that’s not confrontational

you know what? the world stinks if you are considered disabled.

it gets a little bit stinkier if you are non-verbal and therefore considered voiceless.

and it gets the stinkiest when people insist you are more disabled than you are therefore holding you back from your full potential.

i was told using ‘you’ in a sentence was confrontational when describing the situation.

that’s not confrontational, what’s confrontational is the whole time i was talking to you, i was thinking you looked like gary shandling with a tan.

gary

“she will be a child her whole life.” i was told about emma and why she cannot decide whether or not she wants to go somewhere.

“even children get a choice to say no.” i countered.

“no they don’t.” i was told.

“i don’t know about you, but i do give my children quite a few choices.” i replied.

those of you who have been reading this blog for the long haul know there have been ups and downs with emma. know there have been grieving processes and celebratory jumps. yesterday i found myself grieving a little more.

when emma turned 18, i genuinely, truly, sincerely, thought she would have a little more voice. a little more freedom, and little more rights.

guess what?

she doesn’t.

it does not matter if she does not want to go. it does not matter if we have to force her out of the car. she should have a choice not to go. one choice in the mid-week visit is all that was requested.

being non-verbal does not make you silent, and that is the biggest travesty of all.

it does not matter. her voice does not matter.

and that, gentle readers, makes me confrontational.

angry-eyes

luckily i packed my angry eyes.

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why is it hard to admit it is hard?

some days, well, quite simply, it is hard.

not hard like when the queen and bear where small, or when bear was struggling with violence.

hard in that my 15 and 16-year-old still require a lot of time.

hard in that they are not your typical teens.

hard in that some days i am tired of poop.

so, why do i feel like i am failing in some way by admitting that it is a challenge some days?

to admit that i am tired.

to admit that i would love to be able to just sit and read or watch tv without thinking that i have to plan an activity for bear and queen, to wonder if i am doing enough, to think of bath times, dinner, exercise, interactions.

admit that maybe my normal is sometimes abnormal enough that i wish for a day of normal just to see what it would be like.

then i think of these things:

bear kissing pointing his fingers into a gun, kissing the tips, then shooting.

that queen likes to take a bath with this:

that she hates dogs and cats but checks books out at the library all the time about them.

that bear truly misses me when he is at school and is so happy every.single.day to see me when i get him.

i have to let myself admit that it is ok to say it is hard.

it is ok to tell people that yes, yes, i am tired.

it is challenging.

to admit that there are chinks in the armor i try very hard to keep up all the time and the past two days have made those chinks pretty large.

on a different note, i was able to get a pic with both queen and bear in the same frame, which is as elusive as nessie.

008

a queen climbs into my bed…….

last night, as i went to tuck queen into bed and say goodnight, she patted the bed and said “now here you go.”

as you all know, queen hardly ever says anything and when she does,

we do it.

immediately.

not only was i shocked that she had invited me to lay next to her and visit WITH WORDS, she actually wanted someone that close to her!

i can only suspect that she was feeling bad for vomiting in my bed earlier that day.

remorse is a powerful thing.

i will tell you this right now, that girl can vomit all she wants in my bed if it means she will talk to me AND let me lay next to her.

 

i am a visual lass

when the big 3 were first diagnosed, especially keats and queen, almost 11 years ago with autism, things were just starting to get some steam as to what to do.

early intervention was just beginning to be realized as an important step.

and although there were some,

there were not near the choice of schools and programs that there are today.

i felt like a steam train pushing through mounds of snow drifts on the track trying to find programs and schools that fit the needs of the kids.

well, almost 11 years later i feel the steam building once again.

keats and bear are easy, and easy is a relative term based on everyone’s situation.

in placing them, they are still academic based in schooling.

sure, bear likes to add a curriculum of hand-to-hand combat in his educational journey,

that is until he met his hand-to-hand match in ms. joeden parker, now he just tries to blow the competition away……

literally.

we need to find a secondary school for the queen.

queen is not academic based.

queen is how-do-i-get-my-peasants-to-do-my-bidding based.

we need to teach queen the you-are-now-going-to-do-the-work-yourself-this-is-our-emancipation-day based school.

in short,

life skills.

queen needs to be around kids her own age.

she is most definitely a teen-ager and in a lot of ways still an elementary student.

who do we find a school to accommodate both?

she needs to be in a setting that is still somewhat floortime based,

she needs a setting where she can learn life skills such as simple cooking, road signs, shopping, and cleaning.

sure, we can teach her all this here, but she needs the social part of school

queen is so social.

we are not asking for much are we?

if there is such an epidemic of autism why are there not more programs out there for secondary education of non-verbal autistic children and not just early intervention?

is this too much to ask?

it seems, once again, that queen is in the group that is the front steam engine moving the snow out-of-the-way so the rest of the train will be able to zoom along smoothly.

maybe in 11 more years there will be the same amount of secondary education programs as there are early intervention programs and elementary programs.

until then,

we will steam ahead and start looking for the perfect little kingdom for the queen to rule next school year.

any suggestions?

i don’t think my ‘shine-free’ facial wash is working

i don’t know about you,

but i feel like a lucky penny with this hair color.

i wonder if i will land heads up today.

in honor of emma…….one day late.

As yesterday was the queen’s birthday, i wanted to make the ode to The Queen post for her.

We did the normal thing that most parents do after a diagnosis; we looked for the tangibles, the things we could do to make her better.

We started with her hearing.

I took her to an audiologist to get her hearing checked.  HA HA HA HA HA HA HA!  I don’t know who thought I could put Emma in a sound proof room with head phones on while she waits for noise to come out of them but they wanted me to.  When testing her hearing we found that her right ear had a flat bell shape.  A normal ear makes a bell shape when the sound initiated is heard correctly.  The doctor sent me home with some drops, thinking that it just may be some fluid build up and to come back in a week.  I made the appointment for the following week and left.

When I returned, it was a 45 minute drive from my home to the office. I checked in and I waited for my turn in the waiting room.  It was a very large area in that it served many doctor’s offices. Lots of tables with magazines waiting to be knocked off, plenty of old people to watch me and tsk-tsk, and very few toys.  I had my three little ones 8 months, 22 months and 3 years old.

Keaton became obsessed with the elevators and pushing the buttons.  I was carrying Ben, trying to chase down Emma and keep Keaton away from the elevators because the he would make the doors open and close constantly.  The time kept ticking on.  While I was chasing Emma, Keaton finally got the elevator door open without me close by and decided to go into the elevator.  I turned just as the doors were closing making eye contact with a very panic stricken boy.

I grabbed Emma and put her on my other hip, as Ben already had occupancy on one, and began running down two flights of stairs.  Keaton’s screams could be heard all through the medical building coming from inside the elevator.  I had to beat the elevator down and be there when the doors opened.

I did.

I pushed the button to take us all up, marched right up to the receptionist with a child on each hip and Keaton following me still crying asking her calmly what room the doctor was in.  She pointed and said he would be right with me.  I did not care about the “he will be right with me.” I had been waiting almost an hour for him to be right with me!!

I continued my Genghis Khan March to the marked door and kicked it in as my hands were full at the time.  Not only was the doctor surprised, imagine his patient that saw a very flushed, angry young mother with three little children demanding to be seen NOW!  I told him that if he is going to make an appointment he should really keep that appointment.

He checked Emma’s ear, something that took less than a minute and found her hearing to be perfect.  He is the first and only doctor I have ever done that to. Every one has their breaking point.  As I walked out the door and down the hall to the waiting room the nurse, doctor and receptionist just stood there staring.  Let them stare!!  I was leaving and never have been back since.

Next I had read that food allergies can cause what seem like symptoms of autism so off the epidemiologist we went to have Emma tested for food allergies.

I did not know that testing for allergies meant making scratch marks on her back to they could add concentrated amounts of different allergens to see which one reacts.  What I a barbaric way to do things.  I was horrified.  We found out that Emma was indeed allergic……to carrots. Carrots?! Shoot, I don’t even eat vegetables. Carrots were the least of our concerns.

The doctor had us come into her office to discuss the results and felt it was her duty to tell us not to get our hopes up with Emma.  She proceeded to tell us that he nephew has autism and they had done everything for him and nothing can be done.  She continued her little speech stating that she came from a very intelligent family that has lots of access to medical studies and research and to just believe her.

She gave us this speech all the while leaning on her desk with her head resting in one hand.  She came across very arrogant. If there is one thing I can’t stand it is arrogance. Arrogance just because they feel they are more intelligent somehow.  It makes me want to prove them wrong that much more.

My experience with doctors was not going very well up to this point.  I became acutely aware that they had no more of a clue than I did about what avenue to take to help Emma along.  I also became aware that this was not going to be an easy fix.

My dad said that he had always heard the term “blank stare” but had never really thought it existed until he would watch Emma.

Her eyes showed no emotion.  She truly was blank.

This chapter on Emma has been so hard for me to write.  I have thought so much on how to explain what we have done, steps on getting her from point A to point B.  We have been working with Emma for 11 years now. Her progress has been so indiscernible at the time but has culminated into a beautiful, full of life, giggles, laughter and social interactions that are our Queen.

She is now termed a social butterfly by those who know her.  She does this without uttering a word. Her eyes say it all. She is no longer a blank stare. There is no one moment where I can pinpoint and say this is where the change began, that this is where we turned the corner.  If I were to try to pinpoint anything that helped Emma the most I would say it was play.

We played with her.  She was not “in her own world” she simply did not know what to do to come into ours. Her brain was not telling her to play, interact, imagine.  Things that we just assume come naturally to everyone.  She needed to be taught to play.

Of course I have been discouraged and disheartened.  She has kept us guessing from day one of her diagnosis and I don’t think she is done by a long shot.  If I were to predict life for Emma eleven years from now, I would say that yes, she will still be living with us, but I also feel very strongly that Emma will be communicating with us.

emma 001Why do I feel this way? Not for any concrete reason I can give you.  Just by watching her and above all, as I keep bringing up, because I hope that she will be. I hope that she will be happy. I hope that she will be able to care for herself.  I hope that she will always reign as the Queen that she is.