- 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.
Monica had the privilege of traveling to England to visit her Aunt Terry. She was great company for her mother and a wonderful guest. She took photos of every new experience but that is too many to include here! We will share just an overview of the delightful adventure.
We drove across the Ambassador Bridge into Canada and noticed lots of wind turbines along the highway. We checked in at the Toronto airport. We charged our phones and enjoyed the iPads for travelers. The flight to London was smooth. Monica brought knitting, books, workbooks and her iPad. She was too busy to sleep, but when she got on the train out of Gatwick airport she gave in to a few winks.
We changed trains at St. Pancras/Kings Cross. We bought postcards and stamps there.
Monica’s Uncle David picked us up at the Scarborough train station in a car with the steering wheel on the right side and drove on the left side of the road!
Monica loved relaxing and sharing a cup of tea with her family there, but still did her best to help out with emptying and loading the dishwasher and setting the table.
Since we were there for Mardi Gras, Uncle David took us to the Scarborough events for Pancake Day. The Pancake Races had teams from different organizations running obstacle courses while flipping pancakes in crazy costumes. Then we walked to the sea to see Skipping day in which the children remember skipping with the old fishing ropes when the fisherman replaced them with new.
For the first Friday of Lent, Uncle David brought in Fish and Chips and Mushy Peas!
Monica’s cousins arrived on the weekend and we celebrated a birthday together.
Monica was the one who knew how to set the timer on the phone to take a group photo!
On a very windy day, we drove around Scarborough castle and saw the north beach.
After a week of really getting to know her aunt and uncle, we had to leave. We took the train back to London and Monica’s cousin’s girlfriend met us for a walking tour of Leicester Square, Trafalgar Square, a view of a guard and the entrance to Buckingham Palace, then a stop at the Treasury where her cousin works, a peek at Big Ben and the Eye.
Then supper and good night’s sleep before the Uber taxi took us to the train back to Gatwick.
It was a very long flight with an unplanned fuel and de-icing stop in Quebec City. Monica played her President’s game on her iPad so many times she hit a new high score.
Back at Toronto airport, we scraped the snow off the car when we found it in the long term lot and headed for home. We were so happy to be greeted by Monica’s nieces and nephew!
Everyone knows Monica loves the Sound of Music. Our good friend Melissa made a dream come true this weekend. Melissa organized a trip to Columbus to see the Broadway production of Sound of Music. Monica packed her bag herself and could not wait to meet up with the girls on Saturday. We were impressed that she remembered to pack things like her earplugs so she could go swimming, a little container to take her thyroid medicine and vitamins, and her charger for her phone. There were four chaperones and four young ladies about Monica’s age on the trip.
They stopped at a Dunkin Donuts for a break and arrived at the hotel mid-afternoon.
They had a blast in the pool. They enjoyed the Happy Hour snacks.
They got all dressed up and headed out to the Ohio Theater downtown.
Monica described everything to us. The theater, the orchestra, the set, the beautiful voices, the children! She loved everything about seeing the live performance. Afterwards, they positioned themselves where the actors came out and Monica got to meet the woman who played Maria von Trapp. What a thrill for her!
When they got back to the hotel they had pizza and cookies and giggled in their pajamas.
In the morning, they all went to Mass together at St. Patrick church and out to lunch at Spaghetti Warehouse.
This weekend excursion is something we never imagined would happen. We never thought we would have an opportunity for Monica to be included and taken care of so well. We could relax at home and know she was safe and having a wonderful time.
Because of a confusion at Monica’s job, Monica has been temporarily unemployed. Sometimes it is difficult for a person with cognitive disability to distinguish nuanced situations. At her last job some of these nuances occurred. On some days she was asked to join the residents of her nursing home for coffee, but on another day, she poured herself a cup and was disciplined. On some days free food was brought in for celebrations, but on another day she was accused of stealing a soda that was left in the refrigerator. She would refer to her phone for the time, but then if it rang and she answered it, it was a violation. Some of these incidents festered and her parents had not heard about them. (They came to light in a later interview.) So Monica has been home for several weeks, taking a breather so to speak. During that time she has greatly lamented her infractions, to the extent she can understand them. She has cried and journaled, but mostly looked positively toward her next venture.
Today her venture began. Her employer has placed her in a new facility which is actually a little closer to home. She was incredibly excited all the past week telling her relatives and friends about her new placement. Mom and Monica went out and Monica bought a watch so that she no longer needs to look to her phone at work…her phone is being safely stored in her locker during time on the clock. A journal book was purchased and inaugurated so that her employer can note any issues that come up. Daily it will circuit between home and work with a brief comment by employer and parents. Monica understands (we think) that it is better if she just eats and drinks food stuffs that she brings from home, and she cannot serve herself anything at work that she has not brought. This is a little difficult, sometimes there are mini-celebrations and birthdays celebrated during break. We will need to keep developing her sensitivities in this area.
So, today at the evening dinner table Monica reviewed her notes of the day and told us with sparkly eyes and cherubic smile all that had happened at work, new friends, new instructions and duties, new work hours. How happy we were for her, to see her laugh and almost trip over her words in her excitement. Then later this evening I was reading and came across this quote from Pope John Paul II’s document on “Human Work” Laborem Exercens (Section 22 – The Disabled Person and Work). I teared up when I read this and was struck with gratitude for all the efforts made by the agencies and employers who have worked with Monica. Despite occasional stumbles, they are participating in achieving this difficult good.
Pope John Paul II wrote in 1981:
“Recently, national communities and international organizations have turned their attention to another question connected with work, one full of implications: the question of disabled people. They too are fully human subjects with corresponding innate, sacred and inviolable rights, and, in spite of the limitations and sufferings affecting their bodies and faculties, they point up more clearly the dignity and greatness of man. Since disabled people are subjects with all their rights, they should be helped to participate in the life of society in all its aspects and at all the levels accessible to their capacities. The disabled person is one of us and participates fully in the same humanity that we possess. It would be radically unworthy of man, and a denial of our common humanity, to admit to the life of the community, and thus admit to work, only those who are fully functional. To do so would be to practise a serious form of discrimination, that of the strong and healthy against the weak and sick. Work in the objective sense should be subordinated, in this circumstance too, to the dignity of man, to the subject of work and not to economic advantage.
The various bodies involved in the world of labour, both the direct and the indirect employer, should therefore by means of effective and appropriate measures foster the right of disabled people to professional training and work, so that they can be given a productive activity suited to them. Many practical problems arise at this point, as well as legal and economic ones; but the community, that is to say, the public authorities, associations and intermediate groups, business enterprises and the disabled themselves should pool their ideas and resources so as to attain this goal that must not be shirked: that disabled people may be offered work according to their capabilities, for this is demanded by their dignity as persons and as subjects of work. Each community will be able to set up suitable structures for finding or creating jobs for such people both in the usual public or private enterprises, by offering them ordinary or suitably adapted jobs, and in what are called “protected” enterprises and surroundings.
Careful attention must be devoted to the physical and psychological working conditions of disabled people-as for all workers-to their just remuneration, to the possibility of their promotion, and to the elimination of various obstacles. Without hiding the fact that this is a complex and difficult task, it is to be hoped that a correct concept of labour in the subjective sense will produce a situation which will make it possible for disabled people to feel that they are not cut off from the working world or dependent upon society, but that they are full-scale subjects of work, useful, respected for their human dignity and called to contribute to the progress and welfare of their families and of the community according to their particular capacities.”
Last fall, Monica went along with her Daddy for some physical therapy appointments after a back injury. She charmed the receptionist and all the therapists, as usual. She also paid close attention to the instructions and gave her Dad reminders about the exercises he should be doing. He was quickly cured.
In May, Monica had some aches and pains that were bothering her. I gave her Tylenol and told her they would go away. She kept up her complaints for a few days and I kept telling her they would go away. One day, Monica texted me from work to ‘please call the Physical Therapy place!”
So I realized her pains weren’t really going away and I guess I should do something. So when I called the Physical Therapy place, the receptionist said ‘oh yes, I was expecting your call. Monica called in and talked to one of the therapists.”
I gasped, “Did she make an appointment?”
Jan answered, “she tried, but we knew someone would have to bring her in, so I told her to have you call me.”
That night at dinner, we asked Monica about her call to the Physical Therapy place. She said she called them during her lunch break at work. So, we asked her how she got the phone number. And she replied, like anyone else, “I googled it!”
Here are the rules my parents made for me.
Monica’s Cell Phone Rules
• I will always keep track of where my phone is, and take good care of it.
• When the phone rings, I will answer “Hello, this is Monica.”
• I will always use good manners on the phone. I will use words like please, thank you, excuse me, and you’re welcome.
• No calls or messages before 8 a.m.
• I will not call someone when they are at work.
• If I call someone and they do not answer, I will leave a message and tell them my name in the message. I will not call them again until they call me.
• If I write a message to someone, I will write a whole sentence and use my best spelling.
• I will not write another message to someone until they answer me.
• If I want to take someone’s picture, I will ask “May I take a picture of you?
• No phone during meals.
• No phone if someone is talking to me.
• No phone during family movies or family games.
• I will make sure my phone is turned off when I am in church, in restaurants, or quiet places.
• I will keep my phone in my bag when I am at work.
• I will leave the phone on the island in the kitchen by 9 p.m.
• No calls or messages after 9 p.m.