A New Parent Consultant at Ensemble

Hello Everyone!

My name is Michelle DiCarlo and I am the new parent consultant at Ensemble. While I am new to the position as a parent consultant with Ensemble, I have been working as a volunteer with Ensemble for almost two years. I joined their Election Strategy Committee to raise awareness to the challenges people with disabilities and their families face on a daily basis. One of the key messages of the committee has been to dispel the myth that all people with intellectual disabilities are receiving support. Windsor-Essex County has almost 300 children on the waitlist for services and over 400 people waiting to receive additional support. The public needs to be aware of the stresses faced by families raising children who have disabilities. We need public support to address these issues as they are community issues which require community solutions.

My son, Nicholas, has both physical and intellectual disabilities. Nicholas has been my greatest teacher and source of inspiration! My goal for Nicholas is to ensure he has every opportunity to reach his fullest potential in his own way and in his own time. To accomplish this goal, I have come to realize that this is not just an individual or family effort, but a community effort. In order for Nicholas to have the same opportunities as other children, he needs assistance through social support programs. This is a concern shared by many families here in Windsor-Essex County, across Ontario, and throughout Canada.

It is on that note, that I decided to enroll at the University of Windsor to become a social worker so I may offer a greater contribution to this community. One of the core principals of social work is social justice. Inclusion is one of the aspects of social justice as this not only benefits an individual, but an entire community too. So much more can be accomplished when we all work together.

Working together is a core value of Ensemble, after all, the French word "Ensemble" was chosen for its meaning "all together." I sincerely appreciate the opportunity to work at Ensemble as it provides a wonderful learning opportunity since I will be able to work directly with families and Ensemble's extensive community partners.

I look forward to learning from everyone as well as sharing my experiences and knowledge.

Together, we can accomplish our goals.

Eric's inspiration lives on!

I was walking down Yonge Street in Toronto this morning as I made my way uptown to a meeting. As I waited for the light to turn green at a crosswalk, a commotion erupted at where I was headed across the street.

All of a sudden a police car came to an abrupt halt in the intersection, blocking the sidewalk and the curb cut. A fire truck arrived on the scene too. They were tending to a person who was passed out on the sidewalk, right at the intersection!

"Ahh...life in Toronto!" I thought.

Since the situation wasn't a matter of life and death, we were able to cross the street without hesitation. When I got to the police car, I walked around without any problem.

On the other side of the cruiser, there was a lady who was using a wheelchair. Since the police car was blocking the intersection, she was having some difficulty in getting around the car. As I walked passed her, we both shook our heads in disgust.

I took two steps passed her and then quickly turned back. "Just a minute," I thought. "This lady needs help."

When I returned to her spot, she was still having difficulty. The oncoming cars were not slowing down or stopping, or giving her enough room to go around the police car.

I asked her if she needed some help. She said "yes." I explained to her that I had a son who used a wheelchair and that I understood her position. She smiled at me with gratitude. I told her that I would walk with her and give her some room to move.

As soon as the light turned green, we executed our plan. All it took was 3 steps from me to get her across. 3 small steps..that's it. Not too much to ask, is it?

We both looked at the police car and said that he could have pulled ahead, to the side of the road so that he wasn't blocking the crosswalk. But...he didn't think of it. He didn't think of what the barrier that he created for the lady in the wheelchair.

I realized it because I lived it and was happy to help out. I am going to write a letter to the Toronto Police Department about this.

It's up to us who understand what is needed to explain it to others; to raise awareness and to educate them.

I'm doing my part and I hope you will too!

I got a tear in my eye as I said goodbye to the lady. I thought of my son Eric and how all of the things he has taught me, live on. Bless you Eric, and "thanks for making the world a better place."

Ensemble and Community Living Essex County - Celebrating 11 years of partnership!

I didn't really know what I was getting into and I don't think that Community Living Essex County knew either!

It was 11 years ago that myself, parent leader Marilyn Godard and Nancy Wallace-Gero, Executive Director at Community Living Essex County, had the vision to strengthen and enhance the leadership and involvement of families in Essex County. Our initial discussions were very exciting and the passion for working together was invigorating!

That's how Ensemble, a French word that means together, was born!

The expertise of parents was valued and the concept of "parent consultants" was invented. What came after that was a relationship based on true partnership and sharing of expertise. Together we created successful projects like Include Me, which was used as an international training tool. We initiated The Ring of Friendship, stories and artwork from elementary school children about friendship and inclusion.

We developed My Life, My Decisions, a tool for people and families to use before they write their personal plan. Together we have hosted Conferences, workshops and seminars. We have reached beyond our typical scope of support to others in community, like multicultural organizations (Crossing Cultural Barriers) and faith based groups. We have solid relationships with school boards and government funded agencies and have created projects like "Did You Know...", a video for professional development for educators. Next year, we will host the 2nd annual "Windsor Essex Loves Talent Showcase" a fundraising event that engages schools, families, and local business to raise money to support children and youth to be included in community activities and events during the summer months.

Ensemble was a huge influence in convincing Community Living Essex County to learn about planning with Personal Outcomes and the importance of providing all support based on each person's individual goals and dreams. Now, it's the only way support is provided.

A group of 7 moms got together to write a book called "Special Kids, Special Parents" that shares stories, tips and comfort for parents that have children diagnosed with a disability. Our local Pediatric department is consulting us on developing a culture of Family Centered-Care. Our municipality has asked us about accessibility and what it means to parents.

What's the secret to our success? A true commitment to working together, sharing ideas, being honest, being open to learning and most of all, passion, and truly working for the people and families we support.

It has been an awesome journey so far and we are looking forward to many new and exciting adventures to come!

Parenting Tip: Play with The Olympic Spirit!

My 9 year old son asked me this question "what do you have to do to be on a travel baseball team?"

I replied by saying that it usually starts with a real love of the sport. That it takes a good amount of practice and that it's important to want to practice and work hard to develop a skill. I also mentioned that it's really important to enjoy what you're doing and to have fun.

"Oh" he replied. "What does it take to get to the Olympics?" he asked. "Do you have to try out?"

I re-emphasized what I had said earlier about playing on a travel team, about hard work and dedication, having fun, having a love for the sport...and so on. "That's the Olympic Spirit" I said. I went on to explain that it's important to have that spirit even if you're not on a travel team; to try your best and be willing to learn and practice what you learn. It's about putting your heart into it and having a desire to do it.

I told him that it didn't matter to me whether or not he played on a travel team, but the way he played was more important to me.

"Play with the Olympic Spirit!" I said....and the results will come.

Why are programs a bad thing?

Over the course of the past few years, I have heard that offering programs for people who have an intellectual disability is a bad thing.

As a result, government funding to agencies and organizations that support people have not received any new funding for programs. The Government of Ontario has embarked upon a "Transformation of Developmental Services" with an emphasis on personal choice and individualized funding. It's supposed to be a way of responding to people more effectively and respectfully.

Yet with over 20,000 people in the province who have unmet needs and are on a waiting list for supports and services, how responsive is the new approach?

Families are tired. Families are stressed. In their mid-life and senior years, families want to know that support is available for their son or daughter. They don't want to quit their job and they don't want their son or daughter's disability to consume their whole life.

Guess what? The number one question that we are asked by parent that have teens graduating from high school is "What kind of program is available?" I can't tell you how difficult it is for me to repeatedly reply to families "there isn't one". Silence on the other end.

"Well, what am I supposed to do?" they ask. "Well, your son or daughter writes a personal plan and you apply for individualized funding" I reply. "But where are they going to go?" they continue to ask. "I don't know what I'm going to do...where are the programs?"

I try to explain to them that the current philosophy believes that programs are no longer considered to be a good thing. That support agencies no longer receive funding to offer a program for people and that we are moving toward more community based support.

"Well that's absurd" they reply. "I don't want my son or daughter to sit in one room and do piece work, but I certainly need the help of an organization to support my child and to help them have something to do and have a meaningful life." "I can't do this on my own."

"Why are programs such a bad thing?"

I explain that people are healthier and safer in their community and that the more community connections we have, the richer our lives will be; no different for people who have a disability. Parents usually agree. "I get it" they say, "but that's what an agency can do...connect my son with people in the community, and if he is having a challenging day, I know that he has somewhere to go." "I believe in all of that" they say, "but I don't want to quit my job to do it and he has multiple challenges and it's not so easy to support him all day." "And what about my life too?" "I am tired and I need a break."

They further explain that in their mind "a program is something that is offered according to what their son or daughter wants to do and that a few people with a similar interest may hang out together." They are very clear about the fact that they need assistance from an organization.

I empathize with the parent and then encourage them to fill out the application for funding, knowing that they will be placed on a very long waiting list and that it could take years for them to see any funding. I see the stress on their face and I hear the fear in the question "what am I going to do; what is he going to do?"

And then I ask myself "why are programs a bad thing?"

Parent to Parent: An Unspoken Bond

I've said it before and I'll say it again. There is something magical when parents who share a similar circumstance get together.

Ensemble hosted it's first "Parent Empowerment" dinner last night to about 15 parents. I watched as each person arrived and I couldn't help but smile at what I saw. People who had never met immediately began to talk...as if they've known each other for many years.

It's amazing how a similar life experience can bond even complete strangers.

Jackie and I were so pleased to hear the chatter, the laughter and a few tears.

While we did a small workshop, the more important outcome were the relationships established that night and the sharing of ideas that I know will lead to some great things!

Good news helps all of us to feel good

I just spoke with a mom who has been working very hard with her son to find a job. Last year they had started a business together, only to find out that it can be extremely exhausting, not to mention that it wasn't necessarily the best situation for mom and son to spend so much time together.

I encouraged them to get connected to someone who could assist with employment support and help with making community connections. After a couple of months of determination and persistence, a job was found!

I have known this mom and her son for about a year now and when I heard the good news, I felt really good too.

I think there are two messages in this story. The first is to get connected with someone who can help so that you don't have to do it all by yourself. The other is that the more connected we are to our community, the more opportunities there are.

Making Social Connections: Scary, but an important step forward

All people belong together in society, regardless of age, gender, ability, sexual orientation, race, ethnicity, social class and so on. It's about social inclusion for everyone.

It seems so simple. It's common sense. Then why is achieving social inclusion so complex and often difficult to achieve? What's the barrier?

As a parent with a very sick baby I was more concerned with my son's survival than making sure he was connected to his community. When Eric was just under two years old, I was encouraged to enroll him into a community preschool. "Ya right" I thought.

"Who is going to take care of him when he vomits after his meal? Who is going to give him a ventolin treatment for his respiratory illness? Who is going to carry him around for the majority of the day because he is screaming and won't settle down?" Was I thinking about social inclusion at this time in my life? Absolutely not. A small part of me wasn't sure that anyone else could do it, but most of me didn't want to impose such hard work on anyone else. So I did it by myself.

Another half year went by and I began to realize that taking care of my son was an overwhelming and exhausting task. I needed help. One of the ways for me to get a break was to take the step and register Eric in preschool. Given his complex health issues and developmental delay, I believed that a preschool that specialized in caring for children with special needs was the best place for him to go. There, he would be safe and well cared for, and those were my priorities.

Eric had been at the preschool for about 3 or 4 months. He seemed to enjoy it. He was safe. And the staff offered good care. That's what I wanted, wasn't it? One day, when I was picking him up, it dawned on my that while Eric was in good hands, there was a limited number of people who knew him; it was a very specialized environment that focused a lot on disability.

"If I want the rest of the world to get to know Eric and understand what we need, I have to get him out into the real world" I realized.

As soon as I got home I called my contact person at the early intervention agency and I told her that I was ready to try a community-based pre-school! She was excited and very supportive. But I was still very scared. "How are they going to do this" I wondered. But at the same time, I knew that it was and important step to take.

We toured a few child care centres and on two occasions, I didn't have a good feeling. They didn't seem to want Eric at their school. Then I visited Storybook Early Learning Centre. The Director and the staff were very warm and welcoming and their attitude was very positive. They reflected a manner of "we can do this, no problem" and I knew that they would do whatever it took to ensure that Eric had a positive experience and that we could entrust them into their hands. Eric had new friends and I would get the pictures to prove it! he always had a smile on his face.

I found out later that his teacher was so frightened at the beginning, she wanted to make sure that she did a "good job". Her Director was very supportive which gave her the confidence to learn and grow. And that she did. She said that her experience with Eric helped her to realize that she could still learn new things and that she had what it took to teach a child with complex disabilities.

I became a parent who didn't see the possibilities of inclusion to a parent who would settle for nothing less. I learned that it can be done.

This story is important because it explains a couple of perspectives with regard to social inclusion. Parents are frightened. The world doesn't always appear to be warm and welcoming. There are still a lot of people who don't want to bother to include someone who has a disability. But the story also tells the barriers, if we look hard enough, there are people who are willing to include everyone and offer a positive opportunity for all. It's up to us to keep digging.

The story also reflects the benefits of social inclusion. Not only does the person benefit, but society does too. We learn about our own strengths and that what may seem impossible at first, is actually very much a possibility if we simply try.

Eric was very young in this story and people say that it can be easier to offer social inclusion to a child. Yes, but we have to start somewhere. As parents its important that we keep digging and as a society it's crucial that we respond.

I had such a good experience and yet I still ask the question "why is achieving social inclusion so difficult and complex?" It shouldn't be, if on one side, we simply ask, and on the other side, we say, "I will give it a try."

Should I say something?

A woman had heart surgery last week. It was an extensive, 8 hour operation. As part of her recovery, she was sedated for 24 hours afterward. This lady is a pleasant lady with a very easy going and friendly personality.

The following day, as she began to wake up and become more aware, she realized that she was going to be dependent upon people to take care of her for a couple of days. Fair enough, she just had major surgery.

From what I have witnessed and from what I am told, you're really not thinking clearly right after surgery. You do your best, but for a day or two, you're just trying to recover.

This lady had asked the nurse for something and the nurse's initial response was "you know, please and thank you go a long way around here."

"What?" thought the lady. " I didn't mean to be rude, I didn't even think about saying please....it took all of my energy just to get the words out."

She shared the story with her daughter who immediately went to the nurse in charge and told her about what happened. She was a little reluctant and thought "should I say something?" Instinct told her that she should and she was happy that she did.

I told her that it was very important that she say something. People who work in hospitals from day to day sometimes forget that this is a new and often frightening experience for patients. Their sensitivity for the patient's situation becomes non-existent because as a professional, they go though it every day. The only way that they will continue to understand a patient's point of view is if we share it.

Many people are reluctant to speak up for themselves or express their feelings, because they think that as a result, they will get mistreated, instead of better treatment. "It's all in the approach" I said. If you come at them in a confrontational manner, then yes, they may get offended. But...if you start by saying "I just wanted to share something with you and I hope you will understand my point of view...." the person on the other end will tend to listen and not get taken aback.

"If we don't express how we feel, how will the customer service ever improve?"

A "disability" experience...interesting

My friend shared an interesting story with me over the Holidays about an interesting experience.

I thought it was worth sharing....

My friend had her braces adjusted earlier in the week. By the end of the week she was experiencing a great deal of pain and had to go back to the dentist. In order to treat her issue, he had to freeze one side of her cheek and tongue. She accepted that...anything to make the pain go away.

After her dentist appointment she was making a donation to one of our local social service organizations. Parking is not plentiful at this place and she knew that she would only be a couple of minutes, so she parked the car by the curb, put on her hazards and got out of the car, ready to dash into the building.

There were two men having a conversation in the parking lot when she arrived. They must have been watching her every move, for when she got out of the car, they immediately yelled "you can't park there!"

My friend, wanting to explain that she would only be there for a few minutes began to speak.

Remember the freezing? Well, when she started to talk, her words were a bit slurred and she couldn't quite get the words out. All of a sudden, the men became a little kinder and changed their approach.

"Oh my" my friend thought, "they're being nice to me because they think I have a disability!" She wasn't impressed.

It was a story that she wanted to share with me. I said " let's look on the bright side, at least they were treating you in a kind manner!" We had a chuckle but continued to talk a bit more about it.

In my friend's opinion, being nice to someone just because they have a disability is not "cool". I agreed.

She said that it showed patronizing and phony behaviour. I agreed.

"It shouldn't have mattered whether I had a disability or not" she said. I agreed.

"Is this how people feel?" "I'm sure that they can sense that some people are nice to them only because they have a disability." I agreed.

"How unfair and how demeaning" we both said.

After that my friend said that she understood why people fight for their rights and for self-determination. It's that kind of attitude from others that really pis....es you off!

I agreed.