Friday, October 14, 2011

SPD ADHD ASD... An Alphabet Soup of Labels.

I always joked but seriously expected Bailey to have Attention Deficit Hyperactivity Disorder {ADHD}. From the time she was in my gut she never stopped moving. In fact, I pretty much got abused from the inside out... seriously. So I figured around Kindergarten she'd be tested and we'd go from there. She has a pretty strong genetic pre-disposition for it.

Well, when I was pregnant with Trevor I finally asked the doctor about it {she had been with Pediatrician #4 for a little while at point- several months.  I was on the verge of losing my mind, seriously. I'm not kidding.

Honestly, for a really long time I just thought I was a weenie and couldn't hack it as a mom. I thought things like, "Why are all of these mom's so composed and calm with their kids? Why can't I be like that? She's just a baby! What's wrong with me?". I mean, I realized that Bailey was hard to handle... even my pregnancy was MISERABLE. For the most part, I just thought I sucked.

Looking back, I'm realizing that it wasn't just me. Over the past year we've been in a whirlwind of evaluations and therapies. I've come out of all of it still feeling like I know very little about the whole process and feeling like I was denied information that I should have been given a whole lot sooner. In fact, Hope Haven flat out misinformed me as to the age that Child Find starts and as a result Bailey missed out on over a year of benefits and therapies that would have been really helpful in preparing her for Kindergarten next year. My Pediatrician {#2,3, & 4} failed to inform me of Early Start. That's another year or two denied her.

Bailey was diagnosed with Sensory Processing Disorder {SPD} at Hope Haven and started receiving Occupational Therapy {OT} there from February to April, until they lost BOTH of their therapists in the same week. They didn't put us on a waiting list, or refer us to another therapist or tell us where we could get therapy in the meantime... nothing. In fact,  I had to continually call them and ask if they'd gotten a new one... and they did eventually "but it would be 2-3 months before she is certified with the insurance companies".  So she has been out of therapy since April.

I usually get annoyed with people who are uninformed and not savvy enough to research and find things out on their own, including my self. This was the case. In the past few months, I have learned WORLDS more than I knew before. Most of the information I have gotten from people at church or friends. I'm so grateful for that information. It's hard to know what questions to ask when you are going through something like this for the first  {and hopefully, only} time. It's hard enough learning and coping with your child not being "normal".

COME ON, we have all known Bailey is not "normal" she's a spunky, funny, caring, WIRED, energetic ball of fire. I love her more than life it's self.

When we started evaluations with Child Find and Duval County, I honestly thought that they would come back and tell me she didn't qualify because she really wasn't severe enough to. NOPE. It was the opposite. I got her IEP {Individual Education Plan} and starting trying to decipher through it with the help of my Gramma, who used to teach ESE and my sister in law Natalie, who has an autistic son and has been through all of this. Turns out, Bailey is really smart {which we already knew} but on top of the SPD she is almost definitely ADHD. Clinically Significant is considered between 56-65 on the Conners Index and other areas of ADHD {inattentive, impulsivity, etc}. Bailey is >90 on ALL of them. YEAH.

Soooo, much worse than we thought. It's somewhat gratifying to my psyche, though, to know that it hasn't just been that I can't hack it all these years. Is that bad, to think that? I guess it doesn't matter, because it's how I feel.

I put her in a VPK program at Lighthouse Learning Center. They have staff that are trained and equipped for special needs kids. They also have much smaller class sizes, which was a MUST. She wouldn't have been able to focus AT ALL in a class of 18 kids. I didn't want her to be labeled the bad misbehaving kid, because she isn't. She's a GREAT kid. She just can't focus.

So anyway, Lighthouse is a Clay County school. So we needed to transfer her IEP from Duval County {we literally live across the county line, BOO}. We had the meeting, my Gramma went with me. We couldn't transfer the IEP because we aren't in Clay County and they send social workers now to verify that kids actually reside with the family member whose address they are using. MEGA BUZZ KILL!

The child psychologist that is staffed at lighthouse and has observed her threw around ASD {Autism Spectrum Disorder}. That's not the first time I've heard those letters.  She and Bailey's teacher {who is pretty much awesome and has the patience of Job} both said they weren't sure if they would evaluate her for it and were literally on the fence. She is missing some of the markers {IE- her social interactions are acceptable with peers,etc and she also makes great eye contact, and doesn't really have a tick} but she does have others, and they just really aren't sure. It could just be the combination of the SPD & ADHD or it could be ASD.

It's been an emotional roller coaster the past couple of weeks. Now, I have to decide whether I'm going to transfer her to the program she would be in Duval County {which is REALLY unimpressive in my experience} and let her get the help she really needs for the next 7 months OR keep her at lighthouse with her friends and teacher which she's grown attached to and hope to HIGH HEAVEN we can find a rental in Clay County in May. I am just not sure which would be best for her at this point. It's heart wrenching.

We have a lot of praying to do. And sleeping. Which I haven't been doing for the last 3 hours. Why?

Callen woke up, fed him, he played in his crib for an hour while I laid in bed wide awake. So I bust out the ole' itouch and check my email and there is a Feingold Newsletter in there. I usually delete these right away so that I don't start feeling guilty for being a slacker... but that post is coming soon.


2 comments:

  1. Oh dear Kylie! You and your family are in my prayers. You have a lot of strength that not many people have. Good luck in the quest with Bailey!

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  2. That's a lot to hack. The world of IEPs is like a whole new culture with new words, abbreviations for all those words and terms, and a whole system and way of doing things. It's good to go to people who are familiar with it to get their input. My two cents is this (for right now): Bailey's "classification" (ADHD, ASD, whatever) is important because it give some sort of direction for treatment. The most important thing, though, is to be specific about her behaviors that keep her from adapting to a typically-functioning environment and to set specific objectives to work on those. Sometimes people get so hung up on the label and forget to really delve in to helping improve the behavior while working side-by-side with the child. When you do, you start to see improvement. You are a great mom, by the way.

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