MOSAIC MOMENTS

I love these “Ah-Ha” moments when a parent discovers that just because their child has Down syndrome does not mean they are unable to accomplish everything their peers can accomplish.  

Lisa Van Wey shared her “Ah-Ha” moment with me just the other day, and it is a wonderful story of how her son, Matthew taught her a very valuable lesson in his abilities.

Here is Lisa’s story of how Matthew showed her that he can do anything!

It was June, 2006, we had just finished dinner on the patio. My parents had dinner with us and the boys were showing off for Grandma and Grandpa.  We were teaching our 5 year old son, Tyler to ride a bicycle without training wheels in the backyard. My husband would walk around the yard with Tyler over and over letting go a little bit at a time, picking him up and trying again. Matthew was 8 years old and his bicycle still had training wheels too. He loved his bike and rode around the yard as fast as he could and we loved watching him!

This particular day, Matthew kept trying to take off his training wheels, we kept trying to tell him he needed “his wheels” to ride his bike. I was talking to my Dad about what options we had for Matthew when he outgrew this bike and needed bigger training wheels. My Dad had this great plan about where to get the bigger wheels and said it wouldn’t be a problem to put them on a bigger bike whenever that time came.  I was so happy that we had a plan for Matthew. We loved going to the bike trail.

After a while, Matt’s Daddy took off his training wheels. Matthew took Daddy by the hand and led him to his bike. Matthew got on his bike, Daddy grabbed the seat to balance the bike and Matthew took off and Daddy was running behind!!! Daddy let go and Matthew was riding all by himself!!! He rode for about 40 feet and then fell over! He jumped up and said “TA DA”. We all began clapping and cheering for Matthew! We were so excited! My parents said they couldn’t believe what just happened. They were very happy they saw it all. Matthew continued to keep trying for the rest of the evening. His balance was pretty good.

I told my Dad that he could scratch the plan for bigger training wheels. I said that I felt really bad about how I had just limited Matthew by not thinking about him learning to ride without training wheels.  Just because he has Down Syndrome shouldn’t be a reason to limit him. My husband and I learned a big lesson that day.

Within a few days, Matthew was riding his bike on the sidewalk (with Mommy or Daddy close behind). He has outgrown the 16 inch beginner’s bike and now rides a 20 inch bicycle. He rides up and down the sidewalk with his brothers sometimes racing and chasing each other. He can also ride a 2 wheeled scooter and will  ride the neighbor’s  skateboard whenever it is left out.

We continue to be cautious, but we do not limited his abilities!!!

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Today, I am going to share with you one of those “Ah-Ha” moments in life. We all have them, or at least I hope we do. This is the moment between “Oh my gosh, will my baby be OK? What does Down syndrome mean for my child’s future?” to that big sigh of relief realizing that all those worries you once had you now know are unfounded and that ”Yes, indeed, your baby will be OK, and so will you!”

Cindy over at Three Syllables shared her “Ah-Ha” moment with me. This happened to her when Gabe was just 6 months old. He is now 3 years old and has a bundle of energy and a billion-watt smile.

Gabe was six months old and I was very unaware of what his abilities would be.  He was a very typical 6 month old.  But even typical 6 months olds don’t show much progress in the intelligence department.

We were attending our local high school talent show and my son Chet, was singing a song, accompanied by my daughter, Dana, on the piano.  The two had practiced the song over and over for weeks.  I was often sitting in the living room nursing Gabe while they practiced.  He never paid the least bit of attention to them.

The show was about half finished when Gabe needed to nurse.  I checked the clock and figured we could make it.  You see, when Gabe nursed it was a forty minute process.  Gabe nursed twenty minutes on each side, with NO interruptions.  He even cried during the brief transitions of switching sides.  Less than ten minutes into his meal Chet and Dana came on to perform.  Dana played the introduction and when Chet started to sing Gabe tried to sit up.  I thought he had just wiggled away and tried to reposition him under the light weight blanket.  He resisted, pulled at the blanket, and struggled to sit up.  I sat him up in my lap and he intently watched the stage for the entire four minutes of the song.  As soon as the song ended he laid back down to resume nursing.

I was stunned.  Gabe had NEVER allowed his meal to interrupted short of the forty minute mark, not for anything.  It was very apparent to me that there, in that strange place, he connected very strongly with something familiar and seriously out of place.  That connection was stronger than his need or desire for food.  At that moment I knew that he was in tune and aware of both the familiar and unfamiliar.  I felt like Anne Sullivan when Hellen Keller signed “water”, and she announced, “She knows!”  Gabe knew his family. 

I also knew that I could not put limits on what Gabe’s intellectual boundaries would be.  So, even now, when he is almost three I don’t assume that his failure to communicate his thoughts means he doesn’t have thoughts and I continue to provide the input and wait for him to reveal the depth of his understanding when he is ready and able.

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Today in America, it is Thanksgiving. This is our time to give thanks for all our blessings of the year. And this year, I truly have been blessed!

So, today, in honor of Thanksgiving and of the 21st chromosome of Down syndrome I am going to count my blessings!

1. I have a husband who, even after all these years, loves me each day like it was our first! (not many can say that)
2. I have five wonderful sons who are all healthy and happy!
3. I have four amazing grandsons who bring a smile to my face just by thinking about them!
4. I have a roof over my head. (there are so many who don’t)
5. I have satellite TV. (I remember the years of going outside to turn the antenna to get a different channel)
6. I have food, not much… but I am not hungry.
7. My husband is working…. it may not be the job he wants, but it is a job.
8. My parents are alive. (my daughter-in-law’s father died a few weeks ago…)
9. I live in America.
10. My children don’t take drugs.
11. My sister, Lisa, is my best friend
12. I have a great church family
13. I have Internet, which gives me the capability of having thousands of friends and resources!
14. I live in a town that is virtually crime free
15. My community accepts Tim for who he is, not what he has.
16. I can pick up my phone and call whom ever I want and not worry about long distance charges!
17. I am healthy.
18. I can find the silver lining in every dark cloud.
19. I have the honor to be the president of International Mosaic Down Syndrome Association
20. I work with some fantastic people who all care deeply about those with mosaic Down syndrome.
21. I have a very large extended family who blesses me each day with their emails, phone calls and comments to this blog. Thank you all for being part of my blessings!
    

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Yesterday I received an email alert that brought up a discussion of Down syndrome. AskMen.com poses the question, “Would you keep a baby with Down syndrome? Does a person with Down syndrome really suffer in today’s society? Should a test for this disorder even be an option for pregnant women?”

The responders of this debate come from all sides. The one question that struck me hard was “Does a person with Down syndrome really suffer in today’s society?”

My answer is ‘yes’, but not the way most people who do not have a child with Down syndrome or mosaic Down syndrome think.

A person with Down syndrome or mosaic Down syndrome does suffer.

They suffer from ignorance.
Not their own-But the world’s.

They suffer from discrimination.
Not because they can not discriminate the differences between others-But because the world discriminates against them.

They suffer from communication problems.
Not because they can not communicate-But because the world will not listen and communicate with them.

They suffer from misunderstanding.
Not because they don’t understand-But because the world refuses to understand them.

They suffer from learning problems.
Not because they can not learn-But because the world believes they are not teachable.

They suffer from the inability to make friendships.
Not because they are unable to be a friend-But because the world teaches their children to not associate with them.

Do people with Down syndrome suffer? Yes, unfortunately they do. But only because the world sees them as so incredibly different from themselves.

If the world would stop and get to know–really know–someone with Down syndrome, they they would realize that they are no different than anyone else!

Some may talk a little different, but that doesn’t mean they don’t know what they are saying! It just means they have trouble forming the words.

Some may learn a little different, but that doesn’t mean they can not learn! It means that like every single other person in the world, they learn at their own pace.

Some may look a little different, but that doesn’t mean something is “wrong” with them. Even identical twins look a little different from one another.

My son has mosaic Down syndrome.

He is 22 years old.

He likes RPG video games.

He likes YouTube.

He likes horror movies.

He LOVES girls.

He plans to have a family.

He plans to have a career in computer graphics.

He is a great writer and hopes to be published one day.

He wants to travel.

He would love to go to Japan.

He likes hanging out with his friends.

How different is he really to any other 22 year old?

This goes back to my statement years ago that became my Trademark:

The Only Handicap A Person Has Are The People Around Them!

The only thing people with Down syndrome or mosaic Down syndrome suffer from are the people in the world who do not believe they should be here in the first place.

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I am loving bringing these stories to you! Today I have a great story to share about 3-year-old Finnegan. Finn seems like quite a character and is definitely a real cutie! It is stories like these that let others know that even though a child has Down syndrome, they are just like everyone else. And, Finn is no exception! Join me as Finn’s mom, Melanie tells us about her little boy and his great personality….

My 3 year old son, Finnegan is always doing funny things. He makes me laugh often.

His Mimi and Pop (grandparents) are in their early 70s. They spent the summer here in Salt Lake and Finn had a blast going to their condo every day. On the drive over, he’d just be singing “Mimi and Pop, Mimi and Pop.” Sadly they returned home to South Carolina.

We were watching the Today Show one morning after they left, and Willard Scott was doing his segment celebrating those who were over 100 years old.

They showed a woman and Finn yells “Mimi” and then of course a man is featured and he yells “Pop” – his Mimi and Pop were delighted to hear that Finn had aged them about 25 years.

Actually, if Finn sees any man with gray hair now he says excitedly “Hi Pop!” Much to their amusement.

We recently had a baby brother to Finn, who he mostly likes. However, his brother is a crier. Finn was seated watching Elmo (which he does reclined in a bean bag with his hands behind his head). I came in with his brother Shane, who was starting to cry. Finn gave me a hand up and a serious “no mommy.” Which basically meant don’t even think about bringing a crying baby into the vicinity when Elmo is on.

I adore my little guy and he makes me laugh every day. Although, he is getting to be more and more of a daddy’s boy and has less time for mommy. However, he always has time for directives sending me into the kitchen for “crackers.”

I just insist on “please.”

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Last week I asked you all for stories about your children with Down syndrome or mosaic Down syndrome. I was happy to find my email filling up with stories from parents everywhere! If you haven’t sent me a story please do! This is such a great way to spread awareness! Be sure to include a picture in your email if you can!

Today I am bringing you the story of Mac! Mac is now 10 yrs old and in the 5th grade. His sister Kit, is 7 yrs old and in the 1st grade and she also has Down syndrome. Their mom, Jill shared a great story with me that actually happened a couple of years ago.

Here’s Mac…..

My son, Mac, turns 8 this week.  He has Down syndrome and is *included* in 2nd grade all but 30 minutes a day to visit the intervention specialist for extra support and 20 min./twice a week for speech.  I’m not totally thrilled with his program–I’d like to see more (much) in the way of modifications to the curriculum for him–but I am very pleased with the sense of acceptance and belonging he shares with his peers.

Today was his b-day birthday party and we invited the whole class (21 students–not including him) to join us for a bowling party.  13 of his friends came to the party and they all had a ball.  Mac was not treated differently (good or bad) than anyone else–the kids *included* him in their horseplay, “yelled” at him when it was his turn to bowl, and generally he was just a part of the gang.  To me, that is my proof that the decisions I”ve made thus far on his behalf have been good ones.  He HAS friends and relations with others that are important to him and appear to be to the others as well.  What was especially interesting/pleasing (but not necessarily surprising to me (and my family) was how very well the kids KNOW Mac–not that they just accept him and have fun with him–they know who he is, what he likes/doesn’t like and how to get him to cooperate when he’s being a bit obstinate.  Some of the kids were so surprised that we didn’t have a Spiderman party because they knew that’s what Mac liked and he got 7 different Spiderman gifts because they know him.  Two girls, against their mothers advice, got him ties–Mac was thrilled!!  He loves ties and wears one every Wednesday to school when he gets dressed up (he also likes to dress up, but I limit it to once a week ).  The mothers told me they didn’t really believe their daughters when they were insistent that they get him a tie and that he would like it.  They definitely know Mac well–he was tickled. 

Just wanted to share as it was a wonderful day for me to be able to observe all of them together and see that Mac is truly one of them.  I hope that continues for years and years to come.

Mac & sister Kit

I can totally identify with Jill in this story! Like Mac, Tim LOVED to dress up and was always wanting to wear a tie! (sorry Jill… that may wear off later in life, because now I can barely get Tim to dress for Church!) I remember when Tim was younger and had birthday parties such as these and loved that the other children truly considered Tim as their friend. They didn’t see him any differently than their other friends did! I think it is the adults who instill those differences in their children and this is why it is so important for the adults to change their perspectives, so the children can keep theirs!

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Well, we expected Tim to return from vacation on Thanksgiving day, but my parents had to cut the trip short because they have somewhere else to be on Thanksgiving.

He had a good time. He did not get eaten by a bear, so that was a plus, since I did worry about that! lol

The highlight of his vacation…. he went to a winery and tasted wine! Now for those of you who know me well, you know I stay far away from alcohol and am pretty against my kids drinking because of our family tree. So, some of you may be wondering if I am totally freaking out at this point…. Tim was too, when he told me. LOL In fact, I think he was hoping I would freak out because he was so far away and I couldn’t do anything about it.

You will be very proud of me! I didn’t freak out, in fact I was glad he did this! This is a very important part of growing up! He tried six different wines.

And, each and every wine he tried…. He hated!

Tim is always someone to describe in detail what he is feeling or what is going on around him. This comes from his love for writing and possibly a little bit from his Asperger syndrome or his mosaic Down syndrome. Whatever the reason, I always love to hear his analytic descriptions of things.

So, when I asked him about the wine…

He said that it tasted like he swallowed an olive whole and he tasted the olive in his throat.

I thought that was a pretty good description of drinking wine.

I told him that this was good and now he doesn’t have the curiosity of what wine tastes like. His reply? “Yeah, but I still have to try champagne and margaritas!”

I feel more gray hairs coming!!!

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Today my post has nothing to do with Down syndrome. Today, my post is about Childhood Cancer.

This morning when I opened my email, the first one that caught my eye was titled, “Prayers Needed”. I immediately opened it and found that indeed, prayers were needed.

On December 7, 2007 one of IMDSA’s past board members, Erika Hauschildt, received the news that her soon-to-be seven year old daughter, Ella Hope had a rare brain tumor called Diffused Intrinsic Pontine Glioma. (DIPG)

Erika and her husband John had lost a daughter before Ella was born to stillbirth. Then, their son Caden was born after Ella and they were told he was born with cancer. However, they discovered that Caden had mosaic Down syndrome and because of those extra chromosomes, Caden’s cancer cells disappeared on their own.  His parents rejoiced and were so thankful for those extra chromosomes!

People don’t talk about childhood cancer. And now, as I sit here and write this, I think of my earlier post this week, “Its a matter of Perspective” when I told you my thoughts on Cancer compared to Down syndrome.

This past year has been, without a doubt, a huge roller-coaster ride for the Hauschildt’s. I watched as Ella went through her radiation treatments and cried right along with Erika and John when they so carefully wrote in their caringbridge journal and continue with their Hope.

I rejoiced when Ella was finished with her radiation treatments and prayed continuously that the radiation had worked.

Click Here to see Ella’s Radiation Journey.

Unfortunately, the radiation did not shrink the tumor.

Then, they decided to try an alternative therapy. When the therapy was over, we all rejoiced with the news that the tumor had shrunk significantly. This was the miracle we were all hoping for!

Erika and John’s Hope for Ella was strengthened and they shared their story on the local news. Click here for that segment.

Unfortunately, the tumor came back and as the days progressed, Ella got worse.

When your spouse dies, they call you a widow.

When your parents die, they call you an orphan.

When your child dies….they don’t have a word for that. Because no words could possibly describe that feeling.

Yesterday, November 21, 2008 Ella Hope went to be with the Lord.

The day before she died, one of Erika’s old co-workers called to say that she was publishing Ella’s poems in her magazine. You can purchase that by clicking here.

Ella was like every other seven year old little girl. She loved to laugh and play and had a smile that would warm your heart and a sparkle in her eye that would brighten any room! She said when she grew up she wanted to be a teacher. She didn’t realize that she already was a teacher! She taught every single person who knew her so much about life and love and how to embrace each and every moment of the day!

The tears I shed today are not for Ella. Today she is singing and dancing with the angels! Today, Ella is no longer in pain and no longer has trouble talking or seeing.  The tears I shed are for Erika and John and Caden and the rest of the family. I can’t imagine the emptiness they feel right now. I know that they will come out on the other side, no matter how long it takes them.

If you would like to read the Hauschildt’s CaringBridge Journal, leave a message of encouragement, or donate to help with their mounting medical bills, you can visit by clicking here.

Last month I had so much fun writing my 31 for 21 blog. I was able to give you all a glimpse into these individual’s lives and spread a great awareness about mosaic Down syndrome and Down syndrome.

I miss that! I want to do more stories!

But, of course, I would like to do it with a twist!

So, this is what I need from each of you. If you have a child with Down syndrome or mosaic Down syndrome please tell me your story.

Was there a moment when you looked at your child and realized that these extra chromosomes were not such a horrible thing?

Do you remember a time that your child did something so “typical” that you were filled with joy just because it was a “typical” moment?

Did your child accomplish a milestone that you worried so much in the past they would never get?

Can you look back now and realize that all the things you worried about when you first got the diagnosis are now unfound worries?

No matter what your story is, everyone has a story! Please share yours with us! The awareness you can spread may make a huge difference in a new family’s life!

Email me by clicking here to send me your story.

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