Our Journey as a Family

su and mady

Madeleine and Susan

I’m sure that those of you who are parents would agree with me when I say, “I would do just about anything for the sake of my children, anything & everything to make sure they are safe , to provide opportunities for them, to nurture & encourage them to be the best they can be, to take care of them.”

I think it’s a life-long commitment and it doesn’t stop when they are no longer children and are big enough to make their own lunch, do their own laundry, get a job, and drive a car or whatever defines grown up.

Almost 30 years ago, Ted & I moved across the country from Toronto to Tsawwassen.  One of the reasons, was we didn’t want our children to take a school bus to school.   Our so-called neighbourhood school was being closed.   How could I put a small, scared 6 year old,  an odd little duck,  as one specialist described her, a child with no definitive diagnosis, but with definite speech & language difficulties, odd behaviour and anxiety, how could I put her alone on a bus just to get to school?  The thought really bothered us, and then, what would happen when her baby sister needed to start school?

So when an opportunity came up for a career move, we did just that: moved across the country to be close to my sister and her young family.  She assured me there were lots of schools in Tsawwassen, no need for school buses. She found a good doctor, good day care, and the weather was better too.  Seemed like a good idea to us and it also meant I could be a stay-at-home Mom or perhaps just work part-time.

Our children called Tsawwassen home for almost 20 years. They they went to the local schools and participated in the usual activities of childhood, including Brownies & Guides, sports, music & dance lessons & Sunday school. During that time, when she was 11 years old, after many tests & specialist appointments, we finally received a diagnosis that Madeleine was on the Autism spectrum, high functioning, but on the spectrum and with a mild developmental disability. So now we knew what we were dealing with and started making plans to try and get some extra help.  The school system at the time was good and we enjoyed working with several good Special Education Assistants and the Resource Room teachers at South Delta Secondary School (SDSS).

However, we didn’t fare so well with help from the government. Autism funding didn’t exist back then. We learned about wait lists and falling through the cracks and not meeting the criteria for limited services.

Madeleine attended some specialized training courses at Kwantlen College and Vancouver Community College but the work placements didn’t result in real jobs at the end of the program so her future looked bleak.

I’m sure I don’t have to tell you about the black hole there is at the end of the road when children age out of the children’s system, turn 19 and become adults.  Out of school meant out of luck.  If we thought that there were limited opportunities for our daughter as a teenager, there were even fewer as an adult.  If it wasn’t for Special Olympics, and a small Social skills group offered through Delta Continuing Education, that met twice a month, she would have had very little to do in the way of recreation.

Delta Community Living Society accepted Madeleine and a friend for a summer recreational program but turned them away in the fall, saying they didn’t have the capacity to accept new clients living at home. Basically, they had their hands full with their current clients, people they had been working with for years providing recreational, employment & housing services.  There were services and programmes for others with more severe disabilities or limitations but not for our odd little duck.

From a personal and professional point of view, this was very disappointing, to put it mildly.   By now I was working part-time with children and youth with special needs and helping their families connect with available services and programmes offered by other agencies and associations:  Zajac Ranch, Easter Seals, Special Olympics, Semiahmoo House.

Semiahmoo House seemed to have lots going on for youth and adults, a full range of services and programs, year round, day programs, Rec and Leisure, including holiday trips, employment services and training, housing.

When we heard that Semiahmoo House was hosting meetings to talk about housing options for adults with  developmental disabilities it sounded like an opportunity too good to pass up.

Attending meetings and joining in discussions often raises questions and many of us expressed our worries and apprehension about the future.   As ageing parents, we knew we couldn’t and shouldn’t have our adult children living with us forever but where could they live if they didn’t need the full time services of a group home or if home share wasn’t available, or if there was no basement suite?  What were the options  ?

I remember going to one of the early meetings at Semiahmoo House, while we were still living in Delta.  The parents met in one room and our adult children went off to another room.   The goal for both groups was to brainstorm ideas about housing, what was important, what was necessary, what should be included, how to make the dream of living in their own place come true.    When the two groups reconvened to compare answers, it was remarkable that many of the ideas were the same.

  • People want to live in their own neighbourhood, be close to transit, shopping, recreational places, job opportunities, close to family and friends
  • They want to be safe and feel secure
  • They need private and personal space
  • Help and support should be available as necessary to help maintain a semi-independent way of living

As parents we are sometimes regarded as experts on our children and rightly so; we know them intimately… we’ve lived with them forever.  However sometimes it is important to step back and listen to our children, to honour their own ideas and dreams.  I remember asking Madeleine where she wanted to live and she said, “in an apartment above the garage”.   Great answer, but at the time, we didn’t have a garage.  Was this her way of saying, “I want my own space; I’m ready to go, but not too far away.”  We knew the time was coming to make some plans for the future.

So, seven years ago, with one of our children, Emily, out the door and on her own, we decided to move from Delta to Surrey in order to obtain the kind of housing we needed for our family.  There were very few options available in Tsawwassen as we considered downsizing whereas Surrey, specifically south Surrey/White Rock, had lots of townhouses and condos to choose from in good neighbourhoods, with easy access to shopping and services and good transit too.  And of course moving to South Surrey meant Madeleine would be able to check out the amazing programs and services at Semiahmoo House.

We weren’t the first family to move away and I’m sure we won’t be the last.

We found a nice townhouse, thanks to our good realtor, and immediately got involved at Semiahmoo House.  Madeleine joined Dance and Musical Theatre classes, went on some amazing holiday trips, received some job coaching and with their help, landed her first part-time job.   We continued to participate in the meetings about the exciting new apartment project that was now in the planning stages.

We knew we were one of about 100 families who were seriously interested in the 20 spots available. So, it felt almost like a competition, getting up at dawn to stand in line for Kindergarten registration or something.    Detailed personal support plans were developed after consultations and meetings with the potential tenant and the family as well as reviewing information and references from other family members and friends.  And because Semiahmoo House follows a Person Centred practice, Madeleine’s concerns and interests were always considered important.

We spent two years alternating between hope and worry.

But, ultimately we received the good news, she was selected for an apartment and she could choose the size of unit and the location in the building.   All we had to do now was watch and wait as the shovels hit the dirt and the building grew from floor plans and design drawings to brick and mortar.  Her brand new studio apartment was going to be lovely and much nicer than the one her sister has in the West End.

We knew if Madeleine was chosen to live in one of the supported units at Chorus, we would have to give up our hard fought and limited CLBC respite/life skills funding.  The funds would be pooled to provide support as needed for the residents in the apartment.  I know Madeleine misses the outings she enjoyed with her respite workers but what is in place now for her and the other residents,  in the form of  a couple of life skills sessions every week and daily check ins, is a good trade off and, for the most part, works out well.

At first, I admit, we worried a bit about isolation and how she would cope living alone.  She is not one to initiate activities but will often join in if asked.   I mean being alone and enjoying your own company is one thing, but being lonely is not good.  So how would this living on your own work out?

There is a nice amenities or common Room in the Chorus apartment building and for the first year, many of the Semiahmoo House supported residents held their birthday parties there and invited each other.  It seemed like every month there was a party going on.  Special activities were planned too by staff or family members, such as craft nights and movie nights so the social calendar was busy.   As the residents become comfortable and established, they are now being encouraged to take a more active role in planning these activities.

To try and encourage a sense of community, and getting to know others in the building, some events have been held for all the residents:  coffee mornings, Barbecues, etc. Starting this fall, there will be some low key, informal music events in the common room.   There is a nice mix of people in the building from young families with children to seniors and everyone in between.  And although, as in all rental buildings, people come and go, there are some really nice people who live there.  Madeleine has recognized a couple of people who go to our church and we avoided a potential disaster at the passport office when one of the agents at the office was able to finalize the process, without expecting us to make an extra return trip when she saw Madeleine’s photo and said, “Oh that’s Ok , she lives in my building, just down the hall.”    Being recognized and accepted in your neighbourhood is a good thing.

We have always been very much aware that Chorus is a unique and innovative model of housing and we have explained to our sons and daughters how important this place is and how everyone has to work together to make sure it is a successful role model.  So we have encouraged them to open their apartments for tours, to talk to the press, to make presentations at board meetings and all candidates meetings, to spread the word about the benefits of living at Chorus.

As parents, we have an informal network of support for each other and have met a few times on a more formal basis to discuss various issues.   Some of us worked very hard to try and obtain rental subsidies.  Although we were not successful through BC Housing (they’re a tough nut to crack!), we did have the support of our local MLA Gordie Hogg and eventually secured some special funding for 10 years from the province which goes directly to Semiahmoo House and which they in turn, use to lower the rents of the 20 tenants they support.

Hopefully over the next few years, the provincial government will realize the need for more affordable rental housing and will come up with some reasonable solutions.  However I’m sure there will always be a need for parents, self -advocates and social service agencies to be involved to ensure that something really happens.

So how are things now?  It’s been 2 years since Madeleine has moved into her own apartment.  She has more self-confidence and proudly says she loves her apartment.  Speaking with some of the other Moms, I think the adjustment was probably harder for us, than for our all–of-a-sudden, grown up children.

We still live in the same neighbourhood, just a block away.   Now I don’t necessarily recommend being quite so close. It’s handy and convenient, maybe a little too close sometimes.   But she’s not over at our house all the time.  Sometimes when we ask if she wants to come home with us after church for lunch, she says no, she’s fine.  And on the other hand, when she is planning to go out, she will often call and ask if I need anything and then she is happy to pick it up and bring it over. So, she’s a good neighbour.

We talk or message each other almost daily and see her at least a couple of times a week.  I’m still a carpool Mom and coach for Special Olympics. So, some things never change.

Madeleine acknowledges that she although there are many things she can do on her own and she enjoys her independence, she will always  need some support. For example, making medical appointments and advice for budgeting and making significant financial decisions.

Recently,   some of our friends have commented on how much more relaxed Ted and I are, now that we are both retired.   Although we still enjoy a family holiday with both our girls, every year, we now can go away on our own as a couple and do more of what we want to do.  Our menu is more varied too. We can cook fish and eat other vegetables besides  carrots!   Yes, we have more free time, but it’s more than that. We are able to enjoy our free time, because we are relieved.

We feel relieved because our daughter is living in a good place. She is happy and safe with built-in support, 24/7 if necessary and we know this can be a long term arrangement. There is balance between alone and quiet time and organized activities with others in the building and outside community.  She is happy to live in a good neighbourhood in a smoke free, pet-friendly building with other tenants selected by a property manager who understands the philosophy of an inclusive community.

As I said in the beginning, as parents we will do almost anything in the world for our children, but maybe sometimes, the best thing we can do is nothing and let them do it themselves.

As her parents, we will continue to live in the neighbourhood and be available and involved as long as possible.  It’s been almost 7 years since our move and we still keep in touch with a few good Delta friends. Ted and I are happy to call Surrey home and so is Madeleine but you don’t have to take my word for it… She’s going to tell you herself.

Susan Wieczorek

Click here for Madeleine’s story.

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s