Wednesday, June 12, 2013

This Isn't It

If you're looking for a post that is gonna make you feel good about your adult with Down Syndrome, a post that talks about the huggy-bear kissy-face life with an adult with Down Syndrome, this isn't it. If you don't want to hear about the hard stuff, you may want to stop reading here.

The last couple of weeks have been hard to understand with Beth. Mentally, physically. I don't know whats going on but, well here, let me just tell you.

As she was leaving for work recently I asked her if she had her phone. When she's on her phone, talking or texting, she feels like everyone else. It's her lifeline and she hates to be without her phone. I know this, so I wanted to make sure she had it. She told me, "Uh, yea!" in a very snotty, I'm-an-adult-and-I-don't-need-you-telling-me-what-to-do kind of way. She left and a little while later I walked into the office and lo and behold, there was her phone hooked up to the charger. Later that night she called the house and Chuck could tell she had been crying. I guess when she tried to call us and realized she didn't have her phone, she had to ask a co-worker to use theirs.

A couple days later I got a call and she was sobbing. Absolutely sobbing. Through her tears she told me that she had forgotten her bowling ball. She goes bowling in the morning, then straight to her job class. I figured she left it at the bowling alley and I just figured I would call them right away to make sure they knew it belonged to someone from the All Aboard group. I finally got it out of her that she left it at job class. Whew. That is a small office that works with adults with special needs. A safer, calmer place and I knew they would still have it. They did and her job coach brought it to work later that week. But Beth was a basket case on the phone. I had to calm her down and reassure her that she would get her ball back.

A few days later... I walked into the kitchen to see her fixing a tuna sandwich. I asked her if there was more tuna in a container in the fridge. She opens the door and pulls out a small container of tuna. I told her that whatever she doesn't use she could just put in that container. "Okay." Then she looks at me and slowly pulls back a paper towel that was wrapped around her thumb. A paper towel soaked in blood. "Beth, what happened?!?" She didn't say anything. Just pointed to the partially open lid of the tuna can. Oh my word! I turned on the cold water and stuck her thumb under it. I was afraid to look at it. I pulled it out from under the water and could see an L shaped cut, then the blood began pouring again. To make this long story short, we discussed, blood pressure and clots... It wasn't as bad as I thought it was gonna be and after a few minutes, the bleeding stopped and we were able to just put a bandaid on it. Oh my word. Seriously??

The next day... (yep, it keeps going) I came home from work and she was in the kitchen. I was gonna fix some lunch and we're talking when all of the sudden, she opens her hand to show me this long, huge chunk of hair. Honestly, I held it in my hand for maybe 30 seconds, not saying a word. I didn't know what to say! My mouth was open but no words were coming out. What...? How...? Why...? Then she said she was trying to get the snarls out. Oh my word. "You need to use a brush!" Why on earth did she think cutting her hair was the answer?!? I asked her to take out her pony tail and then entire left side of her head was cut about to her shoulder. But not a nice clean cut, oh no. Some to her ears, some to her shoulder... I told her we were gonna have to cut it short to make it all even. "Noooo!!" I asked her if she would rather have Diana cut it and she said yes. So, on Monday night, Diana got out the scissors and began to cut and trim and style.

Oh my word. Life with kids is messy. But it's different with kids who have special needs. My other girls would NEVER think to take scissors to their hair to remove snarls. If they cut themselves, they automatically know what to do. But lately Beth doesn't seem to have a clue. It's like she's lost. Like she's lost all ability to function normally. To think rationally about basic things. I'm concerned. And a little nervous about what might happen next.




Everything has turned out okay. Beth wasn't seriously cut on the tuna can. Her hair cut turned out cute. She got her bowling ball back... I'm trying to be grateful for they way things have ended up, but it's nerve-racking and emotional to suddenly have all these things happen. Especially when you can't explain it.


Jennifer Scott said...

I'm so sorry your week (?) has been so rough. We all have Murphy's Law kind of weeks/days.

I forget how old she is ( I wanna say late 20's), but has she seen a neuro lately? I'd be concerned since it's so sudden.

Just a thought. I hope things get better for you guys.

Jennifer Scott said...

By the way... I think her hair looks fabulous!!!

Katie Watson said...

I'm newly learning about Down syndrome (my son is just 4 months old), and I really appreciate reading a post about frustrations with your adult daughter. It is nice to hear stories about the best days, of course, but it's also reassuring to hear about the tough days. It is good to hear that the rough days, while frustrating and worrying, are also a part of normal life, if that makes sense.

I realized as I read your sidebar that your Beth is the same age as my little sister, also named Beth. I look forward to continuing to follow your blog!

Caz said...

Cindy, that sounds hard for both of you. I wonder, could Beth be experiencing low mood or depression? You're the expert on Beth - if you are worried then I think it's worth looking into what has changed.

Stephanie said...

I'm sorry that things have been difficult lately with Beth. I'm glad she was OK after the cut on her hand!

Thinking of you and Beth--hugs!

PS--her hair does look cute.

Jenny said...

Cindy I am always glad you share the good AND the bad with us. I for one like to see a balance of both, because that is real life. I'm sorry for the struggles you are going through with Beth right now...Hope it gets a little better and she is just having an "off" week.

I think her hair looks cute by the way :)

Nan said...

Oh man... I can relate! I keep trying to figure out how to blog about it (in the midst of 12-hr days here!) but this I do know ... she is also sort of trying to solve problems on her own. WE are so struggling with separation over here, and the mindless goofy (sometimes dangerous! yup!) things Jess does as she tries to do it independently. I always figure if I am feeling really uncomfortable with where she is going/where we are (in life I mean, not on the street) a good dose of God & therapy (and or expert advice) sure help. Pray and consult. Pray and consult.
Thanks so much for having the courage to share ... we parents of "older" persons might want to write about that particular burden.. which I think we all feel.

ckbrylliant said...

Thank you for sharing your real life. I am glad everything turned out 'okay'. Praying for safe steps towards independence.

Margaret Bender said...

Hmm, I wonder what is bothering Beth? Sometimes it is soooo hard to get our kids to tell us what is bothering them..I'll be following, best all of you. Gary

Kristin said...

Dang - she sounds like ME (except for taking scissors to my hair). I'm a stress case right now. A lot going on - not all bad, most of it's not bad, just a lot of decision making stuff. Maybe she's got something on her mind... a boy?? Boys make us lose our minds - haha.