Beth had her Special Olympics Bowling Tournament last Sunday. I wasn't able to go but Chuck took her and said she did well. She ended up winning a bronze medal!
They came from the bowling alley right to church and she commented how she was "still wearing my bowling shirt." She had a hard time because it's not something she'd usually wear to church! Definitely out of the normal routine for her.
At practice a few Saturdays ago, I saw her get up from her spot, go over to a friend and give her a big hug! I was a little surprised because Beth never initiates friendship.
Then she went to another friend, tapped her on the shoulder and gave her a hug!! Oh my gosh, if you knew Beth you'd know what a huge deal this is for her. I was so proud of her!
Her job coach has been taking her to different stores and she introduces herself to the manager. They're working on eye contact, speaking clearing and loudly enough for them to hear.... Last week they went to the mall. Lots of stores there to practice! I think the pleasant response she's getting from the managers is encouraging her to approach others.
I've talked to a lady at church who is in charge of the ushers and greeters and we're going to find a place for Beth to greet. With the practice she's getting at the mall, this will just reinforce what her job coach is doing.
The Down Syndrome Awareness magnet arrived yesterday! I also got a keychain. I'm so excited! I mean, I am really excited about this!
It's kinda funny though because I didn't use to be excited about Down Syndrome. When Beth was about 4 or 5, (we were here in Washington so she had to be at least 4) Chuck and I went to a support group. I don't remember if it was an 'official' Ds support group or just some families getting together. But I remember the only thing they talked about was special needs. Therapy, para educators, doctors, treatments, etc.
On the way home Chuck and I talked about how we felt like we were drowning. Beth joined our lives already in progress, we didn't join hers. Our family is into sports and photography and traveling, but none of that was talked about. We didn't really get to know these other families, just mainly vented about how difficult it was to raise a child with special needs. Maybe we didn't give it a chance.
But we never went back.
Now don't get me wrong, we spent many hours with Beth working with her speech, potty training her, going to IEP meetings. In fact, our girls have felt that we often neglected them because we spent so much time with Beth. I feel horrible that they have those memories and feelings about childhood. Parenting isn't easy!
Beth joined our family. She became a part of us. Having Down Syndrome had an effect on our family, as it should but I don't think we spent her growing up years saturated in the world of special needs.
Now it's almost all I think about. Now that the girls are grown, I am wanting to make a difference in the lives of families who have children with special needs. The best place for me to start is at our church.
We have our Special Connections Sunday school class and I'm constantly thinking about ways to improve it. Equipment we can add, sensory toys we could purchase. We recently moved into a bigger, better room. We now have our own bathroom. A huge deal! We have direct access to the outside playground. I've been looking at calming lights and tents for quiet time. We have some carpeted stairs to help the kids with their gross motor skills.
I want to get the young adults who have special needs involved in youth activities. I want to encourage the youth of our church to get involved with the young adults with special needs. It can only improve the relationships between the two groups and show that living life with special needs is more normal than they think!
I have so many ideas!!! But I'm not sure where to start. At times it seems so overwhelming; when I see the big picture it makes me want to run away! We've been attending Westgate for almost 23 years and I've never had this desire before. I know it's the Lord putting this in my heart.
Deep down, this is what I want to do with the rest of my life.
A physical therapist started coming to our house when Beth was a few months old. Cristina came twice a week if I remember correctly and worked on teaching Beth how to crawl.
I remember everything was broken down into bits and pieces with a main goal in mind. We would put Beth on her tummy, then move her legs up underneath her to give her the sensation of crawling. We'd move one arm, then the next to get her mind thinking about the movement of crawling.
We'd open and curl her fingers to give her the sensation of grasp and release. It seemed nothing happened naturally. We taught Beth every little movement in hopes she would eventually do it on her own.
I remember feeling like it was overkill. I mean, she was a baby! Why couldn't we just let her be a baby? She'd eventually do this all herself, right? I had nieces and nephews that did this stuff without much help at all. Sure, we'd move their legs and hand them toys, so we'd do it with more purpose for Beth.
I'm sure I was niave. Beth was our first child. She looked and acted fine to me. But I was glad they were willing to help. It was all new to me. Diapers, bottles, doctor's appointments. Adding therapy didn't seem like a huge leap. It was only once or twice a week. And they came to the house.
When Beth was two, she started school. Got on the school bus 3 days a week and went to preschool. There was no additional therapy. Of any kind. I'm sure they did a lot of therapy during the school day, but nothing I was involved with. I read your blogs and you're going to therapy numerous times a week! I'm thankful your kids are getting the extra assistance.
To be honest, your kids seem more 'advanced' then Beth was at their age. I know all kids grow and learn at different paces but it seems things are improving for kids with special needs. I'm sure as medical technology improves and specialists see the advantages of school and different kinds of therapy, it can't help but improve the future for our kids.
This is Cristina working with Beth to teach her how to roll over.
Beth is 6 months old in these pictures.
(Ya gotta love the old TV and cassette player!)
I don't remember who the specialist is on the right.
I'm sure she was taking notes for Beth's IEP.
These are the results of an evaluation done when Beth was one year old.
It shows she was mentally and physically around 7-9 months.
(You can click on it to make it bigger.)
So this is what therapy was like back in 1984. Is it much different today?
I usually don't get sick. I'll get the common cold once or twice a year, but have never been hospitilized or had anything major. I take an over the counter medicine and am good to go. But not this time.
I'm getting over pneumonia. I've never had it before and I don't recommend it. I haven't taken a deep breath in over two weeks.
I initially went to the walk in clinic where the doctor perscribed an antibiotic. While laying in bed resting, I began to read:
Possible side effects that may occur while taking this medicine include diahhrea, dizziness, headache, loss of appetite, nausea, stomach upset or vomiting. Can I just say I had all of these. And it wasn't just any headache, it was a migraine. My first. Don't recommend that either.
I continued reading: muscle weakness, breathing problems, tarry stools, numbess in arms, chest pain, dark urine, fever, chills, hallucinations, irregular heartbeat, loss of consciousness, hives, swelling of the mouth, severe sunburn, mood changes, confusion, depression, yeast infection, vision changes, unusual bruising, peeling skin, seizures, suicidal thoughts... 'This is not a complete list of all side effects that may occur.'
I would love to have one of these on my car. Wouldn't it be exciting to get out of your car at the mall, be walking passed all the other cars and spot one of these? I would be searching the mall for that familiar, beautiful face.
Our family members could purchase one. Siblings. Cousins. Grandparents.
I'd like to imagine there would be a lot of them. We'd spot them on the freeway, stopped at a red light, parking at the grocery store.
Does anyone have one or know where we could purchase one? I think this would go a long way in bringing awareness, all year long.
Yesterday was Beth's birthday. October 10 she turned 27. (Her and Sharaya's birthdays are 2 years and 4 days apart.)
Last night Chuck and the kids took her to Funtasia to play video games and skee ball and bumper cars.... Then they went to dinner at Red Robin. One of her favorite places. (I'm at home with pneumonia this week. Never had it before. Don't recommend it.)
Beth told me last night that they sang happy birthday to her at Red Robin. She was beaming when they got in at 10:00! Unfortunately, she was too tired to wake up at 7:30 this morning to go bowling with All Aboard. When her DART bus arrived, I went down to check on her and this is what I saw:
She's 25. Where did the time go? It seems like just a couple of years ago she was born. To be honest with you, Chuck and I were so relieved to learn she didn't have Down Syndrome. We knew it wouldn't have made a difference to us if she did...
but we were so thankful she didn't.
Growing up, she was such a great 'big' sister to Beth. And then to Diana. She was (and still is) so thoughtful, always thinking of others; noticing what they might need. She looked out for her sisters and always wanted to do the right thing.
She's independant. When she was little, Beth couldn't pronounce Sharaya (Shuh-ray-uh) and called her Raya. It actually came out more like Yeahya. And the name stuck. We called her Raya until she was about six. We took her to the school a few weeks before she started Kindergarten and were all looking in the windows. I told her that maybe one day the teacher would write her name on the board! She said, "Yea! She'll write Shara!" Chuck and I looked at each other, 'Who's Shara?'
That's when she told us that from now on she wanted to be called Shara. Okaaay. So Shara it was. Until high school. Then it became Sharaya. More grown up I think and she enjoyed watching her teachers try to pronounce it! By her Junior year, as the teacher held up the attendance list and just stared at the names (our name is Anderson - she was always first) her friends would all yell, "Sharaya!"
Now she's married and has a gorgeous little girl of her own to raise. I expect she'll grow up to be just as independant, thoughtful and loving as her mom. :)
That's what Beth told me in the car this afternoon.
She showed me the newsletter she brought home from bowling. She pointed to the top sentence and said, "They talk about this." I asked her if she knew what 'passed away' means.
She shook her head no. When I told her, she closed her eyes and laid her head back on the head rest.
The newsletter read, "For those of you that have not heard, Gene Rogoway passed away on Friday and he will be sorely missed. Gene was the Founder and visionary of All Aboard and a strong advocate for the special needs population."
When Gene's son Mike turned 21 and left the school system, there was not much for him to do. Gene called a few of his friends (all special needs) and invited them bowling, to the movies. People found out and wanted to be a part of it. More and more young adults got involved and Gene knew this was bigger than anything he originally planned!
All Aboard now has many programs and activities for adults with special needs. Each week they have a cooking class, bowling, karaoke, art, swimming. Beth has been a part of it for a few years now and really loves it. It's become her main social outlet. Their Tuesday bowling league has over 120 participants and is one of the largest in the state!
I don't know how his son Mike is doing. Beth said he wasn't at bowling today. He had been living with a friend; moved in with Shannon (All Aboard music teacher) when his dad became sick 2 years ago.
Gene will be missed. He has been a friend and mentor to many, many adults in our community.
You can click on All Aboard to learn more about this amazing program.