Tuesday, October 3, 2017

31 for 21: Spectrum

It is 31 for 21 season.  31 posts for the 21st chromosome.  Another Awareness.

As annoyed as I am with the concept of Awareness (you've all seen me say stuff on this), I like to at least make an attempt at the blog posts for Down Syndrome Awareness, because people like to learn during the "fun season".  Walks and festivals and celebration make learning easier and more fun.

When I started this blog, I was sad that there weren't more blogs on older kids.  As my own child grows older, I understand why there are less.

It's hard to discourage people.

It is hard to say, nope, no massive progression.  Again.  My kid, while making huge progress for HER, is still functionally non-verbal, because she is still struggling with word sounds and word progression.  She still speaks like she is a walking emoji and text acronym, mixed with debilitating stutters, and you have to really work to make sure you know her conversation subject matter, so any of it can make sense.

We won't even discuss tying shoes or self care.

It is hard to know that the damage Down syndrome does is a sliding scale with a spectrum of impact, and that sometimes, no matter the intervention and therapy, it's your child at the lower end of the spectrum.  It is hard to tell people with younger kids, that not only is it true in theory, but you have a super cute proof living in your house.  I'm not one to offer false promises, but I also don't want to be a Debbie Downer...constantly reminding them that sometimes intervention doesn't "fix" everything.  That you don't even want it to, you just want your child to not be trapped in their own silence.  While at the same time watching while others send their children off to real colleges, and real jobs...and not wanting them to give up hope.

It is hard to tell people who don't understand, who have kids that function within the spectrum of normal, that nope, your kid still isn't growing up.  That while they cry that their babies are growing up, yours isn't, and that is a thousand times sadder.

I have no real news, but I am going to try to offer her favorite subject matters.  So if you know us, you can understand her passionate subjects.  And if you don't know us, you can take a page out of this blog, as it were, and ask the parents of kids that you know that are trapped in their own worlds, where the doors are, so you can find a way in.  Because despite the static activity at our house, we still have the childhood magic of still believing all the fairy tales, of limitless imagination, and of not allowing reality to take any fun out of your day.

We believe that tiny creatures that live in plastic houses, have actual feelings and adventures.
We believe in Santa and fairies and Disney endings.
We believe in costumes that power imaginations.
We believe that crowns make supper more delicious.
We believe trampolines and swimming pools are still viable exercise programs, but don't call it exercise.
We believe sharks and crocodiles and sea monsters live in local lakes and do our bidding.
We believe that colored gloves transfer super powers.
We believe in anything we want.
Reality is completely negotiable.

And really, I prefer supporting the boundless creative, especially in the face of looming disability.  Because it is more fun, and doesn't change the narrative.  If you don't look into the face of a 2 year old and kill the magic, and just enjoy the ride, why can I not do the same with Elise?  So I do.

Sunday, August 13, 2017


Or one answer at least.

Scroll back one post for my frustration at Elise's exhaustion and the lack of response on the part of her medical professionals.

After three years, we stumbled onto at least part of the answer.

As a child with Down Syndrome, vision screening is an annual process, with specialists (as it is with everything).  So we go usually in February.  I was too tired to go then this year, so I got her in at the end of March.  She was tested and they decided that her vision was off enough to warrant glasses.  But not near sighted, as genetics would have caused us to suspect, but far sighted.  They arrived at the first of April.  She chose them.  Bright, neon pink.  I was floored, but decided that if pink would make them fun enough that she would choose to wear them, then I didn't care and she could have them.  They are called Rainbow Cookie by Dilli Dalli.  They are squashy and flexible and have a headband on the back to keep them snuggled up on her face.  She LOVES them.  They have a home on her bedside table that they are placed on super carefully when she goes to bed and they are on her face as soon as she gets up.

The most important part of the story is that she is not straining to see constantly and doesn't get as physically tired.  She can see, and is finding better success when she is writing and drawing and coloring.  This is keeping her on task longer, is lessening her frustration, and is improving her work.  She is not over tired every single day, and is sleeping more deeply and is waking more refreshed.

Being better refreshed, she is more willing to do physical things.  Which segways nicely to my other new good news.  I bought a tandem kayak for Mother's Day.  My parents are very gracious to watch my kids so I can play on the lake, but this summer, they decided to tour the Northwestern United States and visit family.   Consequently, if I wanted to paddle, I needed to find a family option.  Amelia is a competent paddler.  Charlotte might be.  But Elise is not.  However, I did discover on our family vacation, Spring Break 2016, that Elise very much liked a kayak and was willing to attempt to paddle.  Furthermore, that if she tired, I could manage the whole 13.5 feet of it myself, with no problem.

So, I got one that I could put Elise and Charlotte on and I put Amelia on Ethan's kayak.  It has gone over brilliantly well, and we have gone out several times.  Everyone thinks it is grand fun.  Interestingly, I put it on their older brother, Gabriel's truck.  And as he is in the Army now, seeing his truck in our driveway every day was rough on them.  Now they see it as a kayak transport, and they don't cry when they see it, which was an unexpected bonus.

When Amelia and Charlotte were in VBS, we took out Willow on it.  As a consequence, she now has a real life jacket.

This may not appear to be a huge deal, but when you life stretches out with a daughter that will likely remain at home, that she will be able to participate in an activity that you love, it looks more fun and less wearying.

She also likes to hike.  I mean, she would rather die than walk on a sidewalk or road, but in the woods, she is more than willing to push a little.  Also, very hopeful.  I haven't sorted a way to keep her from getting painfully hot...but I am going to probably look at a camelback and see if hydration will help.

But have I mentioned that I feel like I am getting my hoped for life back??  I am.  I can live without family biking trips if I can find other "family fun options" that don't exclusively consist of movies and restaurants.

Hope is a little word, for a big thing.

Monday, January 16, 2017

Long Time, No See


It has been ludicrously long since I posted.  And I have no real excuse, but I am afraid that if I don't take a broad swipe at the last 6 months, I will give up posting because there has been too much time that was let pass.

The short, please understand excuse, is that I kept hoping that I could share hope and answers, and we still have no answers for Elise's exhaustion and soreness.  The Vitamin D supplement has made a huge impact, but it has not been the silver bullet I was hoping for.

Nor have I gotten much encouragement or direction from our doctors.

In the last 6 months, I have watched several of my friends' kids and family members be excessively tired for less than a month and their doctors ran every test they had available to them, while I had to bully doctors and specialists to run the same ones.  It has been up to me to ask for tests and specialist referrals.  It has been up to me to read medical journals.  I have not come up with any new hypotheses, but I also find myself angry, as it is not my JOB to do so, either.  I mean, other than being an invested mom.

I have not given up, but my panic level is lessened by her physical response to the Vitamin D supplements.  I am low grade seeking, but my anxiety levels had gotten so out of control I was having panic attacks and waking in the night.  And so I had to give it a rest and allow myself to resolve my own issues before I had to seek medical help myself.  Put the oxygen mask on yourself before you put it on your kid and all that.

I feel like there is a huge cavern between typical kids and kids with disabilities in the worry and care that will spring forth when things are not at emergency levels.  Between Elise's general pain, exhaustion, and even her sensory issues I have nothing but proof that this is not in my head.  I have become so angry over this, that I can't even be a good friend at times, because I find myself spitting the same responses that I was given 3 years ago when the exhaustion started.  That's right, that was not a misprint.  THREE YEARS.  I blew off the exhaustion for over a year thinking it was normal teenage growth tiredness.  I started marking and cataloging weirdness for a year and talking to her general practitioner for a year after that before I demanded testing and specialists weighing in.  And here we are with no one worried but me.  Not the best place to be, by the way.

So while I am struggling with medical lack of response path, I do have some incredibly cool stories to tell you.

Without giving you the particulars, as mudslinging will accomplish nothing, we fought to establish a special needs program at the church we were attending back when Elise was moving up to elementary school.  For the first couple years, we tried to fix things to make it easier for Elise, then we decided that we should be advocating for everyone in our situation.  So, in 2011, over the period of a year, we tried.  We wrote up a proposal, we sought resources, we gathered support.  And the church kept putting up roadblocks: liability, man power, and myriad reasonable excuses.  And at the same time, the then current organization for Elise's individual support stagnated. 

We finally concluded that we were unwanted. And even if we "won" and established a program, there would be nothing gained if we were a millstone and not a goal or passion.

We spent the next year, going from church to church, looking for an established program.  Because we were so emotionally battered, we were too exhausted to try again.  We found one that was nice, and we stayed for a while.  Even driving our oldest back to our old church as he had bonds there.  We discovered that the special needs program ended abruptly at middle school at the church we had been attending, and so we again sought a new church home.

We have been attending our current church for several years. And from the first day, they adamantly stated that they wanted us there and that they would find someone for her so she could have a friend meeting her needs and so we could find peace in attending church by ourselves.  I certainly cried over their response to us.  As the years have moved, they have sought to better their program as best as they could. 

Recently we were contacted, by the leadership, along with other parents and therapists and special education teachers.  They shared their goals and asked us what OUR ultimate goals, needs, and desires were.  They are actively planning and seeking to make their program the most supportive they can, for the most needs as they can, and growing it.  They even ultimately want to market their program to the local special needs community and look for new families.

First of all:  I have never had Elise sought after.  If we don't come, we even get called to see if she is okay.  Second:  They have calendar dates for their plan.  Third:  I have never, EVER heard of a church begging for more.

And so, I cannot tell you what a balm that was to my soul.  That my girl was a passion and not just rising to a need...  I am sad to say, that isn't always the norm.  I hope that others with similar needs have not had the path that we have.  But I am here to say that even if you have walked the same path, don't give up looking, because just when you question your plodding, you will round the crest of the hill and have a glimpse of a city of light. 

And it is beautiful.

Tuesday, May 3, 2016

May Day, Mayday, and Such

Things are moving.  Because, that is life and stuff.  We are (hopefully) through "Sick Season".  The very last of it has been vicious.  Like it resulted in making changes in life and plans.

We went on a Disney cruise for Spring Break.  It was kind of because it was our last secure Hoorah, with Gabriel graduating this May.  Perhaps he will be back...perhaps he will be trying out adulthood...who knows?  But it was also because we have limited options with Elise.  With her hurting and being unable to walk much, we either have to use a wheelchair or we have to find vacations that don't count on walking...at all, if possible.  If we use a wheelchair, she doesn't want to get out afterwards...usually at all...which leads to all manner of other things.

The one fun thing that gave a significant amount of hope that came out of the cruise was a tandem kayak rental.  It seems that Elise adores boats.  Of all kinds.  She wants to kayak alone, but is about as safe doing that alone as driving a car.  So, I have been pursuing options.  The fun thing to discover, is that she will happily ride and paddle a tandem.  She only almost beaned me in the head with a paddle a couple of times.  And was actually helpful moving the boat forward.  If she was without a paddle, she whined that she wanted one, but I could manoever us quite well alone.  SO.  It gave me hope that my fun place can actually be enjoyed by her for as long as she ends up being with me.  We can go together.  And she will enjoy it.  PLUS it is cheater exercise.  It actually is, in the meanwhile it is fun...and she sleeps hard after!

Speaking of unexplainable pain: 

We are now seeing a pediatric rheumatologist.  So far, I have been blown off by her and her nurses.  And disrespected by her blood work staff.  We got no real answers from the blood work and the x-rays.  And the only thing it secured us, was a recommendation for Vitamin D (significant deficiency) and an Aleve.  We have an MRI scheduled for this Friday.  I admit, that I am not holding out much hope.  I figure that they will find nothing after a morning of NPO.  NPO is pretty much a recipe for a day of disaster.  NPO is medical shorthand for no food by mouth...for x amount of time.  After which time they will sedate her and she will wake hungry, with a headache, and usually nauseated.  Which is super fun.

I would appreciate prayers for sanity and at least direction, if not answers, from the MRI.

While I am requesting prayers, I am really, really worried about how Elise will handle Gabriel's graduation and going to college.  I am already dreading it for me.  Losing my evening buddy will be hard.  BUT Elise gets weepy and weird just thinking about this.  She is already anticipating and was worried that he had moved out last week when he had only gone on a band competition trip.  He is one of her Most Important People and that transition is going to be huge.

I am currently trying to figure out how to sort meeting her social needs.  She needs friends to hang with.  Like *NEEDS*.  Not just at school.  So if you are a friend, you can expect phone calls this summer.  And we will limp through this whole teenager thing together.  And hopefully if I can iron that out, it will make this fall less hard.

Wednesday, March 2, 2016

Why Should You End The Word: The Historical Picture

I typically post the End the Word Day post on 3/21, as it is National Down Syndrome Day.  Today, I have a bigger post, my brain took off and got grandiose.

Last year, I decided that the heart of the disparaging use of the word "Retarded" was less the word choice.  (You know, find an unoffensive word to call someone...there are many synonyms and all that.)  And I boiled it down to this:

"If you can't use the "R" word, why do you need another word to cut and hurt?  Why do you need to find another disparaging word?  Why can't you walk away?  Why can't you use nice words with your friends?  Why do you need to tear your own worth down because of a silly mistake?

Look for the good.  Understand choices come from others' pasts.  Understand that you are human, and move forward.

If you can't say something nice, DON'T SAY ANYTHING AT ALL."

I believe the most "popular war" was that of World War II.  It was possibly the only war in the history of time that had a clear cut bad guy doing bad things that was clearly defeated.  There are BUCKETS of documentaries on it, movies, and books on it, because of that fact.

The  WWII concentration camps were used to confine "dangerous" political adversaries first.  Hitler was doing it to protect those in power, and the superior groups under the guise of protecting the country from groups who would damage their country.

Then, they decided to weed out the sick to strengthen the general population and keep them "safe".  There were euthanasia plans, panels, and those who carried them out.  Then there were horrific experiments performed on them.

And all of these things were allowed by the rest of the population.  No one said anything.  Because it didn't apply to them. 

It was a slow devaluation of certain lives...that quietly expanded...in both the groups targeted and the violence that was heaped onto the groups in isolation.  The sick became the physically disabled, the mentally disabled, the Romany, the Jews...anyone without voices...anyone without support...even those who would protect and support those that were having these despicable acts done to them.

The most horrifying dart of information that I got as a parent of a child with disabilities was the knowledge that the first group of people to be categorized, tortured, and murdered in the death camps were people with disabilities.  They were first line.  They are the unmourned of World War II.

If the entire population had banded together and said "NO.  No one deserves this." at that first time, at the first wave, I don't think the camps could have gathered the momentum he did.

Now.  I am not conspiracy theorizing here.  I am not saying that we are prepping for the next crazed tyrant.  I am really not.  I am saying that this level of disrespect of others is the beginning of that first wave.

And I ask you to ask yourself, what is that first ripple of that first wave?  Believing yourself to be better than your neighbor.  To scorn your brother.  To believe you must be superior to be valued. 

You are nothing without compassion.  You are nothing without love.  You are nothing without your brother.

End the use of the word "retarded".  End the belief that living life more slowly is bad. End believing that you must be superior from your neighbor to have worth.  Love those that show life is a full spectrum of abilities and histories.  Be the voices for those who have none by LISTENING TO THEM.  Learn the beauties of life that they offer.  Feel the struggles and triumphs that they have experienced.  Learn and grow and love.  You will be the better for it.

And in these political days, I highly suggest that you look for that respect in your next president, as well.

Friday, February 5, 2016

Itty Bitty Living Space

Today I went on a bit of a rant on Facebook.  I'd like the chance to explain myself a little bit.  Give some perspective.

My Facebook post:
"I don't particularly love having to pick up my kid in the handicapped pick up in the back parking lot because it means my kid is not ABLE to sit like yours and wait without being unsafe. But I do know that when I was forced to pick up in the regular carline, I got hands flailed at me, cussed at, and flipped off for taking so long.

Imagine my irritation at getting flipped off, cussed, and flailed at for trying to save you time by picking my kid up in the handicapped area.

DON'T be a TURD. Or I'll take pleasure at gumming up carline.

You'll mess only your own nest."

I get the big arm flail...you know the one...the one that asks WHAT ARE YOU DOING? with exasperation...about once a day in carline.  I get flipped off about once a week.  Today was a first time event this year, where not one, but two cars cut me off and blocked me from going down the other lane to avoid the carline, so I could go around back to get Elise.  I am not sure what they thought they were proving by doing this, especially as the principal goes around back and makes sure you are supposed to be there if there is too much traffic in the back.

Here's the thing.  I don't feel that IT'S MY RIGHT to get special treatment.  I prefer for my child to get help to remain safe and for us to be able to take our time without duress at every transition.  Especially as it is truly her body (and sometimes mind) that requires more time to plan movements as she gets in and out of the car.  But I don't WANT to block everyone else as my life moves in slow motion.  My life always moves in some kind of time subset from everyone else, I am used to it.  I cannot plan what will make a day go sideways, though, and if that happens, it's going to get weird fast. 

As a matter of fact, a friend posted up a comedian talking about his son with autism.  He said something along the lines that he never knew "how to describe taking care of a child with autism....  But during a festival, it all became very clear.  It's like taking care of your very best friend, after they have done waaaay too many shrooms.  While you yourself are on a moderate amount of shrooms."

Now, Elise has not been diagnosed with autism, but she does have a lot of personal similarities.  And I have, on more than one occasion, likened my life to Alice in Wonderland.  Things get keep getting weirder and weirder...and you know it's weird, but everyone that you are dealing with makes YOU feel like you are the weird one in the situation.  You are forced to change yourself and your expectations so many times, that you find yourself just as crazy as everything else appeared to be.  (And, for the record, I also said, all through high school and college that I absolutely thought Lewis Carroll wrote it while high.  You know the drill, right?  He thought he was being suuuper deep, and was smart enough that he managed to tie all the crazy to actual happenstance, political or otherwise, but it was still completely wacked out.  Yuh.  That.  You've all seen that guy once, right??)

EEEEnyways, back to my story, I am truly doing you a favor not to tie you into my brand of crazy.  So if you don't have a child with special needs, you may think that I am getting these absurd special privileges.  But let me explain this to you in a nice, tidy little nutshell. 

You know the scene in Aladdin where he tricks Jafar into wishing to become a genie?  Because Genie explained to him the paradox?  (https://youtu.be/SfTfXLLJlzM)

Well, the allowances may appear to be
"Phenomenal cosmic powers!!!!"

But to us, as special needs parents, it's really just allowance to get tied up into our
"Itty Bitty Living Space", where our child feels and IS safe.
So, do us a favor, and be patient.  Please assume that things are more complicated than they appear on the surface, because they usually are.

Wednesday, December 16, 2015

Open Letter to My Daughter's Support System

Tis the season where you shop for your family and your kids' friends and your kids' teachers....and so on and so forth.

I will, without a doubt, post again about the holidays, but today's shout goes out to the host of people that brings me zipped coats and intelligible words.

I have to buy gifts for the people who I live with.  I have to buy for family members who are hard to buy for.  I have to buy for people who expect presents, but are not happy with anything.  I get to buy for people who are easy, and I get to buy for people who are excited for anything...but those are mixed in with obligation gifts.  And just because someone is easy or hard to buy for, in no way illustrates who I love deeply...

The list of people that I LOVE to buy for is short. 

The list of people that I would LOVE to buy for is ridiculously long.

And every year I am faced with squeezing the budget for that last category. 

But I want to take this moment to say to my daughter's teachers, aides, and therapists:

I wish I could buy each and every one of you a loaded gift card for Target or Staples, a trip to the spa for a massage, luxurious goodies, and a trip to Hawaii.

The work that you put in over YEARS of fighting for the same thing for my kid, is not unnoticed.  That we have been working and crying together for tied shoes and zipped coats and clearly written alphabet and spoken pronouns for 10 years...well, we are sisters and brothers-in-arms.  You know better even than most of my family how HARD it's been crawling up canyon walls to get to heinously behind, wrestling our way up from static and stalled.

You have been the backbone to Elise's scholastic achievement and her social successes.  I don't lay down on the job, but I also know I can't do it alone.  I know some tricks, but you know many more, and are continuously learning for MY KID.  You learn the hard way how 6-50 kids react in stressful situations.  You take even physical abuse protecting my child from herself.  You go home every night, trying to figure out what else MIGHT work for 10 kids...and you make mine feel like she is your most beloved.  You reach out to me when I cry at IEP meetings, crying with me and offering me comfort.

If I sat on Santa's lap right now, I would wish that every single time you opened your desk drawer, you would discover just exactly what you needed.

I will have to content myself with gifts that actually depress me to give you....in desperation that you feel how much I value you.

Because this year for Christmas, you gave me a kid who could talk on the phone with me and make sense, and, despite warning me that she may never be able to zip her own jacket zippers two years ago, she has done so, BY HERSELF this month, for the first time.  I have gotten more weepy about that than my son applying to colleges (shhhh, don't tell him).

Thank you.  You are the very best sort of elves.  You work magic with my girl and you do it with creativity and the most amazing ethic.  And, frankly, you don't get paid nearly enough for all the magic beans you plant in our lives.