ASPERGER'S SYNDROME: A parent's guide to navigate the details.

To prepare for my first meeting with my son's school special education coordinator and teachers I went to several websites and found what I thought were excellent ideas. I would like to think that I have fully prepared for this meeting by reviewing his work, organizing his file, and reading how IEPs are planned. One of the most interesting articles I read was from www.wrightslaw.com, stating that an IEP should follow the SMART model in its goals: (S)mart, (M)easurable, (A)ctionable, (R)elevant, and (T)ime limit. On their website Wrightslaw gives great examples of what these are, specifically discussing subjective measurement of those goals. The article gives the example of a parent who was told by a teacher that her son pinched children, and that he needed to stop doing this. The parent asked how they could stop it, and the teacher stated by observation, and verbal correction. The parent asked how would the teacher measure this? By watching him she replied. Now the parent, being a SMART person pushed the teacher for a non-subjective means of measurement, and the teacher, with exasperation, stated that the boy would reduce his pinching to 1 time per hour! While I may have not done this example the justice it deserves, it does show how specific a parent needs to be to help their child.

The other site I looked at was Learning Disabilities of America (LDAA.org). One article encouraged the parent to use the 5Ws+1H to develop goals for IEPs. Who wil be teaching your child? What is the goal? Where is the child going to be taught? When will his goal be reached? Why is the goal important? How will the child's goal be measured? This is a little easier to remember than SMART but its about the same. Make sure that each goal on the IEP answers these questions.

The most important thing to do is make sure that your emotions do not cloud your judgement and create bad feelings from the teacher's perspective. I let this happen in my first ARC meeting, and am trying to alleviate the tension with the school counsellor and my son's teacher. I had examples of his recent school work and asked the teacher why she did not act upon the zeros and low scores on his work. I pointed out that no one asked my son what he heard in the directions or why he answered that way. I was pretty upset, when I viewed the his work over a month, and pointed out that he only understands one-step directions, and that abstract concepts needed to be explained, visually, to him. I embarrassed the teacher in front of a school administrator. While not intentioned she took it badly. We made ammends with each other, and she has become Josh's best advocate at school.

Anyway, I'll try to do better, and repair the damage. unfortunately, there is a lot of politcking involved. Wish me luck!

Thanks for reading!

I am sure that our story is familiar to you, but here it is: After a miscarriage in 1995, we realized that we wanted a child. I was 31, I still had time...after 5-6 years of trying, we gave up. At the tender age of 37, my husband 41, I found myself pregnant. As with any parent who was desperate to have a child, we were ecstatic. Since I was considered a geriatric mother, AKA 'high risk,' I submitted to the usual tests, poking, and proddings. We were informed, after an amniocentesis, that our son had a 4% chance of having a birth defect...we continued with the pregnancy. My pregnancy was difficult, I consistently had contractions from months 5-9. I was put on bed rest with 3.5 months to go! After a pro-longed birth our beautiful baby boy was born via C-Section. Most benchmarks were achieved a month or two later than all of the books expected; however, they were achieved. The tantrums began at the age of two. What happened to my happy, loving baby? He began to hit, pinch, pull hair, and scream if he did not get his way. The worst experience was when I took him to a children's salon to get a hair cut. He had been going there since his first cut at 1 year. This was his third. Because he would not cooperate, I put him in my lap, and held his arms so that he would not knock out the stylist. When she turned on the clippers, he bit my forearm, so hard, that it bruised the muscle. ALL of my more experienced relatives said that we were spoiling him too much, and that we did not know what we were doing. Because we could not control his behavior, particularly in a public setting, we thought we had to be the worst parents on the face of the earth.

Advice given to us was to spank, take away toys, or leave a public place when a tantrum began. Again, I could not understand what we were doing wrong. I began to visit with his pediatrician about his behavior, and how desperate I was to fix what we thought we had created, a little monster. Keep in mind that a few months prior to all of this, he was a happy, well-adjusted child. At times, it seemed that we were bargaining with the devil himself. He began to physically hurt those around him, particularly my mother who was the live-in nanny. She, at first, hid these episodes, then I began to notice bruises on her arms, and she explained that my son was pinching and biting her. I blamed her for that behavior, and she was asked to move out when the behaviors got really bad...well. I quit my job that I had for 15 years in order to be a perfect mother.I just knew that all of this was because I was a working mom, Much to my dismay, and parental pride, the behaviors continued. As I began to take him to the park, and malls to spend quality time with him, he continued his series of tantrums, which usually resulted in some minor injury, to me. Then at the park, he hit my best friend's little girl. We left the park, immediatly. However much to the credit of my best friend, they continued to play on a daiy basis. One day, after the park, we went to Ci Ci's Pizza in the mall. All went well. then we walked the mall, and while we were walking by the toy store, he wanted me to buy him a toy, displayed in the window, and I told him 'No.' He proceeded to scream, kick, and bite. I just sat on the floor, in full view of everybody and God, and wrapped my arms and legs around him. After a lifetime, he calmed down enough for me to drag him to the car. So, we would go to the park or someone's house but we could not go out in public. For about a year, we did not go out to eat because of his behavior in a public place.

Again, I spoke with his doctor. She suggested that we begin timeouts, and loss of privileges. This worked as well as a broken toaster. We were desperate!!! Here I was a 'Stay-at-Home Mom,' and I could not help my child! At the ripe-old age of 4, he qualified to go to pre-school due to a speech impairment. The teachers that tested him were impressed with his abilities in some areas, yet expressed concern that he could not do some of the most basic things. We attributed this to being older parents, whose experiences colored our child rearing perceptions, and our lack of exerience with children, in general. Most of our relatives agreed.

He did well in pre-school, but I swear that every time I volunteered in the class, all I observed them doing was singing songs. No behavior issues were noted.

I became a substitute teacher, to share the wealth of my experiece raising 1 son, beginning the Kindergarten year. Kindergarten was half days. The other half of the day, I found an After-K program at a local church. He seemed to love kindergarten, and absolutely adored going to daycare. The first part of the year, he did well, or so we thought. In March, I sent my new cell phone number to his teacher. She called that same day, and stated that Joshua had been taken to the time-out room due to a tantrum. She, further, informed me that this was not the first time!! What was this?!! She began to tell me about behaviors that were familiar to me. I asked her how long this had been going on, since I was blissfully ignorant of ANY issues at school. She stated since Christmas. Needless to say, I was royally PO'd (for lack of better terms) because she did not even cover these behaviors in our parent -teacher conferences. When I asked her 'WHY?!' she stated that she did not have time to call because of her 2 classes. Well, I told her that, basically, she deserved what she got since I could not help her if I was not informed about what was going on. We agreed on a behavior sheet which lasted all of two weeks. I spoke with his After-K teacher, and asked her if there were any problems, and she said my son was delightful to work with, and that he was a sweet boy. I was confounded. I figured that his teacher had done something that he did not like, and he was holding it against her. After all, he had a long memory.

Also, in March, he began swim lessons, with about 10 other kids of his age. We went to a sports complex, and I was confronted by the manager, when I tried to take him into the Ladies locker room to change. The manager told me that he would have to go into the Men's locker room to change. Since I was reluctant to send a 4-year old boy into a Men's locker room, by himself, I took him to the rest room to change. Then I was told that he was too old to go into the ladie's room. Several days, I took him home wet. Then I had the brilliant idea to practice dressing and undressing at home, so that he could learn to change his clothes in a public place. Other children his age were doing it. The first day, as I anxiously awaited him, he took 30 minutes changing. I had to send in several guys to check on his progress, while I impatiently waited. This continued several more times, and we continued to practice. One day, after 40 minutes of waiting, his swim teacher came out of the locker room, and told me that my son was running around the locker room buck naked, and pointing to his private parts. After I came to, the manager emptied the locker room, and I went in, and retrieved my son, who could not remember which locker he put his clothes in. I was relieved that all of the other parents were gone, when we exited.

That summer was challenging but we made it to first grade. Needless to say, after two weeks of school, I got a call from his teacher, stating that my son would go into the boys restroom, pull his underwear and pants down, and use the urinal. Then he would show everyone his penis and laugh. Well I was appalled but told her that most of the time I took my son into the ladies restroom, and that it was entirely possible that he had never used a urinal because he was with me most of the time. I asked my husband to work with him on this, as I was not well equipped. He was told to use the stall, with very specific instructions. It took about two weeks of repeated direction from the teacher and myself to get this right; go to a stall, shut the door, lock the door, pull down your pants, urinate, pull your pants up, etc., etc...you get the idea. Finally, he was correctly using a public bathroom by himself. He began to tantrum at school, and disrespect the teacher, as well as the other students. He, also, began chewing on his finger and clothes. He developd a callous on his finger, and all of his shirts have holes in the sleeve, and the top of the shirt. After heated arguements with my husband, I made an appointment with a psychiatrist, convinced that he had ADHD. I MADE my husband go with us. The doctor informed us that my son had ADHD, after hearing MY harrowing tale. The psychiatrist stated that my son needed immediate help, and had his prescription pad. At that point, my husband and the psychiatrist proceeded to have an arguement; the psychiatrist terminated the office visit, and walked out of the room, instructing his receptionist to charge us $250.00.

After begging the school for help to get him evaluated and being refused, i waited until March,and the rest was history thanks to Dr.Michael Rieser. Josh is a great kid who has issues, and they are being addressed.

It is a pleasure being his mother. I knw that the above is harsh but those behaviors are what MADE me realize that I was going t have to take the bull by the horns and do something. Any parent who has had difficulty with their child can understand what Josh has ben through. I only hope that by educating myself, that I can make up for past transgressions to him. I hope that he knows that welove and appreciate him, and I thank God EVERYDAY that he came into my life.

Never, I say. I was speaking to a teacher about my reading list, and how I read about Special Needs children and ways to help them. She asked e whn I was going to stop researching. I told her never, as long as I can find ways to help my son. I was taken aback by this comment, coming from a teacher I deeply respect.

Why not just stop researching ways to cure cancer? My son has made so much progress because of my persistance and research. There WILL come a time when you stop reseaching what the need is about and deal with the issues that arise...basically, becaus you want to know what your options are.

I found a lens today that was geared toward teachers but listed ways to speak and act toward your child with behavior problems. I found a well-researched lens called
Emotional Well-Being. Without continuing to look, I would never have found this wonderful lens.

As a parent, you should never assume that you have all of the answers. Finding diffrent ways to help your family cope with a special needs child that make all of you mor successful is your duty...and it is always done with love.

Since my son was 3, I realized that there were issues with his social interactions-he would charm adults, as most children do, but not connect with his peers. I would watch him on the playground, and he would wind-up playing by himself because of his inability to read social cues. What this means is that unspoken communication, which some estimate comprises 75-80% of communication, cannot be understood by Asperger's children, unless they are trained what to look for. Facial expressions that indicate anger, happiness, frustration, etc. are not visible to the AS child. As a result, they miss those social cues that are given by their peers that indicate their displeasure at what the child is doing. My son was playing with three brothers. The brothers were 'rough-housing.' When my son joined in, he was doing what they were doing. After a few minutes of Josh constantly jumping on them, they decided that they had enough of Josh. They walked away, and Josh followed, continuing to jump on them. Finally they told him to leave them alone. He kept coming, and I had to distract him, so that they wouldn't yell at him anymore. This is one example of the AS child not understanding the dynamics of their sibling relationship. Josh is an only child. While they could wrestle with each other, they did not want Josh to participate, not because they were mean, but because they thought that Josh was being overly aggressive. Their taught manners were to walk away from the other child, without hurting his feelings. The AS child wouldn't know that, and would think that he was having fun--living in the moment, and would keep trying to do the activity EVEN AFTER IT WAS OBVIOUS TO ANYONE THAT THEY WANTED TO STOP.

I have watched this scenario over and over. It would be heart-breaking to see other children avoid your child, not getting invited to birthday parties...not having friends. Once Josh was diagnosed, and I did some research, I realized that he was not trained to look for the hidden communication that takes place in such social situations. I purchased, 'Its So Much Work to be Your Friend' by Richard Lavoie. It gives you a good understanding of what children like my son experience, socially. One of the strategies in teaching them is role-playing and scripted conversations.

Role-Playing involves developing situations in which the child would find themselves in such as the play ground. Playing another child, and exhibiting physical emotional responses to events that happen, and then asking your child how he interprets those. This is easier with an older child, but through repetition, the child MAY understand that facial expressions indicate whether the other child is pleased with what is going on.

Scripted conversations begin with generic situations that may result from everyday life. The other night, I was trying to work with my son on making friends. I asked him what qualities in a person would make them a good friend (you'll have to explain to them what a quality is). He said someone nice and someone who liked the same things he did. I asked him if he knew someone who liked trains as much as he did. He stated that he most of the other boys thought his fasination with trains was babyish. I told him that I knew of a boy who liked trains, and he asked me to call his mother and see if he could play with him. Further probing, revealed that the other children on the playground had quit playing with him. When I asked him why, he began crying and stated that they didn't like him to chase them. He said he didn't have any friends and that no one liked him anymore. After mending my heart, I began working with him on questions to ask others to illicit information that would indicate that he had something in common with the others. What is your favorite toy? What TV shows do you like? What was the last movie you saw? Did you like it? What is your favorite color? What kind of music do you like? You get the idea. We have been practicing these conversations.

One other thing I did was take the day off and go speak with his teacher and guidance counsellor. I explained the situation. Both stated that he was receiving social stories in Speech class. If your child is like mine, he doesn't seem to be able to use lessons in real life...he doesn't make those connections. His teacher invited me to go to recess, and observe Josh's play ground behavior. She actually plays with her kids. She organized some games. I took Josh to where they were playing, and he played awhile, then snuck off to begin his chasing of others. As I tracked him over the play ground, he would chase others until they were tired, then they would wander off. Soon, he was running from one end of the play ground to the other in seach of his next victim. He did this for 8-10 minutes. Afterwards, I spoke with his teacher about my observations. She said she would include Josh in her organized play, and try to maintain his attention. She, too, thought this was a heart-wrenching situation. Josh is lucky that he has a caring teacher who spends time with her kids during lunch, and on the play ground. Many parents are not in this situation. All you have to do is ask, and the worst they could say is 'no.' Educators WANT parents to be involved with the school and will bend over backwards for your child if you show them you are willing to not leave it to them to help your child.

Making friends is not easy for anyone, especially for the child who has a learning disability or behavior disorder. If you don't believe that this affects their academic life, then you are sadly mistaken. Social success is revered in this culture. Think back to when you were in school, and felt unpopular or unwanted, or avoided. How did that make you feel? Did you think about it when you were in class? Did you wonder why you didn't get invited to that party? Did you not get invited to the prom? I do not want that for my son. Just one friend...

http://www.autismsocialstories.com/blog/?p=54#comment-536

11-16-2008

Here is an update to the friendship situation. Josh has been working hard in speech class, and practicing scripted conversations with me. HE HAS MADE A FRIEND!!! This is the first time that he has been invited over to another boy's house to play, and so far, no phone calls.
I called all of my friends and family who understand the huge implications in this step! We are soooo excited!

I found this poem several months ago, and it describes my son to a 'T.' I gave everyone a copy that deals with my son, including his bus driver! Hope you enjoy this insightful poem.

I am the child that looks healthy and fine.
I was born with ten fingers and toes.
But something is different, somewhere in my mind.
And what it is, nobody knows.

I am the child that struggles in school,
Though they say that I'm perfectly smart.
They tell me I'm lazy-can learn if I try
-But I don't seem to know where to start.

I am the child that won't wear the clothes
Which hurt me or bother my feet.
I dread sudden noises, can't handle most smells,
And tastes - there are few foods I'll eat.

I am the child that can't catch the ball
And runs with an awkward gait.
I am the one chosen last on the team
And I cringe as I stand there and wait.

I am the child with whom no one will play
- The one that gets bullied and teased.
I try to fit in and I want to be liked,
But nothing I do seems to please.

I am the child that tantrums and freaks
Over things that seem petty and trite.
You'll never know how I panic inside,
When I'm lost in my anger and fright.

I am the child that fidgets and squirms
Though I'm told to sit still and be good
Do you think that I choose to be out of control?
Don't you know that I would if I could?

I am the child with the broken heart
Though I act like I really don't' care.
Perhaps there's a reason God made me this way -
Some message He sent me to share.

For I am the child that needs to be loved
And accepted and valued too.
I am the child that is misunderstood,
I am different - but look just like you.

Kathy Winters is a part-time writer and full-time mother of three. She has a 14-year-old son with Asperger's Syndrome and an 11-year-old son with ADHD/Tourettes Syndrome.

Having a child with a developmental disability can and is a daunting responsibility. When you have a child like this, it should become your goal to sit down with your child and read, Read, and READ! Not only do you read with them and to them, but asking questions to ascertain comprehension.

I recently read an article from Wrightslaw.com regarding Reading Recovery and its effectiveness, http://www.wrightslaw.com/info/read.rr.research.farrall.htm. This article suggested that the Reading Recovery program wasn't successful because the program lowered the standard to which children should read. Reading Recovery is a program that targets 6 year olds to bring them to the grade average. It sighted evidence that children in urban areas were enrolled in this program, and that it only required that the children read to the 'average of the class or grade.' Why is this an issue? If you have a 1st grade class that can, on average, read to a kindergarten level, then the child in the program will only be brought to that level (remediation).

I was concerned with my child's reading level because of his inability to pay attention. I began pushing him to read. I even read him a chapter book (no pictures) when he was 6. He was interested in the story because the subject matter was related to his current obsession...pirates. He followed the plot and learned new words, sentence structure, fluency and comprehension. I would ask him questions at the end of each chapter, and if he couldn't answer them, then we re-read those sections. Now he is almost 8 and is reading 1-2 books pr day...with comprehension!

I attribute this to his teachers AND myself. Parents have to become involved in the education process. Especially something so basic as reading. There are students I work with who are in the 7th and 8th grades, who don't read as well as my second grader. Every time I work with them, it saddens me to no end. Some of these children have greater developmental disabilities than my son. This is where patience and understanding come into play. If you are trying to re- mediate a child, then use books that the child would be interested in. I work with a Reading Recovery teacher who follows the program, but allows the children to explore books and subject matter that is relatable to their age group. What this means is if you are trying to help your middle school child read to their grade level, then don't give them "The Cat in the Hat.' Work with them on the more difficult books, such as 'Diary of a Wimpy Kid' or 'The Spiderwick Chronicles.' They will get far more out of this than the elementary-targeted books. Why? Their peers are reading those books.

What makes the above difficult is the child's vocabulary may not be where it needs to be. This is where a dictionary comes in handy. Any words the child does not know, have them look it up in the dictionary. Talk about situations familiar to them, where those words can be used.

All children love to be read to. It is a special time between the parent and the child. Take time with your child to read. You will surprise yourself at the enjoyment both of you receive for this simple act. Don't depend, soley, on the school to do this for you.

I am not an xpert. I can only tell you what worked for my son. Trying different ideas or a combination of differnt things is usually the best. Explore the differnt websites, and come up with a strategy. Include your child's teacher in this strategy. Most importantly, find stories that are relevant to your child. You may be surprised, as I was, of the outcome!

This website has invaluable tools, and was recommended by Josh's psychiatrist. The parenting classes will help you adjust your parenting style to better help your child.

I recommend the following books "123-Magic," and 'The New Strong-willed Child." The first is a way to help your child with tantrums, changing routines, etc. The second involves corporeal punichment, but I read it o help me understand my son, not t whip him for things he doesn't have control over.

strong>Advocating for the Asperger's Child
Parents living with the reality of raising and educating a child with Asperger's Syndrome are often faced with a difficult task. This information will arm parents with needed knowledge to be their child's advocate.
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