We held a meeting at our home last night for an organization in which we are involved. Children were running around or playing with toys while the adults began the meeting. Monica sat with us when we opened with prayer … Continue reading
Monica has been working in the kitchen of a nursing home since February. Technically she is not employed by the nursing home because she is in a Community Work Experience program through an agency that provides job training for people … Continue reading
Monday morning chores.
No dust can settle on this girl!
Wake up. Get dressed in work uniform. Eat breakfast. Brush teeth. Put lunch in backpack.
Empty and load dishwasher.
Gather laundry from hampers in the bedrooms. Take to laundry room and start a load. Whites first.
Take the city-issued garbage and recycling bins to the curb.
Practice piano – 10 minutes.
While watching for your ride, practice Italian lessons with Duolingo on the iPad.
When van comes, head out the door. Greetings to work friends! Off to work.
And it’s only 7:45 a.m.!
At any gathering, you will catch Monica taking the tabs off soda cans before putting them in the recycling bin. She is always on the lookout! Last week, we took her recent collection to Ronald McDonald House for their Pull … Continue reading
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!
Our family has decided to learn Italian. We purchased the Rosetta Stone Italian because it can keep track of multiple users on multiple computers. We liked the setup of the lessons, the progress reports and the variety of exercises used in teaching a language. We knew that learning a foreign language is probably beyond Monica’s ability, but she understood the family had a new goal and project. She wanted to participate, but there was no way she could navigate the software since they jump right into Italian.
Then Tim had a great idea. He purchased the Rosetta Stone English for Monica. We thought that if she could figure out how the software worked, how to go from screen to screen, etc., that maybe then she could start the Italian. We wanted to capitalize on her interest and enthusiasm.
It is very challenging for her, but she does it. She independently signs on, hooks up the headphones and microphone, and gets right to the day’s lesson. We had no idea how great it would be as a speech therapy tool!
We have always taken Monica to private speech therapy in addition to what she had at school because we know communication is such an important life issue. The schools are always limited in what they can provide and we felt as long as we could find a way to do it, that it would help her in life. There are several different aspects of speech therapy. They may be working on sound production, actually making a ‘b’ sound like a ‘b’, or there is also language development, working on saying ‘I went to the store’ instead of ‘I go store’. There is also communication work, having a conversation, listening and taking turns, understanding the difference between a question and a statement. When a person has hearing difficulties, it affects all these. If you never heard the ‘s’ sound at the end of words, it would be hard to pick up on the differences between singular/plural and possessives.
We had no idea that the Rosetta Stone language system would support all these aspects in such a challenging and motivating way for Monica.
There are many different games for the Ipad and flashcards, games and worksheets that supported Monica’s speech development. Many of these are very kid-friendly and fun. When Monica sat down to do the Rosetta Stone, somehow she knew it was for adults and she liked that. It stretches her for listening skills, pronunciation, sentence building and vocabulary. She struggles sometimes when she has to repeat a word or phrase many times before it will let her go on. But she perseveres.
We no longer really think about getting her to move on to Italian, but we are thrilled at how Rosetta Stone has turned into a speech therapy tool for Monica.
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!”
Monica has been at her new job for over 6 months now and loves it every day. In July, she was recognized for perfect attendance again!
Monica is working for an agency that does job training and placement and provides services for adults with disabilities. The agency made an agreement with a long term care facility to provide a group of workers to help the staff with the needs of the residents. There are six adults on Monica’s team and they do a variety of jobs at the facility. Most of the adults are similar in ability to Monica, so she truly has peers to work with. But just like inclusion when they were in school, they are all working alongside the regular employees, sharing the regular employee lunch room and interacting with all the ‘regular’ residents of the facility. So we have the benefits of friends and the benefits of having ‘typically developed’ examples of work behavior.
On an average day, Monica will help clear away the breakfast dishes after the residents finish and prepare the dining room for lunch. She will help with some food prep activities in the kitchen such as pouring small glasses of juice and putting them on trays in the refrigerator or dishing up fruit or putting cookies in baggies. She might then go with a partner to the resident rooms to ask if they would like to join the morning activity. They may help to escort the residents to the activity. If the day’s activity is exercise time or singing time, she may join the activity. On Tuesdays, some of the residents have knitting circle, so Monica joins them. Monica’s group may empty trashcans, or restock some supplies in the rooms. They might fold towels in the laundry. They might help with shredding or collating in the office. They will also clean up after lunch. The services of Monica’s group allow the facility staff to focus more individually on the resident’s needs and the residents enjoy the interaction with the members of Monica’s team. It’s a win for everyone.
Monica works Monday through Friday, 8:30-1:30. The agency provides a bus that picks her up from our home and takes her to work and brings her home in the afternoon. Monica gets up happy every day and looks forward to another day of work. She proudly takes care of her uniform. She comes home tired and satisfied.
We are all so happy with the new situation. She is working and giving service. She has a regular routine. She still has family time. She can pursue other activities, like exercise class now. The agency she is working for has helped her set goals and meet them.
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.