Facing the Boogie Man: Being Flexible Part 2

As I mentioned in the last post, G has been very agitated and angry because he realized he had not been keeping up on the new Clone Wars episodes. This all came to a head again last weekend because the Clone Wars finale was scheduled. As most of us know people with autism rely heavily on routines. I believe some routines are good especially in school and work. Routines can help people with autism be more independent and less anxious.

However, an over reliance on routines can make a person become inflexible and agitated when their routine is not followed. This was our case with the Clone Wars.

I try to consistently break up G's routines and give him little challenges. The hard part for me is that many times he develops routines that I am not aware of. When these routines are disrupted he gets very upset. He feels like something bad will happen to him if they are broken. Well sometimes you've gotta face the boogie man.

In our case, this meant watching the shows out of order. So I sent the Hubbo and GA out and sat G down to watch an episode out of order. At first G didn't want to. So I bribed him with an iTunes card and Oreos. He cried as we started the first episode and was very tense. As he started watching I saw his muscles relax and he became interested in the show. We then continued to watch episodes, as many as we could, until he was caught up. He was worried he would not understand what was happening, but he was able to follow just fine.

After the shows were over I let G go and relax in his room. The next day I talked with him about what happened. He was relaxed so I could explain to him that it was nobody's fault that he missed an episode. We talked about feeling like hitting someone and making the choice not to hit. I let G now how proud I was that he didn't hit anyone and that he made a wise choice. I also reminded him that this is a very important choice because he is big and can hurt someone badly without meaning to.

Its very important now that I help G understand his actions, that I debrief him. I have found its best to wait a day before we talk. When he is agitated it is harder for him to focus on what I am saying to him. I do this because:

I'm trying to help him celebrate his good choices so he feels good about himself.

I want to remind him of important life lessons and possible consequences of bad choices.

I want to take advantage of every teaching opportunity possible, because at this point he is open to it.

It's Hard to be Flexible

This weekend G has been very agitated and angry because he realized he had not been keeping up on the new Clone Wars episodes. Star Wars is a big deal for him, but Air shows are bigger and Dad had taken him to some shows the last few weekends.

G searched the Internet and realized he was three episodes behind. He thought he could watch them online. However, one episode was not available at Cartoon Network.
I tried to explain to G and that it’s OK to watch certain shows out of order. However, he replied "That's not the way I do things. I like to watch things in order it’s the way I do it." An hour of Internet searching revealed that he could only watch a "grainy" version of the missing episode.

This led to anger, frustration, then blaming his sister. G started saying it was all her fault. "She should have let me on the computer when I wanted to." When he gets like this I have to address it quickly. He can become very mean; shaking fists feeling like he wants to hit her...

I explained that this was not his sister's fault. G had lots of time after school to get on the computer. He could have talked to me and I would have scheduled time for him. We talked about his sister for about five minutes, and then it became Dad's fault. (God give me strength here...)

Again I had to talk to him and explain that it was not Dad's fault. Still feeling angry, G decided to focus his energy on how horrible our house is. Being angry at inanimate objects is better than nothing so I let it go. We were dealing with this for a good 45 minutes and I needed a break!

Frustrated, I lamented my situation on Twitter. I noticed @myautisticson (love him) happened to be tweeting about meltdowns. He ran out of apple juice at his house which started some commotion. We tweeted and he shared his strategy, which boils down to this: alleviate the anxiety by helping your child understand how the problem will be resolved.

He shared the example of his son getting upset because there was no more apple juice. He showed his son the empty bottle of juice then explained that he would take a shower, get dressed, go to the store, buy juice and bring it home. This took away the unknown of when the juice would arrive and his son was fine.

Well I tried this approach.

I went into G's room, he was still upset. I took in some paper and a pencil because sometimes it helps to write when he gets like this. I said son, let's talk about your Clone Wars problem. Immediately he got angry and said, "I can't watch them out of order." I said, "Here let’s write down the steps to fix this." His reply, "that's stupid I don't want to do that." (Thanks a lot puberty!) At this point I thought out loud, "maybe our neighbor's have the episodes on TiVo since their son is a fan." Well guess what, the neighbors ARE GONE this weekend. The son has been going outside to look for their truck on the hour every hour since I said this. Its 10:00pm Saturday night, his PJs are on and I told him no more going out side.

Lord have mercy, pray for me!

Love Yourself Get Some Sleep

Did you know that lack of sleep, or insomnia, is one of the signs of depression? Lack of sleep alone can't cause depression, but it can make it worse. Now take into account that many children with autism sleep poorly.

A study by the UC Davis Mind Institute found that children with Autism Spectrum Disorders (ASDs) woke up in the middle of the night way more than typically developing kids regardless of their cognitive ability (Krakowiak P, Goodlin-Jones B, Hertz-Picciotto I, Croen LA, Hansen RL).

At one point I figured I had not slept through the night in over five years. When my son started sleeping through the night I still couldn't. It was like my body had become hyper vigilant. I could wake up at the slightest sound. For several years I would wake up and do work, think, or read. I started to rationalize this behavior as my alone time. My time to be productive. However, the truth was my poor sleep was escalating my depression and making it difficult for me to be productive during the day.

So with the encouragement of a therapist I began a journey to learn to sleep again. I began by exercising good sleep hygiene:

• I started to go to bed at the same time every night.


• I stopped drinking caffeine after lunch.
  
• I started to read before I went to sleep. Did you know most people only need to read for about 15 minutes and then they fall asleep? However, TV can actually keep you awake. The theory is the lights from the TV actually stimulates your brain.


• I made sure to have dinner at a regular time well before I went to sleep (around 6:00).


• I made sure the bedroom temperature felt comfortable.


• To help keep the noise level low I started sleeping with a fan. At first this made me uncomfortable. I thought what if my son did get up I couldn't hear him? So I bought a baby monitor and set the volume on high. If my son did get up I would hear him over the white noise.


• Some nights I couldn't stop thinking about things. I would work out problems in my head, make lists and think of them over and over again. I started keeping a small notepad by my bed. When my thoughts were keeping me awake, I would write them down. This helped me to relax and go to sleep.


• I also had to stop taking naps during the day.

At first I had to use drugs to go to sleep. After I got into a pattern I began to wean myself off them. It took almost a year, but it was really worth it. If you are not getting sleep, and your kid is sleeping through the night, please take care of yourself and make a commitment to retrain your body to sleep again.

House Search Blues

Well as I've mentioned for awhile now my husband and I are looking to buy a home. We have even written a nice letters hoping they will make a difference.

Here is the last one I wrote:

Hello! My name is Bonnie and my husband's name is Geoff. I was born and raised in Southern CA and graduated from UC Davis in 1990. My husband served in the Navy from 1984-1989. He went on to become an aircraft mechanic and worked his way up and is now the Director of Maintenance for Bridgeford Flying Services in Napa CA. We have two kids our son G is 14 and our daughter GA is 12.

When our son was three, he was diagnosed with autism. At that time almost no one new about autism, and we had a lot to learn. While our friends bought houses and advanced in their careers we spent all of our time, money, and energy on therapy to help him learn to talk and interact with the world. He is 14 now and doing well at BHS, we are very proud of him. In 2008 we launched National Autism Resources to help other parents affected by autism. We answer questions from parents all over the country and sell inexpensive products to help kids with autism.

We have been renting in Benicia and are excited to finally buy our first home. We hope to have a place that we can raise our kids and depending on our son’s abilities, take care of him for the long run. We will need to change a few things in the home to make it work for our family, but, we love what you have done to it. The antique furniture and wood floors are exceptionally beautiful to us.

We hope that you will consider our offer, and we hope to meet you in person soon.

Now after reading that wouldn't you want to sell to us?

Even with our nice letters we still can't seem to get a house! Two things keep happening: people with cash, come in and buy the houses cheaper than what we offer. Banks selling the homes don't want to deal with VA loans. So here we are still waiting. We put another offer in yesterday we'll see what happens!

Embracing Autism vs. Finding a Cure, and who the heck is Ari Ne'eman...

Right now there are two groups advocating for autistics, one is committed to doing all they can to find a cure (Autism Speaks, Age of Autism) the other is fighting for neurodiversity (Autistic Self-Advocacy Network). Those fighting for neurodiversity don't see autism as tragic, but as another way of being and think that those focused on a cure are rabid "curebies" who don't appreciate autistic people. Those focused on finding a cure feel the other group is crazy and counter productive.

This has all come to a head since recently Air Ne’eman, the founder of the Autistic Self-Advocacy Network, has been nominated to the National Council on Disability. Ten years ago he would have been confirmed no problem, now there is an anonymous hold on his confirmation.

Now I am being asked how I feel about Ari.

Let me begin by saying our family has done everything in our power to help my son. We've tried too many approaches to count, some worked and some were a waste of time, money and energy. My son is doing incredibly well, he no longer exhibits self injurious behavior, he is verbal, high functioning, and probably would be considered to have Aspergers at this point. One day he may be able to live on his own we don't know yet. This year he began High School fully mainstreamed without an aid. Meanwhile, last year my dear friend's son went into a group home for the safety of herself and her son.

The therapies that my friends and I fought for and lost our homes, marriages and sanity for are now considered routine, safe and effective. There is now irrefutable evidence that shows kids on the spectrum can learn if given the right tools and mode of instruction. (G did not turn into a robot after participating in ABA...) Are all kids getting all of the services they need at this point? No. Does more need to be done? Absolutely! Do we need to research why the incidences of autism are increasing, of course we do.

As we keep looking for a cause, and fighting for appropriate interventions, let's also celebrate who are kids are becoming and support them in any way possible. My son is not neurotypical and most likely never will be. I'm looking for understanding. I love my son, I love his personality, and I love the person he is becoming. He is a visual thinker who has a fascination with flight, air flow, and wing design. He's going to need extra help in life, but my desire, my passionate desire is that people will embrace him as he is, and that he will feel proud of himself.

With that said, I also say lets support the autistic adults who are now speaking for themselves. Ari Ne’eman will not stop funding for a cure or early intervention in his new position. Let’s remember the National Council on Disability, purpose is to “promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.” By opposing Ari we are blocking a passionate advocate who will fight for our children’s future rights and opportunities.

How do I feel about Ari Ne’eman? I support him.

What is enough?

My husband and I have been looking for a house, hoping to become first time home owners. Its an interesting journey with lots of talk about what we "can" afford. The question we both keep coming back to is what do we need? What is enough?

I remember when both my children were very young my husband and I lived in Hayward CA. We had one car, so I often put my children in a stroller and walked to the grocery store. One day a man was shot and killed in broad daylight right where I often walked. I prayed and asked God to please move us. About six months later, we were able to move to Concord CA.

When I moved to Concord I was thrilled with our new home. It was a two bedroom duplex in a a cul de sac. It was neat, clean and best of all safe. After a few months I was invited to dessert at another woman's house. I decided to go with a new friend from church. The next evening when I met my friend at her house I was stunned. It was so beautiful with a nice large kitchen, living room, dining room, each child had their own room and they had a garden in the back. I always wanted a house like that.

We left together for the gathering. When we got to the other woman's home I was overwhelmed. I truly had never seen a home so beautiful. It looked like it was a home right out of a magazine- the guest bathroom was larger than my kitchen. At the end of the night my friend and I left together, as she started the car she turned to me and said, "I always wanted a house like that." She continued to talk, but I can't tell you a thing she said.

Her words hit my heart, and then I felt God whisper a question to me: what happened to your gratefulness? I lost it the moment I wanted what someone else had, I lost my contentment. I am constantly bombarded with messages that what I have isn't enough, I don't look good enough, I don't do enough, I need more...

We are all bombarded with these messages.

When we listen to these messages we lose our thankfulness and become discontent.

I don't want to get caught up in the race for something bigger or better.

Oh God please give me the wisdom to make the right decision. Help me to be content with myself, my family, and all of the things you have given me. Please help me to make wise choices so that I can be generous with my time, money and talent.

"But godliness with contentment is great gain." I Timothy 6:6

Just for Fun - Win a Dilly Pack

Hi Friends just for fun you can win a Dilly pack. A few weeks ago I answered some questions on a Face Book page and won a Dilly pack. It's nice but designed for a preschool/ early elementary age child. So would you like to win it? Go to the National Autism Resources Face Book page and click on the Discussions tab. Then write one sentence about you. A couple of friends and I will check back in a week and choose the sentence we like best. Then we'll share the sentence with everyone and send out the Dilly pack.

Do any of my blog buddies want to help me judge the contest?

Chewy Tubes for Children

I thought I would write a little more about Chewy Tubes and chew toys for aggressive chewers. In a prior post I talked a little about why kids chew on their clothes. Nancy brought up another good point, and that is there could be a biological reason behind a child chewing, including pica. This wasn't the case w/ our son, but it is another thing to investigate as a parent.

I want to reiterate that I'm surprised that parents give their children animal toys to chew on. These toys don't have the same rigorous testing that products designed for people have to go through. Also, there are so many options to choose from in terms of chewing items no one should have to resort to an animal chew toy.

So to help you choose a chewy for your aggressive chewers here is a brief intro to Chewy Tubes and more...

The Chewy Tube, designed by speech pathologists, different colors represent different diameters of the chewy tube. Yellow is the thinnest and blue is the thickets tube. P's & Q's are their cheap chewy. They are latex free, non-toxic, and my son loved them.

The Grabber XT is one tough chewy. They are a lifesaver for aggressive chewers. The rounded handle makes it easy to hold. They also have textured Grabbers and regular grabbers, and they are a little bit cheaper than a chewy tube.

There is a new kid on the block called Chew Stixx. So far I haven't heard anything positive or negative about them, but they look very interesting. Because my son isn't chewing like he use to, thanks to Sensory Integration therapy, I can't give you any personal feedback. If you use them, let me know what you think!

The ChewEasy Chewy Tube. This is cool, its a chewy tube attached to a coil cord with a clip. So its easy to clip on and keep track of. A nice idea for kids who tend to loose things.

Exercise Tubing or Refrigerator Tubing, this is what therapists suggested kids chew on all the time. Now w/ the phthalates concern and latex concerns it's not considered a good option. Also, they were not designed for chewing and may or may not meet FDA guidelines.

Chewy Pencil Toppers: These fit over the end of a pencil so a child can chew while sitting in class. They are sturdy, but not reusable in that once the top goes on a pencil it stays there so you can't transfer them to another pencil. However, because they are clear they are a little less noticeable.

Now there are also chew toys, most of these you can get at K-Mart, Toys R Us, or Target:

The Hand and Foot teether: you can find these in almost any store. They are easy to hold and durable.

Knobby Teether Ball: Easy to hold with lots of knobs to chew on. It also works great as a fidget. So you get more bang for the buck.

Razbaby Razberry Teether: This is a teether not a pacifier they are sturdy and have interesting textures and they are silicon based.

The Massaging Action Teether: Great for chewing and it provides vibration for lots of oral stimulation.

Play & Grow Flutterbug: I saw this at Kohl's and it's awesome, lots of textures and it vibrates as well. It looks great for younger kids.

Anyhow I could go on and on and on! My point is there are lots of safe options out there now. I didn't even go into chewable jewelry ... I hope this helps you make a good choice for your child. If you need to buy some chewy items I hope you will visit our Autism Shop!

It's World Autism Day

Today is World Autism Day, that's great isn't it? I guess today I'm a little sad. I'm sad because I've watched the landscape of the autism community change so dramatically. I've watched Autism Speaks become the leading voice in the media, yet I am concerned about the organization.

For example, in 2008 out of $65,826,629 dollars raised, only $27,593,390 went to "grants." Another $17,756,876 went to salaries, did you know the Chief Science Officer Geri Dawson was paid $644,264 alone? You can read it for yourself here their tax forms are public knowledge. The president Mark Roithmayer was paid $365,575 (he also received another $34,838 in compensation from the organization). You can compare that to the president of the Autism Society of America Lee Grossman who was paid $183,750.

Meanwhile, we have parents walking across the world trying to raise money to help their kids. Is this the best place to funnel all of that money? When over half of the expenses go to salaries, administration costs, I have serious doubts. Did all those moms walking know over half the money they raised, $38,779,862 would go to fund Autism Speaks? I could write about what Autism Speaks is funding, but don't get me started. They are a well financed, media savvy group, but are they the best group? Should they be "speaking" for all of us? I'll tell you one thing, they don't speak for me.

April is Autism Awareness Month

April is Autism Awareness month and Tomorrow is World Autism Day. I am encouraging everyone to wear blue to try and start conversations about Autism. I hope you will join me and wear blue tomorrow! I try my best to be encouraging and I love my son, but the truth is it is a long and often difficult journey.

When my son was first diagnosed with autism no one had heard of the condition and now its a common term. What once only affected 1 in 10,000 children now is affecting conservatively 1 in 110. Many professionals and teachers are not trained in how to support and work with these kids. The professionals that do have training can't meet the demand. We need more resources for parents, teachers and researchers.

I started National Autism Resources because I had a dream of helping others. Now I am overwhelmed by the number of people contacting us from all over the world. Let's work together to help our kids!