She Said What?

On Monday I finally relented and went to the doctor since I was pretty sure I had a sinus infection. After chasing Hailey around the reception area for a few minutes the nurse called us back to the exam rooms. She looked at me and asked me if my son was "in the program" at Burr Elementary. I kind of looked at her, realizing that she did look familiar. So the conversation continued like this:

ME: Yes, Andrew is in the preschool program.
NURSE: Oh, he is in Ms. D's class?
ME: Yes.
NURSE: My daughter is in the other preschool class. Is he going to be in kindergarten next year because I heard that each child can only do the program for one year.
ME: Well, my son has a diagnosis and he just turned 3 in December, so he will automatically returning next year.
NURSE: Oh, I didn't know that.
ME: My son has Down syndrome, so he attends 2 mornings a week until he goes on to kindergarten.
NURSE: Oh, I'm so sorry.
ME: I'm not. He's a great kid.

The exchange goes on for a few more seconds until she leaves the room with my chart. But the rest isn't important to my issue.

Until Monday, I don't think that anyone has really said, "I'm sorry" when I announced that Andrew has Down syndrome. I don't usually bring it up in a social conversation with someone I don't really know, but I did since our kids attend the same school. I was also caught completely off-guard. Here I was, talking to a relatively young NURSE, with a child who is a typical peer in the special education preschool program. I NEVER thought that I would hear those words coming out of her mouth. After she left the room, I kept thinking, that's all I said to her? Should I have taken the time to educate her about children with special needs?

What do you think? What do you do (if anything) in those situations? And, if you had 15 seconds to educate someone about how great our kids are, what would you say?

Kim :)

In Honor of Andrew on World Down Syndrome Day

My life would be very different if Andrew wasn't born with Down Syndrome. That day, December 12, 2006, changed my life forever. I have made connections with people whom I never would have met if it wasn't for the extra chromosome that Andrew was blessed to have. Three copies of his 21st chromosome...funny how something as small as that could change your life. My goals, now that he and his sister are a bit older and more independent, are to increase awareness and garner more acceptance for people with Down syndrome. It is not an illness and it is not contagious. People with Down syndrome deserve the same acceptance and respect that everyone else deserves. Leave me a comment if your life has been touched with someone with Down syndrome.

So, here is my 21 for 21...21 things about Andrew that makes him who he is...

1. Andrew has Down syndrome, which was diagnosed after he was born. It occurs in approximately one in every 800 live births.

2. If he knows you well, Andrew will always have a big smile and a hug for you.

3. If he doesn't know you well, Andrew will put his head down when we sees you, but will peek out to look at you to get to know you better.

4. Andrew loves to play outside. Whether it's running up and down the driveway or kicking a ball, he'd rather be out in the fresh air than inside.

5. Andrew's favorite breakfast is french toast made with cinnamon bread.

6. Andrew's favorite television shows are iCarly and Spongebob Squarepants. He could watch them all night if I let him.

7. Andrew loves going to school. He currently attends the special education preschool at Burr Hill Elementary School in Higganum, Connecticut, which is part of Regional School District #17.

8. Andrew's favorite activity on the playground is climbing up the slide and then sliding down.

9. Andrew can run, jump and play, just like other kid's his age. It has just taken him longer to learn how to do some of these things.

10. Andrew loves for me to read "How Does a Dinosaur Say Good-Night?" to him every night before bed.

11. Andrew loves playing with the water in the bathtub during his bath, but he hates when I pour water over his head when I wash his hair.

12. Andrew loves his John Deere tractor. He rides it in a circle in the driveway.

13. Delayed speech is a common issue in children with Down syndrome, due to low oral muscle tone. Andrew has learned some words that we can understand including mama, dada, help, pineapple, hi, bye, yeah, i do. He learns more words everyday, including some of the colors. Most of the time, only his family can understand what he is saying, but with more practice and development of his oral muscles, everyone should be able to understand him.

14. Andrew has also learned some sign language to help him communicate with others. He knows the signs for many common words that he needs to use in school, including more, play, thank you, yes and no.

15. Andrew usually gets along well with his younger sister, Hailey. They do play nicely with each other most of the time, but they do push each other occasionally. Sibling rivalry is still the same as with any siblings.

16. Andrew hates getting hair cut, the same as many other 3 year olds.

17. Andrew has taught all of us to enjoy the simple things in life...the fascination of a ladybug crawling across the table, the delight in watching water flow down the driveway. It's the memories that we are making together, the moments that we enjoy each other that are more important than getting the chores done.

18. During Andrew's first three years when he was in the Birth to Three early intervention program, he tried so hard to learn the basic skills that typical children seem to learn so easily. Crawling, walking, and climbing stairs were always so hard for him and the tears that we cried during therapy sessions were heart-wrenching. But, when it was over, he would look up at us and smile, and we would smother him with kisses--his reward for trying so hard. We still do the same today when he works and learning a new skill that is difficult for him.

19. Andrew loves his "Rizzie"...my mother.. He likes to work with her in the kitchen and she has been teaching him how to roll out dough to make pot pies and cardamon bread. And, he loves playing in her big bin of flour!

20. Andrew also loves his "Grammy"...my mother-in-law. She buys him most of his clothes and books. He loves for her to read to him and she enjoys all of his creations in his play kitchen, including his specialty...coffee!

21. Andrew is more alike his typical peers than different!

Some of Andrew's pictures appear in this video that my FaceBook friend, Lisa Smith, put together to celebrate the specialness of our children:
http://www.onetruemedia.com/shared?p=a8d2c4b8b1b4fc329a0ecc&skin_id=0

Also, for my first Wordless Wednesday post on Wednesday, March 24th, I will post pictures of Andrew doing "typical" preschool activities! Looking forward to talking with all of you soon!

The PPT Meeting that Finally Happened!

Andrew's PPT meeting finally happened...no cancellations for bad weather and no power outage or other disaster at the school. The meeting went really well and I am loving Andrew's team at the Regional District #17 school system (Haddam/Killingworth, CT).

Andrew will still be going to school 2 mornings a week, but we will now be going on Mondays and Thursdays so the OT can see him on Mondays while she is observing his classroom. After her initial observations, she will determine if a formal evaluation needs to be done. I am guessing that due to the results of the findings his preschool teacher had, that a formal evaluation will be done and he will receive OT services. He also will get to attend gym class on Mondays, rather than the music class he was going to on Tuesdays....he HATED music class. Too many directions to follow for him. Plus, he is also qualified for ESY, the summer program. He will receive the same classroom time and services that he received during the year, based on what his schedule is at the end of the year.

I also asked for and am receiving a PT evaluation for Andrew, to be done within the next 45 days. Andrew has a definite weakness on the left side of his body. I'm hoping that the PT can help with that.

We also discussed some of his behaviors at home and his communication issues. I have agreed to have them use more sign language with Andrew. I had been reluctant to do that because I found that he would rather use sign instead of speech, even if he was able to speak the word he needed. We have decided to use the sign and speak the word and make him do the same, rather than just rely on the sign without making him follow up with a word approximation. So, we will be going back to the daily use of signs and his 'Signing Times" DVDs so we can re-learn signs that we were using with Andrew. His teacher and speech therapist will also be providing me with a list of commonly used words in the classroom and therapy so we can also use them at home.

Andrew's speech therapist will also be sending home materials to help me get Andrew more familiar with our daily schedules at home. I have been having a terrible time getting him focused on what needs to get done in the morning...most likely because we don't have a consistent morning schedule like we do for the evenings. That makes it difficult for a routine-oriented kid like Andrew. His therapist will be putting together a board for Andrew with pictures that will reflect our daily routine. Each day I can lay out the cards in the order of what needs to get done that morning...breakfast, followed by dressing, tooth brushing and grooming, and then getting ready to leave and getting in the car. I was initially going to purchase the iPrompts app for my iPhone (a $50) investment for this purpose. His team suggested that we start with the board, which will be a more concrete reminder of what needs to be done and he can remove each picture as the task is accomplished. They weren't sure if the schedule being shown would work for him right now...it may be too abstract for him. So, for now, I'm saving the $50 and trying it out first, with the idea that we can transition later. It will eventually work better when we are not home, because I know that I am not going to carry around a board and pictures and scramble around to find the appropriate picture for the situation we're in.

So, that's where we are for now. If Andrew does end up getting the OT and PT services, then I am going to request that he attends school for another session every week to make up for time out of the classroom for the extra services. But for now, I just want him to get readjusted to school since he won't know some of the kids in Monday's class. It's just preschool and we have many, many years of school ahead of us. I also want him to just enjoy being a kid and spending time with his mother and his sister during the week. We have so much more to do now that the spring weather is starting to head our way!

Kim :)

Finally...it should happpen tomorrow...

Well, hopefully the day is almost here! After 3 scheduled PPT meetings, all cancelled due to the winter weather, I should finally get Andrew's PPT meeting in...his first "official" PPT meeting. Back in December when he had his meeting, a mere 10 days before he was scheduled to start preschool, Andrew's Birth-to-Three PT and I sat in front of the team from school and was told that Andrew's evaluation (that his PT did), did not qualify him for the special education preschool program. They told me...HE ISN'T DELAYED ENOUGH! We were in shock to learn that his Down syndrome diagnosis wasn't enough to qualify him for preschool. His diagnosis doesn't come into effect until kindergarten. Uh, okay. Maybe I should have done some research on that, but I didn't. I thought his diagnosis would qualify him and that his evaluation would show the school how well his is doing and about the potential he had. Duh...

So, anyway. The school took him 2 mornings a week with an hour of speech therapy (since he is definitely delayed in that area). His preschool teacher was going to evaluate him over the following 6 weeks against the preschool standards in Connecticut. After the 6 weeks, the school would determine his placement. And my thoughts were, "What? You're going to wait for him to get more delayed before you help him?" That seems a little backwards to me!

The day before his first planned PPT meeting, scheduled for February 3rd, I met with his teacher outside the school when I was picking up Andrew. She gave me a copy of her evaluation and said that he definitely qualified for the preschool program and we would determine his services the next morning at his PPT meeting. A great plan, but Mother Nature decided to intervene with snow, and as a result, school was delayed and our 8am meeting cancelled. Twice more, school was delayed or cancelled, therefore cancelling our early morning meetings.

Finally, unless some other freak weather pattern develops, I should finally get Andrew's PPT meeting tomorrow morning. His teacher alluded to adding another day for him, so hopefully, Andrew will be attending school for 3 sessions and continuing speech therapy. I can already tell that his therapy sessions are helping. His sounds have come such a long way since he started school. I am so excited for Andrew to continue his steady progression.

Also, I will finally get to address some of my concerns and my goals for Andrew for the remainder of the school year....his need for physical therapy and my hope that his teacher might think he is ready for potty training among other thoughts I had carefully typed into my iPhone notes, as I do with everything these days.

Wish me luck that tomorrow's meeting not only happens, but goes well. I'm guessing it has to be A LOT better than his first meeting.

Kim :)

Spread the Word to End the Word

For months now I've been meaning to get back to my blogging, but with Andrew starting school and then the holidays, I never seemed to take the time to do it. Finally, today seemed like the perfect day to get back to it.

I struggled all day with what I would write for this special day...an important day...the beginning of a new outlook on those with disabilities. It's a cause that is important to my family and especially for Andrew. He didn't choose to be born with Down syndrome, and we didn't choose to have a child with Down syndrome, or any disability for that matter. But we were blessed with Andrew, a blessing that I am reminded of every time I look at him and see his face light up in a smile. My happy, happy boy who loves unconditionally and only wants to receive the same love in return.

I never really found the words, but they were found for me. Out of the blue I received an email from my sister with an attachment. I cried as I read the letter that she wrote, for I was again reminded of the love and support that Andrew gets from my family...the same unconditional love that he offers to everyone he sees everyday. Below is the text of the email and the letter that was attached. Thank you, Kate, for sharing this with us. Andrew loves you very much!




"Kim, My bosses at H&R Block let me put up a notice in the offices about the Spread the Word campaign. Attached is the little write up I did. Thought you might want to see. Kate"

Spread The Word to End The Word

On December 12, 2006, my sister gave birth to my one and only nephew, Andrew (or Spike, as I like to call him). Right away the doctors knew that there was something different, I say special, about Andrew. He has Down Syndrome. Andrew has had a tougher childhood than most kids. All the different milestones of learning to crawl, walk and talk have taken longer for Andrew and his speech is still behind others his age. However, with the love of my sister and our family, he has flourished into such a wonderful, exuberant and happy kid. This past December he was accepted into special education preschool where he is getting to interact with other kids his age in an environment that is the same as regular preschool. There are so many people who have been standing by Andrew and encouraging him every step of the way.

I am hoping that I can count on you to stand by him and others as well. Today (March 3, 2010) is this year’s start date for Special Olympics and their Spread The Word to End The Word campaign. The use of the “R” word has become too commonplace and needs to be gone from people’s vocabularies. I am asking you to please take 5 minutes out of your day and log on to http://www.r-word.org/ and take the pledge to rid your vocabulary of the R word. I am also asking you to please pass this on to as many people as you can.

Andrew may be growing up differently than other 3 year olds but he deserves to do it in a world without hate, bigotry and discrimination. My family and I appreciate any support that you feel you can give towards this movement.

Thank you.

Sincerely,

Kate Lewandowski
H&R Block-Sears Office

In addition to this letter that she posted at work, she also sent an email to all of her contacts asking for their support and urging them to sign the pledge. I always knew that I have a special family, but her actions confirm and remind me that I will always have their unwavering support and dedication to Andrew in his complicated and extraordinary journey through life. A life that is always celebrated in our family, and hopefully in the future, celebrated and respected everywhere.

Celebrate the day, and hug your kids a little tighter and enjoy the love that they give you!

Kim :)