Hello Everyone!

I am now 9 years old and will be 10 in a few months. I have grown a lot and I am doing so many wonderful things. I can now read some sight words like horse, car, ball, boy, girl, the, and, I, a, yellow, airplane, green and spoon just to name a few. My Mommy and Daddy are so proud of how hard I have been working and what I can do. I have also started adding some simple math problems. My teacher is working with me with touch math. It is hard but I keep trying. I am also using the Handwriting With Out Tears program and my handwriting is improving. Although it is hard for me at times, I am getting better. I have fine motor problems that make it hard for me to write.

My problems with Echolalia have pretty much disappeared. I only echo what people say if I am really tired or confused. My communication skills are getting much better and I am able to talk with others a lot more now. I do my best communication though when I am playing and using my imagination. I love playing dollhouse and pretending I am a teacher and teaching my dolls and stuffed animals. Mommy likes to sneak in the hall and listen to me while I play.

I love to sing and dance. I love The Cheetah Girls from Disney Channel and Lizzie McGuire. I will watch the Lizzie McGuire Movie over and over again if Mommy and Daddy let me. I tell them I want to sing on stage just like her. I also love Faith Hill and Shania Twain. I like to have my finger nails painted and love clothes. When I need some quiet time, I like to look at books and family photo albums. I love helping Mommy in the kitchen when she cooks. I have my own cookbooks just like her. I love to watch 30 minute Meals with Rachel Ray with my Mommy. My Mommy got me a great Visual Cookbook for people with special needs that are visual learners and non-readers. I can make my own grilled cheese now and peanut butter and jelly sandwich.

A few years ago I tried Equestrian Therapy, which I did for about a year. I loved the horse Woody I use to ride. I miss him and the two wonderful volunteers John and Tammy who worked with me. The program is called AeRT. They’re in Chula Vista, California. It is a wonderful program. Last year I had fun taking private swimming lessons. My Occupation Therapist said it was good for me. All I know is I loved it! Swimming is one of my favorite things to do. I do have problems getting my lower body to work with my upper body. I love swimming and will keep trying though.

I am getting lots of therapy at school and it really helps me a lot. I see my speech teacher 3 times a week for 30 minutes each session, the OT about once a week and the Physical Therapist 1-2 times a month. All my goals though are in my daily routine.

Several years ago, a wonderful Occupational Therapist in San Diego started me on brush therapy and an Engine Level program (I get very low levels of alertness at times and need to be revved up). I have sensory integration issues and I would get very sick to my stomach when I was over stimulated. This could be by noises, sights and smells. The brush therapy has really worked to get rid of that. I still get overwhelmed, but I do not get sick much anymore.

I am learning right now to tell people when my engine level is low. I still need to work on that. My teacher and aides are good at telling and help me get revved up by doing certain exercise with me. Jumping Jacks can get me going again and I love playing hockey at PE.

I think my Mommy is having problems with low levels of alertness. It has taken her 4 years to update my web site. Maybe she should do some jumping jacks.

I have been very blessed with good physical health the past several years other then flu bugs and colds like everyone else. It does hit me harder though then my family and takes me longer to get over. I have had follow up visits with Orthopedics, my hips are fine, and I have had my eyes rechecked recently. They are also fine.

I receive Occupational therapy for fine motor skills, Physical Therapy for gross motor skills and Speech for communication skills. My articulation when I talk is understandable. I have a hard time putting feelings into words and holding a conversation or starting one with someone.

My family is doing great. They all love me very much and Mommy says I make her smile from the inside out all the time. I have my Daddy wrapped around my little finger! I think we all make a great team. My brother and sister are always cheering me on and happy when I learn something new. They are trying to teach me how to tie my shoes right now. I have a hard time with that. I have been learning at school how to snap and zip and can zip my own coat now all by myself. I am also working on shoe tying at school.

I am now in a 3/4th grade mix special education class. I have a great teacher and there are two great aides in the class. Mommy and Daddy feel like God really sent us some wonderful blessing by putting them in our lives. They really care about me and want to see me succeed. Mommy and Daddy think I have really come a long way being with my new teacher, aides and school this year.

I hope you will share my page with others and I hope my story and update gives you hope and inspiration. I am on the milder side of the syndrome. I am moderately mentally retarded and my main issues with CdLS are in the mental retardation, communication skills, sensory issues, fine motor and gross motor areas. I have all my limbs and I am actually on the tall side for a cdls child. I am extremely thin but doing great for a person with cdls. I have many of the characteristics of CdLS and look like many of my friends who have the syndrome. Much like children with Downs Syndrome resembles each other. I have been very lucky and spared some of the more severe physical problems that can come from having CdLS.

Cornelia de Lange Syndrome does have a wide spectrum. On my site are links to others so you can see and read other stories. I hope you will visit them all. If you visit my Conference section of my site you will find links to other sites next to each child’s photo.

Mommy would very much like me to thank Miss Vicki. She put my web site together and put all moms writing and pictures in a beautiful display for us so we could spread awareness about CdLS. Miss Vicki’s daughter Marci also has a link on my web site. It can be located on my home page. When you read about Marci you will never look at a Butterfly the same way again. My Mommy always thinks of Marci when she sees a beautiful butterfly.

Please sign my guest book and please share my web site. It makes my Mommy and Daddy feel good when my web site has helped someone, as a website helped them when they first found out I had CdLS.

God bless you all and thanks for stopping by Katie’s Corner.

Told in Katie’s voice by Lisa (Katie’s Mom)