Life Goes On

Back when we were first married, my husband and I used to watch a television show called Life Goes On and the theme song was Ob-La-Di Ob-La-Da by The Beatles. If you're not familiar with this TV show, it's about an All-American family trying to live their lives amidst everyday trials and tribulations. Except for one difference, their son has Down syndrome.

My husband and I loved this show, and we watched it regularly, never knowing that years down the road we'd have a similar experience raising a son with DS.

My son loves to listen to music and he'll often find a particular song that he listens to over and over and over again. And I mean, over and over and over again. The other morning, I walked into the kitchen where he was listening to music and dancing (as he does). What song was it? Ob-La-Di Ob-La-Da. Suddenly, I was transported back to a time before I knew anything about being a parent and long, long before I knew anything about being a parent of a child with DS. I remember watching this show and thinking about the extra difficulties having a child with DS would bring and never thinking that would be me. I enjoyed watching the different episodes that explored having a child with DS as well as marveling at the actor, Chris Burke, who memorized lines and acted in the show.

I had no idea I'd be living a TV show that I loved to watch. I also had no idea of all the awesome and wonderful things having a child with DS would bring into my life--the different experiences, the new understanding, the opportunity to meet amazing people. And most of all, the blessing of having this little boy (who is soon growing into a young man) as my son. I've learned that different isn't bad, it's just different. And that's okay.

Isn't life funny? Life definitely goes on.

My Son is Not a Joke

I took my son to school today and walked him to the gym, as I do every day because that's where his class meets. After I dropped him off, I stood to watch him find his class and another, older, class walked past me with their teacher. I listened to the kids.

"Hey, look at me, I'm a retard," said a boy as he mimicked what he presumed to be the way a "retard" would act.

I don't think it was aimed at my son, or anyone in particular. I think the boy was just "joking" and having "fun," but I heard it.

I thought about how it made me feel and wondered what it would be like if that child's mother had been standing where I was. What if my son had walked past her and said, "Hey, look at me I'm a (insert racial slur)" and then proceeded with what he presumed would be the actions associated with that particular slur?

I'm betting she wouldn't like it. I'm even betting she would've insisted my son not use such language to refer to hers. In fact, I think she night have been outraged.

While we seem to be making progress in some areas of respect, I think have progressed little when it comes to respecting people with disabilities. It seems to be okay to make fun of those with disabilities. It seems acceptable to use the word "retard" when denigrating someone else. It's okay to act "retarded" and laugh about it. It's a big joke. Only my son isn't a joke.

He didn't ask for an extra chromosome. I did nothing to make him have that extra chromosome. He was born with it and he will live with it all of his life.

He is progressing, learning, and trying to do his best despite that extra chromosome. His extra chromosome does not define him and he deserves to be treated with respect, not be made the butt of jokes. We work every day to teach people this and, some days, I think that message is getting out. I see kids smile at my son, put their arms around him, and include him. Then I have an experience like today and wonder.

Yet I am hopeful that the world will be a better place for my son. I keep hoping that people will see him as a human being, not as a chromosome count. I keep working to send out a message loud and clear.

I may only have one voice, but I do have a voice, and I am going to use it.

My son is not a joke.

Behavior Problem?

After months of testing and discussion and eventually going to mediation with the school district, my youngest son moved from his neighborhood elementary school where he was not getting any services, to another school where he is now getting services. Apparently, in large school districts, such as the one we are in, the district can pool resources and assign certain services to certain schools. We had wanted to keep him in our neighborhood school so he could interact with neighbors and kids he goes to church with, but our neighborhood school does not offer any of the services he needs.

He moved to the new school about 6 weeks ago. Everyone at the new school is awesome and they've been patient as he's adjusted to his new surroundings, new schedule, and new people. Things seem to be going well. He's had a few instances where he didn't want to come in from recess or stayed in the bathroom too long, but we've been moving in a good direction.

He spends half his time in a general education classroom with peers without disabilities and spends the other half in a classroom where he gets individualized instruction and more intensive help. It seems to be working well.

His general education teachers are wonderful. Every day they send home a homework folder with what all the general education kids are doing as well as what my son's specific assignment is. Sometimes, they write notes on this paper (when he forgot to return a library book, when he wouldn't write his spelling test, etc). Monday, I glanced at the homework sheet and was upset to see the words, "hid" and "bit." I imagined him hiding in the bathroom or classroom and then biting some other student. I immediately talked to him about it and told him that wasn't okay. He just gave me a strange look, but I hoped he got the message. I want him to be able to attend his general education class and know that certain behaviors may prevent that. I thought about it and worried about it all night, especially because he'd never bitten anyone and hadn't ever exhibited that behavior at school.

Tuesday, I looked more closely at his homework paper, including the spelling words list. Guess what words are on the list? Yep. Hid and bit. Those were the spelling words his teachers wanted him to learn for the week, they were not a comment on his behavior. No wonder he gave me a strange look when I talked to him about it. He probably thought I was crazy (he may be right).

I had to sit down and laugh. I had been all worried about a behavior that didn't even exist because I hadn't looked closely enough at his homework paper.

Maybe I'm a little paranoid because I'm so hopeful he'll be able to spend time with his non-disabled peers. I'm just glad it was his spelling words, and next time, I'll take the time to actually understand his homework paper.

World Down Syndrome Day

Today is World Down Syndrome Day because it is 3/21, which represents the extra genetic material on the 21st chromosome.

Recently, my 10-year-old daughter was talking to some kids in her class and told them she has a brother with Down syndrome. They all said how they felt sorry for her and how bad it must be to have a brother with DS.

She responded, "What's there to feel sorry about? My brother is awesome and I love having him as a brother."
n the news, two teen girls have been accused of torturing a young man with an intellectual disability.

Why do people feel sorry for, or worse, mistreat, people with disabilities? Why?

The kids that said this to my daughter should not feel sorry for my son. He is so loved. He is happy. He lives in a safe home, has plenty of food to eat, goes to school, and will be playing baseball on a team next week. He has a wonderful life filled with lots of fun, joy, and laughter.

I think people are still so ignorant about DS, or other disabilities, and they fear what they do not understand. That fear leads to prejudice and can then lead to mistreatment. In the case of the teen girls, it was far worse than mistreatment, it was downright abuse and I hope they will be held accountable for their actions.

World Down Syndrome Day is to help make people aware of DS. I think most people know what DS is, or have at least heard of it, but I think very few understand it. They think it is a curse and a terrible thing. I didn't think much about DS before my son. Honestly, I was terrified of what it would mean to our family when he was born, but I have learned that my fear was totally unfounded.

Yes, things with him are different. It takes him a little longer to do things. So what? Why is it so important to be on a certain time schedule? I've learned to just enjoy the journey with him instead of stressing out over a time schedule. He eventually does everything his siblings do.

He is reading. He knows all of his letters, sounds, numbers. He's learning math. He loves to sing. He can run a computer like nobody's business. He loves music and is very interested in the piano. He likes to make people laugh. He comforts people when they are sad or hurt. He tells me he loves me and gives me kisses.

Down syndrome presents challenges for those who have it, but the biggest challenge is making people aware that those with DS are so much more like them than not. It isn't the DS that limits my son, it's people's attitudes about DS that limit him. People like to put him in a box. I say, get rid of that stupid box and let him be and do whatever he wants. Let him soar. See him as a person, not as a chromosome count.

For our family, we celebrate our son/brother/cousin/uncle. Sure, he has DS, but DS does not define him. Let's celebrate our similarities instead of focusing on our differences.

To me, every child is a gift no matter how he/she is wrapped.

My Son's Inventive Solutions

I've been homeschooling my youngest son in hopes of teaching him to read before he enters school, or at least has the tools to begin reading. He knows all of his letters and knows most of the sounds each letter makes. He's been sounding out words he sees. He also spells out the words he sees on packages and signs.

I've been using several methods to help him learn to read, including a set of flashcards with familiar words (like the names of family members and food items). I'm supposed to show him these cards (red lettering on 8.5 x 11 white cardstock) 3 times a day. That gets a little boring day after day. So I started having him stand across the room and then we'd count together and he'd run over to me, say the word, take the card, and then set it on the table. That worked for a while.

He decided he'd turn the tables and have me run to him, he'd say the word on the card, I'd say the word, then he'd hand it to me, and I'd set it on the table. After each card he'd say, "Good job."

Now he's invented a couple of new ways. He counts backwards before he tells me to come get the card and he also uses his Nerf gun to shoot at the word cards. Pretty inventive, I'd say.

Last night, he initiated a game of Duck, Duck, Goose while the family was sitting in the living room. We played several rounds and he understood exactly how to play, who he wanted to be the "goose," and where he needed to sit so he didn't get tagged.

Today, he wanted to play again. Unfortunately, he and I are the only two home. After tagging each other as the goose a few times, he invented a solution. He found some inflated balloons we had around the house (we had a birthday party last week) and he set those next to me as part of our game. And, when he tagged one of the balloons as the goose, he squealed with laughter as I took the balloon and chased him around the room.

This probably seems silly, but to me it showed me that he recognized a problem and came up with a solution. He was bored with the way we were doing the flashcards so he came up with a new, more interesting way for him to do it. He also saw that only two of us playing the Duck, Duck, Goose game didn't make sense so he solved it in the best way he could. He thought about it and came up with a solution.

He may not be talking in long sentences, but he's thinking and he's solving problems that exist for him. For me, that's progress and I'll take it.

My Son is Reading

Any of you who know me, know that my youngest son has Down syndrome. I have been homeschooling him this year in hopes of preparing him to enter school next year.

I have taught all of my children to read. I homeschool them for kindergarten so that I can make sure they learn to read. I believe that reading is the most important academic skill they can have because if they can read, then the whole world is open to them.

For most of my kids, I have used the Spalding method, which is a phonics-based program. I also used Hooked on Phonics for some of my kids. I believe phonics-based approaches give kids the tools to decipher words and think it is the best way to teach kids to read.

Then I started teaching my youngest son. Everything I knew, or thought I knew, went out the window. I had to start from scratch and figure out how to best teach him to read. I read a lot of articles and books that said I needed to use sight words with him. So I made up flashcards with familiar words. We did that for a while, but it seemed like he needed more.

So I went back to teaching him the sounds of each letter. We do sound cards each day and he has been sounding out words now when we read. He has also learned many sight words. He still struggles with how to say the words, but he knows them.

One day, I suddenly had the idea to take the Hooked on Phonics books that I've used and make a flashcard for each word in the book beginning with book #1. I say the word and have him pick out the flashcard. I also say a sentence from the book and then have him find the corresponding words on the flashcards and lay them out into a sentence. It's working really well. He is not only recognizing the sight words, but he's also sounding out words using his knowledge of the sounds of the letters, which means he's improving his verbal skills.

The other day, we read Brown Bear, Brown Bear. I was astonished, and excited, when he started reading the book. I read the first part and he read the second part on each page. And he actually read it verbally. Yay!!!

So I know that he's beginning to read and, even better, he is saying words and using his verbal skills. It's been a long time coming, but I am so thankful to see this progress.

World Down Syndrome Day

Today is World Down Syndrome Day because it is the 21st day of the third month: 3/21, which recognizes the third replication of genetic material on the 21st chromosome.

I've seen lots of photos and posts on Facebook. What I love about the photos is the diversity of the people who live with DS. They have different skin colors, hair colors, eye colors. Different hairstyles and clothing styles. And I think that's the point. People with DS may share a common condition, but that doesn't make them the same. They have likes and dislikes, weaknesses and strengths, talents, dreams, wishes. Just like you. Just like me.

They are more like you and me than not. Yes, they are different in some ways, but is different bad?

My son has a distinct personality. He loves SpongeBob. He loves to jump on the trampoline, run around the house, and play baseball. He loves to play on the iPad. He doesn't like our big, black dog and he doesn't like to draw or paint or do art projects very much. He'll eat most anything, but loves ice cream. He'd eat ice cream for all three meals if I let him. He loves pudding, apple sauce, and string cheese.

He can recite the ABCs, is beginning to read simple books, and can make sentences out of words on index cards. He has a great memory and has a ton of energy all the time. He loves Dr. Seuss books and we read them over and over and over again.

He doesn't use speech much yet, but he can communicate whatever he wants just through facial expressions. pointing, and pantomiming. He uses signs occasionally.

What matters most is that he's happy. And we are so happy to have him in our family. He is such a light. I am so thankful he has been part of my family for seven years. I look forward to watching him grow and learn. I know he will do great things with his life and I am celebrating World Down Syndrome Day in my little part of the world.

Tim's Place

Happy Birthday to My Little Man

Seven years ago I had my youngest son. I went into the birth expecting it to be much like the previous nine. I expected to bring my healthy baby home the day after the birth for that very important family bonding time.

The doctor had decided to induce me since we live 30 miles from town and I have quick deliveries. I thought the induction date was early but it worked well with my other kids' schedules and it was convenient. Besides, I was old and tired of being pregnant.

The induction took much longer than others had taken and I knew the baby wasn't ready, but once you start an induction you're committed to it. Finally, it was time and I only had to push once and he came flying out. I was both elated and relieved.

While I was holding my baby, my doctor came in the room and pulled him out of my arms, examined him and said, "He has some characteristics of Down syndrome You should have him checked." And then he was gone. Just like that.

I was still stunned when the nurses came to get him to take him to the nursery and clean him up. Not long after, I was stunned again when the nurse returned to tell us his lips were blue and he needed oxygen. Not long after that, we were told that since he probably had Down syndrome he was going to be be life-flighted to another hospital. I was so stunned I could hardly talk or even catch my breath. The flight team arrived with what looked like a glass coffin and the nurse told us he probably had the heart defect and/or lung defect and he may not even live through the flight. Talk about conflicting emotions in the matter of just a couple of hours.

Long story short, he ended up in the NICU in another hospital for basically no reason. They could never tell us why he was there. His heart was perfectly normal. His lungs were fine. His other organs were all normal. He didn't have newborn pneumonia or any other illness. I'm sure it happened for a reason and I learned a lot from it, but it was an emotional roller coaster. We did have the karyotype test done and although the geneticist thought he might have Mosaic Down syndrome, he was diagnosed with Trisomy 21 or Down syndrome.

And thus we started on a journey that has both been painful and joyful. It is painful to realize that many people will never see my son for who he really is. They will judge him because of the way he looks, the way he speaks, the way he acts. They will make assumptions about him that aren't true. They will think they know more about him than they do. And they will treat him accordingly.

But it has also been filled with joy and wonderment. It is amazing to me that even with the extra genetic material in his chromosomes he can still grow, learn, laugh, love. He has likes and dislikes. He can program the DVD player, find any site he likes on the internet, use features on my phone I didn't know existed. He is his own person with his own definite personality. He loves to watch SpongeBob, eat corn dogs, and play in the iPad. He is such a light to me. And he has taught me to be patient, to trust that all will be well, and that life isn't a race to rush through to the end. It's meant to be enjoyed.

Sometimes he makes me crazy. But he also he makes me laugh. He makes me smile. Most of all, he makes me grateful. He is exactly who he is and I am honored to be his mother.

Are We Any Better Than Hitler?

For the book club reading this month, I was reading, Sarah's Key. It is an absorbing novel about July 1942 when French citizens, who happened to be Jews, were rounded up and sent to their deaths. 13,000 French Jews, mostly women and children, were exterminated by order of Adolf Hitler.

The author alternates between the story of a young Jewish girl living in Paris in 1942 and the story of a middle-aged woman in modern times who is assigned to write a story about this event in French history. An event the French prefer to forget.

While the story is well-written, I admit that I stopped reading it. I'm not a fan of profanity and when I began a passage with the F-word I stopped reading the book.

Up to that point, I was riveted by the story and thought about the cruelty extended to a group of people simply because they were Jews. Hitler decided that they did not deserve to live simply because he thought Jews were inferior. Who gave him that right? And why on earth did so many people follow him? Why were so many willing to kill people--children especially? How could anyone do something like this? Why did so many turn their backs on the Jews and refuse to stop the insanity surrounding the Holocaust?

Then I have to ask myself, how are we, in our society, any different than Hitler? We have laws that protect the practice of killing innocent children every day. Over 3000 babies are aborted in this country every day. Yes, every day. Why? The majority are aborted because they are an inconvenience, because their mothers have decided they don't have the right to live. And we have groups like Planned PArenthood that applaud this so-called right.

For anyone who's read my blog before, you know that I have a son with Down syndrome. 9 out of 10 women whose pregnancies are diagnosed with Down syndrome choose to terminate the pregnancy. They choose to kill that growing baby simply because it has too many chromosomes. So I ask you, how is that any different than what Hitler did? We are outraged that he thought Jews were inferior. We say he was the devil himself to have killed so many innocent people, so many innocent children who didn't deserve to die. Yet, we consistently protect the right of women to do the same thing. Over and over and over again.

We like to see ourselves as advanced and pretend that our society is nothing like Hitler's. And yet, we are no different. Our politicians fight to protect a woman's right to kill her baby, as if that baby has no rights. Why? Because it is inside its mother's womb? Because it can't care for itself? If we were to apply that reasoning across the board then we'd have to say that all children fall into that category.

I cannot understand why any human being would do what Hitler did. I cannot see how he could justify any of his actions. I do not understand killing others because they seem to be inferior. I also do not understand how women's hearts can fail them and they can justify killing their own babies. In our country, women use abortion as birth control and our government wants to force businesses to allow women to do so through the healthcare they provide to employees, even if that business has strongly held religious beliefs (which is a violation of the business owner's rights). We are on the same road as Hitler once was. We are deciding who has the right to live and who does not. We pretend that we are better than Hitler, but we are not. Today we decide unborn babies can die at the whim of their mothers. What will tomorrow bring? When we disrespect the life of anyone, we disrespect the lives of everyone. How can we ever hope to teach people to stop killing innocent people in theaters and schools when we allow, and even advocate, the killing of our most innocent?

I think Mother Theresa said it best, "But I feel that the greatest destroyer of peace today is abortion, because it is a war against the child - a direct killing of the innocent child - murder by the mother herself. And if we accept that a mother can kill even her own child, how can we tell other people not to kill one another? How do we persuade a woman not to have an abortion? As always, we must persuade her with love, and we remind ourselves that love means to be willing to give until it hurts. Jesus gave even his life to love us. So the mother who is thinking of abortion, should be helped to love - that is, to give until it hurts her plans, or her free time, to respect the life of her child. The father of that child, whoever he is, must also give until it hurts. By abortion, the mother does not learn to love, but kills even her own child to solve her problems. And by abortion, the father is told that he does not have to take any responsibility at all for the child he has brought into the world. That father is likely to put other women into the same trouble. So abortion just leads to more abortion. Any country that accepts abortion is not teaching the people to love, but to use any violence to get what they want. That is why the greatest destroyer of love and peace is abortion. "

And, "It is a poverty to decide that a child must die so that you may live as you wish."

If we want society to respect life, if we want to stop the violence, we must first protect all human life.

He Said His Part

I have been working and working with my youngest son on his speech. We have a fantastic speech therapist and he has progressed so much in the last few months. I'm so thankful that he knows the sounds of almost every letter of the alphabet and is trying new sound combinations every day. Since the flash cards I'm using to help him with his speech have both a picture and the word on them, he is learning to read as well. By the end of the week, he can not only say, but also read, most of the words we've been working on. We also review cards so he can remember the words from previous weeks, and he is still able to read them. Yay!

He was assigned a short part for the children's program at church. And he did it. He actually did it. All the words, "I choose to follow" and then he held up a picture of our prophet, Thomas S. Monson, for the whole congregation. And he said all four words together without me prompting him. I was thrilled. My husband and my sister both had tears in their eyes. Such a simple thing, but yet so huge.

We've been working really hard and to see some progress is wonderful. I never knew what went into learning to speak. I took it all for granted with my other 9 kids--they started talking (and most have never stopped to even take a breath) and I never thought much of it. Working with my son has taught me to be grateful for even the smallest things.

A Day in the Life

When my son was born and then diagnosed with Down syndrome I was worried he'd be a blob. So wrong. So, so wrong. Last week he decided it would be fun to shove a toy in the drain of the bathroom sink. And then turn the water on. Yep, water overflowed the sink and there was about an inch of water on the floor. We ended up removing the entire drain to take the toy out and replacing it with a new drain. While we were at our speech therapy appointment, the therapist left her phone on the table. My son quickly got into her text messaging and sent texts to her friends. I'd meant to warn her not to ever leave her phone within his grasp because he's an electronics whiz. (His favorite is to call 911, so I was relieved he hadn't done that). Yesterday, I took some leftovers out to our dog. When I came back to the house, my son had locked me out of our glass door (and all the other doors were locked). He stood there, grinning and laughing. I asked him to open the door. No way. Begged him. Not a chance. Bribed him with a treat. No dice. Told him he was in trouble. He simply laughed and left me fuming on the front porch. Thankfully, one of my other kids was inside and finally let me in after about ten minutes of standing there. Last night, I had to go to town to take my older son to repair his braces. We stopped at Walmart to get a few things. I called home. Who picked up the phone? My youngest son. He proceeded to "talk" to me. I asked him to take the phone to someone else. He said no. I begged him. Not a chance. Bribed him with a treat. No dice. Told him he was in trouble. Again, he laughed and kept going on and on in gibberish. I finally hung up. A blob? Not even close. Just a day in the life with my son.

World Down Syndrome Day

Today is World Down Syndrome Day. March 21st. 3/21. Trisomy (3) of the 21st chromosome.

Some things I've learned about Down syndrome:

1. It isn't scary
2. It makes me look at things differently
3. Those with DS still have unique personalities and aren't blobs
4. People with DS have talents
5. People with DS can learn, understand, and remember
6. There's still many misconceptions about DS
7. Those of us who love people with DS just want others to accept them for who they are.
8. People with DS don't want to be cured, they want to be loved and respected
9. People with DS aren't happy all the time, they experience a range of emotions
10. Though there are challenges, it's challenging to raise any child

In a perfect world, we'd recognize that those with DS are not the ones that are handicapped. They are not the ones who have the disability. Those of us without DS are truly the ones with the handicap and disability because too often we let things that don't matter get in the way of what's important. We decide we don't like someone because he/she was unkind to us. We hold grudges. We are judgmental. We have conditional love. We can't see past imperfections. We let pride color our decisions. We are selfish and self-centered. We don't want to be around someone who is different. We are too uptight to enjoy life. We don't laugh enough. We don't hug enough. We don't love enough.

Today, let's celebrate those who have that extra chromosome and realize it isn't a bad thing. People with DS can and do offer wonderful things to our society. We need to be willing to see the person inside instead of being distracted by what's on the outside. I have never met anyone who, after taking the time to know someone with DS, regretted knowing that person. I have never met a parent who wished he/she didn't have his/her child with DS.

Here are a few photos of my son who has his own distinct personality. He is full of love and life. He makes us laugh and brings a joy to our home that's indescribable. I am thankful every day that the Lord chose me to be his mom and only hope I can be the kind of mom he deserves.

Sight Reading Cards

Any of you who have read my blog know that I have a son with Down syndrome. He is 5 and is currently enrolled in a virtual kindergarten class. He's doing well. He continues to surprise me with what he learns.

As much as I love seeing him learn the kindergarten curriculum, I am more interested, at this point, in helping him use speech as his primary form of communication. To this end, we have been working on sight words. I've made flashcards out of index cards and I've written down the words that are most useful and pertinent to him.

Every day we go through flashcards. To introduce some new words this week we decided to include the whole family. I read the person's name on the card, showed my son the name, and then asked him to give it to the correct person. I want him to associate those words/names with the people in his life. We then went around the house and put flashcards on the refrigerator, oven, dishwasher, bathroom, plate, cup, bowl, spoon, knife, fork, table, and chair. I'm hoping this will form a connection in his brain between the words and the items they represent.

I've also introduced him to names of animals, clothing, colors, and food by showing him the word and then associating it with a picture and/or sign. That seems to work very well.

A great idea someone shared was to take a favorite book and make sight words from the book so the child would then be able to read that book.


I don't send my kids to kindergarten at school because I prefer to teach them at home that year to make sure they learn to read and understand simple math concepts. I have taught my kids to read using a phonics program and all of them have entered school reading, some even reading 2-4 years above grade level. I'm sold on phonics programs.

Then, I had my son. I've learned that phonics is much harder for him to learn than sight words. I've had to relearn and reteach myself so I can work with him. It feels like I'm doing this all backwards. But he is learning and that's what's important.

And I'm learning, learning, learning, I'm thankful for the opportunity to see reading, and learning, from a different angle. Supposedly when kids with DS master over 200 sight words, they begin  to speak more. I'm sure hoping that's true because I can't wait to hear all that's on my son's little mind.

Book Giveaway

Today is the last day of the month and the last day to enter my contest to win a copy of my book The Upside of Down. It's easy to enter. The rules are here. You might want to enter to win a copy for yourself or maybe as a gift for someone for a birthday or Christmas.

October is Down Syndrome Awareness month. I've discovered there are still so many misconceptions about DS. People are still so fearful of DS and that tends to breed prejudice. My son does have some challenges, but he also has talents and strengths. He is currently in speech therapy so he can learn to better communicate verbally. He is also still working on potty training. But, he is also doing well learning his letters and he's reading words from flashcards. He's also a whiz on the computer and can use the DVR remote better  than I can.

He signed his part in the Primary program yesterday and it was very sweet. He also stood proudly with all the boys while they sang, I Hope They Call Me on a Mission. He wore a suit, white shirt, tie, and "future missionary" name tag. He was adorable.

He has such a funny sense of humor and loves to make others laugh. He loves to jump on the trampoline. He loves to eat pudding, string cheese, and apple sauce. His favorite cartoon is SpongeBob (I think it makes his brains fall out his ears, but he loves it and can even say SpongeBob). His laugh is infectious and he has the brightest eyes.

Would I wish a child with DS on anyone? Absolutely not. I would only wish a child with DS on someone who would be thankful for such a blessing. I would only wish a child with DS on someone who could see beyond the challenges and see the child the same way that Heavenly Father sees him/her. I would only wish a child with DS on someone who would value that child and do his/her best to allow that child to reach his/her potential. Not everyone is cut out to raise a child with DS--many of us, like me, never knew we had it in us. Having a child with DS does bring challenges, but those challenges are so minor compared to the tremendous blessings.

I may not have planned to have a child with DS, but I am ever so grateful that Heavenly Father entrusted my son to me. I have learned far more from him than he will ever learn from me.

Homecoming Queen

This story warms my heart and gives me hope that kids with Down syndrome can enjoy the same things as kids without DS. I love the expression on this beautiful young woman's face when her name is announced. They say everything is bigger in Texas--apparently so are the hearts of the voting student body in this high school.

I hope we can all see people with DS as people, not as chromosome counts.

Thanks to Elodia Strain for posting the link on the Writing Fortress blog.

Down Syndrome Awareness Month: Book Giveaway

In recognition of Down Syndrome Awareness Month I am going to give away a copy of my novel, The Upside of Down. While my book does have a sub-plot about DS, it is not about DS. The story is about an LDS woman who thinks she has indestructible faith until her life is turned upside down and she must decide whether or not she still has faith. The title is a play on words.

Too many people still have misconceptions about Down syndrome. I didn't know much about it until I had to learn. Since then, I've realized that people with DS are much more like those of us without it than not. They have distinct personalities, likes and dislikes, strengths, weaknesses, talents, dreams, struggles, etc. Because their struggles are more visible, they tend to be targets of ridicule and name-calling. Many people in our society are still ignorant of what people with DS can do and how people with DS can make the world a better place.

We become so focused on perfection we fail to see the blessings of imperfections. Currently, the medical profession is working to eliminate DS from our society. Not by curing it, but by preventing it through abortion.  Specialized testing is now available earlier in pregnancy so more pregnancies diagnosed with DS can be terminated thereby practicing selective birthing.

The message: those with DS are sub-human and should not be allowed to live simply because they have an extra chromosome. Sounds Hitleresque to me.

I want to make people aware that while parenting a child with DS has its unique challenges, it also has great and wonderful blessings. I can't imagine my life without my son. I have found great joy in the simple things I took for granted with my other kids. I have learned patience and acceptance and total reliance on my Heavenly Father to guide me in how to best serve my son. I've learned things I did not learn with my previous nine children. My son's life has been a gift to me.

So, my gift to you is a chance to win a copy of my book. The contest will run through midnight, October 31st.  I will use Random.org to choose a winner on November 1st. If you'd like to enter:

1. Become a follower--1 entry
and/or
2. Tell 3 friends about my book--1 entry
3. email me at talleyrl(AT)yahoo(DOT)com or leave a comment here to let me know what you did.

Thanks for your interest!

Speech Therapy Rant

I am quite aware that my son has Down syndrome. I have been aware of that for over five years. I also freely admit that he has a speech delay and may have other struggles down the road. It is no secret that he has Down syndrome and I took off my rose-colored glasses years ago.

I have never sent any of my children to pre-school or kindergarten. I am a SAHM and I have chosen to teach all of my children to read and do math so when they enter school in first grade they are prepared. My children enter school reading 2-4 years above grade level. I take my responsibility as a parent very seriously and want to make sure my children are life-long learners. Not all parents would make the same decision as we have regarding pre-school and kindergarten. We are fortunate that we have the opportunity and freedom in our country to make the decisions we feel best serve our individual children and it does no one any good to be judgmental of those decisions.

For the second day in a row, I was judged for my decision to homeschool my son. I was chastised by a professional today who has never met my son and knows nothing about him. I was calling to get information about speech therapy in my area and instead was treated like a horrible mother because I did not enroll my son in school at three years of age so he could receive all the services he needs. Umm, excuse me? How can someone who has never met my son decide what services he needs? Unless of course he's lumped into the "Down syndrome box" where every child with DS needs every available service. Any child that needs services should absolutely receive them, but I strongly disagree with the idea that all kids with Down syndrome are the same anymore than all kids without Down syndrome are the same. Not all kids with Down syndrome need all services. My son no longer needs physical therapy and has never needed occupational therapy (according to his doctor and previous therapists).

He does need speech therapy but because he is not enrolled in school he cannot receive it unless it is through a private speech therapist. The problem? Finding a private speech therapist is next to impossible. So, my taxes go to pay for these state services but my son cannot use any of them because he isn't in school. Did it occur to anyone that one of the determining factors for my husband and I to feel comfortable in sending him to school will be his ability to communicate verbally? The very service they are denying him is exactly what he needs to be able to attend school in the future.

My son is not ready for school away from home yet and we can make that decision because we are his parents and know him and his abilities better than anyone else. In fact, he is currently enrolled in a virtual kindergarten program we do every day at home and he's doing fine. He can match letters and recognizes all the letters of the alphabet. He understands "the same" but not "different" yet. He is also learning his numbers.

Don't get me wrong, he can totally communicate but he needs to be able to do so verbally. All I want to do is find a therapist that can help him do that.

(dis)Abilities and the Gospel

From the back cover:

Each day, parents and church leaders struggle to teach individuals with special needs. Using helpful information, real-life stories, and a touch of humor, (dis)Abilities and the Gospel provides ways for you to effectively teach people of all ages with autism, Down syndrome, bipolar disorder, memory loss, and other disabilities.




Inside this useful guide, you’ll find

• Guidance for building strong family relationships
• Steps to teaching prayer and scripture study
• Practical and creative teaching tips
• Programs to help with transitions, communication barriers, and behaviors
• Techniques to help others feel welcome and valued


Find the answers you need and overcome the challenges of teaching the gospel. (dis)Abilities and the Gospel will help you develop each person’s ability to learn and grow as you build peace in your home or classroom.


(dis)Abilities and the Gospel is a resource that may be read, reread, and used many times. . . . The authors have beautifully woven the frustrations that so many people have experienced into an action-living plan to help children with special needs.


—Lloyd Kinnison, PhD. Texas Woman’s University, Special Education Department


This book is an unexpected and very welcome gift to the community of churches and their leaders. It addresses so many of the problems that children, young adults, and adults with disabilities face in church activities.


—Brenda Winegar, Early Interventionist/Cofounder, Kids on the Move

I LOVE this book. I can't say enough good about it. Really. I read through it prior to publication and anxiously awaited its publication because it's such a wonderful book that is so badly needed.

As a former Primary President, Primary teacher, YW leader, and as a mother of ten active, energetic children I think this book is a must-read for anyone working with, teaching, or raising children. Yes, it's intended use is to help those who work with kids with special needs, but as I read and reread it, I was struck by how much of it is applicable to children without special needs.

The authors offer honest advice about how to cope with childen with special needs but the advice, tips, ideas, and other helpful information can be applied to all kids. I've worked with plenty of kids who are wiggly (right now I'm the Sunbeam teacher so believe me, I know wiggly) and these techniques can be applied. I LOVE the practicality of this book. It isn't some long discourse on special needs but is truly a useful guide with ideas people can implement immediately.

(dis)Abilities and the Gospel also offers thoughtful answers to commonly asked questions about people with special needs. I have wonderd if my son will be able to be baptized, go to the temple, and get married. Of course, each case is unique but the authors offer scriptures and quotes from the brethren that have helped me as I consider his future.

My son is only 5 so he hasn't attended school yet and he's barely started Primary, but I plan to give teachers both at school and at church a copy of this book. I love the idea about a personal portfolio parents can give to teachers. In my experience in public school, kids tend to be placed in a box. A personal portfolio with details about my son's strengths as well as areas he might need help may break through that "box," at least I hope so. Kids with special needs have such varying abilities and sometimes we focus on what they can't do. This book reminds us that we are all children of God and we all have abilities. I love that about this book. It's so positive.

I have met both of the authors and can say without hesitation they truly love and understand those with special needs. I have great respect and admiration for both Lynn Parson and Danyelle Ferguson. They have worked tirelessly to bring this book into the world and I am very grateful to each of them.

As a mother of a child with Down syndrome it's my great hope that the world will be a better place for him, that people will be more educated about special needs, and that he will have opportunities to learn and grow and become the man he can be--this book helps push my hope forward. Everyone should get a copy of this book, especially if you may work with a child with special needs.

I think people fear those with special needs because they are different and that fear breeds prejudice. But, aren't we all different? Don't we all have challenges? Don't we all have abilities? Using the guidance in
this book can help us to work together to not only understand those with special needs better but to teach them more effectively.

You can purchase (dis)Abilities in the Gospel: How to Bring Those with Special Needs Closer to Christ at Amazon. It is also available in bookstores.

To learn more about the fantastic authors:

Danyelle Ferguson

Website: http://www.danyelleferguson.com/
Blog: http://www.queenoftheclan.com/

Lynn Parsons
Website: http://www.lynndparsons.com/
Blog: http://lynndeniseparsons.blogspot.com/

CONTEST:

Enter to win one of two $25 Amazon gift cards and a free 20 minute consultation with Danyelle! You can ask her about parenting, church surivival, adapting lessons - or even about writing and publishing. Two names will be drawn on June 30th & July 22nd. Each drawing will include 1 winner of a $25 Amazon gift card and free consultation; and a second winner of a free consultation. Winners will be announced on http://www.queenoftheclan.com/ There are many ways to enter. You must leave a comment on the reviewer’s blog letting us know what you’ve done. Please include your email address.

1 Point Each:
- Leave a thoughtful comment about the blogger’s review.
- Add the book to your “to-read” list on GoodReads
- Follow the reviewer’s blog
- Follow Danyelle’s blog
- Follow Lynn’s blog
- Follow Danyelle on FB
- Follow Lynn on FB
- Follow Danyelle on Twitter @DanyelleTweets
- Follow Lynn on Twitter @ParsonsLynn

2 Points Each:
- Tell your friends about (dis)Abilities and the Gospel on Facebook with a person links to Danyelle Ferguson & Lynn Parsons
- Tell your friends about (dis)Abilities and the Gospel on Twitter with links to @DanyelleTweets

5 Points:
- Interview Danyelle or Lynn for your blog or write a blog post about why you’re excited about (dis)Abilities and the Gospel. Be sure to leave a direct link to your post in your comment so we can visit and say hello!

Yes, I did receive a complimentary copy of this book but it in no way affected my review.

Down Syndrome and Mistreatment

A girl with Down syndrome was denied an airline ticket on British Airways simply because she has Down syndrome. This 12-year-old young woman attends a mainstream school, reads on grade level, and has traveled with her church group. But when her mother called to purchase a ticket from British Airways she was told her daughter could not travel.

Here's the link to the article http://tinyurl.com/69vbff7.

Of course, this article bothers me. It goes to show that as a people we aren't as advanced as we think we are when it comes to treatment of people with disabilities. Apparently, plenty of ignorance still abounds when it comes to Down syndrome.

Admittedly, there are those with DS who could not travel alone, but there are also people without DS who should not travel alone. Just because someone has DS doesn't necessarily mean they can't do something and to automatically assume so is wrong and cruel.

Julie Bellon reviewed my book on her blog. The review was awesome, but the story she shared about the young man with DS was absolutely wonderful. It gave me tears. If you want to read an inspiring blog post about DS read this one.

I think what bothers me the most about my son having DS is the way people, like this British Airways employee, will treat him. He's already been called "retarded" by a neighbor. My son has a speech delay and we're still working on potty-training, but he's a human being with feelings. He didn't ask to have an extra chromosome  He just wants to live his life. He may have other challenges down the road, but that doesn't make him less of a person.

I'd love to meet someone, anyone, who doesn't have at least one challenge in life. We all do. It's part of being human. Yet, because people with DS have challenges that are more visible some feel it acceptable to mistreat them for it.

I guess the real question is: why do we ever feel it acceptable to mistreat anyone?