Every baby is a gift, even if the wrapping is a little different.

Thursday, October 16, 2014

Our School Journey, Part 3

We ended up going to mediation without an advocate. I'm not sure I would hire an advocate again based on my own experience. Someone else's mileage may differ. The advocate was knowledgeable and nice, but he didn't get any further with our neighborhood school than we did.

We went to mediation because it was clear our neighborhood school was not going to provide services for our son. Period. I had to ask myself if I was fighting for my son or fighting just for inclusion. When I realized I just wanted what was best for my son and that the neighborhood school didn't want him there, I knew we needed to move him to another school. Why would I want him at a school that didn't want him? It was a high-achieving school with very strict demographics. Not a bad school if your child fits into their specified box.

The alternative elementary school the district proposed was at least a fifteen minute drive from our house, without traffic. It would've been physically impossible to pick up my son and pick up my other kids from their schools. We took a request for a different, closer, elementary school to mediation. We also insisted on more inclusion than initially offered.

We also requested that our daughter be given the opportunity to transfer with her brother if she desired, but be allowed to return to the middle school she is zoned for, so she could reconnect with friends.

The mediator was a very kind woman who was so calm. She took all the previous contention we'd felt and washed it away. She was excellent and at the end of a very long day, we received what we had requested.

We removed our son from our neighborhood school. The kids in his class were quite upset. Some of the girls cried in class. One boy went home and cried to his mom about my son leaving. (They later had a play date initiated by this boy to see each other again). My daughter decided it was much more important to her to be in the same school with her brother than to be with her friends. She felt like she needed to be with him to watch over him. We transferred them both to the new school in February.

Stay tuned for our experience in the new school.

Wednesday, October 15, 2014

Every Baby Deserves to Live

I recently watched a video about a couple who shared their very personal journey about having a child with Trisomy 13. It was so touching. They received the diagnosis that their son had a rare chromosomal abnormality after they had an ultrasound. Of course, they were given the option to terminate the pregnancy.

With such a dire diagnosis, and the reality that their son would die soon after birth, a choice to terminate would seem the rational thing to do, but that is not what they chose. I loved the line at the end. This was their son. They chose to give him a few days of life because he deserved to feel their love and to know they wanted him.

We live in such a disposable society. 90% of all pregnancies diagnosed with Down syndrome are terminated. Whether that is due to fear, ignorance, or selfishness, the outcome is the same. And so is the message: A child that is imperfect is disposable.

Everyone wants that "perfect" baby. And yet, there are no guarantees that the "perfect" baby won't have autism, or learning disabilities, or suffer an accident or illness that incapacitates the child. Or worse, how many "perfect" babies are now in prison as a result of heinous acts? There are no guarantees.

Every baby deserves to live and deserves to be loved.

Tuesday, October 14, 2014

Ten Things About My Son

1. He loves to laugh and to make others laugh. This kid was born to perform.

2. He is an electronics whiz. He can figure out computers, phones, iPads, iPods, cameras. I always tell people to keep their electronics out of his grasp. He's been known to hijack my phone and text his siblings with his name.

3. He loves to take photos and videos of himself. He'll watch said videos on the iPad for hours. He prefers to watch his selfie videos over movies and cartoons.

4. He comforts others. If he seems that someone is sad, he will put his arm around that person. He is very compassionate.

5. He has taught himself to swim, and he loves to go swimming. He'll run upstairs to his room and put on his swimsuit almost every day.

6. He loves to sing. His favorite songs are, "Happy Birthday," "Head, Shoulders, Knees and Toes," and "Nephi's Courage."

7. He can read. He uses his decoding skills to sound out unfamiliar words on signs, menus, books, newspapers. He likes to show others that he can read.

8. His favorite computer game is Batman 2. He'll even eat his vegetables if it means he can play Batman 2.

9. He is grossed out by his older brother's armpit hair. He thinks it's disgusting when we're in the pool and his brother lifts up his arm. Little does he know, someday he'll have his own armpit hair.

10. He can count to 20 and can do simple addition. He loves to play math games on www.abcya.com.

Friday, October 10, 2014

He Plays Baseball

When I first had my son, I was afraid he wouldn't participate in life. I thought he'd just exist and that was pretty much it. I've since learned how wrong I was.

He does so many "typical" kid things, including playing baseball.  He plays on a special team that was created, and is supported, by a local baseball association. He has a game every week and the season runs the same as the regular one. He first played on this team last spring and he is playing again this fall.

He loves it. He gets so excited when he hits the ball and runs to the bases (and now we're happy that he runs in the right direction). When he hits home plate, he bows and throws kisses to the crowd.

Yeah, it isn't a regular team and the rules are different, but he has a uniform, he catches hits by players on the other team, he hits the ball, he runs the bases, and he's learned the rules. In my book, that's baseball.

Each week a team from one of the high schools volunteers to help the players on this team. When it's a boys baseball team, my son is all business. When it's a girls softball team, he becomes Don Juan and spends most of the game flirting with the teenage girls.

All in all, it's a great experience and we're having fun.

Thursday, October 9, 2014

A Child, First and Foremost

My son attends an elementary school with 900+ students. That is six times larger than the elementary school my other kids attended. There are lots and lots of kids at this school.

Each morning we get in line to drop the kids off. I'm not a big fan of this process--we spend so much time waiting in line each day to drop of and pick up kids from school. We drop our daughter off right in front of the entrance then drive down to take our son to the gym where the kids in his grade meet each morning.

Today, a blond-haired boy walked with us. He knew my son by name and said hi to him. He told me all about himself on the way to the gym. When my son walked into the gym, he was met with kids waving at him and calling out his name. Everyone knows his name and kids talk to him and pat him on the back all the time. He's kind of the resident rock star.

Of course, they know his speech is not as developed as theirs, so he struggles to verbally communicate, but they don't seem to care. They seem to like him despite his challenges. One boy in particular is always by him, always helping him if he needs it, and always has a big smile on his face when he sees my son. This boy has taken my son under his wing and he is so, so sweet.

At this age, the kids are so accepting. They see my son as part of their class and part of their school experience.

Back in the day, kids like my son were separated from the general population. They didn't interact with typical kids. Fortunately, we've learned that in order to break down barriers and foster understanding we need to include kids with special needs in everyday situations, including school.

Numerous studies indicate that where a child with special needs is included, it not only benefits that child with special needs, but also benefits the other children and teaches those children things they cannot learn any other way. The kids that interact with my son are learning so much from him and he is learning so much from them. I am grateful he has the chance to interact with all of these kids.

And I am grateful for the kids who go the extra mile. The kids who play with him. The kids that invite him to play dates. The kids that just see him as another kid, because that's what he is.

A child with Down syndrome is still a child who wants to be loved, to have friends, and to enjoy life. A child with Down syndrome has gifts, talents, fears, strengths, weaknesses, dreams. A child with Down syndrome may look a little different or do some things differently, but he or she is a child first and foremost.

Wednesday, October 8, 2014

Our School Journey, Part 2

We had thought we would enroll our son in our local school in Colorado where we had lived for the last 19 years. Things changed, and we moved from Colorado to Texas right before he was set to start first grade.

The law in Texas requires parents to enroll their children in the school that geographically serves the area where they live. We enrolled him in the elementary school that serves our subdivision. We had hoped for a positive experience for all of us.

From the beginning, though, we knew this was not going to be an awesome experience because this school was not equipped to offer him any services, including an aide. We'd been told they would never give him an aide/ Because the school district is so large (50,000 students) they do not offer services at every elementary, but rather have designated schools with services. Our local elementary was not a designated school for the services he needed.

We had meetings and asked for modifications and accommodations, but we were met with resistance. A lot of resistance. They did not want to keep him in that school. At all. He had to go through testing in order to qualify for services that we all knew he needed, with the end result being that he would have to attend another school. We wanted him to stay in our neighborhood school where his older sister attended as well as neighborhood kids and children from church, and give him the help he needed to be successful.. We believed that was the intent of the law regarding students with special needs, especially because that is exactly what it said (children with special needs should not be moved from their neighborhood school just because they need accommodations or modifications to the curriculum) What it said and how this district interpreted what it said, we found out, were two completely different things.

We went round and round. At one meeting it got quite heated. We quoted the law, we pointed out successful inclusion stories, we shared our own experiences with him and his ability to learn, and we showed them graphs and comparison charts collected by reputable researchers in inclusion studies. It did not matter. The bottom line was they were not going to provide any services for him at that school. they were not happy that we kept asking for meetings and one of the district staff members did not treat us very well.

(As a side note, when I was at the neighborhood school, the kids had to stay in lines, could not speak in the halls, had to always face forward in their lines, had to walk down the halls with their hands behind their backs, It felt much more like a military school with all of its rigid requirements. It was not a warm, welcoming atmosphere at all).

We hired an advocate to help us.  We attended a Wrightslaw Conference. We read and studied. Yet, every thing we brought up in the meetings was met with, "We're sorry, but we are not required to provide that for your son. You will have to move him to another school." That meant disrupting my daughter's education and her social network that she had established.  

Stay tuned for the next installment in our journey.

Tuesday, October 7, 2014

He Loves to Swim

A few months ago, this kid was not swimming at all. He barely tolerated the water. By the end of the summer, he was jumping in, holding his breath, going under water, doing somersaults, and swimming across the jacuzzi part of the pool. He loves it. He learned all of this from being in the pool so much with us this summer.

He loves swimming so much that sometimes he won't get out of the pool. One night the other kids were done swimming and had gone inside the house.  I was outside next to the pool watching him, but I was in my clothes. I asked him to get out. He told me he didn't want to. And he meant it.  As soon as I got close to one side of the jacuzzi, he swam to the other side. He knew I couldn't reach him without getting into the jacuzzi and since I was dressed, I wasn't going to come in and get him. He thought it was such a fun game. I did not. Finally, I had his older brother get back into his swimsuit and go into the jacuzzi to retrieve Jared.

I was not a happy mom. Jared didn't get to go swimming the next day as a consequence. He hasn't refused to get out of the pool since then.

I am thrilled that he is swimming and that he loves it. He isn't quite ready to brave the main pool. I am hoping that will come as he feels more confident and spends more time in the water.

We're even thinking about putting him on a swim team next spring.

Monday, October 6, 2014

Our School Journey, Part 1

I homeschooled my son for kindergarten and first grade and planned to put him in first grade (holding him back a year) when we enrolled him in our local public school in Colorado.

We decided that I should homeschool him so that I could give him a solid foundation in phonics and reading. I worked with him every day. I had homeschooled most of my other kids for kindergarten and taught them to read based on a well-researched phonics program that our elementary school used. Some of my kids went into first grade reading several years above their grade level. I wanted to make sure I sent them into school reading so none of them would fall through the cracks, because if you can read, you can do anything.

I wanted my son to read like his siblings. I worked on teaching him phonics but it didn't seem to make sense to him. With my other kids, we learned phonics then moved onto sight words using phonics to decode words. My son was different. I had to change what I'd done with my other kids. Instead of learning phonics first, the reverse was true. He needed to learn sight words first.

We worked on sight words. I bought sight word based reading programs. I made flash cards out of index cards. I labeled every day items like fork, spoon, plate, stove, bathroom, etc. I made flashcards for family member's names (remember, I have 10 kids, so learning all the names was no small feat for him). We did flashcards for animal names, colors, numbers, nouns. We read lots of books.

After a while, he started to pick up on phonics, so I switched gears and we worked on the sounds that each letter makes. Some of the letters, like f and v, were harder for him to say, but it didn't take him too long to learn all the letters. He began decoding unfamiliar words. He began reading signs on the road as we drove to town. He read titles of books and he started actually reading sentences inside the books.

We also worked on the computer. He did Raz Kids (subscription), Looney Tunes Phonics (subscription), and Starfall (free). He also worked with www.abcya.com (free), which has all sorts of programs for all grade levels.

I did all of this in hopes of preparing him to enter public school.

Friday, October 3, 2014

Not a Blob

Sometimes he is mischievous.

When he was born, I thought he'd be a blob. I didn't  think he'd interact with me, his family, or anyone around him. I envisioned him just watching the world pass him by. I didn't think he'd experience much.

Wrong. Wrong. Wrong.

Not only is he completely interactive with the world around him, he can get into mischief.

(Even though his current verbal skills prevent him from verbally communicating like kids his age, he absolutely communicates in other ways and interacts with people).

This is the face he makes when he's up to no good. He knows when he is doing something he shouldn't. Like my other kids, he tries to be cute to get out of being in trouble. He also tries to be cute and adorable when he's supposed to go to bed. Unfortunately, sometimes he wins.

The point is that he knows. He isn't just a blob letting life happen to him. He make decisions and choices. He isn't simply acted upon.

My son loves to play a computer game called Batman 2. It's a Lego version and he loves, loves, loves it. We told him that in order for him to play this game, he must receive all "smiley faces" at school for his behavior, work, and participation. Each day when we pick him up, the first thing he does is pull his folder out of his backpack and show us that he has happy faces. Then he says, "Batman 2."

He is capable of making choices and learning how to behave. He continues to learn the difference between right and wrong. He is beginning to understand the consequences to his choices. He knows that if he gets happy faces he can play his game. He has also learned that he can only play his game after he does his homework. No homework, no game. Since he loves this game, it's quite the motivator.

He is not a blob.

Thursday, October 2, 2014

My Son is Just a Kid

We attend church on Sundays. Last week my son's teacher asked me to send her a list of talents he has because the class would be talking about talents.

After church, one of the boys in his class came up to me and said, "Jared has a lot of talents." Then he flashed me a big, toothy grin.

His teacher approached me and talked about how the class had gone. She said that she loved the things I'd sent in about Jared, and it made all the kids in the class realize that he is like them. She said it opened their eyes and gave them a new view of him because he doesn't participate much since his speech skills limit his ability to verbally interact with the other kids.

I think they all realized what I did so many years ago.

He's just a kid.

Yes, he has challenges. It takes him longer to do things.  He met his milestones later than his siblings. His speech is very limited.

Still, he's just a kid.

He loves to play Batman 2 on the computer. He plays with his Buzz Lightyear and Woody toys. He loves to swim and jump on the trampoline. He plays on a baseball team. He sings, forgets to flush the toilet, and tries to avoid bedtime. He asks why he has to do homework. He loves to sit on my lap while I read him a book. He doesn't like to eat his vegetables. And like the boy that he is, when he passes gas, he makes sure everyone knows and then he laughs about it. Because body noises are just so funny to boys.

He's just a kid who happens to have Down syndrome.

Wednesday, October 1, 2014

October is Down Syndrome Awareness Month

Down syndrome is the most common chromosomal abnormality. It occurs 1 in every 800 live births and more than 350,000 Americans have Down syndrome. It seems that we wouldn't need a month to raise awareness.

But we do.

I still find that people don't know much about DS and many are still uncomfortable and afraid of interacting with people with DS. Many ask me questions, which I truly appreciate. I'd rather have someone ask me a question than have them continue to believe a myth.

I think the biggest myth I've encountered is that people with DS are always happy. People say things like, "Oh, your son is just happy. He must be happy all the time."

Um, nope. Not happy all the time. Downright unhappy sometimes.

My son goes through all the same emotions as my other kids. Yes, he is generally happy, but so are my other kids. He can become frustrated, upset, sad, angry, impatient, silly, or any of the other multitude of emotions we all face.

People with Down syndrome have feelings. Lots of feelings. They express them well sometimes. Other times they do not. Just like the rest of us.

So let's dispense with the stereotype that people with DS are happy all the time and realize they experience the same myriad of feelings we all do.