Monday, April 23, 2012

A Day in the Life........... 2012

I write one of these every year, and this year, I have to say, is the most promising. 

Jadyne will be nine years old in a couple months.  Hard to believe now.

Let’s take a journey briefly to appreciate the moment. ( or this....... or skip past the preview to the now.  Whatever you like :)

I had a baby that seemed so much like any other.  She latched on right away; she looked just like my baby pictures.  

At 8 wks old she wasn’t tracking objects yet.  She could follow my voice around the room, but not actually me.  Seeing as I have very obvious black hair and every other baby found this stunningly fascinating, I found this to be a problem…..

Her doctor said “She’s ok.  She can actually see, as her eyes move together.  We’ll see you in a few months and talk again.”

But the next time we met she wasn’t sitting up yet.  She’d also been put on a special formula called Nutramigen.  See my once happy (but not tracking objects yet) baby suddenly turned into a crying all the time monster overnight and we were told in our “interim” visit that she was “colicky”.

Let’s skip past the next nightmare year with that pediatrician.  She had had her first seizure (diagnosed at the Emergency Room as a “night terror” because yes, 7 mo old babies have SO much to be terrified of???) and move along to pediatrician number two  that at least TRIED…

The next doctor was a kind older gentleman.  He was nearing retirement, and he made us aware.   He had noticed right away there was indeed something wrong, but he wasn’t sure what.  So he had sent us 250mi away to specialists for an audiology (which came back perfectly normal) and a pathology (which showed a SEVERE disorder in both expressive and receptive language) …..

And his answer was “I’ve seen a lot of disorders in my time.  Trust me…..don’t worry about a diagnosis.  99% of the time there isn’t one.  Just worry about treatment.  I’ve told the nurses to schedule you an appointment with early intervention.  Just worry about treatment….not a diagnosis.”

Indeed, they did help…..tremendously.  In fact, it was early intervention that first even said the words “autism” or “sensory integration disorder”.  In fact, these very frustrated, VERY underpaid women with their beaten up cars that they used for transportation to all their underpaid appointments even snuck in extra time, as my daughter was only one of two back then they even suspected of that horrific word…….”autism”.    They snuck us sensory toys to keep from the “lending” library like threading beads and Snoezelen tunnels.  These women were not therapists.  They were angels. 

…..but they were angels limited by age.  Early intervention is “birth to three”.  Eventually my daughter did turn four.  Now what?

From the time we took her to the pediatrician that at least ordered assessments and the time early intervention was ending, she had already been hospitalized.   During hospitalization, the doctors determined she had epilepsy, a generalized seizure disorder, and there was some underlying cause of developmental delays.  Despite the doctors best efforts (6ccs of blood every 4-6hrs, every test known to GOD himself) they couldn’t give a definitive “this is it” answer, yet they believe there was ONE underlying condition causing both her epilepsy and “delays”.
We still didn’t have a diagnosis.  So I took her to a psychiatric center and finally they gave her the diagnosis of Pervasive Developmental Disorder “Not Otherwise Specified”-- PDD-NOS.  Mind you, the time I took her for this particular evaluation she was probably at her worst ever behaviorally, yet this evaluation because she was only four, in a year where autism wasn’t even considered until at least five, she was given PDD-NOS because that was considered “mild” autism.  (Two months later, the announcement came over the news that pediatricians would now screen all babies for autism as early as one year of age.)

...Later she'd be diagnosed with autism, severe autism, with a prognosis of "poor".

The next couple years, (I so lovingly refer to as the “hell years”) involved several hospitalizations (a few of which I worried of being arrested for my uh passion ? in the ER) would involve me leaving my soaring career, devoting my entire life to understanding this disorder and to suddenly becoming a totally unpaid full-time doctor, nurse, nurse’s aide, dietician (we tried the ever so crazy expensive GFCF diet--with great success but not enough money to sustain it) and attorney.

Why attorney?  Oh, she had reached school age by this time, and there just so happen to be a particular school district that decided that my child shouldn’t be afforded the right to ride a school bus like her non-disabled peers simply because she had autism.  (It cost them $50k for their dismissal of “Least Restrictive Environment” which may seem like much, but believe me, nothing compared to my stress and effort in getting her the simple gleeful squeal of “Bus! Bus!” she has each morning.) 

Over the years, I’ve learned my way around a research lab.  I’ve gained some friends in a few “offices”.  I’ve isolated myself to those that just “get it” without having to explain WHY I “can’t go out for a bagel”. 

So to today………

Jadyne is doing FABULOUS now.  She’s learned to identify her name from others.  She can navigate herself around the computer and ZAC Browser.  She isn't the least bit agressive, but instead described as a "baby doll", and everyone wants to "take her home".  She most certainly can say more than the 10 words, which was once the most a doctor told me she’d ever say.  She can now identify the majority of the alphabet.  She’s doing great in self-care, brushing her own hair, showering herself.  She does feel pain more like normal, and her self-stimulatory behaviors have decreased.  While her hand flapping has increased, the harmful head-banging and pulling hair have vanished.  I can take her to Wal-Mart and Giant Eagle without meltdowns now.  (We do still have issues in longer-stay areas like restaurants.)   She actually made FRIENDS this year (and yes, mom cried).  She makes eye contact better, and her speech is coming along.  She can say many one syllable words now, as well as a few multi-syllable sentences even.  We’re continuing our attempts at achieving an AAC device to improve her ability of communication.

The point is FINALLY I can see some real progress.  All along the way, people (friends, therapists, family) have been trying to reassure me by saying “I can see she’s doing a TON better than before!” but I as her mother, the one that sees her every day just didn’t feel it.  This past year though, her progress was so great, so amazing, that it even surpassed my vision.  THIS year……..I indeed saw the progress.

There were days I really didn’t think I’d make it.  There were days I’d shamefully admit only to my very closest friends that I was considering just giving her up, that maybe someone ELSE could help her.  Of course, those amazing supportive friends of mine would remind me of some recent miracle breakthrough of my daughter’s and snap me into perspective that even if she wasn’t making the progress that I thought she should make she was making more progress than any “professional” ever said she would. They'd remind me that my daughter needed ME, that there was a reason I was chosen for this very special child.  Thank you to them.

Those moments have been my most shameful.  I can admit them now, now that I’m on the other side of hope.  I want other parents to read this, understand, it’s totally NORMAL to not feel like this is normal.  It isn’t!!!!  When you are feeling your baby kick your belly, dreaming of her soccer games and weddings, no, you are NOT signing up for cleaning poo out of her hair, ears, and off her wall.  You’re not signing up for learning a new language of ASL and AAC devices and giving up your career and learning to be a disability education advocate.  Oh……….. but maybe, just maybe you are…..

Maybe YOU are/were 1 in 88.

The final report, as every year prior………this kid is amazing.  She fights day in and day out to break out of the impossible shell she was dealt….and she does!!!  Whether you’re a mom that just is now feeling something is “off”, or have already been told you’re just “being overprotective”, or have received a recent diagnosis, or aren’t getting the results from therapy you’d hoped…………..

KEEP TRYING!!!  I totally totally promise you, yes, it’s worth it.  Yes, it does get better.  Yes, it does get easier.  Yes, YOU can do this.  I’m no super star.  I’m just some mom that got dealt the card of a disabled child, and I, like you, figured my way through.  You will too.  

What's to come?  I'm currently attempting an anti-inflammatory diet with Jadyne.  It's working thus far.  I haven't informed her teacher yet that she's on it, but I've "coincidentally" been getting reports home daily of how Jadyne just suddenly seems to "be retaining more".  

There's an answer to this disorder.  I just know it.  We'll find it eventually.  Until then....keep on trying.  Some things will work.  Some won't, but as long as you TRY, you're doing your job as a parent and that makes these kids and you just absolutely blessed to have each other.  I DOES get better.


Dawn @ Sugar Free Candyland said...

Great post Jax! It's very important for other parents raising a child with ANY disability, to know they are not alone in their battles. For the first year after Little Man's diabetes diagnosis, we felt so alone, knowing only a handful of adults with the disease, but no children with it, or parents raising kids with it. Once we found others going through the same struggles, it helped both us as parents, and Little Man cope a lot better! Now, I'm on a mission to find other parents who also have children with APD, this time, more for my sanity and to ask questions of other parents, than for Princess, who is still too young to even realize something isn't quite right with her. One battle down, seemingly tons to go... but, you know me, perserverence is something I've learned to become good at LOL!

Tim Lomas said...

So good to read of the progress Jadyne has made in the last year. Very well written... best wishes to you and Jadyne.

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