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!