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'!

No More Snow!

We have officially run out of things to do on snow days.  There have been so many this year that I believe my children are actually looking forward to school.  Yesterday's example of a mindless snow day activity involved superimposing Ronnie's face and the face of his friend, Raheim, on Iron Man and the Hulk.  Spring, please please hurry up and get here....

If It Quacks Like A Duck...

I recently received a bill from Jessica's group home for cable TV services in excess of the basic 99 channel service.  Although the group home company had been paying for the extra service for years, it was recently decided that residents would now be responsible for the extra $20 a month.  Unfortunately, Jessica does not have the extra $20 a month from her SSI payment.

When I quizzed the group home manager why Jessica needed all the extra channels, she told me that the staff usually had Jessica watch TV in her room rather than in the common area (where the TV does have extended cable).  Upon further questioning, I was told Jessica was encouraged to watch TV in her room because if everyone was in the same room, agitation and aggressive behaviors would be seen in many of the group home residents.  The staff's solution to avoiding those negative behaviors was to isolate some of the residents.  That doesn't sound like a positive approach to behavior management...in fact, it sounds like seclusion, bordering on restraint to me.

Seclusion and restraint refer to safety procedures in which a person is isolated from others (seclusion) or physically held (restraint) in response to serious problem behavior that places the person or others at risk of injury or harm.  My concern is that these procedures are prone to misapplication and abuse place the group home residents at equal or more risk than their problem behavior.  To break it down further, I am concerned that:

• Seclusion and restraint procedures are inappropriately selected and implements as "treatment" or "behavioral intervention", rather than as a safety procedure.
• Seclusion and restraint are inappropriately used for behaviors that do not place the person or others at risk of harm or injury, for example non-compliance, disruption, or threats.
• Residents, peers, and/or staff may be physically hurt or injured during attempts to conduct seclusion and restraint procedures, and that the resulting injury will be attributed to the negative behaviors of the resident - Jessica, in this case.
• Risk of injury and harm is increased because seclusion and restraint may be used by staff that are not adequately trained.
• Use of seclusion and restraint may inadvertently result in reinforcement or strengthening of the problem behavior.  I strongly believe this is the case with Jessica.
• Seclusion and restraint are used independent of comprehensive, function-based behavioral plans and positive behavior supports.

I agree completely with the group home manager that Jessica can present with negative, sometimes aggressive behaviors.  I know that other residents in the group home also present with similar behaviors.  But is isolation/seclusion the best response in such a situation?  Or is it being used just because it makes life easier for the staff?

I think I know the answer to that.....

Leading Our Communities

Being a parent comes with a lot of responsibility.  Being a parent of a child or children with special needs brings even more responsibility, but until a few days ago, I hadn't thought of one particular area of responsibility - teaching and leading our communities to a deeper understanding and acceptance.

Often it seems easier to just stay home than to face the difficulties presented in our communities.  We have to worry about accessiblity, about the stares or looks of fear/disgust, or keep ourselves from getting angry if someone so obviously moves away from our children as if they are afraid of catching something.

We have to figure out logistics - where is there a restroom that is big enough to accommodate a wheelchair? - will a restaurant provide the type of food my child will eat? - how do I move around the mall with all the equipment my child must travel with?  And what happens if it rains or snows or is icy or is too hot or.....?

Then we have the physical requirements involved in going out into the community - will my vehicle hold my child's wheelchair? - can I lift it and him/her in and out of the car without hurting myself? - will there be adequate handicapped parking? - and are all the travel surfaces wheelchair friendly?

It often seems like a short trip to the grocery store requires an hour of planning and preparing!

But if we don't go into the community with our loved ones, we are doing a huge disservice not only to them but to all the people whose path we cross.  People whose lives have not yet been touched by disability need to see that our loved ones do not need to be locked away, kept out of the community.  They need to see the love, the patience, the fun, and most especially the value of people with disabilities.  They need to not fear disability.  They need to understand that everyone has bad moments, not just people who happen to have a disability.  They need to see and experience the supports that we provide so they can learn to provide the same things.  They need to see that our loved ones who happen to have a disability are so very important to us and others.  They need to learn that disability is a normal part of society and not something to be feared or avoided.

As parents we are responsible for helping our communities understand all this.  It's not easy sometimes, and it's not like we have lots of extra time for this, but we must.  We must do everything we can to make the world a better place for our families and for all people with disabilities who come after us.  I refuse to let my children be isolated or excluded from any part of life whether it presents difficulties for me or not.  They deserve it, they have a right to it, and I intend to see that they enjoy and participate fully in whatever aspect of their communities interest them.  It's another of my responsibilities, and one that I am happy to carry out!

Special Exposure Wednesday

Spring really is coming!  Given all the snow and cold weather, I had my doubts...but my baby tulips tell me otherwise!

Communication Is Not Just Words

Ashley is deaf and uses sign language to communicate.  She does not speak any words, but that doesn’t mean she is quiet!  She has an entire repertoire of sounds, and once someone gets to know her, the sounds can be interpreted as easily as words.  So it really saddened me when she was sick recently, and the sounds stopped.

It was one of my first indications that she was getting sick.  I didn’t hear the cheerful chattering noises early in the morning just before she gets up.  And I didn’t hear the lower pitched uttering indicating that I had chosen the wrong shirt for her to wear that day.  I didn’t hear the rhythmic ‘ahhhh ahhhhh’ as she rocked herself to sleep, and I never once heard the ‘aye yu huh’ that means ‘what the hell?’ (quite a common phrase Ashley uses J

Our non-speaking children tell us so much even without the use of words.  And as much as I would love to hear a word every now and then, the sounds Ashley makes are the music of my days.  I’m sad when the music stops…

One After The Other

I go back and forth about this - is it easier to be sick and have well kids, or have sick kids and be well myself?  Or is the worst thing to be sick AND have sick kids?  I don't know the answer, but I do know that the last two weeks have been hell around our house.

First I was very sick with norovirus.  Because of my compromised immune system, I don't get a little sick.  I get in the bed, have a hard time functioning sick.  From a Thursday to Sunday, I couldn't keep any food down, and struggled to stay hydrated with Gatorade.

On Saturday of that week, Ashley woke up vomiting.  I expected a really tough time for her, but 36 hours later, she was pretty much back to normal.

Tuesday, the following week, the norovirus got Ronnie.  He seemed to be the least sick of all of us, but since it hit his intestinal system hard, caring for him (including a LOT of cleanup) was horrible, to say the least.

Then Thursday of last week, Chip got sick.  Since he must have a similar genetic makeup as I, it's hit him pretty tough also.  It's now Sunday, and he is still battling nausea.

So, to answer the questions I posed at the start of this post, it's been really hard to have everyone sick CONSECUTIVELY.  And being a gastrointestinal virus versus a cold-type virus just increased the level of difficulty.

Needless to say, I am really, really looking forward to Spring - open windows, warm breezes, and fewer sick people...

You Know You've Always Wondered

How does a blind person use the ATM?



How does a blind person use paper money?

Never Again

It makes me so angry when something that was really good is turned into something really bad in the name of business.  It also makes me very angry when people do things, negative, hurtful things, to my children.  Both of those things happened yesterday, and I am still fuming.

Ashley is a very difficult person to draw blood from.  She has had so many medical procedures in her life, and as a result, many of her veins are collapsed or damaged.  But because of her medical needs, drawing blood is at least a quarterly event.  Having accompanied Ashley through her many medical interventions, I know what works and what doesn’t work when it comes to drawing blood.  I know where her best veins can be found.  I know the best time of day to attempt a draw, and I know how to make sure she is well-hydrated to help the process.  However, when she was younger, I found that a lot of phlebotomists felt they knew best – even though they didn’t know my daughter.

As a result of that, we would usually end up at our local children’s hospital for blood draws.  Unfortunately both the hours of operation and location of the hospital often made it difficult.  But one day, Ashley’s neurologist suggested a new lab, a small lab at the time that was new to our area.  We tried it, and he was correct, it was great!  So great, in fact, that I did a blog post about our visit and sent the link to the company.  Take a moment and read that original blog post so you will be able to put the rest of this story in perspective.

Things remained good at the new lab for several years, and then….a new company bought them.  Now take a moment to go read this blog post that I wrote after the new company was in place.  Yesterday, we went back to the lab, again for a blood draw for Ashley, and the experience was very similar to that of last year.

The same tech was working.  She said she had no one to assist.  She said I would have to provide someone.  She refused to touch Ashley, and told me to restrain her.  She was rough when holding Ashley’s arm while looking for a vein.  She got angry when Ashley wouldn’t hold a squeeze ball.  And the whole time, she wouldn’t speak or even look directly at Ashley, opting to shout orders at me instead.  She kept saying she didn’t want to hurt ‘the patient’, but I don’t believe that was really what was meant.  I don’t think she even wanted to try.  When I finally got Ashley’s hand restrained and in the correct position, the tech immediately went for her needle.  I let go of Ashley’s hand and asked why the tech had not wiped the hand with an alcohol wipe.  She finally did, then stuck Ashley, and even to my untrained eye, I could tell it wasn’t anywhere near a vein.  I told her to remove it.  And of course, Ashley was sobbing throughout the whole debacle.

I was angry and loud and the tech never, ever got the point.

So, Solstas Lab Partners, we are done with you.  I plan to share my opinions as to why with anyone and everyone I can, including the management of your company.  Your company probably won’t care, but I care too much to ever let any family member of mine be disrespected and hurt by your staff ever again.  Things were wonderful with Carilion – things are worse than horrible with Solstas.

Special Exposure Wednesday

This dog toy, its eyes peaking up from yet another winter storm in our area, is as sick of snow as I am.