interview | Lessons from my daughter

Today, we meet Laura and Katie.

I believe I first talked to Laura many years ago when I was still digesting Emily’s diagnosis.

I had the chance to finally meet Laura, Katie and other members of their family at the 5p- Society conference in NYC in July 2013.

Let’s meet them.

Katherine “Katie” Castillo

1. Can you tell me about your family?

Katie is the oldest of four kids. She has a brother, Joey who is 25, another brother, Mikey who is 22, and a sister, Maggie, who is 20 (almost 21). Katie loves her family very much and is very proud of them and their accomplishments. She also has two dogs and a cat – Dewi the tortoise hair cat, Reese the half lab/half Besinji dog, and Rosie, the Australian Shepard dog. Her brother Joey gets married in May, so we will be adding Sydney to the family soon. Katie lives at home with mom and dad, with no future plans to go anywhere. She also has a lot of extended family members, grandparents that she adores, aunts, uncles, cousins and baby cousins. She wants to be called Tia K to her baby cousins.

2. Tell me about your loved one with Cri du Chat Syndrome:

Katie was born on her due date 11/11/1987. She was 5lbs 10oz. When she was birthed she had a very soft kitten-like cry that I exclaimed as being really cute. Little did I know that there was a reason behind the cry and three hours after birth the doctor came in and told me what he suspected – Cri du Chat Syndrome. Two weeks later we got the confirmed diagnoses. Katie is considered a moderate-mild case of the syndrome. Her breakpoint is 14.2ptr. She can walk, talk, bathe herself, eat by herself, toilet herself and read. She does have limitations though, she still has trouble with safety rules and I don’t trust her around the stove (maybe I just don’t have the patience to trust her!)

3. Tell me about doctor appointments, therapies or school:

Katie started in home occupational therapy at around four months and continued until she was 22 months old. Then she went into a “preschool” a couple of days a week until she turned 3. She went to special day class preschool with the local school district for the next couple of years. When it was time for her to enter kindergarten, a decision was made to put her into a full-inclusion class. Because of her November birth date and the unwillingness of the kindergarten teach to adhere to the full inclusion environment, Katie went into first grade instead. She had a tough time, but she really worked hard during her elementary school years. Thanks to her teachers and special ed teachers who worked to make it happen. She continued in a full inclusion program, only being pulled out for speech therapy and adaptive PE until high school. It was in high school that the gap between her peers and her learning that a change needed to be made and she was put into a special day class. She thrived in this environment. She graduated from high school with a certificate of completion and it was one of the happiest days of my life. She graduated from Transition and she has been in an adult program called Path Point Discoveries since January of 2010. My only wish for her here is that she would be employable and actually have a job.

4. What else would you like the world to know?

Katie is a very social young lady and loves people and animals. She goes up to just about anyone and tries to talk with them, which is okay, but again those safety issues come into play. She was a Girl Scout, went camping and sold cookies!! Learned a lot about teamwork and being a good citizen. She also likes boys and seems to always have a boyfriend, but doesn’t like to talk about them or acknowledge that she does. The first time I realized this she was in high school walking out to meet me after school and her she comes walking with a group of kids and she was holding this boys hand. My eyes much have gotten very big and the minute she saw me she dropped his hand. I questioned her about it and she was closed mouth. Recently she was given a bunch of jewelry. I questioned where she got it, who gave it to her, and again closed mouth. Come to find out it was given to her from a boy — she has a boyfriend — and we also found out that the jewelry belonged to the boys mother and Katie had to return it!!

Katie loves to go to church on Sunday and can sing the songs, know all her prayers and says a prayer to Mary at every mass. Another happy and proud day of my life was when she made her 1st Communion in 2nd grade. People around us always comment on how pretty she is and how great she does in mass.

Katie does well at the dentist and sits like a pro while the dentist cleans her teeth or works on any cavities she might have. She also wore braces for 5 years and loves her smile. She sat really well for the orthodontist.

Katie loves to shop and loves to accompany me on Sunday when we go to the grocery store. She likes to look good and can usually be found in dresses or skirts.

She considers herself my assistant at the 5p- Society conferences. One year she asked me if she could get a suit. I asked her why she needed a suit and she said because I’m your assistant and I need a suit. So we got a suit and she wore it at the conference. When I introduced her she decided to model her suit for everyone. It was quite hilarious and I actually got teary eyed! She is pretty helpful at the conference and likes to meet and greet with everyone!!

Katie loves to read and can read at a 5th grade level. She loves Disney Princesses. Her favorite character is Tinker Bell. Her favorite food is a tie between a cheeseburger or shrimp. She has a great sense of humor and loves Lucile Ball.

I remember the suit 🙂 Katie was so proud and she was and still is inspiring

Well, the weekend as come and gone and I was so fascinated by the snow continuing to fall that I forgot to blog…

We couldn’t even find my car yesterday morning.

Look at Emily’s school this morning

Enough with the snow!

This week I want you to meet Kent and Kelli.

1. Can you tell me about your family?

We are a blended family. I have 3 children (Kelli 30, Kevin 27, Ethan 22) from a previous marriage and my wife Betty has 1 child, also from a previous marriage (Kristin 31). We have 3 granddaughters (Shea, 8 and Cali 5 (from Kristin), and Lillian 1 (fromKevin). Betty and I live in a small town just north of the Kansas City metro area and our children live relatively close.

2. Tell me about your loved one with cri du chat syndrome/

My daughter Kelli was born with 5p- in 1984. She had a normal birth and I fell in love with her immediately. She had a headful of long dark hair. At her one month well baby check-up, the pediatrician discovered a double inguinal hernia and I was devastated. We took her to Kansas City’s Children’s Mercy Hospital for the repair operation and when the surgeon gave us his report, he said that the operation went fine, but some people in the operating room did not like the way she cried. She did have a rather squeaky cry but, being my first child, I did not think anything of it.

Then they sent in the geneticist and he told us he suspected a partial chromosome deletion on #5 thatwould result in “severe mental retardation”. They drew blood for the genetics test and that began the longest two weeks of my life. Every time I looked at Kelli, I would try and tell if she looked “normal” or not. When the Genetic Counselor called and invited us in for a meeting, I knew the answer and went home from work to tell my wife in person. At the subsequent meeting, the Genetic Counselor and Social Work advised us to give up Kelli and put her in a home. They said she would not be trainable, would not walk, speak, or ever be toilet trained.

Being rather contrarian, we took her home and started researching the syndrome. I found some rather grim information at the University of Kansas Medical Center library, spending days in their stacks. We also found an early intervention center, the Infant Development Center at Shawnee Mission Hospital and started Kelli in school at the ripe old age of 3 months.

Since the medical literature was so sparse on 5p-, I started looking for other families in Kansas City to communicate with and share information. Through our genetic counselor, we did find one family with a boy of about 6 who could walk and we found that encouraging. Also, at that time there was a publication called Exceptional Parent magazine that had a column devoted to rare conditions and parents could write in and connect with other parents. I picked up a few names from past issues and every family I found seemed to know one or two otherfamilies. At the time (1984) personal computers we not yet common and I was working for Apple, so I started building a data base of families that I connected with. I also picked-up several names from a study that had recently been done by a doctoral student at the Medical College of Virginia.

In mid-1985, I discovered that about 6 families were going to meet at a Holiday Inn Holidome (remember them?) in Indianapolis on a Saturday in August. We jumped on an airplane and joined them. We all sat in a circle by the pool with the kids trapped in the middle and shared our experiences (talking very loudly), cried, laughed, and made dear friends. At the end of this day, I wanted more.

I wanted to invite all of the families we could find to share their experiences. I wanted to bring inmedical professionals who had worked with our kids. I wanted that doctoral student to give us her insights as she had seen more kids with the syndrome thananyone in the world at that point. I wanted hope.

I organized our first meeting with parents and professionals in Chicago in Aug 1986. From this meeting, the 5p- Society was founded and incorporated as a not-for-profit group. The Society has organized a national conference each year since. This July 2015 we will host our 30thconference in Indianapolis, my first visit back since meeting that brave group of parents so long ago.

3. Tell me about doctor appointment, therapies or school.

At this point, I don’t remember much about Kelli’s doctors except that she had a bunch and they all treated her great. We had to help them keep their expectations high for Kelli and we did this by telling stories of other kids with the syndrome that we had met.

Kelli attended the Infant Development Center for 4 years and then moved into the public school system. Over the years, we had the typical challenges with the school district not wanting to provide therapies or a classroom aid. She had some great and loving teachers and some not so much. It was a time of exuberant highs and frustrating lows, but Kelli endured and so did her parents.

4. Tell me a success story.

Kelli’s life is a success story.

5. What else would you like the world to know?

Kelli now lives in a group home in suburban Kansas City. I believe this is the best environment for hercontinued growth. It is not as clean or as homey as I would like but Kelli is treated with love and respect and is happy.

Oh, by the way, she does walk, and talk, and smile, and laugh.