Shoes, Racing, Games and Cake!

I was quite an exciting weekend in the Nickerson household!

Ronnie competed in the Monument Avenue 10k race, and came in 2nd in the wheelchair division.  His picture was even in the paper!

 

Saturday was Ashley's 19th birthday.  I still can't believe I am writing that number!  Take that all you doctors who never believed she would make it past her 2nd birthday...

Ashley is a master of dragging her birthday celebration out for several days.  First, after school and a visit to the doctor, we went to the Mall and she tried on shoes (more Converse, of course!).  On Saturday, we celebrated with a trip to Dave and Busters, and that was followed by her cake.  She was mesmerized by the candles and loved loved loved the icing flowers!

Then Sunday, she asked for pizza for her birthday, which of course she got, and that was followed by more cake.  It was a great weekend for all of us!

 

 

 

No Easy Answers

Ashley is a very medically complicated person.  She has deafblindness, epilepsy, brain tumors, ADHD, feeding issues....and after our visit with the endocrinologist yesterday, suspected hypothyroidism.

Hypothyroidism in and of itself is not difficult to treat.  I know because I was diagnosed with it over twenty years ago as a result of Graves Disease.  I take a daily pill of synthetic thyroid hormone, and as long as the dosage is calculated correctly, all is good.  However, the doctor suspects Ashley's thyroid issue is a result of the seizure medication she takes.  The synthetic hormone may or may not work in her case, and may or may not cause other issues.  And, she must continue to take the seizure medications.  As usual, there are no easy answers when it comes to Ashley's medical treatment.

The endocrinilogist has ordered some additional blood work, and until I let him know for the third time that Ashley was adopted, he had also ordered some genetic testing.  Also, since hypothyroidism results in weight gain (the reason that brought us to the clinic in the first place), the doctor also wants us to consult with a nutitionist, the first appointment for whom was not available until June.

I've wanted to meet with a nutritionist for  a while now, but it does scare me a bit.  Ashley has a very narrow range of foods she will eat by mouth.  Until she graduated from our children's hospital feeding program, she was completely tube fed, but for the last 10 years or so, she has survived on that narrow range of food with supplemental tube feedings of blenderized fruits and vegetables.  What scares me is that the nutritionist may suggest more tube feedings.  Ashley has worked so hard to eat by mouth and I really don't want to regress on that.  But, for her health, we do need to keep her weight gain in check.

So yet again, there are no easy answers.  But I guess that is what makes my beautiful, special girl so unique!  This weekend we will be celebrating her 19th birthday.  At age two, her doctors predicted she wouldn't live to see age 5.  So, I'll take the complications because they sure seem
to be working so far!

(p.s.  that is NOT Ashley's tummy pictured above - it is just a picture of a g-tube site)

Special Exposure Wednesday

Just 3 more days until Ronnie competes in his first road race.  The Monument Avenue 10k is this coming Saturday, and Ronnie has been training hard.  I don't think he will have any problem at all!

Purely and Simply, A Work of Art

Each year, SPARC - the School for The Performing Arts in the Richmond Community sponsors Live Art.  Live Art is a groundbreaking, inclusive arts education program for students of all abilities (with and without disabilities), culminating with a major public concert featuring these students and prominent headlining musicians. Students involved in the program participate in a series of cross-pollenated arts classes that include training in dance, singing, visual art, American Sign Language, mime work, playing musical instruments, visual technologies, spoken word and more. All of the classes combine two or more art forms within a new and unique curriculum that ensures all students will experience a challenging and rewarding semester of classes. The culminating event of this program is a life-changing performance in one of Richmond's largest and most prominent theaters, the Altria Theater. During this performance, world-renowned musicians join the students in a major music concert during which the students perform acts of live art.

Watch this video about Live Art - you will be very glad that you did!

A Mom Asks For Advice

A mom to a preschool-aged child with disabilities has asked me to poll you, dear readers, for some advice.  I have never met either the mom or the child, so the descriptions below are shared from the words of the mom and the child's nurse.  If you have any advice or suggestions, they would both be most grateful!

The child, a little girl who is preschool aged and does not have a definitive diagnosis, is non-verbal, developmentally delayed, uses a few signs she made up herself, and with the help of school staff, is being encouraged to use a PECS system.  The child has a g-tube and is fed almost exclusively through it.  The mom and nurse will encourage the girl to eat by mouth, but the results have been disappointing so far.

The girl is used to having her every need met, even before she realizes she has the need.  Her mom describes her as having no patience whatsoever.  The child doesn't play with toys much, but rather spends a great deal of time in front of her favorite TV show.  When not watching TV, she likes her nurse to sing her favorite 5 nursery rhyme songs over and over and over...

Going out in public is very difficult for the child, the mom and the nurse.  Even a trip to the doctor's office results in a major meltdown if there is any wait time involved at all.  Shopping trips are the same, and eating out in restaurants is impossible.

The nurse and the mom feel enslaved by the child, and want desperately to expand the child's horizons.  But they don't know how.  When they have brought the issue up with the pediatrician, they tell me the pediatrician says to just force the child to go out more and eventually she will get used to it.  But the mom and nurse don't like that approach.

So, they are both asking for advice...and that is where you come in.  We all have so many years of experience with our own children, and both are hopeful we can draw on that experience to help them.  They said to tell you thanks in advance!

Systems Unchanged

Soon after I adopted Ashley 17 years ago and began my journey into the world of special needs, I decided to work as hard as I could to make things better for her and other children with disabilities.  I served on advisory councils for organizations supporting children with special needs – I was on steering committees whose goal was to make the educational experience better for those children – and I presented on the subject to anyone who asked me to.  The main theme I heard from all the experts in the field was ‘systems change.’

To make things better for children with disabilities, we needed to affect ‘systems change’ – change in our educational institutions, change for medical professionals, and change for all the other people who provided support to our special children. 

I bought into that concept for many years – thus the reason I always agreed to serve on those advisory councils and steering committees.  I truly wanted systems to change – I wanted my daughter and others like her to get the education to which they had a right – I wanted doctors and nurses and therapists to understand my family’s challenges and adjust their thinking on support – I wanted any ‘system’ with whom my child had contact to respect her, challenge her, and believe in her.

Sadly, those 17 years have passed and I haven’t noticed or experienced any significant systems change.

But that doesn’t mean that everything has been bad for Ashley.  Yes, the elementary and middle school years were bad, but high school has been wonderful.  Since I haven’t really seen any systems change (my school district is back to sending all the deaf children to the same school, all the children with autism to the same classrooms, etc.), I wanted to figure out why things have been good for Ashley in high school.  And I think I have.

We haven’t affected any changes in our systems as a whole, but what we have done is touch the hearts of some of our teachers, and in the process affected positive change in that way.  What has made the high school years great for Ashley and for my son, Ronnie, is that they have teachers who believe in them, teachers who want them to succeed, and teachers who are willing to go that extra mile to understand their unique learning needs.

I no longer serve on the advisory councils and steering committees.  I have very few conversations with the ‘systems’ and organizations that support my children and other children with disabilities.  What I do have in open, honest conversation with my child’s teachers.  As a result, the teachers also do not see a ‘system’ of children in their classroom – they see individuals with unique qualities – individuals that need to be taught in individual ways.  They see Ashley…and Ronnie….and all the other children in their classrooms and they are committed to doing the best job possible for those students.

That, dear readers, is positive change, change that will make a wonderful difference for my children and the children that come after them.   While I want my children to be seen as individuals, I believe teachers also want to be seen as individuals, not lumped into systems which may be flawed, but unique individuals who want what is best for their students.  Those teachers will be the ones who lead our systems forward, and I am so very grateful to have met some of them!

Special Exposure Wednesday

An Ashley 'selfie'!