Category Archives: Milestones

The Boy and the Vacuum Cleaner

[This post was originally published at Hopeful Parents]

Once upon a time there was a little boy who had autism. He did not start talking until he was five years old, and he often screamed and butted his head into people and walls to indicate his frustration. He also had agonizing sensory issues that made it impossible for him to filter loud noises, and he would scream and bolt whenever someone turned on a mechanical device in his presence. He would be disturbed by leaf blowers more than a block away, and the vacuum cleaner in the house was such an assault on his hearing that he would fly into a panic if anyone so much as walked in front of the closet in which it was kept. His parents would try to “sweep” the carpet as often as possible to avoid using the vacuum cleaner. When they absolutely needed to use it, one parent would take the little boy outside and comfort him while the other parent vacuumed.

After some time, the little boy’s parents divorced, and the mother would vacuum whenever he was visiting his father’s house. This went on for a few years, and then the father moved farther away, and the little boy could not visit him weekly. By this time the little boy had started learning to talk, and when it was time to vacuum, the mother would take him to his bedroom, show him how to cover his ears with a pillow, and shut his door while she quickly vacuumed.

It went on like that for several years. The mother would always notify her son before she would turn on the vacuum cleaner (as well as the blender, the food processor, and any other mechanical device in their home). The boy’s sensitive hearing still kept him most anxious about the vacuuming, and as his verbal skills increased, he would head to his room and admonish his mother, “Don’t start until my door is shut!” and call out “Is it over?” when the vacuum cleaner had stopped. By the time he was a teenager, the boy told his mother, “That vacuum is like shrieking banshees in my ear.” She thought it would always be that way, and sadly she wondered what other sounds in the world still tormented her son. He had gotten to a point where he could go to a movie theater if he wore ear plugs, but the vacuum cleaner still plagued him.

Then one day, after being in a series of situations involving loud noises and noting that her son was affected by them far less than he used to be, the mother decided to try something. She approached her son and mentioned that it seemed that his hearing wasn’t as sensitive as it used to be, and he said, matter-of-factly, “Well, I’ve just learned to deal with it.” She pointed out that he could now mow the lawn while wearing ear plugs, and she asked if he would be willing to try that with vacuuming.  “Okay,” he said in his typically flat voice.

The mother gave him a brief tutorial on the vacuum cleaner, and, armed with his trusty ear plugs, the boy began to vacuum his bedroom while the mother went to work on something in another room. Amazed that he agreed to do it in the first place, she figured that he would do a quick job and shut the vacuum cleaner off as soon as possible. So when four minutes had gone by and the vacuum cleaner was still running in his room, she went back to check on things. She discovered that her son had put an attachment on the vacuum nozzle and was methodically detailing the corners of his room. She stood there, marveling at this unexpected turn of events. And then, with the ear plugs still firmly planted in his ears, her son looked up at her and smiled. The shrieking banshees no longer consumed him.

After the mother picked herself up off the floor, she praised him for taking the initiative and doing the extra work in the corners. She asked him how it went for him – vacuuming! – and he said in his flat but beautiful voice, “It was fine.” And even though it was a small thing, inconsequential in the grand scheme of things, the mother crossed “vacuum” off her mental list of things that her son, now almost sixteen, would “never” do and reminded herself that anything is possible. Anything.

The Everyday

When you have a special-needs child, there are plenty of things that you wonder if your child will ever be able to do. So when they actually happen – when you hear your five-year-old say I love you, even though it’s echolalic, or when your child sleeps in their own bed, or doesn’t wet it, or when he holds a pencil for the first time, or pets a dog – we note the occasion with much fanfare, and rightfully so. We know the effort involved in making those things happen, how long we waited, how much we hoped. They are nothing less than miracles.

But milestones don’t happen every day, of course. If they start happening every day, they’re no longer milestones. They become part of our daily life, the status quo. They are the everyday. And sometimes I find as much hope in the everyday as I do in the milestones. Why? Because we can’t live from milestone to milestone. We live from day to day.

My son was diagnosed with autism at the age of three and did not start talking until he was five. In 1997, we didn’t know for sure if he could learn to talk. And so when he slowly got started – first with various stages of echolalia, then, when he was using more spontaneous speech, learning pronouns, articles, tenses, and syntax – I was overjoyed. It didn’t matter to me that his voice was always flat, usually expressionless. I figured it would always be that way, and I loved it. I never even hoped that he would develop voice inflection because I was just glad to hear his voice in the first place.

Two years ago, our regional autism consultant created a weekly social skills class for my son to attend at his school, so that he could learn to communicate more appropriately with his peers. The object of the class was to instill conversation skills and teach socially appropriate behavior as well as how to interpret gestures and non-verbal communication. But something unexpected happened, and I can only attribute it to the social skills class. About three months after he started the class, I began noticing that he was using voice inflection. And he was doing it appropriately, not just random variations. He was putting emphasis on the right words and his tone was no longer as flat. And he’s been doing that for almost two years now. The boy who, for so many years, could only parrot lines from Disney movies or Scooby-Doo cartoons when he wanted to interact with people is now regularly conversing with voice inflection. That is now my everyday. And that is what gives me hope.

It’s true, the milestones sustain us. They are remarkable, miraculous, and worth every bit of celebrating. But when you sit down and stop to think about it, when you realize, hey, we’ve been using the PECS cards for three months now and my child rarely shrieks at home anymore, thank God, that is your everyday. That is where hope lives.

I’ve had many different everyday realizations over the years. In fact, that one about the PECS cards was one of them, over twelve years ago. Then I had another one a few years later when I realized that we were no longer using the PECS cards. There have been many other everyday realizations, equally hopeful. But now, my son is speaking with voice inflection, an unexpected gift, and that is now my everyday. What’s yours?

Flying Solo, Part 2

Please wait, an agent will be with you shortly.

Your chat session has started . . .

Micki: Thank you for contacting Economy Air. My name is Micki. How may I assist you today?

Tanya: I have downloaded the unaccompanied minor form for my two children, ages 13 and 15. My question is if the meeting party needs to sign where it says “signature of Party Accepting Custody” when they actually pick up the children, or does it need to be signed by the meeting party beforehand? Thanks.

Micki: 13 and 15 year olds traveling together are not considered unaccompanied minors. The 15 year old is considered an adult.

Tanya: My 15-year-old has autism, and their father still needs to go directly to the gate to pick them up.

Micki: [no response]

Tanya: He’ll be fine on the plane, but we don’t want him going through the airport unaccompanied.

Micki: That is fine. We will document the itinerary so that it’s understood by the agents. All the father needs to do is show his identification at the ticket counter and they will issue him a gate pass to meet the flight.

Those who happened to catch my post a few days ago know what transpired with the December 25th travel plans, and why the flight had to be scheduled that day. But since we had no way of knowing that it would be canceled, the boys were prepped for their first solo flight (!). We practiced lifting up their luggage to put it in the overhead bins. We talked about being patient while waiting to de-plane and not making comments about how people should “just move.” We talked about what to do if for some reason their father wasn’t at the gate when they landed. We went over what topics are not okay to talk about with airport security. Special needs were noted with the airline agent in an online chat that could be printed out for verification. Not surprisingly, there were many preparations for this huge milestone.

And although they ended up not flying that day, we still planned to have them return to Oregon by plane.  I got up that morning and prayed for a fogless arrival time, so that the boys’ plane could land safely. Their father called to let me know as soon as they boarded in L.A. He sounded so proud, describing how he watched the boys get on the plane, and how they waited patiently for an elderly woman in front of them.

When the time came, I drove to our little airport to pick them up. The sky looked good, but as I neared the terminal, my body started gasping involuntarily. It wasn’t a panic attack, which I’ve had in the past. No, it was just a mom, overcome with emotion. I couldn’t help it. Neil was doing something I never thought he’d be able to do! He has come so far, and he never ceases to amaze me.

I parked the car and pulled myself together. I went to the counter to request a gate pass. They hemmed and hawed a bit at first (I wanted to say, So what if they’re teenagers? They are my children, autistic or not, and I have every right to meet them at the gate!), but all I had to do was drop the A-word, and then they were accommodating. The flight was only a few minutes late, and I waited anxiously at the gate.

I was afraid that I would start crying again with their arrival, but as soon as I saw them, my face broke into a huge grin! Adam ran past me, looking unwell. “Mom, I’m sick. I’m going to the bathroom,” he said as he handed me his luggage and took off. “What’s wrong?” I called after him, but he hurried away. I hugged Neil and asked him what was wrong with Adam. He said he didn’t know, and we walked over to the side to wait for him. Neil said that the flight was fine, and then he proceeded to tell me about how, at the movie theater the night before, he threw up twice during the 3-D showing of Avatar. “That 3-D was too good, I guess!” he said with a chuckle. “I’m sorry that happened, honey,” I said. He told me that all the 3-D aerial scenes made him dizzy and sick. I hadn’t even thought of that as a movie-related sensory issue. If it’s not one thing, it’s another!

Adam returned then, explaining that he’d felt a little airsick when they started descending, and then the stuffiness of the cabin and having so many people around him while waiting to de-plane just got to him. “At least I didn’t throw up in the plane,” he said. Yes, at least. Oh, my poor SPD boys! I felt so bad that they had both been sick, especially when I’d hoped that they would enjoy the movie, and later, take pride in their autonomy on the flight. But my concern took a back seat to my overall relief and exhilaration. They did it! Their first solo flight! After many years of effort in dealing with their challenges, it’s so validating to just let them fly.

Image credit: Marcelo da Mota Silva

A Little Boy’s Dream

What kind of shoes are these and what’s the seven-year story behind them?

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Picture a little boy, four years old, with wavy, light brown hair and captivating hazel eyes, who cannot talk. He tries to play with other children by bumping into them and laughing. He doesn’t know how to play, but he tries. He sees children laughing and playing together as a group, so in his mind, he thinks they are bumping into each other, and he believes that this is the way to play. The other children don’t understand. They think that he is being mean, that he is pushing them and laughing at them. All he wants is to join in. And he craves physical contact to meet his proprioceptive needs.

Picture the same little boy, now in second grade. He is talking, although he still exhibits echolalia and mixes up pronouns and word order. This, along with his sensory issues and behavioral challenges, makes it rather difficult to have friends, but he still tries, usually by initiating physical contact. One day, while on a class field trip (accompanied by his one-on-one aide) to the local high school, he visits the Wrestling Room. He is entranced. Though not able to verbalize it yet, he consciously vows that he will attend this high school and be on the wrestling team.

Now picture that same boy at age fifteen. His darker brown hair has developed more pronounced curls, and his eyes are still as captivating. He has learned, through social skills classes and personal experience, that physical contact is best reserved for roughhousing with friends that he’s known for a long time. Then the day comes, two months into his freshman year, when he signs up for the wrestling team. He comes home from school and tells his mother, using perfect sentence structure, that he needs to get a physical done as soon as possible so that he will be allowed to “get on the mats” at practice. He reminds her of how he’s waited seven years to be on the high school wrestling team, and she tells him that she remembers. She remembers that day so long ago when she picked him up from school and his aide told her about the field trip and how much he loved the Wrestling Room. She remembers the various elementary school Christmas Programs that were held at the high school over the years and how, even though her son couldn’t be in the program because of his sensory issues, they would walk by the Wrestling Room and he would tell her “That’s what I am going to do when I go to this high school.” And his mother, not sure if he could ever comprehend the rules of a sport and actually be on a team, but wanting to be supportive, would say in a positive tone, “We’ll see!”

They get the physical done, they buy the wrestling shoes, and the son starts diligently attending practice every day after school. They go to the Parent Night, and the mother approaches the coach at the end of the meeting to introduce herself. She is already impressed by the fact that, during the meeting, when her son asked a question that was a bit self-explanatory, the coach had answered him with genuine respect and patience. So she goes up later and shakes his hand and asks if he is familiar with her son’s IEP for his autism. And the coach assures her that, yes, he has spoken with her son’s case manager and is aware of his challenges. Then he tells her with such sincerity how well her son is doing. And the mother fights a lump in her throat as she tells the coach, “He’s been wanting to do this for a long time,” and thanks him, very much.

Now picture the little boy’s mother picking him up from wrestling practice the next evening. She pulls into the parking lot and sees his lean frame striding toward the car, wrestling shoes in hand. It strikes her that her son is on a sports team for the first time ever. And now she is picking him up from practice, just like all the other parents do with their sons. She sees a huge smile on her son’s face as he nears the car. The lump returns and her eyes sparkle with tears. He has followed his dream and achieved his goal. He is on the high school wrestling team, and he loves it.

He gets in the car and excitedly tells his mother about the techniques he is learning and how he’s already pinned two people at practice! The mother, hoping that the darkness is hiding her watery eyes, tells him how proud she is of him. She asks him if wrestling is everything he thought it would be. “Well,” he says, “I didn’t know we would have to learn tactics. But I like learning by doing.” She asks him what his favorite part is about wrestling. “That I get to meet new friends. And they understand me.” The mother, hoping that her voice isn’t shaking too much, tells him how great that is. And how glad she is to hear it. All those years ago, he knew exactly what he needed.

Different Milestones

Tonight was the monthly Southern Oregon Autism Support Group meeting that I facilitate. We had a low turn-out, probably due to illness, but it was one of the best meetings we’ve ever had. For one thing, two new members attended, so that was great. For another thing, they were the only two members who attended. And as much as I love when we have a big turn-out, when only three people are present, you can really talk.

Since one of them was new to the area and the other one was new to the diagnosis, we started off by talking about local resources. It’s a short list for our area, unfortunately, but I think I gave them a few good leads. We moved on to listing various topics of discussion that we can focus on for future meetings, topics that would be most helpful to everyone (since our group consists of parents of preschoolers to adults). I want this support group to be as beneficial as possible. And that led me to mention one of the topics that I’d like to feature at a future meeting – the emotional issues we face as ASD parents. Usually that area is relegated to the professionals. But what if you can’t afford a therapist or don’t have the time to see one regularly? And if the therapist doesn’t have a child on the spectrum, how are you going to feel that total support and understanding that you feel when you’re talking with other ASD parents?

One of the new members, a mother of a 24-year-old son with Asperger’s, opened up and talked about how hard it is receiving the wedding invitations and college graduation announcements of her friends’ children. How difficult it is when your child doesn’t meet the typical milestones. And I knew – oh, how I knew the emotions she described. It’s not that our children have disappointed us – it’s not that at all. It’s that we wish things didn’t have to be so hard for them, and for us. It’s that we fear the future. For some of us, it starts with the not-pointing-at-things-to-show-them-to-us. Then there’s the not-talking. For others, it’s the not-potty-training or not-making-eye-contact. Or all of the above. And plenty more.

But then, while talking, we realized that our kids have different milestones, and that’s okay. Because whether or not they ever meet those typical milestones, we celebrate the ones they do meet. Like, in Neil’s case, not shrieking in a public restroom – that was huge for me. Being mainstreamed in a regular classroom (with full-time one-on-one aides, but still – huge). Going to the grocery store without distress – anywhere, really. Those are some of my milestones. And only those close to us and other ASD parents can really get how huge those milestones are.

Take for example, when I was at work yesterday. The boys were home because of Veterans Day, but Neil needed to go to his school for wrestling practice (participation in a team sport – huge!) for two hours. Since he’s been successful with riding his bike to and from school every day, I took a major leap of faith and thought that he could handle riding there and then home afterward. I told him he had to call me as soon as he got home to let me know. We calculated that he would be home by 10:30 and would call as soon as he put his bike away. Adam would be home to let him in.

So I’m at work and 10:30 rolls around. Of course, I’ve been anxious pretty much the whole morning. But the phone rings right on time (big!), and it’s him. However, from the background noise, I can tell that he’s not at home. Semi-panic, or pre-panic, sets in. “Where are you?” I ask. He tells me that he’s still at the school, that he was mistaken about the time practice started, which was an hour later than he’d thought, so he wouldn’t be home for another hour. So, even though his instructions had been to call me when he got home, he realized that he should call me at 10:30 anyway to let me know that the situation had changed. He didn’t say that, but that’s what happened. And I about fell out of my chair in shock.

I thanked him for being so responsible. I could barely get the words out. Dumbstruck, I turned to my co-worker to try to share the moment with her. Of course, she didn’t get it at all. What’s the big deal about a 15-year-old doing that? I tried to turn it into a teachable moment by describing my son’s challenges and how autism affects him. Not a flicker of understanding.

But tonight at the meeting? Complete empathy. They totally got why that was huge without me explaining it. I felt validated. I felt understood. I didn’t feel alone. And that, my friends, is the whole reason for a support group.

We have different milestones for our kids, but we do have them. And it’s so affirming to know people who understand those milestones, and celebrate them with us. My co-worker has known me for five years and didn’t understand. Those two women had known me for one hour, and they were celebrating with me. Best. Meeting. Ever. And that’s a milestone too.

Image credit: Stephanie Hofschlaeger