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.

WE HAVE ANSWERS

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.

Long Time, No See

Hi. 

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.