Sunday, February 7, 2010

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.

31 comments:

Barb said...

Oh Martha, I'm glad you explained Michael's disability. Tears came as I read about the hard work it's taken for Michael to reach developmental milestones. Food, shelter, appropriate stimulation, and especially Love - luckily these needs are met by Michael's Family. How difficult it must be for parents with too little resources - financial but also physical and emotional. Thank you for sharing a bit of Michael's story with us.

This Is My Blog - fishing guy said...

Martha: I'm sure a hard story to tell, I'm glad it has been a learning process for him.

Sylvia K said...

Martha, thank you for this, and yes, I'm having trouble typing because of the tears. Such a difficult time for all of you and my heart aches for you. The good thing is that he has so much love and everything that can be done is/has been done. Barb is right about how difficult it is for parents and grandparents without the ability to help their kids and at least in that way you're all blessed. I know you will always be there for him, to love him, to help fill his life with the things that bring him happiness. Thank you again for sharing. Much love to you all.

Sylvia

Photo Cache said...

thank you for explaining it for us who have never encountered this on a close-up basis. more power to you and your family.

my entry is at http://ewok1993.wordpress.com

Pagan Sphinx said...

I'm so glad you did link this to My World. A family I know well have a 6 year old boy with Down's Syndrome. He has very low skills only uses a few words and many health problems. He also walked late - just around his third birthday. His family is also very loving, there are many problems between the parents. Sometimes when I look at Anthony, I think he may be sad about that, though he would have a hard time knowing what he is sad about or how to explain it.

I'm glad you showed us Michael. I like Jeopardy too...and cookie batter! :-)

With much appreciation for you post,
Gina

Natural Moments said...

I see that each of us has a specialty, a unique point of view that is usually not always seen or comprehended by most people. I am sure Michael has many gifts for the world that shines for those who have the ability to see and to feel on the higher spiritual levels.

Many tend to look at life through the lenses of society and western culture which is a very limiting point of view. Everything is perfect the way it is and the way it is is always changing from this moment to the next. We are here to feel and to broadcast those feelings in sensed and unsensed ways.

Like Michael, we are all special.

Stine in Ontario said...

Michael is indeed a special child and I believe you must be special too. Children like Michael touch many hearts, help the rest of us see more than we would have done without them.

Rajesh said...

Martha, your courage, love and affection will keep him going forward in life. He is fortunate to have you a his parent. Take care.

ρομπερτ said...

It's now close to a quarter past four in the morning and I'd like to offer you a deep bow in respect and gratefulness of your writing and existence as well.

Please have a wonderful Tuesday you all.

Ebie said...

I am glad you opened your heart and shared with us the joys and struggles about Michael. I hope that with this post, it will open awareness of this disorder. You are a woman of great strength.

Did he blow all ten candles at one shot?

P.S. We will be driving to Death Valley NP on Wed. Hope to get lots of photos. No posts for me this week.

Guy D said...

Wonderful look into Micheals life. I work with disabled people and I truly appreciate everything you said.

All the best to you and your family
Guy
Regina In Pictures

Rinkly Rimes said...

I taught a lttle boy who looked very much like your son. He needed an aid but he coped with school and he was making progress when I left the area. He, too, had supportive parents and it made all the difference. You showed great courage sharing your story.

Postcards from Wildwood said...

A very happy birthday to Michael and thank you for sharing his - and your - story.
Janice.

Diane AZ said...

Informative and touching post. Nice to learn some of the challenges and joys of caring for people with chromosome disorders. I like the scrap book pages you put together. :)

happilyretired said...

What a wonderful post about Michael and your lovely family. I appreciate you linking to My World and the information you've shared. My heart is full as I type this comment. Happy birthday to Michael and much love to you all!
Hugs and blessings,

Linda Reeder said...

Thank you for telling us Michael's story. I am always amazed at how famiies cope with the hard work and heartache that comes with having such a special needs child, and yet how, like you, they end up telling us just how "special" children like Michael are.
I had a sister with Downs Syndrome, back when the only choice was putting her in an institution. She had a good life there, but we never shared it.

Brit Gal Sarah said...

Martha thank you for sharing this with us, it was extremely touching and interesting. I had no idea about these things. How interesting that Michael loves Jeopardy, wouldn't you love to know why?!

Wolynski said...

Very touching. Amazing what love and care can do. Teabaggers? Sarah Palin has a special needs child herself. When people become rich, how quickly they forget what it is to struggle.

Lindy MacDuff said...

Wishing Michael a happy belated birthday. I hope he had a fun celebration. How interesting that he loves to watch Jeopardy! =D

By sharing Michael's story, you are educating many and bringing an important topic to light.

katney said...

Our Kate is similar in some ways--but with causes less clear. She has characteristics of several different disorders. She walked at about the same age as Michael, and does talk a bit. She is a delight to her brothers and all other family and friends. She'll be six this summer.

And she likes balloons.

Gaelyn said...

Martha, thank you for sharing Michael's story and explaining the disorder so well. My heart goes out to your family. It is obvious Michael is as special as any of us, just different. Love can conqueor all.

Mimi said...

Martha, as usual I have been too busy to keep up with your blog. It is the first week of March and I am only now reading your Michael birthday blog. Thank you for your dedication to our son and for all the help you gave us during his first few years. Most importantly, thank you for your ongoing help from afar and from nearby when you help to care for him so Eric and I can have time to be a married couple instead of always being parents. As before, I still look forward to your emails or "tidbit" phone calls when you have found something interesting to add to our knowledge file about Michael. We all miss you and Dad very much. --Mimi (Michael "Bear"'s mama)

Sallie (FullTime-Life) said...

Martha =- I wasn't yet reading your blog when you posted about your grandson and for some reason today I just noticed his picture on your sidebar. I just want to say how much I admire you and your son and d-i-l (? I hope I'm guessing right) and Michael himself! For all the work and the caring. And for the attitude of love and acceptance on all of your parts -- it just shines through in this post.

I just wanted to send you a virtual hug and not ignore this beautiful post, even though it is so late.

Annie said...

I came for Shadow Shots but stayed for Michael. His story put me in mind of a family that lived around the corner from us years ago. Their sweet little girl was born with a chromosome disorder as well and sadly they lost her at 3 months. But, during that time she was never apart from a pair of loving arms. How blessed Michael is to have the life he has and all due to the loving arms and hearts of so many.

clairz said...

I think that what you have written about Michael should be way more widely published, so that more people could understand how important social services can be. Reading about an individual and his family, rather than just a bunch of statistics, is so much more meaningful. Thank you for telling Michael's story.

Corner Gardener Sue said...

Hi Martha,
Thank you for your comment on my SkyWatch post.

My eyes landed on Michael's photo when I came to visit you. I clicked on his photo and got here to read about him. I'm glad he has you for his mom.

I am a paraeducator in a high school, working with special education students. One of our guys has to eat pureed food, too. He needs help getting the food on his spoon, but lifts it to his mouth on his own. He was adopted as an infant by a wonderful couple. When they found out the extent of his condition, they didn't want to bring a younger child in with him, and they also didn't want to risk bring an older one, so they decided to just raise this guy. From her communications, I can tell he is both a joy and a challenge. Well, he is that at school, too.

The Clip Cafe said...

Thank you for sharing this. He is a beautiful boy and I am happier today for having gained this knowledge and will now read more through the link. I wish I was better with words to convey how I feel.

CanadianGardenJoy said...

Martha this is such a personal heart wrenching story to share with us about your son, thank you : )
I'm so sorry for all of the stress and worry you and your family have gone through .. Michael (my son's middle name) is a very special boy who seems so appreciative of all you do for him. I thought it was so cute that he loves Jeopardy ! There must be something that really draws him out or comforts him.
I hope that your government doesn't go down the road of cutting programs and help to children and families in your position. It would be so wrong to abandon you when you need it the most.
My heart goes out to you and your family and your special son.
Joy

Rambling Woods said...

Martha..both my husband and I are retired special education teachers. How your family has helped Michael to reach his full potential with the best therapies available is what every parent of a special needs child has to do. Posting this helps people to see that we are all important and special even if we are different from the norm..whatever the norm is...Michael is happy and that is what is important....Michelle

JoAnn ( Scene Through My Eyes) said...

I read this with interest - and tears, some sad and some happy. My husband works with Developmentally Delayed Adults - some with simple diagnosis and some with multiple. It warms my heart to see a family who cares so much and expects much. So often Don's clients come to him with no training, no therapy and no real understanding of what life can give them, because their families couldn't be bothered to do the basic training needed to help out their special children, and they grow in to adults who are floundering.

Michael if very lucky to have his family to advocate for him and to love and support him. We can only hope that the clearer thinking heads will prevail (and we will take it to heart and do what we can) to overcome the insults that the tea party hurl out against those less fortunate than themselves.

Don has a little sign in his office - it says "Do something today for someone who cannot repay you"

Pat @ Mille Fiori Favoriti said...

I wanted to read more about your grandson Michael, and I'm glad I did. he sounds like a very wonderful boy and well loved and cared for by his parents and grandparents. You are giving him a happy life and I know his love is special to you all. Many blessings.