My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Sunday, June 27, 2010

Keeping It Real

by Joyce...scary looking sky in Cleveland tonight. For a few moments, I just stood watching the clouds swirl about. It got colder, the wind picked up speed, and the color changed from dark grey to yellow to pink. It was hard to tell exactly what was going to happen. It was an interesting observation.

And it reminded me of what has been swirling about in my head lately. I can't fully explain it, so I'll just throw it out there. Sarah is changing. And not necessarily in the direction one might hope. Truthfully, I have been noticing it for the past few months. It's not one major thing, just little things here and there. A blank stare. The lack of response to direct questions. Confusion. Lot's of confusion actually.

Here's an example. The Friday before TJ's graduation, I decided it would be the perfect time to have the carpet cleaned in our house. The boys were already in Columbus and once Sarah and I left, the house would be void of people all weekend. On Thursday night I moved all the little things like the trash can, the desk chair, a few containers with games in Matt's room onto his bed. Sarah must have asked at least 25 times why I did that. And every time I told her the next morning the guys were coming to clean the carpet. The next morning we got up and I did the same thing in our room , TJ's room and then went into her room. She threw a fit. At first I got a little angry with her. Then I realized she was really so confused. I told her as soon as we got home from Columbus we would put them back on the floor. She sat and sobbed for at least half an hour. Then the crew came and she sat and watched them from the room with wood floors, shampoo the carpet. When they were done, she asked me if her room was still the same color. I didn't know what to think. I assured her it was the same carpet, just cleaner. She seemed OK. Then as we were backing out of the driveway, she asked me if the carpet would still be here when we got back. I assured her it would be yet it left me with a heavy feeling.

That whole weekend she kept doing things that just seemed off. When I asked her where she wanted to eat, she couldn't remember the restaurants we usually go to. So I started verbally listing them off. That usually would trigger some response followed by, "oh ya and I want a..." This time I got nothing. No response. This had me more worried.

Then we went to The Karate Kid. She held my hand the entire time. I dismissed it as her being a little frightened. There is a lot of fighting in that movie. When we came out she seemed like her old self, posing as the Karate Kid in the parking lot. The next day we went to see Letters to Juliet. As the plot began to unravel, I thought to myself, she probably does not have a clue what is going on. And then when a certain situation happened(I won't give details in case you want to see the movie) she said something out loud that blew me away. It was on a very high level of understanding. And I dismissed my worries.

Then we had an incident at the office/store. I wrote a little about it on our store blog.

This week, I saw more of the behaviors that have me a little worried. Forgetfulness, confusion. Just a general slowing of processing ability. Nothing drastic.

I forced myself to spend some time tonight searching and reading about the early onset of Alzheimer's in adults with Down syndrome. It scares me to the core. Yet, I know we are in amazing Hands. We learned a long time ago to take one day at time. And that is what we will continue to do. It may be nothing. It may be that because I am spending more time with her now that her job training program is off for the summer, I am overreacting to little things. One thing I know for certain though, a mother's worry is never done.


A Lady Called Amy said...

thank you for blogging about this. while my son with Ds is just a baby, (nine months) it seems like it's hard to find parents who blog about their kiddos past the age of five? i follow one or two, but i keep wondering what happens after that? i know it's different for everyone but reading about other peoples lives and how they handle anything and everything is really a great comfort for me. i'm praying for sarah, and for you.

Mel said...

Hi Joyce, this must be very worrying for you. Have you checked her out medically? Something as simple as a urinary tract infection or dare I say it, worms, could cause similar symptoms. I hope it is something simple like this. If she has only a mild case and a high pain threshold she may not let you know, or even know herself.

Thinking of you
Mel :)

Anonymous said...

Will be thinking about you and sending good karma your way. It is always scary when our children seem to be 'off'. BUT always trust your gut. You know her best. It probably wouldn't hurt to seek help. Although I know she has had tons of blood work done lately. Is she on any kind of homeopathic type regimen or vitamins or anything.

Keep us posted. We'll be thinking of her often!


Looking Up said...

My son is only 18 months old, but I know what you are saying. A mother's worry is NEVER done. Praying that Sarah will be back to her old self again soon.

my family said...

HI Joyce, I really dont have answers or suggestions since WIlliamis only 4 but has she ever taken supplements? Would you recommend something like that to moms with young children?
You all r in my prayers

Rochelle said...

Thanks for always keeping it real Joyce. That is why we love following you guys.
Praying for you both, as you figure out what is going on with Sarah!

jjpsmommy07 said...

Saying prayers that Sarah is ok. Sarah is an inspiration and I love reading about her daily life. And like another blogger said not many people are out there with older children. Thank you for sharing your life with us.

Karen said...

Oh, Joyce. We're praying here, and trusting that God has a plan in everything that He does. And still, I hope it's nothing at all, because she's far too young for even early onset. Hugs to you all.

The Spicer Family said...

Yes, I would be worried, too. It's a mom thing, isn't it? I'm so sorry it's upsetting Sarah, too.

I would like to echo the first comment about how much I appreciate your blogging about an adult with Ds. Although I'd like to stick my head in the sand a while longer, Vera is already 11 and she'll be an adult next time I blink. I need friends with older kids showing me the way!


Mama Mason-Mann said...

I can only begin to know how this must worry you. I truly hope it is just a passing thing, maybe bug or something. Please keep us posted and we'll be thinking of you both and sending all the positive vibes we can!

Kristen's mom said...

Hi joyce, Kristen has this place we all call "Her Zone" If she is there you could talk to her and she will never hear you. Even when she was a child she would do this. I can't really explain it other than she appears to be in her own place, sometimes she laughs and even acts as though she is carrying on a conversation. Sometimes it is worse that other times. We noticed it a lot when she was in the hospital on many drugs. Once I get her attention, even having to touch her arm she is fine again. I am sure this makes no sense to you and most of the time no sense to me either. Kristen also continues to ask me the same question over and over. Hopefully for Sarah it's justs the changes and the excitment of the new store. Your Sarah inspires us every day.

Alex's Mom said...

Joyce, This is such a great observation and something we all need to be aware of..yes it is scary stuff, but the more realization we have and awareness from paretns the better off our kids will be...thanks!

Anonymous said...

Have you talked to Hannah's mom lately?


Lizzy Turpin said...

Joyce, here we are all giving medical advice, but we all love y'all.
My thoughts...endocrine system.
thyroid or hypoglycemia.
A good chemistry and thyroid panel will hopefully solve this puzzle....I hope so.

Mary said...

Hmmm, I would be worried too. I hope it's nothing.

Adelaide Dupont said...

Joyce and the Mums:

There are indeed people who blog past 5.

(There are also "Survive to 5" parties, in which we are reminded not to take this - or any - milestone for granted).

The specific blog I wanted to point out here is:

Widening Circle from Ontario. Jessie is a rough contemporary of Sarah and a co-chair of her group.

* * *

As to the dementia suspicions:

Yes, cognitive decline does start to happen in the early 20s. (This affects executive function, and can result in mild or moderate memory impairment and emotional stuff too).

I have just watched a great film called Lou. If the audience showed half the understanding which Sarah showed watching the film which you discussed in the blog, then it would be something. The audience was mostly elderly. (I must warn that the R-word was said in one scene, by a child).

After I watched Lou I remembered that there is a good programme, which emphases strongly emotional memories/experiences over the intellectual ones.

It is created and developed in England.

Here it is:

SPECAL: Specialised early care

This blog may or may not have reference:

Alzheimer's Reading Room

And there is another interesting one called Spark of Life, devised by Jane Verity:

Spark of Life

"Don't forget to remember!"

heidi marie said...


just letting everyone on my bloglist now that i have a new site now- the site henry's mommie will no longer be in use. everything has been transferred over to my new site!! hope to see you there.


Scarehaircare said...

Joyce, reading the other comments, it appears one had the same thoughs I did. Screening starting with a thyroid panel. The symptoms are similar. Sending much love and hugs your way.

Cindy said...

Joyce, I just read this post. This change concerns me and I can't help but rewind the last few years with Beth, trying to recall any similar behavior. I will be praying for you and Sarah.

Dawn said...

Wow, I can definitely relate to this post. While my daughter doesn't have DS and we know what is changing her behaviors, it is still so hard to deal with and I know your worry.

If you ever want to talk or if I can help in any way, please feel free to email me. My email address is on my blog profile.

I'm keeping you and Sarah in my thoughts & prayers.