- When Monica was little, I was sometimes overwhelmed with medical questions. Monica just had more issues than our other kids. Well, it does make sense. The statistics from the CDC show about 50% of babies with Down Syndrome have a heart defect, up to 75% may have hearing loss, up to 50% have sleep apnea, about 50% will require glasses, and up to 60% have eye diseases like cataracts and many have digestive tract issues. Over the years, Monica has proved that her medical events are just more adventures. I have included details about her open-heart surgery, frequent ear infections, broken ankle, and thyroid issues in other blog posts. She continues to charm her medical providers and her positive outlook makes these challenges easier.
- When each medical question came up, I found myself searching for someone who had been through it before. How do you prepare a kid for surgery? How do you keep them from losing their hearing aids? So, I am going to share our latest adventure in case someone else is wondering….what if my child with Down Syndrome has to have an Endoscopy or Colonoscopy?
- If you aren’t interested, feel free to check back for the next post!
- Monica has been having frequent loose stools and with Celiac Disease common among people with Down Syndrome, not to mention that she has two brothers with Celiac, I thought we ought to do some testing again. She had had the blood test for Celiac in the past, maybe 10 years ago, but that doesn’t completely rule it out. After doing the new and improved blood tests, and including the newer genetic test, and stool tests, the gastroenterologist was pretty sure it could not be Celiac Disease, but couldn’t say what was wrong without ‘going in’.
- The prep for the endoscopy and colonoscopy is similar to adults, but they actually try to be a little gentler with young people, spreading it out over a longer period. So beginning on a Thursday morning, Monica could have only clear liquids, a dose of stool softener, and then in the afternoon a series of Gatorade with laxative stirred in.
- This is when the fun begins.
- I highly recommend having brothers who will play games and yell ‘Chug! Chug!’ to keep the afternoon flowing…
- Monica was such a good sport, giving reports after each trip to the bathroom.
- She woke during the night to go a few times and had some stomach cramping, but really slept almost normally.
- Friday morning, she could have only a few sips of water with her thyroid medication.
- She packed her own bag for the surgery center. Games, coloring books, markers, prayer books, a favorite stuffed animal, stationery and her address book, photo books: enough to last weeks.
- On arrival, she changed into the hospital gown folding her own clothes neatly into the bag provided by the surgery center.
- I refused the pregnancy test for her and had to sign a form saying so.
- The anesthesiologist asked her if she was too old for stickers and then decided to bring them anyway. Disney princesses.
- She was trying to show the nurses some photos in her phone of her older brother’s trip to Rome, but we observed her speech was becoming slurred – the Versed was working already.
- Soon, she was rolled away.
- When they called me back in, she said, “I had a great nap!”
- They let her choose Diet Pepsi and Oreos to help her wake up.
- The gastroenterologist brought photos from each part she examined during the procedure. Monica was fascinated. She tried to match the photo label with the diagram showing where it was taken.
- She was back to herself within an hour and we were headed home. She had no after effects from the procedure or the anesthesia!
- When we know more about results, I can write those too.
We are fortunate in Cleveland to have great support for families affected by Down Syndrome. When Monica was born, I was given a flyer in the hospital with a number to call. I joined the Upside of Downs and got on their newsletter mailing list. I soon took advantage of many opportunities.
When Monica was approaching open-heart surgery, I was able to talk to another mother whose son with Down Syndrome had also had heart surgery as an infant. I attended a medical information night with several different medical professionals addressing problems common to individuals with Down Syndrome. I got hints on handling glasses and hearing aids for a young child. Many educational seminars have been held that were helpful to me – some on education issues, some on therapies and behavior. I have always learned a lot and enjoyed meeting other parents.
Another great benefit is the social opportunities for Monica. The Upside of Downs has held many fun activities that we have enjoyed. Some years our family life has just been so full of our own school and sport activities that we haven’t been able to attend many events, but it has been a great support just reading the newsletter.
Recently Monica attended two fun events planned by Upside of Downs. One was a Cleveland Indians game with friends.
Last weekend she went to Patterson’s Farm. Monica took a lot of photos, but here are a few she is in.
October is Down Syndrome Awareness month – fun things ahead! Looking forward to visiting City Hall on Monday, October 12th – Cleveland Down Syndrome Day.
Like in any field, there are many acronyms you need to know when you have a child with special needs. The laws that protect the rights of people with disabilities have systems in place for parents/guardians to meet with those people/schools/agencies that provide services to their child. These meetings all have acronyms and many forms and it will feel like everyone understands except you!
Just like budget discussions within your family, there are always competing goals. At home, you might have these goals: 1) spend as little as possible on groceries and 2) provide as nutritious and delicious meals as possible for your family. When it comes to meeting the needs of your child, your goal is to get everything your child needs. The agency you are meeting with has limits to the resources that must be spread fairly among the population needing those services. I usually felt very emotional during these meetings. It always seemed like the professionals at the table knew so much more about what services could be delivered and how it could work, and I often wasn’t even sure the questions to ask. This was my responsibility to learn about, and we did try, but it was still so intense weighing whether I fought hard enough to make sure my child got what was fair and best for her.
Now that Monica is out of school, we use an ISP – Individualized Service Plan which includes Employment Services and Individual Skill Development Plan. We meet with a Support Administrator from the County and an Employment Services specialist from the County and if appropriate, someone from the employer. In November, I requested a meeting with the Support Administrator to talk about looking for the next job for Monica. Monica had been in her current job for a year and I wanted her to keep learning new skills and further her growth. There were also some things I was concerned about.
In December, I had my best meeting of Monica’s life. For maybe the first time, I felt like we were all really ‘on the same side’. Everyone really wanted to find the best next job for Monica. We discussed Monica’s personality and her abilities and interests and her family and social considerations. It was arranged for her to visit three job sites and observe the duties of the job, the setting, the supervisor and the co-workers. Everyone, especially Monica, could express her impressions of the job. We all had the same good feeling about one of the jobs. During the discussions there, I could feel that lump in my throat that I used to get at IEP meetings. I felt so strongly that I wanted this to work and I did not understand all the acronyms being thrown around about the funding and the level of support. But I could tell they all wanted it to work too. After the visits, Monica and I drew up a chart and talked about the different aspects of the jobs. We called the Support Administrator on the following Monday to tell her what Monica decided and she jumped in and made it happen.
Monica is now working out her notice from the current job and we’ll write another post when she is settled in the new position.
Monica lived all the events of her senior year to the fullest. We were delighted to see her in cap and gown and carrying the bouquet of roses. She was a terrific hostess at her celebration. Her work at a Summer Internship through the County put her in a position to be ready when a job opened in the fall. She now puts herself 110% into her new job. She is on the cleaning crew at a county building: sweeping, mopping, cleaning tables and chairs in the cafeteria, etc. She is progressing well in her piano lessons and played a string of songs for us at this year’s caroling party. She also works one morning a week for a mom of six kids here in Fairview Park as a mother’s helper. Mary Ellen’s volunteering is in transition now with Monica’s schedule changes, so the two of them will be investigating involvements they can do together, of course looking forward to having more time with her sister and her nieces in the year ahead.
Monica is delighting in her senior year of high school. She spends one-half day in the work program at Southwest General Hospital and one-half day at school. The SWGH work program has been especially encouraging for us because the program administrator has placed her in regular jobs (clearing trays in the cafeteria and laundering surgical towels) and in patient rooms (restocking supplies). Her job evaluations are very high and she so enjoys the work. This year Monica also began piano lessons. A professor at Baldwin Wallace University was intrigued by the challenge and has experimented with many teaching methods. We are thrilled with her progress, every day her singing and playing at the piano lifts our hearts. She will walk with her class at graduation in June!
Fairview High School has approved Monica for the Community Work Experience program at Polaris Career Center. She is in a rotation of jobs at Southwest General Hospital learning many skills that will allow her to be employable by graduation if not sooner! She loves working and the staff love her. In the afternoon Monica returns to Fairview HS for classes. Her curriculum there is very practical and focuses on functional math and language skills. Maybe you have gotten a note from her? Monica corresponds more than anyone else in our family, remembering birthdays, events and concerns. She loves to go to daily mass with Tim and Greg and outpours cheerful enthusiasm. And she tickles the ivory! Every day she practices piano with an amazing self motivation. On Sundays, when we have family spiritual reading, she eagerly participates and focuses on speaking very clearly. Greg and Monica attend parish youth group meetings and events, with Greg keeping a watchful eye on her without getting in the way of her making her own friends.
An excerpt from Christmas Letter 2009
Monica was thrilled to be designated Fairview’s #1 Fan by the school principal at a pep rally this fall. She continues to love high school and all its activities. This fall she helped as a ball-return girl with the JV volleyball team until she had surgery on her hand for a trigger finger. Her classroom now consists entirely of special needs children. So while her academics are now at the right level for her, she misses socializing with her former peers, but she manages, and has a good group of friends throughout the school. This year she and Greg joined our parish youth group and they are both enjoying the activities there. During the summer Monica began to click with the piano after years of random attacks. It is amazing, she now smartly plays some simple classics with great enthusiasm. Another first for Monica was her participating in a special needs dance class. She loves the lessons and the friends.
This year Mary Ellen, Rebecca and Monica went to Florida for our goddaughter, Sarah’s wedding shower. She is Tim’s niece. Later the whole family went down for the wedding. It was beautiful and a great family gathering. The kids were all seated with cousins at the reception and we really enjoyed sitting with Tim’s siblings. We also took time to explore some remote sites in Florida.
An excerpt from the Christmas Letter 2008
Rebecca and David made their wedding a beautiful family celebration having the brothers as groomsmen and Monica as a bridesmaid. When the other bridesmaids arrived a few days before the wedding, we were thrilled they insisted Monica join them for the shopping trips and luncheons. While the wedding may have been a major event — it was not the only amazing thing about 2008. In March, Monica had her Confirmation. She chose Therese for her Confirmation name, fitting because St. Therese had a beautiful relationship with her father and older sister and loved Jesus in a simple childlike way.
Monica loves high school. Besides the stimulation of all the students, she loves the pre-vocation class which has her working in the dining room at a nearby nursing home. Monica has been teaching us new ways to fold the cloth napkins for a formal dinner.