Mosaic Moments

There has been a lot of discussion lately through IMDSA’s support group about how to tell your child about their diagnosis of mosaic Down syndrome.

Many know, from listening to our NPR show This American Life, we chose a different approach than most do in telling their child.

However, our approach is not always the right approach and I think it all depends on the family and the situation around them.

My thoughts on this is if you speak freely about your child’s diagnosis in front of them when they are young and throughout their life, then it won’t seem like a big deal to them.

It is only a big deal if you make it a big deal.

Then, later when they are old enough to understand and they begin asking questions about their differences, you will know that they are ready to understand the diagnosis.

When Tim was 12 he asked me if he had a medical condition that I hadn’t told him about because I didn’t think he was mature enough to understand.

The question took me by surprise.

So, I told him “Yes” and left it at that.

I had kept the diagnosis from him in his young school years only because I was afraid he would use it as a crutch to not get his work done. In second grade, he had told me that he couldn’t do his homework because he had ADHD. I thought, “Wow! What would he say if he knew he had extra chromosomes?” So, we decided to keep the information secret. We had already begun doing that in school since the teachers who did know were treating him differently–not what we wanted for our son who we knew could succeed if only given the chance.

As I look back on all those years I ask myself if I would have done anything differently.

The answer is “no”. Not at that time I wouldn’t have. Our decision to keep this from Tim and the world was what worked for us at the time.

Now, if we were to begin again today in 2008…. my answer may be different. I am a stronger advocate than I was then. And, I am much older and wiser. I know more how to fight for my son’s rights and I know that today things are a little different–not much–but a little, in the way society views those with different abilities. And, I have a huge family of supporters throughout the world to back me up…something I never had when Tim was young.

The bottom line is, don’t make a big deal about it and it wont become a big deal. If your child had dyslexia you wouldn’t keep them from that information. You would talk about it freely. If your child had ADHD you would talk about it. If your child had Autism you would talk about it.

No matter what your child is diagnosed with it is what they have, not who they are. They wont, all of the sudden, think “Oh no! What am I going to do now?” It is something they have always had and when you explain it to them, when the time comes, then they have a reason for their differences and more than likely, like Tim, they will feel relieved in knowing why instead of worrying about it.

What if someone told you today that YOU had Down syndrome, mosaic Down syndrome, Autism, ADHD, or any other learning disability? After the shock, what would your reaction be?

Don’t miss out on new articles! Click Here to subscribe and receive one email daily to remind you a new article has been posted!

Did you like this story? Click the Buzz Up button to make your vote! The more votes the more we spread awareness!

In 2007 Martin Harris helped raise money for British athletes to go to the World Special Olympic Games held in Shanghai, China. He had the unique opportunity to attend and watch the athletes train and compete in this world-wide Olympic event.

Martin was struck by the sincere friendships that were forming all around him. He watched as the 60,000 people from 160 countries said farewell to one another and realized that these people had formed a strong bond and had truly become friends in this short time together.

This is when Martin realized that there was a strong need for an online community and the idea for Special Friends Online was born.

Upon his return to the UK, Martin immediately got to work in developing this safe and secure environment for those with special needs to connect with one another regardless of their abilities.

Within the first few weeks of research with the team Martin had helping him, it became apparent that there was also a need for the parents and carers to keep in touch and share information, especially for those who have babies and infants with a learning disability to meet people having similar experiences and perhaps being united with support groups and people in their own area.

Special Friends Online is a message board for people with learning disabilities to talk with one another in a safe environment through email, chat rooms and the special Smiley Talk instant message program that enables users to have a conversation online without having to type. Smiley Talk has pre-conversation options to click and you can go back and forth in conversation with this system and have a regular conversation with your online friend.

For a limited time, Special Friends Online is offering this service free of charge. So, if you have Down syndrome, mosaic Down syndrome or any type of learning disability, or if you are a parent or carer of someone with Special Needs, I highly recommend that you check them out.

You will have fun and meet lots of Special Friends Online!

After publishing this story, I received this message from Claire at Special Friends Online and wanted to share it with you all. Here is what Claire had to say… 

Hi there

My name is Claire and I am the operations manager of www.specialfriendsonline.com. The reason for me writing is to thank you for the write up that you have done about special friends. I am currently in the process of spreading the word so your help is greatly appreciated.One thing we has become apparent through special friends is that many parents would like to create awareness about their child’s life and/or learning disability. There are several ways in which we can assist if this is of interest to you.

Don’t miss out on new articles! Click Here to subscribe and receive one email daily to remind you a new article has been posted!

Did you like this story? Click the Buzz Up button to make your vote! The more votes the more we spread awareness!

There is an old saying that says “Babies don’t come with instruction manuals”. These seems more the case when you have a child with Down syndrome or any other special need. Parents are constantly trying to come up with ways to help their child and discover what works and what doesn’t.

But what if there was an instruction manual? Would you stand in line to be the first one to get it?

I think most of us would. If it would help our children and save us some headaches and sleepless nights, I think every one of us would be standing in line for this book!

Up until now, there hasn’t been such a thing. But, one is in the works and the best part is, YOU can be a part of it!

The Special Needs Handbook will be a down-loadable book (and maybe later a hard copy edition) of tried and true tips from parents of children with special needs.

This is in the early stages and without a doubt, a large project. The outline for the book is the following:

Don’t miss out on new articles! Click Here to subscribe and receive one email daily to remind you a new article has been posted!

Did you like this story? Click the Buzz Up button to make your vote! The more votes the more we spread awareness!

For this past month in honor of Down Syndrome Awareness Month, I have been bringing you stories of different individuals with Down syndrome and mosaic Down syndrome.

Today, I want to share with you one of my own “Mosaic Moments”

My son, Tim who has mosaic Down syndrome, ADHD, and Asperger syndrome (a form of Autism) is now 22 yrs old. When he was diagnosed with MDS and ADHD at 2 1/2 yrs old, I was told I should put him in an institution and forget about him. I was told he would be a major burden on me and my family. I was told he would never learn and that he would be totally dependant on me.

He has, time and again, proved them wrong.

Five years ago today,when he was 17, Tim managed something that will forever stay with me…

It was a Sunday afternoon and we were saying our goodbyes as we walked out of our tiny, wooden church. The preacher’s wife asked me what my plans were for the afternoon since it was my birthday. I told her I was looking forward to going to Walmart for the afternoon to get my weekly shopping done. (after all…a mom’s work is never done!)

So, I had it in my mind that we would go home, change clothes, have a quick lunch and be on our way. As I rushed around to get everyone’s lunch prepared, my husband stretched out on the couch with the intent for a nap. Tim, turned on a video game and began playing it. Garrett went into his room to play with his toys.

Needless to say… I GOT ANGRY!!!

I had plans and they did not include lying around the house for the day! But regardless of my plans, they were in no hurry to go shopping.

Finally, an hour later everyone slowly got moving and we were on our way.

Or, so I thought…

My husband, Glenn said we had to stop by the church first to help move something. This just added to my increasing frustration. But I obviously did not have a choice! “This” I thought, “is not the way I should be spending my birthday!”

When we pulled up to the church I had no intention in getting out of the car. After all…they were going to move something and then we could be on our way! But, Glenn said he wanted me to come in with him. So, begrudgingly I got out of the car and made my way up the sidewalk with my family trailing behind.

I opened the door and found the room full of people.

“Surprise!” they shouted

Not sure of what was going on, I thought “Wow! Don’t y’all feel dumb for saying surprise to wrong person!”

Then, as I looked around the room I realized the people in this room were not only from my church. These were people from throughout the community. Each of them were my closest friends!

Needless to say… I was confused!

My preacher’s wife saw my confusion and quickly explained.

For the past month, Tim planned this surprise party for me. He made the guest list and planned the time and place. He asked the adults to help get everything there for him, but it was his entire idea and my husband didn’t even know about it until a few days before!

Tim is truly an amazing young man and his compassion for me and others is so wonderful.

For this past month, Tim has been working long, hard hours building fences with my dad. With the money he earned he bought me two DVD’s and a CD and gave it to me today for my birthday. He is always doing special things like that for me.

I am very blessed to have all of my sons and each are so caring and compassionate and they make sure, each in their own way, to let me know how much they love me.

I have to think, “What would have happened if I had listened to his doctors and put him in an institution all those years ago?”

I know one thing for sure… They were wrong!

Having mosaic Down syndrome or Down syndrome is NOT the worse thing in the world to have. Individuals with this extra chromosome can learn and more importantly, they can teach you so much about life that you didn’t even know you needed to learn!

Don’t miss out on new articles! Click Here to subscribe and receive one email daily to remind you a new article has been posted!

Did you like this story? Click the Buzz Up button to make your vote! The more votes the more we spread awareness!

I am, without a doubt, one of those people who suffer from Attention Deficit Disorder. (ADD) I have never been diagnosed with it, but I am sure I probably do have it, because staying focused on one thing too long seems to be a major problem for me! (try to follow my phone conversations and you will know what I mean! LOL)

Tim has a T-Shirt that says, “They say I have ADD, but they just don’t understand….. Oh Look! A Chicken!”

Here he is wearing the shirt.

Now, when driving down the road and talking with my kids, I will be in the middle of a sentence and all of the sudden I see purple flowers on the side of the road and I say, “Oh look at the pretty flowers!”. Garrett or Tim will invariably tease me and say “ADD Mom! Oh Look! A Chicken!”

So, when surfing the Internet, I manage to get into sensory overload and go from one place to the next and before I know it I forgot what I was looking for in the first place!

But in most cases, I wind up in just the right place at the right time! Today, I was looking at Heather’s Blog ”Little Wonders”. You have to visit that site! Her Zoey is just a cute as a bug! I got to Heather’s Blog because she had linked my blog to hers in one of her stories. Thank’s Heather!

So… I was visiting her blog and reading the posts when I came to one of her posts that talked about the Gifts book. If you haven’t read Gifts, you are missing out an amazing adventure!

Through Heather’s Blog, I discovered that Gifts is adding Blogs about Down syndrome there. Heart warming stories to let others know that having a child with Down syndrome is not the end of the world, yet a beginning to a new journey in life!

I have included my request to add my blog there as well. This way, anyone who has yet to make it here will know where I am and hopefully I can inspire more people with these great stories.

So… even a little ADD is not a bad thing! You get to meet new people and read some amazing stories! Please go here and get a great glimpse into so many people’s lives who have some beautiful children who just happen to have a little extra chromosome that makes the extra special!

Don’t miss out on new articles! Click Here to subscribe and receive one email daily to remind you a new article has been posted!

Did you like this story? Click the Buzz Up button to make your vote! The more votes the more we spread awareness!

On Sunday, the NPR show “This American Life” featured  me and my son, Tim who has mosaic Down syndrome. This was a rerun of the 2006 program that we did with Karen Sosnoski who also has a son, Anton, who has mosaic Down syndrome. Sunday evening, when I looked at my blog stats I realized that I was getting a lot of visitors who had listened to our show and were looking for more information about us and our unique story of how I kept Tim’s diagnosis of mosaic Down syndrome a secret from most of the people around him as well as himself.

I am happy to see that more and more listeners of that program are coming in to find out more information! This morning, I got a call from Dianne who has a great blog called Erin and Mary Ellen’s Excellent Adventures about her beautiful little girl Mary Ellen who also has mosaic Down syndrome. She and Kris (whose daughter, Erin, has Down syndrome) had started this great blog about Down syndrome and later Dianne found out that Mary Ellen had mosaic Down syndrome instead of Trisomy 21 Down syndrome. Dianne called me to tell me that she was getting a huge amount of hits on her site from searches about Tim and mosaic Down syndrome. She asked me what the heck was going on and so I explained that it was all because of the great listeners from This American Life!

So, my advice to all those bloggers out there…. Write about Tim!
(and please link back to me!)

This will give you more hits on your site and help you to spread awareness about mosaic Down syndrome AND Down syndrome!

Let your voice be heard! Tell them what is important to you! Tell them why you love your child unconditionally! Tell them what your child CAN do! Be honest too! Tell them about your struggles. We all have struggles even if our child has the typical number of chromosomes!

My biggest struggle today–I live in a house full of testosterone! My sweet little Garrett has hit pre-teen puberty with the force of a freight train! HA! You thought my struggle was having a child with extra chromosomes! Some days it is….today is not that day!

What Can Tim Do???

Tim can make the best Chicken Fried Steak in the world! And, if you live in Texas that is quite a feat!

Tim can listen to a song on the radio and immediately play the entire song back on his harmonica! (no…he had no lessons…he taught himself)

Tim can write stories that are so in-depth that even I don’t get them! LOL (my mind is much simpler than his)

Tim can write poetry that makes me very sad. But his poetry conveys his feelings about the world and their perspectives and honestly….he is dead on.

Tim can look at an expression on my face and know immediately if I am worried, happy, angry, sad, or stressed out. And then, he compassionately tries to help.

Tim can joke with his friends, and his brothers. And, he tells some pretty funny jokes!

Tim can do just about anything on the computer, and if he doesn’t know it… he’ll figure it out! (did I tell you the one about him hacking into the school district’s computer system to change his grade??…yeah…that was a good one!)

Tim can spell. I can’t. I ask Tim how to spell everything all the time! He tells me to use spell check….but I like asking him!

Tim can tell you the definition of almost every single word in the dictionary! Tim uses way bigger words than I do. He should get a job for Readers Digest when they do that vocabulary enhancement thing! He would be great!

What can Tim NOT do??

Tim can’t drive. Well… he actually CAN drive… he does it all the time in my parent’s property when he is working over there. (this week he is building fences and a hay loft for my parents) I just don’t let him drive on the road because he has a bit of a delayed reflex and I worry that he wouldn’t stop fast enough if a car in front of him put on their brakes.

Tim has trouble socializing with his peers. This has nothing to do with mosaic Down syndrome. Tim has severe ADHD and Asperger syndrome. (Asperger syndrome is a different form of Autism that often delays socializing)

Tim has Auditory Processing Disorder. What this means is when you say something to him, it takes a little longer, not much but a little, for him to process and understand the information you have given him.

Tim has great ambitions!

Tim wants to be a computer graphic artist. He LOVES Anime and he would love to be part of the production of that.

Tim is a great writer and CAN write phenomenal stories! He just needs the focus to complete a story. If he completed one, we could all retire and live in the Caribbean!

Tim wants a wife and a family and is always talking about what he will do as a father to his children.

Tim is just like every other 22 yr old American male!

He hangs out with his friends.

He plays video games.

He does all kinds of stuff on the computer.

He eats me out of house and home!

He plans for his future.

He cares for his family.

He thinks Asian girls are hot!

He wants to visit Japan. (more about Asian girls lol)

He wants a career.

He wants independence.

He wants people to look at him and see HIM. Not the guy with this rare form of Down syndrome. Not the guy who has Asperger syndrome. Not the guy who takes meds for ADHD and a Thyroid condition.

Tim is Tim.

He and I sing a song together that is by Celene Dion called “Because You Loved Me” This song is something that we sing to each other. We both feel the same way about each other and we both say…

“I’m Everything I am Because You Loved Me!”

Don’t miss out on new articles! Click Here to subscribe and receive one email daily to remind you a new article has been posted!

Did you like this story? Click the Buzz Up button to make your vote! The more votes the more we spread awareness!

Back in 2006 my son, Tim and I had the honor to be on the National Public Radio show “This American Life”

Karen Sosnoski had attended IMDSA’s 2005 Conference in Houston and during our banquet I told a little about our life and how I had kept the information of Tim’s mosaic Down syndrome from his teachers and from him.

The reason I did this, is because when the teachers did know about his mosaic Down syndrome, they would treat him differently and not expect him to do any work in class. He would get away with unacceptable behaviors as well, which would result in him being singled out among his peers.

The reason I kept the information from him, until he was 14, was because we didn’t want him to use it as a crutch to get out of doing things. In second grade he had told me he couldn’t do his homework because he had ADHD. I thought, “Wow! I wonder what he would try to get away with if he knew he had extra chromosomes!” So, my husband Glenn and I chose to keep the information from him for a while until we thought he was old enough to handle the news maturely.

Last Thursday, Karen emailed me and said that “This American Life” was going to re-run our program. They wanted to know if we had any updates.

Sure! I have loads of updates! However, my “updates” keep overflowing in my life, so I didn’t have time to send them in!

I didn’t realize that they were airing the program today until I did a quick check on my blog to see my stats and realized I had loads of searches about that radio program! I looked and it aired today!

So… I will update you here….

Tim and I are doing great! We took a “sabbatical” from life for a while. Sometimes you just need to do that when you are overwhelmed. We are planning this week to look at college options for Tim at the community college that is about one hour away. Tim still writes his stories, but has yet to complete one. (the great part of ADHD…trouble completing things)

Tim has matured a lot in these past couple of years. He is an intellect and always has been, but now, his thoughts are becoming more realistic than before when he was thinking like a child thinks.

Even with our “sabbatical” he has been very busy. As we speak, he is with his grandfather helping him build fences on their property and yesterday they build a loft in the barn. He also has a small lawn mowing job that helps with his extra money and in turn he is helping our neighbors who are older and can’t really mow.

And, Tim is so compassionate and takes care of us probably way more than we take care of him! I have a very bad back, so I can’t get around as much as I used to. Tim is always considerate and if I even look like I am walking differently, he is the first to notice and will immediately take care of my needs. Last week, he and his dad went south of Houston to begin clean up after the hurricane. Unfortunately, Glenn’s back went out on the first day (yeah… maybe we are getting old! lol) so he was flat in bed for the week. Tim to the rescue! He cleaned up all the broken trees that were left in his granny’s yard and at the same time made sure his dad was ok. When they came home later in the week, Glenn was still stiff and trying to bend to put his socks on. Tim immediately grabbed the socks and helped his dad put them on. I thought back on those days, years ago, when the role was reversed and it was Glenn who put on Tim’s socks. To me…. it was a beautiful scene of love and compassion.

As for me, I have started this blog as well as another one to help those who are leaders of nonprofit organizations. You can see that here.

I am happily still the president of International Mosaic Down Syndrome Association and am currently working with a great group of people to plan our 09 Research & Awareness Conference in Cincinnati, Ohio. You can find out about this conference here. Yes! It is for ALL forms of Down syndrome!

I am writing a book right now…. but that is as much as I can tell you about that….

Our youngest son Garrett is fastly approaching teenage-hood, regardless of my objections. And the rest of our boys (Arron, Dustin and Stevan) are all doing well in their independent lives.

If you have come here after hearing our story and you have questions….. PLEASE ASK! I will do my best to answer them for you and I don’t mind at all!

If you have come here and you are a regular visitor or just stumbled upon this little corner of the world…. you too are always welcome to ask questions!

If you don’t ask—you won’t know! That is how I became the person I am today! I asked alot of questions to alot of people and although I don’t have the answer to everything, nor will I ever have the answer to everything… I know a heck of a lot more than I did before I asked!

Thanks for stopping by!

Don’t miss out on new articles! Click Here to subscribe and receive one email daily to remind you a new article has been posted!

Did you like this story? Click the Buzz Up button to make your vote! The more votes the more we spread awareness!

October is Down syndrome Awareness Month! This month I will be featuring a story about an individual with mosaic Down syndrome or Down syndrome each day. You will have the opportunity to get a glimpse into these families lives and how living with extra chromosomes has enhanced each of these individual’s talents and abilities as well as their family’s lives and their community around them.

I hope you enjoy this as much as I am looking forward to doing it!

To make sure that you don’t miss any of these stories, please consider subscribing to this blog. Subscribers receive a daily email telling them about the new article and enables you to click and go directly to this page. If you want to subscribe, just click here or enter your email address in the box to the right and you will get an email telling you about the new article as well as the capablities of posting your comments immediately without wait.

Now…. On to our story! I will start our 31 for 21 with my own story…

When Tim was 2 1/2 years old he was diagnosed with mosaic Down syndrome. I was told he would never read, he would never write, he wouldn’t learn and I was strongly “encouraged” to put him in an institution. I couldn’t imagine life without my little boy! I had him for these past 2 1/2 yrs and all of the sudden the doctors were telling me to forget I ever had him! Thankfully, I didn’t listen to the doctors and I told them that Tim would do all the things they said he couldn’t do and more!

Tim’s main problem was speech at the time. (this is what prompted his diagnosis) So, I worked with him daily on his speech and we just made it part of our lives. His speech increasingly improved and by the time he was in 3rd grade he no longer needed speech therapy. Today, he speaks as clearly as any one else on the street. Well… maybe if you don’t live in Texas you wouldn’t understand him, but you probably wouldn’t understand me either!

They told me he wouldn’t read….

Tim began reading words at 4 yrs old. I read books to him constantly and he had the advantage of having a brother 4 yrs older than him, who was constantly working on homework and working on flash cards to learn sight words. Tim learned these words right along with Arron and quickly they began competing on who could say the word the fastest. Tim became an avid reader and so much so that we had to take the books out of his room at bed time or he would stay up to read. When Tim was in 7th grade his school said he had exceeded the state standards in reading. At 13 yrs old, he was reading above college level!

The doctors who said he couldn’t read…they were wrong!

They told me he wouldn’t write…

Tim had a real difficult time with handwritting in his early grades. If he had received the Occupational Therapy that is available today for handwritting, I don’t think he would have had such a problem. But, eventually he got it down and now his handwritting is way better than my own. But, maybe the doctors meant he would not have the capabilities of writing down thoughts and ideas… When Tim was 12 he began writing short stories and these stories were so fantastic that we thought he had copied them from a book! Next to reading…Tim loves to write and has a beautiful collection of several short stories that he would like to complete into novels. (It is just a matter of him staying focused to complete it)

The doctors who said he couldn’t write…they were wrong!

They said Tim couldn’t learn…

Tim never was in special education and he was never “mainstreamed” either. Tim was in regular education with slight modifications to help him complete his work. (He has ADHD so he had trouble staying focused with too many problems on a page) Tim graduated with a regular diploma in 2005. Yes, he did struggle some and it wasn’t always easy for him. Sometimes the teacher would call out the spelling words too fast and he couldn’t write that fast. (although his spelling has always been far better than my own!) Sometimes he didn’t understand how to do certain things in class. But… every single child has trouble in some area in school and needs extra help. It doesn’t matter if they have extra chromosomes or not!

The doctors who told me he couldn’t learn…they were wrong!

No one can say “Your child will do this or not do that” because unless they have some great precognition, there is no way they can foresee what your child can do!

Has having a child with mosaic Down syndrome changed my life?

You Bet! I am most definately a different person because of Tim. He has taught me so much about life, and love and what should really matter in my life! Of course, I could say that about each of my sons.

Has it been difficult having a child with mosaic Down syndrome?

Most definately! I have had those times where I thought things would be easier if Tim didn’t have mosaic Down syndrome. But then, if Tim didn’t have mosaic Down syndrome I know that I would not be the person I am today! I wouldn’t be this calm, strong, assertive mom that knows how to reach out and get the things I need for myself and my children. I wouldn’t view the world the way that I do now. I wouldn’t rejoice in the things that most people take for granted. And, if Tim did not have mosaic Down syndrome, more than likely there would not be an International organization specifically to help those families whose children do have mosaic Down syndrome!

When you ask Tim how he feels about having mosaic Down syndrome he says that he is glad that he has it. Without it, he says he wouldn’t be the creative person that he is today.

And Tim is not only a creative person, he is very caring individual who can show great compassion for those in need. He is funny, intelligent, meticulas, and he is happy. Mosaic Down syndrome is not a major part of our lives. Mosaic Down syndrome is not who Tim is. Mosaic Down syndrome is something that Tim has, but it does not define him as a person.

The most important thing that I have learned in these past 22 yrs with my wonderful son?

THE ONLY HANDICAP A PERSON HAS ARE THE PEOPLE AROUND THEM! TM

Did you like this story? Click the Buzz Up button to make your vote! The more votes the more we spread awareness!

One of our members shared a story with us about her grandson who has mosaic Down syndrome. For the first two years of Preschool he happily went on his bus for the ride to school. Then, in Kindergarten and now, First Grade, every single day the bus came he would cry and have to be dragged on to the bus. He was clearly upset, but much to their dismay by the time he arrived at school he was fine for the rest of the day!

This past week, the bus came a different route and arrived at his house coming from the North instead of the South. For the first two years of preschool this was the route the bus took, but it was in Kindergarten that they decided to change their route. Upon seeing the bus come from the North, the little boy happily took his mom’s hand and walked up to get on his bus without a problem. Wondering if all this fuss the past two years, was all because of the change, the mother asked the bus driver if they could come from the North the next day.

The next morning, while getting ready for school, the little boy was fussing about getting ready. His mom told him that the bus would be coming the “right way” and he immediately stopped fussing and began getting ready for school. For the remainder of the week, the bus has come from the North and the boy has happily gotten on!

Something that we see as no big deal can be a very big deal to a child. And, when the child has communication delays and sensory issues, this just heightens the stress.

Tim has always been very strict about schedules and knowing what is going to happen next. He is not a spontaneous person and does not like surprises. Over the years, my entire family and I have just programed ourselves to always tell Tim about what is planned and what is going to happen in as much advance time as possible. For us, it is just a natural part of our lives and we really do not think anything of it. However, if something comes up where we have to change our schedule abruptly, I can not just say “Lets Go!”. Just recently this happened and the look of fear came over his face immediately. Luckily, Tim does not have a communication problem, like this little boy in the story is experiencing. Tim was able to voice his concerns and tell me how he felt about the abrupt change. We talked it out and I told him that I realized this was not on the schedule, but sometimes things come up and we do have to change our plans. I gave him a few minutes on his own to rationalize the change, and then he was fine.

It is very important to talk with your children, even if they have trouble communicating back to you, about what is about to happen and if any changes are to be expected. When Tim was very young, I would give him “count down warnings” before we changed to something else. I would say, “In 10 minutes we have to put the toys away so we can eat lunch” then I would tell him again in 5 minutes, 4 minutes, 3 minutes, 2 minutes, and then 1 minute. This allowed him to prepare for the change without abruptly being pulled away from his fun. I also encouraged all of his teachers to do this as well, and when they did, they never had a problem with him.

Too often, I see parents tell their children without warning that they are leaving the park or other fun place they are at. Immediately, the child breaks down into tears and usually throws themselves on the ground kicking and screaming. The parent is frustrated and starts yelling, or gives in and stays-both are bad examples for the child. However, if the parent gave their child a warning and let them know that they were about to leave, the child would have time to prepare for that change and everyone would be a lot happier in the long run.

I think many parents forget to talk directly to their children, especially when they have a communication delay. It is important to remember that even if your child can not communicate back to you, they still can understand what you say and if you give them the opportunity to transition before a change, things will be much easier on you and the child.

However, if you can stop any abrupt changes, like which way the bus comes to pick up your child, do whatever you can to make sure those kinds of changes don’t happen, so your child feels safe in his/her routine and everyone is a little happier.

A good example of how well you child can do given the opportunities to succeed is Melissa Bishop.

Melissa was our key-note speaker at IMDSA’s 2007 Research & Awareness Conference. Melissa’s mom Susan always did her best to give her daughter the best opportunities to succeed. She never told Melissa that she could not do something. Instead, she encouraged her to try.

After Melissa finished high school, she and her sweetheart, Adam got married. Then, they moved across the country to begin their lives and careers on their own. (Adam’s parents live in the same area, but they are completely independent)

The couple owns their own home (something I wasn’t able to do till much later in life) , they own a restaurant (maybe more than one by now…) and they have a beautiful little girl who keeps them on their toes as most toddlers do.

Did I mention Adam was blind?

So, Adam is blind, Melissa has mosaic Down syndrome, and look at all they have and all they are doing! Since Adam is blind Melissa does all the driving. And, she is way braver than I am, because she drives all over the country whenever they need to go somewhere! (I do too…. just not so brave about it! lol)

 A little extra surprise in this story…. Melissa and Adam are expecting their second baby!

Try your best to not put limitations on your child’s abilities. Remember to teach your child to say “I’ll Try” instead of “I Can’t” and watch their Abilities SOAR!