World Traveler

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.IMG_2922

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!20160212_182232

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.IMG_2983

After a week of really getting to know her aunt and uncle, we had to leave. 20160215_131319We 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.20160216_142128

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!

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Girls Weekend!

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!

13. Melissa

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.

Men For Others

Monica is so excited that St. Ignatius High School is hosting a Dress Down for Downs Day again this year! The students are donating money to the Upside of Downs to help families that have a family member with Down Syndrome.

St. Ignatius HS Cleveland Dress Down for Downs October 30, 2015

St. Ignatius HS Cleveland Dress Down for Downs October 30, 2015

We started this blog to give encouragement to families who are new to Down Syndrome. It should give hope to see what a great life Monica has!

At St. Ignatius, the students live a motto of Men For Others. Like her brothers, Monica also gives service in many ways. She is also donating to the Upside of Downs. She will contribute one dollar for every person who views her blog the same day St. Ignatius has the Dress Down, October 30th.

Monica is also busily knitting baby hats as part of our St. Angela parish-wide day of service FIAT “Faith In Action Together.” Handmade baby items will be donated to Womankind, a maternal and prenatal care center. She continues to collect tabs from soda cans for Ronald McDonald House.

Thanks for reading!

Baby Hats

Baby Hats

Collecting tabs

Collecting tabs

Gratefulness for a Life

When we say our evening prayers, each person in the family says what they are thankful for that day. We are always thankful for each other and a roof over our heads and food on the table. Sometimes we get bogged down with other concerns and forget how much there is to be happy about.  If you listen to the news items today, it could all seem so sad. Physician-assisted suicide, abortion, challenges to marriage and family, quality of life debating, corruption in public figures are all serious concerns. Listening to Monica’s nighttime gratefulness puts everything where it should be. Yesterday was Monica’s birthday, so she had extra items to be thankful for, but nearly every day her list is this long.

Last night Monica said:

“I am thankful that I was born. I am thankful that I went to Mass. I am thankful that the waitresses sang Happy Birthday and brought me cake. I am thankful that I took muffins to my co-workers. I am thankful that I got to give the blanket to Hillary. I am thankful that Danny came to dinner. I am thankful for the balloons and everyone texting me and calling me and emailing me to say Happy Birthday.”

Cake from the waitresses at special breakfast out

Cake from the waitresses at special breakfast out

Blanket Monica made for her friend's new baby

Blanket Monica made for her friend’s new baby

Birthday dinner at home

Birthday dinner at home

A lot of birthday gifts!

A lot of birthday gifts!

I don’t think anyone in the family receives the kind of attention that Monica receives on her birthday, but it is clearly because it is reciprocal! The rest of us are so much more reserved in our own expressions of kindness. Monica really does remember to send cards and call and text other people, not just for their birthdays, but if they are sick or to express sympathy for a loss or to congratulate for an accomplishment. She is always making gifts and going out of her way to show love to others.

 

Upside of Downs

upsideof downs logoWe 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.IMG_0683

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.

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Last weekend she went to Patterson’s Farm. Monica took a lot of photos, but here are a few she is in.

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October is Down Syndrome Awareness month – fun things ahead! Looking forward to visiting City Hall on Monday, October 12th – Cleveland Down Syndrome Day.

Florida Fun

Monica had a fantastic vacation this summer. We drove to Florida for a family wedding and stayed a week at the beach. All Monica’s siblings, their spouses and their children were together. sibs

One of the best parts of the trip was how Monica was included among the extended family…

At the wedding, she was seated with her peers, not her parents.

IMG_9089  girls

On the dancefloor, she was in the circle of 20 year olds, not the little kids.

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At the condo, she was welcome to visit the condos of the extended family, she didn’t have to stay with Mom and Dad.

IMG_9348  pool MiaZach

They took selfies on the beach.

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She took a turn at the wheel of the pontoon boat.

boat

Who doesn’t love the wind and the waves?

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Take me out to the ball game!

Take me out

 

 

 

at the game

 

A true Clevelander, Monica loves the Cleveland Indians. She had the rare treat of going to a game this weekend. John’s employer generously shared his seats behind home plate including the parking pass and food vouchers. Monica had a blast. She loves the crowds, the noise, the cheering; all the sights and sounds. The fireworks after the game were fantastic.

Her favorite event is the race between ketchup, mustard and onion. After the race, she ran a race of her own, chasing them down for photos!

Monica at ketchup

KethupMustardOnion

 

Monica’s new job and The Disabled Person and Work

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.”