their reaction.

If you were that parent, at the moment we met, I expected you to hate my child and through association, hate me too.

For despite what might have happened to lead up to my kid hitting (in the autism world this is called an antecedent) it didn’t matter, because the stone cold fact is my kid crossed the unacceptable line.

And when we met, I might not have apologized. That may not have been nice, but it wasn’t because I didn’t care about what happened.

Just the opposite.

I cared so damn much and I wanted the hitting to stop more than I wanted the sun to rise every morning.

But I had to write you off.

Yeah.

I didn’t want to salvage the situation. Honestly, I didn’t even want to try.

The immediate situation couldn’t be undone, but maybe, I could prevent the same situation from happening in the future.

Let me share with you my darkest and most solemn secret.

I lived with the almost constant thought that if I didn’t help my kid stop hitting, one day, instead of meeting you at the park, I would meet you at my son’s arraignment.

And I didn’t know how to explain that to you at the park.

And when my son was upset, I knew if we engaged, even to apologize, it could make the situation worse because he was already out of his mind. So we left as quickly as we could. It just seemed better that way, better for everybody.

I hoped you would tell your kid that hitting is wrong, because you were right to do that. I hoped you told your kid that violence does not solve problems.

Please know that’s what we told our son and that the necessary discipline took place. And the energy I didn’t use at the park, I used to practice, ad nauseam, correct responses to provocation and other interactions. Over and over we taught “Ignore and walk away.” We read books, and we went to counseling. He took medication.

And eventually, eventually, he hit less, and when he did hit, he was able to calm down quicker, sometimes even at the scene, and apologize.

Then he stopped.

My son hasn’t hit another kid since he was eight.

Years later, when he was a senior in high school, he once again stood before other parents. He had just been named a National Merit Semifinalist and as he was being recognized for his achievement, not only was I extremely proud of the intelligent side of my son, in a little part of my mind, I left the reception and revisited the park. I remembered you, apologized and celebrated my son’s tremendous strength of character and how far he has come.

The books I read when he was a toddler…

were replaced by these books when he was three and four.

And finally, once diagnosed, at four, came these books and eventually an end to the behavior.

Kindergarten

February 14, 2012 By in The K-3rd Grade Years Tags: , , , , , 2 Comments

A month before the start of kindergarten our family moved to a new state.

It was the first time I did not want to move.

Moving meant leaving behind a tremendous support system. But what moving meant didn’t matter. We were going and I needed to be prepared. So let’s back up the story a few months, because as every Asperger parent knows, behind a successful transition is lots and lots of prep.

As soon as Neal accepted his new faculty position we visited the city that was to become our home. It was March 1997, 16 months after Teddy’s diagnosis and all I could think of was getting support reestablished. With that objective, the first person we met was the Special Education Director. Typical, I imagined, for parents of special needs kids.

And to that meeting came with me my arsenal of current evaluations from our trusted OT, PT, speech therapist and school psychologist team. I left no room for the new school system to doubt Teddy’s diagnosis or his need for special education support. I had been told that could happen.

Fortunately we met no such resistance, so our time together was spent touring the few schools that had experience working with children with autism. We quickly realized we were moving into a poor school system, poor both in funding and in autism-related educational advances.

This situation made our choice rather easy. We picked the school that not only was serving a boy with autism (his challenges were far different from Ted’s) but which had the first special education teacher we met who knew of Aspergers. In early 1997, Aspergers was still a fairly new diagnosis and so when we she spoke up, Neal and I were like, “Well, at least she’s HEARD of it.”

The next big decision was whether Teddy, who was going to be six, should be in 1st grade or kindergarten. With his birthday just two weeks before the cutoff date he was either going to be the oldest in kindergarten or the youngest in 1st grade. Academically, he was more than ready for 1st grade, but the school encouraged the repeating of kindergarten to help his very delayed social skills.

Personnel drove the final decision. The special education teachers admitted the school’s 1st grade teachers were ill-prepared for a student with Teddy’s needs but they had a kindergarten teacher who had experience with autism. Her background, coupled with her eagerness to work with Teddy, was definitely the deciding factor. Kindergarten with Mrs. Anderson it was.

With the two most important decisions made, the next step was to prepare Teddy for the transition. Once we moved into our new home, almost every day in the month leading up to the start of school, we walked the one block to Davidson Elementary and played on their playground. We hoped the more familiar he was with the facility, the more comfortable he would be once classes began.

Finally, a week before school, Teddy met his teacher and was able to explore the classroom. He touched EVERYTHING. Teddy needed to touch. We also talked about the class schedule and rules. From this discussion, I wrote the Social Story I read to Teddy nightly preceding the start of school. Read Ted’s Social Story here.

Now is the part of the post where I introduce Teddy’s IEP. Good grief, when I reread it, I cringed.

IEP:

  1. Teddy will follow the code of conduct with modifications.
  2. Teddy will transition appropriately
    a. he will ask teacher for assistance
    b. he will ignore and walk away
    c. he will accept responsibility for his actions
    d. he will increase his patients (yes, it was spelled that way) and tolerance for others.
  3.  Teddy will improve his expressive and receptive language skills
  4.  Teddy will self-monitor his volume
  5. Teddy will take turns talking appropriately
  6.  Teddy will use “excuse me” when appropriate

IEP Services:

Participate in regular education kindergarten class and receive up to eight hours a week in the special education resource room.

Additional Non-IEP Activities:

Participated in a twice-a-week after-school general education computer class. More about this in 1st grade post.

Participated once a week in horseback riding therapy. More about this in 3rd grade post.

There was no Pee Wee bowling club so with the cooperation of a local center I began one.  Not only did Teddy participate, he had the highest average in the league. Not bad for a kid who had problems throwing a ball just a few years before.

Participated in the YMCA Indian Guides program. Great program because dads stay with their kids so Teddy’s supervision was not unusual, it was expected.

Conclusions: Teddy handled two huge life transitions, relocating and beginning elementary school as well as any kid could. I was proud of him and how he rolled with the changes.

School success came because Teddy had a teacher who cared and accepted him. Her caring allowed a little boy to be at ease and it is this mother’s belief that because he felt safe and secure, he shined. Moreover, he liked and respected her and thus worked hard and by mid-year was earning awards for academic achievement and citizenship.

And of course there were hiccups, but they weren’t deal breakers. (Those came in first grade.) Teddy pulled hair, was loud, and threw sand. I have a file full of notes that came home during kindergarten reporting the event du jour. But with each event we all learned, because he was allowed to tell his story, which always unearthed the antecedent and demystified his behavior.

For behavior was how Teddy communicated and how he taught us what he needed.

Kindergarten worked because the adults in his life listened, flexed, and made the modifications necessary to help him, help himself, to succeed.

That was Teddy’s kindergarten year.

Next: The Tide Turns In First Grade

 

Teddy’s Kindergarten Social Story

February 14, 2012 By in The K-3rd Grade Years Tags: , , , 9 Comments

I am going to big-school Kindergarten at Davidson Elementary

Davidson is a very big school. My last school was very small.

My new school has Kindergarten through 6th grade.

I will be in Kindergarten.

My teacher is Mrs. Anderson.

I will go to school Monday, Tuesday, Wednesday, Thursday and Friday just like I did at small-school kindergarten.

School starts at 8 so Mom and I will walk to school by 7:50 each morning.

Mom will walk me to my classroom. Mom is not allowed to come in my room so I will say goodbye at the door.

In the morning my class will have reading, writing and math. The other things I will do during the day are playground, music, center time, lunch and PE. PE is when you go outside and Coach teaches you how to play outdoor games.

Lunch will be in the big cafeteria. I saw this room when Mom and I went to see Davidson. This room will have lots of kids and will be loud. If I am not comfortable, rather than get upset, I can tell the teacher and she will let me eat lunch in the classroom where it is quieter.

After lunch is nap time. Some kids will sleep and others will do quiet activities. Once school starts I will see if I want to nap or if I want to do a quiet activity.

The first couple of days of school are tough for everyone. It might be a little crazy. All the kids are new at the school and it can make them nervous. That is OK to be nervous. If I am nervous I just need to tell my teacher and she can help me.

At 3 p.m. when school gets out mom and Meg will pick me up and we will walk home.

I am starting Davidson school and it is a big-kid school. My school day will be longer than it was at Westminster and the school is bigger. Whenever I feel like I am nervous or not happy I need to tell my teacher.

Just like Mrs. Miles and Mrs. Cheever, Mrs. Anderson is there to help me. My teacher can help me get used to big-kid school. I just need to use my words.

It is very important that I behave at school. Mrs. Anderson likes when I use my words, am patient and am nice to the other kids.

Mrs. Anderson likes good behavior so much that she will give me and the other kids Smile Dollars for being good. On Fridays, those in my class who have earned Smile Dollars will be able to go to the treasure chest to get a treat!

Mom and Dad like good behavior too. Using my words, being patient and being nice to others is the right thing to do. If I have earned Smile Dollars at school Mom and Dad will also let me have a treat.

Wow! Just think of all the exciting things that can happen at big-kid school. I will learn a lot and be around other kids. I am doing big kid things now that I am six.

Note: We had good results with this Social Story. He listened and retained the story so well that the first day of school instead of a nap he told his teacher and said, “I want to do a quiet activity.”

Related Article:

Behaving In My Class Social Story and Tips on How to Write Your Own

For more information about Social Stories, Carol Gray and…

Click Here.

IEP Meme – The Preschool Years

February 9, 2012 By in The Preschool Years Tags: , , , , , , 7 Comments

I feel like a dinosaur.

The ease of communication and sharing amongst parents today is phenomenal. When I think back to when Ted was in kindergarten, local parents got together in support groups, which always fell apart after a few meetings because it was a hard thing to do when you have special needs kids. Getting a babysitter so you can go to a meeting, well, HAH, that just didn’t happen. Moreover, having the energy at the end of the day to go to a meeting, well, another HAH, because all I really wanted to do was go to bed.

So these blogs are awesome. And before I go any further, I just have to say that I admire the (mostly) moms who pen them. Their ability to write so eloquently about the pain and the joy, AS THEY EXPERIENCE IT, is to be commended. For I write with the pause that time brings, my emotions tempered, simply reflecting on what was. A much easier task.

Still awkward with following blogs and unsure of the etiquette, it is only with the upmost respect that I acknowledge having read Outrunning the Storm’s post about the IEP meme that is going around the Asperger blog world. Thank you. I also believe in transparency and sharing the story of what we have gone through, or are going through, and the lessons learned from those experiences.

So with that said, I would like to participate in the IEP meme. But I am going to do so with a twist. Since Ted has graduated and we have 16 years of history, I will break it down into multiple posts centered around these three periods: The Preschool Years, The Before Teddy v. County Board of Education Years (K-3) and the After Teddy v. County Board of Education Years (4-12). Maybe even, if there is interest, I can delve into what happens after the high school years. But first things first…

The Preschool Years

Diagnosis: Ted was diagnosed with Asperger’s in 1995. He was four. This was done through a private-practice school psychologist paid for by us.

Early Services:

Occupational Therapy began in September 1995, two months before diagnosis. (Although we were seven months into TRYING to get a dx.) He went 45 minutes, twice a week for almost two years and was paid for by insurance and copays.

At the time of initial assessment these were some of the issues:

Fine Motor: No hand dominance, could not cross midline, inconsistent supination, unable to cut, unable to copy simple shapes, unable to hold utensils or pencil.

Gross Motor: Couldn’t balance on one foot for more than 3 seconds, unable to catch large ball. Kicked, hopped and threw inconsistently.

Conclusions: He made major strides in OT and as a result there was a decrease in his frustration level. Among many important school-ready skills he established hand dominance,  grasping a pencil and crossing midline.

School Psychologist. Following the diagnosis, the first priority was to return Teddy to a preschool setting. The psychologist selected a private preschool and attended with Teddy to transition him to school and to train the teachers. The preschool and psychologist were paid for by us.

Conclusions: What can I say about the woman who saved my life? I was drowning and so was my son and Louisa threw us a life-line. The day in her office, when she first said “Asperger’s” changed me forever. I was no longer crazy, my son was no longer crazy and I was not ever so alone again. She is one of the most important people I will ever know in my life, not to mention one of my very dearest friends.

In a “funner” moment. Louisa came to visit a few years ago and here we are together on the Jetski.

Physical Therapy evaluation was performed to get recommendations for a sensory integration approach and treatment strategies for both home and school. This was done in May 1997 prior to Ted’s start of kindergarten that August. This was paid for by us.

While rereading the evaluation today this one sentence summed up my almost six-year-old,

Teddy is an intense, motor driven and hyper-active child who seems to want to please and cooperate, but who is experiencing moderate to severe difficulty with emotional and physical self-modulation including listening, calming, as well as socialization and activity transitions.

Conclusions: I can’t say enough about how important it was for ME to better understand the challenges Teddy faced with his sensory system. In many ways it was a force greater than himself that dominated him. Learning techniques to help him get some control was vital and seemed to me to be the crux of his disability and thus its management. Honestly though, the school system did nothing to incorporate this knowledge.

Developmental Nurse Practitioner was seen for medication visits every three months. I also did counseling sessions with her. I was actually TAUGHT to be a “helicopter parent.” Such is the life of an Asperger’s mom. This was paid for by our insurance and copays.

Conclusions: Did I like giving my kid medicine? Absolutely not. Do I think it helped? I honestly don’t know. I do believe most of the prescribing was guess-work. And we had many negative side-effects. For example, on Dexedrine Teddy couldn’t sleep or eat. One night he quietly sat under his sister’s crib and cut off all his hair and neatly placed it in his Yankees baseball cap. We discovered this when we checked on the kids before we went to sleep. That was the last dose of Dexedrine he took. The next day we had his head shaved and I can’t tell you how many people thought my underweight, bald child had cancer. Ted has not taken any medication since he was 13.

PeeWee Bowling: Not a service but something I got Teddy involved in so that he could participate in an activity. Sports such as T-ball and soccer were out of the question because Teddy couldn’t function in a group. I selected bowling because it was a parallel sport. His performance was entirely independent yet he was alongside others, taking turns, and part of a league. We did this every Saturday morning for a year.

Conclusions: Excellent activity. Bowling is VERY structured and predictable which helped Teddy’s comfort level. Moreover, the bumpers allowed success with every ball and was good physical therapy as well as social skills practice. It also let him be NORMAL. That was priceless.

That pretty much sums up the preschool years. Next, the K-3 years. Yipes. Those were, well, let’s just say, that’s going to be several posts.

Thanks for reading. Maybe something helped. I sure hope so. Or maybe it just helps to know  someone has been where you are now. As my friend Scott says, “God bless the Internet.”