Waiting for Muffins!

Neglect...and Balance

So I neglected my promise yesterday to get a post up, but for good reason.  It is very rare that I actually get out of the house alone to do anything.  Not only did I get to run to the fabric store and grocery store really quick after bedtime, but I got a last minute invite to head out to the movies with friends!  So a relaxed and happy mommy is well worth missing a post:)

For today, I must admit some neglect.  Aubrey has 5 therapist that come to the house weekly.  Nutritionist, PT, ST, Auditory Impairment, and Developmental Specialist.  Seems overwhelming, but we have it almost down to a science.  They each have there day and time, usually in the morning, and then the day is ours.  But between these regular therapy sessions, and appointments, and unexpected appointments to other doctors and trying to sell our house and have showings...we have not been working really hard outside of therapy on our skills:(  Lucky for me, Aubrey is a fast learner and once given a task, usually picks it up without too much practice, but I'm feeling kind of bad these days that her only "work/play" time is with her teachers.

Last week, we ended up with a showing that happened to be right after therapy, and I was behind in my cleaning and getting the house ready.  Did I mention how AWESOME our team of therapists is?  Well they are and even though I didn't say anything, I was granted permission to finish making the beds while Melissa and Aubrey had ST one on one.  She was curious to see what Aubrey would do...and she did well without anyone there to distract her and she fully cooperated with all that she was asked.   It was a good test of how she would do with out me always sitting there.

After Melissa left...I just had to do a quick vacuum of the entire house (a good 30-40 minute job).  Aubrey likes to sit in this chair in our bedroom.  Partially because it is really comfy and partially because she is able to get up into it herself:)  She went straight in there after therapy while I was vacuuming downstairs.  (good PT practice though:)

As I was about to get started on the stairs and head up...I found her like this:)

She got tired of waiting for someone to feed her lunch and put her down for a nap and just took care of it herself!  My sweet, neglected girl!

Yes, I did finish all my vacuuming before I scooped her in the car to finish her nap...but she was rewarded with lunch out for her troubles!

Sometimes, when I stop and actually think about her schedule and the things that we do for her...it can get overwhelming.  BUT, I am not afraid to cancel an appointment if we just need a break...and very rarely do I do make up sessions if we miss one.  We do the best we can and you just can't ask for more and sometimes, too much of a good thing is not so good.  Although I feel like we need to do the work that the therapists ask us to do weekly, I don't ever let the "work" become our whole day.  I feel like it is just as important for her to go to a good music concert or play in the dirt or just giggle on the floor.  It is important to have a balance of everything.

Someday's it feels like all we do revolves around Aubrey and the things we do for her because she has Down syndrome.  And it is then that I step back and remind myself that the Ds is only 1/47 of who she is and she is mostly just a little girl who needs love and laughter and friendship, just like everybody else.  Sometimes the balance comes easy and sometimes it doesn't, but we're getting there.

Giveaway Winners

Giveaway winners from Tuesday's Snack Bag Post:  

#2  Patti said...

How exciting! I love the one Aubrey is playing with :)

#5  Kelli said...

Great job Aubrey! I think Lindsey would have pitched the fork and bowl off the high chair before she even realized there was food in it.
I like the last bag shown with the swirls.

CONGRATULATIONS!  Hopefully these will make snacking and eating more fun and work on all those fine motor skills for Lily and Lindsay.

Contact me with your information and I'll get these out in the mail this week:)  For everyone else, 10% of each order from now til the end of the month still gets donated to NDSS.

31 for 21--Day 13

A Story about My Two

Daughters

How to Live in the World of Possibility

By Candee Basford

My first daughter was diagnosed with Down syndrome soon after she was born. Her language is delayed. Her abstract thinking abilities impaired. She is easily distracted and sometimes refuses to follow or listen to directions. She has some autistic-like tendencies. She has a bilateral hearing loss.Hearing aides have been recommended but she refuses to wear them. She has an uncorrected vision of 20/200 and a corrected vision of 20/60 at a distance. She is highly farsighted with nystagmus. She can be extremely stubborn and sometimes makes inappropriate comments. She can perform some functional tasks but has trouble with basic tasks like counting money and making change. She can follow simple cooking instructions. She can make her bed.

My second daughter is a sophomore in college. She is majoring in science. She loves anatomy and physiology, biology and anything connected to science. She loves to read but because of a vision loss she needs to take frequent breaks. She has a hearing loss so it helps if she can see the speaker and keep background noise to a minimum. Recently, she has become very interested in sketching portraits. Because of this new interest she is taking a course in advanced drawing. She is popular – the life of the party. She loves to flirt – in fact, her senior class in high school voted her most flirtatious. She has many friends. She has the ability to make other people feel welcome and loved. She is persistent, loves having fun and has a great personality. She loves to dance, travel and write to and receive letters from friends. She dreams of starting her own rock band.

The story of my two daughters illustrates the power of our words and our perspectives. It illustrates the power of the scientific processes and the labels we continue to use to diagnose, predict and sort people.

How? Both stories are about the same person, my daughter.The stories “differ in the way they are constructed – in their purpose – in their consequences – and in the assumptions they shape.” (O’Brien & Mount)

The story about my "first daughter” was constructed from exact words and phrases found on my daughter's school and employment related documents, written in the language of professionals, educators, psychologists and job specialists. It tells what she can’t do, won’t do and why. In this story, she is in need of repair, and thus in need of lots of professionals to fix her. The purpose of this story, in part, is compliance with federal and state regulations. The first consequence is that we (and the rest of society) accept the story as true and begin to adopt the language and beliefs and practices. Once that happens, the sad consequence is segregation, a client’s life, a planned life surrounded by professionals. The assumption in the story about my first daughter is that she is needy, broken, difficult and – most important – that her life should be safe and predictable surrounded by the service system.

The story about my “second” daughter was constructed from love, experience and by paying attention to gifts. It is told from the perspective that my daughter has immeasurable capacity once she has a valued and connected life in her community. The story about my second daughter is shaped (and lived) from a capacity perspective. This story is told in “context” of a life connected to others, a life that unfolds in exciting and unexpected ways precisely because of the many relationships she has. The consequences of this story are community and risk taking and surprises. The consequence is citizenship. The assumption in the story about my second daughter is that she is person who has capacity, interests, gifts, and contributions especially when her life unfolds in the presence of and participation in community.

The story of my two daughters represents two different worlds– the world of measurement and the world of possibility. Often, as my daughter grew up, I felt the overwhelming gravity of the world of measurement, pulling her toward specialized services and segregation with the promise of safety, and simplicity, and repair. In the world of measurement you get to know others by measuring and comparing. But it is the world of possibility that I find most powerful and promising.

The story about my second daughter is the story of possibility. It is the NEW story that we must learn to tell. It is the story told (and lived) from a capacity perspective, from a community perspective. We can learn to tell this NEW story by first examining our own perceptions and advocacy efforts. We can learn to tell the NEW story by listening, seeing, asking, discovering and taking action in the direction of gifts and capacities. We can learn to LIVE the NEW story by supporting rich relationships and taking actions that lead to more inclusive opportunities in our schools and in our communities, for it is these rich inclusive and ordinary experiences that will yield the context necessary to live in the world of possibility. 

Copywrite 2006, Candee Basford

*Candee Basford is an author, artist, facilitator and independent consultant. She is president of Ohio TASH and active in capacity building approaches. She holds a Masters degree in adult education. Learn more about her and her daughter Katie here.

**An article by John O’Brien and Beth Mount inspired this essay. It is titled “Telling New Stories, The Search for Capacity Among People with Severe Disabilities” .

***For more on how to live in possibility read “The Art of Possibility” by Zander and Zander.

http://www.candeebasford.com

31 for 21--Day 14

Milestones...it can sometimes be a very dreaded word.  It's one of the first things that I thought about when I found out Aubrey had Down syndrome...she would be delayed...behind her peers...forever trying to catch up.

For the most part, I have gotten over it.  Maybe it is because she is so small and that is a fall back excuse, because just learning to walk is a 1 year old thing...and well that's how big she really is...or maybe it is because the LOVE for her is so much greater and that far outweighs anything else that comes our way...or maybe we are just so grateful that she had open heart surgery at 4 months old and is completely healed that nothing else really matters in this world except that we get to have her each day.  What ever it is...I'm over it.

Sometimes the "work" just gets tiresome and old though and we get lazy and stop practicing, because, well, sometimes you just need to LIVE and not think all the time about what you should be doing or need to be doing with her and just ENJOY her...and that is where we are at in some of her development.  I have found that I just want to enjoy activities instead of worrying about what she is or isn't supposed to be learning.  She'll get it all eventually...

BUT, what I love about these long awaited milestones...is that sometimes, we spend soooooooooo long working at them, that you never think that they will happen.  And then one day, when you aren't even working on it, and you are standing in the kitchen making dinner while she talks in the other room....IT happens.  And you would think that it was the 4th of July and there were fireworks in our own backyard, because when you wait so long for something and work so hard for it...that milestone is priceless.

 I'm guessing that most people don't mark this one off in the baby/toddler books...

 But tonight, she climbed up onto the rocking moose...all by herself...for the very first time!  AND she did it while holding onto her baby doll!

 She had wanted to do this for 6 or 7 months...and tonight she finally found success!

So much so that she didn't even want to get down:)

And it was so worth all the hard work and waiting and trying that we have been doing all this time...so worth it to see her enjoying it and doing it over and over and over again:)  The milestone celebrations will never get old ...I promise!

Wordless Wednesday--Coloring:)

31 for 21--Day 12 with a GIVEAWAY

Many children with Ds have feeding issues...Aubrey did too.  I say did, because with A LOT of hard work, most work past their problems, and she did just that.

I wrote a lot about her first year of feeding issues last year if you were interested in going back and looking at how we got from bottle feeding, to breastfeeding and then on to solids and cup.
http://blessingsfromaubrey.blogspot.com/2009/10/early-months-bottles-and-breastfeeding.html

http://blessingsfromaubrey.blogspot.com/2009/10/solid-food-try-this.html

http://blessingsfromaubrey.blogspot.com/2009/10/cupspart-one.html

http://blessingsfromaubrey.blogspot.com/2009/10/cupspart-two.html

http://blessingsfromaubrey.blogspot.com/2009/10/cupspart-two.html

One year later, I can say now that I am only cutting grapes in half and not into eighths!  She is drinking from any cup provided, but much prefers to have Mommy's water bottle (that has a straw) to her own straw cup.  She eats just about anything.

Once she started eating, I really tried to give her what we had as much as possible and she loves it.  She loves, eggs (which we found out she has a sensitivity to and limit to special occasions), pickles, hummus, pasta, crackers, tuna, raw carrots, and anything that is dessert like:)  We are lucky that besides being less than excited about milk and cheese, she is a great eater now, and on par with her peers...though we are working on spoon self feeding still...but that is mostly my fault since I don't like the mess that goes with it.

Tonight we had a favorite:  Tuna Pasta Salad...a recipe from my own childhood.  So I thought that I would share it.  I usually make a double batch because it is such a favorite around here and the kids love leftovers.

1 lb. pasta (elbow works best, but anything small and fun works)
1 can of tuna (drained)
1 cup cheddar cheese (cubed)
1 cup pickles (cubed or that small)
1/2 onion chopped (I usually leave this out since I am the only one who likes it in there and I get so much grief from everyone else about it other wise--pick your battles)
Mix with mayo to taste (about 1/2 cup)

I don't measure anything anymore...I just eyeball everything...so I think this is about right.

Notice that she is so busy stuffing face that she is just holding her fork instead of using it:)  Just can't waste the time on a fork for something that you love so much.

Eating takes so much fine motor skill, like using a fork and the pincer grasp and so I am always looking for ways to keep her working at improving those fine motor skills.  The snack bags that I make in my etsy shop are a great example of that.  I've been making them for a couple years, and never dreamed that Aubrey would be able to use them for quite awhile, but she can and has been for awhile.  Earlier this year, I started making them with little ribbon tabs so that my big kids (Ella 3yrs) could open them herself and added a gusset at the bottom so they wouldn't spill all over.  Success for her and Aubrey.  Aubrey even seeks them out in the diaper bag to help herself to a snack whenever she wants!  It takes her all of about 5 seconds to open them up now...depending on how new the velcro is:)  We are so proud of her strength and determination...but just be sure the reward is worth the work, because if she finds a snack that is not what she wanted...SHE WILL LET YOU KNOW!  Kid has her favorites:)

I love how she sets it up on the floor for herself so that it stays open:)

Giveaway:  I am giving away some of my snack bags to help others with their fine motor skills and to celebrate Aubrey's accomplishment.  

There will be two winners chosen.  Each winner will receive a large and small snack bag in pattern of their choice!   These are some of my choices, but there is a lot more fabrics and bags in The Umbrella Girl Shop.

Anyone in the continental united states that reads this post can enter.  (not just people who have a child with Ds)  Just leave a comment  about which bag you like the best and you will be entered.  I like to make it easy:)  

Giveaway ends on Friday, October 15th at noon CST.  Winner will be announced sometime Friday night.

During October, I am donating 10% of all my sales to the National Down Syndrome Society, so if you haven't started thinking about Christmas gifts already, now is a great time.  I'm adding new designs and fabrics all the time...and it supports a good cause.