Wednesday, May 30, 2018

Putting Out Fires

For almost all of Elise's life, we have been functioning as wildfire fighters.  We were actively battling a blaze that could do serious damage, or we were looking forward, trying to cut off one early before it did damage.  Both medical and developmental.

It is exhausting and rather puts blinders on you so you miss other situations in life, simply because they aren't at emergency levels.  Sometimes it is stupid things, and you realize that younger siblings don't know how to ride bikes or swim real strokes.  Sometimes it is bigger, but you don't realize until you hit code red for someone else. 

I don't want it to be like that.  I read a book as a middle schooler that made me worry about situations like that, but as always, just because you are aware in theory, doesn't mean you will be able to stop it.  I try to stop, even in crises, to have deliberate moments with each of my kids, but stuff still slid by.

I am happy to report that we have had several fires to put out for my others lately, and Elise has had a few things forced to slide.  I know that sounds funny, especially after what I just wrote, but do you understand what that means??  SHE WASN'T AT EMERGENCY LEVELS!!!  Like it was so nice and boring that I missed her growing FOUR INCHES!!  FOUR.  I just cannot even wrap my head around that.  This also means that her health is stable enough to grow.  Unlike when she was a baby and she couldn't grow because her body was too busy keeping her alive.  Or when she was a toddler and it was trying to fight cancer.  Or when she was a little girl and it was trying to tell us her thyroid was broken.  OR when she was having such a bad time with puberty that she missed well over half of her school year.  Or when her Vitamin D levels were so low she couldn't stay awake. 

I am excited over the height, but I am most excited about what that actually means.

I am excited that she can get in on THE REASONS I HATE MY MOTHER COMPILED FOR MY THERAPIST list that every child gets to make....and that they whip out when they are raising their own kids...as their kids compile their own list.

Living life without panic is a good place to be.  I look forward to more.

Tuesday, March 6, 2018

Talking Amongst Ourselves

Elise's biggest struggle is speech.  It has always lagged behind.  I think she is "officially" at a 3-4 year old's level.  Receptive is a little higher than expressive, but as she is fifteen, it's not like dickering over a year is going to change the situation much.  She is not even close to where she should be...and if you've ever chatted with a 4 year old, you know how much gets lost in translation.

I know that I regularly cheer over how she is playing, but the most recent play of choice is Littlest Pet Shop toys, and, thanks to YouTube, she has started casting her LPS critters in movies, which she then has them act out.  Very recently, she has started breaking away from the scripts.  They have been having conversations and even songs that do not belong in that particular movie.  I know that does not sound like a big deal.  But when her favorite drug to deal with stress is to loop 45 seconds of a movie, any kind of extrapolation is kind of a big deal. 

There have been many things that we have not arrived at on time.  Like, some milestones are literally 10 years behind at this point, and not looking like they are coming anytime soon.  There are, however, things that are right on time, that I would have loved to be delayed until we had the emotional wherewithall to deal with.  Like crushes on boys, and planning her future, and well, that list is way too long, too.  It feels like there are just innumerable things that just cannot sync up...and are exhausting on their own.  Not that they are a barrel of awesome when they come when they should, but without the emotional maturity, they are brutal to deal with,

But, honestly, that she is play acting her dreams with tiny plastic puppies is pretty precious to me.  She recently expanded her play to include furniture.  (I know, that I notice this is weird to me, too.)  The lining up and sorting into "families" is just as comforting to me, as to her, because it is the one thing I can count on.  That, and the incredible mess she will make as she sorts all her hoard of creatures.

She has fallen in love with Hulk lately.  They are getting married.  She is having a wedding cake and a wedding dress and it will be on a cruise or a beach.  I am not sure why she loves him so much.  I don't know if they speak the same language, have the same unbridled emotions, or what, but this crush fascinates me.  I will probably get her a Hulk doll, to see if she will play Barbies with him, like she did with her Ironman doll.  See if I get any clarity.

I shall keep you posted, of course. 


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

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.


Monday, January 16, 2017

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.

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.