Finding My Keep

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

100_1034

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.

An Easier Interview

In case you haven’t had your fill of me yet, I’ve been featured in another interview. This one was far more enjoyable for me than my TV appearance! Deborah at 5 Minutes for Special Needs was kind enough to ask me a few thought-provoking questions, and I was only too happy to answer them, especially since I wasn’t being filmed! So if you’d care to mosey on over, check out my interview with 5 Minutes for Special Needs, and check out the site while you’re there, if you haven’t already. It’s a great resource for fun and practical ideas and inspirational stories. Thank you, Deborah!

If I Blogged 5 Years Ago

Yesterday, on my way home after picking up the boys from the 700-Mile Kid Swap, I thought about what it was like when we first started doing it seven years ago. I thought about how Aidan used to throw up in the car at least every hour and how Nigel, newly verbal and still figuring out syntax and pronouns, would ask, “Why you throw up?” So I thought I’d do a follow up to my previous post on this topic.

If I blogged five years ago, Nigel would have been nine and Aidan would have been seven. I would have written about how hectic it was to have two children having IEPs with one parent to attend them (and trying to find childcare beforehand). I would write about how Nigel, who had taught himself to read at age three, before he could talk, was now reading at a middle school level and could comprehend 90% of it. Conversely, I would write about how Aidan still couldn’t read, even though I’d read to him every single night of his life and had tried to teach him for years, and so I had him in a special reading program at his school in addition to his speech therapy.

Five years ago, I would have blogged about emerging Nigelisms like this:

The Scene: Interior suburban family home. Two young brothers are seated at the dinner table while their mother serves them their plates of food. For the first time, the children are having full-size turkey burgers, as opposed to their usual half-size, so their mother placed them on buns instead of regular bread, as she had previously done. Due to their limited acceptance of foods, she wonders if they will refuse the buns.

Younger brother, about age 5: Mom, what is this fred?

Mother: It’s a bun.

Younger brother: There are bun freds?

Older brother, about age 7: Not ‘freds.’ BREADS. Not an F, a B.

Nigel, as soon as he learned to talk, loved to correct Aidan, who had pronunciation issues. But one thing that surprised me a little was that Nigel seemed to want me to correct him (Nigel). If he misused a pronoun, I would gently correct him, and then he would repeat what he’d said and insert the correction, as if memorizing it. It took about four years for him to learn to use pronouns, articles, prepositions, word order, and verb tenses correctly. He put so much effort into learning to talk. It always touched me how receptive he was to my gentle corrections. It was always the same – he would quietly repeat what he’d said and insert the correction, then move on. This happened several times a day for a period of about four years. Having studied French for several years while in school, I recognized the process of learning a foreign language. And that was how Nigel learned to speak English – like it was a foreign language.

If I blogged five years ago, I would write about how I ventured back into the realm of grocery stores and the occasional restaurant with Nigel. Salon haircuts were possible for the first time with ear plugs. He was finally starting to filter out all the sounds that had been unbearable to him before. It was liberating for both of us. I would also write about my first published magazine article, “Autism on the Rise,” which was featured in a regional parenting magazine. I would sadly and angrily blog about the first time I heard Nigel being called a retard, and how I ran outside and yelled at the boy who said it.

Five years ago, I would write about Nigel’s incredible third grade teacher, the man who happily volunteered to take on a newly mainstreamed autistic boy, one who had struggled notably the previous school year, even with a full-time aide. Mr. Incredible welcomed Nigel, provided the structure he needed, patiently included him and encouraged his other students to do the same. He made Nigel feel so comfortable that, for the first time ever (away from home), Nigel removed the snug-fitting hood of his jacket when Mr. Incredible suggested it to him in the classroom one afternoon, after six months in his class. And Mr. Incredible was just as excited about it as I was. He still, five years later, inquires about how Nigel is doing.

Incidentally, Mr. Incredible was also Aidan’s third grade teacher. By the end of that year, Aidan was reading. And now, just three years later, he’s reading at a high school level. Five years ago, I would have never thought that would be possible. That and so many other amazing things. New issues have certainly come up in the past five years – bullying, homeschooling, behavioral problems, medication, etc. – but the fact is that both of my boys continue to improve. Hope abounds.

Someone’s Listening

Too often, we feel like we’re talking ourselves blue as we try to advocate for our special needs children. It feels like no one’s paying attention, like the only people who care are the ones who are in the same shoes. It doesn’t seem like anyone who could really make a difference is taking notice. Well, someone finally did.

I got home from work yesterday and showered, getting ready to go see a movie with a friend. As I was preparing a quick dinner for myself, the phone rang. I answered, and it was someone from our local news station requesting to come and interview me (!) about “the new Oregon Commission on Autism Spectrum Disorder that was created by the Governor today” (!) “Wow,” I said, grasping for a semi-intelligent response since a) I hadn’t managed to catch any news yet and had not heard about the Commission, b) they’d probably gotten my contact info from the Autism Society of Oregon since I’m a Chapter Rep, and I didn’t want to sound completely ignorant, and c) I’d never been interviewed by the news before. (!) To be on TV. (!) At least I had already showered.

After we set up a time to do the interview, I ran around cleaning the living room, of course. Then I did a quick search to get some info on the Commission and our illustrious Governor here in the beautiful state of Oregon, which yielded the following:

Governor Creates Commission on Autism Spectrum Disorder

(Salem) – Today Governor Ted Kulongoski signed Executive Order 09-07, creating the Oregon Commission on Autism Spectrum Disorder (ASD). The commission is charged with creating greater coordination and planning to better engage and provide services for individuals experiencing ASD and their families.

“Oregon, like other states, has seen a dramatic increase in the number of children diagnosed with Autism Spectrum Disorder,” Governor Kulongoski said. “This commission is an important first step in ensuring that individuals experiencing ASD and their families receive the services they need to face the challenges that come with the disorder.”

Across Oregon, services to people experiencing ASD have been fragmented and inconsistent, resulting in poor coordination with the various agencies and entities that provide services. The commission will make recommendations to increase coordination and collaboration through the identification of policies and strategies that will improve interagency agreements and address funding issues . . . “This commission will help make sure Oregon is incorporating all of the best information available on autism in treating and supporting those experiencing ASD,” Governor Kulongoski said. “The commission will also ensure we are getting the maximum benefit from local, state and federal resources.”

And then came my 15 Minutes! (Um, more like 15 seconds.) Unfortunately, I’m unable to embed the video right here on this site, so you’ll have to click on this link to view the two-minute news feature that aired in southern Oregon last night. They put me on twice! Not bad for an introvert, eh?

Comfort Zones

I’ve never been called a social butterfly. Not even close. I am a happy introvert. My Facebook “About Me” section says:  I have two sons, one autistic, one not. Both are more social than I am. So I started blogging.

But long before I started blogging, I noticed something happening that I wasn’t too comfortable with. Nigel’s diagnosis threw me into frequent meetings with various therapists, teachers, doctors, and other people. Then Aidan’s special needs became apparent, and I had to deal with even more therapists, more people. As my sons learned to talk, I noticed that they were not introverts. One got interested in Scouting (actually both did, at first), and the other one went to a lot of friends’ houses. I met the friends’ parents. I met the Scouting parents. Some of them even became my friends.  As the years went by, I met more teachers and therapists and other parents. The fact is that both of my kids, especially my autistic one, have gotten me out of my comfort zone. And I discovered wonderful people – and a side of myself – that I might never have known.

Even so, when I have to go to a meeting or call someone I don’t know, I still step outside my comfort zone on a weekly basis. But people with autism, whether introverted or extroverted, have to get outside of their comfort zones every day. Nigel, with his fear of bees and other flying insects, gets outside of his comfort zone every time he steps outside. He gets outside of his comfort zone every time he enters a public restroom and wonders if there’s an air hand dryer on the wall, and if someone will use it while he’s in there. He is outside of his comfort zone whenever a baby begins to cry or an alarm goes off or a light is too bright. How many times a day does he step outside of his comfort zone?

I attended a dinner party tonight, and I only knew one person there, someone I hadn’t seen for almost four years. I was definitely outside of my comfort zone. It’s not that I’m shy, it’s just that it takes a lot of energy for me to pull that off, to push myself to be social. But I’ve been doing a lot more of that in recent years, and you know what? I laughed and broke bread with these lovely people, and I talked about autism and homeschooling and my job and places I’ve traveled, and I really enjoyed myself. In fact, at some point during the evening it dawned on me that I couldn’t be out of my comfort zone because, well, I was comfortable. I really was.

It’s hard to get out of our comfort zones, whether we’re autistic or just introverted (or in some cases, both). But I think if we do it enough times, our comfort zones evolve. Nigel is now comfortable in grocery stores and restaurants, places that used to cause him such agony. He likes these places and asks to go to them. The last time we went to a movie theater, he didn’t even need to use ear plugs. Some comfort zones may always be difficult to step out of, regardless of how much we try. But others, with time and patient attempts, can change. It’s good to stretch ourselves, whether we’re conscious of it or not. We stretch a little bit, and our spirits are encouraged to keep going, keep stretching. The rewards are too great to miss out on.

Suspended Reality

I sit in my quiet house watching snow falling on branches of trees that had already started blooming again. But the really unusual part of that sentence is that one word – “quiet.” That’s right – my sons are not home this week.

They visit their father in LA for several weeks every summer, as well as Spring Break and Christmas. I’ve mentioned The 700-Mile Kid Swap before, as well as what happened the last time we did it. But this time was by far the most beautiful (scenery-wise). We took a little detour into north-central California to meet up with their dad at a different spot, since he wanted to take the boys to visit his mother for a few days. And the drive there was simply incredible. At one point we drove through seven miles of orchards. Yes – seven miles of orchards one right after another! And through the trees we could see views of beautiful Mt. Lassen, which Nigel and I climbed last summer. Nigel liked seeing Mt. Lassen, but Aidan was enamored with the orchards. “I would love to live here,” he said in a dreamy voice.

So now they are away this week, and my home is quiet. And I have tons of things to do to fill that time, but I feel like I’m missing an arm and a leg with the boys gone, and it’s hard to get anything done that way. I don’t feel like myself when they’re not here. I’m living in a suspended reality.

I sometimes wonder if that’s what life is like for Nigel – he has his way of viewing the world, and a lot of it is very different from how others view it. And I especially wonder how it is for him being on Risperidone. He is calmer, yes, and can regulate his behavior a bit better, but he is not himself. It is a subdued version of him, a suspended reality.  His eyes – and his demeanor – are different. I know – this was what we wanted. He wanted it, too. We wanted the change in behavior. But I didn’t know there would be a change in him, in his countenance.  

Again I remind myself that he doesn’t need to be on it forever – just a couple of years, I hope, until he learns to regulate his behavior himself. And eventually he will, of that I am sure. He says he can feel the difference in himself, and he is satisfied with the results, which is most important. But I’m looking forward to the day when he no longer needs to take it, and I can have the real Nigel back. For now, though, I know that I’ll still enjoy the company of the modified Nigel. He may not appear to be himself right now, but he’s still unequivocally Nigel.  And I’ll smile as I think of him at the sunny beach this week, while I watch the snow fall.