Tuesday, October 28, 2008

A Diagnosis Story

This morning I shared my family's experience as a panelist with a classroom full of college students taking an early childhood class. Two other parents shared their stories as well. I told them my ten-year-old son with autism was a better speaker than I and meant every word. I missed my little shining star.

Mostly I shared the reasons behind our delayed diagnosis and pointed out my son may have been a stronger candidate for full inclusion in the schools if he had been able to get more early intervention. My major point, however, was that early childhood education teachers (both a special education and a regular education teachers) played a stronger role in both identifying the delays and the reasons and providing early intervention than the doctors did.

To make a long story short, our family doctor had no clue why my son had some delays. He wanted me to go to a psychologist who was going to charge $1000 to implement a diagnostic survey. My insurance would've only paid $400 of that amount. So, I thought that we could do without seeing the psychologist.

Instead I enrolled my child in a regular preschool program. She noticed that he was delayed and had a speech therapist watch him. That therapist agreed my son could use some intervention so the teacher helped us get an assessment done by our school system. An Individualized Educational Plan meeting was set up and my son was enrolled in an early childhood program.

Then we moved three months after he began the program. We brought the IEP with us. We decided that maybe my son should see a pediatrician instead of a family doctor. That doctor listened carefully to my concerns and suggested that my son might have autism. I thought 'no way' because I thought autism applied only to people with more challenging autistic traits.

After looking at the survey she gave me I changed my mind. After looking at my answers, she suggested we see a developmental doctor in Ann Arbor. It took eleven months to get in. The developmental doctor exasperated us when he said he liked to see children come in at a much younger. My son was six years old at the time. I would have liked to come in much sooner too, but that was not meant to be.

While we were waiting to see the developmental pediatrician I had a fall conference with my son's preschool teacher. All the therapists (occupational, speech, etc.) were there. I was going to tell them I thought my child had autism and they were going to tell me the same thing! So an assessment team of four professionals was assembled and each spent twenty hours observing my son in our home and the classroom as well as reviewing his case. He qualified as AI (Autistic Impaired). He was five and a half at the time.

Besides sharing the diagnosis story, I also told the class that my son spends half a day in regular education and half a day in special education and that he also gets speech, occupational and physical therapy. I added that I have been happy with my son's progress since the day he began the the special education program. I also talked a little bit on the subject of siblings and marriage. I think the students appreciated our stories, although I think I would have enjoyed having my son (who was in school at the time) talk more so than talking to the students by myself.

Monday, October 27, 2008

A Bloggy birthday


A year ago today I started this blog with this post. My husband renewed my domain for ten more years, so I suppose I'll be around for many more years. Ten or eleven sounds like a long time, but I'll be married for thirteen years in December and that time has seemed to go really fast.

I've learned a lot about autism over this year just by blogging. I've also developed some special interest areas such as grief, stress, adults with autism, and girls with autism. Best of all I've met great bloggers, most of whom, I mentioned on this post.

I went to three funerals including one for my own father. One was on Christmas Eve for a young boy, age 8, with autism. We honored the little boy at an event I helped to organize. I blogged about that here. The other funeral was for my beloved aunt. Needless to say it's been a difficult year.

Moving on to a cheerier topic, the popularity of some pages have surprised me. These are the three that seems to be visited the most: Girl with Asperger's Syndrome Eliminated from America's Next Top Model; Just for Fun: Asperger's Syndrome Test; and; Aqua Dots: Moon Sand and Floam Saved us from Potential Danger .

Most importantly, though, I started this blog on Make a Difference Day with the hopes that I'd help to make a difference through this endeavor. I think I did (this may be apparent if you check out most of my posts for the month of April--Autism Awareness month), though it's impossible to know how much.

My ultimate goal now is to continue to blog from year to year. It's not easy to keep going. Blogging burnout is common throughout the blogosphere. But I'm hoping to be around for awhile and hopefully make a few more blogging friends along the way.

Friday, October 24, 2008

An Embarassing Meltdown Moment

My son has had three meltdowns in front of his school since April. I'm lucky that I've only gotten offers of help or sympathetic looks while this is happening. Mostly, I think all three of the meltdowns happened because he often has trouble transitioning from school to home and because on those particular three days he faced circumstances that were overwhelming.

Our last meltdown happened after school on Tuesday. I think he was upset because we forgot to tell him ahead of time that he would be in his MiCi room all day instead of spending the morning in his third grade classroom before going to his special education room in the afternoon. The third graders were taking the standardized MEAP test. My son takes a modified version, so he needed to be in the special education room which was the best place to take the specialized version.

He struggled with the first and second days of the MEAP testing although he didn't have a meltdown after school. That happened the third day when we forgot to warn him ahead of time about the change. He does better when he gets advance warning about changes.

I was not expecting frustrations to come flying at me the minute I saw him. The minute I spoke to my guy I knew that a meltdown was almost inevitable. He told me to go away. So I walked away for about 100 feet or so before returning, but that wasn't enough in his opinion. He wanted me to walk all the way home and then come back. It would have taken me five minutes or so. Sometimes we walk to school. Sometimes we drive. That day I happened to walk, not knowing what the future held.

I might have accommodated my son, but I had to pick up my kindergartner. So I made an attempt with my son trailing me and screaming for me to go back home. My younger son's teacher said she could keep him awhile so that I could calm my older one down. So I left my little one for a bit while I tried to calm my other one, but nothing I said or did would do unless I granted his request. So, I gave up trying to calm down the older one and picked my little guy up while my furious one tried to prevent me from doing so.

None of that was embarrassing to me. I'm doing my best to get used to meltdowns in public. They are not fun, but most of the time we manage or "muddle through" as I sometimes like to say. I managed to get my son to walk with my little guy for a little ways. However, he plopped himself belly down on the grass and sobbed before we even left the school grounds. I knelt down to rub his back and talk in a soothing voice while making sure my little guy stayed safe and nearby.

After about a minute of this, I noticed an awful smell. It didn't take long for me to discover that I had about a six inch trail of dog poo (between my ankle and knee) on my jeans. Ugh. I was so busy trying to shepherd both boys through the chaos, that I hadn't paid attention to where I was kneeling! This is where the embarrassment comes in...

My son still refused to come with me, but I couldn't stand having poo on my leg, so I walked home as fast as I could with my little one in tow. Then, I jumped in my van and picked up the older one who finally was ready to go home. Yes, I left him for a few minutes, but I was pretty sure he wasn't going anywhere. Kidnappers are more likely target an easy to claim victim rather than a tantruming ten year old who wouldn't budge from his spot.

The secretary was with him when I returned. I felt sheepish that I hadn't told her what was going on. However, I really stunk of dog crap and I've always been uncomfortable around the secretary who is not exactly a warm, fuzzy person. I thanked her quickly and guided my charge to our mini van.

Most of the time my son's meltdowns have happened at home, so having one happen in public is sort of hard--especially when my vehicle isn't nearby. I suppose I could have handled matters a little better, but I muddled through it the best I could. The important thing is that my story has a happy ending.

I was able to get us all home safely. My son calmed down, and I was able to disinfect my icky jeans and put on a clean pair. If another public meltdown occurs, I know I'll handle things a little better while being more than aware of where I sit or stand. There's nothing quite like learning from one's mistakes!

Wednesday, October 22, 2008

A Favorite Activity: Teaching College Students

This past Monday, my son with Autism Spectrum Disorder 'taught' a class again. Reaching out to future teachers is something he and I (and the rest of my family) really enjoy doing. This time instead of going to Central Michigan University, we drove 20 miles south to Alma College to teach an evening classroom of future general education teachers who are taking a course on special education. We were invited by the instructor, whose wife happens to teach my son's MiCI class. She attended our presentation and was able to provide a few insightful comments as we went.

In preparation we packed up his three favorite stuffed froggys: Tree Froggy, Big Dot Froggy, and King Squeaky. We also took a small American flag. My son led the class in the Pledge of Allegiance and the National Anthem while holding the flag. The point of bring the flag and froggys was to illustrate that children with autism (and other special needs children as well) often have special interest areas. I wanted to stress that a great way to reach a special needs child is to find out what those areas are in order to connect with the student.

My major role in the presentation was that of a guide, filling in the blanks as my son presented and giving him suggestions about what to say to the class. He's a much better lecturer than I am and has no fear about getting up in front of a lot of people. It's a strength that gives us great hope for his future.

My little one wanted to teach too, so we brought a couple of his stuffed cats to show and he stood up front with us. As the guide, I made sure he was able to say a couple things to the class.

My husband also came to the presentation. He said a few positive words about our son's future and pointed out that parents of special needs children have different backgrounds and different levels of parent involvement in their child's education. He was right in his element as he works as a librarian at Central Michigan University. Talking to students is very much part of his job.

It was our first time presenting as a family. As a whole, we presented for about forty five minutes. It worked out having our youngest son there because I was able to make a point about the importance of balancing the needs of our older son (who has autism) with the needs of our younger one, who is neurotypical. I also was able to point out the difference between the educational journeys of the two. My youngest will likely stay in the same school (unless we move) from Kindergarten to fourth grade. My oldest will have been in four different schools since Kindergarten by the time he finishes the fourth grade.

According to a follow-up email from the instructor, our presentation was a success. He said that the students really liked our son and that they would have enjoyed having him in their classrooms. In turn, we appreciated the students. They were attentive and we had numerous smiles coming our way as we presented.

The instructor and my son's teacher was kind enough to present us with a gift card to Subway, my son's favorite restaurant. I showed it to my son that night. He showed great excitement over the gift.

"We're going tomorrow!" he said. So we went last night. It was a great bonus for doing something we all enjoyed.

Note: With the idea of inclusion and mainstreaming popular nowadays, it is a great idea for general education students to take at least one course in special education. If I had my way, they'd all take a class just on autism as this condition is becoming increasingly prevalent. Chances are, most of the future teachers will have special needs children (many with autism) included in their classroom.

Sunday, October 19, 2008

My Son: "Let's Go Pack!"

I've been thinking for awhile that I should let my sons pack their own clothes whenever we go on short weekend trips. Allowing them to fill their own suitcases would give them some independence while also freeing me up to do other things.

When we took our most recent trip to my son's beloved state of Ohio (our relatives live there) my son with ASD surprised me quite a bit. I told them about our trip on our way home from school the day before we were to leave.

"Come on, let's go pack" he told his brother when we arrived home that afternoon. I reminded them that they shared a suitcase. Neither one objected. They pulled one suitcase out of the closet. Instead of fighting over the limited space of the suitcase, they were partners. I didn't hear a word of argument while they were packing.

I had told the oldest that he needed to put two of everything (shirts, jeans, pajamas, etc.), but realized that he probably wouldn't quite get it right without a visual prompt such as a list. Again I was surprised, but not by the fact that he followed my instructions. He didn't and neither did his little brother. The surprise was in the extra stuff that was packed.

Amongst the jumble of jeans, t-shirts, and underwear was a Scooby Doo, a white stuffed cat, a tiny black and white stuffed cat, one small stuffed frog and two big stuffed ones. The suitcase wouldn't close. The stuffies had to go, although each boy was later allowed to toss their choice of toys into the van as stowaways.

As for clothes, they pretty much packed what they needed along with lots of extra underwear. Go figure. Still I had to revise by throwing in a pair of jeans here and a pajama top there. I also sorted out the jumbled suitcase by separating the ten year old's clothes from the five year old's stuff. The end result was being packed a day earlier than normal. Yay for the boys. Yay for being ahead of schedule!

Thursday, October 16, 2008

My Son: "No Harm Done!"

I have been trying to discourage my son from making his morning announcement in front of several lines of school children. So far I've had absolutely no success.

"It's not an announcement, it's Peak programming, " he'll tell me. (Peak is the name of the after school program at our school. I'm a stay at home mom, so there is no real need to sign the boys up.)

"Well, don't do the Peak programming thing then. You look kind of silly when you do that," I told him.

The ensuing silence meant my plea would be pretty much ignored. Sure enough. Once the whistle blew and everyone was in line, my guy went up in front of everyone. Bouncing around a bit with a big smile on his face he made his announcement. I witnessed it because I usually stand with my kindergartner (at his request) until the bell rings. All I can say about his announcement is that it really doesn't make a whole lot of sense.

Anyway, the little one's line is right next to the one for the MiCI class. My son is the only one in his class who lines up there every morning. On the other side is a class of third or fourth graders.
This announcement thing has been going on since school began. Some of the kids have figured out I'm his mom. They look at me with puzzled expressions. I shrug my shoulders and smile as if to say "that's just the way it is." Trying to physically stop him would just cause a scene, so I let him do his thing.

He did it again this morning. But this time he added something just for me.

"See mom. No harm done!" he said, green eyes twinkling. And then he went into the school.

Wednesday, October 15, 2008

National Popcorn Month

In terms of a National 'Something' Month, most people in the U.S. think pink when October rolls around. They are less likely to think of white and yellow, the colors of popcorn. Yes it is National Popcorn Month. I learned that a short while ago when my son brought home an easy-to-read copy of a News-2-You newspaper from his special education class. The featured story was popcorn and I learned all about popcorn month. (See this link for a sample of News-2-you, but be prepared to read about a pop culture phenomenon instead of popcorn).

If you want to celebrate popcorn month, please see this link for a couple of cute craft ideas. As for me, I've had my fill of popcorn for awhile. I can honestly say that I fully celebrated National Popcorn Month to its fullest.

Last Friday I was a popcorn mom. I spent two-and-a-half hours filling, closing and delivering bags of popcorn in the school cafeteria. I probably could have popped a couple of batches or so, but I left the popcorn machine to the rest of the crew since unfamiliar gadgets/machinery and I don't really mix. In all, the school custodian, two aides in the Mici room, the teacher and I filled 352 orders, plus at least 30 small extra bags for the office. My son and his classmates helped a little here and there.

Friday popcorn days are fundraising opportunities for individual classrooms. Most schools in my area have popcorn Fridays. Each classroom gets assigned one or two popcorn Fridays a year. The bags sell for 50 cents a piece and are sold to staff and students. Sales tend to go up if a prize is offered for each bag. That was the promise last Friday. A Pixie Stix or two was popped (oops, sorry about the pun-well maybe not!) into each bag. My son's classroom did quite well in terms of profits.

Though it was a lot of busy work, it was fun and easy way for me to volunteer for the school. I see many popcorn Fridays in my future. I'm also predicting a chance to chaperon a field trip for a certain lucky popcorn Friday classroom. My son's teacher is thinking about using the money for an outing.

A Special Note: My guy (who has autism) was given the opportunity to make the popcorn announcement over his school's p.a. system. He was right in his element as he has been known to make announcements from our street corner (to my dismay). So I was glad he had the chance to do an announcement in a proper setting. The teacher said he did a good job. : )

Saturday, October 11, 2008

Conversations: The thingamabob and the whatchamacalit

My ten year old likes to fancy himself as the family activity planner. He'll say we are going to do something and then he expects to do it that very day. His ideas vary from going swimming at the local university recreation center (we don't have a pass and it's expensive to go!) or to his favorite restaurant.

Most of the time my husband and I prefer to to do the activity planning. Often we'll discuss plans after both boys have gone to sleep. However, that is not always possible. It used to be that we were able to spell out our ideas to each other. But now, our third grader can read and spell pretty well. He proved it one day when he said he wanted to go to "S-u-b-w-a-y" for dinner. See? He can spell his favorite place to eat, so that is not an option anymore. So the next step was to try to talk in a way that we (or at least I) thought was beyond him.

We try to mix up our restaurants a bit when we go out. But every once in awhile we decide to go to Subway. The quick service of fast food restaurants make eating out easier with my son with ASD and fortunately his favorite place is one of the healthiest places to eat. One day when we were trying to figure out our plans with little ears around us, I suggested this very place without using the word.

"We should get a thingamabob at the whatchamacalit," I said.

Somehow my husband understood that I meant our son's favorite place and agreed that is where we would go. So we did.

A few weeks later my son asserted himself (well tried to anyway) as the family activity planner again. What did he say?

"We should get a thingamabob at the whatchamacalit! And I know what that is," he said.

"What is it?" I said, having a hunch what he would say.

"It's a sub at Subway! That's S-u-b-w-a-y."

That pretty much sums it up. My days of subterfuge are pretty much over!

Thursday, October 9, 2008

Conversation: "Look a Gaggle of Geese!"

A Football* Story

It was an overcast sort of evening. My husband, five year old and I tossed first a Frisbee and then a football around in our front yard for awhile. My ten year old with autism took a mild interest in our activities. He would join us for a bit then go off and either watch us from a distance go off to do his own thing before joining us again. We were encouraging but not forceful in getting him to participate.

Our five year old caught both the Frisbee and the football quite a bit. Our ten year old (who has had physical therapy at school for at least three years now) tried, but missed most of the tosses coming his way. He would hold his arms out straight in sort of an awkward fashion, but wouldn't really watch the ball as it came to him.

When it was getting near our boys' 7 p.m. shower time we let everyone finish or at least try to finish on a good note by catching the ball. My husband and I both caught our tosses and the five year old also caught his on the first try. However, my little athlete protested when I picked up the ball to try again (unsuccessfully for the second time) after our ten year old missed the throw.
"Hey, why'd he get to do it again?"

"We want him to have a chance to catch the ball. I'll give him three tries. You caught yours on the first try." The protester didn't argue with me anymore.

"OK C, ready?"

"Ready!"

"One, two, three!" I said as I tossed the ball.

Suddenly my son no longer appeared ready because my "three" competed with another sound. Honking geese completely and totally distracted my son. A group of them were flying over our home in the usual lopsided v-fashion in a sure sign of fall. Instead of looking at the ball flying towards him, my guy looked at the geese.

"Hey it's a gaggle of geese!" he shouted, his gaze toward the sky.

The football reached him then. He must of sensed it somehow or saw it from the corner of his eye. His arms snapped upward in a reflexive action. He caught the ball! He caught the ball? How'd he do that?

"Good job, buddy!" I exclaimed. My other two guys cheered the successful reception as well.

The ten year old smiled, but then repeated his observation of the geese. He'd keep repeating that until one of us affirmed what he said.

"Yes, that's a gaggle of geese. Gaggle--that's a good word," I said. My guy was satisfied with that and went into the house. I then looked at my husband.

"He was looking at the geese!" I said, referring to my son's unexpected catch.

"But it counts," he replied.

"Yes I guess it does," I said.

Yes it it does.

* American style football

Tuesday, October 7, 2008

Conversations: Ding dong, the bells are ringing!

This week I have a few conversations to share with readers. Here is my first installment:

Well, maybe I should write belles instead because the ding dongs that I most recently heard were from a bevy of second or third grade girls on a school playground. It was morning and I was in the process of dropping my two boys off when I heard this conversation:

"Ding Dong! Ding Dong! Ding Dong," the chorus chimed while all the "bells rocked" backed and forth.

"What are you guys doing!" a boy asked them.

"Ding Dong! Ding Dong! Ding Dong!"

"You guys are weird!" he exclaimed.

"Uh, we know that already," one of the girls told him.

(pause)

"Ding Dong! Ding Dong! Ding Dong!"

And the chorus chimed on. I think the young onlooker stuck around, but I am uncertain as I was pretty busy keeping an eye on my two guys.

Note: My guy with a mild form of autism is also known to chime from time to time. The difference between him and that group of belles is that I know that he is getting overstimulated when he starts ding donging. I once left a play date early with him and his brother in tow when he started to chime because I knew that things might go beyond my control and into the realm of a meltdown if we did not leave as soon as possible.

I explained quickly and the other moms understood. My little bell of a boy stopped ringing as soon as I removed him from the loud and rowdy play area at a popular fast food chain and shuffled him and his brother into our minivan. In hindsight, I am grateful he sounded his alarm in a signal of early warning instead of going right from calm into full meltdown mode.

Thursday, October 2, 2008

Healing: A Poem and a Personal Note

Healing by Julie Lorenzen

Healing from anything takes time
Each day can mean a step forward or a step backward
Almost everyone has something to heal from in their lifetime
Learning to cope with life's struggles is so important
It's imperative to realize that you are not alone
New people in your life that know what you're going through can give you a new perspective
Giving up should not be an option.

A Personal Note: I'm doing my best to recover from a bout of GERD otherwise known as acid reflux. Stress from being a busy and stressed-out mom (see list of side effects here) and drinking three cups of black coffee a day has caught up with me. On Sunday I was miserable standing, sitting and lying down. I'm better now but getting up from a reclining position is still painful.

However, a positive outlook and staying away from three mugs of black coffee a day will definitely help. So will taking this medicine and eating safe foods while staying away from coffee, chocolate and anything with tomato in it. In the meantime maybe I should go back and read my old post on stress management.

Anyway, it may be days before I post again. I have to rest as much as possible in between taking care of my family and home. In the meantime, I hope to heal a little more every day.

Wednesday, October 1, 2008

A Photo Essay and a Few Tips: School Picture Day

1. The pout.* It seems a little earlier than usual, but school picture day is tomorrow. Posed photographs can be difficult for my son with autism, though somehow we only had to have one retake since he started school five years ago. Anyway, I'm hoping that we will avoid two different expressions. The first one I'm hoping to avoid is the pout. That expression is usually captured when he is overwhelmed or caught in stubborn mood.

That photo above was taken at a place that was actually a popular spot for a photo opportunity at Cedar Point. He did want to try out the contraption, but didn't want to wait his turn. We were all getting cranky at that point in the day as we were getting tired. It was also hot and crowded when that photo was taken.


2. The "cheesy" smile. When he was a baby he used to smile naturally for photos, but someone (probably yours truly) at some point taught my guy to say cheese while he was getting his picture taken. We have three or four years worth of school photos featuring this type of smile. This photograph was taken a little more than two years ago while celebrating my son's eighth birthday.

As you can see (above) when he says cheese, the corners of his mouth turn down resulting in a rather awkward, upside down sort of smile. All I can say is although it is kind of cute now, it won't be so in a few years when he is older. Tomorrow, I'm hoping for...


3. The smile Grandma taught him. It never occurred to me to suggest an alternative to saying cheese to him. All I'd do was to tell him to not say cheese (before a photo was snapped) which is kind of like telling a bull not to charge a red cloth.

Fortunately, his grandma is a wise woman and an excellent photographer. I took this photograph, but she coaxed this type of smile out of him for the first time as seen here. In the photo above, my guy is about to get his hair cut in his grandparents' kitchen, which also serves as his grandpa's makeshift barbershop. Unfortunately my guy's hair is going to be a little long (as seen above) because we didn't have time to go to Ohio (where his grandpa, a barber, lives).

Five Quick Tips

1. Keep directions really simple. My child can handle only one direction at a time. The simpler the better.

2. Model the expectations for the child. Grandma modeled the smile she expected for her grandson and it worked!

3. If it helps, give the child plenty of advance notice. We usually need to tell our son exactly when
professional photos will be taken so that he will be emotionally prepared. Use visual aids or social stories if necessary. Go over expectations (like modeling the smile you'd like to see, for example.)

Fortunately my guy already knows about school picture day 2008. He saw it on the calendar in the school newsletter. Now if I can just remind him to use the smile seen in photo number three. We also let him choose the background color. He picked his favorite, which is why I'm featuring green on this post.

4. Pick a time where your child is usually at his or her best behavior. For example, try to avoid the hours of 3-5 p.m. if this is not a good time for your child. This is usually when many children become tired and cranky before recharging again.

5. Remember your child's sensory needs when dressing him or her for a photograph and also while posing him or her. For example, when my guy was two we dressed him up in a shirt, vest, tie and dress pants for a family photo when he was used to t-shirts and jeans. That may be one reason why our then little guy could not be consoled. His little face was all red and his mouth was wide open during his quite vocal resistance. Back then we thought we'd look back at the moment and smile when looking at that photo, but now I just look back and think 'aha.' If I'd only known then what I know now...

* Extra note: It's easier for him now at age ten, but my son used to have trouble posing in group shots. We'd end up with the pout a lot during group photo opportunities. He'd get a little overwhelmed because group shots are more crowded and also because more direction from the photographer is usually required.