Wouldn't It Be Nice!

"Wouldn't it be great if, when you got the diagnosis of autism for your child, instead of the neurologist saying: "i regret to inform you...' he/she said instead: 'congratulations! your child has a special genius gene! The challenge and adventure is going to be how we access that genius. But it IS and adventure, and here are all these of adult autists, even severe ones, who have gone on to have careers, love lives, who contribute hugely to society. And we are in lock step, should to shoulder with you on that adventure.' Then they point to a bucket of champagne on ice, open it up, pour out the glasses and say: "Now let's drink to that adventure!"
Imagine that
Let's celebrate autism. Horseboyfest.com. Sunday April 13th, Elgin Tx 78621.
LIVE FREE RIDE FREE"

This is a quote, I'm assuming that the quote is from The Horseboy's father.  Again, I implore you if you haven't seen, "The Horseboy", please watch it.  And if you're in the area of Elgin, TX, take advantage of this.  I really want to take Javy there, one day, so check it out for us.  

But anyway, this statement really hit home, because I believe that it helps illustrate a point that I've been trying to make.  So much time was wasted in the beginning of our adventures, by hurt feelings, denial, pride...  I guess, I could go on and on.  I'm sure if we went through it, then some other parents have, too.  I believe that we got to take the path that we take, and regrets are fruitless, but I'd like for someone to learn from my own.  Do whatever you can to get over the original hump and just move on with it.  Listen to each professional and even if hurts, if its what is best, go with it.  We've been at this for twelve years now.  I, either fall madly in love with the health and education professionals or go psycho on them.  

And its all got to do with approach.  I've got a saying of my own, "You can be right all the time, but if no one will listen to you, what good is it."  I really disliked the doctor who initially referred us over to early intervention. It would've been so nice if she would've approached it in the above manner.  I mean, right off the bat she told me something I didn't like.  Maybe if she would've said something like, "Hey, you're gonna be a great mom and get Javy through these challenges."  But she didn't and it doesn't really give me a right to disrespect her or anybody who doesn't tell me what I don't want to hear.  As the mom, I've got to sift through the information, and say thank you very much for your input and either, take or leave it.  Maybe if I would've been more realistic with what was going on at the time, and been more aggressive with getting Javy the therapies and more medical attention, more could've been done for him.  

I can't have the time back, but I've certainly learned from that mistake and moved on.  

Educated Mama

Ladies and gentlemen, I am emotionally drained this evening.  My day took an unexpected turn when I decided to organize all of Javy's medical and school records.  I think I've mentioned it before that we have an appointment with a new neurologists and that I'm going to thoroughly prepare for it.  I took the big stack of paperwork that dates back to 2002, nothing that is new to me.  I'm sure that I analyzed each and every one of the reports, at least five times, looking up big words that I didn't know, and coming up with my own diagnosis.  As I sifted through the geneticists reports, I pulled out my Merck's Manual of Diagnosis and Therapy (Yes, I have one of these, I found it at the used bookstore.  An educated mama is a dangerous thing).  I turned to the section on  pediatrics and noticed a chart on normal development.   It just flooded over me, all over again, all those lost hopes and dreams of a child who would play soccer and baseball.  And how I would save up for his college and he would go off to college in a junky car that he worked at Sonic to buy.

But that's not the really emotional part.  When I got to his evaluations for his early intervention services after he was nine months, then his assessments for preschool.  I was reminded about how he could still say words and used his walker.  But then I found the worst thing of all.  A note that came from a very dark time in our lives.  The note displayed my immaturity at the time, because I refused to work with this horrible teacher. Instead of fighting for Javy, I just didn't deal with it.  Coincidentally, this was also the year that Javy regressed a whole lot.  Prior to this Javy had the most wonderful teacher and he seemed to do very well.  But hints of his regression were there also, so I can't blame the bad teacher for Javy's regression.  But I guess at the time, I kind of did. I saw this letter and I just started tearing up.  I failed Javy at that time by not dealing with this lady.  That's how I handle a lot of stuff, by ignoring it.  Looking back my ignorance was appalling.  I just wanted Javy to be okay, and I didn't want to listen to anybody who told me differently or that he wouldn't catch up.  I hope that I can help people now with what I've learned.  Even with all the emotional drainage, I did learn something today.  I started seeing all of Javy's reports as a collection of evidence.  Before I had only looked at them individually, but put together, they are a time line of events.  I can see patterns now.

So that's my story.  But I want to add some lessons learned and some information that might be helpful to those who are just starting the process.  If I would have just had some basic facts at the time, maybe I could have done better for Javy.  First of all, when you or anyone first notices that your child may have delays or need special services, there's a process that they will have to go through to get the services that they need.  And if you, as the parent notice the delays you may have to fight to get them the services that they need, but just know that its a federal law.  The state that you live in must abide by it. From 0-2 years old, it's called Early Intervention and its a family centered plan.  Easter Seals does the early intervention for the State of Hawaii.  http://www.easterseals.com/hawaii/our-programs/childrens-services/early-intervention.html

It's been years since we've been through the process in Alabama.  Javy was actually referred over after his 9 month checkup when the doctor noticed delays.  I honest to God, didn't know what was going on.  I was in Lala Land or something.  All I could think was that they were wrong.  But they told me to go to this other doctor at a certain time with Javy and that's what I did.  I showed up with Javy, it was at the Children's Hospital of Alabama and I just couldn't wait for this doctor to prove the other doctor wrong.  But she didn't.  The next thing that happened was a lady from The Alabama Department of Rehabilitation Services came over and looked over our home and asked us lots of questions and played with Javy.  I didn't really know what to say, I read in one of the reports that I said that I didn't work with him enough and maybe that was why he was delayed.  I read in another report that I felt like I spoiled him and he wasn't able to do things independently.  Yikes!  After that nice lady came to talk to us, therapists-physical and occupational, started showing up at the house at predetermined times and teaching us things.  Honestly, I didn't know what a physical therapist or occupational therapist was.  I was confused by the term occupational because Javy didn't have a job.  That's how hazy things were to me at the time.  I didn't think it mattered because Javy was going to catch up and we wouldn't need all of this special attention. So my advice to new parents is ask questions, lots of them.  And if its possible, accept with open arms whatever help you can get.  Our children are beautiful and precious, and we are their protectors.

I'm tired and I think I tackle the school aged saga in another blog.


By the way, each state can choose how they render the services and that's where it's going to get tricky.  I only know about Alabama and Hawaii.  I need everyone's help otherwise, so if you'd like to share your own personal stories from the state that you live in, please feel free to e-mail me: javysmama@me.com or message me on Facebook.  Our Facebook page is now Super Parents of Super Kids.