How To Change Chaos Into An Adventure

On January 5, I wrote that our water heater broke. Three areas in our house were damaged: the garage, kitchen, and bath room. We had to change our daily routine. We changed how we cooked and where we ate. We relocated many items from our pantry. In short, we had organized chaos, which autistic children do not like. As stated in a previous post, autistic children prefer a predictable routine.


I had to think creatively to ease the transition for Ryan, Nick, and Cameron. For meal times, I suggested we “picnic” on the living room floor. They thought that was really “cool”. They spread out towels on the carpet. Plastic forks and paper plates were the rage.

Since we had minimal cooking facilities, we ate via candlelight to complete the “rugged” atmosphere. Fire and flame were also “cool”. They each had a turn lighting the candles while I cringed with a water bucket in hand. All went well.

To find items that had to be moved from the pantry, we simply hunted. We never “looked” for an item; we hunted. Again, that really appealed to the primitive conditions of our house. Hunting was “cool”.

I had to think outside the box quickly to keep this whole disaster in check. If I could stay calm, the boys had a better chance of staying calm. This was critical. I simply switched from the pessimistic point of view to the optimistic point of view. I was very careful with my words and my tone.

So what started as a nightmare turned into a wonderful adventure.

Beach and Tactile Issues Part 2

Last week we had fun at the beach. Several years ago that was an impossibility. The boys simply could not have handled the sand.


Tactile = anything pertaining to the sense of touch


The tactile symptoms of autism can be unique, just as each individual, autistic or not, is unique. Ryan, Nick, and Cameron had various tactile issues. Ryan did not like to be touched. Nick could not handle clothing on his arms and legs, nor shoes on his feet. Cam banged his head on the floor. None of them could tolerate anything gooey or dirty on their skin. None of them could tolerate the feel of denim or anything metal, such as zippers. Really, the only material they could tolerate was cotton.

It was quite distressing to figure out what to do in each case.

Remember that Ryan was diagnosed with autism at age seven, Nick at age five, and Cam at age two. Since we did not know what we were dealing with, the earlier years for Ryan and Nick were really a struggle. We simply did not hug Ryan much. As I mentioned in an earlier blog post, Ryan would lean back to get out of a hug, and this usually resulted with a dent in a wall. Nick ran around in shorts and t-shirts. Cam usually wore a bike helmet to protect his head.

The real progress in their learning to live with “touch” did not start until we had Kelly, an occupational therapist. At first, I thought that meant sending my kids to work, as in to earn a paycheck. I quickly learned that occupational therapy related to the kids and what was a normal activity in which they should be able to participate.

The first, big step was shaving cream. It was easy to put on, and easy to wash off. If it got on clothes, it was easily washed out. Kelly put just a little bit on each hand of my boys. Oh, the screeching and hollering that bellowed from my kids, protesting that awful stuff. Poor Kelly.

She timed this activity. At first it was simply trying to get the kids to tolerate a minute of shaving cream on their hands. That took about a month to master. Of course, they still screeched and protested. Ryan even jumped around because he did not like it one bit.

Kelly rewarded them with spinning or swinging. That gave each boy some down time, time to recover.

Obviously, this issue is going to be a mini-series instead of two parts. Next time I’ll go into more detail and briefly cover other therapies like the use of horses, sensory room, sensory boards, etc.

photo credit: littledan77

I Want To Be In Hot Water!

Today I planned on writing about tactile issues. However, I’m going to write about flexibility with autistic children. This change is born out of necessity of life.

Today our water heater broke. No hot water means cold showers. Yea, right!
Improvise! With autistic children? Yea, right!
One of the “symptoms” of autism is a rigidness about schedules. My 13 year-old Nick and 15 year-old Ryan are no different. They prefer a non-changing schedule, so that they know what is coming next. We usually give them a two-minute warning when they have to stop the current activity, just like football. Even with a warning, there is no guarantee that these kids will adjust willingly (or unwillingly).
This morning Mike and I discovered the “no hot water” problem. I immediately started boiling water in a pan, micro-waving water in a bowl, and heating water in my hot pot from my college days. As the boys woke up, I told them the problem, how it would effect them, and how we would live for the day. I specifically said that the water heater broke, so there was no hot water. Then I said that they could wash their hair in the kitchen sink with my help. They could also take a sponge bath, hospital style. I also emphasized that “no shower” or “no hair washing” simply was not an option.
Nick had to repeat everything I said, but he still was ready to take a normal shower. I had to stop him and remind him that it would be a cold shower. He wanted to take a shower. I decided not to push the issue. In a minute I heard the shower go on. And off. He came out and opted for the hot water-sink option for washing his hair.
Ryan braved the cold shower, but only after I brought in bowls of hot water and left. He decided he could put wash-clothes in the hot water and use them to do his own sponge bath in the shower. Creative. He wanted to be completely independent (which I was totally grateful and thankful that was his wish).
Stuart and Cameron had no problem adjusting.
So here’s to the life of hot showers and boiling water. I also understand why plumbers do get paid well!

The Beach and Tactile Issues Part 1

They said they would not get wet. They did not want sand on them. They did not want to put on their bathing suits. I finally persuaded them to put on shorts. I brought towels just in case.

Thirty minutes later we arrived at the beach. Under protest all four of my boys removed their shoes and socks. We walked on the sand towards the water. We dumped our shoes where the tide would not get them wet. Then we continued to the beach.

There was a slight breeze. The sun made the sand warm. It’s January, and we’re taking the boys to the beach. Crazy?

I was in the water first. I let the water come up to my knees. Cold.

Cameron tested the water with his toes. Brrrr. Nick watched from where we dumped the shoes. Ryan walked into the water and immediately ran out. Stuart carefully ran toward the tides, embracing the waves.

Within ten minutes, the water has lured all of them in, Even Nick. There is just something about the beach, with the waves coming and going, that soothes even my autistic boys. We let the boys have space and did not push them at all. They each entered the water when they were ready. I think the rhythm of the sound really helps them feel at ease.

An hour later the boys were drenched. Keep in mind that our pool at home can be 80 degrees F, and that is “too cold”. However, the beach water was below 70 I think, and that was NOT too cold.

One wave hit Ryan, and he fell in the water. The sand on his face did freak him out. I could see the panic in his face, and I immediately wiped it off with my long sleeve. Then he was fine. The boys continued to play, run, and fall in the water. They collected sea shells. They even curled their toes in the sand.

All in all, I bet no one at the beach knew that I was dealing with two boys who could not stand to have dirt or mud on their hands. Ten years ago, this beach trip was only a fantasy. Through lots of tactile therapy, we can now go. The beach is fun!

In part 2 I will go through some steps as to how we overcame severe tactile issues.

Keeping Christmas Alive

When my kids were younger, I was concerned if they understood the real meaning of Christmas. With public schools taking every notion of spirituality out and stores marketing the “perfect” gift, I needed to emphasize the birth of Christ. Autistic kids are so literal, so I wanted to ensure MY values are stressed, not the school’s or retailer’s.

I started with simple steps. My kids understood the traditional rituals of a birthday party; they understood a birthday party included items like gifts, cake, candles, and singing. So on Christmas afternoon, we celebrated the birth of Christ like all other birthdays. We baked a cake together. We all blew out the candles and sang “Happy Birthday” to Jesus. This also helped with the Christmas “blues” that sometimes came. (All the presents were opened, now what?) We always enjoyed the birthday party, and the focus was on Baby Jesus.

As the boys grew older, we evolved into celebrating the twelve days of Christmas. We gave gifts every day from December 25 to January 6. Again, this was to emphasize that Christmas was not just about getting gifts in abundance. The focus had to remain on the Christ-child. We always said a small prayer of thanks before opening the gifts. Our gifts usually centered on family events, giving of our time to each other.

“Gifts” varied from a video rental to dinner out. Miniature golfing or bowling were winners as well. Once in a while, we gave a can of soda or made a whole pizza for each boy. Of course, we had gifts of little toys are games in the mix. The boys learned patience and were able to appreciate gifts as they were received instead of the “what should I open next” syndrome.

Christmas is a joyful season. Instead of ending on December 25, it’s only the beginning.

Reflections of Our Actions

We might never know the full impact of our actions or words. In this photo, the moon reflects the sun’s lights. Like the moon, we reflect the positive or negative actions we receive.

My 13 year-old son, Nick, was asked who did he want to be like when he grew up. His reply was, “I want to be like my brother, Michael.” I was shocked. So was Michael.

His big brother is now 25 and out of the house. Michael comes and takes his little brothers out to play ball or back to his house for a movie or video games. It’s a little time that has a big pay-off. Nick asks every Thursday whether or not Michael is coming over. Every Thursday I tell Nick to call him. Michael can’t come get Nick every Thursday. However, it has worked enough that Nick looks up to his brother as a role model.

When I told Michael that Nick wants to be like him, Michael had no idea that his time meant so much to Nick. It does.

We just never know when our actions will be priceless to someone else.

photo credit: thombo2

How To Balance Fun and Work…

…especially with boys at home for Christmas vacation.

I found that the boys just wanted to play all day. Nothing wrong with that except I got to do all the clean up. That lasted a day. I was not a slave, and they could not afford me as a maid!

I called the four boys into the kitchen for a chat. (They called it a lecture.) I asked how would they feel if one of them didn’t get a chance to play. They agreed that would not be good. I asked how they would feel if one of them had to cook, dust, etc. all day. They agreed that would be not be fair.

I then pointed out that was exactly the situation, just the one not playing was MOM. I made sure that they had “down” time. They needed to reciprocate; Mom needed down time too. They needed to decide how that was going to happen.

Through an amazing conversation, an idea evolved. One suggested that I just get up and go, meaning leave to relax. Tempting. Another recommended I join in their fun. Intriguing. A third suggestion was to check with Mom to see if she needed help before they had fun. Thoughtful.

The result of the discussion is that they decided to establish a new rule: Mom must be having fun before they can have fun. I could not argue with that.

Over the course of the next few days, I was bombarded with, “MOM, ARE YOU HAVING FUN?” They yelled it from the stairs. They knocked on my bedroom door. They sought me out like never before.

They were willing to help me do chores, everything from laundry to cooking the next meal. The workload was shared. It was an awesome turnaround.

We now all have fun doing the work and playing. Tonight is Christmas Eve, and everything that needed to be prepared is done. Everyone helped, and we really had fun doing it together.

There has never been a better Christmas gift, except for the Christmas Babe Himself.

Autistic Children and Socialization = Mental Marathon

Socializing for autistic children is a mental marathon. Think about running a marathon. You would train for several months, doing different types of training, like weight training and endurance training. After each session, you’re tired, or you should be if you have put forth 100% effort.


The same can be said for autistic kids and social situations. It demands so much effort and concentration that they can be mentally and physically tired. Think about what happens in a typical conversation between two people, such as eye contact, tone, gestures, and inflections. Then include the actual words being stated. Now think about what those two people have to tune out, such as outside noise and activities, distracting smells, and flickering or bright lights.

Neuro-typical or NT people do all this without thinking out it. Autistic children do not, and they have to be taught. It’s one step at a time. Add to the above scenario the fact that autistic children then have to process what was actually said, think of the response, and then articulate that response. If your child is like mine, he thinks in pictures. So now we’re talking about all of those steps above AND having to translate the words into pictures that he can understand. He then has to think of a response in pictures and translate those pictures into words.

Those brain cells are firing like crazy. Mental marathon.

Two years ago my Nick literally complained about his heart pumping so fast. He had talked to a peer for 10 minutes. He was exhausted, both physically and mentally. There is so much concentration and anxiety is social encounters, that it is bound to take a toll of some sort on these kids.

Onto Jacob and Meredith’s question about Andrew and Ryan (their sons Andrew and Ryan), which pertained to Andrew only socializing during school and not having play dates, and his brother Ryan has play dates frequently. Should Mom push to arrange social activities? (To see the actual question, go see the first comment under Dec. 17, 2009 blog entry.) First, I would recommend to see your two sons as totally different individuals with different talents and skills. Their strengths and weaknesses will differ, no matter if they both have autism or not. Second, I would push Andrew’s comfort zone, but slowly and in “baby steps”. Only you will be able to gage what that exactly means as you (parents) alone are the experts on your child. Maybe schedule an outing on a Saturday for 15- 30 minutes at a park. Physical activity takes a lot of stress of a social situation because the kids can engage in the same activity, maybe even side-by-side, without having to feel forced to talk.

When it came to my children, I asked the teachers to recommend students who might be a good “guide” for my kids. The teacher usually volunteered to talk with the parents about my kids and trying to set a play date. I then arranged to meet in a neutral place for a very short time. I found a neutral place was important so my kids couldn’t hide. The place also didn’t have known “triggers” such as a dog, cat, or smoke.
Most importantly, no matter how a social encounter ends, always praise your child for trying.


photo credit:bradleypjohnson

Autism Now 1 in 100

Copy and paste to see video if necessary. Autism is on the rise. (REALLY?) When my oldest son was born in 1984, only 1 in 10,000 had autism. Now it is 1 in 100.
Also, they are reporting that it is not just genetics, but environment. (REALLY?) In our extended family, there is no autism. Therefore, autism can not be purely a genetic mishap. In our immediate family, all four of our younger sons had disabilities related to autism. We stopped all shots with our youngest after 13 months. He had intense therapies and early intervention programs. We, as parents, chose what programs and therapies he’d follow. He has recovered and is in a mainstream classroom with no aide.
With our other children, we chose to take them off the prescription drugs after two years. We saw that we were only treating the symptoms and not the problems. It was only after following our hearts. doing our own research, and implementing our own programs that we starting to see glimpses of potential.
What will happen if the government takes over our health care and demands that our children receive vaccines or must attend certain programs? Autism will sky-rocket, and these children’s potential will not be discovered.
I do want to point out that I am not anti-vaccine. I am pro-vaccine with a plan. Do one shot at a time and see if there is a side effect. Insist on thimerosal-free shots, which still has thimerosal in it, but in smaller quantities. There are other ideas I could list, but it is quite extensive.
How are these children going to function? How is our society going to welcome them? The impact on families is unfathomable. My heart cries.

Marriage and Autism: It Is About Acceptance

A few weeks ago good friends of ours announced that they were getting a divorce. This news hit me hard. We’ve known them for years, and they seemed happy… This prompted me to ask my husband about his thoughts about their divorce. “Marriage is about acceptance, not compromise,” Mike simply stated. “Compromise leads to giving in; consequently, negative feelings begin. Resentment grows until someone breaks.”


Hold that thought.

There are conflicting ideas about divorce and married couples dealing with autistic children. When our boys were first diagnosed eight years ago, I read an article on that topic. It seemed that the divorce rate was about 52% if there was one autistic child in the family. That rate rose to about 90% if there were two autistic children. I stopped reading before I saw the divorce rate for a family with three or more autistic children. I did not want to know. At that time we had three autistic boys.

Back to that thought.

About five months ago a situation presented itself that would change our boys’ daily schedule. After much discussion, I could see advantages and disadvantages to this new situation. I totally respected my husband’s insight. I did not completely agree with him, but I was willing to try.

Compromise or acceptance? Not sure yet.

That new situation is now over, but not without some weariness along the way. WHEW. Upon reflection, one of our autistic sons is thriving in a way that I could not imagine. Nick has connected socially with more people, and that is not bad for him. Had we kept to our original schedule, he would not have developed these skills as quickly. There were definitely negative aspects, but I think that these social skills will outweigh any negativity in the long run.

I have to admit that I had compromised. Could I have ever accepted that new situation? I don’t know. At this point, I don’t think it matters. What does matter is that Mike and I were able to respect each other in our differing opinions, recognize when we (really, when I) needed space, and listen when we needed to talk. Sometimes we missed cues about each other during the last five months. We’re not perfect. However, we are in this together. We have accepted that, and we are looking forward to the new opportunities for the boys.

In a way, I can equate acceptance with love.

photo credit:apdk