Monthly Archives: June 2008

Autism T-Shirts

Yesterday I noticed at Café Press that there are a lot (thousands!) of great autism awareness T-shirts available. Some of my favorites can be seen by going to this link and then just clicking through the pages. “What? Is my autism showing?” is good, “Hang on, I know I have a social story for this” made me laugh, “Yes, my son has autism. No, he’s not like Rainman” is another good one, “When children cannot learn, it’s time to change the way we teach” hit home with me, as did “Parenting advice not appreciated unless you also have an autistic child.” Amen to that! I think I’ll buy that one! Wish I had it years ago!

There are so many good ones. One I really like is “got autism?” styled like the “got milk?” ads. I don’t know how Nigel would feel about wearing it, though. His favorite T-shirt has a silhouette of Bigfoot on it and says “I believe” across the bottom. He proudly wears it everywhere.

And then I saw a T-shirt that read “Autistic and proud” and I got chills and a lump in my throat. Nigel would probably feel self-conscious about wearing it. But I think the reason why it resonated with me is because I’m so proud of him. Yes, there are plenty of T-shirts that read “I’m proud of my autistic son/daughter/brother/sister/grandchild/etc.” on them. And those are great. But ultimately, I want my son to be proud of himself and all that he has accomplished: wanting to communicate, learning to talk, which was so difficult for him, figuring out how to filter his sensory issues (equally difficult), learning about all the social expectations of this NT world and dealing with its ignorance. But even if he hadn’t done all of that, I would still want him to be proud of his unique, amazing self. All auties should be “Autistic and proud.” I salute every one of them.

Bitterness

Over the weekend, I did some looking around online at autism sites written by “auties.” (I’m still getting used to that word, which is why I put it in quotations. It took me eight years to come to terms with using the word “autistic,” so “autie” will sound different to me for a while.) I was sad to see that many of them are quite bitter. I can’t say that I blame them, because with the harassment and ignorance that Nigel has dealt with, I’m sure there are plenty of other auties who have experienced the same treatment. And as they head into adulthood, that’s a lot of accumulated years of negative exchanges.   

I found a bumper sticker that says: “Cure Neurotypicals now!” And in smaller print below: “Offended? Good. Now you know how we feel.” Meant to be funny, I presume, with an ounce (at least) of seriousness. But some of the web sites I viewed over the weekend seemed just plain angry. I want to tell the authors something, with all my heart.

 I’m sorry for how you’ve been treated. You have every right to be angry. But holding on to that anger will only make you feel worse. Remaining angry will not alleviate the anger. Remaining angry will not punish the people who hurt you. Remaining angry will only hurt you. Please, for your emotional well-being, channel your anger into something positive, like creating an online support group for others who have experienced the same thing. You will know you are not alone, and you’ll feel at least a little better.

Nigel gets angry about bullies. Most likely, as he gets older he will experience more bullying and more ignorance. I don’t like thinking about what he has gone through, what he will continue to face, how things will be for him in high school, possibly college, a future workplace, and the general community. I hope that I’ve given him a strong enough base of love and self-worth that he can successfully let go of his anger and not allow it to consume him.

I don’t want Nigel to feel bitter when he’s an adult. I want him to feel cherished, appreciated for who he is, and important. I want him to feel loved.

The Autism Fairy

I found out an amazing coincidence yesterday. I ran into an acquaintance of mine from a couple of years ago, and we started talking about our sons, since we remembered that we both have sons of approximately the same age. It turns out that his son and Nigel were born on the exact same day, same year, same hospital, within two hours and fifty minutes of each other. Bizarre. I thought, aside from the autism, they must be a lot alike.

And that got me thinking. Out of the seven or so babies born in that place at that time, we were visited by the Autism Fairy. The luck of the draw. But I don’t think that in a Why us? sort of way. There are times, like when I was at work and the school would call me about a behavioral problem, and when I was at the movie theater and the manager and Nigel came to me in the middle of the movie, that I think Why me? at that moment, because I am stressed. But my big-picture thought process is more accepting.

I’ve heard it said that God, or the Universe, won’t give you anything more than you can handle. And if I had a dollar for every time I cried, “I can’t handle this!” I could easily buy myself a nice case of wine. But you do what you have to, you get through it, and, ultimately, you handle it. Maybe not optimally. But you do the best you can.

Because I believe that we were chosen to have autism be a part of our life’s journey. We are a special needs family. And the Autism Fairy visited the right room in the hospital that day. I’m sure of that.

7 Dietary Changes to Try

It can be extremely difficult to regulate your autistic child’s diet. I know that song and dance all too well. But it is something we parents must attempt. Diet – what we put into our bodies – affects our health even more than most of us realize, and this is certainly true for autistic individuals, as evidenced by the success of the GF/CF diet. But since we did not have a successful experience with that, I have modified Nigel’s diet over the years to one that seems to work the best for him. Following are seven suggestions for diet modification:

1) Try the GF/CF diet. It might benefit your child. Be sure to maintain consistency with it for several weeks to accurately gauge its effectiveness.

2) Limit sweeteners, especially artificial ones. Nigel is okay with the occasional bit of natural sugar that crosses his path, even a little corn syrup now and then, but he absolutely cannot have any artificial sweeteners. He becomes completely agitated and unmanageable, reverts to echolalia, and general chaos ensues. That means mainstream sodas (Coke, Pepsi, etc.) are out, but once in a while I allow him to have some even though I regret it later. He is particularly sensitive to Aspartame, which I’ve read many bad things about on the internet.

3) Limit other chemicals: artificial colors, flavors, and preservatives. I’ve read that the Red No.-whatever colors are the worst, but the rest can’t be far behind. We frequent the natural foods section of various grocery stores and buy all of our cereals and snacks there. No Trix or rainbow-colored goldfish crackers!

4) Try organic food. Yes, there’s been a lot of debate about if it’s worth the extra cost or if the money’s all in the organic labeling. That may be true in some cases, but know this: In the past two years since I started buying organic food, and not everything – just about one-third of the food we consume is organic – I have only been sick once and it was extremely mild. Both of my sons have only been sick twice. Twice, in two whole years! And those were also mild illnesses. For kids, that’s pretty amazing. I am sold on organic foods no matter what I read or what anyone says. They are so much better for your health. They automatically exclude artificial colors, flavors, sweeteners, and preservatives. And pesticides! And they taste far better, too.  I think I’ll write a whole post about organic food.

5) Push fruit. Fruit aids the digestive system and is full of vitamins. Of course, consuming vegetables is just as important, but if your child balks at most vegetables (like mine), you may have better luck with fruit since it is sweeter.

6) Encourage water consumption. This will be very difficult if your child acts like water is poison. My younger son used to fall into that category. I was able to get him to drink more water by bargaining with him with what he wanted: If you drink half a glass of water, then you can have a glass of lemonade.

7) Limit meat consumption. Meat is more difficult to digest, so I cook with smaller amounts and on fewer days of the week. You don’t have to cut something out completely to see the benefits of scaling back.

Conversations With Nigel

Usually, my sons go to LA to visit their dad for two weeks in March for Spring Break, but this year their dad came up to Oregon to visit them. So I have not had an actual phone conversation with Nigel, other than “the-scout-meeting’s-over-come-pick-me-up,” since last July. In the past two weeks I have been reminded of what that’s like.

As with most of his conversations, phone or not, if Nigel’s not speaking about an Obsession of the Week, I have to drag any information out of him. He will rarely volunteer information unless it’s regarding something of interest to him, some piece of trivia about Back to the Future, natural disasters, ancient civilizations, or an explanation of his latest Lego creation, for example. He could never be accused of “B.S-ing” about something he did not know, and I doubt that will ever change.

But when I haven’t seen him for weeks, I want to hear more about how he’s been, what he’s been doing. And those are often difficult topics for him to discuss, especially if a TV is distracting him. I know this, it has always been this way, and so I am patient.

Me: So what did you do over the weekend?

Nigel: [silence]

Me: Did you go to the beach?

Nigel: [silence]

Me: Nigel? Did you go to the beach over the weekend?

Nigel: Yes.

Me: Which beach did you go to?

Nigel: I don’t know.

Me: Did you visit anyone?

Nigel: [silence]

Me: Nigel?

Nigel: [silence]

Me: Nigel, is the TV on?

Nigel: Yes.

Me: What are you watching?

Nigel: [silence]

Me: What are you watching on TV?

Nigel: The Lost Pyramid.

Me: Is it on the History Channel or Discovery?

Nigel: [silence]

Me: Is it on the History Channel or Discovery?

Nigel: History.

Me: Okay, well, I love you.

Nigel: I love you, too, bye.

Relieved, I’m sure, he hangs up. He knows I love you is the last thing we say on the phone. And I am always so glad I can hear him say it.

A Great First Day

I talked to my boys last night! Of course I love to talk to them anyway when they’re in LA, because I miss them, but last night I was excited to hear about Nigel’s first day at the Village Glen Day Camp. It sounds like he had a great day! I asked him if he met any kids his age and he mentioned three boys that he had met, with their names and ages. One of them is also thirteen, which made me so happy for Nigel, since the NT kids his age are socially more mature than he is. I’m so glad that he met someone his age who is also at his developmental level, someone he can just be himself with.

Next I asked him what they did at the day camp. In his typical flat, but beautiful, voice he told me how they “played inside games because it was hot outside.” Also typical is having to drag information out of him if he is talking about anything other than an OW.

Me: What kinds of inside games?

Nigel: Charades and board games.

Me: Which board games?

Nigel: Clue and Battleship and Jenga.

I wanted to ask how he did with Charades, but I figured he wouldn’t know how to answer that. Instead, I smiled, visualizing him playing with his three new friends.

Me: Did you like your first day?

Nigel: Yes, I had a good time.

A huge thank you to Alexis and Niika for making this possible!

Nigel’s Opportunity

When I recently wrote about my sons going to visit their father in Los Angeles for several weeks, I mentioned that one of the good things about that is that they can do things in LA that they wouldn’t be able to do in southern Oregon. Tomorrow Nigel will start attending a summer day camp program that is specifically designed for high-functioning autistic (and Asperger) kids. Nigel is so excited about “meeting kids like me!” He had to do a phone interview last month with the program’s coordinator to make sure that his level of functioning would be compatible with the group, and it sounded like he did fine.

I am so grateful to my brother and sister-in-law, Alexis and Niika, who live in southern California, for researching this program and offering this time to Nigel as a gift. I appreciate their generosity and this opportunity that they have provided for Nigel. He has long been looking forward to becoming friends with kids who will “understand my differences,” as he puts it.  He is probably also hoping to meet a friend who will share his enthusiasm for planning an Oregon Trail trip or will help him to Rube-Goldberg the house! I just hope he has fun and enjoys doing what he loves so much: hanging out with his peers, feeling like he belongs.

Long-Distance Obsession

The last time I talked to my sons, who are visiting their father in Los Angeles, I was excited to tell them about my Mt. Shasta climb, but Nigel was more interested in telling me about his OW (Obsession of the Week): Clovis people. Clovis culture is a prehistoric Paleoindian culture of North America at the end of the last ice age, about 13,000 years ago. I can tell he is rabid about it. He could talk of nothing but the obsidian spear head that he plans to make, using rocks to sharpen it, as the Clovis people did. Then he will lash it securely to the ‘spear.’ The obsidian he says he will obtain from the desert in southern California the next time his dad takes him camping; I don’t know what he plans to use for the spear. This should be interesting . . .

But it gladdened my heart to hear Nigel so wrapped up in his OW. That tells me that he is adapting to his new environment, comfortable and secure enough to let his obsessions occupy him, rather than watching videos all day and exhibiting echolalia. The best part about his obsessions is that they cause him to use a ton of spontaneous speech, and that’s something I always love to hear.

Music for Healing & Meditation

This time of year, when my sons are visiting their father for several weeks and I am alone, I spend a lot more time listening to music. I also try to spend some time meditating, and if I have music that helps me to get into a meditative state of mind, that’s what I’ll be playing.

Steven Halpern’s Inner Peace Music offers many titles in that category, as well as other categories such as healing, relaxation, and learning. Steven Halpern has been in the New Age music industry for decades and has produced dozens of beneficial titles to aid in these areas and more. Our family listens to several of his albums.

I am a long-time fan of Chakra Suite, a bestselling CD that never fails to put me in a meditative, relaxed mood. New Age Voice Magazine calls CHAKRA SUITE “…The most influential New Age / Healing Album of all time.” The music on this CD is tonal in composition, without distracting chords and melodies, and is designed to balance the chakras. This creates an ideal atmosphere for meditation, relaxation, and healing. It helps immensely with the reduction of the stress that accompanies being an autism parent.

I also love Music for Sound Healing, a CD that I play for relaxing background music. The album features grand piano, electric piano, flute, and harp, and includes Halpern’s arrangement of Pachelbel’s Canon in D Major. All thirteen of the soothing compositions provide a beneficial, healing environment.

Nigel loves the relaxing sounds of Peace of Mind. He says that it works the best to help him sleep, and he listens to it on a regular basis. The richness of Halpern’s solo grand piano is exquisitely graceful. Aidan receives the most benefit from Sleep Soundly, with subliminal messages to instruct the listener to clear his or her mind and drift into peaceful slumber. Our household has been sleeping much better since we started listening to this wonderful music!

In addition to the titles for healing, meditation, and relaxation, Steven Halpern offers a line of subliminal self-help CDs, rhythmic world beat selections, music for yoga, music for learning, and several spoken-word meditations. Steven Halpern’s music rounds out a holistic approach to in-home therapy for stress relief, sleep problems, and other areas affecting many families today, especially those with autism. I highly recommend this beneficial music.

More Buddha Wisdom

“Doubt everything. Find your own light.” –Buddha

This is pretty much the flip-side of yesterday’s post. I just found it today and I thought, Yes! Buddha’s all right! This quote is my new credo.

After all, isn’t that what we parents of autistic children do? Every day? We find our own light. We forge our own path.  We don’t take anything for granted.

And that “doubt everything” part. That’s just the ancient version of “question authority.” Good to know that Buddha sanctioned it a couple of millennia ago. Maybe there is something to this Enlightenment idea.