Pervasive Parenting: March 2012

Sunday, March 25, 2012

Don't Say No

Last week I told you about Project Peak and how they helped to determine some things in the classroom to improve Konner’s learning environment. One of the things that Kim Ritter, the specialist with Project Peak, told us was that we shouldn’t say what not to do, but give him examples of what we want him to do. Eliminating “negative speak” is one of the toughest things to do as a parent.

When correcting a child with autism, or any child for that matter, the specialists say that it is not a good idea to use negative words. For example; if the child hits someone you shouldn’t say, “Don’t hit!” This is the obvious answer, at least for me. When you see someone doing something wrong the initial reaction is to say, “Stop!”

In order to further understand this concept I talked with Joe’l Farrar, one of our speech pathologists, and she explained that this could be confusing to Konner. What most people don’t understand is that words are still confusing to children with autism. This is why we are currently working with Konner on the who, what, when, where, why, and how questions. This concept is hard to understand, even for people who are around him for large amounts of time. This is because he’s a smart kid. Just because a kid has a high vocabulary and is really good at math and reading doesn’t mean he understands everything you’re telling him.

Joe’l explained it this way. “Just because a kid can run doesn’t mean they can compete in a marathon.” This makes sense if you think about it. Konner has the tools and the ability, but needs to train to be able to do the specialties. If I have a hammer, nails, a saw, and wood it doesn’t mean I can build a house. However, with some instruction from a carpenter I might be able fashion a livable dwelling.

So what do you do? This is a concept I’m still struggling with, but I’ll tell you some things that I’ve been told so far.

· Tell him what you want him to do: Instead of telling him not to do things, to stop, or no; tell him, “This is what I want you to do.” This is tough to grasp at first. What you should do is say something like, “You need to play nice with your brother,” or “We need to share,” instead of “Don’t take toys from others.”

· Give him choices: If he gets frustrated because he wants to do something he can’t you should give choices. For example (just an example), if he wants to play in the road instead of saying, “No you can’t play in the road,” you can say, “You can play in the yard, or in your room.” These choices may take some time, but once you make him understand that these are his only choices then it gets a little easier. With Konner we started the choices thing young and now it’s not perfect, but he usually understands that he only has two choices.

· Find out what he wants: Again, a difficult one, especially at first. This is one that we’re just beginning to explore, but it seems to be working okay. When a child acts out, especially on the spectrum, it is usually because they are frustrated because they want something, but can’t tell you what they want. This is where the communication skills come in. What you need to do instead of saying, “Stop screaming,” or, “Stop kicking things,” you should ask, “Do you need something?” This or, “Is there something wrong,” will work most times. However, I’ve found with Konner that just about any question about how he feels ends with, “Nothing’s wrong.” Again, this is a work in progress, and I’m only telling you my side of things. What works, or doesn’t work, for one child may be different for another.

· Get his attention: For this one I’m going to give you an example of something that happened at speech a few months ago. After a session was over Konner decided to take off running down the hall bolt out the backdoor of the health department. As Jennifer and Joe’l took off in pursuit he ran faster. The biggest fear was that he was headed for the road and into the parking lot. When they yelled, Stop!” he just continued to run. So Joe’l decided to distract him. She started clapping and yelled, “Yeah Konner you won!” Konner stopped and disaster was averted. This is just an example. You can try to tell them that there is something in a tree, or that their favorite cartoon character is around. Whatever gets them to stop will help in desperate situations.

· Pay attention to how you say things: I was told that I need to count how many times in a day I use negative speak in conversation with Konner. After about 20 times in two hours I lost count. I challenge you to do the same thing. How many times in a day do you say no or stop to your child? My guess is it’s more than you care to count. This is a change that will take time. I’m trying really hard, but it’s about as tough as it would be to quit smoking (I’m guessing; and without the shakes). However, it can be detrimental.

As I said, these are only suggestions. I don’t have all the answers. Who does? This has been a very frustrating lesson for me. As I’ve said in the past discipline is a very wearisome task. You can’t use conventional means. You just have to try to explain things the way they should be and have faith that they will begin to understand right from wrong.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at pervasiveparenting@hotmail.com. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.

Wednesday, March 21, 2012

A Peak Performance

Konner had a visitor at school last week. A lady by the name of Kim Ritter spent the day at the school and provided some information that will hopefully help Konner obtain an education with less distraction and aggravation. Ritter is a member of the Project Peak team.

So you may be asking yourself, what is project peak?

According to the Autism Center of Tulsa website: “In 2008, the Oklahoma Legislature passed updates to the law affecting school district professional development programs, requiring all districts beginning in the 2009-10 school year to offer at least one time per year, training in the area of autism from early childhood programs through grade three. The training must include a minimum awareness of the characteristics of autism, resources available, and an introduction to positive behavior supports to challenging behavior.” Project peak provides that training and was recently at the Kiamichi Technology Center in Poteau to help local educators and advocates by providing them with the knowledge to help area students.

That’s a good generic answer, but what they have done with Konner is give us reassurance that we are doing what we need to in order to provide Konner with the best education possible.

So here is a breakdown of what they did last week. Ritter came to the school and spent half the day observing Konner, his teachers, and his peers. She also looked over the current IEP we have in place, along with data collected by his paraprofessional Mindy Hale. Mindy had been keeping track of his behavior for several weeks. All of the information provided, along with the observations, helped her to provide input to help us modify the classroom and actions we can take to help minimize his outbursts.

Ritter met with the IEP team for the second half of the day to go over the information and answer any questions they had. While I was not available for the meeting Jen was and said that it was an enlightening meeting.

I’m going to give some examples of what was observed and the suggestions provided. These all come from the Consultation Summary provided to the team.

Areas of Concern: Konner often disrupts class by yelling out when he gets mad and needs redirection. He often will use physical aggression and throw objects at others, usually to get someone to “re-do” a routine or ritual, allow him to do what he wants, etc.

She then provides a plan of action which includes who needs to do something to help, what to do, and when it needs to be implemented. The follow are examples of suggestions that we should employ in the classroom.

· Action Plan: Make a visual schedule for him in the classroom.

· Use self-timing procedures with duration boxes either on paper or dry erase board to extend his stay at lunch up to five or 10 minutes.

· Flexibility training with going through the doors with “positive practice” using reinforcement.

· Use choices at each activity of what he is going to work for. Remind him during work to “work quietly for your (give a final result or reward).” Avoid reminding him of what he’s not supposed to do. [Keep this in mind. I’ll have more on this next week.]

· Provide stars on his reinforcer board more frequently. Use a “1^st/then board to remind him of what he’s working for.

· Use peers as much as possible to provide prompting and try to reduce adult direction and instructions.

· Try not to disrupt natural peer social interactions.

· May need to teach specific social skills with one peer – pulled by reverse inclusion and slowly work towards social skills lessons in a regular class with all his peers.

· When you see Konner getting agitated ask if he could help you to run an errand with you to provide a physical break without using the word “break”.

· Analyze new data to use for new IEP.

I provide all of this as an example of what she did to try and help. I also have included this because I hope it may sound like something that your child may be doing and can give you some insight into how you may ease the results.

With this information she left several pages of more suggestions that coincide with these. An example is: “Coach and reinforce his peers in how to respond to, help, or prompt him to reduce need for (Para).”

There were also several suggestions on new goals for the IEP and how to improve the current IEP.

I would like to give kudos to a major player in this process, Mindy Hale. She is his para and has been the one gathering most of the information. Ritter even gave props for taking good data.

If you would like some more information on Project Peak you can contact them at (405) 271-6824. This is a division of the University of Oklahoma Health Sciences Center’s Child Study Center.

You Better Think

I have an interesting problem that has recently begun with Konner. He has an issue with doing things when asked. I know, I know, that’s not unusual for a child with autism, or any child for that matter, but it is a little different than what I’m used to dealing with. Konner will become defiant when I ask him to do something and then change my mind.

The following is not my usual research filled column. These are just a few stories that I hope will brighten your day and make you think a little before you speak…especially to a person with autism.

In the past when I ask Konner to do something and then change my direction there has been some pause and confusion, but after a few minutes he has understood and moved on. However, in the past couple weeks I have noticed a completely different pattern. If I tell him to do something and then change my mind he throws a fit.

Let me give you an example. Last Wednesday night I was preparing for Cub Scout when Konner asked if he could take his juice pouch with him to the meeting. My first response was sure. I was really busy and didn’t think before I spoke. I automatically just said yes and went on. Then I realized that we hold scouts in the local church and it may not be the best idea to let him take his drink. I thought about the other children, how they would probably want one, that there may or may not be a policy against drinks in the church, and that he could just finish before we left. After this, seemingly harmless, thought process I said, “Konner we can’t take your juice to scouts,” and proceeded to explain all the above reasons.

This normally would not be a problem. Not sure what has changed recently, but he immediately began to break down in near tears. He began yelling, “You said I could Daddy! You told me I could!” I continued to plead with him about the logistics of taking the juice with him and that we probably shouldn’t. This was to no avail. He just continued to explain to me that I had already told him to do things one way, and that I couldn’t change my mind.

So, being the thoughtful person I am I decided to do what any intelligent parent would, or so I thought, to rectify the situation. I explained to him, “Konner I think this time it will be okay to take your juice.” Ah, let the peace begin, right? Wrong!

“Dad, you already told me I can’t,” he screamed. “You said I can’t take my juice to scouts! You said I can’t have it in the church. You said.” This continued for a few minutes as I began to explain that I was wrong, and people change their minds, and it’s okay to do that.

Nothing doing, he’s not budging. So I then ask the next logical question which is, “What do you want to do? Do you want to take the juice or not?”

His reply is, “I want to take it.”

I say, “Great, then you can take it.”

“No! You said I can’t,” he screams again.

“Okay, then don’t,” I retort.

“But I want to take my juice,” he said.

This went on for a few minutes before I could get him calmed down long enough to get him to move toward the door to go to scouts. So on the way out the door I say, “Go get in the car.” He looks around and says, “Where’s the car?” I look and realize that Jen has the car and we have the truck. So I said, “Well I meant the truck.”

Yep, you guessed it; we went into meltdown mode again.

“You told me to get in the car,” he said.

“Do you see the car?”

“No!”

“Then we can’t get in the car, so we’ll have to get in the truck.”

“But you told me to get in the car.”

So after a few more minutes of arguing laced with screams we got to Cub Scouts.

They say with a child with autism you have to pick your battles. When do you really want to deal with the screaming and meltdowns, and when do you just want to resolve the issue temporarily and deal with it later. The following is an example of my quick thinking. It’s not ideal, but it works if you are exhausted and don’t feel like picking that struggle.

Sunday night I asked Konner to get in the bath. As I said the words I looked up and saw that Kruz was not ready to take a bath yet because he was in the middle of eating his supper. I quickly said, “Konner why don’t you wait until Kruz is ready?”

“But you said to take a bath,” he said, and the battle began.

“I know I did, and I changed my mind because Kruz needs a bath too,” I said.

“But you said to take a bath,” he screamed back.

So, again thinking it was the right thing to do, I said, “Then go ahead and take a bath.”

“You told me not to,” he said teary-eyed.

So I automatically began the back-stepping.

“Ok, what do you want to do?”

“Take a bath.”

“Then take a bath”

“But you told me not to.”

So, as I said, I was using my noggin this night, I looked at him and said, “Go ask your mom what you should do.” Now, many will think this was just a way to get my wife to deal with the situation, and in a small way it kind of was. However, I knew that, if she was listening to me, she would give him an answer that would override anything that I have told him.

It worked!

She said, “Konner you need to take a bath.”

He looked at me and said, “Dad mom said to take a bath and I’m going to listen to her and not you.” Then he turned around and walked to the bathroom.

This is the one time in his life that I’m glad he didn’t listen to what I said.

You Took The Words Right Out Of My Mouth

Often times when talking to parents I get asked, “Why does my child need speech therapy? They can talk just fine.” So, why would a child who is very verbal still need the help of a speech pathologist? The problem lies far beyond the articulation issues. There are many other forms of communication that are not being used.

According to About.com: “Almost anyone diagnosed with an autism spectrum disorder will be recommended for speech therapy. This may seem odd, as many autistic people are either non-verbal (at the lower end of the spectrum) or extremely verbal (at the upper end of the spectrum). But even very verbal people with Asperger's Syndrome are likely to misuse and misunderstand language on a regular basis. And even non-verbal people can certainly develop communication skills - and may even develop spoken language skills over time.”

At an early age speech may be just the thing to help your child become verbal. When Konner was diagnosed at three years old he didn’t speak much at all. In fact he had gone through the regression that usually comes with autism. This is when they speak, and then suddenly become non-verbal again. Since Konner is high-functioning we have been blessed that he now speaks very well. This is due to the fact that we have worked with several speech pathologists to obtain this goal. There are other parents that we know who have more advanced autistic children that are still waiting to hear their children speak again.

However, even though he is talking well there are some communication, social, and comprehensive issues that we are still working with.

Let’s look at what a speech pathologist can do. According to About.com: “Speech therapy involves much more than simply teaching a child to correctly pronounce words. In fact, a speech therapist working with an autistic child or adult may work on a wide range of skills including:

· Non-verbal communication. This may include teaching gestural communication, or training with PECS (picture exchange cards), electronic talking devices, and other non-verbal communication tools.

· Speech pragmatics. It's all well and good to know how to say "good morning." But it's just as important to know when, how and to whom you should say it.

· Conversation skills. Knowing how to make statements is not the same thing as carrying on conversations. Speech therapists may work on back-and-forth exchange, sometimes known as "joint attention."

· Concept skills. A person's ability to state abstract concepts doesn't always reflect their ability to understand them. Autistic people often have a tough time with ideas like "few," "justice," and "liberty." Speech therapists may work on building concept skills.”

There are a couple things that both of our speech therapists are working on with Konner that may seem strange to someone unfamiliar with their services. They are working to help him understand the who, what, when, where, why, and how questions. They are working in groups to help him with social interaction, especially in a classroom setting. This includes taking turns, working with others, asking for help, and other manner issues. As mentioned in previous articles Konner is having issues with opening doors. Both pathologists have been working to help with this problem as well.

In addition to working with the child, the pathologist works with teachers, parents, and paraprofessionals to help them understand what they need to do to help the child.

If you feel that your child may need these services you can ask the school to test, or find outside professional to get more testing.

Your Love Is Like Bad Medicine

As mentioned in previous columns we have been working with Konner to adjust his medicines. This has been a challenge in itself, but one of the main issues we’ve had has been just trying to get him to take the pills. He doesn’t want to, or can’t, swallow the pills. I asked my followers on facebook to give me a few hints as to what they try with their children. In this week’s article I hope to share some of these tips along with what we have found that help.

The first thing you have to pay attention to is what type of medicine your child is taking. I’m not talking about Ritalin vs. Concerta. I’m talking about the size and shape; whether it’s time released or not; etc. There are two main types of solid medicine forms. There are tablets, and capsules. Tablets are also solid forms, but can be different shapes. Capsules are medicines enclosed into dissolvable shells to be taken orally (usually).

If you have a capsule then it is usually okay to break the capsule apart. This is what we had to do with Konner. We break apart one of his medicines and sprinkle it on his tongue. This is followed with a glass of milk to wash it down. I think, of course you can use any type of drink that the child likes. One parent explained to me that she was told as a child that orange juice is the only thing that can help the medicine work (or something to that affect), so to this day, even as an adult, she has to have OJ to wash down her medicine.

However, if you are taking a tablet this technique will not always work. You can purchase a tablet crusher and/or cutter to reduce the size of the tablets. This is what we do with Konner’s second medicine. We purchased a pill crusher, you can get one at just about any drug store or pharmacy around, and use it to compress his pills into dust and sprinkle that on his tongue. This again is washed down with milk. One parent recommended that you mix it with something like apple sauce or pudding.

One thing to watch for is time released tablets though. Some tablets are made to release a second dosage of medicine after the first layer has dissolved. You don’t want to cut or crush those. This will cause the product in the middle to be released all at once, and may cause more serious issues.

One family found a special cup that they use and said their son does well with it. There are a couple different products on the market to help with swallowing pills. Oralflo makes a Pill Swallowing Cup. This one seems to be very popular, but is hard to find in this area of the country. The other cup was a shelf cup which had a specially designed ledge to set the pill on called the Pill Taker’s Cup. When the liquid comes to the top it picks up the pill and helps it flow into the mouth and down the throat easily. This is the one that was suggested by the aforementioned parent. I looked all over for this; in Wal-Mart, Sullin’s Drug Store, and Walgreens. I never found one, but I did find it online, so this may be where you could get one.

Along the same lines, one family just lets the medicine dissolve in a cup of liquid and then uses something to mask the taste. This is not a bad idea, I would recommend that you check with the pharmacist or doctor to make sure that it doesn’t take away from the potency of the medicine.

Several families said that they practiced with candy to help their child get used to the swallowing reaction. They recommended that you use Tic Tacs, Smarties, or M&Ms and use them. On Aboutourkids.com I found similar advice that said to use the smaller candy and work your way up to a larger candy until you have something comparable in size to the pill you are expecting the child to swallow. One thing I would say about using candy is to make sure that your child knows the difference between candy and medicine.

Another uses an oral syringe and shoots the medicine in the child’s mouth. This is a great idea. We couldn’t get Konner to take medicine this way though. He just kept spitting it out.

The main thing I would do is try to work with your doctor to find something that is a good fit for the situation. We were fortunate enough that Dr. Jon Roth was willing to change his medicine after realizing that we had to crush the pill and couldn’t cut the time-released tablet.

In the end, it really doesn’t matter what technique you use as long as you can get your child to take the medicine, and your method doesn’t change the way the drug works.

As mentioned before, always ask the doctor or pharmacist before trying any of these methods. I’m not an expert, and can only speak from my experiences. If you are unsure of anything it is best to consult an expert.

Doctor, Doctor Give Me The News

A few months ago we were really having discipline problems with Konner. He was aggressive in class, defiant, and had trouble focusing. One of our speech therapists recommended that we visit a doctor in Edmond who she had heard about. After talking on the phone with him, Jen decided that we needed to see him, and shortly after were on our way to our first appointment with Dr. Jon Roth.

Before I get into what Dr. Roth has done to help us with Konner let me give a little of his credentials. Just by checking out his web page at www.jonrothmd.com you can see from the homepage that he is “dedicated to helping families by evaluating children with developmental and behavioral issues.” This means he is geared toward any developmental and behavior issues, not just autism. He graduated from Mount Sinai Medical School in 1984. According to the site: “ I continued my training as a physician with a pediatric residency at the University of Connecticut and then a three year fellowship in neonatology at the University of Texas at Houston. In 2008, he began to focus on children with developmental and behavioral issues. Some of these include: Attention Deficit Hyperactivity Disorder (ADHD), developmental delay, mood disorder, school problems, oppositional disorder, sleep disorder, and neonatal follow-ups.

When we first met with Dr. Roth I realized that he was knowledgeable in these areas. He is also very personable. He’s really about working with the families and the children to get the best possible care. He talks in a way that you can easily understand and is really good with the kids. When you call his office you usually talk to him rather than a receptionist or nurse. You actually get to discuss your issues with the doctor. Jen has called him about several different issues, and he is very open to your problems and input. We explained that we are about three hours away, and he works with us on issues that he can through phone calls. What he can’t deal with on the phone we work out in reasonably scheduled appointments.

The other thing I was impressed with is the fact that he doesn’t just work with one medicine and stick with it. When Konner had to have an EEG a few years back we talked to the neurologist about how he works with medicines. One thing he said was that some doctors have their favorites and they stick with them regardless of the child’s reactions to them. All children are different and react differently because of body chemistry. That is why the neurologist would work about eight different meds in two week intervals and see which ones worked better. He would monitor the entire process and if the child seemed to be zombified or “zoned out” he would either discontinue or cut back the dosage. Dr. Roth has a similar approach. He was worked with us on our medicines with Konner. There are some that seemed to not work, and others that he just couldn’t take for ingestion reasons. Dr. Roth worked with us to get something that helped.

He uses input from the parents, teachers, and other people in the child’s life to help get the most information for your child. He uses that information to medicate in the best way for the patient.

He has worked with Konner on his focus in school and at home as well as his behavior problems. The meds that he has prescribed for the ADHD symptoms seem to help out. We are now trying some different medicines to help with the behavior/mood issues that Konner is having.

The website also says that he will be an advocate for your child. “I will work with the child's school and other health care professionals to provide your child with the best care possible. These professionals include special education teachers, pediatricians, psychologists, speech and language therapists, and occupational and physical therapists. Beyond the initial evaluation, I will provide ongoing support for your child.”

If you’re having any of these issues I highly recommend giving Dr. Roth a call. He may be a little out of the way for some of us, but it seems to be worth it, at least for us.

Paid In Full

When caring for a child with autism things can get expensive. There are many things that can begin to eat away at your bank account. Even if you find that some services are free to you through the school or other programs you may be lucky enough to have, it never hurts to have extra sources of money. If you are in Oklahoma I may have a way to help with these growing costs.

As I have mentioned in the past, Konner attends numerous therapies each week to help with different issues caused by his disorder. There is occupational therapy twice a week, speech therapy three times a week, and behavior therapy once a week. While the OT and two sessions of speech therapy are paid for through the school, the others are (or were) out of pocket expenses.

Even with insurance there are many types of services that are not covered. This is because autism, although actually a neurological disorder, is considered a mental disability. Many know that these are not covered with your average health insurance.

Oklahoma residents have a resource that many don’t even know about. Through the Oklahoma Department of Human Services families may be eligible through The Tax Equity and Fiscal Responsibility Act (TEFRA) of 1992 which allows children with physical or mental disabilities, who would not ordinarily be eligible for State Supplemental Income benefits because of their parent's income or resources, to become eligible for SoonerCare (Medicaid).

We actually learned about this program through our first psychologist Dr. Lisa Fitzgibbons. She recommended that we apply to help with costs.

I’m not going to lie and tell you that it’s easy to apply for. In fact, it’s a pretty big ordeal. The first time we tried we didn’t have everything together in time and had to reapply. However, it’s well worth it. Hopefully I can give you some tips to help you out.

The first thing to do is to visit the OKDHS website at: http://www.okdhs.org/programsandservices/health/tefra/. This link will take you directly to the TEFRA information with links to help you gather everything you need and download the forms that you will have to fill out.

According to the website the following are the eligibility requirements:

Be under age 19;

Meet the Social Security definition of disability (which falls under the following criteria: you cannot do work that you did before; DHS decides that you cannot adjust to other work because of your medical condition(s); your disability has lasted or is expected to last for at least one year or to result in death).

Have qualifying income and resources;
Meet an institutional level of care. The three levels are: intermediate care for the mentally retarded, nursing facility, or hospital;
It must be appropriate to care for the child at home;
The estimated cost of caring for the child at home cannot exceed the estimated cost of caring for the child in the institution.

The benefits that will be covered if you are approved include:

child health/EPSDT
dental care
emergency and non-emergency transportation
inpatient and outpatient treatment
medical equipment
occupational therapy
pharmacy
physical therapy
vision

After you have read everything and get a good idea of what you need to do you will have to contact your local DHS and contact the person who processes their TEFRA forms. You will do a request for benefits, and you will have to have a doctor fill out the physician assessment form.

You will also be selected for an interview at the DHS office. Take whatever date they give you and don’t miss it.

As mentioned before there is a small window of opportunity when filling out these forms, so make sure that you have everything you can prepared ahead of time and make copies of everything. If they ask for information more than once give it to them. Remember that no matter how frustrating it can be they are trying to get you benefits (free money). If they give you a deadline to fill out paperwork, do it and turn it in early.

Don’t call and bug them to death, but I would recommend that you check in with them frequently to make sure they have everything.

You have to reapply each year, so make sure that you fill out the annual forms and turn them in on time.

Some people may feel like this would be asking for help or taking handouts from the government. If you have a problem with that then you can ask yourself if your pride is more important than helping your child. In our case we both work, have insurance, and already pay out of pocket as much as we can for services for Konner. This was just a way of helping to obtain additional services that we wouldn’t have been able to afford otherwise. Don’t feel like you’re taking handouts. You’re just providing the best care for your child.

Without this program Konner’s medicine would have been $100 per month with insurance alone. Now they are free, our insurance pays a portion, and the TEFRA pays the rest. This is the same for doctor’s visits as well.

When it comes to therapies, we were paying $75 or more per hour for certain therapies. After being accepted to TEFRA the therapies are paid in full.

TEFRA, a national program, is available in many states, but some have their own assistance plans. If you are in a different state I would recommend that you contact your local Department of Human Services and ask if they have a similar program.

Clothes Of Sand

While reading the book “Be Different” by John Elder Robison, many things caught my attention that seemed to reflect Konner’s actions. One of these issues was in a chapter entitled Underwear With Teeth. Robison really hit on some issues we’ve had with Konner. Sensitivity to clothing is common among children on the spectrum. This is due to oversensitivity to touch.

Robison opens the chapter with, “Can you feel the labels on your underwear right now? I can. I can also feel seams on the inside of my shirt and pants. At this very moment the tags in the collar of my shirt are gnawing at my neck. Luckily, I have taught myself to ignore those feelings most of the time. Otherwise, they would drive me crazy.”

This sums up what many people with autism feel. They squirm in their seats, tug at their shirts, and are constantly over stimulated because of things that you and I can only imagine.

I think that if we had that sensation in our lives constantly it would drive us crazy too. I can think about a few occasions where I had to cut the tag out of my shirt because it was scratching my neck so much I thought I was going to go nuts. I can’t imagine this feeling constantly.

For Konner, tags have been an issue. He will usually tell us that he wants the tags cut out of his shirts if they are bothering him. Now days shirts are being made with the brand printed on the inside instead of a tag. This has cut down on the sensory issues.

We did have a shirt though that had embroidery on it and the backing on the inside rubbed and caused issues. He wouldn’t wear the shirt.

This is more of an issue for children who are non-verbal. They can’t express their frustration with these scratchy labels.

Robison said, “Sharp little fibers are biting into my back. The label on my shirt is scratching my neck. The more I think about it, the more I feel. Soon, I may have to tear all these clothes right off.”

Konner makes it a habit to strip down to his underwear as soon as he walks in the door of some place familiar. This includes home, grandma’s house, and Nana’s house. However, this has become somewhat of an issue lately. While the comfort of home, or homelike situations is fine, when it begins to happen in public you may have a problem. For example, recently we went to a cub scout meeting at the Assembly of God Church in Panama. Since I’m the first one there I was walking around turning on lights, and as I turned around I saw Konner with his pants around his ankles. I asked, “What are you doing?” He said, “I’m taking my clothes off.” Well duh! So I had to have a talk with him about taking his clothes off in public places.

The point Robison was trying to make was that, unless you want to continue to deal with stripping in public, you need to teach yourself or your child to deal with these issues. This is why he has forced himself to wear clothes no matter how much they irritate him.

While I don’t necessarily agree with Robison, I do understand his point. He said that, “Instead of fixing my clothes, I fixed myself.” This means that he has trained himself to cope with the scratching and irritation. I agree that this is the ultimate goal, for your child to desensitize their clothing irritations. However, with Konner, that is something we’re going to try and deal with later. We have so many more obstacles at this point. It doesn’t seem to be too much of a problem at this point. When you have a child on the spectrum you have to pick your fights. This is one I won’t be picking soon.

Robison does admit that he wears his underwear inside out though so that the seams don’t cut into him as much anymore.

There are a couple of other issues that some parents overlook when dressing their children, myself included. One thing to look for is clothes that are too tight and could be biting into their waistline. You may also want to check socks and make sure that they don’t bunch in their shoes. This could feel like a pebble in their shoe all day.

Remember that, for a child with sensory issues, comfort is more important than style.

Some things to do to try and help your child are to figure out what sensory issues they have, and then use therapy to deal with it. This is where an occupational therapist and/or sensory therapist come in handy. Our OT works with Konner on sensory issues during weekly sessions.

You can also look into sensory diets. A good place to start for this is the book “The Out-of-Sync Child” by Carol Stock Kranowitz, M.A. This entire book can help with sensory issues. The website www.sensory-processing-disorder.com also has a page for creating a home sensory diet.

If you find a way to cut down on, or eliminate your child’s clothing sensitivities, then you can, theoretically, cut down on the number of meltdowns and outbursts that they may have.

What A Difference You've Made In My Life

A couple years ago I wanted to find out what it was like for a person with Autism. I really wanted to know what Konner had to deal with on a daily basis first hand. That’s impossible, but the closest thing is to get the perspective of others on the spectrum. I researched internet looking for anything I could find. I found some great videos on Youtube, but I also found a couple books from people with Autism. One author in particular opened my eyes to the ways of a person on the spectrum. Now he has a second book and I have just completed it.

John Elder Robison, Author of “Look Me in the Eye” recently came out with a second book called Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachers. This seems like a perfect title considering this is basically an owner’s manual for anyone recently diagnosed with Asperger’s Syndrome or High-Functioning Autism. Robison delves into many aspects that he had troubles with when he was a child, young adult, and even now.

Robison was 40 years old before he was diagnosed with Asperger’s Syndrome. By that time he was a successful businessman, had been a flourishing electronic engineer for several famous bands and Milton Bradley toy company, and had taught himself how to deal with the neurological disorder that causes many to be social outcasts.

This book breaks down in to several sections of advice along with many great stories to help everyone including autistic and nypicals (a name Robison has given to neurotypical people). He touches on subjects including routines, manners, emotions, making friends and keeping them, dealing with bullies, sensory issues, and finding success with your talents.

I’m going to talk about some of the things that really caught my attention in the book. There are so many great lessons that I know I’m only scratching the surface, but these are things I found the most interesting.

One of the first things we notice as parents are patterns in our autistic children. This is a funny way that they are wired to make sure that things go a certain way. This is why we have routines including getting ready for school, getting ready for bed, and the way they eat or drink. At school Konner has visual schedules and timers to help transition times better.

We also notice at a young age that patterns and order are important. Many autistic children have Obsessive Compulsive Disorder (OCD). They have to have all their toys in order. Konner used to line up his cars in color order, or make a line through the house using all of our shoes, and they had to be paired correctly. Robison talks about how he has the same issue, but he has learned to deal with it. He says that if he sees blocks they should be in a certain order, and as a child if they weren’t he would get upset. He says that through the years he has learned to accept that other people may put their blocks in a different order or just pile them up; even though there is still just one way they should go for him.

He writes about how these routines are really not that uncommon to nypicals, the difference is that autistic routines are sometimes more eccentric. An example is that everyone has a certain things that they may order when they go out to eat, such a favorite drink or item. However, an autistic person may have to sit at the same table facing the same way, with the same waitress, etc. He explains, “It often seems easier and safer to repeat something I’m comfortable doing than to try new things.” I think that’s true of many people. Konner likes to eat the same thing for lunch each day – Lunchables and juice. Rarely will he get a tray from the cafeteria, and he never does as a surprise. It has to be planned out and discussed previously.

Robison talks about manners, which is something we’ve struggled with in the past with Konner. While he is doing better now, there was a time when Konner would refuse to say please and I’m sorry. I was always raised to have good manners, and believe that you can get much further in life with proper etiquette. Robison discusses his struggle with his parents and grandparents over manners. He says that the difficulty he had was that he was a logical thinker and could find no logic in manners. As he got older he understood that they could help him through life. “I came to understand that I benefited from compliance with the social rules,” said Robison. He also said that he was glad that his family kept pushing him to have good manners. They say you have to pick your fights with autistic children, and I think this is one you should probably follow through with.

He talks in-depth about emotions. This was interesting to me. He says, “One of the most important keys to getting along in society is the ability to read the nonverbal signals from the people around us.” This is something we’ve been working with Konner on. Reading other’s facial expressions. He explains that he never understood, as a child, when adults would fake crying. They had no visible damage, so there was no reason for them to cry. That would get him in trouble because people thought that he didn’t care. He explains, “How could I care? I had no idea what was going on!” People thought he was a bad kid, when in reality he was just misunderstood. These are things that autistic children have to be taught.

There are so many other things that this book included, but I think I will save them to include in future columns.

I will say that if you are struggling to understand someone on the spectrum this book is very enlightening, and I highly recommend it.

Fly Like An Eagle

Konner has never had much interest in playing sports. We’ve asked him in the past with no appeal. We’ve tried to play catch and kick a ball, and he doesn’t really try. We purchased baseball equipment and asked about soccer, but still no. However, a few months ago Jen asked him if he wanted to try cub scouts and he said yes. This turned out to be a little bit bigger adventure for me than for him, but we have seen a positive response.

When it was first suggested that he start the cub scouts I thought, “Okay, we’ll try this for a couple weeks and then he will lose interest.” I figured that if he showed interest though we should try it and see because it would be good for him to socialize with other kids.

The first meeting was interesting. With Tiger Cubs you have to have a parent there with the scout, not that we would have left him alone anyway, so I went in thinking that I would keep Konner on task during the meeting and try to keep the scout master from kicking us out. Turns out, other than a few redirections, Konner did well. He played marbles with the other boys, and actually won a game. He seemed to be interested.

The real surprise came to me about three weeks into scouting when the scout master decided to move away. He was in need of someone to take over the troops and become the new scout master. Nobody wanted to do the job, so I decided if Konner really enjoys this, and it’s the one thing that he really is interested in, I’m going to do whatever I can to help him. So, being the sucker I am, I stepped up and took over.

Let me explain something, I’ve never been a boy scout. Prior to his signup I couldn’t have done the salute, motto, etc. When I was younger we didn’t really have a scouting troop anywhere I was, so it wasn’t something readily available to me. So I went into this thing blind. With a little research online…okay, a lot of research online, I have taken over and tried to do my best to get things running.

There have been a couple meetings where Konner either didn’t attend, or had to leave early because he was over stimulated. However, those occasions were during a time when we were working on regulating his behavior medicines. For the most part he has been a good participant, and the other boys seem to understand.

In fact, Konner has done pretty well during most of the meetings, and seems to enjoy himself. He works along with the other kids, really enjoys the arts and crafts, and liked the visit to the fire department and newspaper office. He has been a great scout and earned several belt loops along the way.

According to the website Working With Scouts With Disabilities (www.wwswd.org), the group has a long history of scouts with disabilities, and an understanding of the special needs. The site states that the first Chief Scout Executive, James E. West had a disability that affected his leg.

A statement on the site includes: “The BSA's policy has always been to treat members with disabilities as much like other members as possible, but it has been traditional to make some accommodations in advancement requirements if necessary. A Scout with a permanent physical or mental disability may select an alternate merit badge in lieu of a required merit badge if his disabling condition prohibits the Scout from completing the necessary requirements of a particular required merit badge.”

The site includes links to help with scouting including policies, resources, handbooks, and other sites to help with any disability.

Scouting magazine from September 2006 included an article about working with autistic boys in scouting. One mother of a son with Asperger’s Syndrome said in the article, "I didn't know how he could participate. He made friends for the first time in his life.”

As many of us know, when a child with autism begins to focus on a task that they enjoy it is hard to get them to stop. She said that her son was inspired by working on badge requirements in his handbook. "He doesn't stop working until he's accomplished each achievement," his mother said. "One weekend, he worked hard at balancing so he could walk on a small balance beam at the next meeting. Scouting has been very helpful for his self-confidence."

Scouting has embraced the autism community so much that in certain areas entire groups of scouts with autism have been formed. This is true for a pack in Des Plaines, Ill. According to Autism: Asperger’s Digest Magazine for July/August of 2010 the group has taken strides to include autistic children. They have actually re-written the handbook so that it is autism-friendly. They have visual schedules for the boys to help keep everything as routine as possible. According to the article, by Becky Kaufman, “Scouting is a way to build relationships and skills with neurotypical peers. We needed a version of the Tiger cub program that every child at our school could participate in regardless of their challenges.” So they revised the traditional handbook so that it was uniquely for students with Autism Spectrum Disorders.

One mom said in the article, “I never thought my son would be able to do this! I love the way this enables special needs kids to belong to something that before was only for the ‘regular’ kids.”

Aside from the social interaction that helps the child with autism, Cub Scouts are great for all boys. It teaches them about citizenship, good manners, team work, responsibility, and other life skills that any child could use. These are the skills that I want both of my boys to learn.

This is also good parent/son time. There are family activities that the boys must do to earn merits. In a world where family values are lacking it’s good to know that one program is still taking a step to teach them.

Who knows, maybe someday he’ll be an Eagle Scout.

We are still looking for some scouts in the Panama/Shady Point area. If anyone is interested you can contact me on my facebook, at kodeytoney@hotmail.com, or call 963-4152.