Monthly Archives: April 2009

Finding My Keep

Please note, this originally appeared as a guest post on a blog that is no longer available.

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Remember what was said when we were kids and a friend gave us something? “You can have it for keeps.” And it meant that we didn’t have to give it back. “Keep” is a word with many different meanings. We hear various phrases: “Keep up the good work!” or “Keep in touch!” or “Earn your keep!” and “Finders keepers!” It means “to maintain possession of,” “to continue, perform, observe, fulfill,” “to preserve and care for,” “board and lodging,” “to hold,” and “to endure.”

But a keep is also the stronghold of a castle, a fortress. The keep is the most resilient part. It’s what holds everything together during an attack. And in each of us, it’s what helps us to endure the rough patches of our lives. Whether we have special needs children or are recovering from an addiction or have lost a loved one, we need to find our inner keep to see us through. For many, it’s God, for others, it’s their health, their goals, their home, or their family. It can be all of the above, or something entirely different. 

As the single parent of two sons, one with autism, I discovered my inner keep a few years ago. It is my energy. I’m not really referring to physical energy, although that certainly helps. I’m talking about mental energy, emotional energy, and spiritual energy. I learned that if I didn’t nourish my mind, my heart, and my spirit as well as my body, there would be no way that I could nourish my children. I learned this because I used to have co-workers and acquaintances say to me, “You’re so strong.” And I knew that they meant well, of course, but little did they know that those words – meant to encourage – would only succeed in making me want to break down and cry. I was going through the motions, doing what I had to do to get through my stressful life. “Strong” was the last thing I felt like. I felt like a piece of burned paper that would crumble to ashes at the slightest touch. I felt entirely the opposite of how I appeared to be. A hug from a friend would make me fall apart. I hadn’t found my keep. I didn’t know I needed to.

Slowly it became clear to me what I needed to feel stronger, to make the façade a reality. I started by taking care of my physical self – getting more sleep as the boys got older, eating healthier food and taking vitamins, and doing a little yoga at home. Soon, not only did my body feel better, my spirit did, too. The yoga helped to quiet my mind, which led to trying different types of meditation. The meditation led to the realization that I had isolated myself and needed to correct that in order to nourish my emotional energy. It was a wonderful domino effect. And all of it combined to help me feel whole – and stronger. Now when people tell me that I’m strong, I don’t feel like crying. My life certainly still feels stressful on any given day, but I don’t feel like I’m barely hanging on.

No matter what you’re going through, I encourage you to find your keep. Find what strengthens you and nourish it, whether it’s your faith, your family, or your frame of mind. Whatever it is, it’s for keeps.

A Soothing Routine

We’re all well aware of the importance – nay, the necessity – of routines for people on the spectrum. Some of them can be quite involved, restrictive, and difficult to follow on a daily basis, while some aren’t quite so limiting. All of them serve a purpose for the autistic person: to establish order, a little predictability in an unpredictable world. They don’t know what kids at school will say to them from one minute to the next, or if an insect will fly near them at any given time, or if a sudden loud sound will torment them in the grocery store, or if they have to go somewhere unfamiliar. But they do know that when they get home, they can somersault down the hallway, they can eat their snacks in the exact order that they choose, and they can watch a movie they’ve seen dozens of times and repeat all the lines while they watch it. And the stress of the day will be lifted.

So, as we can see, routines are also calming. That’s why one of the most important routines of all is the bedtime routine. For many, it involves bathing, a snack, reading a book, setting out clothes and preparing a sack lunch for the next day, brushing teeth, etc. Nigel does most of those things, but his favorite part of the evening ritual is listening to Music to Relax.

Every night we play it while he is getting ready for bed in his room. We turn on a softer light, we turn off the computer and TV, and the soothing classical music of this wonderful CD helps Nigel to slow his mind down and prepare for a restful night’s sleep. I tell you, it’s amazing. Nigel has listened to other CDs designed to be listened to while going to sleep, and they were quite helpful for a time. But the important difference is listening to Music to Relax for a half an hour before he even climbs into bed. Then he listens to the rest of the CD after I come and say goodnight to him and indulge him in his quick sunglasses ritual. And then he falls asleep quicker than he ever has before.

This is the second Advanced Brain Technologies CD that I’ve tried and reviewed, and I am once again thoroughly impressed with the results. To recommend them is an understatement – I implore you to try these CDs! They are truly beneficial.

April Announcements

I’ve been contacted by a few companies/organizations that would like to get the word out on Autism Awareness Month happenings, so I thought I would post a notice about them to let everyone know.

First up is TRP Wellness! This company features DVDs on OT/sensory issues and yoga instruction for special needs children, a section with tips and resources, a blog, and a newsletter. From now until April 30, in honor of Autism Awareness Month, their OT/sensory issues DVD series is on sale at 20% off! Just enter the code “April2009” at checkout.

Next, Autism One would like to announce that May 20-24 they will host the “Change Has Come” conference in Chicago, Illinois. This conference is a great opportunity to learn more about what you can do to immediately start helping your child, confidently and economically navigate the medical intervention terrain, learn how to talk to your pediatrician to get the tests your child needs, and meet other parents. Click here for details.

Lastly, be sure to check out all the events that your local chapter of the Autism Society of America has planned for Autism Awareness Month. For instance, here in Oregon, the Autism Society of Oregon is hosting the “Take a Break on ASO” program, which gives gift cards for dinner out and a movie, with reimbursement for 4 hours of respite care! They also have many other activities planned for the month. If you’re not sure of your state’s website (some states have more than one chapter), go here to see a listing of contact information for each state. Have a great April!

Getting to Know an Autistic Teen

I got some funny searches this week: “100 count a Kindergarten,” “living in a car,” “angel of doom,” and “how to sew a wolf head.” But my favorite search this week was not, I presume, intended to be funny. And I want to give a big hug to the person who typed it in.

how to get to know an autistic teen

Wow! Doesn’t that renew your faith in humanity? Whoever you are, can we clone you? If more people wanted to get to know autistic teens, if more people realized that they have feelings and interests and personalities worth knowing and cared enough to find out how to achieve that, our kids would be a lot happier and so would we. And more people’s lives would be enhanced by knowing them. Because, verbal or not, they have a lot to offer.

So, how do you get to know an autistic teen? Your approach should depend somewhat on the teen’s communication ability. If you’re wanting to get to know a non-verbal autistic teen, your best bet is to contact the parents or caregiver first to find out what you can about the teen: likes, dislikes, things that might upset them. They might communicate with PECS or writing, or some other method. The important thing to remember is that, regardless of how they communicate, their receptive communication is usually much greater than their expressive, and autistic teens understand a lot more than people realize.

The following is a list of guidelines for getting to know an autistic teen:

  • Find out their interests, which may or may not include computers, Lego, science, history, movies, superheroes, movies about superheroes, Star Wars, Indiana Jones, etc. (Fellow parents, feel free to add to this list of interests in the comments!)
  • Don’t expect eye contact, handshakes, or hugs. At least not for a long time, in most cases.
  • Don’t use figures of speech, which tend to be confusing for literal-minded autistic teens.
  • Do expect many verbal autistic teens to speak in a monotone voice – it doesn’t mean they aren’t interested or are being rude. This type of voice is just a common trait of autistic teens.
  • Don’t expect terms of politeness. Autistic teens often forget to say thank you when you give them something, whether it’s a compliment or a gift or a piece of gum. If you ask “How are you?” they might say “Fine” but not reciprocate by asking the same of you. Conversational niceties are difficult for autistic teens to remember because most do not understand the purpose. Many try to remember to say them anyway.
  • Do be patient. Sometimes it takes a moment for the autistic teen to formulate a response.
  • Don’t expect them to talk for long periods of time in a conversational manner. You know how when someone trips a little, a friend might jokingly say, “Been walking long?” Well, some autistic teens haven’t been “talking long.” Mastering the art of conversation is something that many of them are still working on, and will continue to. They might likely end the conversation by bluntly saying, “I’m done talking now. Bye.” Again, they don’t mean to be rude. Don’t take it personally.
  • Do be aware, especially if talking outside, that autistic teens may react wildly to an insect that flies near them or to a sound that startles them or a sudden bright light in their eyes. Just accept that it’s part of who they are, and know that they can’t help it and they deal with it as best as they can.
  • Don’t feel slighted if you say hi to them in passing and they don’t respond. They’re so busy filtering all the sensory input of wherever they are and trying to organize their brain that a passing hello often won’t register until after you’ve passed them. Again, don’t take it personally. Really – they cannot help it. Many autistic teens also contend with face-blindness.
  • Do realize that even though an autistic teen may not show many facial expressions while interacting, most of them still want friends, and all of them have feelings. They probably really appreciate that you’re taking the time to get to know them and understand them, but they don’t know how to tell you that. Be persistent but respectful. They are worth it! And so are you. Take it from a parent of an autistic teen – we appreciate you more than words can say.

Doing More

Advocacy is important to me – it’s part of why I blog. I also want to teach my kids that we’re here to help each other out. I encouraged Nigel to participate in a Habitat for Humanity walk last year, he does Scouting for Food with Boy Scouts, and he and Aidan often go with me to donate to local charities. In that vein, promoting autism awareness comes naturally to me.

My good friend and fellow blogger, Jenn at Devin’s Journey, wrote a few days ago about today being World Autism Awareness Day. I love the thought of that, seeing as autism knows no political borders. Not only did Jenn remind us of the day, she asked what we were doing for it. Aside from my ongoing campaign to eradicate the r-word from my workplace, I thought of more that I could do.

First of all, I’m doing something close to home, because there is still so much that needs to be accomplished right in our own backyard. So today I’m going to email the principal at Nigel’s school and restart my wheel-squeaking about implementing a Circle of Friends program there. I had sent the principal a link to the ABC News autism page, which features a video that discusses ASD and bullying, and how beneficial the Circle of Friends-type of program has been for the school in the video. I sent the link in an email almost three weeks ago and haven’t heard back yet, so it’s time for some serious squeaking.

I also think that today is the perfect occasion to announce my plans for this summer. I have posted previously about Knowledge for People, a non-profit dedicated to autism education and outreach for developing countries. In July, they are going to Nepal, and I am thrilled to be joining them (!) as a parent liaison and sensory issues presenter. It’s one of those “opportunity knocks” situations – my boys are with their dad in July, I’ve always wanted to go to Nepal, and things just came together, as they so often do when something just feels right. I am so excited to be doing this! Not only to have the opportunity to go to Nepal, but to have the opportunity to help others understand autism and learn how they can help their children in a place where knowledge and resources are so limited. With all the hurdles we face here in the US with getting services for our children, at least the services exist, at least people have heard of autism. At least we can do something for our kids. All parents – everywhere – should be so fortunate.

It’s a done deal, folks. I’ve got my tickets, my backpack, and my spirit of adventure. Just doing my part for World Autism Awareness, one country at a time.