Look, Ma – No Hands

The day starts off as such a beautiful, clear day – sunny and almost warm. I decide to ask Nigel to accompany me to the grocery store to pick out a different cereal in addition to what he usually has every morning. He agrees. We walk in the store, side by side, and head over to the organic produce section. “Where are the coconuts?” he asks. I tell him that they are probably in the regular fruit section and point him in the general direction.

He walks over by himself, and I watch. Not because I think I need to, but because, once again, I marvel at his ability to filter all the sensory input that used to be agonizing for him. The luxury of this – to me – never wears off. The sheer joy of it. It is comforting to see that he is happy, not distressed in the least. His gait is confident, purposeful. I look down and pick out some broccoli. In a moment I look up and see Nigel, fifty feet away from me, across produce stands and people and carts, and he is standing there looking at me, a big smile on his face – eye contact, even. He has found the coconuts. I smile at him, too, for so many reasons. He comes back over to me and asks if he can have a coconut so that he can make a replacement for one of his shell-cloppers from Monty Python and the Holy Grail. He likes to clip-clop his way through the house, acting out scenes from the movie. He made a pair of cloppers about a year ago, and one broke. Of course I will let him get a new coconut, but I ask how much they cost because I want him to be aware of things like that. He briskly walks back over to check. “Two dollars,” he says. “Is that okay?”  Sometimes he is so cute. I assure him that it’s fine, then suggest he go pick out his cereal. He returns a moment later with his completely appropriate, healthy choice (no, I’m not being sarcastic – he has learned not to bother asking for anything with refined sugar, after years of being turned down). He then asks if he can look at toys – not to buy, he assures me, just look. I tell him okay, but be back in five minutes.

He returns as I am unloading my cart at the check stand, exactly five minutes later, brandishing a small Lego kit that he has somehow not yet acquired. He tries to bargain. “I’ll have this instead of the coconut,” he says as he picks up the coconut to return it. I gently remind him that he promised he was only going to look at the toys and not buy any. A blank look crosses his face as he remembers. “But it has a crystal wand,” he says in a small voice. “Maybe some other time,” I say. “We’re not getting toys today.” He reluctantly says okay and goes to put the Lego back. And as I finish unloading my groceries, I marvel yet again at this child who has come so far, who, as a teen, is doing little things on his own. “Look, Ma – no hands” for us translates to “Look, Ma – no sensory issues.”  Or, “Look, Ma – no meltdown.” Of course, he doesn’t say that, but I’m thinking it. And his sensory issues are far from gone; he has just learned to filter them and cope with them. He still needs earplugs in movie theaters and often covers his ears, is a very picky eater, and exhibits some sensitivity to light and touch, but overall he does quite well now. He also knows when he needs to diplomatically settle for a coconut over Lego, and maybe, deep down he appreciates the subtle reminder that that was what he wanted in the first place.

We walk out to the car and the weather has drastically changed in the half hour that we had been in the store. The sky is dark gray and the snow is blowing at us horizontally.  “It’s snowing!” Nigel exclaims with perfect inflection. We hurry out to the car and he stands by his door, waiting to be let in. I ask him to help me load the groceries and he complies. As I put in the last bag, I hope for a second that he has thought to put the empty cart in the stall without me asking him to, but he is back waiting to get in his door, and the cart is still next to me. There will be other teachable moments, when the sun is shining.

I put the cart away and run back to the car. We get in and Nigel pulls the coconut out from underneath his jacket. “At least I protected the coconut from this climate,” he says. I tell him that it looks like a perfect one for his project. I look at the windshield wipers flicking away the snowflakes as I drive home. I breathe in sharply and feel overwhelmed with gratitude for so many things. That smile, for one thing, when he found the coconuts – it was just for me, and I will treasure it always.

One Is Enough

The Scene: Interior suburban family home. Stacks of clothing, books, stuffed animals and various other items spill out of bedroom doors into the main hallway of the home. A preteen boy is pulling things out from under his bed as his mother sorts them. She is surrounded by piles of trash, Lego pieces, books, DVDs, colored pencils, and dirty socks. It appears to be room-cleaning day. “What about this, Mom?” the son asks, crawling out from under the bed holding a long, pointed, plastic witch nose, the kind that fits on a person’s face with adhesive tabs inside of it. “Put it in the costume box,” the mother says. The son gets up and walks out of his room. Out in the hallway, he is nearly run over by his somersaulting teen brother. The younger brother probably thinks that he might be able to get out of having to go all the way to the storage closet by pawning the witch nose off on his brother.

Younger brother (sounding enticing): Hey, you want this cool nose?

Older brother (without skipping a beat): I already have a nose.

[He continues somersaulting down the hallway.]

25 Things about Autism

I’ve seen this floating around Facebook lately and have decided to post mine here:

1. WHERE DO YOU CURRENTLY LIVE?
Oregon, USA

2. WHAT IS YOUR CHILD’S NAME, AGE AND DX?
Nigel, age 14, Autism

3. WAS YOUR CHILD PROPERLY DIAGNOSED?
Yes, twice. First time right when he turned 3, and again at age 5, for insurance purposes.

4. WHAT DID YOU THINK WHEN YOU FIRST LEARNED YOUR CHILD HAD AUTISM?
I was confused. Back in 97, when he was first diagnosed, all the information I had on autism was archaic. It said that autistic children sat in a corner and rocked themselves all day long. Nigel did not do that. But I quickly came to understand that autism manifests itself in many ways.

5. WHAT IS THE HARDEST THING ABOUT HAVING A CHILD WITH ASD?
The ignorance of the general public, and the bullying my son has endured. When he was younger, Nigel would have screaming meltdowns in grocery stores, public restrooms, etc. because he was in agony due to his sensory issues. People usually glared at us or made comments about “controlling” him. Also see #18 below. This is one reason why I blog about autism.

The hardest thing for my son has been the bullying. He has endured so much from mean, uncaring kids. And when he tries to defend himself, he ends up getting in trouble. I ended up homeschooling him because of the bullying and his anxiety that resulted from it.

6. WHAT IS THE BEST THING?
My son has an amazing mind and an engaging personality. Anyone who takes the time to get to know him – and to be patient with him – likes and appreciates him.

7. HAVE YOU TRIED THE DIET AND DID IT WORK?
Assuming this refers to GF/CF, yes, we tried it. Nigel does not seem to have the gut issues that others with autism have, so it didn’t work for him.

8. WHAT ABOUT OTHER BIOMED TREATMENTS- HBOT, CHELATION, ETC.?
The thought of chelation scares me, and I’m not familiar with HBOT.

9. WHAT METHOD OF ABA/Behavior Therapy DO YOU LIKE BEST?
Nigel had modified ABA-based therapy (and OT and speech) from the ages of 3 to 6, 4-5 days a week with two weekly home visits. We were fortunate that he had a positive response. I believe that is a key factor in how he is able to function today. After that, he continued with speech and some behavioral therapy over the years.

10. IF YOU COULD MAKE EVERY PARENT TRY ONE THING- WHAT WOULD IT BE?
Try not to be bitter. Sometimes, like when they smear blood from a bloody nose all over a room, or when you just have to pick up some milk at the grocery store and they’re screaming and bolting, or when they burn holes in the couch using a magnifying glass, or when the school has called you for the third time this week because of behavioral issues, or when you’re worried about their future, it’s really hard not to be bitter. We didn’t ask for this. No one does. But being bitter won’t help you; it just builds up and makes you feel worse. It took me a while to figure that out.

11. WHAT DO YOU THINK THE RATE OF AUTISM REALLY IS?
No idea – I try not to dwell on statistics too much.

12. HOW MANY KIDS WITH AUTISM LIVE ON YOUR BLOCK?
Just mine.

13. HAVE YOU EVER MET A RECOVERED CHILD?
No. It’s not a mental illness. It’s a different neurology, a different way of processing.

14. WHAT KIND OF EDUCATIONAL PROGRAM DOES YOUR CHILD GET?
Nigel is currently homeschooled for the past year, but we are in the process of having him go back to mainstreaming part-time.

15. DO YOU GET SERVICES/TREATMENTS THROUGH YOUR HEALTH INSURANCE?
some

16. DO YOU THINK THE DIVORCE RATE IS REALLY 80% FOR ASD FAMILIES?
Possibly. I’m divorced, but not because of the autism.

17. DO YOU HAVE A GOOD POOP STORY?
With his sensitive olfactory glands, Nigel never sought to do much with his poop except flush it. Prior to toilet training, he touched it once, and apparently that was enough. Blood, on the other hand, is a different story.

18. WHAT IS THE STUPIDEST THING ANYONE HAS EVER SAID ABOUT YOUR CHILD?
A co-worker of mine once said to me, “Having an autistic child must be easy.” I thought she was being sarcastic, maybe, but I asked, “Why do you say that?” She answered, “Because they’re so quiet.” I tried very hard to be calm as I said, “Just because some of them can’t talk does not mean they’re quiet!”

19. WHAT DO YOU SAY WHEN SOMEONE ASKS “WHAT IS AUTISM?”
I talk about the spectrum, that it’s neurological, that the jury’s still out on the causes, and I talk about how it affects Nigel.

20. WHO IS YOUR “AUTISM COMMUNITY HERO”?
I have said before that siblings are the unsung heroes of autism. I am so proud of my younger son Aidan and what he has experienced with having an autistic older brother. Please read about him here. And here’s another wonderful sibling. I’m sure there are many more. All of them have my love and admiration.

21. WHAT GROUP/ORGANIZATION DO YOU THINK HAS DONE THE MOST FOR THE COMMUNITY?
Not sure if this question refers to my own community or the autism community at large, but I am glad to be a Chapter Rep for the Autism Society of Oregon. They host many helpful seminars and awareness events, and I’m proud to be a part of it.

22. DID YOU VACCINATE YOUR CHILD AND DO YOU CONTINUE TO DO SO?
Yes, I did. Fourteen years ago most people didn’t question vaccination. But I continued to vaccinate him, because God forbid he contracts meningitis.

23. DOES YOUR FAMILY ACCEPT YOUR CHILD HAVING AUTISM?
Yes, they have been very supportive and loving. I am blessed.

24. WHAT LESSON HAVE YOU LEARNED AFTER ALL OF THIS?
I’ve learned that there’s still so much more to learn, and to do. Certain challenges can change with time and therapy, but other challenges take their place. And we’ll face them.

I’ve learned that even though sustained bitterness is detrimental, it’s okay to be sad sometimes. We’re human, after all. All of us. And we’re just doing the best that we can.

I’ve also learned that patience and a sense of humor and an occasional glass of wine will help immensely.

25. IF YOU COULD GO BACK IN TIME. WOULD YOU CHOOSE FOR YOUR CHILD TO BE NEURO-TYPICAL?
If I had answered this questionnaire years ago, when it was so hard just to get through the day, I might have said Yes. Now, I say No. I can’t imagine Nigel any other way. But I think, after all these years, that even if he had not learned to filter his sensory issues and started talking, at this point I still wouldn’t want to change him. People with neurological differences are amazing regardless of their functioning level.

Pride and Self-Prejudice

This is a hard post to write. I’m even struggling with how to begin. But it’s something that’s been on my mind for a long time, and I want to address it.

Months ago, I had a little free time (ha!), and I was surfing around looking at T-shirts on Café Press. I found one that I really loved, that I thought I just had to get for Nigel. It said “Autistic and Proud.” I got a lump in my throat just looking at it online, just thinking about how proud I am of my son and how hard he works to “be like everybody else,” as he puts it. I’m proud of how far he’s come, from his days of screaming due to sensory issues and not being able to talk. I think he’s wonderful, and so is every other person on the spectrum. Because all of them are trying so hard just to function in this noisy, bright, busy, often intolerant world of ours.

My moment of pride only lasted a few seconds – and then I remembered that the pride is mine. Nigel – and this is hard to write – is not proud of being autistic. No matter how I applaud his efforts, no matter how often I tell him that he’s got a really great brain, no matter how many times I tell him it’s okay to have autism. Here’s the thing: It’s not okay with him. Nigel has a non-acceptance of his autism. Certainly not denial – he knows it, he accepts that it’s part of him. He doesn’t refute it. But he hates it; he even says, “This stupid autism! I want to rip it out of my head” because of his negative social experiences in the past few years. I try to encourage him, tell him the autism is part of what makes him the fascinating person that he is. That I’ll help him as much as I can with the difficult parts. I know that having the diagnosis is good because it helps him to know the ‘why’ of his behavior and the challenges he faces. Maybe later the self-acceptance will come. I hope it does. Because I hate to see him berate himself and blame the autism and have him wish that it wasn’t a part of him.

But I don’t know how to help him get to that point of self-acceptance, other than to just keep doing what I’m doing. It just makes me so very sad. This is one of those hard things. When they respond well to therapy and learn to talk and adapt to their severe sensory issues so that you can actually take them out in public – when and if they can do all of that, autism is still there, making things hard. I think I wrote my recent “positive” post because I just needed a break from the negative. Because I know I’m not the only one in the house experiencing the negative. It changes over the years – but it never goes away.

And maybe that’s why Nigel feels the way he does about autism. He lives with it; he knows some of what it means for him, and most of it has been negative. I try to point out positive things for him – he learned to read at age three (before he could talk, even), he’s very good with maps, he remembers historical facts easily. And that’s all well and good. But at the end of the day, when you’re fourteen and you just want to be like everybody else, I guess it’s hard to be ‘autistic and proud.’ I just hope, with all of my motherly heart, that he’ll get there someday.

38 . . . um, Special?

I am thirty-eight today. And rather than discussing anything else with that number (revolver cartridges or bands), I’ll write about something more important to me.

When I turned twenty-two, I was in college, scrambling to finish in one more year, working full time and taking eighteen credits a term. It was nuts. I don’t know how I stayed on top of it. I realize now, of course, the if-I-knew-then-what-I-know-now, that it was nothing like the issues that came with having special needs kids, the single parenting, the working, the just-trying-to-get-through-the-day. But I certainly wouldn’t say that working my way through college was a cakewalk compared to parenting. At the time, it was a lot. It would be a lot at any age. And I’m sure glad it’s behind me.

So on my twenty-second birthday, I got up early, went to class, came home, worked on a paper, then went to my job as a clerk at a large chain drugstore. I walked into the back to clock in, and my boss called me into her office. “I see it’s your birthday today,” she said. “How old are you?” When I told her, she waved me off and said, “Aw, you’re a baby!” I walked out of there thinking, Hmm. How old do you have to be to get some respect? 25? 30? 40? I thought at that stage of the game, working my way through college, I’d earned at least a little of it.  

And now, sixteen years and a degree, a divorce, two kids, and a house later, I think I know what she meant. I feel like calling up that old boss, or walking into her office, and saying, “I’m 38 today. Am I there yet?” I’d like to think so. Because I finally realized that she was right. I didn’t get it at the time. I didn’t understand that it isn’t how busy we are or how old we are that earns us respect. It’s who we are. “Thirty-eight” might precede “Special” if you’re a band or a gun, but me? I’m singing with Aretha. She had it right all along.

Music for Thinking

We all know that music soothes the so-called savage beast, but it can do much more than that.  I have written before about how beneficial music has been for Nigel, including helping him to sleep better. So in December, for Autism Twitter Day (organized by Bonnie of Autism Family Adventures), I was excited to win a new therapeutic music CD. And the results of listening to it have been pretty wonderful.

Advanced Brain Technologies has created The Listening Program as a type of Auditory Integration Training/therapy. The program, first available in 1999, consists of audio CDs containing psychoacoustically modified classical music designed to stimulate the different functions of the auditory processing system. This is accomplished by carefully selecting compositions which include varied orchestration, tempo, octave, meter, etc. Post-production techniques involve filtration, audio bursting, blending, spatial dynamics, audio morphing, and more. Case studies demonstrating the positive outcomes with ASD kids using this program are available here.

Or, you can just read this case study: In the past two weeks since Nigel began listening to Music for Thinking before going to bed, not only has he slept better, I have seen noticeable improvement in two other areas. According to Advanced Brain, researchers have made a link between the middle ear and social engagement that provides insight into why some ASD individuals may demonstrate behaviors and communication difficulties in certain situations and environments. I hadn’t yet made that connection when I wrote about Nigel recently wanting to go back to regular school to be with his peers and the fact that he did so well at a Boy Scout function last week. But it makes sense now, after reading the detailed literature included with the CD.

The other area in which I notice improvement is in his schoolwork. He is frustrated because he wants to go back to regular school, and his attitude reflects that. However, the quality of his work has improved, as well as his ability to organize his thoughts. Just last week he wrote a three-paragraph essay about one of his Scout camping trips. It was well-organized, full of wonderful details, and included a conclusion listing all the things he learned on the trip. We had worked so long and painstakingly on his writing skills, starting less than a year ago with his first fledgling paragraph. To see him go from a labored few sentences to a beautiful, well-planned and well-written three-paragraph essay, well, I’m filled with such pride and emotion that I can’t even describe it.  I don’t think it’s a coincidence that he was able to do this after listening to Music for Thinking for two weeks. I’m a firm believer, and we’ll definitely be trying more CDs!

Changes

That David Bowie song is playing in my head – “Ch-ch-ch-changes . . . Turn and face the strange changes . . .”

Nigel and I have some big changes ahead of us. It’s been a year since I began homeschooling him, and just when I started to feel like I was doing okay with it, Nigel announced that he wants to go back to regular school. I’m not too surprised, actually. He is a social, extroverted person, autism notwithstanding, and even though he’s been involved in Scouts and has other social outlets, he’s reaching his limit of being home with Mom. And it’s showing in his lack of compliance with doing his schoolwork. It’s been increasingly difficult to get him to focus, to gauge if he’s learning anything, and if he is, whether it’s going to stay with him. His thoughts are always elsewhere.

I never expected to homeschool him for very long. Hell, I never expected to homeschool him at all until it became necessary! I had never even entertained the thought. I never thought I was the homeschooling “type,” whatever I thought that meant. I guess I thought it meant people who really wanted to homeschool their children for religious reasons – or any reason, for that matter. But once I realized that he needed it, a) because things were so bad at school that he asked me to, and b) because bussing him to a contained classroom in a different city was not acceptable to me, then I wanted to do it. Then I began to wrap my mind around it and come up with ways to make it happen. It was probably one of the biggest challenges I’ve faced as a single parent – making drastic work changes, schedule changes, and financial changes. I put so much mental energy into just getting used to the idea of homeschooling. Then I had to research what I was supposed to teach him, how to do it, and plan. It required a lot of focus to convince myself that I could do it.

It’s not over yet, of course, not for a while. The first step will be to see his doctor again, since we have decided to try some new medication to help with his behavior and need to get started with that. Then we need to attend his IEP (Nigel has requested, for the first time, to attend his IEP meeting, which is huge) to discuss what his options are. Most likely he will attend two classes in the morning and then come home, so he will be half-homeschooled. We’ll do this for spring term, and if all goes well, in the fall when he starts high school (gulp), he may be able to attend full-time with some support.

So, we’re making adjustments. It reminds me of when he was younger and he attended three different elementary schools before we found the right fit – we constantly made adjustments. We are no strangers to change. Part of me is feeling defeated – I had to work myself up to doing this in the first place (homeschooling), and now it is winding down. But it’s not like I’m throwing in the towel. We’re just making adjustments. Trying to find the right fit again. I have to believe that we will.

Two Literal Minds

The Scene: A Boy Scout meeting inside a church hall. About twenty scouts are in attendance, and their parents and siblings, as this is family night. A game, like TV game shows such as Who Wants to Be a Millionaire, is in progress. The room is rather boisterous, with people shouting out answers, and the mother of the autistic teen is always amazed at how her son is now able to filter all the sensory stimuli and can handle being in the room. Not only can he handle it, he is participating, calling out answers, exuberantly displaying his excitement when he is correct. His mother is seated next to another mother of a scout, a preteen with Asperger’s. The two boys are also in the same social skills class together. When the game ends and the winning team is the one that the autistic teen is on, he stands up, does a little dance a la MC Hammer, and sings “Can’t touch this!” People in the surrounding area laugh good-naturedly. Suddenly, the Aspie gets up out of his chair, walks across the aisle to the autistic teen as he is singing, and touches him gently with an outstretched index finger. Thwarted, the autistic teen says, “Aagghh!” and sticks his tongue out at the fleeing Aspie.

Their mothers laugh out loud together.

7 Positive Things about Autism

Let’s be honest: This is hard, this autism business. It’s hard on us. It’s hard on our kids. Those of us who blog have an outlet, a source for venting, and a type of therapy. But we don’t just talk about the hard stuff – trying to get through the day while worrying about the future. We’ve also been known to mention how rewarding it is to have a child with autism, how fulfilling. There is no doubt that our autistic children have enriched our lives.

And so, with that in mind, I give you my 7 Positive Things about Autism:

  1. 1) As special needs parents, we are the most attentive parents around. And that’s a very positive thing. I do believe that if my son were not autistic, I would still be an attentive parent. Of course I would. But the fact is that because he is autistic, I go above and beyond the norm of parenting. It’s harder, and it takes a lot out of us, which would seem like a negative thing. But I’m proud of what we do, the example that we set. I think it’s very positive.
  2. 2) We learn not to take anything for granted. Whether it’s talking, showing empathy, or being able to eat at a restaurant without screaming or writhing on the floor in sensory overload, we notice and appreciate every small step. Because it’s not so small for our kids.
  3. 3) Our ASD kids are unique. They view the world differently, and if we can just be privy to a small part of that, we are indeed blessed.
  4. 4) Nigel’s need for routine helps to keep me more organized. If I already know that we have pizza on Mondays and Fridays, then I don’t have to think about it. Dinner’s already planned two days out of the week. One less thing to deal with.
  5. 5) Autism teaches siblings, relatives, and anyone in contact with our kids – even ourselves! – to be more understanding, patient, and more accepting of people who are different. And that’s a very good way to be in this world.
  6. 6) As a writer, I get some great material because of autism! Whether funny or emotional, I always have entertaining or intriguing topics to discuss.
  7. 7) There is so much to enjoy about our children’s personalities, whether they are verbal or not. My son has a very direct nature, makes interesting echolalic associations and non-verbal mannerisms (even though he is verbal), and is very opinionated. He’s also got some great ideas forming in that ND brain of his. Some ideas are serious, some funny. And for all the difficulties he experiences (and I with him), I can’t imagine him any other way. Believe me, I’ve tried – it’s a natural thing for parents to do, especially on the hard days. But I think what gets us through are all the little quirky wonderful things that further endear us to the children we love.

Please add to the list – what, in your experience, is positive about autism?

Feeling Lovely

Just last week I was thinking that lately I hadn’t seen any blog awards floating around out there. And then, the very next day, Maddy of Sandwiched Genes (and three other blogs! Did I get them all?!) was kind enough to bestow upon me this charming award:

Thank you, Maddy! I hope some of your industriousness will rub off on me! In the meantime, I am pleased to pass this award to the following:

Best wishes to all! Here are the rules, should you choose to follow them (I usually don’t, but I’m on good terms with the blog police):

‘Copy, save and add the blog photo to your blog, share the love with 7 of your favorite blogs and be sure to mention who gave it to you’