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Go, Team Alice!

On May 1st, I'll be running in my first 5k to support a program at UNC called TelAbility.  I've created a team, aptly named Team Alice, to help raise funds for this worthy cause.  Check out Alice's page here


Reason 548 Why School Rocks!

     (Click picture to enlarge)


Speak To Me

Communication and eating continue to be major points of focus for us.  I have complete faith that Alice will attain both of these skills, but not without the help of a lot of people.  Alice is the one who works the hardest, always, but it also takes a lot of effort from other people to provide the exposure and repetition necessary to firmly imprint these patterns on her brain.  Eating is coming along, slowly.  We are in the process of hiring a part-time aid for Alice and my hope is that he/she will be able to help me at home with eating.  Alice’s OT at school recently started using one of their sessions to practice eating (“tasting” may be more accurate).  Now Alice goes to the cafeteria along with the other kids during lunch time to have a “taste session.”  This is a huge deal because for a while, even a strong odor would bring on a gag and/or vomit.  So far, it’s going great, and I love the idea of her getting to experience the social aspect of cafeteria time!


In the realm of communication, Alice continues to make exciting steps towards being able to express her wants and needs.  Again, progress would be very slow if it weren’t for the effort of people beyond our family.  Thankfully, all of Alice’s people (or as I like to refer to them, “Team Alice”) recognize Alice’s potential and are always on board to try something new, especially if it means bringing Alice one step closer to expressing herself.  Recently, Team Alice came up with the idea to pass a Little Step-by-Step (SBS) switch back and forth, for a few reasons.  The SBS has three different levels that can be programmed with either a word or phrase, or a sequence of phrases that Alice can trigger by whacking the button.  When we’re at home, we decide on a few things that Alice wants to share with her class then program the SBS.  When she arrives at school, she has her button on her tray, ready to “talk” with one of her peers or her Big Friends (i.e., teachers and therapists).  Once at school, Team Alice can program the SBS to help her participate more in school (e.g., “Adriana, come here!") or with snippets from her day, which we can then talk about at home.   Her classmates think the button is very cool and they like that Alice can talk to them.  I wish I could capture the look of joy on her face when she hits the button and gets a response.  She is really getting good at hitting the button and completely "get's it."  The button is also a fantastic way to bridge home and school, as well as another step toward giving Alice her voice!  Here are some recent sequences:


                Alice to her class:

(1)    Guess what I did?

(2)    I went pee pee on the potty this morning!

(3)    Yeah, and I flushed.  :)

This type of sequencing allows the other member of the conversation to ask questions, which Alice then answers by hitting the button again.  So it would go like this-- A: "Guess what I did?", B: "What did you do?  I can't wait for you to tell me!", A: "I went pee pee on the potty this morning!", B: "You did?  Wow, I'm so proud of you!", A: "Yeah, and I flushed.", B: "That's terrific, what a big girl!"

Class to home:

(1)    Today I had 5 bites of butterscotch pudding!

(2)    I played in the sand with my shovel

(3)    During nap time, Adriana and I laid together and giggled while we kicked our legs

This type of sequencing gives Alice a chance to tell us some of what she did at school each day.  We talk about each phrase individually, asking her questions which she responds to with very clear expressions.  You can tell in her face how excited she is to tell us about her day.

With all of the technology out there, there is no doubt in my mind that Alice will one day be able to communicate.  I know Alice has the cognitive ability and I know the resources are out there, but it’s that whole process of linking the two that seems so daunting.  I actually asked a mother I spoke to recently if teaching her child to use a communication device was hard.  Uh......... DUH!  What I should have asked was, how in the world did you tackle such an enormous challenge, knowing how badly you wanted it for your child?  I bet she would have said one tiny baby step at a time, and that’s what we’re doing. 

Alice in Midline

I took these pictures recently with my phone showing Alice holding a bendy tube toy with both hands, bringing it up to her mouth and back down again. She held on with both hands for at least 2 minutes. I dedicate these pictures to all of her therapists who will definitely appreciate the complete awesomeness of this.  She could not do this even six months ago!

I am only supporting her head with my hand and her body with my torso. I'm not touching her arms at all :)

Careful What You Wish For

You gotta be kidding me.

I completely screwed up my back today, about two hours after I said I wish I could pause life for the day to write.  Not quite what I had in mind, Universe.  This is really, really uncomfortable. 

Free Fall!


Whew, I feel like we’ve made it through another valley!  If I was hip enough to integrate animated movie clips into this journal, I would put the scene of Dorothy walking out of the woods and seeing the Emerald City off in the distance… “You’re out of the woods, you’re out of the dark, you’re out of the night!  Step into the sun, step into the light!”  That clip definitely captures how I’ve been feeling lately.  I have about fifteen entries started in my head and I’m trying to figure out how to share everything without writing a 10 paragraph entry.  For now, here are some quick bits of exciting news:


(^)  Isabelle doesn’t have to wear her harness anymore!  Because of the DDH, she’s been harnessed in some capacity for over a year.  We got the all clear recently from her orthopedist and she is now completely brace free.  He wants to see her back in another year but said that it is “very unlikely that any surgical intervention will be required.”  She is all over the place, jabbering like a monkey, perfecting the art of hugs and kisses.  She also growls when she sees pictures of bears, lions, dinosaurs… anything ferocious, it’s pretty adorable.


(^)  There is so much to report on how amazing Alice is doing, but for the quick and dirty I have to mention that Alice’s vomiting decreased significantly in the last month!  Over the last thirty days, she threw up less than five times.  In general, she’s been very healthy lately.  I can see that she is increasing her endurance and stamina for all activities, not just therapy related stuff.  School continues to be a miracle for us and I’m waiting for someone to pinch me because it seems too good to be true.  I couldn’t have created a better group of people in my mind to work with her.   


(^) I’m going on vacation soon!  Time again for what has become my annual solo mom trip.  This year I’m heading out west for CSUN’s  25th Annual International Technology and Persons with Disabilities Conference.  I’ll be attending the expo portion, which will showcase hundreds of different vendors of adaptive devices and products.  I’ll also get to catch up with some old friends and finally meet a handful of amazing people who I have connected with through this journal.  Back in Cali just in time for spring…what could be better?  Excitement-o-meter is maxed out!  Thank you to Al and my parents for making it happen!


(^)  Al is the man at work!  He’s been brought in on a ton of new projects over the last few months and presenting at conferences all over the state.  He’s been working a lot harder and in doing so, has become an integral part of the department.  He enjoys the work he is doing and is learning a lot about the future of online learning.  We are tremendously grateful since times are very uncertain for a lot of families.

There's so much more I have to be happy about and grateful for right now, I wish I could pause life for a day to write about them all.  Winter was really hard for me for some reason, but I can definitely feel a shift in the tides.  Today I am thankful for the special people in my life who make me a better person and mom. 

Scenes from School



Holy Smokies, Tom Petty and the Heartbreakers are coming to Raleigh!!  I haven't been to a concert in almost a decade, and I've always said, if Tom Petty (or Soundgarden reunion tour *wishful thinking*) comes to NC, I'm going to be there!  He's actually kicking off the tour in Raleigh!  Tickets go on sale March 3rd... I hope they're not a trillion dollars!!! 

(not one sentence in this entry doesn't end with an exclamation point, what does that say??!!)

Newborn Possibilities Fund: Helping Infants Go the Distance

Check out this exciting new program that seeks to help more families take part in medical research studies using newborn stem cells.  A worthy cause, indeed!