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Wednesday, March 6, 2013

Fighting For Your Child with Special Needs



Yet another step today in the continuing saga of getting a "diagnosis" for my child.  Yes she is legally blind.  And yes she is "on the autism spectrum".  Yep.  It's ice cream.  But what flavor?  Who knows. :(  And Heaven forbid they just test the child or send them to a doctor who specializes in that.  Nope.  You have to play their game.  Can I even remotely say how much their stupid game just STINKS? 

I heard from the Center today for folks with autism and related disorders.. they want me to contact every single solitary doctor/therapist/service provider she has EVER seen and get a copy of any and all records they have... and then give a copy of those to the Center before they can recommend a blessed thing.  Way to jump through some hoops! Bureaucracy at its finest.

Since one of the things required (they have insisted on) is any and all "IEPs"  from each year in public school. For anyone unfamiliar with what an IEP is, allow me to explain.  An IEP is an Individualized Education Program which is from the persons with disabilities act, and each special needs child gets one.  They update them each year, (or more often if needed), and set new goals for the semester/year. The idea behind the IEP is to tailor-meet the child's specific needs, and to help out the teachers and service providers.  Sounds good, right?  It probably would, if they did it right.  Instead it's more like cows getting graded at the fair.  Except I think the cows get more attention and looked at better. :(  And then when the schools lose funding, and classes/services are taken... the kids suffer.

Okay. (back to where I was) I called the last public school she attended four years ago, and after talking to the nice lady in Guidance, (and I think I should get points because I managed to not cry on the phone), they have all her IEP stuff and have it sitting up front for me to pick up!  Yay, that was easy!  Though, I maintain that she has not had an IEP since she was in public school and I took her out 4 and a half years ago so she has not had an IEP in all this time.   

Why they need these old things (the IEP) is beyond me.  She is not the same child she was then.  Not to mention that the folks "in the system" are not exactly the finest in their field, (shall we say?).   Some of them don't know their elbow from their backside, and I was not confident in them then, and I am not more confident in them now.  If they were that great, why don't they have their own practice set up somewhere?  I am thinking these are the ones that barely scraped through.  

I also called and got emailed to me the release forms from the Children's Hospital here.  So I am on track.  I think.  I just hope that this gets us a little closer to getting a good diagnosis, and go from there.  One more stepping stone in this journey.  My hubby pointed out to me today that I asked for this journey.  Yes.  I did.  I could have left well enough alone.   Let my daughter continue to live and grow and play and learn as she is now.  But she is getting older, and God only knows what the future will hold, or how she will be.  I am not risking my baby.  I need to know that what we are doing now will help lay the groundwork for services for her if and when she needs them.  Because without a "real" diagnosis, there's nothing.  Being complacent... there's just no room for that right now.   This is not about me.  I need to do what's right for her.  If a mom does not stand up for her child, then who will?

I will say this.  If any mom out there has a question or concern in her heart about her child... even if it's a concern you've never even voiced out loud.  Follow your gut.  Don't wait, and then later regret it. 
 Your baby is worth it all.  We have to be strong and be a voice for our children.  Don't sit on your hands, and don't let anyone tell you that you're over reacting or that your "just being a mom" or any such foolishness.  You know your child better than anyone else.  Stand up.  Demand to be heard.  Fight for your child.  You won't regret it.

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