Where Does Time Go??

Yikes! I can't believe I haven't posted anything here since August. Life has a way of getting away from a person, doesn't it!


Kenzie and Ashley are nicely settled in to their new home. There have been a few bumps along the road but overall, nothing we, and they, haven't been able to handle. Most of the things have been house related - a broken down dishwasher that spewed water all over the floor and into the basement was the latest.


Meals continue to be a struggle as there haven't been any meal-bee's planned. I sent out an email to see if some from her circle that had previously expressed an interest would be willing to put into action what they had talked about. Unfortunately, I received no response so I think I will have to work on setting something else up.


To be really honest, the whole "village" thing hasn't been working as well as I had hoped. The diabetes education portion worked great and my friend stepped up and helped immensely. Another friend stepped in and took on the financial end of things. But as for any of the social, physical or spiritual support, it has pretty much been non-existent - none of the stuff people said they would do has come to fruition.


We will be facing a scheduling challenge in the new year as Ashley's courses change at the University. We have been very fortunate that the store where Kenzie works has been quite flexible and I am hoping that continues. Either that, or I am going to have to start putting some screws to the County about providing appropriate transportation so she can have more independence. I don't like the idea that her work schedule gets changed every time Ashley's does just because there is not a proper transportation system here in town.


That is the quick and the dirty update. If you have any questions, please post some in the comment section - maybe that will help me not neglect this blog lol!

Long Weekend Cookfest

Had lots of fun this long weekend. It was our weekend to have Kenzie at our house and we made good use of it. I have found that rather than losing a daughter, I have gained one more - her roommate! 


Although Ashley spent the nights at their house, she also spent a lot of time with us. I was able to borrow some books from her, and she got to meet the rest of my family via an impromptu lunch. I think my brother was suitably impressed with her level of geekiness!


We also managed to get about 10 casseroles made and frozen. We tried out a recipe for Beef and Corn casserole, curried rice and Shepherds pie. That should keep the girls fed for a few days! They are struggling with keeping their grocery bills down and to eat healthy. This cookfest was my attempt to help. That and we will probably be doing Costco trips in the future. Turns out for all Ashley's brilliance, she can't boil water without burning it. I'm making it my mission to strengthen this weakness and make a Betty Crocker out of her. Or, to use a language she may recognize "You will assimilate, resistance is futile."

19 Days

Well, it has been 19 days since the little birdie flew the coop. Or the nest. I have been very pleased with how well things have gone so far. The girls are settling in nicely, (almost) everything has been unpacked and a routine seems to be established.


I think having the girls start living together a couple of months before school starts again was a very good thing. It will give them time to get a routine going, understand each other and develop some comfort.


The only glitch we have encountered so far is one that I am not quite sure how to report on. I want to respect Kenzie's privacy enough that everything is not splashed all over the internet, but I also don't want any parents reading this to think that everything is perfect.


So, for now, I will just say that we have had to do some educating and boundary setting for Kenzie in regards to visitors, boys and roommates. Hmmmmm.... wait a minute..... I guess that isn't so unusual for someone freshly out on their own, is it? 

Who Am I

I asked Kenzie's roommate, Ashley, to put down some of her thoughts on her new living arrangement and how she feels about becoming a supportive roommate. Here they are: 

Name: Ashley


About Me: I am a firefighter, pointe ballet dancer and computer geek


About My Family: I am the oldest of three kids. My brother has many medical conditions including Aspergers and OCD.


Why I Would Do This: 
Reason #1 - I love Kenzie
Reason #2 - I love being involved in improving someone else's life.
Reason #3 - I love the responsibility and knowing that I am challenging myself.

This "job" gives me cheap rent, an amazing roommate and a great support system. I love knowing that people care for both Kenzie and I.


ps: just throwing it out there that this is the best "job" ever! I love Kenzie.

It is Finished.

Well, the deed has been done. She has moved. Boxes are unpacked – for the most part – and bed made. We got groceries for the cupboards and the coffee pot is set up on the counter. She is in her element. And Mum? She has no idea how to identify the feels that are whirling around inside her.

I was over at the house helping put things away. At one point I noticed that Kenzie was getting a bit irritated with me. Apparently, I was being a bit too much of a “Mum” for her comfort. That is when I decided it was time to leave and let them set up the rest of the house themselves. Most of the work had been done, we were just down to the spare parts and trying to figure out where the odds and ends belonged.

I left them with directions on when Kenzie needed to eat next and what time she should get up and have breakfast in the morning. The girls dropped me at home and went off on their merry way.

Since then, I have been feeling this whirling sense of being unsettled. I feel guilty. I feel a bit lost. I don’t think I feel anxious or worried. Just out of sorts.

Guilty

I think I feel guilty because someone else is taking care of Kenzie. It has been my job for a long time and now to have someone who isn’t her father or her brothers being responsible for her seems… imposing somehow. I feel like I have dumped her on someone. I know that isn’t logical, but there it is.

Lost

Eighteen years of taking care of someone takes a lot of energy. Planning their meals, counting carbs, figuring out insulin, planning outings – these things all take time and effort. Now I am at home without her. I know I still have a lot of work to do to get things going, such as explaining her schedule to Ashley, figuring out logistics and everything but right now, in this moment, she isn’t my responsibility. Now what?

Anxious or Worried

It might seem odd to some people, but I rarely feel anxious or worried about Kenzie. At least, not in the general, what happens if, kind of way. I save my worrying for the more tangible things. Somehow, deep down, I have peace knowing she is going to be just fine. I trust Ashley’s judgment and I know Kenzie has a high level of independence.

Something else might surprise you. Even with her room looking clean and bare, I haven’t cried once. At least, not yet.

Oh, and I am trying really hard to refrain for texting them to see what they are doing.

Prom Night

When Kenzie was young, I hung out with a group of Moms who also had kids with down syndrome. We spent a lot of time talking about our hopes and dreams for our children and trying to imagine their future.

Last night was Mackenzie's prom. After all the excitement was over and I was laying in bed  last night, I realized that all my hopes and dreams for this evening had come true.

She experienced all the excitement, celebration and love that every graduate should feel on such an evening. She looked and felt like a princess, she was surrounded by people who were proud of her and celebrated her achievements. There was romance in the air and a protective father (or two) hovering nearby.

The day began with a trip to the salon where she underwent a transformation that all women dream about. Her hair was sprayed, curled, twisted and pinned into her crowning glory. Her makeup was perfect. When she got home and slipped into her dress, shoes and earrings, she was more than ready!

Oh but wait! we almost forgot one thing...

Now we are ready!

A limousine ride had been arranged by one of the parents. This included taking a group of kids down to the legislative grounds for pictures and then a cruise up and down Whyte Avenue for the traditional honking and waving that grads like to do in this town.

Us parents met the graduates at the convention centre for the official start. All the kids looked wonderful - so happy, excited and proud. We parents alternated between looking proud and a bit stunned!

Kenzie couldn't wait for her Dad to show up. There is something in every little girl that seeks her fathers approval and love. Well, he showed up, and she got it. He kept telling her how beautiful she looked and how proud he was of her. Even when she wasn't around he said he loved her dress and that it was absolutely stunning and perfect for her. Every picture of them together shows the pride on his face, and no more so than the first dance when grads danced with their parent.

Of course, dancing with your parent is exciting. Thrilling even. But nothing, and I mean nothing, beats dancing with a young man. A young man your parents said would have to wait for you until you graduated. A young man you are not allowed to date until you are 18. A young man who has been telling you how pretty you are. A young man who makes you feel all twitterpated.


Oh yeah. Dad? Dad Who?

Of course, that was not the last dance of the evening. Not by far. There were fast dances, slow dances, robot dances, group dances and slow dances to fast music. Whether dancing with her beau or with a group of friends, she didn't want to stop.


One of the highlights for me was when the night was almost over. Her friend had left and so had most of the attendees. A few clusters of dancing groups were left on the dance floor. She had come to sit with us and rest. Then, the Village People started to sing YMCA. She popped up from her seat and without a word to us, headed out to the dance floor by herself. We laughed and commented that she didn't need anyone to dance with to have fun. Before she had been out there a moment or two, a guy from one of the groups came over to her and started dancing and showing her how to do the YMCA hand signals. After the dance was over, he bent down, gave her a hug and disappeared. Another song started and a group of girls pulled Kenzie into their circle and she continued dancing.

The ease and self-confidence my daughter displays astounds me. I'm sure that when I was her age, I didn't have it as together as she does!

Year ago, I wished for happiness, acceptance and as normal a life as possible for my beautiful baby girl. Last night I watched a fairytale come to life.

Anxiety Dreams and a Building Bedroom Suite

I had a very odd dream last night. I dreamt the sun exploded, the wind started to blow and it went completely dark. Kenzie was with her Grandpa and they came into the house to find me.  Kenzie then said "Jesus said I have to go now and see the world" and then she very happily took off skipping down the road, onto a dock & got on a ship with some girl. I asked her about her diabetes and she said "don't worry, I have all I need in my backpack". Then I woke up. Hmmmmm... anxiety dream yah think? lol!


Kenzie was over at the house today helping her big brother put together her new bedroom suite. 

She is such a carpenter - check out her hammering skills.....

More Freedom

We just bought Kenzie a new phone. An iPhone no less! I am amazed at how quickly she has picked up how to use it. She can now text, which she couldn't do on her old phone. I hadn't really thought about it before, but the touchscreen is much easier for her to use than the old style cell phone. She can also access her Facebook account and she is busy taking pictures left, right and centre!

As she takes the pictures, we are adding them to the corresponding phone number in her contact list. That way if she happens not to recognize someone's name when they call, she can see their picture.

So, to all of those on Kenzie's Facebook friend list, I apologize if you get a whole lot of posts asking you how you are doing lol!

Graduation!

Well, the first half anyway.

Last weekend Kenzie had her Cap & Gown ceremony. She got to walk across the stage, accept her diploma, get lots of pictures taken, throw her hat up in the air and grin from ear to ear.

She cracked me up when the first thing she said when she got off the stage was "Now I can move out!" I had to remind her she still has a month of classes left and then her prom. Can't wait for the fancy dress, hair and make up at the end of June!!

Families Forward Meeting

The hubby and I noticed an ad in the local paper about a group meeting to discuss issues with transitioning children with disabilities into adulthood. It was organized through the Gateway Association and is called Families Forward.

Wow, the stories they had! It made me feel even more confident that the decisions we have made with regard to Kenzie are the right ones. So many of the families are using Robin Hood (the local special needs service agency) and having all sorts of problems. It just reinforced that I don't want to have a service agency responsible for my daughters care.

What disturbed me the most was the sense of helplessness that was in the room. They felt as if they had no choice but to use Robin Hood and they had already decided what their child would or would not be able to accomplish in life. Among some of them, there was a defeatist attitude that speaks to years of frustrating advocacy for their child.

Having said all of that, I think I will be returning. I hope though that the group is handled a bit differently. It would be great to split the group up into conversation groups of like minded families. Some of the families are still searching for options, some are trying to solve problems and some are gathering information. The ones that were looking to solve problems spent most of the time talking and it painted quite a bleak picture.

One of the highlights of my evening was re-meeting a friend and her daughter. Her daughter is 4 years older than Kenzie but I can tell they could be great friends - they are both very self-possessed, articulate young ladies with a lot of hopes and dreams. I gave the young lady my card and I am hoping that we can connect at some point and introduce the girls. A future roommate perhaps??

Are They Ever Ready?

It is hard to believe it is only 2.5 months until Kenzie moves out. Time is going by so quickly, and before you know it, the snow will be gone. (I can dream, can’t I?)

I’ve been dealing with a wide range of emotions from excitement to fear. There have also been a lot of questions. But the one question that keeps popping up in my mind is – “is she ready?”

The only answer I have been able to come up with is – “I think so”. The fact of the matter is, I have no idea. I don’t even know how to tell. With our other kids, we look at their level of maturity, their ability to cope in the world, whether they can get up, brush their teeth and get themselves to work or school on time. But when you child is cognitively delayed, how can I tell if she is mature enough? Sure, she can get up and brush her teeth and get ready for school, but she relies on us to make sure she knows what bus to catch and what time she has to be there to get on it.

What I mean is, she will never be able to take complete care of herself, so I can’t wait and use that as a gauge. I can only go on my motherly instinct. My gut. And prayer.

Why do I think she is ready to live on her own? Well, here are some things she tells me:

“it’s time I get a life of my own Mum”

“It’s my house and Ashley’s Mum, you can’t come over without our permission”

(this when I informed someone I imagined I would be at her house a fair bit)

“I’m an adult you know, I can make my decisions”

Now, I know, lots of kids can say these types of things, but with Kenzie, I have to give them more weight than usual. By her words she is expressing a desire to be her own woman, to step out and find out who she is – without Mum hovering around. In the absence of other measuring tools, I have to pay attention to her words.

What Does Letting Go Look Like?

I've been doing a lot of thinking lately about what letting go looks like. I have realized that even though I am busy planning for Kenzie to move out, I am still holding on.

What does that look like? well, I find myself planning her move as though I was going to be her long-distance at home parent. As though she was still living at home, but just a ways away. I think about what her day should look like, what she might do, how she should decorate her home and on and on.

It is the little things. It hit me the other day that she is going to have to figure out her bedtime. Seems silly but it was a shocking concept for me. I won't be there to tell her to go to bed and because she will be living on her own, I don't think I have the right to tell her when she should be going to bed... do I?

The problem is, there is no road map for this type of thing. I am trying to approach it the same way I have approached the rest of her life - treat her as if she is normally developing until she shows she needs assistance. I guess in the case of the bedtime, it means letting her figure it out until I hear reports she is falling asleep at work or in class!

I also think this is where I am going to really rely on Ashley. I am going to rely on her to tell me to back off and get my own house! I am going to rely on her to let Kenzie handle things until she thinks she needs to step in. This means Kenzie will make mistakes. She might be tired some days, but that is the only way she will figure things out.

I really wish there was someone I could talk to that has gone through something like this before!

She Might be Ready, But Am I?

As I look back on the last year, my mind spins to think of all the changes I have experienced. My family has went from Kenzie & I with two brothers living away from home, to Kenzie, hubby & I, with three brothers living away from home. I moved out of the home I had lived in for ten years, and started a new, married life.

Now, I am looking at not only having Kenzie move out, but also living as an adult who is NOT actively living with and raising any children. For the first time in 28 years! Let that one sink in for a moment. I have never, in my entire adult life, not been raising a child.

Just hubby and I. Am I ready for this? if not, how do I get ready? How do I know if I am ready? sheesh! I don't think they have written books about my particular circumstances. And I don't know anyone going through anything near to it.

Any parents I know who have kids with down syndrome are not yet planning for them to move away. Am I rushing things? I don't think so, but sometimes I feel these pangs of guilt. The guilt is ridiculous, I know - she is beyond thrilled about moving.

Oh me, oh my. This flu better pass quickly, I have had way too much time to think.

Stuff for the Girls

Well, I think I am going to have to start keeping a list of the things the girls will be needing for their new place.

Dining room table & chairs - we have an extra set for them
Washing machine & dryer - Kenzie's Dad (Jim) is taking care of
Livingroom set - Jim will let us know, he might have something
Bedroom suite
Kitchen stuff - Ashley has most things
Office - Kenzie has a computer & computer trolley
Freezer - we are trying to decide if we should send the small stand up one or the freezer chest
Barstools for the counter - Jim might have something
TV & DVD player - Ashley has

Trying to decide what to do about Kenzie's phone. Not sure if there might not be an easier one to operate than the cell she has now. Wish I could find one with huge keys and very simple operating - just phone and contact list.

What else am I missing??

It Takes a Village to Raise a Child & Help Streetworkers

I had a very interesting conversation with a lady this morning who works with streetworkers and women who have been sexually exploited. She was talking about how, when they are trying to help someone get off the streets, they  to set up a support network or community around them - then she made the comment "You know what they say... it takes a village!"

I started talking with her about the process we have been undergoing with Kenzie and that precipitated a conversation about community. Both of us have noticed that throughout our interactions, we have seen a rising sense of discontent with the way we are, as a society.

With our fast-paced, busy lives we have lost something. We have our privacy, we have our rights closely protected. But somewhere along the line we have lost a sense of community. Of being responsible for each other. Of being our brother's keeper.

Everyone is so concerned about the good old MYOB, that they have abdicated all responsibility. We drive into our our garages without stopping to say hi to our neighbours, we close the door and walk into our attached homes, keep our kids carefully sequestered in fenced and safe backyard, out of the prying eyes of  possible pervs. We don't know the people living next door to us and we certainly don't know the people down the block.

You hear stories of old people dying by themselves and no one noticing for weeks or months because they were not in contact with anyone. People mind their own business when an adult, who appears to be a parent, disciplines a child in public (not that there is anything wrong with that, but you know what I mean lol!) People don't want to get involved. They don't want to butt in. It is none of their business.

Does anyone else remember the sinking sensation in your stomach when you were a teenager and your neighbour saw you out doing something you weren't supposed to be doing? You knew darned well it would get back to your parents - and probably before you got home!

We have lost something. A sense of inter-connectedness. A sense of being responsible for each other. Is it too late to turn back?

What Would You Do? video

Money & Special Needs

Well, it has begun. I am already starting to think about how we are going to balance the whole government benefits and long-term care issues for Kenzie.

The AISH rules seem to be that a recipient can not have $100,000 or they get cut off. If they have over $3,000 and they apply for extra benefits (such as having AISH pay for medic alert services and bracelets) then they will be denied.

Kenzie has four months before she moves out. That means she will probably have about $5,200 in her bank account, without counting her parttime job savings. Not close to $100k, that is for sure, but over the $3,000. This also means we have to make sure if someone has decided to leave her money in their will, that it is put into an RRSP (exempt from the 100k rule from what I can tell) or in some other way protect her from losing her benefits. I believe there is some type of way of wording a will which will put it into a type of trust and not interfere with her AISH.

All of these things we need to try and figure out. The problem is, I am not sure who has the definitive word on this. Do I trust the girl at AISH who didn't know what congenital meant and told us we wouldn't be getting any type of benefits card - even though it came in the mail with her first payment? Is it a lawyer?

Just another bit of figuring out we need to do. In the meantime, my daughter now has more expendable income than I do lol!

Why Haven't I Thought of This in a While?

I was thinking today that there was a time I wanted Kenzie to go to University. For some reason, I haven't that about that dream for a long time. Soooooo..... I started doing some research.

I knew there were programs available in Edmonton at the University of Alberta and at Grant MacEwan. The one at Grant MacEwan is, or was called College Connection. Unfortunately, I can't find any mention of the program after the late 1990s. I sent an email to see if it still exists. Update: the program now exists as Campus Connections.

The University of Alberta has a program called On Campus - it sounds like it would be a good fit for Kenzie. The only problem is their very limited enrollment. I am going to see if I can get a hold of someone tomorrow and see what her chances would be of getting in - or get her on a waiting list.

If she could go to University while working a couple evenings a week, that would be great!

Transportation

Well, PDD will pay 20 cents per KM for her roommate to drive her somewhere. But depending on her schedule, Ashley will probably be at the University when Kenzie needs transportation.

AISH won't pay for cab fare. The cab fare will run a minimum of $200/month, but probably closer to $400/month. She will make $1188 on AISH.

Our town's transportation system for the disabled won't transport people to work.

The local disability society has 17 people on the transportation waiting list and not enough vans. They are not taking any more names.

I feel a cause coming on....

Up-To-Date

Well, unless I have forgotten anything major, I think the story is now up to date. It is two days after the town hall meeting and I am feeling pretty good about things.

There is only one area of concern and that is the scheduling and the transportation. We are hoping Kenzie will be able to go to school part time and work part time. Although she will have already graduated, she is allowed to return to school for at least another year or two. Her job at the Dollarama is going well and they have indicated she can have more hours starting this summer. The issue is how to get her from home to work or from school to work.

For school, she can just take the usual bus she has for the last few years, but if she needs to get to work, it isn't so easy. AISH doesn't pay for cabs and our town doesn't supply a very comprehensive DATS system. They have a disabled adult transportation system that will take her to select areas for doctors appointments, but not transportation for work. We won't know Ashley's schedule for a few months so we have no idea how much she will be able to help.

This is the only major wait and see issue. One thing I am going to try is calling the local agency that supports people with disabilities in group homes. I am not sure if they can help, because we are not technically a client of theirs, but I am going to see what I can find out.

The other up side is that our town will begin a transportation review this summer and I am told this is an issue they are discussing.

Thank you for all your emails and encouragement - I will keep you all posted on how things are going.

Speaking of Pictures

Thought you might enjoy seeing my light reading material courtesy of PDD. This is the binder they give to parents who want to go the supported family management route. Includes the binder, a coil booklet and a DVD as well. And all for just $19.99!! yes, you heard me, for a limited time only... $19.99!!! But they didn't throw in a handy clapper or anything.

The town hall meeting started organizing my mind a bit. The day after we had it, I went out and purchased a zippered daytimer for the girls.

In this daytimer, I entered all the contact information from the people at the meeting. There is also a zippered pouch where Kenzie can put her receipts and space for business cards.

There is also daily and weekly calendars so they can keep track of who needs to be where, when.

I also bought them a coil journal where they can document when they meet to go over how things are going in the house. In this book, they will review things like household chores and share how they are feeling about how things are going. If they have any issues, they will discuss a solution and then document it in the book. This will hopefully be a good accountability tool for the girls, as well as it will help us keep informed on what is going on in the house and areas we can help Kenzie.

Makes me wonder... how DO people who are not naturally organized cope with this?

Some Pics

Kenzie took part in a mission trip to Costa Rica, to work at an orphanage. This pic is of her relaxing on a beach, halfway through our time there.

Some of the friends she made while on the trip to Costa Rica. What great young ladies!

The Day of the Meeting

We held the town hall meeting in our home on Feb. 27, 2011 – three days after Kenzie turned 18. There were a total of 16 people that showed up, including her new roommate to-be, Ashley. I didn’t realize until that weekend that Ashley was quite nervous about meeting “the gang.” I felt so bad for her, sitting so small and quiet on the couch. Luckily, my friends aren’t shy and they were soon chatting away with her.

I started the meeting by getting everyone’s attention and letting them know that I was winging this meeting. I shared the planning document and Kenzie’s goals with them. Then I explained that although it would be great if some of the people could commit to things like taking Kenzie out for physical activity once a week, the bigger picture was creating a circle of support.

A circle of support for Kenzie would mean she has a group of people she can call on to help her. She isn’t relying solely on her mother - after all, I may not be around forever. A circle of support means people who are around enough to speak into her life. A circle of friends who would notice if someone convinced her to apply for a credit card and buy them gifts, or if something was going on in her life that wasn’t quite right. They would have permission to speak into Kenzie’s life or to approach her parents and say “Ummm, I have a bad feeling about this…”

The meeting went very well. Although it was slower to get started because no one was quite sure how things should go, once things got rolling, there was no stopping it.

Some of the decisions reached included:

• An RN friend would teach Ashley about diabetes.
• A female friend would provide physical activity for Kenzie once a week.
• Mum would provide Ashley a list of all the people present and their contact information. Mum would also enter them into Kenzie’s cell phone.
• An accountant friend will handle the financial paperwork for PDD.
• Ashley and Kenzie will keep a communication book where they will review their arrangements on a regular basis.
• Kenzie will give Ashley her receipts and Ashley will track their budget. Later, Ashley will put a spreadsheet on the fridge so Kenzie can start entering herself.
• Kenzie’s brother will mow their lawn.
• Ashley volunteered to shovel.
• Two ladies volunteered to go over to the girls home once every week or two and have a cooking party. They will make and freeze meals while chatting.
• Ashley and Kenzie have already found a young adult church service to attend on a weekly basis.
• A friend from Kelowna has offered a place for Kenzie to stay if she needs to get away.

I am sure there are things we haven't thought of, but we will cross that bridge if we arrive at it. For now, I feel confident that there is support for Kenzie and that I am not in this alone.

A Town Hall Meeting is Born

I’m not sure when or how the idea of a town hall meeting first came to me. I know I was feeling overwhelmed and wondering how I could make sure I covered everything.

I recall thinking “if it takes a village to raise a child, why am I so exhausted?” I think my next thought was “time to call a town hall meeting!” I laughed about it, but as I started to mull it over, I realized I was on to something. We have a lot of wonderful friends and family who love Kenzie and want only the best for her. People have often told me to call them if she needs anything. Of course, I never really took them up on it, after all, we are all busy, right?

But I realized that I had to swallow my pride and for Kenzie’s sake, ask for help. It made it a bit easier to think about it in terms of asking for help for Kenzie, rather than asking for help for myself. Oh pride, what a nasty master you are!!

I got on Facebook and set up an event. I invited all the people I could think of who might be interested in helping Kenzie. People started responding saying they would love to come. That is when I started to panic a bit. What would I say to them? What type of help could I ask them for? What was the plan? Why didn’t I have everything all figured out?

One thing that helped me was completing a portion of the requirements for PDD funding. They need families to write out goals that they have for their child. Maybe this would help guide the discussion at the town hall meeting.

I started out by writing down the number one goal that was on my list – keeping Kenzie safe. Medically safe because of her diabetes, but also physically safe because of her trusting nature.These goals took about 10 minutes to type up. Not because I am a fast thinker, but because I have had 18 years to think about what I want for my daughter, and what a successful life could look like for her.

These are the goals I came up with for Kenzie.

  GOAL                                      HOW                                      MEASUREMENT

Kenzie lives in a safe and healthy environment.	Staff and support network provides monitoring of health needs.	Kenzie maintains a healthy A1C.
	Staff and support network monitors any personal interactions that occur outside of Kenzie’s structured environments.	Kenzie is not taken advantage of in any monetary, emotional or sexual manner.
Kenzie has a physically active and involved lifestyle. (physical needs)	Staff and support network monitors and encourages physical activity and involvement on a weekly basis.	Kenzie engages in physical activity outside of her school environment at least once per week.
Kenzie continues to learn and grow in her independence skills. (mental needs)	Staff and support network assist Kenzie only when it is apparent she is unable to complete tasks on her own.	Kenzie’s confidence in her abilities to successfully manage her life increases.
Kenzie establishes and maintains friendships outside of her family and school environment. (social needs)	Staff and support network encourage and provide Kenzie with opportunities to interact with peers.	Kenzie interacts with peers outside of school.
Kenzie has a variety of people she feels comfortable calling on if she needs someone to talk with. (emotional needs)	Staff and support network remind and encourage Kenzie to express her emotions with safe people. They also provide contact information.	Kenzie feels comfortable calling someone for help if she is upset.
Kenzie is growing in her spiritual walk. (spiritual needs)	Staff and support network encourage participation in daily and weekly spiritual disciplines.	Kenzie participates in daily and weekly spiritual disciplines.

Mum Breathes Deeply

Ok, we have PDD approval for Ashley to be Kenzie’s supportive roommate, I have informed the tenant he has to be out by July 1, 2011, we are awaiting approval of PDD funding, what else did we need to do? Oh yeah – tell Kenzie!

I decided that when I told Kenzie the news, I would videotape her response. I knew she would be excited and I wanted to capture it. To be honest, the video didn’t do justice to her reaction. It didn’t show her legs shaking, or pick up on the quiver in her voice. I thought she was going to come right off her chair.

I am not sure if she was more excited about the possibility of moving out or just that it would be Ashley she would be moving in with! I don’t think she could have been more excited if I had told her Hannah Montana was in the other room. Yes, that excited.

I had fun posting the video to my Facebook account and sharing her reaction with our family and friends. People from all over rejoiced with her.

We had a lot of fun as we started talking about what this would mean for Kenzie. She would need a new bedroom suite, because we would be keeping her room at our house set up. She would be coming to stay with us every second weekend so she needed her bedroom here.

We had a dining room table in the basement that could be moved back to the house, Ashley had a TV and DVD player, we had a computer trolley and my hubby was donating his old computer so Kenzie could stay hooked up to Facebook. Ashley had lots of kitchen stuff, but we would need to track down a used washing machine and dryer… the list kept growing.

The list we were starting on was just about the usual logistics of a teenager moving out. We hadn’t even begun to discuss the bigger issues like how would Kenzie access transportation here in suburbia? How long would it take to train Ashley on Kenzie’s diabetes? How would we handle Kenzie’s budget?

It wasn’t too long before my head was swirling. So many things to think about. In amongst all that we would need to figure out to make sure Kenzie was safe and happy, was a Mum who was reeling.

We really hadn’t thought Kenzie would be looking at moving out for a minimum of a year down the road. This was way ahead of schedule. My baby, my very last child, was leaving home. For the past 28 years, I had a child in the house to raise. Now the last one was flying the nest. I really wasn’t sure how I felt about it. I know I was thrilled and excited for Kenzie. Pleased that things would work so well for Ashley as well.

I remember an evening not long after telling Kenzie when she came into our room one night. She had fallen asleep but woken up for some reason. She came to the door of our room in her pink pajamas, hair tussled, pale face, eyes full of sleep – you parents know the look I am describing. I looked at her and felt a moment of panic. I couldn’t let her move away from her Mum!! She wasn’t ready! She was just a baby! I let her crawl into bed beside me and snuggle, waiting for the feeling to pass.

The Best Laid Plans

Telling our tenant he would have to be out by July 1, 2011 was not something I was looking forward to. He had a six-month lease that would put him to April, but I knew he was probably hoping to stay longer. I don’t blame him – who wants to move after six months?? At the same time, I knew this was the right thing to do.

It was such a perfect situation. The girls could move into the upstairs of a 1200 sq. ft bungalow with hardwood floors, two bedrooms, a den and a double heated garage. Kenzie would feel comfortable because she knows the house, the neighbours, the neighbourhood, and even her old school bus stop. Ashley would have lots of room to study and a nice warm home for the PT Cruiser her parents bought her!  And of course, they had an in with their landlords lol! Her parents could rest knowing their daughter had moved away to a place where she had an Aunt and Uncle with a very vested interest in keeping an eye on things.

From our perspective, we had tenants we could count on for the long-term, our daughter would be living with a peer, in a safe and healthy environment. She would be across town, so not so close I would be in danger of hovering, yet close enough if they needed me.

I have to chuckle when I think about how stressed I was that we couldn’t sell the house back in the summer. My husband was convinced buying our new house was the right thing to do, I was convinced we were committing financial suicide. Why, oh why, were things not falling into place like I had planned? why would that darned house not sell? Hubby said there is a reason why it isn't selling, don't worry so much. Don’t you hate it when husbands are right?

I spent many nights thinking about the situation, but no matter how I looked at it, I couldn’t think of one way the situation might be improved.

Working Out the Details

I didn’t want to talk to Kenzie just yet about our plans. I knew she would be very excited if I told her she might have an opportunity to live with Ashley and I didn’t want to set her up for disappointment if it didn’t work out.

It took a few weeks to make sure that PDD would be ok with the arrangement, that the renters in the house could be out by July 1, and to line up a bunch of other logistical details.

I met with the PDD worker one more time and she gave me a monthly dollar figure of how much she would be asking the PDD board to approve for Kenzie’s roommate. It was more than I had originally thought so I was quite pleased. It would be enough for Ashley to pay her share of the rent, and still have some left over. This was in contrast to her parents having to pay $400/month to have her live in residence. Something neither she nor them were very keen on.

This had all the makings of a win/win situation!

Hubby Prays

Kenzie’s PDD worker suggested that a supportive roommate might be the answer. What this would mean is someone would be paid to live with her, but they could also have another job. Usually, it would mean that this person invited Kenzie to live with her in an existing place. However, because we have a second house, if we could find someone to live there with Kenzie, that might work too.

I went home from the meeting feeling overwhelmed and uncertain. How could we possibly make plans with so little resources? Who would want to take on Kenzie as a roommate while working? Who would want to fit her into their lives because they wanted her, not just because they wanted the extra money?

That night, I explained to my husband everything I had learned about our options. He was much more optimistic than I was, as he is with most things in life. He had become her step-father eight months prior and this was his first experience with the bureaucracy special needs parents face on an ongoing basis. So of course, his first response was that we should just pray about it and see what opportunities presented themselves.

“Yeah, sure,” I thought. I didn’t want to pray about it, I wanted to DO something!

After we had talked it out, we both sat quietly at our respective computers, checking out Cityville and twitter. All of a sudden, I had a flash.

“Hon, isn’t your niece Ashley going to the University here in September?” I asked him.

“Uh, yeah, I think so. My sister said something about looking for a place for her to live.” He responded. Our eyes met across the space between our desks. A smile spread across my face. It took a moment or two but slowly the realization of what he had said sunk in for him. As I am constantly telling him, what he lacks in brains he makes up for in looks lol!

He quickly fired off an email to his sister and before long we were talking excitedly over the phone. There were still a few hurdles to cross. Would PDD give enough money to make it worth Ashley’s while? Would it be a problem that she is related to Kenzie? Was this too much for Ashley to take on, as she would just barely turn 18 before the move. Her Mom reassured me that she was used to taking on a lot of responsibilities and would be perfectly capable.

I didn’t know Ashley very well, but what I had seen had impressed me. A very bright, responsible and mature young lady, she was always kind to Kenzie and included her.

Could this be our answer????

Stretching the Dollars

Talking with the PDD worker was an entirely different experience from the AISH worker. The PDD worker supplied me with so much information, it was overwhelming. A binder explained their “Family Managed Supports.” Basically, I didn’t want an agency calling the shots for my daughter. I want control over who is in her life, where she lives, who she lives with and how her money is spent. That means I will be entering into a contract with the Alberta Government.

They will pay me a certain amount of money. I will then hire staff for Kenzie. I will become their employer and pay them an agreed upon amount of money. There is a whole pile of paperwork that is involved, including signing an agreement and producing monthly and yearly reports.

This sounds great in theory, but of course the amount of money they are willing to give us is not enough for a one-on-one support person. In addition to Down Syndrome, Kenzie also has type 1 diabetes and celiac disease. She needs pretty close monitoring. That means we needed to find a way to have 24hr support on a part-time budget.

I mentioned to the PDD worker that we had a second house. We had been unable to sell it before we bought a new house. We currently had renters occupying it, but they would be gone by April. I suggested that maybe we could find a couple other people with disabilities who might want to be her roommates. We could pool our PDD resources to pay one full time support staff.

The PDD worker looked less than impressed. She said they have had limited success with that scenario. Essentially, what happens is there is one full time support worker but each family is the employer. So what happens if one employer wants to fire the worker but the other doesn’t? or they can’t agree on who to hire? There are also issues with chore allocation etc.

To be honest, this kind of took the wind out of my sails because I thought it would be a great set up. However, the way the government sets things up, it has the potential of being a real nightmare.

In the Beginning...

Wow, where to being? Should I start talking about how Kenzie was born 18 years ago, to two very shocked parents? We had no idea she had Down Syndrome before she was born. After two perfectly healthy boys, we were not prepared to cope with a baby with a heart defect and developmental delays.

Or should I start talking about the dreams I began to have for her as she grew; dreams of a happy, rich life surrounded by people who love and cherish her? Dreams of boyfriends and prom dances, jobs and travelling?

Maybe I should just jump in and talk about how Kenzie is 18 years old this month. She is a twelfth grader and in four months she will be moving away from home. Gulp. My dreams for Kenzie are coming true. She will graduate in a couple of months and on July 1, 2011, she will pack up her belongings and move in with a supportive roommate. Who also happens to be her step-cousin – is that even a proper relational title???

How we got here was - as most parents will relate to - at the speed of sound, on the back of a turtle. Throughout her years in school, we have always insisted that she be included in the regular classroom, with a modified curriculum. We were able to hold onto that until high school. In this high school, they refer to the classroom being included in the building as inclusive. The upside is she still takes her options with the regular school population.

Throughout high school, she has had her share of teenage angst. The main, and really only cause of this angst has been boys. Sigh. To think that when she was a baby I thought she would never experience love. As I look back, I realize that was such a silly notion. She describes her feelings by saying, “when I sleep, I dream about him and I hear love songs in my head.” What woman couldn’t relate? Of course, this also means she has had her share of heartbreak – “why is he DOING this to me!!!” was her lament when she was unceremoniously dumped.

With all the boyfriend drama going on around the house, it is amazing I even had time to think about what was going to happen when she turned 18. But, ever the pragmatic, I started the process months before her birthday.

I applied for AISH (Assured Income for the Severely Handicapped) as well as PDD (Persons with Developmental Disabilities) in 2010. I also started the process of obtaining guardianship and trusteeship over her affairs. What a process!!!!

I found PDD very easy to work with but AISH was a gong-show. Disorganized and frustrating. I applied, they lost the application. I re-applied, they did a screening and then said we had to supply more information. I supplied the information. They said we had to come in to sign the final papers. We battled a snowstorm to make the appointment. While we were there, they said that no, we weren’t signing papers, this was an interview (???).  During this “interview” they asked how long Kenzie had had her congenital heart defect. Unbelievable!

When I called back a few weeks later, I was told a mistake had been made and we shouldn’t have been called into the office – we could now make an appointment to go in and sign the papers. Yikes!

When we went in to sign the papers, they couldn’t tell me what health benefits were covered by AISH, they had no documentation to give me or anything. The worker said she would just need to supply her AISH number at a pharmacy if she wanted prescriptions covered. But she had no idea what was covered. Or how much.

But I digress to vent.