31 for 21, Day 3 - 2012

31 for 21: day 2, 2012

I have a lot of catching up to do.  I have a ton to fill you in on Ms. Maya.  My intentions were good this summer, I was going to post about all the fun stuff we did.   In the end even Maya's birthday did not get posted.   No excuses now that it's October.    So here goes...

In July, one day we went to the children's museum with some friends.  I asked Maya's respite to come along to help.  Maya adores her and they are almost like big and little sisters.  We haven't been to the museum in a long time.  That one especially is huge and most of the activites are better when the child can play on their own.  I can't remember how old Maya was when we went last, I just remember all the other kids were having a ball and Maya was mildly interested.  I don't think she was even walking then, which makes a huge difference.

Anyway, Maya was so excited to be there this time.  As soon as we entered she took off towards the huge structure that is all about climbing.  It's like a huge maze up in the air.  I should preface this by saying that Maya has struggled for a long time with climbing jungle gyms.  In past posts I've written about this.  I've chalked it up to sensory issues, but basically she doesn't like walking up ramps that have holes in them.  She sees through the ground and I think it confuses her.  Well this structure is all about holes and seeing to the ground.

Every time this girl does something, it surprises me, but not in a shocking way.  It's almost like I expect her to surprise me.  So when she does something like forget that she was afraid of walking up ramps, I think it's just the way it's supposed to be.  She walked up, crawled and climbed (with the help of her respite), not once, but twice up that structure.

We spent over 4 hours at the museum and at the end Maya was crying because she didn't want to leave.  It was crazy, because she NEVER cries for a thing like that.  In fact usually if there is too much going on, she turns to me and says "bye" which is her signal that she wants to leave.  This time she was having so much fun playing with all the different activities she didn't want to go home.

Last time we didn't venture into the art room, and this time we spend at least 30 mins there.  She was just so content painting the rocket ship (see photos below).  Give that girl a brush and a big rocket ship and I guess it's all good!

It was so wonderful to see her engaged in all that was around.  She even played with the her friends that came to the muesum with us.  They arranged flowers in this one section for a little while.  Once they moved on, she continued playing on her own for a long while. At least a long while in "Maya" terms.

I kept thinking to myself that I felt bad that she had missed a therapy that morning.  Then I realized that this whole experience was way more therapeutic than any 50 min therapy.  Sometimes you just have to play hooky and enjoy life!  It was good to be reminded of that.

Maya crawling through a tunnel on the high structure.

Walking on the structure with her respite.

Painting the rocket purple.

Rocket ship painter.

Aarranging flowers on the table.

Moving flowers from the garden to the table.

Planting the garden again.

Hand and eye coordination needed to garden here. 

 

31 for 21: Day 1, 2012

Yes, it's that time of year.  October is Down syndrome awareness month.  In honor of which, I try and post on this blog everyday this month.  I have to be honest, every year it gets harder and harder to do this activity.  It's been especially hard to find the time to post in general.  I think I'm either exhausted from the day or I have other things that are just more pertinent.   I love to read other people blogs that have such eloquent words and ideas to convey.  Me, well I'm a little rough around the edges.

Nevertheless I will try my best to post something during this month.   Although it might seem we only celebrate Maya's life here during October (because I write the most during this month).  I live with this extraordinary being and experience everyday the amazing strides she makes.  Sometimes she takes a step back here and there and this is also part of the journey.  Down syndrome awareness doesn't just happen in October for us.  It happens 365 days of the year.

On that note the most amazing things have been happening these last couple of months.  Maya is finding her voice.  She has started to say words, not just sign them.  She says,  go, eello for hello, up, uh oh, bye, hi,  eedy, for ready, o or no, es for yes, on a daily basis now.  The words are starting to add up.  I'm having so much fun listening to her.

Just a couple of days ago, she tried to say I love you.  In her sweet little voice, she said, "i oove ou".  It was so precious. I have been waiting to hear that for so long.  It's true I had to prompt her, but the fact that she is trying to repeat words that I'm asking her to say...well let's just say it is amazing!

Since Maya is starting to repeat words, now you can almost do what you would do to a one year old, act like you are talking to them.   When they babble, you say, "yes, oh really?  uh huh."   Today I heard our respite do that with Maya.  It was the first time I've heard someone talking to her like that.

Some might ask, did you talk to her all this time?  Did you encourage her to say words?  Has the sign language gotten in the way of her progression?  The answers are yes I spoke to her, I encouraged her countless times, I sang to her, I asked her to sing to me, I told her use your words, say this, say that.  As for the sign language, well, I don't think it's gotten in the way.  I think it's helped us all get along better, she can communicate to me, to her respite without throwing a tantrum.  

Sometimes it's not just what we do to push them along, it's when they are ready to make that step, when they do it.  Of course the therapy is priceless, but I know Maya, and when Maya is ready that is when she makes her move.  At that time, like all other children, she shines.

Wordless Wednesday: jammin'.

wordless wednesday: my artist

 

the little things...

Today I was walking with Maya to her music therapy. She was walking right next to me.  I held out my hand and she immediately grabbed it and held onto it.  At that moment I remembered when there was a time when she would not hold my hand while walking.  In fact she would often not walk next to me at all.  That wasn't that long ago actually. Now don't get me wrong there are still many times that I have to carry her, but those times are slowly disappearing little by little.

That moment made me think of other moments that are changing with Maya.  The other day she sat to put on her shoes and when I said put them on, she tried to slip her feet in her crocks.  She was almost there.  After months and months of trying to get her to put her shoes on, she is starting to try.  That is a big step for her.

The biggest step we have taken happened last week when, on a whim, I decided to pull up the rugs in the house and put Maya in her undies.  I am uncertain if she is ready, but I lean towards thinking she is on the verge of a breakthrough.

Since she was 13 months we have been putting her on the toilet and soon after that she started to sign potty and actually poop and pee on the toilet.  Set backs of illness, mine and hers and laziness on my part stopped me from pushing her further.  Still, since 15-16 months she rarely poops in her diaper.  It is however a struggle to get her on the toilet, sometimes she arches her back or just doesn't want to go into the bathroom.  Worse, when we are out she refuses to go potty if she doesn't have her cushy toilet seat.  I have to say though, that since last Tuesday she hasn't refused to go to the bathroom.  She gets on the toilet even if she doesn't go potty.  And she's had a few accidents, but most of the time it's been very successful.  The first day she went 7 hours without an accident.

Like most things in my life I consider this an experiment.  I heard of many techniques for potty training but in the same fashion as sleep training I have decided to take it slow and ease.  I don't know how long this process will go on, I just try and keep my expectations low and so far I'm feeling pretty good about the whole thing.  Low stress for me and for Maya, this is a good thing.

These are the little things that matter in my life right now.  It might seem trivial to some but to me, it is what my world is comprised of at the moment.  I am so proud of my little rascal. 

Bring on the rain!

Breakthrough!

Over the last few months we have been working hard at Maya's speech.  At times it's been hard because there has been little to no progress.   It's hard for me not to worry now that she is 4ish years old. We have been paying out of pocket as well as having the state provide therapy.  The diagnosis of Apraxia has really helped us work with Maya in a totally different way.  She just wasn't responding to the typical way of working with speech therapy, the visual hand cues has really done wonders.

I'm writing today because I am listening to Maya try and pronounce words.  This feels like a miracle.  Before she didn't even try.  It was like pulling teeth to get her to get her to say B.  She responds so much better to music.  But now, I hear her trying to say words like Broccoli.  Without any prompting.  Wow!

The other day she was watching Elmo, the scene was winter, and Elmo was wearing a jacket.  She turned to me and said "Cooooold"   And signed it at the same time.

I couldn't believe my ears, so I asked her to say it again, and she did.

Sometimes I forget how resilient she is.  She adjusts to change so easily.  Unlike myself.  We have gone through so many changes in the last few months, different music therapists, new respite, saying goodbye to her sensory OT and having a new one work with her.  Yet through all this, she is growing.

In the last few weeks I've seen a breakthrough.  The words are there.  She is trying.  They aren't
perfect, but she is using her voice.  And her voice is amazing!