A Day That Should Go Down in History

One of the issues we've had with Beth is her lack of speech. She can talk, she just chooses not to. I expect it's because she knows people have a hard time understanding her. She's gotten better over the years but she still chooses when and where she'll talk.

We had her annual assessment last week and she barely spoke. Trevor asked so many questions about her health and her job and her boyfriend. She hardly said a word.

I got off work on Monday and took her to the doctor. The doctor asked her about Special Olympics and Nick and exercising and music. She looked at her knees for most of the appointment and maybe said 10 words the entire time.

Then we went to the grocery store. As soon as we got out of the car:

"I'm glad I have my hat! It's windy!"
"Imma have some hot tea when we get home."
"Imma take my own cart."
"I don't want apples. Dad like that kind."
"I have licorice and chocolate." (I made her put the chocolate back.)
"I'm not getting cookies. No way!"
"I don't know if I wanna get this. Maybe I wait."
And on and on and on.

I try to respond every time she says something but after more than an hour, I was drained! I will admit I have to look at her so I can read her lips and it makes having a conversation - while you're doing something else - so difficult.

We got to the register and she said she wanted me to go first. As I'm unloading my stuff, she's still talking and since I have to look at her I unload one thing then have to look at her and ask her to repeat what she just said. Unload a little, then ask her to repeat. Unload and ask. Again and again.

Oh my goodness, I was this close to telling her to stop talking! Beth, just... stop! Enough for a while! I didn't of course, but man, I never thought I'd see the day. 

Glad It's Over

We had Beth's annual assessment with DDA today. They want to make sure she should still be receiving SSI each month so every year they come out and ask about her abilities.

Can she use household appliances?

Does she get out into the community?

Is she able to take a shower on her own?

Does she know what to do in an emergency?

Can she schedule and keep doctor's appointments?

At the end, her case manager was pleased with how independent she is. Then he asked us about respite care and I always hesitate because Beth goes places all the time so it's not like we really need a break from her. But then he mentioned about her bowling and going to art classes and said that respite care can pay for that.

Wait, what??

All Aboard is a contracted respite provider and the state will pay them for us! It's not much each month, but it's somethin'!! Yes, please!

So he moved on to another part of the assessment, a part he does if we want the respite care. He's never done this part before and it really kind of stung. He began asking Beth questions:

"What year is it?" She didn't say anything.

"What day of the week is it?" She hung her head. "Is it Monday or Tuesday..." Then she responded, "Is Friday."

"What city are we in?" No comment.

"What season are we in right now?" No answer. "Is it Spring or Winter..." No answer.

"What building are we in?" Silence.

It was SO hard not to reword the question like I do so many times a day! Just a few minutes earlier she was signing papers and wrote the date, 2/20/15 but I don't think she realized he was wanting her to say, "2015." And this morning she asked if summer was coming (It took me a second to realize she wasn't talking about a person) because she wants it to be warm and sunny. So she knows the seasons. And after he asked her if we were at her house, she said yes. Chuck then said, "We've never really referred to this as a building before, huh?"

I mean, she knows she's at home, come on! She knows what a building is. She knows her address.  It was hard to sit there and watch her struggle with the meanings of these sentences when they were worded like this. Of course, I began to wonder if I had done enough to teach her while she was growing up... you know, all that mom-doubt stuff. Ugh. It just was so hard to sit there and watch her. BUT, because of the way she answered, it means the state will pay for a respite provider, whether that be All Aboard or others (he's going to send us a list) so I guess it's good.

But I'm sure glad that meeting is over!

It Made Me Realize Just How Far She's Come

We had Beth's annual assessment this week. The Support Intensity Scale assessment.

Beth's case worker comes to the house and they ask all kinds of questions about all kinds of things. Some of them seem a little strange, but they need to find out exactly how much support she needs for everyday life. That way they can decide how much financial aid to give her.

There are questions about health and safety: 'if Beth was home alone and there was a fire, would she know what to do?' (She told him she'd run out of the house and call 911.) He seemed impressed.

Protection and advocacy: 'if someone came to the door and told you they'd give you money if you gave them your debit card, what would you do?' (She said she wouldn't open the door. She'd just stay in her room.)

Community living: 'if she was summoned for jury duty, would she be able to serve or would she need help?' (I told him she had been summoned and we both went to the courthouse and they dismissed her from serving.) (Beth wouldn't have been able to serve. She just doesn't have the mental capacity.) He sounded surprised that she had actually been summoned. He's was young and has probably asked that question of a lot of clients and didn't expect to hear that answer. :)

They need to know if she needs help taking a shower or getting dressed; getting on and off the bus; making friends. Does she ask for help at work, is she able to read a menu... he was here for an hour asking question after question.

He has the notes from previous years assessments and I was really surprised at how much Beth has changed the last couple of years. She's no longer depressed. She is doing phenomenally at work. She is becoming more outgoing at church.

(Chuck and I are in a home group and one of the ladies told us that Beth came up to her and gave her a hug one Sunday! We don't even know J very well, but Beth has adopted her! Then J told us that Beth went up to her another time and announced, "I'm back!" and proceeded to tell her that she had been sick and had missed church... my mouth fell to the floor!) Our Beth!

It was a very good assessment this year. She's come such a long way and we hadn't even noticed!After it was over, Beth and I went out to lunch and then did a little shopping at an antique store not far from our house. Not a bad way to spend a Wednesday.

SIS Assessment

When your child turns 21 in Washington State, they are no longer tracked by the local school system. They officially leave school and the classroom. Your childs life graduates from para-educators and therapists to job coaches and case workers. In school you have the IEP. The Individual Education Program. It monitors your childs academic progress and offers goals for the following year.

After graduation, your child becomes eligible to receive state funding or SSI. The state needs a process to insure your child really is disabled and entitled to this money. The SIS - Supports Intensity Scale - was published in 2004 but I don't know when DDD began using it. It is conducted every couple of years and measures your childs need for support in various areas of their life. It covers home life, community living, protection, health care and employment just to name a few. It measures the type of support, the frequency of support and how much time is devoted each day for support.

For instance, health care. Is Elizabeth able to call the doctor and order a perscription refill? 1. Does she need only Monitoring? Verbal prompting? Partial or Full Assistance?
2. Is this support needed at least once a month? Once a week but not once a day?
3. Do we support her in this less than 30 minutes a day? Two to 4 hours a day?

Beth had her assessment on Thursday. It is very detailed and takes almost two hours to complete. The case worker comes to your home, pulls out his or her laptop and the process begins. We have been very blessed with Beth's case workers. Both have been very friendly, patient and understanding of all my questions.

I've been told this assessment is conducted every three years, but this was our second or third year in a row. Not sure why. We agreed that with adults with Down Syndrome, the assessment results won't change dramatically from year to year. Beth's mental abilities, at 25 are not going to change so neither will the type of support she needs. Beth's case worker is now organizing the information and will type up the report. We should receive it in a few weeks.

I'm thankful there are people out there, working to create a process that includes me in the decision making about the type of support my child needs. Now if I can just get them to come clean her room.....