My Son Speaks Swahili

I'm thinking that when my son was in line waiting to come down to earth he stood in the wrong line. Instead of standing in the "I'm going to an English-speaking family" he stood in the "I'm going to a Swahili-speaking family."

He has no problems being vocal and even animated as he "speaks." It's just that the "words" he uses are not English. Maybe if we took him to Africa everyone could understand him.

He's been launching into long stories, taking breaks to laugh, and then resuming his discourse. I just wish I could understand some of it. I'm so anxious to know what's on his little mind.

He is recognizing letters. My iPod has an app (free) that shows some letters and then it says, "Pick the letter G," and he taps the screen on the letter G. He gets most of them right. I was surprised when he got the letter Q correct. I'm happy that with audio prompts he's finding the right letters. The best part is he thinks he's playing a game but he's actually learning something. I've found many free educational apps for my iPod and he loves playing them.

I'm sure i's speech will come eventually, but until then, maybe I should start learning Swahili.

Disturbing Trend Toward Hitlerism

I read an article about a researcher who has dedicated his life to finding a way to help people with Down syndrome. After his daughter was born and diagnosed with DS, he changed his research emphasis from the brain to specifically studying DS. 

In this article, he pointed out that another group is working just as hard as he is. This group is dedicated to preventing DS. At first, I thought it meant they would be able to manipulate the genetic material to undo DS, but in further study, this group is actually working to make more testing available so people can abort pregnancies earlier. This group is advocating killing babies that are "imperfect" and have an extra chromosome.

As I've thought about this, my mind goes back to what I learned about Adolf Hitler. He wanted to create a "super race." He decided that only certain people should live and as a result millions of people were butchered. He was a madman out of control in his pursuit of perfection. And he talked thousands into following him.

Everyone is appalled at what he did to the Jews and those he determined were not suitable to live anymore. He gassed them, experimented on them, shot them, and treated them inhumanely as if they were no better than the dirt under his shoe. He did his best to eradicate the world of "imperfect" human beings and thousands enabled him to do so. A few very brave people stood up to his tyranny and protected those he targeted. To this day, we teach our children what a monster Hitler was for murdering so many people simply because he thought they didn't deserve to live.

And yet, our society embraces the idea of aborting babies who are "imperfect." We fund research and encourage people to develop better testing so we can eradicate those who are not perfect. Our society acts as though it's noble to rid a couple of an "imperfect" child by allowing them the right to abort that baby.

How is that any different that what Hitler did? How are we any better than the man responsible for so many deaths? Apparently, we haven't come very far from Hitler's idea of perfection and the pursuit of that perfection to the point of terminating those who do not meet the definition.

We may see ourselves as an advanced society but how advanced can we be when we encourage selective births by terminating those we think are imperfect?

Requiring Verbalization

We've been busy painting and rearranging bedrooms so I haven't had much time to blog.

But, this summer has been great for my son because he's had so much interaction with his siblings. One of his sisters is especially good with working with him. She spends a lot of time playing with him and urging him to use words. He loves to be with her and usually chooses to sit with her or play with her because she's spent so much time with him. I've loved watching their relationship develop over the summer.

We've all made a goal to make him use words instead of signs. Today, he wanted some of his brother's pancake so he made a cutting motion with his hand to indicate his desire. Of course, we all knew what he wanted. We almost always know what he wants, but when we allow him to use signs we aren't helping him to develop his verbal skills.

He asked me for a drink this morning by signing it. I made him say "drink" before I gave it to him. He always signs "thank you" but now we're making him actually say the words. I think if we are more diligent in making him use words instead of signs he'll advance in his verbal skills better.

That's easier said than done, but I need to be more committed in requiring him to be verbal. I think he can be much more verbal than he is but signing is easier so he relies on that. I hoping to pull more verbalization out of him in the next few months.

Mr. Hilarious

At least I think he's hilarious . . . .

Now he's a cool dude . . .

Like his peace sign?

My Newest Fish

We spent last weekend in Provo, UT. We had a great time because we were all together. I love that my older kids live in the same place so we can go visit all of them at once. I love having all of us together.

My oldest son and his wife are house shopping so we visited several homes in the Spanish Fork area and we dragged all of the kids with us. After a long day, we decided to take everyone swimming at the Provo Rec. Center (we tried to go to Seven Peaks but it was way too crowded).

My kids are all fish. Child #4 was swimming around the pool (with floaties) when she was 18 months old. She had no fear of the water at all. In fact, none of my kids have ever feared the water except for my youngest son. He usually hangs onto his dad for dear life when we're swimming. He'll splash a bit but only if he's still clinging to one of us. He's never been one to brave the water much.

This time he was with his oldest brother in the pool and he was still a bit fearful. When his brother showed him that he could touch the ground and still have his head above water he instantly changed into a water-lover. I was shocked to see him walking through the water splashing kids and laughing. He had a great time and he wasn't afraid. Yay!

I grew up next to the ocean and I swam all the time. I spent every summer at the beach (I have the wrinkles to prove it). I love the water and I want my kids to love, and respect, the water. I wasn't sure if my youngest would ever enjoy swimming but this weekend proved that he does. He's my newest fish. 

People with Special Needs Have Talents Too

Julie Coulter Bellon, a popular LDS author, has posted a review of my book, The Upside of Down, on her blog. The review is wonderful, but I absolutely loved the experience she shared while working in the Special Needs Mutual program. It gave me tears as I read about this young man. If you have a chance, please go read her post, it's so uplifting and such a beautiful testament that people with special needs have talents just like everyone else.

Julie's blog post.

Thank you, Julie, for such a kind review and for such an inspiring message.

Grandpa and Abortion

My grandparents raised my sister and me after the death of both our parents. I'm very thankful they were willing to take on two little girls in their retirement years and raise us. I know they did the best they could, but Grandpa and I never really saw eye-to-eye. He hated the Mormon Church and always encouraged me to leave it. He only had one rule for me growing up: never come home with a baby. He told me I could experiment with whomever and whatever I wanted as long as I never brought home a baby. I could get pregnant I just couldn't bring the baby home.

While many teens might have loved only having one rule, I didn't. And I chose to live my life very differently. I found the LDS Church and hung onto it for dear life while traversing the tumultuous tides of adolescence. Today, I am ever so grateful that I made those choices early on.

Grandpa was in favor of abortion. He used to start arguments with me about it and maybe that's why I feel so strongly about it now. I remember talking about a friend of mine, who was married and quite young at the time, whose pregnancy had been diagnosed with Down syndrome. Grandpa asked how far along she was and when I said she was halfway through the pregnancy he said, "Oh, it's too late to get rid of it." I still remember that pit-of-the-stomach feeling that he could so easily dismiss the life of a child just because it would have an extra chromosome.

Grandpa has since passed away, but that memory popped into my mind when my own son was diagnosed with DS. How would Grandpa have felt when my son was born? Would he have encouraged me to give him up for adoption? Would he have never accepted my son? Would he have ignored him, or worse been mean to him? I don't dwell on these questions, or the answers, because they are painful. But the truth is, Grandpa was, and is, not alone in the opinion that abortion is a viable option for an unwanted pregnancy, especially one diagnosed with problems.

90% of all women whose pregnancies are diagnosed with DS choose to terminate the pregnancy and end the child's life. That thought sickens me. I cannot imagine my life without my son. I cannot imagine throwing away his life simply because it takes him a little longer to do things.

He has a speech delay. So what? He isn't potty-trained. So what? He laughs, he sings, he plays, he gives hugs and kisses. And when all is said and done he will be the one who's rooting for me to make better choices so that I can be with him forever.

I choose to look at my life with Grandpa as a blessing. It was in his home that I first formed my own testimony and where I learned what I truly wanted to do with my life. I am thankful that though we disagreed on almost everything on a daily basis, it helped me to make life-altering decisions. Grandpa may never have accepted my son, but I know, without any doubt, that my son was meant to come to my family and that he has a great mission ahead of him. Whatever that mission is, it would never happen if I'd listened to Grandpa and aborted him.
   

How Dare She

My kids have been sick so I was holding my youngest son and watching TV. I happened upon a Dr. Phil show. I never watch Dr. Phil but thought I'd give it a try since it was about a bully and I was bullied a lot in elementary school.

The guest was a semi-attractive woman who openly admitted bullying people. At the grocery store, on different occasions, she'd reached into people's carts and pulled out foods she thought they shouldn't eat because they were fat and she told them so. She'd told a woman in a nightclub that no matter how long she looked in the mirror she'd never be attractive and she'd do the club a favor if she went home because her ugliness was detracting from the club.  She was rude to anyone and everyone who she came in contact with.

While the above was appalling, I was floored when she admitted to hating people with disabilities. She said they should all be put in institutions so she wouldn't have to look at them. And the worst was yet to come--she said she had a cousin with Down syndrome that she thought was disgusting. She'd given money to her grandparents so they could take the child and place it in a home so she wouldn't have to deal with this cousin. At one family party she was embarrassed by her cousin's attempt at dancing so she kicked her and knocked her to the ground. She said handicapped people make her sick and she doesn't want to see them anywhere. How dare she say such things and treat people this way.

I couldn't believe this woman and her attitude toward people, especially those with challenges. To think that my son may meet someone like her made me teary. Was this woman for real? Can someone actually be this heartless toward another human being, let alone someone who has a disability? Really?

On the heels of a comment made by a kid in my ward about my own son being retarded, this show made me want to take my sweet little boy and keep him from the world and protect him from such mean people. It has never bothered me that he has Down syndrome, but what bothers me is how people treat him, or may treat him in the future, because of it. It will be my trial to control my mouth when someone is mean to my son because of his chromosome count.

Having him sometimes gives me a small glimpse into what Heavenly Father must have felt when people treated His son with such disrespect and cruelty. The Savior deserved none of the cruel treatment he received. I can only hope that somehow I will be more like Heavenly Father when I see the same thing happen to my son.

The "R" Word

This morning I am trying extra hard to not be offended because I've just experienced what I'm sure will be down the road not only from those who are simply ignorant but also from those who are deliberately being mean.

My daughter told me that she was making a comment about her youngest brother just in passing. A young man in our ward turned to her and said, "You mean the retarded one?"

She replied, "He is not retarded."

He said, "Yes, he is. He's mentally retarded."

This is a kid who doesn't do well in school himself and in social situations is somewhat slow. If we look at the meaning of the word "retarded" it means to be delayed or to be slowed down. In that sense, this young man would certainly qualify for the term. In fact, applied in the academic sense, many children at our elementary school are "retarded" because they do not function on grade level.

However, in most cases this term is used to degrade someone else.

"Retard" is no longer used in the special needs community and has become such a derogatory term that it is offensive to those who are involved with the special needs community. We need to educate those around us. We do not need to perpetuate the idea that people with special needs are not valuable members of society.

I hope we can take the time to educate those around us and let people know that using the word "retard" is offensive and should never be used to degrade another human being. My son may have his challenges but so does everyone. He doesn't deserve to be mistreated simply because he has an extra chromosome.

Sharing Control

The next idea in Play to Talk by James MacDonald and Pam Stoika is to share control with your child.

As adults, we tend to dominate conversations and take control of situations, especially with children. Kids who are late talkers may be intimidated and instead of contributing to a conversation will allow the adult to dominate. In order to encourage late talking kids to participate, we need to allow them to control the conversation or lead the play 50% of the time. Maybe we don't want to talk about SpongeBob or play Barbies but if we allow the child to control what we do or talk about half of  the time he or she will be more likely to participate.

As a mother of ten, I've found that what my kids find interesting and what I find interesting are usually worlds apart. They don't want to talk about plotting, characterization, or story arc and I generally don't like to dissect cartoons, but if I want to reach my son and encourage him to talk, I need to be open to what he wants to talk about, including SpongeBob (which I think makes kids' brains fall out their ears).

Instead of asking questions all the time (something I do regularly to initiate conversations with my older kids) the authors suggest that we limit questions to only 20% of the time and use the rest of the conversation to make comments. They also suggest allowing the child to take the lead 50% of the time so that the child feels in control and feels like an active participant.

I know I'm guilty of being too bossy. It's so much easier to direct everything, but it's not helpful to always tell my kids, especially my son, what to do. I can be a control freak--I like everything under control and I like to know what's happening, when, where, how, etc. I need to work on that.

Here's a suggestion:

Try commenting on what the child is doing without asking questions and be sure to match the language level of the child. Try this 5 times a day for about 5 minutes each.

The point of this book, and what parents of speech-delayed children are hoping, is to encourage verbal communication. My son can communicate almost anything. He picks up signs so easily, but the world we live in doesn't cater to signs and since he's capable of speech I need to do what I can to encourage him to use his verbal skills.

Being Responsive to Our Kids

The next area I want to cover from Play to Talk by James MacDonald and Pam Stoika is being responsive.

While this book is specifically for children who are late talkers, I think this particular area can be applied to all children.

Have you ever been working on your computer, watching TV, or concentrating on a project when one of your kids is trying to tell you something important? Do you just kinda listen? I know I do. I fail to fully concentrate on what my kids are saying because I'm distracted by what I'm doing.

Confession: I need to be a better mom and pay full attention to what my kids are telling me every time they want to tell me something. I absolutely do not want them to stop talking to me because I'm not being as responsive as I should be. If it's important to my kids, it needs to be important to me, even if I'm working on taxes or in the middle of an exciting scene in a book or trying to fix dinner.

Goal: Be more responsive to each of my kids so they know that I value what they tell me.

For kids who are late talkers the authors of this book suggest that in order to be responsive we should:

Respond immediately
Respond to anything safe the child is doing by making comments about it and keep the child interacting
Respond to any actions with a sound
Repeat words the child uses and add other simple ones
Imitate actions
After responding, wait for the child to take his/her turn
Respond as if the child's behavior is an intentional communication

I've been trying to do this with all of my kids, but especially with my son. I keep eye contact and wait for him to communicate to me what he wants. I try to keep a conversation going by responding to what he's interested in.  He's really been using a lot of signs, including "please" and "thank you," but I'm trying to move him into simple sounds to communicate.

I believe that the more responsive we are to our kids, the more likely it is that they'll want to communicate with us. As an aside, I absolutely believe that the foundation of communication we build when our kids are young is the foundation we depend on when they are teens. If our kids know that we want to talk to them and value what they say and we're responsive, they will talk to us when they are going through the tumultuous teen years (and that's when we really want them to talk to us).

Interview

Margaret Turley interviewed me about my son. If you'd like to read it, here is the link: http://margaretturley.com/the-up-side-of-down.htm

Thanks!

Be Matched

Another concept I've learned from Play to Talk by James MacDonald and Pam Stoika is matching my son's communication level.

I tend to use long sentences and big words. I love language (one of the reasons why I'm a writer) and I love to play with words. I tend to speak in complete sentences even to my young children. I do participate in "baby talk" with infants, but that's as far as it goes. I don't favor "baby talk" with toddlers.

I've realized that my son's speech delay means that he needs me to forget my "adult" language and look specifically for ways to match his skills. Instead of saying, "Oh, look at that soccer ball rolling down the field," I need to say "I see a ball."

I need to match him in what he says and in what he wants to talk about. I've learned enough signs to have simple conversations with him and when I do that, it seems to reach him better. He understands more complicated language but he doesn't respond as well to it.

I've now started commenting on things around us in one or two words or signs. Instead of giving him a complicated set of instructions, I give him one or two words so he can respond to me more easily.

The other day, he had a runny nose. Instead of launching into a long, detailed command to get a tissue I simply said, "Bathroom, tissue," and then I acted out blowing my nose. He scampered off and returned shortly with a tissue and blew his nose for me to watch. In that exchange, we were matched.

It's important for me to remember that there's a reason he has a speech delay and that I need to rethink my communication interactions with him as opposed to how I communicated with my other kids.

A recommended exercise from this book is to imitate your child for five minutes. This will help you learn what words/signs he can and does use.

Another suggestion is to be a "living dictionary" and teach the word of what my son is doing so he begins to learn new words. When he does an action, such as kicking the ball, I'll say, "Kick ball." He already knows "ball" and now he knows "kick." I watched him to see what he was already doing and then assigned a word to that action rather than trying to teach him a word first and then the action.

Matching him means to observe what he is already doing and then use words or signs that mean something to him in a way that he can understand them.

 

Play To Talk

My son has been in speech therapy for the last few months. Meeting with his therapist once a week is good, but what he does daily at home will have a much greater impact on his speech. For this reason, I have been reading books to help me help him move toward more verbalization (maybe I should say more recognizable words because he's very verbal, we just don't understand the words yet).

I've discovered an amazing book, Play to Talk, by James MacDonald and Pam Stoika. I urge anyone whose child is struggling with speech to read this book. It's excellent.

In an effort to better understand the concepts in this book myself, I'm going to be sharing them with you. As they say, the teacher learns far more than the student, so if I can explain these concepts in a coherent and cohesive way perhaps they will better cement in my mind and I will be a more beneficial teacher for my son and anyone who reads my posts will, hopefully, learn a few things as well. Of course, my posts will never substitute for reading this book.

One of the first pieces of advice is to teach your child to take turns. Conversations are about taking turns. Kids who do not have a speech and/or language delay learn this concept almost invisibly. It's amazing to me how much I took for granted with my other children. I never stopped to think about how things worked with developing speech, they just spoke. With my son, I am now discovering all of the steps necessary to begin speaking that my other kids just naturally and seamlessly took without my notice.

Some of the suggestions for taking turns:

Wait for the child to respond to what you've said or done
Don't dominate the exchange
Be patient
Give the child a clue that you expect him to respond

As a parent of a child who was expected to be delayed, I'm very anxious for him to speak (I really want to know what's going on in that little mind of his) and I need to remind myself to be patient. Sometimes, taking turns can be a long, drawn out process, but it teaches the child that conversations are about turns and give-and-take.

A technique I've used to help teach my son about taking turn is playing with a ball with him. Rolling, tossing, or throwing a ball back and forth has helped him learn how to take turns. I've also done this with a toy car, bus, or other toy. I've also taken turns with him in building with blocks. I try to look for opportunities to take turns with him, even doing it with sharing an ice cream.

I let him know that it's his turn by saying it, showing him the sign, or simply looking at him and waiting. He responds well to taking turns and he's even translated that to taking turns with toys with other kids--not every time, but most of the time he takes turns.

He also takes turns when he "talks" to me. He'll say something, usually garbled words, and then he waits for me to respond. I think this is a valuable strategy.

I'll continue to share what I'm learning in this book.

He Will Read

I am beside myself with excitement. Last night we put in a DVD for my son to watch. It's from the "My Baby Can Read" reading system. He's watched this one a few times but not very consistently. My husband and I were watching it with him and the word "dog" flashed up on the screen. My son looked at it and then made the sign for dog. No one said the word, there was not a picture of a dog, only the word and he READ it. Yep, he did. A few minutes later, "cat" came up on the TV screen and he made the sign for cat. Again, he READ the word. He had no hints, he had no other clues except for the actual word.

What a huge accomplishment and proof that he can read. Wow! I'm thrilled.

I've taught my kids to read. I don't send them to kindergarten and spend that year with them teaching them through a phonics program. We also learn math and other skills, but reading is our main emphasis. A reader can learn anything because reading opens up the world. My first grader has now read 650 books by herself. We recently had a read-a-thon at the elementary school and in two weeks she read over 800 minutes. Most of my kids go into school reading above grade level. I teach them myself because I never wanted any of them to fall through the cracks and end up not reading.

Since I've taught my other kids to read, I plan to teach my youngest son to read, but I was concerned he might not be able to read. I know that many kids with Down syndrome read, but some don't and I wasn't sure what to expect. I tend to have high expectations for my kids and I just wasn't sure what I could expect with him. Now I know. He will read. He will be able to immerse himself in the world of books and I am so excited for him to do that.

I bought a book about teaching children with Down syndrome to read in hopes that I'd be able to teach my son. And now I know. He will read! Yay!!!!!!

Birthday Boy

Speech Goals

The therapist is very happy with my son's progress, especially in how quickly he's picking up signs. Our goals until we have our next session are: combining up to 5 signs when requesting something, commenting on the world around him using 2-3 signs, and using more than one sign to communicate why he doesn't want to do something. He has no problem telling me, "No," but the therapist wants him to explain why he doesn't want to do something or why he's finished with something. We'll see how it goes.

We'll also be working on the following sounds: boo, bee, bye, bow, moo, me, my, mow.

I'm going to read Play to Talk by James MacDonald and Pam Stoika and see if I can glean some more advice on helping my son to speak. He has no problem at all communicating or interacting with others. He only has issues when it comes to verbal communication. But, that will come.

Now, if only I can figure out how to outsmart him when it comes to electronic gadgets . . . .

4 Signs

At my son's last therapy appointment, his therapist was very pleased with his progress. He's using signs more frequently and he not only used a single sign to communicate to her what he wanted, he combined two signs. He also met other goals such as knowing at least five body parts and making comments about things (like pointing to a ball and making the sign for "ball").

She set new goals for him: combining three signs and using at least two signs to comment on things he sees or hears. This morning, I was so excited when he combined four, yes four, signs. He signed, "want," "cereal," "more," and "prayer" and then he bowed his head. He communicated that he wanted to eat but we needed to say the blessing on the food first. Yay!

His therapist doesn't want him to learn sign language per se, but rather just enough signs to communicate what he needs or wants right now so he can then make the transition into speaking. That's what I want also. It's thrilling to see him progress and use signs more to communicate. He's still pointing when he doesn't know the sign for something, but he uses signs for things he does know. I can't wait until he speaks so I can hear what's on his little mind.

Yay for progress!

Book Review: It Takes Two to Talk

My son has been in speech therapy for the last few months. He sees his therapist once each week. She does some good things with him, but he needs to be involved every day in developing his speech so I've been reading books hoping to learn some techniques to help him.

Since I live in the boonies, I frequently turn to Amazon for my book needs. I looked at several different books including It Takes Two to Talk by Jan Pepper and Elaine Weitzman. When I asked the therapist to recommend a book, she actually gave me this one to read.

It has some good advice. The authors suggest you OWL with your child. Observe. Wait. Listen. Instead of forcing a conversation, observe what you child is interested in. Ask him about it and wait for his response and then listen to that response.

This book suggests first teaching your child to take turns so he understands that conversations are about taking turns. If you let your child take the lead (sometimes hard to do) and are tuned-in to what he wants and/or is interested in then it's easier to have a conversation with him.

The book also has some checklists to see what communication stage your child is at: Discoverer, Communicator, First Word User, Combiner. My son is between the stages First Word User and Combiner. The authors emphasize that a First Word User doesn't necessarily use words but may use signs and a Combiner is one who uses more than one sign to communicate something. Today, my son used signs to ask for an ice cream. He combined the signs for "please" and "ice cream." He also uses the sign for "want" with other signs. He uses the sign for "all done" frequently. He has a signing vocabulary of about 30 words and is learning new ones every day.

I learned some things from this book. It retails for over $50 and I'm not sure I'd pay that. If you can get it at the library or borrow it from a therapist, it's worth reading. 

Haircut Time

It isn't super easy to give him a haircut, but when it gets long enough to do this, it's time. He now has a buzz cut and he gave his new haircut thumbs up too. In fact, it turned out to be haircut night at my house for all the boys. Why is it that boys' hair seems to grow so fast? If my hair grew as fast as theirs, I'd have hair down to the floor.

Progress and Patience

My son is making some great progress. He's now asking for things, usually with a sign, but sometimes verbally. He led me by the hand over to a box of bananas and made the sign for "banana" and then the sign for "more." He's attempting to say more words and sometimes without any prompting at all. I'm pleased with his progress. I wish he'd start speaking in full sentences right now, but, if nothing else, he is teaching me to be patient.

We're still potty-training, sort of. He now calls attention to himself when he uses his diaper and makes a face. He notices when his diaper is dirty and he doesn't like it. And, he usually wakes up in the morning with a dry diaper. So maybe we're heading in the right direction. Again, he's teaching me patience.

Maybe God sent him to me to remind me to slow down, to enjoy each day, and to celebrate the small things that I've always taken for granted with my other kids.