A Strange Vehicle and a Visit With Michael

We made the 400 mile trek to Los Angeles recently to watch grandson Michael while his parent got away for a long weekend.  On the trip home we saw an unusual vehicle up ahead.

What on Earth?

It looked more like a boat than a car.

Was it an amphibious vehicle?

It's hard to get good images on the freeway on a gray day.

The only way to get a shot of the front was in the rear view mirror.

When we got home I saw the word "Deco" and that looked like an "r" at the end.  I searched "Decoliner" (how did we get by before google?).

Not an amphibious vehicle but a hand built motorhome.  You can read about it here.  I guess those who watch Leno already know about this but I am not a fan of late night or any other TV.

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Our visit with Michael

 No pictures of Michael this trip, it's hard to take a picture of someone who is holding your hand.  We did have a nice visit.  He is so unique that it gives me a lot to think about.

Communication is what this visit brings to mind and the different kind of intelligence.  Michael is non-verbal and it is hard to know just how much language he understands, bath, eat, night night, this much I'm sure he knows.

There are ways to communicate other than with words.  He understands that the TV only works if an adult holds the remote.  If he wants to watch he brings someone the remote.  He knows that the crack in the side of a car is where the door opens so he will work his fingers into that crack indicating he wants to go for a drive.

I brought out a simple puzzle, just three flat shapes that must be placed in a similar indentation.  He did it a couple of times, indicating he knows how to do it.  Then he began to put the square in the triangle or stack the pieces, his way of saying "I did it, I don't want to do it again".  Just turning 12 he wants to be his own person.

 He may be asserting his independence but he is still very cooperative.  He knows his routine and helps as 

 much as he is able.  He pushes his arms and legs into clothes to help in dressing and pulls them out when it is time to undress.  He hands his leg braces and shoes in the proper order to whoever is putting them on.  He even hands toothbrush and tooth paste when it is time to get his teeth brushed even though he doesn't care for the process.  He has his limits, though, he loves his bath and goes limp when it is time to get out, no cooperation there.  Like very young children he is fascinated by the texture of food and wants to put his hand in the dish. 

See more of our world at Our World, Tuesday, hosted for us by Arija, Gattina, Lady Fi, Sylvia and Sandy.

Michael's Staycation

While Michael's Mom and Dad enjoyed a much needed vacation in Seattle, Michael had a "staycation" with Grandma and Grandpa.

First we planned a visit to the beach.  Michael likes the water and the beach but as it turned out, we hadn't picked the best day.  In spite of the heat at his home, the weather at Zuma Beach was cool and breezy.  Not only that but the unusually dangerous surf made it impossible to go near the water.
I had learned that many state and local beaches have sand wheelchairs to borrow so we tried it out.  They work better if you pull rather than push them across the sand.  It is nice to know they are available.

The Los Angeles area has many adaptive playgrounds, built with help from Shane's Inspiration.
These playgrounds are for all children but have features making them accessible to children with disabilities.  There are several not far from Michael's home and we took him to one to play.

Grandpa snapped a picture as he waited below the slide for Michael.

He likes the swing.  The adaptive swings are popular with all children and much safer than the traditional swings.
I have noticed that many parks no longer have swings and that is too bad.  The motion helps to develop the inner ear and balance.  It was a regular part of Michael's therapy sessions.

He wasn't sure what to make of the mister.  It was cooling on a hot day but it was a new experience.  Some times it takes a little while for him to process something new.

Since it was still hot, on Sunday we looked for something inside with air conditioning.  We went to the mall.
Malls sure have changed!  Part shopping, part dining and part theme park.
A very nice attendant helped me to lift Michael onto the carrousel.  Just as with the swing, he enjoyed the motion.  Grandma made sure he didn't fall.










Not ready to go home we decided to find a place to sit and "people watch".  Grandpa and I were reminded of what a wonderful country this is.  People of many different cultures were enjoying the mall.  We are not perfect but compared to many other parts of the world where people can be attacked because of how they dress or how they look, we do pretty good.
We have come a long way when it comes to the disabled.  Thanks to the Americans with Disabilities act, we can take Michael out for the day without the roadblocks of an earlier time.  Sometimes people wonder, will ask about him but no one suggests that he should not be out enjoying life.

Like all good things, Michael's staycation came to an end.  Summer was over and it was time for him to go back to school.  His parents tell me that Michael's current school is to be closed just as the last one was.  Los Angeles schools are phasing out special need schools.  While mainstreaming may be good for some students I am not sure that it is the right choice for a child as vulnerable as Michael.





See more of our wonderful world at Our World, Tuesday hosted by Arija,  Gattina, Lady Fi, Sylvia and Sandy.

Michael Learns a New Skill

Michael's Mom took these pictures with her cell phones.  She's very good at keeping us up on what is new with Michael.

Michael doesn't chew very well so all of his food is pureed to protect him from choking.

 Whenever he would hear the sound of the food processor he would get excited and get in the way.

 His mom found a solution to the problem.  Now Michael has learned to help.  He pushes the buttons on the processor and is quite pleased with himself; and he gets his food faster since he isn't impeding the process.

Michael likes bed time, he is always put to bed with a song.  Dad sings a silly song, Mom sings a sweet, tuneful song and when Grandma puts him to bed, he gets an off key song.  It isn't unusual for him to be the one to decide it is bedtime. He will take an adult by the hand and lead them to his bed.

See more of the world at That's My World, Tuesday; hosted for us by Klaus, Sandy, Wren, and Sylvia.

Aquarium of the Pacific

What better spot of a watery meme than an aquarium?

 The day after Christmas we all went to the Aquarium of the Pacific in Long Beach.

 There were fish, of course.

 Many varieties of beautiful anemones

 Jelly fish

 I love watching them float through the water

 They had touching pools to feel the fish

Grandson Michael seemed to enjoy the aquarium and so did the rest of us.  We found the exhibits to be both attractive and informative.  

A perfect end to a wonderful Christmas weekend and the only rain was

Christmas night!  

Find more watery sites at Watery Wednesday, hosted for us by 2sweetnsaxy

Michael goes to San Diego

One of the many challenges of caring for a child like Michael is finding things that will interest him.  Like all of us, he eventually tires of games, toys and activities he has mastered while new things are difficult to learn and understand.  He can be overwhelmed by too much stimuli.

 We went down to San Diego for a weekend, a bit of vacation for his parents and a chance for Grandma and Grandpa to spend time with Michael and his parents.

We stopped to picnic at the beach along the way.  Michael seemed to think this was pretty good.

 We went to San Diego Zoo.  He enjoyed the food his mom had brought for him and he likes riding in his chair.

 Playing with mom was more fun than climbing on the many sculptures as other kids were doing.

The animals, not much interest there.  We weren't too surprised but if we don't keep trying new things or revisiting old ones we'll never know what might interest him.

Traveling with Michael is a lot of work.  His mom prepared food to take with us and brought a blender so she could puree food we got on the trip.  He slept on a blow up bed we had brought along with waterproof sheets.  We had his wheelchair so that we could walk and sight see but had him walk as much as he could.

Families of disabled children need all the help and support that they can get.  With the new congress I worry that funding will be cut to programs for the disabled.  Are we losing our compassion, our progressive spirit?  Are business interests and the accumulation of more and more wealth all the American people care about?  I am very dissapointed in the direction our world is headed.

See more world views at That's My World Tuesday, hosted for us by Klaus, Sandy, Wren, Fishing Guy and Sylvia.

Michael--What Went Wrong

I thought that some of my regular readers might wonder about our grandson Michael's problems, how he came to be disabled. Since he just turned 10 this week, I thought this an appropriate time to tell you. Most of us know some of the causes of mental retardation; birth trauma, illness of the mother, Down syndrome. In Michael’s case it is none of these though Down syndrome is the closest.
Long before Michael’s birth I had read an article about chromosome disorders. It seems that while Down syndrome is the most common chromosome disorder it is far from being the only one. In most cases a damaged chromosome results in an early miscarriage but in the case of the smallest, chromosome 21, the fetus usually survives.

With Down syndrome each cell has three copies of chromosome 21 instead of two. In Michael's case he has a ring chromosome. A ring is caused when the ends break off, often losing genetic material and the chromosome circles around and forms a ring. This is unstable and in Michael’s case some of the rings broke open causing further loss of genetic information. If this weren’t complicated enough, some of his cells have two copies of the ring and some only have the normal chromosome, trisomy and monosomy respectively.

It was known by the third trimester of pregnancy that something was wrong but the doctors didn’t know what. Genetic testing was done while he was still in the hospital and so was an MRI. The MRI showed abnormal brain development and he was referred to the local Regional Center when he left the hospital. In California the Regional Centers are the agencies that provide services to children who are suspected of having developmental disabilities. A few weeks later the genetic tests came back but no one could give us a prognosis. They said there would be developmental delays but they didn’t know how severe.
Michael received therapy almost daily. We observed the therapists and worked with him ourselves. It was 18 months before he learned to crawl. The poor kid, we were so excited that we kept moving his toy just so we could see him go get it. He was 33 months when he learned to walk. His therapists had just about given up hope. Sometimes he would get fed up and try to leave a therapy session or he would stand in the corner. I felt so bad, were we working him too hard?

His balance and coordination are poor, he falls often. He doesn’t speak, he doesn’t use a toilet. He had seizures for several years starting when he was about two but they have been controlled for several years. He is a sweet, gentle soul who makes few demands; a full sippy cup, three meals a day (pureed and tasty, please), a hand to hold, a warm bath. He is pretty good at indicating which of these he wants. I almost forgot, he has a button that when pushed says "Jeopardy, Please". For some reason he likes to watch Jeopardy. He seems to get satisfaction for those things he can do for himself, like feeding. I now know his hard work was worth it.

His family loves him, protects him, and tries to give him the best quality of life we can. I know that not all disabled children are as fortunate and my heart cries out for them. I worry; in a world of tea party advocates will these children and their families be left to fend for themselves? Who protects the Michaels of the world when they don’t have families that can do it?

If you would like more information on chromosome disorders you can check out Chromosome Disorder Outreach. It is a support group of parent's of children with these disorders and you will be amazed at the number there are.
The first two pictures are pages of a scrapbook I made of Michael's early years. A digital craft that can be a lot of fun.

Michael is an important part of my world so I have linked it to My World, a meme hosted by Klaus, Sandy, Wren, Fishing Guy and Sylvia.

Michael's World

I thought it was time to leave the natural world for a bit and revisit Michael's world.

Before Michael came into our lives I had little knowledge of the world of "special needs"children.
People like Michael are safest living at home with loving family members, people who know him well and can interpret from his behavior if something is wrong.

Michael goes to a special school and has an after school caregiver until his parents return from work. But, he needs help with skills they do not teach in school, skills that make it easier for his family to care for him, for this he has a special therapist.

Shannon is a very patient young women who helps him learn "adaptive skills". She helps him learn to follow directions.
She teaches him to use an assistive communication device to ask for what he needs.
She assists him in feeding helping him to impove technique. I can attest, there is a lot of room for improvement. When school and therapy are over, he likes to kick back and relax, just like anyone else.
He concentrates on putting the toy together. He doesn't see why Grandma is busy with her camera and not holding his hand.
"I want to go for a walk, forget the photo shoot" at least I think that is what he would say if he could speak.

I had hoped to take him to the accesable playground and Griffith Park but it was 100 degrees and he was not feeling well so we all stayed home.

We enjoyed our weekend with Michael and his parents enjoyed their weekend away. Generous child that he is, he shared his cold with Grandma, it was worth it to spend time with this special child.

To view more worlds click the patch at right.
This meme is hosted by Klaus, Sandy, Wren, Fishing Guy and Louise

Michael does learn

Our grandson Michael is part of our world. Michael is nine and he is retarded--severe to profound.
There, I used the "R" word, I know it's not politically correct but you know what I mean. Or do you? People often think that it means Michael will never learn anything, never progress but that's not true. He does progress but very slowly and with a lot of help from family, teachers and therapists.

Michael needs to wear these DAFOs to help support his feet and ankles. They make him more stable when he walks. Some thought that he would never walk and he was almost 3 when he did; 18 months when he learned to crawl.

Michael used to pull his foot away when you put the DAFO on. Now he not only pushes his foot in, he hands you the tongue that goes inside and then the shoe.

Michael and Grandma were playing side by side, each with a different toy. If Grandma stopped he would prompt me to start again by handing me the toy or just touching my hand. Michael doesn't speak but this is one of the ways he communicates. If you pay attention you find that he is quite good at communicating.

He likes his bath. If he thinks it's time he will take you by the hand and lead you into the bathroom. Even if it isn't any where near bath time he might try to con you into it. If he is hungry he will find a an empty sippy cup and hand it to you. He might open the dishwasher to find one. He is pretty smart when it comes to getting his needs met. Of course it helps to have a family that loves him and is determined that he have as pleasant a life as possible.

Michael has learned to go safely down the stairs. I will never forget the day when he was three and he crawled up the stairs at my house. He hadn't been out of sight for more than a few minutes when I went looking for him. I saw him at the top of the stairs and raced up just as he stepped off, tumbling down. He wasn't seriously hurt but you better believe there was a safety gate installed the next day.

Michael likes to go for walks. He walks slowly and awkwardly, but he walks.

For another story about Michael click here.

To visit more worlds click here.

Getting Michael off to school

It is quite a ballet Michael's parents do to get him off to school each day. Dad gives him a bath while Mom prepares breakfast and lunch to go with him. His food has to be pureed and packed up along with bibs, diapers and meds.
Michael's school specializes in special needs students with dedicated teaches, aides and medical professionals. These people understand the needs of their very special students. But the Los Angeles school district would like to close this very special school. They prefer to put their money and effort into magnet schools for the gifted. The disabled, they seem to feel, should be shut away and not seen. In fact Michael, at other schools, has had teachers who thought he should be put in a corner and left to fend for himself. Michael does learn but he needs help. While I certainly agree that gifted and normally developing children need a good education, they have greater personal resources than do children like Michael.

Children like Michael need patient, creative teachers willing to find activities to spark their interest. They need patient repetition to learn new tasks. They need patient observers willing to interpret their attempts to communicate their needs. Otherwise they wither away, going into a steady decline.

This is one grandma's rant. One grandma in a larger family that loves and is devoted to their special needs child. One family that thinks their child is just as important as any other. One family that thinks special ed schools are just as important as special music schools, special science schools or any other special school.

There are many familys like ours.