Zach's teacher...

In October I mentioned to Zach's teacher that I was doing the 31 for 21 and if she so felt inclined, to write a little blurb about Zach. She emailed it to me today and it filled my heart with joy to read it.

Teachers, especially special ed teachers, are truly unsung heroes. Zach's aides and teachers mean so much to our family and I am so thankful for them.

Zach Hiatt embodies exuberance as well as heart.  Zach is in my class at school, and I am lucky enough to be Zach’s teacher. Zach’s smile just lights up our room.  Every morning, he’s got the greatest hello for everyone.  When he shares something during group time, his story is punctuated with gestures and demonstrations like when he says, “I’m Buzz Light Year, to infinity and beyond!” with a swish of his cape and a leap.

Not only is Zach exuberant, he’s got a great heart. One day, I was having some medical issues so I took the morning off of school to see a specialist.  When I returned, the sub teacher was finishing reading a book to the students.  I quietly sat down on the floor next to Zach.  Zach beamed and leaned into me and said, “Rhonda, we missed you.”  My heart melted.  It felt good to be missed.  Then Zach said, “Where were you?” and I said at the Dr.’s office.  Zach then said, “Are you, O.K., Rhonda?”  When I told him I was O.K., Zach said, “Did the Dr. give you a lollipop?” That cracked me up.  It felt good to laugh.

I feel so privileged to be Zach’s teacher, and I often wonder, “Who’s teaching who?” because I learn so much from Zach’s love of life and his tender, good heart. I love watching him grow up and learn new things—every day it’s something new with Zach!  The latest thing is “I got it, Rhonda.”  Thank you, Zach, for all you bring to all of our lives!

Teacher Rhonda

Thank you Teacher Rhonda. For everything that you do.

Bullying

Never have I had such a fire in me to write about something that is on my mind yet my words do not seem to do my feelings justice. Please bear with me, I hope at the end of this to have a point, if not... enjoy the ride.

This morning I was trying to decide what to blog about. I haven't quite met my blog-a-day for the 31 for 21 and I really wanted to post something today. I came across a post with this link. I thoroughly enjoyed reading this article for many reasons. For one, we live in a small town and I have always had this dream in my head that if we stay in this town that Zach will be known, accepted and loved in our community. Two, the peer advocates is an awesome program that I just might be writing a letter to our school district about. 

Back to my first point. At Zach's latest IEP one of the biggest points I stressed, and that mattered most to me, was inclusion. Zach is in a special ed class at his school and having integration with the "regular" 1st grade class is something that is at the top of my priority list. I know a lot of parents who have kids with IEPs read this and might feel I am short changing him when it comes to the academic goals but of course that is not the case. I have such faith in Zach's IEP team that I knew that would not be something I needed to be worried about. They've got his back. When Zach meets goals before the dates we have set, they are the first ones to set new goals. Anyway, back to my point.... inclusion... last year it did not happen nearly as much as we'd hoped. A big reason for that is budget cuts and the Kindergarten teachers having close to 30 kids per teacher. I get that, but it doesn't mean I still wont push for more time for my kid. Not only do I think Zach learns a lot from other kids his age... I truly feel that Zach's social skills are going to get him further in life than any other skills he will learn. When Zach is older, I feel that him being able to be active in the community and having a lot of friends will take him very far. Being able to go out to dinner and display manners and be socially comfortable will help him live a fulfilled life. 

Now to talk about my second point. Peer advocates. This is something that should be happening at each and every school in America. From junior high through college. In my naive brain, I cant imagine it would take much, if any, funds to operate. Kids volunteer their time and they have meetings on lunch hours or as an elective class and a couple teachers or parents in the community give their time. Today has been called a day to prevent bullying. Millions of people (I included) wore purple today to support the teens who have recently taken their lives because of bullying. They were bullied because of their sexual preference. Because being a teenager isn't hard enough, now throw into that coming to grips with feelings that are perceived by some as wrong or bad. Now on top of that you are bullied. And not just playground teasing or snickers in the halls when you walk past the cool crowd going to your locker. No, times have changed. Now, even the ones who didn't have the nerve to make fun of you to your face have the anonymity of the Internet. They can cowardly sit behind a faceless computer screen and poke fun at every single thing that you feel self conscious about. And they can post it for your entire school and community to see or read.

I am in no way perfect. I am sure I was mean to someone from time to time. I was bullied for being the fat kid so I in turn bullied someone else to take the attention away from me and to try and make myself feel better. I like to think I was above that but I'm not. It is a vicious cycle. I do know that I was not a truly mean hearted person and I had a conscious so any teasing I dealt out was pretty tame.

Today I read something on Facebook that has bothered me all day and is the epitome of irony. Someone I love posted a reminder last night to wear purple to help raise awareness of bullying and in honor of those who committed suicide. Such a smart young girl to stand up for what she believes in. Right? She got several comments of support and then I read comments from her own flesh and blood, someone who should do nothing but love and support her, about how she got details wrong. Not only was her grammar picked apart, but her interpretation of the message. You could tell by the exchange of words that this is not an isolated incident. It pains me that so many people are disrespected by those who should be their biggest advocates. It is no surprise that people become depressed. I just hope the kind words that were said were taken to heart and she truly knows how much she is loved. And I hope that every other teenager whose family members put them down have someone to turn to for a positive influence.

If every student that recently committed suicide had an advocate in their school to stand up for them, or even just a supportive ear, maybe their family would not be grieving the way they are tonight. Suicide has got to be the hardest form of death to process. I know. My dad committed suicide 6 years ago and it is something I think about every day. It is something that I don't know you can ever fully have closure for. There are always the "what if" questions and the "could I have done something differently"  thoughts. I can only imagine how the parents of these young kids feel. It is senseless. It is unacceptable. 

Be the change that you want to see in the world. 

Unless you are a mean person, then just lock yourself in your house until you have a positive epiphany and please, please... don't pro create.

As heard....

This morning Zach was in his room picking out his clothes for school. He had been in there for a couple minutes so I went to make sure he wasnt pulling all the clothes out of his drawers. He was standing in front of his closet holding 2 shirts. One had a flying baseball on it and one had a stick figure playing drums with the saying "I Rock". He said "Mom... I need help choosing my shirt". I said "well, do you feel like a baseball player today, or a rock star?"... He smiled and said "baseball player"and put the other shirt away.

Love that kid!

Spreading the word... guest blog

I was approached by a friend to do a guest post on her blog in honor of Down Syndrome Awareness Month. She is an amazing writer and I love reading and following her blog Mandyland.

I am completely touched that she wanted to do this. Her and I are both members of our local moms group and while I feel like I "know" her well virtually, we had only met a small number of times. I feel honored and proud that by reading my posts during 31 for 21 she wanted to spread the word about DS as well. I feel like my mission to spread the word is being fulfilled!

Please click here to read our joint post.

I knew it would be ok....

My cousin Danielle is 9 days older than me. Growing up we had shared family birthday parties, "Jeni/Dani nights" and we always got the same birthday and Christmas gifts. We would try to open our gifts at the same time so that we could both be surprised by more than just what color it was. When we were teenagers we went down two very different paths and while we probably wouldn't have hung out in the same crowds if we went to school together, it didn't much matter. If I had to pick any person that I would like to be more like... it would be her. I will never forget when we were all getting ready for her wedding. All of us bridesmaids were stressing about our hair and makeup and getting jitters before the ceremony started. She was the one to calm us all down and to be the soothing presence in the room. I love her dearly.



After Zach was born and we were told he might have Down syndrome, I thought about my cousin Dani and I knew it would be ok.

15 months earlier Dani gave birth to her beautiful baby boy Gabriel Tomas. Gabe came into the world 16 weeks early. He spent as many weeks in the NICU fighting for his life. Nurses and doctors urged Dani to "let him go". As if that was possible. I cant speak for her but I am sure Dani knew that he was meant to live and that this was her child and that was all that mattered to her.

Family and friends surrounded them with love and prayer and eventually they were able to take their sweet baby boy home. Sure he has health problems and has endured hospital stays and surgeries but the number of lives this little boy has touched is immeasurable. I am so thankful that she did not "let him go" because when I was faced with the challenge of accepting Zachary into my life I feel like I channeled her strength and I just knew that it would be ok. I knew that Zach would be accepted and that there would never be a shortage of love for my boy.

I feel like her and I have an even deeper bond than we ever did before. That we get it. We know that we can bounce questions off each other about IEPs or how to possibly make coffee wake us up faster and everything in between. I know I can call her at 6am to ask about seizures and she knows she can send me text messages with pictures of her kids butt to ask if a spot looks like a staph infection. I wish there wasn't 300 miles between us and that we could spend more time together and our kids could create the memories that we have of family dinners and gathering at the grandparents house.

Dani and I have had the unofficial conversation (we really need to get that in writing) that if anything were to happen to Chris and I that her and her amazing husband Omar would raise our kids. I cannot imagine anyone else, with such genuine hearts, that would love and raise our kids the way we would want.

Dani & Omar with Zachary


The boys.... this was possibly their first meeting...


The boys were not happy to be laid down together... this was the best we could do...






I love you Nani Bit Bit!!

31 for 21 ... Single Dad Laughing

The other day I posted a link to a story on Facebook from Single Dad Laughing. I posted this entry that I had read with tears in my eyes. It is inspiring and a great reminder to anyone who spends time with children.

Today I am linking to him again for his beautiful, heartfelt words for his sister, who had Down syndrome. The way he talks about her is so touching and real.

Please take the time to click here and read it for yourself. I don't think you'll be disappointed.

Guest Blogging

I had my first opportunity to be a guest blogger today. I wrote a piece for Babes in Disneyland, a blog I follow written by a mom who is a former tour guide of Disneyland and still a So Cal local who now takes her kiddos there often.

The post was about traveling to Disneyland with a child with special needs. You can read the post here.I hope parents are able to take at least one helpful tip away that could help with future traveling. Anywhere.

I shared the link on Facebook and a friend commented "great tips for EVERYONE!". This comment just goes to show that Zach, and others like him, are more alike than different. I am sure there are lots of other tips and tricks I could have listed on the post but these were ones that came to mind that specifically worked on our trips and it is very true that these tips could apply to many kids. Of all abilities.

DS and my daughter

Before we even conceived our daughter I knew that she would be amazing. I knew that extra chromosome that her brother carries would affect her in such a positive way. While Hannah is only 3 and in the throws of being a strong willed drama queen I can already tell she is going to be a more compassionate, understanding young woman than I ever was. What some would call different is normal for her and that is something I wish all children were exposed to. I believe it would make for a much more understanding society. Maybe there would be less bullying in school and more acceptance. I watch Hannah at Zach's soccer games and I love that kids in wheelchairs, using walkers and walking with crutches don't phase her one bit. She doesn't even notice it. I also love that she understands Zach's speech better than we do. There are times I am not understanding what he is telling me and I ask him to repeat it and finally Hannah will turn to me and say "he said........". That warms my heart. I have no doubt that they will continue to be great friends and that she will likely be his biggest advocate.

Picture Day

Today is picture day at school for Zach. He insisted that he have "spiky hair". I didn't want to do it because that is really not him. We generally never spike his hair and I want him picture to look like... well him. Since last year he hated the whole process of pictures and ended up having teary eyes in his pictures, I decided to go along with it in hopes that he was happier with the picture process.

Alarming statistics

Down syndrome occurs in 1 in 733 LIVE births.

Approximately 90% of women who find out prenatally that their child has this extra chromosome terminates the pregnancy.

90%! That is crazy. Sometimes I feel like I am raising an endangered kind. For lack of a way better term. I feel that with the earlier prenatal screenings this percentage is going to continue to climb. I fear that the acceptance of individuals like my son will not get better over the years but in fact get worse, since there will be less and less people like him born. 

90%! So many lives are ended because they are deemed unworthy. Because doctors suggest 'taking care of the problem' rather than educating and because scared parents are worried about what society will think of something less than "perfect". 


I cannot begin to count the number of people that Zach has touched. People that have personally told me how much they love my son. People I don't know come up to us at the grocery store or when we are around town and tell us they have worked with Zach at school, or that their kid rides with Zach on the bus and Zach has made such a positive impact on their life that they feel compelled to come up to Chris and I and tell us about it.

They tell us just how much they love him. 

How sweet he is. 

How their typically rambunctious child is calmed by Zach. 

How Zach comforted their kid at school when their kid got hurt.

The list goes on. 

This does not sound like a soul that should not be here with us. This is not a life that is a burden on society. This child has taught things to more people than we will ever know. Sure they might not be things that you can record on a report card. Or that will help you ace a test. But what is more important is that he has taught people what true uncensored love is. And not to judge a book by the cover that society has created. 

I feel sorry for all of the people that don't have a Zachary in their life because the way he has enriched mine is unexplainable and is something I am so thankful for.

The R Word

Anyone that knows me knows how much I hate this word and how much it hurts me to hear it. If you don't know why it is terrible and/or want to read a few things about why I hate it so much I have blogged about it a few times here, here and one of my favorites here.

There has been some media lately on this subject and recently a bill was passed to eliminate the term "retarded". (You can read about it here). I have mixed feelings (mostly good) about this that I plan to talk about in a later post.

This change is great news because I hate seeing the term "mentally retarded" all over Zach's education plans. See... Zach does not qualify for services because he has Down syndrome. Zach qualifies because he is considered mentally retarded. (now you see why I hate the word being used as slang?). Technically, someone is classified as "mentally retarded" based off of their IQ score yet Zach has never had an IQ test (could they even do an IQ test on a 6 year old? Any 6 year old?). So the fact that he is assumed "retarded" based off of his extra chromosome really sucks!


Here is where you can help. Don't use the word. Correct your peers when they use it. Don't let your children/nieces/nephews/siblings/cousins use it. I hope that in my lifetime the R word will be as unacceptable as the N word.


Here is one last article by John C McGinley (who has a son with Down syndrome) that is fantastic.

So there. Go. Read... and don't say I never taught you anything!

I leave you with one last video clip. 

Spread the word to end the word!

People First Language

Click here to read a more in depth article about People First Language.

This is something that I feel strongly about and really strikes a nerve with me. I have corrected people and had them roll their eyes at me. Like it is all about being PC and that it really doesn't matter how they word it. But it DOES matter.

My son is not a "Downs child". He is a person. He is my son. He is not defined by a medical term that his genetic make up is labeled as. Yes he happens to carry an extra chromosome. Yes he has Down syndrome. But he is not "a Down syndrome". Down syndrome does not define who he is.

What if you had cancer? Would you be accepting of somebody calling you cancer woman? Or crippled man? I would hope not because that does not define you.

I hope you take the time to read through the document I linked to above and educate yourself. Individuals with disabilities want, and deserve, to be seen as people first and respected as valued members of society.

Buddy Walk

This past June we took part in the 1st Annual Buddy Walk with the Down Syndrome Association of Santa Barbara County.

It was a beautiful day and the location could not have been more picturesque. We are humbled by our generous family and friends that made donations in our names to support our team, Zachtastic.

Zach refused to wear his Buddy Walk shirt but the Superman one he had on was fitting.

Being that it was the first year it was a fairly small group but we look forward to being part of this great group as it grows over the years. 


I didn't take too many pictures (surprising, I know).. but here are a few I did get.




So excited when he got it!



Waiting to do his Home Depot craft



Games!









Hangin' with Smokey


Ice Cream Face!



"Aww mom... don't take my picture!"


(see those palm trees in the background? The ocean is just beyond that. I love where we live!)





The Walk Begins!! 


"Don't worry Dad... I got this!"


Helping Nana pull Hannah in the wagon

Welcome to Holland

Welcome to Holland by Emily Perl Kingsley

©1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…


When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice Holland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

As heard...

The other night I was tucking Zach in bed for the night. For the record, it had been 113 that day so it was pretty warm in our house. This is how the conversation went...

Zach: Mama... lay with me

Me: No Zach, it is way too hot

Zach: No mama. It is not hot. The sun went down. I show you. (gesturing towards the window)

Love this kid!

Did you know prenatally?

I get this question from time to time. So, for those of you who have wanted to ask and never did... here goes...

No. We did not know prenatally. I am glad we did not know. Before we had the prenatal testing we discussed what we would do if the tests determined there was a problem. We both agreed we would do nothing and we would continue with the pregnancy and love the baby regardless. I am sure that is what most people say before they go in for prenatal testing. Before they are faced with facts and statistics. Before they are asked by presumptions doctors "when should we schedule the termination?". Before they are painted worst case scenario pictures as the norm. The truth is... I don't know if we would have continued the pregnancy. I like to think that I had enough love and maturity in me but I honestly don't know.

I am sure this is not the "popular" thing for anyone to say but this is my blog with my thoughts, if you don't like it, you are free to click that little x in the upper right corner of your browser

I was a totally different person before I had Zachary.

Chris and I were a totally different couple. That extra chromosome changed me to my core. I don't know if the person I was before would have accepted this. Before I had this little pink person staring up at me. This person that needed nothing but love from me. This person that had shared my body for 40 weeks and I had grown to love so deeply. At 18 weeks when I had that screening done, I hadn't yet felt his first little flutter. I didn't know that he was a he. I didn't know what his name would be. I had no idea what it would feel like to stare at your child and feel that overwhelming love the moment they come out of your body.

I was busy making wedding plans and adjusting to quitting smoking and drinking wine and coffee. While Chris and I were very much in love and planning to get married, I got pregnant quicker than we expected so we pushed the wedding up a little bit. I don't know that we would have felt secure enough in our relationship, or in ourselves in general, to accept something like this. I am ashamed to say that I was that annoying teenager that made jokes about the short bus. That didn't know people with disabilities. Like really know who they are. Sure I may have been cordial in passing but I didn't take the time to really know who they were. At my school the special ed class was grossly removed from the rest of the students and I rarely saw any of them let alone know their names.

I don't know if that person would have accepted this.


In looking back on our AFP test results I think there should have been some red flags raised. My OB during my pregnancy was in a group of 6 doctors. I saw a few of them throughout my pregnancy due to my doctor being out often dealing with some family emergencies. At the routine appointment following the screening I was told that the results were "normal" and it was never discussed again. At our "big" ultrasound I was around 20 weeks into my pregnancy and all of his limbs measured slightly short - around 18 weeks. I have learned with pregnancy there is about a 2 week 'give-or-take' cushion so his limbs measuring 2 weeks behind was not cause for alarm. At my postpartum follow up I met with the doctor who delivered Zach. The one who after Zach was born said there was no way he had Down syndrome. I told him that the tests confirmed that he did in fact sport the extra chromosome and he pulled out my AFP results and said they were around 1 in 350. How that wasn't an elevated result is beyond me? Based off my age (25 at the time of the test, 26 when he was born) "normal" should be around 1 in 800.

Begin rant
Personally, I think the AFP screening is a huge waste of blood (and I told my OB that when I was pregnant with Hannah). I strongly urge everyone I know to not waste their time on that test. I have heard of so many people getting elevated risk factors, stressing out for nothing, all for their baby to have the correct number of chromosomes. I have never heard anything good come of this screening.
End rant

Anyhow, my theory is that with everything going on with my doctor, something slipped through the cracks with my results. Or maybe some higher being knew how much I needed Zach and knew that our plan was to not know until birth.

Down Syndrome Awareness Month!!

In honor of Down syndrome Awareness Month I am going to try and blog everyday. Blog about DS. Zach. How it has effected our lives. I may have a guest blogger or two. I may post about short little conversations between Zach and I. I may just post a picture. But my goal is to share as much as possible with people about Down syndrome and the joy it has brought my family. And maybe learn something I didn't know along the way...

Stay tuned...