Wednesday, January 27, 2010

The Oldest, But Not the Big Sister

One thing I found most difficult in raising my girls was seeing Sharaya and Diana surpass Beth in every area of life. Beth is the oldest of our children, but she's not the big sister.

Beth learned to sit up at 1 year old. We thought that was normal because we didn't have an older child to compare her progress with. Beth learned to walk at 2 years old; right about the time Sharaya was born. It really hadn't occured to us that most kids learn to walk at one. Because of Beth's delay, it was like having two kids under the age of one. But we didn't know that. What we did know, was that we had two kids!

As far as Beth remembers, Sharaya has always been there. And, I believe as far as Beth remembers, Sharaya has always been the big sister. I remember the moment it happened. I will never, ever forget the day Sharaya became Beth's big sister. Sharaya was 4, Beth 6.

We had just purchased our first home and the girls were in the front yard, running around and just acting silly. Beth was pushing a small, plastic wheel barrow when suddenly, one of the handles fell off. She instantly stopped, and looked over at me. I was standing on the porch video taping their goofiness. Sharaya immediately went over to Beth, reattached the handle then continued playing. Beth picked up the wheel barrow and ran off. I lowered the camera and just stood there, feeling emotions I couldn't explain.
Beth was old enough to remember when Diana was born and therefore was hurt when Diana surpassed her. Beth was okay when Sharaya learned to drive. But when Diana got her license, Beth told me that she too, wanted to learn to drive. Oh boy! I knew Beth would never be able to get a drivers license and gently explained that to her. I did tell her however, that she could practice. With fear and trepidation, I took Beth to the local high school parking lot. It was big and it was empty. She climbed into the drivers seat, fastened her seat belt, checked her mirrors and started the engine. My heart was in my throat. It was about that time another young high schooler pulled into the parkinglot and began his practice runs. Now I was sweating. I told Beth to take her foot off the break, that was all! Don't touch the gas pedal! We coasted a few yards when I told her to put her foot on the break. I had forgotten that Beth moves in two speeds, slow and slower. She carefully thought about my words, until I screamed them. The fence is getting closer now, the young boy is circling back around us and she is slowly putting her foot on the break. I screamed louder! She slammed on the break and said she was done. :)

Maybe I didn't give her enough credit. She actually did okay. I have thought about taking her up to the school again. Some day.

There have been some milestones that Beth did first: puberty, high school graduation. But for the most part, not only did her sisters do them before her, Beth didn't do them at all. For example, learning to ride a two wheeler, dating, moving out into a first apartment. Each one brought sadness for Beth and pain in our hearts that couldn't be comforted. There will always be moments of pain that you can correct with education or dialog, but we never expected pain from everyday life that we had no control over.

Our kids are adults now. Beth has become content with her life and the way things turned out. Being the oldest sister and having two big sisters can have its perks. She wins arguments just by reminding them she is the oldest! Sharaya and Diana will always respect her for her age, but they also protect her as their little sister.

Saturday, January 23, 2010

Hurry up already!

'Auntie' Beth came out of her room the other day and told me, "I wan Allison gwow up like me an Diana." I told her she will grow up and that one day Allison will come over and go into her room to color and play Barbies. She got excited, "I wan that!" I guess Allison can be a little boring. After all, she's only 7 weeks old.

Wednesday, January 20, 2010

Monday Night... you know what that means!


We played Sorry - Disney version!

Beth made sure that everyone had the right character on their space. Pooh on Pooh's space, Simba on Simba's space....

And for our background music? Some old record albums, The Beach Boys and Sound of Music! It was fun! We sang out loud and we laughed! We love Game Night!!

Saturday, January 16, 2010

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.....

Saturday, January 9, 2010

Goo-bye silly goose! Love you too!!

That is the way Elizabeth says good bye over the phone. Even if she's leaving me a message, she always ends with, "Love you too!" Probably because I end my messages to her with, "Bye. Love you!" I can always understand the end of Elizabeth's messages. It's the beginning and the middle I can't decifer.

One topic that remains a constant in the life of a handicapped child is education. Parents will stand around for hours discussing teachers, IEP's, therapy, inclusion and all the factors that go into deciding their childs education. Every child is different, but with handicapped children, the diversities are even greater.

Elizabeth's education always included speech therapy. The para educators would spend hours each month, teaching her to look at people when she spoke. They used flash cards to practice pronouncing words correctly. Most of the time however, they just wanted her to talk! Say ANYTHING!

As a little girl, Elizabeth was Miss Chatty Kathy. She would talk to strangers in the store, shake hands with everyone at church. She was outgoing and friendly. The older she got, the more she began to realize people had a difficult time understanding her. She became embarrassed when we would ask her to repeat what she had just said. Rather than repeating herself or talking slower, she stopped talking completely. She became painfully shy and an introvert. Part of it may have been our fault. Because we spent so much time with her we could usually decifer what she was saying, so when she wouldn't repeat it, we would. We would get so uncomfortable waiting for her to talk, you know that awkward silence that just hangs there, screaming to be interrupted? We would blurt out her response! It got to the point where we were doing most of her talking for her. Boy, I wish I could go back and change that!

Entering high school didn't help either. The groups she hung out with as a little girl at church were getting into subjects and situations that Beth didn't fully understand. We didn't want her sitting in a Sunday school class where they talked about dating and social pressures when mentally she was only 10. So we made the decision to stop sending her to the activities. She made new friends in her special ed class at school, but due to her lack of communication, she didn't socialize outside of the classroom. (From what I was told, she didn't do much socializing inside the classroom either!)

When Beth turned 23, we let her have a TV in her room. If we had to do it again, I don't think I would give her one. She spends hours at her desk, writing in her notebooks and watching TV. While on vacations, we noticed she would begin to talk. Constantly. Without ever stopping. That's when we decided to have a few nights a week where we turn off the TV and play games, do projects. Sitting in front of the TV is okay s-o-m-e-t-i-m-e-s, but now we are trying to break bad habits that have become a way of life for her. As I'm typing this out it all sounds so, so... "Well duh!" but I really wish we had considered this years ago.

Her speech is improving, it's just that now we can't understand her. She speaks so fast I sincerely don't know what she says! And the cell phone is the worst. I have tried to show her how to move the mouth piece away from her nose and toward her chin, but she hasn't caught on yet, because all you hear is her breathing. :)

Well that and, "Goo-bye silly goose! Love you too!!"