Let There Be Peace On Earth - Down syndrome

Intersection

People with Down syndrome have a reputation for being "huggy" and very affectionate. People with autism are sometimes described as having repetitive or obsessive behavior. Over the last few years there have been people who have come into our lives who wonder if, besides having Down syndrome, Kellen could also be on the autism spectrum?

I've thought about this question often and have even asked for some opinions from others who know Kellen...and know autism. I have gotten various opinions, but have finally come to the conclusion that it doesn't really matter to me. I'm not interested in giving him another label...unless it will help him, or help people understand him. What I have noticed is that when he is anxious or under stress, he acts much more like a person who has autism then he does a person with Down syndrome. When he is not anxious or stressed, I don't see "autism" at all. Since I know that autism doesn't "come and go"...I don't really think he has autism at all, but rather autistic-like behaviors.

We had a big graduation/welcome back from Paris party for DQ this weekend. Sweet Husband's ninety-year-old aunt joined us. She has a special connection with Kellen and it is fun to see them interact. She has a wild-streak herself and I think she enjoys a maverick when she sees one. The party was a lot of stimulation for Kellen, but he did okay as long as we kept an eye on him and gave him a break in his room as needed.

At one point during the party she and Kellen were sitting together at the picnic table. Kellen had his arm around her and was watching her eat. He gave her a nice peck on her head and she thanked him. Then, he started kissing her head over and over again. It became obsessive and he wouldn't stop despite my attempts to redirect him. He loves to take pictures and I offered to let him use my camera...but no...he was locked in to this repetitive kissing. The funny thing was...she seemed to be enjoying it.


Later, I was relaying this incident to an acquaintance of mine who hasn't met Kellen. She has several grandchildren on the autism spectrum and so has lots of experience in that arena. She often asks about Kellen and so she has heard me tell stories which describe his personality. When I told her about the Obsessive Kissing Episode, she responded, "Your son is really a mixed bag...isn't he?"

It got me thinking...yes...that is the perfect way to describe him. He is a mixed bag. The Obsessive Kissing Episode was a great example of the intersection where Down syndrome and autism meet.

Highway

On Sunday I was driving up to our community swim club to water the planters and hanging baskets. I wasn't concentrating very well as I was thinking about leaving my son Kellen home alone...hoping he would be just fine as it would only be for about a half an hour. I was driving up the windy highway just outside of my neighborhood. As I rounded a corner just a little too close to the shoulder, I came upon you. We looked at each other in surprise. You, because I probably scared you coming around the corner like that...too close for comfort. Me, because I saw that you had Down syndrome.

Down syndrome...like my son. You looked like you might have been carrying a Bible. It was Sunday morning, so maybe you were walking home from church? If so, the closest church is quite a way up the road. Maybe you walk down the highway every Sunday..but this was only the second time our paths have crossed. I think I remember you walking further down the highway on another Sunday morning. I remember thinking it odd that I hadn't see you before and interesting that you were walking along the highway by yourself with a Bible under your arm on a Sunday morning.

Forgive me for my surprise. Of course people "like you" are able to do all kinds of independent...and even slightly dangerous things, like walk along the shoulder of a highway. I just find it ironic that not too many years ago my son who shares your diagnosis used to escape from our house when we weren't looking and ride his tricycle out onto that highway. His guardian angel watched over him and kept him safe. A concerned person would stop their car and call the police. The police would come and see his identification bracelet and bring him home. Home...where I would be frantic wondering where he'd gone. He had such an independent spirit. I think he knew exactly where he wanted to go and saw no reason why he couldn't get there on his own.

Maybe you are like that too. You know where you are going on Sunday morning. The lack of a sidewalk...or your own wheels doesn't stop you. I'm sorry if I scared you a little bit by coming around the corner a little too close to the shoulder. It crossed my mind how horrible it would have been if I had accidentally run into you. Me who has a son at home who also has Down syndrome. A son who is not able to walk around town independently...especially not along a highway. Again, forgive me for my surprise, but I do find that amazing. Amazing and inspiring.

...and I'm glad you have a guardian angel too.

Connections

Have you ever noticed that people are everywhere?
Not just people, but people who want to connect?

Kellen and I have been trying out a couple of new places around town. Smaller, local businesses where people seem friendlier. It's part of Operation: Expand Kellen's World.

Today we walked into a small shop to get a smoothie and before we even got to the counter, a young woman who worked there asked me if Kellen had "Downs." When I said yes, she told me that her 16-year-old brother has Down syndrome. We got into a conversation about her brother and about Kellen, and another customer overheard us and asked whether I knew a couple of her employees at her daycare business who also have disabilities. They are only a couple of years older than Kellen and I do happen to know them, so she and I also had a nice conversation. She was telling me how much the daycare kids love these young women.

I left the shop knowing we had just made a couple of new acquaintances.

Could the 18-year-old behind the counter be a companion or a potential respite provider for Kellen?

Would the woman who owns the daycare be a possible employer someday?

Who knows.
Time will tell.
In the meantime it's great to get out in our community and practice networking. Someday it may come in handy.

World Down Syndrome Day

Today is World Down Syndrome Day. People with Down syndrome have an extra (3) 21st chromosome...so the date 3-21 was selected two years ago as a day to celebrate people with Down syndrome and to promote acceptance of diversity.

The theme this year is Aim High Enough.

January 1991

I am 29 years old and I'm flat on my back on an operating table. My unborn son is in fetal distress and I'm terrified. I'm about to have my second c-section. I tell the anesthesiologist that all I want to hear after my son is born is that he is okay. The only thing is, after he is born they don't say anything. They whisk him away to the corner of the room...and they don't tell me anything. After a period of time, I ask my husband to leave my side and go check on him. When he comes back, instead of reassuring me, all he can say is "ummm...they are working on him."

Several minutes later the pediatrician on call comes over to the operating table and kneels down so that his face is level with my own. He says quietly, "We believe your son has a chromosomal abnormality...we think he may have Down syndrome."

I feel as if I am falling through a long black tunnel. There is no ground underneath me. I am shocked. I feel extremely vulnerable. I don't know what to feel. I don't know what this means.

A little later he tells me that my son has a heart defect and that he will need to go to Children's Hospital right away. He is whisked by me on the way out of the operating room. My first thought as I see my son for the first time is, "yes, he looks like he has Down syndrome." I don't know what to think. I am still in shock and I feel detached from him. Even though I know he just came from my body, he doesn't feel like mine.

A week or two later, he is still in the hospital. By then he has also been diagnosed with an intestinal disorder and has already had a surgery or two. They send a geneticist to come and talk with me. I don't know why...I've just had a tubal ligation as we have decided two c-sections are enough. She takes me to a little conference room.

My son is so tiny, I feel so vulnerable and I still don't know how to think about him or his disability. This feels like "tragedy." The geneticist is strong, sure of herself and very articulate. You could even call her strident. Something she says stands out to me, "Your son will not live with you the rest of your life." Finally I know how to think...my son will be able.

Her comment set the stage for how we would raise him.

Galloping Toward the Milestones

Several years ago I had a small gathering of families over for brunch at my house. Everyone in attendance had a new baby with Down syndrome and I thought it would be a great way for some of the families to get to know each other.

As it usually does with new families, the conversation turned to early intervention. Babies and toddlers under the age of three who have (or are at risk for) developmental delays can receive physical, occupational, speech and feeding therapies to help them reach their milestones. These services are now provided in homes and daycares, but back when this conversation took place the services were provided in places called birth to three centers, early intervention centers, developmental centers or in more of a clinical setting.

During the conversation we started talking about the local centers and where they were located.

One of the moms piped up: Isn't there a center in Auburn?

Me: No, there isn't one in Auburn, but there are two in cities near by.

New Mom: But...I thought I saw a sign for a center in Auburn.

Me: A sign?

New Mom: Yes, a sign on the side of the freeway. I drive by it all the time.

Me: Hmmm...what did the sign say?

New Mom: It said something with the word Downs in it...

It takes a little while, but finally it dawns on me:
Me: Do you mean a sign for...Emerald Downs? Emerald Downs is a...racetrack...you know...for horse racing.

New Mom: A racetrack? Oh...never mind.

We spent the rest of the morning laughing as we pictured our kids receiving their services at the racetrack.

What to say....

What to say to a friend or family member who finds out her baby will be born with Down syndrome:

1. Congratulations

2. We can't wait to meet her/him

3. We will be here for you

4. You will be great parents

5. Congratulations!

Accommodations For All

Friday night was Mom's Night Out with the Chick Posse. We all have kids with Down syndrome and meet for dinner at a different restaurant on the last Friday of every month. Once again I discovered that I had forgotten my reading glasses. I am absolutely lost without them, especially at a dimly lit restaurant. Sometimes I can read the names of the dishes, but usually the descriptions are typed in way too small of a font. I either take my chances or have someone read me the menu. This time I asked if anyone had a pair of reading glasses I could borrow. This crowd was all under forty and there was not a pair of reading glasses to be found.

Our server overheard me asking for glasses and asked if I wanted the braille/large print menu. She brought it to me and it was fantastic! The print was very large and I had no problems reading it without asking for help. What a terrific accomodation for restaurant guests like me.

I was reminded of a blog post I wrote back in January about Universal Design. What is good for people with disabilities is good for all of us!

By the way, Kellen got "caught" reading this weekend at Where There's A Will. Check it out and send in a picture of your child reading as well.

Compliance, no. Cooperation, yes!

I read Dave's blog this morning and I haven't stopped cheering. This is a must read for anyone raising a child with Down syndrome or any other disability. It is an unfortunate fact that our kids are vulnerable and they need to be allowed to say no, and yes, even be non-compliant in order to protect themselves.

This was something I learned when Kellen was still a toddler. I'm not sure where or exactly when, but I'm so glad I did. I remember clearly sitting in a preschool IEP meeting when Kellen was four or five years old. The teacher wanted to add a goal that Kellen would follow the directions given to him. She added that he was becoming quite non-compliant. That was all I had to hear. I calmly explained to her that putting a goal written like that in Kellen's IEP would not serve his best interest in the long-run and could even be dangerous. Compliance wasn't the goal...cooperation was. I don't think I could have shocked her more.

Just yesterday we drove Kellen to his grandmother's house so that they could spend some time together while Sweet Husband and I got a break. When we arrived at her house, Kellen wouldn't get out of the car. We were patient and waited several minutes. We didn't force him to comply. Finally he said he wanted to go home. His grandmother drove him back home and he promptly went to bed and slept the rest of the day. He was sick. Not getting out of the car was letting us know.

Kellen is sixteen and able to advocate for himself. If not with his voice, then with his feet. We celebrate independence day, every day.

Stranger Than Fiction

I was reading a fiction book the other day for my book club and ran across a passage where one of the main characters was retelling a story from her childhood. She had seen a boy with a developmental disability do something inappropriate and she went home and told her dad. She told her dad because she knew it would get his attention and she wanted his attention. What she failed to tell her dad was that the boy who had done the inappropriate thing had a cognitive disability. The father got very angry and went to the boys house to chew out his parents.

It was strange reading that passage because it brought back a memory of something very similar which happened to us a couple of years ago. Kellen arrived home on the school bus and about fifteen minutes later there was a knock on our door. Sweet Husband answered the door only to find a very angry African American woman standing there. She started to go on and on about how our son had "spit" on her daughter at school and yada, yada, yada. Dear Husband let her go on for awhile and then called Kellen to the door so that she could see that he had Down syndrome. He also explained that Kellen didn't know how to spit quite yet and asked if he may have been blowing raspberries. The mom was somewhat embarrassed and apologized and went back home.

I was really upset when I got home and heard about this. I felt very violated in my own home. How did she know where we lived? Why would she come and knock on our door instead of just asking her child's teacher what had happened at school? What was the big deal about blowing raspberries? Why did she jump to such a huge conclusion instead of finding out more information from her daughter? What would have happened if our son's disability had been an "invisible" one?

Awareness Can Build a Family

A message from Kathryn Soper:

Here's a fantastic way to celebrate freedom: Vote in the American Express Members Project. Fifty community service proposals are in the running to receive $5 million in funding from AmEx. The current top runner is a Down syndrome awareness proposal initiated by the National Down Syndrome Congress, called "Awareness Can Build A Family." Voting is now underway to select the top 25 proposals; there will be two more rounds of voting, and the winning proposal will be announced on August 7.

Here's the Down syndrome proposal:

Awareness Can Build a Family


Yearly, thousands of women are tested to determine if the child they carry has Down syndrome. A positive answer often portrays a bleak future in which their child will impose terrible burdens and dreams die.



Many medical professionals have scant knowledge of Down syndrome and are unable to comfort or educate.



Their messages tag people with Down syndrome as having no value, implying there is no place for them in our world.



The tragic result: an astonishing 90% of pregnancies involving diagnosis of Down syndrome are terminated.

In fact, there is much to celebrate. Children with Down syndrome excel in school, participating in sports and graduating. As adults they live independent, rewarding lives. Ask a parent - you will hear of joy, fulfillment.


My Members Project, "Awareness Can Build a Family," would use public service television, ads, booklets and more to tell that people with Down syndrome are more like all of us than not and are of priceless value.


If you agree with all of that, please vote as soon as possible - the first round closes July 15, 2007



What this proposal doesn't mention is that this year, 4 million American women will be offered first-trimester prenatal testing for Down syndrome, and the majority of them will not receive adequate accompanying education about Down syndrome.


If the NDSC's proposal wins the competition, resources like GIFTS will be widely distributed throughout the nation. Imagine this: a copy of the book in every OB/GYN office! It's a very real possibility.

You need to be an AmEx member to vote. Please consider signing up for a card, as I did, so that you can participate. Online application takes one minute, and there's no fee.

And what does this have to do with freedom? By voting, you use your power as a citizen to determine how a big chunk of American change is spent. And by choosing "Awareness Can Build A Family," you make it possible for American families to truly exercise their freedom of choice. How so?

Any thinking person understands that accurate, current, balanced information is a vital component of decision making. Our nation has determined that women are free to choose whether to terminate pregnancy, but currently the millions of women receiving DS testing lack the education needed to make an informed choice. With with $5 million in funds, the NDSC can help ensure that women choose with the power born of knowledge.

And you can help make that happen. Vote today! And if you're not a member yet, sign up.

Family Stories (part two)

When the Wan family lived in China, they were fined the equivalent of several thousand dollars when Mrs. Wan became pregnant with their second child. Thinking that she may be fined again, she spent the next few months doing her best to either hide her growing belly or secluded in her house. When their baby boy was born with Down syndrome, their fear grew. They did not seek any medical care for him until they were finally able to emigrate to the U.S. There Vic was able to have his heart defect repaired and the family was able to begin a new life in a new country.

I first met Vic and his mother in our local grocery store when Vic was about 7 years old. It was Superbowl Sunday and Sweet Husband and I stopped into the store to buy some snacks to eat during the game. I noticed Vic riding in the shopping cart and I could tell that he had Down syndrome. I approached his mom and we did our best to communicate despite our language differences. I didn't have Kellen with me, but I showed her his picture that I carry in my wallet. We were able to make a connection as parents who both had sons with Down syndrome. I felt bad that I had no way to communicate to her that I work for an agency which supports parents of kids with special needs.

Several months later, by coincidence, I learned that she was referred to our agency as we have a multicultural outreach program. I offered to go with my co-worker who was planning on doing a home visit. That's when I was able to hear Mrs. Wan's compelling story and again meet her beautiful son. What a difference it made to have my co-worker there to interpret for us! I ended up going to her son's IEP meeting with her a few weeks later. I thought things had gone fairly well, but I found out the next day that Mrs. Wan had not understood much of what went on during the meeting because the person who was acting as the interpreter actually spoke Mandarin Chinese and not Cantonese. Mrs. Wan had not let on during the meeting that she wasn't understanding and I felt really bad that she hadn't been able to participate in the meeting as she had wanted to.

The next Spring, when IEP time rolled around again, the same thing happened! The school district had contracted with a math teacher to come to the meeting and interpret and she did not speak the same dialect. This time, the parents walked out of the meeting. Another meeting was scheduled a couple of weeks later with a professional interpreter from an agency. It is now written into Vic's IEP that a Cantonese interpreter from The ABC Agency will interpret all school meetings for the Wan family.

I was so proud of Mrs. Wan. She went from silent compliance to self-advocacy in twelve short months. I am certain that she will continue to be an effective advocate for Vic for many years to come.

Anonymity

Two Saturdays ago I took Kellen to our local Starbucks and the young man who took our order looked over at Kellen, then back at me and said, "Oh, are you D.Q.'s mom?". I said "yes" and we got into a conversation about how he knew my daughter, etc. One week later I drove through the drive-thru at the same Starbucks. The same young man came to the window and I said, "Your name is 'Tom', right?" He looked at me intently and it was obvious that he had no idea who I was. I reminded him that I had met him last Saturday and that I was D.Q.'s mom. He said, "Ohhh, yeah, you must have been wearing something different." I'm sure he wanted to say, "Ohhh, yeah, I didn't recognize you without your son with Down syndrome."

Having a child with Down syndrome means that your family will never again me anonymous. You will always kind of stand out in a crowd. I don't think it is necessarily a good or bad thing, it just is.

We live in a town of over 80,000 people and our county has a population of over 1.7 million. One day last summer I organized a picnic for families of young kids with Down syndrome at a wading pool in Seattle. The next day our family went to dinner in another city about 20 minutes from Seattle. The hostess at the crowded restaurant recognized us (Kellen) and said, "You were at the wading pool yesterday, weren't you?" I was really shocked that she remembered us, especially so far from where she had noticed us the day before.

Once or twice I've also had someone come up to us and think that Kellen is someone else. They will call him another name and I will correct them. Then they look at me sheepishly and say something like "Oh, he looks just like a kid I know named Riley..." I just sort of shake my head and want to give a retort such as, "Yeah, all of those kids with extra chromosomes look alike, don't they?."

Have you ever had a similar experience?

Syndrome Syndrome (part 2)

May 1st was Blogging against Disablism Day and I posted this. Well, I guess I'm not done with the subject. It got me thinking about a day a few years back when I happened to drive Kellen to school and walked him into his busy general ed classroom. His regular paraeducator was sick and so there was a substitute. Here is how the exchange went:

Me: I'm glad I dropped him off today, I can take a few minutes to tell you about Kellen.

Perfect Para: Oh that's okay, I've worked with them before.

Me: Oh...you've worked with Kellen before?

P.P.: No, I've worked with Down syndromes.

My mouth dropped open and I think I gave her a little, tiny, piece of my mind. Not a large piece...afterall...she was going to be working closely with my son all day.

I tried to give her some helpful hints to make her (and Kellen's) day go smoother, but she felt that he would be like all kids with Down syndrome and therefore she didn't need to know what made him unique. I find it frustrating when our kids aren't allowed to have unique personalities. They aren't expected to have their own, individual gifts and talents, preferences, and things that motivate them. I kind of hope Kellen gave her a run for her money that day..my bad.

Syndrome Syndrome

When you have a child with Down syndrome, chances are you experience a strange brand of prejudice and stereotyping right from the very start. I call it Syndrome syndrome.

The grave doctor informed me while I was on the delivery table that he suspected my son had a "chromosomal abnormality", probably Down syndrome. From that point on, in the medical professional's eyes, my tiny son joined a unique club. Since he was a member of this exclusive club, they already "knew" many things about him. They "knew" he would have low muscle tone, developmental delays, and most likely a multitude of medical issues, both present and future.

The geneticist "knew" that he wouldn't live with us all of his life and that he would ride the bus some day. The social worker "knew" that he would not know or care that he had mental retardation. The physical therapist "knew" that he needed lots of intervention so that he wouldn't "walk like a duck" as an adult.

Later, the educators got on board too. They "knew" he would need to be in a self-contained special education classroom in order to learn anything. After all, he would get more attention there, and kids "like him" benefit from individual attention. They "knew" he would need to learn how to be "compliant" or there was no hope for his future.

Having a child with a syndrome as common as Down syndrome means that right from the start a parent must recognize their child and family's uniqueness and individuality and counteract prejudice and stereotyping wherever and whenever they find it.

Blogging Against Disablism Day - May 1st, 2007

Participating Blogs

Impact

When Kellen was in Kindergarten he had the most wonderful teacher, Mrs. A. She was knowledgeable, experienced, compassionate and an all-around perfect teacher for Kellen.

During the spring of that year, I went into Seattle to see a foreign movie called The Eighth Day. It starred a young man with Down syndrome who did such a great job of acting that he and his co-star shared the Best Actor Award at the Cannes Film Festival in 1996.

The film had a deep impact on me and one day I shared my thoughts with Mrs. A. I told her that the movie showed me that Kellen would need more than just his mother and father in his life. He would need a cadre of people who loved, cared and would look out for him, so that after we're gone he wouldn't be all alone.

Mrs. A. quickly responded with, "I want to be one of those people".

It was so unexpected and so touching that my eyes immediately filled with tears. Ten years later, thinking about this moment can still make me tear up. There are some very, very good and kind people in this world that are just waiting to be asked into your child's life. Have you experienced them?

Got Groove?

A couple of weeks ago, I had the wonderful opportunity to attend a presentation by Dr. Dennis McGuire from the Adult Down Syndrome Center in Illinois. Dr. McGuire is the social worker at the center. He has twenty years of clinical experience in both the mental health and disability fields. This guy knows a lot of folks with Down syndrome!

I first became familiar with Dr. McGuire several years ago when I read his article "The Groove".The article explained quite a bit about Kellen's behavior even though he isn't yet an adult. The groove can start very early!

"One of the most interesting and consistent findings from the Adult Down Syndrome Center is the discovery that people with DS need sameness,repetition and order in their lives. We call this tendency the “groove” because thoughts and actions of people tend to follow fairly well worn paths, or grooves."

If this sounds like your family member, get thee to the website and download "The Groove". Print it off and give it to your child's teachers or employers. They will better understand what they are dealing with. They will thank you.

Meanwhile your family member will still be groovin'. According to Dr. McGuire, when you have an extra 21st chromosome, it's "onboard equipment".

World Down Syndrome Day

March 21st is World Down Syndrome Day. The date "3/21" was chosen to represent the three chromosomes on the 21st pair that make those with Down syndrome unique. Today we celebrate people with Down syndrome and the contributions they bring to our lives.

What does Kellen bring to my life? He, not so gently, urges me out of myself. He helps me to see the world through his beautiful eyes. I like what he brings out in other people too, sometimes it is the bad, but most of the time, it is the good. I wish everyone could have a person with Down syndrome in their lives. I think if they did, the world would be a much more colorful place where people were sensitive and compassionate. I'm sure there would be an increase in hugs (and really good ones too.)

Do you have someone with Down syndrome in your life?