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.

Blame government, not agencies!

I had an interesting conversation with a parent yesterday. She was asking me about individualized funding and support provided by agencies. Our discussion went something like this....

"I heard that if your child gets 24 hour support through an agency, they take all of their ODSP and you don't get any more Special Services At Home (SSAH)...is that true?" she asked.

I replied by saying, "The reason you don't get anymore SSAH is because that funding is only provided to families whose son or daughter lives at home." "As for taking their ODSP...no agency takes someone's funding, but rather use any kind of funding that the person has for day to day living expenses, which may include ODSP."

"Oh." "Well what about this individualized funding... why do I have to apply for that?" "Why isn't the funding just available?" asked mom.

"You have to apply because the government isn't giving any new funding to agencies...the shift is to provide funding directly to people, so that you can purchase the supports your son or daughter wants or needs" I responded.

"Okay, but I've heard that it may be many many years before my son would get any individualized funding...right?" she asked. "Right." I replied and further explained, "and even when he does get funding, chances are, it's not going to be enough to fulfill all of his support needs." "Then you would be using his individualized funding, SSAH and probably his ODSP to try to drum up enough funding for support."

"Oh, I see." she said.

"It's suggested that your son become connected in his community so that he can have more natural supports and not rely so much on paid support." I continued.

"Ya right" she said, "I can't even get family to make a commitment and everyone's life is busy. I need to know that support is in place for my son so that as I age, it's one less worry for me. And it would be nice if I had some relief now."

"But let's get back to this funding thing" we both said. "Why is there a waiting list? Why do our sons and daughters not get funding automatically?" she asked. "I'm not sure", I said, "to me, it's inhumane and the government continues to take advantage of the good will of families."

"Yes, I agree." she replied. "People should have a choice and there needs to be way more funding provided...to agencies and to families who want it directly."

"I know, it's just not right."

"So do you see?" I asked, "that it's not the agency's fault, it's the government." "There is not enough value placed on our kids and on the people who support them." "If there's a myth that agencies take up too much funding because of bureaucracy and high wages...guess what?" "The majority of their budgets go to pay for direct support and would you work for less than $18 an hour?"

"No way" she replied.

"There must be way more value placed on developmental services, on our children and on the people who support them." I stated.

"No kidding" she said.

"So do you see?" I asked again, "it's not the agency's fault, it the government."

"Absolutely" she said. "I get it now."

"Okay, so what do we do about it?" "How can we get the government to listen?"

"Ha ha ha!" I chuckled. "I'm tired just thinking about it. Let's get through the Holidays and we'll talk in the new year!

Parents want a life too!

Some of my most recent conversations with parents have been about the desire to have a life of their own. They say to me, "I love my child and I definitely want what's best for them, but I want a chance to have some freedom in my life too."

The parents further explain that it's not easy to live every minute of your life based on what is going on with your child. There are sleepless nights, constant worry, never-ending planning and no end in sight. "We certainly understand our parenting responsibility,", they explain, "but day after day, month after month, and year after year, it gets pretty exhausting."

The stress and anxiety increases as parents get older while their energy level and ability to cope seems to decrease. Parents who don't have children with a disability get to relax and retire in their senior years. On the contrary, parents that have a child who has a disability, don't. The responsibility and demands of their life stay the same and often become greater as their child ages too.

"What do we do?" they ask. "I don't want to write a plan," one parent states. "I have a plan, I want to relax." "I want to retire in another country". "I want a relationship with someone." "I want to travel." "I've worked so hard for many years, I want to have some time for me." "Who is going to help me get my life back?"

They agree that their son or daughter should be in control of their life, to make decisions about what they want and not to have anyone stop them from achieving their goals and dreams. They need help from someone other than themselves to make it happen.

In addition, there is nowhere for their son or daughter to live outside of the family home. "It's not right" they say, "to have him live with us for much longer." "What happens when we get sick or when we die?" How fair is it that our son won't know anyone but us?"

Parents have told me that when they express to others that they want a life of their own, they feel judged and looked down upon. They say that people expect them to continue at the same pace up until the day they die.

"That's just not fair" say the parents. "Why is it so wrong to have what everyone else has?" "What's wrong with wanting the chance to have a life too?"

Are services family centred or family directed?

There is a whole lot of information about Family Centered Care or Services. We hear about it in health care and social services and education. It means that the service provided is about the family, or wraps around the person and the family. Fair enough. But who's in the driver's seat?

With family centered care, the family can be included in planning and discussion, but do they really have a say in the matter? I have been to enough meetings with parents to witness an interesting phenomenon. Parents ask for a meeting and have an agenda planned. The meeting begins, and who is doing all the talking? The professional. The parent doesn't get a chance to present the agenda or their concerns, until the end of the meeting.

To me, if a parent requests a meeting, it's only common sense that they direct or Chair the meeting. It's their meeting, isn't it?

Grab on to Bilodeau's inspiration

Does anyone else see the opportunity for awareness in the story of Alexandre Bilodeau, the Winter Olympian who won Canada's first gold medal at this years Games?

After his victory, Bilodeau stated very proudly that his brother, Frederic, had been his inspiration throughout his life and for pursuing his Olympic dream. Celebrating Olympic gold, Frederic was included every step of the way . He was included. He wasn't following along, he wasn't pulled along as some kind of token, and his disability certainly wasn't exploited. He was included. And his inclusion was real. Frederic was respected and considered as any person should be. What a message for the world to see! I wonder if anyone else got it?