- 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.
Do you remember when you bought your green Honda, suddenly everywhere you went; you saw green Hondas? It was something like that when Monica was born. I don’t think I ever noticed people with Down syndrome before, but suddenly, one person with Down syndrome was waiting for his mother at the hair salon, a person with Down syndrome was wiping tables at the McDonald’s and a person with Down syndrome was boarding a city bus outside the shoe store. Unfortunately, in my early days of wondering all about what my new life with Monica would be, this gave me one more thing to wonder and worry about. Almost every adult with Down syndrome that I saw was overweight.
I am not an athlete, and I am not even thin, but I certainly hoped that I would be able to help my children maintain healthy bodies, and I wondered if this was going to be a really big challenge for Monica. I believe there are several factors that go into the body shape of an adult with Down syndrome. Some factors are genetic and some are environmental. We can control some of them.
Most kids with disabilities are not going to be able to participate in gym class and organized sports the same way that other kids do. It takes a little more work to find activities that are motivating. Even our experience with some of the Special Olympics events involved a lot of waiting and not so much physical activity. Many kids with Down syndrome need more supervision to keep them active and out of trouble, so it is an even greater temptation to use the TV as a babysitter. Monica really enjoys eating and she never feels full. Monica is not as easily engaged in the table conversation as other family members who might be speaking quickly and even interrupting or talking over each other and it is hard for her to keep up. Frequent illness or other health problems like joint pain, hypothyroidism, and diabetes, are very common among people with Down syndrome, and if you don’t feel well, you are going to be less active. It takes more effort for Monica to work against the low muscle tone and engage in physically demanding activities.
There are strategies for all these things. First of all, we have been proactive in Monica’s medical care. We had the well-baby and well-child visits on schedule. We always followed up on suggestions from the pediatrician to get the blood tests and see the specialists when he had questions. Most of her medical issues were resolved pretty quickly. Although she has gotten sick more frequently than our other kids and has more strange medical issues, she is overall a healthy person.
With some kids, parents have to make them do homework or read 15 minutes before they can go out to play. With Monica, I often had to make her ride her bike or shoot some baskets before doing the sedentary activity she was choosing. Having brothers also helped to keep her interested in outdoor active pursuits like tree-climbing and swinging from the rope. We have a great ice cream store just less than a mile from our house. We all love ice cream, so we made it a family policy that we only go there on foot or by bike, never by car. When assigning chores, I also give Monica jobs that require moving. She is good at jobs like emptying all the trashcans from all the rooms or carrying all the towels from the bathrooms to the laundry room.
We had pretty strict TV rules for our older kids, and so we had to stick to them for Monica. No TV Monday thru Thursday, and only an hour or two on Friday afternoon. No TV on the weekends unless it was a whole family event like watching the Olympics or a movie. Over time, TV rules were extended to computer games. Even solitaire with real cards is more active than playing it on a screen. This past year, we bought a medicine ball and have times throwing the ball. It is fun and Monica has gained in skill while burning calories.
Some of the food rules in our house were enforced for all the kids, probably to keep me from less cleanup work. But having rules in place has been very helpful for Monica, who probably doesn’t have the same self-control or natural ‘full’ feelings of the other kids. The biggest overall rule is we only eat in the kitchen (or at the dining room table for special occasions.) No one takes food to their room, their homework desk, in front of the computer, etc. In addition, we are pretty consistent with an afterschool snack and then nothing until dinner, and nothing after dinner. No grazing all afternoon or all day. Even on Saturday, we eat breakfast and lunch together as much as possible and don’t have people constantly pulling out something to eat. Our ‘outside’ eating rules probably came from budget considerations, but have been helpful for Monica too. We always pack a lunch or snack when we go to the zoo or park , or a brother’s game, so we’re not tempted by the posters at the concessions. It is much easier to hold to a rule of ‘never’ buy from the concession stand than ‘sometimes’ because kids will always want THIS to be the time. Monica’s understanding of degree is not as clear as the other kids. So it is better to have a rule that is black and white than one that has words like more or less. The snack I pack is going to be limited in fats and sugar and calories compared to what they would want from the concession stand. If we are eating at a restaurant, we always all have water to drink. We also started that rule because of the cost of a large family eating out, but it has been a great rule for Monica. She would probably never really understand the point that the price of a soda in a restaurant is so much more than buying it from the grocery on sale and that it could affect how often you could eat out. It is better for all of us to drink water than soda, but it is so much better for Monica to not keep drinking refills of non-nutritious calories.
Lest you think we are the meanest parents when it comes to food, I will let you know that we do have dessert almost every night. But I never set out the package of Oreos or the cookie jar, I give each person one or two cookies and put the package away. Or if we have ice cream, we have very small scoops. The idea is that we can all enjoy a sweet treat, but it should not be a large part of our calorie intake. We also have Family Movie Night at least once a month when we serve popcorn and soda and sometimes even candy halfway through the movie. Movie night and parties are the only times our kids have pop.
The most significant factor in keeping Monica at a healthy weight is that her Dad sits next to her at the table. He gives quiet reminders to slow down or to remember to chew well. When the other kids are gone, we will probably just fill the plates before bringing them to the table. Since we currently have teenage boys who play sports, it makes sense to bring the serving dishes to the table and let them take seconds or thirds as they need it. Monica eats fast and always wants more. Her Dad stops her when she reaches for seconds. He may have to do it several times in a meal. He never makes a fuss and we don’t let it make the meal into a battle. Tim just keeps reminding her that she doesn’t need to eat what looks good; she needs to eat the right amount to stay healthy. This has been so helpful to me because I am often tired by dinnertime and would not feel like paying attention to what Monica is eating.
Like other concerns we had when Monica was young, our worry about Monica not keeping a healthy shape has been resolved through information gathering, communication, finding strategies and team work.
We knew nothing about Down syndrome when Monica was born. We trusted that if God sent us this baby, He would also help us figure out what to do. Over the years we have received questions and comments about her development. Sometimes we would get overwhelmed realizing there was so much we didn’t know, other times we just dug in and found answers.
One thing people told us was that Monica would plateau – that kids with Down syndrome stop learning after a while. Some people even told us this would happen by the time she was around 10 and she would always be a child. We knew this simply could not be true, but we had no idea how to respond to such things. Now we have the personal experience that shows a person with Down syndrome does not plateau unless they receive no input, just like anyone else. Of course, Monica, like everyone else, is learning every day. We think perhaps the notion has been perpetuated because people stopped teaching, stopped pushing. Just a generation ago, special education programs were completely different and children with Down syndrome weren’t even taught to read. We are so grateful for the help we have received from the county and the school system and the therapists involved in Monica’s life.
Monica has however, learned some things in a different way or in a different order than the developmental checklist at the pediatrician’s office. And some things, particularly abstract ideas, are very hard for her to understand. But she’s not giving up and neither are we. In other posts, we talk about her starting piano lessons at age 18 and she continues to learn new things.
Ever since she was a very little girl Monica has been singing. But for many years her singing was more like open-mouthed humming. She had the tunes but not the words. We would often encourage or correct her to say the words, but we were not too successful. We would hear songs from Sesame Street, songs from church, even the Star-Spangled Banner – but never with words.
At Monica’s IEP meeting in first grade, we talked about reading. Since her development in all areas was slower than the other kids, we hadn’t really been expecting her to be reading yet and we felt we were plugging away towards reading. When the teachers told us they were beginning a sight word program with her, we were initially shocked. We said, “You can’t give up on her… we want her to be able to really read!” Then her special education teacher explained that they weren’t giving up either, but that just like the Signing had been a bridge to speaking, sight words would be a bridge to reading. Our other kids had done sight words too, but along with phonics and decoding, it all went so fast that once they were reading we never gave much thought to sight words. We did know that Monica certainly ‘read’ the golden arches of McDonald’s and that the red Giant Eagle logo meant grocery store to her. The Edmark Sight Word program is a very structured system which her teacher followed rigorously. Monica soaked it in and loved it. She was remarkable in her retention. We soon saw results that amazed us.
She came out of Vacation Bible School the first day bursting with joy. She held a paper with the lyrics to “This Little Light of Mine”. She had been singing that song for years, but never with words. She showed us the paper and said, “Look – it has words!” She began to sing the song with its words. She had learned all those words in her Sight Word program. She was so happy with this new discovery!
The Ear-Nose-Throat doctor was a regular visit for us. We always followed up on suspected ear infections, had ear wax cleaned out, had rounds of antibiotics, even preventatively, had ear tube surgery, and on and on. But there must have still been blocks of time in which the fluid in Monica’s hearing system just kept her from hearing well. Maybe there was also something about the combination of voices and instruments that made it hard for her to hear the words of songs. Now that she could read the words…she could sing the songs!
We soon realized this could be applied further. She always cooperated with bedtime prayers, but never actually said the words to the prayers, she just mumbled along. So we gave her printed prayers. She was so happy to read her prayers! And it wasn’t just reciting words: in the Edmark program, she learned the meaning of the words too and it shed light on so much for her! When you listen to the spoken word, you can’t control the speed it comes at you. When you read, you can control it. You can go the pace you need for understanding. This concept had never occurred to us for ourselves or for our other kids, because it came so smoothly for us. Monica’s knowledge of the words from her sight word program gave her the motivation to decode the words she did not know, because she now realized the point. Her life was enriched by this revelation.
Talking on the phone to grandparents in another state is fun for most kids, but it had always been frustrating for Monica and her grandparents. They had such a hard time understanding each other due to Monica’s difficulty in hearing well and speaking clearly. When Grandpa started writing letters to Monica, she was thrilled! She worked harder than ever in her writing so that she could answer Grandpa. Their relationship blossomed and she would carry his letters around and re-read them.
Areas of speech that are particularly hard for Monica, like putting the s on plurals or possessives, were helped by reading, because she had not really ‘heard’ those s’s consistently. Seeing them in print and learning the difference of the word’s meaning with and without the s through a structured lesson gave her what she did not absorb through hearing them in daily use.
In many areas of Monica’s development, we have been grateful for the professionals in her life who expose us to new ideas like the Edmark program. We have been surprised by Monica’s progress that didn’t follow the same path as other kids but took us on one wonderful adventure after another.
An excerpt from the Christmas letter 2007
As we share this wonderful Christmas season, we are well aware of the many blessings we have been given and how fast time is passing by. Rebecca attended her last Notre Dame Football game as a student, John is getting too big for our laps, and now I can’t even call my mother to tell her I got home safely. So we are savoring this precious time together. We are savoring each bite of Mom Jakubisin’s nut roll shared with Mom and Dad J over a pot of tea. We are treasuring each meal that all the kids are here at the table. We are even delighting in Monica’s singing of the Christmas carols and Gabe’s and Dan’s long legs taking up the whole living room when the boys are playing Monopoly.
Our children have continued to fill our lives with adventure. Monica began 2007 with our first broken bone. She taught us a lot about compassion and cheerfulness through the winter on crutches and through the summer with a palate expander and braces on her teeth.
Gregory is a great brother to Monica and John and has starting doing some babysitting since he took the Red Cross course last spring. It won’t be long before he is also taller than Mary Ellen. John has taken off with his reading and now, like his siblings, often has his nose in a book. He had his First Reconciliation this month and now begins preparation for First Holy Communion in May. He is also playing basketball and helping Monica with her homework.
Monica loves 8th grade and the social events like the pep rallies, bake sales and school dances. Her education continues to challenge us to pay attention and make sure she is getting what she needs, but she loves her teachers and they love her. She has been on Thyroid medication for a few months now and we know it was right because she is so much more alert and involved. She is preparing for Confirmation now and has asked Rebecca to be her sponsor.
A Sample Note from Monica’s aide:
Monica had a great day. She has been telling us about your upcoming trip to Florida and Grandma. She did a great job on her current event. She is quite a star. She was very proud to show everyone her merit award. Mr. K took the class to the Gym and Monica shot 31 baskets. She knew her spelling words today. A + + She was ready!
An essay was published in a Parent Newsletter in February 2007 by a young man who wanted to change the world by eliminating Down syndrome. I’ve been reflecting on the essay and I’d like to share some thoughts in response. The young man was certainly writing from a perspective of compassion. His observation of his sister’s suffering moved him to hunt for a resolution to that suffering.
We all need compassion. In fact, our daughter with Down syndrome has taught us much about compassion. We are wrapping up another adventure in her life where she has evidenced so many times the empathy she feels for others. Monica broke her ankle on Dec 30th. While in the crowded emergency waiting room, she would tell each person called in ahead of her that she hoped they felt better soon and to have a good new year. When the orthopedic assistant was not able to form the temporary cast adequately before it began to harden, he vigorously threw it in the trash with some grumbling. Monica patted him on the arm saying ‘that’s okay, you can try again.” And she praised him when he then did the job well. On the first Sunday she trotted into church with cast and crutches, she couldn’t wait to hit the handicapped pew. She went down the line expressing her solidarity with all the elderly and their various walkers and oxygen tank carts. She has been making get well cards for a student in our school with cancer. We see her repeatedly sympathizing with the sufferings of anyone she meets.
Month after month, actually, year after year, we’ve suffered trying to teach her about coins and telling time. While listening in, first one little brother then eventually the other, learned money, then time. And she knew it. She still couldn’t answer Daddy’s questions right, but they could, and she was happy for them!
While it is not easy to see another suffer, could there be value in suffering? We all must work hard in order to achieve and sometimes the circumstances call for more than just hard work. We have to endure many difficulties throughout life. Would I eliminate a child to prevent their suffering? Hmmm… Almost every night when we are headed to bed, our older son is still doing homework. He is so tired. Perhaps no child should exist who is so smart that the counselor makes him take all those AP and Honors courses causing him this difficult life. And all winter we went to basketball games where our other son was not the best on the team, sometimes he fumbled and missed shots. He suffered some real humiliation at times. Perhaps no child should exist who has low basketball ability. Does our daughter with Down syndrome really have a life that is so much worse than theirs? Each of the siblings at some point went through a phase where they thought they had no friends, except Monica. She has always believed people like her. And always known her family loves her.
This then is our preferred resolution for the suffering. That each child be given a community in which they know they are loved and supported.
During Christmas break, the girls went on a bike ride. Monica turned sharply to go up a curb and had a fall. She got back on the bike after a hug from her sister and rode home. That night we heard her noisily going into the bathroom. When we checked on her, she was crawling down the hall. When asked why, she explained that she could not walk. A visit to the emergency room showed a broken ankle.
Like much of life with Monica, this was a great adventure.
We thought you might find it interesting to know how this experience is different from other kids. Monica has no capacity for worrying about the future. She never had the disappointed realization that she can’t play basketball this year. She is not discouraged about how long it will be before she can ride her bike again. She is simply living the adventure of getting thru her day without putting her foot down. She is figuring out how to turn on the light switch and take a shower and get dressed and get in the van. And it’s all a fascinating fun challenge to her.
At the emergency waiting room, she was looking at all the downtrodden ill or injured around her and making cheerful conversation…asking people ‘how was your Christmas?’ As others would get called in, she would tell them, ‘have a happy new year!’ The TV that day was full of death (James Brown, President Ford and Saddam Hussein). She would tell people, ‘don’t watch that, want to play I Spy?’ Each person who attended her was told, ‘thank you for taking care of me’. She truly brings out the best in people; they just can’t help but hold their head a little higher after she commends them. When it was time for the cast, she was not swayed by the kid in the next bed choosing orange; she was so happy to choose green. She told the orthopedic assistant doing her cast that he did a very nice job of it. When John fell down the other day, she slid off her chair and scooted on her bottom as fast as anyone else on foot, to see if he was alright. If anyone new sees her in the cast, she tells them ‘it’s getting better already’. We all need to see the world a little more the way Monica does – it’s getting better already.
An excerpt from the Christmas Letter 2006
Monica can ride a bike! Tim nearly wore out two pairs of shoes with all the running he did with her, but they did it. You should see the concentration, then the smile, when she sets out. Seventh grade is ups and downs, we’re still trying to figure out middle school academics, and how to improve her speech clarity, but these are our worries, she is happy.
Thanksgiving morning we opened an envelope from our children. Inside was a 25th Anniversary card with a note that they had reserved a cabin for us for the next two nights in Hocking Hills, where we had honeymooned. Did we ever think it would come to this? Remember those years of babies up in the night? Changing diapers? Taking wiggle worms out during Mass? Nodding off while reading spelling words? Oops, I’m still doing that. Well, for those of you still in the throes of these escapades, take heart. Our children planned an incredible celebration for us. The only possible negative was that we really enjoy being with the kids and it was hard to leave them! When we returned, there was a party going on – for us! Tim’s parents had held down the fort in our absence, but they said the kids didn’t need help with the party. They pulled it off themselves. We were so amazed.
A note from Monica’s classroom aide, Sept 27, 2006
Today in Gym our new student had a fainting spell and an ambulance was called. We were playing softball outside, so all the children watched what was going on. When the ambulance came, Monica knelt down on the football field, blessed herself and said a prayer for the boy. How awesome is that?
An excerpt from the Christmas Letter 2005
Monica is in sixth grade and doing very well in reading, spelling and basic math. We are quite delighted with advances in her articulation this year and her teachers are proud of her progress. She is a lot of fun and a social girl.
We thought spring would never come after that big snow on April 24! Monica and the boys had a great winter of snowmen and forts and sledding hills. We had our introduction to Special Olympics this year because the gym teacher submitted a Fairview group to participate in both basketball events and track and field events. Everyone there sure wanted the athletes to have fun.