Progress being made, but a sad day nonetheless

Today was our very last appointment with Marisa's lovely and wonderful OT.  First I'll state the progress portion of this post and then write about lovely Laine.  I wanted to give Laine the OT a keepsake made by Marisa.  I had some butterfly cardboard cut-out shapes, gluesticks, and squares of tissue paper.  I gave that to Marisa and also gave her a pencil to write her name and "from" on the back of the butterfly.  We sat down and I told her each letter to write, so F, then R, then O and so on.  Normally I would write the letter above and let her copy me below.  She doesn't trace over letters anymore but rarely does she write them spontaneously yet.  This time I just said the letters and she wrote them.  I'm so excited about this!  Writing her name has been an uphill challenge.  I won't say "battle" because she genuinely wants to do it but has struggled with it for a long time now.  So when she wrote the letters just at my saying them, I was thrilled.   When she was in public school briefly last fall (approx. 2 months), every day they wanted her to come in, get a pencil, sit down and write her name.  I kept telling them she wasn't there yet and that she would probably get frustrated with that task until she could master it on her own.  They finally acquiesced (ha!), and gave her a piece of paper with a capital M to start off her name.  Well, not surprisingly, she still was unable to complete that task.  The teacher did sit with her often to help her, but Marisa was just not ready yet to be able to write her letters independently.  It has taken months, working with me most days, to achieve that goal.  When I say this, believe me, I am not sad about that or comparing her in a negative way to other kids.  I am VERY proud of her achievements this past year and excited to see where we can go with the skills she has attained. 

Back to the OT.  This charming young lady has been in our lives for quite a while.  Her mother is also an OT with a local school district, and the family are members of our church.  I met her mom when Marisa was around 2 years old and she told me her daughter was available for babysitting.  So I hired Laine off and on to take care of Marisa back then.  After that year, Laine went to graduate school to pursue a masters in occupational therapy.  Then, about a year ago, I saw her mom again and she told me Laine had her masters and was now working in a local clinic.  I was in the market already for a new OT, and jumped at the chance to add Laine to Marisa's "team."   Laine worked with Marisa twice a month for almost a year, and she did a wonderful job with her.  Unfortunately, all good things often come to an end, and Laine is moving to Washington state to begin the next step in her personal journey.  We are very sad to see her go.  She had a very special bond with Marisa and that will be hard to replace.  The good news, though, is that Marisa has come a very long way in developing those fine motor skills.  She still has trouble with scissors but her writing and drawing are getting better, and her desire to work on fine motor tasks has improved as well.  All these things we adults, especially "typical" adults, take for granted, are hard won by our kids.  These are huge successes and it is nice to share them with talented, kind, and supportive therapists like Laine.

The best intentions, plus a road trip

I really did have the best intentions to post regularly on this blog, and to add pictures.  Oh well, the days just continue to fly on by.  Maybe, just maybe, if Marisa is successful in the first grade at her new school (Lord, just a wee little prayer request!), I can spend more time on this.  I am hoping to finally go through the piles and piles of printed out articles on Down syndrome, inclusion, behavioral support, advocacy, etc., etc., lying on the dining room table, in huge 3 ring binders on the book shelf and covering the desk in the kitchen.  Well, it's not quite that bad, but close.  The good news is that there are tons of resources out there and most are very useful.  The bad news is that I rarely find the time to actually sit down and read any of this stuff anymore.  But, then more good news is that one of the reasons I rarely find that time is that we are usually out and about, living our lives, with my darling child out in the community and mingling with "typical" peers at parks, talking to all sorts of people at the dog park, and hanging out with her sister and her friends.  It means that she is being "included" in our life and in the life of the world around her, and for now, that is the most important thing. 

The other part of this post is a reflection on the trip my older daughter and I took this past weekend.  We drove to Ashland and attended a play at the Oregon Shakespeare Festival.   This was our first time and definitely won't be our last.   She even suggested the trip a while back, and after I got up off the floor when she made the suggestion (she is 14 after all), I jumped at the chance.  My husband and I moved to Oregon from Massachusetts way back in 1991.  I read about the Shakespeare Festival that first year and had wanted to go ever since.   It is so nice to be able to check off your personal list of things to do something in the back or your mind for years.  And, the trip was definitely worth the 5 hour drive listening mostly to songs my daughter chose or letting her watch something on her portable DVD player while I drove in silence.  It sure would be nice sometimes if she and I shared the same musical tastes, but we don't tend to do that. 

We stayed in a B&B a short walking distance from the theaters.  The Innkeeper was lovely, our room was cozy and nice, and we even lucked out in having our own private bathroom.  Nadia was not keen on the breakfast part of the experience when she realized we might have to talk to other people, but she survived the experience.  She is not the social butterfly her sister is.   We spent the days walking through a large city park, shopping in a bunch of nice boutiques in town and trying out different, and all very good, restaurants.  We saw Twelfth Night in the outdoor Elizabethan Theater, and it was very well done.  Our tickets could have been better, but next time I'll know to snatch them up earlier in the year. 

This is the third Mother/Older Daughter trip she and I have taken since Marisa was born.  I took Nadia to Chicago in 2005 to the NDSS Conference, and we had a grand time there.  Then a couple of years ago we took the train to Seattle and spent 3 nights in a hotel across from Pike Place Market.  All in all that was a good trip, and we got to do several fun things, but Nadia came down with a nasty cold soon after we got there and shared it with me.  By the second day we were miserable, but we still look back on that trip fondly.  Marisa and her Daddy have a grand time when we're gone and I know the time Nadia and I spend together is priceless.  She is a freshman now in high school so we don't have very many summers left before she flies the coop.  I want to spend that time wisely, and as often as possible, on the road.

Added layers of complexity

The title of this post refers to how I describe life with little Miss Marisa.  In so many ways she is just like most other kids out there, silly, affectionate, curious, demanding, and above all deserving of love, honor, and respect just like every other human being.  Where she starts to diverge from the "norm" is in that everything we do requires a little or a lot of thought before hand and often times a great deal of planning. 

When Marisa came home from 56 days in the NICU, she came with a G-Tube and 8 medications.  The meds covered the gamut from Synthroid for hypothroidism, which she still takes daily, to Septra to prevent a kidney infection, Zantac and Reglan for reflux & other GI issues, Prednisone for adrenal insufficiency, and 3 others I can't recall the names of or needs for right now.  I'm counting that as a good thing!  Over time the list of medication names, dosages and times to administer, stuck with a magnet on our fridge, got smaller and smaller until we finally whittled it down to just the Synthroid.   Our visits to the various specialists in the medical community and back and forth way too often to the pediatrician's office have whittled down too.   I am thankful that, at least for now and hopefully for years to come, we spend more much time away from the hospital and waiting in clinics all over town than we spent in them years ago.   But, I am also mindful that that is not the story for many kids and their families, and pray often for them. 

At 7 years old, Marisa is out past many of the initial medical concerns that plagued us in the early days.  Her G-Tube is long gone, we don't have a neurologist's business card anymore, and the cardiologist who last saw her when she was 2 years old, is just someone from our past now.  I pray every day that she does not develop Leukemia because I know that would return us to the world of many of the specialists we saw before.  They are all truly wonderful people, all of whom treated us and above all our precious child with kindness and grace; but we will be just fine if we never see them again.   Last year we were told Marisa could be considered a "graduate" of the Hematology/Oncology clinic at the hospital from her NICU days, but then we had a bit of a scare this spring with blood counts and she was put back on their rolls.   So back she and I will go next March near her birthday for an annual check-up once again. 

Although I am so thankful and grateful that most of her medical concerns have become distant memories, it would be nice to move on as well from several behavioral challenges.  I am hoping that as time goes by we can look back on these days, that all in all are pretty darn good, and be happy with how far she has come.  I am hoping to move beyond having to inform every new person in charge in every new situation about her quirks and her M.O.  I am hoping to be able to go out with her all over town and not need to either bring "back up" or make sure I have on running shoes so I can chase her down when her need to run kicks in and she is off down the street without warning.   I long for the day when I do not have to admonish her over and over and over again all day to do or not to do something.   I do believe that day will come, but can't see that proverbial light just yet.....  I do have faith that we will get there, though, and one day I will see this as time well spent, teaching her how to live and to be in community with the rest of the world, just as she and all other people with disabilities deserve. 

Repetition

Where does the time go?  I can't believe it's already the first week of August.  I always start out the summer with so many plans and expectations, and still the time just seems to fly on by.  When I started homeschooling Marisa I had a deep dread that our days would drag on and that I would feel lonely being home most of the day and spend my time looking at the clock and waiting until her Dad got home to make a much needed break.  Well, that didn't happen at all.  Our days flew by then too and I'd get to the end of the day and realize there was so much more I wanted to achieve within that particular block of time.  I am not the most organized person, and I know I could use some major help with time management, but we did still manage to get many  things done and keep making some semblance of progress.

The title of this post is "Repetition" because that is a fact of life that is even more relevant and necessary in educating our kids than what is needed for the "typical" student.  I knew I wanted to get back on track with our homeschooling activities during the summer so Roo would be able to retain what she had learned and use it when she goes back into the school environment in September.  We took many weeks off while pursuing other activities that kids do in the summer months - park visits, swimming, camps, etc., etc.; and now I'm trying to get serious about school work once again.   The problem with taking that break, and I did suspect it would be a problem but still went full speed ahead into other activities, is that we now have to go back a few steps and work on some skills that she had mastered but now struggles with again.  This is a known factor with our kids, and I need to not get frustrated, but it is hard to work day in day out on something, get it down, and then have to go back again instead of moving forward.  I know this is not uncommon with lots of "typical" kids, especially in the early school years, but I sure would like to be making progress at a slightly faster rate. 

That being said, I am still extremely proud of little miss, and know that she does try hard and wants to learn new things.   I am hoping/praying that the aid the school hires to work with her will form an immediate bond with her and figure out how to get her to work at her best level.  I've seen great things with my little Roo, not that I'm biased (!), and want her to show the world just what she can do.