Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, August 17, 2009

The future

Lots of people ask me about Angela's future. None of us can predict the future of our kids, but with our typical kids, we pretty much assume that by a certain age they'll be out on their own, or at least working on finding their way to a good future.

But when you have a child with a disability, such as Down syndrome, you just have to throw all your assumptions out the window. When they're toddlers, it's really hard to tell. But by the time they start school, you can start to see glimpses of the future. It would be fun to assume all kids with DS will live independently. But not all do. Fortunately, where we are, there is a variety of living programs available for adults who have disabilities, accommodating a wide range of functioning levels. Even so, in the back of my head I just want to build my OWN facility, so I can choose all the residents and staff myself, and, for the sake of convenience, I would have it located in our back yard. You know, so I know EVERYTHING that's going on!

Angela is 13 now. She just had her birthday in June and and is already talking about next year's birthday. There are a couple of job training programs in our area, and I think they can start in them at the age of 14. (or maybe it's 15, I'm not sure yet. LOL) Angela has made it clear that she would like to be a hostess at Applebees, and a nurse at one of the local children's hospitals. So, I guess I don't need to worry about that since she has it all figured out.

As for where she's going to live when she grows up, seriously, I've had blue prints in my head for about 7 years now, of an independent living facility. I just need to find the million dollars to build it. And there is that small thing about licensing. But I'll get it all worked out (in my head) I'm sure!

In reality though, I have a pretty good idea of what Angela will be capable of as an adult. She's learning to cook now, and is learning to do lots of things on her own that a year ago she was nowhere near ready to do. I can see her in a semi-independent situation. Where maybe she gets herself up and out the door on her own in the morning. Uses some type of public transportation or transportation for those with disabilities to get to her job. (remember, she'll be working at Applebees or the hospital.) She might have someone around to make sure she takes her meds on time, or to help cook a more elaborate meal. Someone to organize events with friends, or to keep her involved in the the community. Dean and I will be able to travel in our retirement, because Angela will be in her own living situation. We will be empty nesters, just like everyone else. Angela's waiver rolls over to adult services when she reaches that age. (well, that's how it works right NOW, but who knows with some of the proposed healthcare changes!!!) As long as she's a resident of the state she is eligible for those services. To me, that means if she's here in MN 7 months out of the year she's a "resident". So, if Dean and I wanted to winter in Florida, we could do that and she could come along???? Or maybe she'd just come down for one week a month or something so she wouldn't loose her slot in some program? I don't know exactly how it would work, but it's what I'm envisioning. Granted, we'd have a lot of time to get used to whatever her living situation is. But we're already working on training her how to be home alone, and how to handle certain situations. 

A couple weeks ago Angela and I were driving to her softball came, and Angela, in very quiet/concerned voice, "Mom?"

"Yes?"

A: "I'm going to a new house soon."

M: "Really? Where's your new house?"

A: "Far away."

M: "Hmmmm Wow, I didn't know that. Who's going to be at your new house?"

A: "Me and Adam and I."

M: "Does Adam's mom know about this? Cuz Adam is only 10. Where will Adam sleep?"

A: "Adam have his own bedroom, and I have my own bedroom."

M: "Well, that's good. That's important that boys and girls have their own bedrooms."

It was quiet in the car for quite a while as Angela pondered her new living arrangements.

A: "Mom?"

M: "Yes Angela."

A: "I'm not see you anymore?"

M: "Why aren't you seeing me anymore?"

A: "Because I'm at my new house. Far away. Can't see you anymore."

I quickly realized that in Angela's world, all her brothers have moved away and she only sees them occasionally, and I don't think they realize this breaks her heart. And in her eyes, when you grow up and move away, you don't see your mom anymore.

M:  "Oh Angela. When you get your new house, I will see you all the time! You might live in your own house, but it won't be far away. I will always be close by. And you'll always be able to call whenever you want. And we will go out to eat together, and do all the fun things together that we do now." 

So, I guess I don't need to worry about where Angela will live, because she has it all figured out!


5 comments:

lovey said...

Hi..I have worked with disabled young adults for a long time. I think that at age 14, they start a "transition" plan each year to get them ready to work. At 18, then they are funded to work through vocational rehabilitation through your state.

I now live in Michigan, but in California, there were great facilities for independent living. Most of the teenagers I worked with eventually went to Muirfield Apartments in Rohnert Park, CA. These apartments are for adult developmentally disabled, and they each have their own apartment (I think there are 25 apartments). There is a staff person on-duty at all times in the building to help them with general apartment living problems. In addition, they individually might get in-home services in their apartments and have a person come to meet their medical needs.

There is also a good program, North Bay Industries, there in Rohnert Park, CA. They have "enclaves" in area businesses, as well as a sheltered workshop. The "enclaves" are in a nursery, a sticker factory (Mrs. Grossmans), and a glass factory. They also do individual placements, such as in retail stores and restaurants (like Applebees!). The sheltered workshop is not "busy work" either..they sew flags, assembly work for computer companies, etc. Most of the workers take public transportation to their work sites.

Anyways, these are the best programs I have seen. The Midwest needs to catch up. But maybe you could look into and talk to these people in California, in making plans. The time to work for Angela will be here before you know it!!!

Leah said...

Thanks Lovey! It sounds like you have great services there. Yes, I'm very familiar with how the transition system works here. (I've worked in in myself as a job coach for several years before angela was born.) We have A LOT of programs here, and I know a lot of adults who are in them. I guess the main focus of my post was that sometimes we worry when we really don't need to worry. Like putting the cart before the horse. KWIM?

JennyH said...

Sounds like she does have it all worked out! Go Angela!

Andy and Ellen Stumbo said...

Angela is one of the most inspiring people I know, because she is such a wonderful example and someday role model for Nichole.

I do have to say, when it comes to independent living, that we will beg if we have to for Nichole to live with us forever! It was the one thing that was the hardest to deal with when she was a baby, and now we want her with us forever! Not because we are scared, but because we just like her so much :)

datri said...

It's crazy, having to plan for your child's future so far in advance. The biggest reason I wanted Kayla to get into the private special education school is because they have programs that continue into adulthood, including residential programs. And since she'll already be IN the program, she'll have a good chance to get into one of their world class adult programs. How nuts to be thinking about this when your kid is FIVE!