Red Flags

From we time we brought Amanda home from the hospital, things were different.  I couldn't quite put my finger on it, but she was different.  I know they say (who the heck is "they") not to compare your children, but I think everyone does.  Jake was always such a happy baby.  He only cried when he was hungry or his diaper needed changed, and he slept through the night at two weeks!  Needless to say, Amanda did not, but most babies don't, but I didn't know that.  I started to noticed red flags.

She couldn't keep much formula down.  I mean every time I fed this baby, she would pull an exorcist routine on me and projectile vomit like nothing I've ever seen.  She cried, A LOT!  Not just your newborn cry, but a high pitched squealing scream type cry.  I figured she had colic.  I bought the baby simethicone drops, and that helped with the vomiting, but my God, that crying!

I noticed when she was a couple months old that she wasn't holding her head as well as she should be.  When we would sit her up, her head kinda drooped forward, titling to the right.  When I would go to her left side, she didn't follow me with her head.  Her eyes would try to trail me, but her head did not.  I physically took her head and turned it to the left. Then she could do it!  I didn't think much about it, but this would be the first of many physical traits that would not come naturally to her, and that she had to be taught.

She loved her swing!  The soothing, rocking sensation that it gave to her.  It was the only way she wouldn't cry, was in that swing.  I would learn later the significance of "stemming", and essentially, that is what the swing was doing for her.  But what baby doesn't like their swing?  At least that's what I thought.

I would bring these concerns up to her pediatrician, and we would set some short-term goals for her, and she always reached them, so I just figured this was Amanda.  The thought that something much much worse was going on didn't really cross my mind.  For example, at six months, she wasn't sitting up, so when the doc said give her till nine months and we'll see, by nine months she was sitting up.  Not well, but sitting up.  Little things, like her not holding her own bottle.  I just thought that wasn't her thing, and she was lazy.  I thought the army crawl instead of the normal hands and knees crawl was cute.  If she wanted to go long distances, and the army crawl was too much, she'd just roll there, and I would laugh, because wasn't that neat?  Jake didn't do that.

By the time she was a year old, I started to get pretty concerned.  She just wasn't learning.  She was not doing the things that most one year olds were doing.  She wouldn't look at me when I talked to her.  Was she deaf?  No, she wasn't deaf, because loud noises would set off a screaming fit.  They scared her to death.  So did any sudden movement.  You know how you'll hold a child up high, and act like you're going to drop them to give them a roller coaster feeling?  She HATED that!  So her pediatrician recommended a physical and occupational evaluation.  It was decided that she needed these services, extensively.  At this point, she was diagnosed with Developmental Delay.

Therapy was so hard for her. She screamed and cried the whole time!  The therapists said that is was like working out.  Using muscles you never knew you had, and it was uncomfortable and she was sore.  Little did I know, I was learning about sensory issues. I worked at Lorain National Bank, and had to go part time.  My boss at the time was great, and very understanding.  Amanda's therapy sessions were Monday, Wednesday, and Friday, an hour each day.  I had a set schedule for Tuesday, Wednesday, and Friday at work.  On Wednesdays, I took Amanda to therapy on my lunch break, and was given the extra half hour for it.  She made slow strides, but we learned that she could learn how to do these things.  They just didn't come naturally, she had to be taught each individual movement, but she COULD be taught.  They started saying things like Cerebral Palsy.  This scared me so much.  I work with a gal who had a son with CP, and she was so supportive and informative.  I couldn't get out of my mind that she could have such a debilitating condition.  My poor, baby girl!  But she was learning most things pretty quickly.  After a couple months, CP was ruled out, thank God, and the therapy sessions was decreased to twice a week, Monday and Friday.   Not that the therapists and doctors wanted them decreased, but the insurance said that's all she needed.  This would teach me that insurance companies are not on that patient's side.  Their main objective is not the patient, but the almighty dollar.  Don't get me wrong, just because she was not in therapy the other five days a week.  Every night, for one hour, we did our home exercises.  Amanda and I would get in the middle of the floor, and we would go to work.  She hated it, and so did I.  but you do what you have to do.

At banks, Branch Managers change branches or get promoted, and every once in a while, you get a new one.  Well that happened to me.  And this guy was a JERK!  He changed my schedule, and didn't care about the therapies.  I was to have them accommodate my new work schedule.  It took a lot of shuffling on their part because it's hard to get the pediatric PT and OT together with their hectic schedules, and at times, her therapy was scheduled on a day that I had to work.  Because I didn't know my schedule from week to week at work, and I scheduled therapies in advance, it was a constant struggle with my new "boss".  I use that term loosely because if you're in a management position, you are supposed to have people skills.  This "man", again, a term I use loosely, would not do that for me.  He told me I had to get my priorities straight.  I told him to stick it up his ass.  (Sorry, but at times, I'm going to be very candid on here, and shoot right from the hip).  I quit.  Didn't even work out a two week's notice.  After almost five years, and everyone I worked with being understanding to my situation with Amanda, I walked out.  I had a disabled daughter, and SHE was my priority!  I was lucky enough to find office work with a home health care agency very quickly.  I was very up front with Amanda's situation, and the woman who hired me was fantastic!  It was a full time job, 9-5 Monday through Friday, but I was given a two hour lunch on Mondays and Fridays for therapy. She was wonderful!

Therapy continued for Amanda for about a year and a half.  That is what we concentrated on for those 18 months.  She met her goals, and the insurance decided her therapy was done.  I hate insurance companies.  To this day, I am now a medical biller, and I hate insurance companies.  I learned how to fight with them, and at least that helped me with my career now.  To this day, I fight with insurance.  Did you know that it is not medically necessary to speak?  Yep.  That's what Medical Mutual told us when Amanda's speech evaluation came back that she needed speech therapy.  She was too young, and speech was not necessary at this time.  Damn them!  I know now how crucial early intervention is with speech.  I didn't know it then, but I know now.  There's so much that I know now........

Amanda started walking at almost two!  She was 22 months to be exact, and we were at Aunt Jean's and Uncle George's house, and she decided that day would be the day she would walk independently.  Once she got the hang of it, she took off around that house.  In Aunt Jean's house, you can walk a big circles around the living room, dining room, and kitchen.  Amanda did....over and over and over and over again.  It was like a light switch turned on, and she was like "OH!  That's what this is about!"  How I still hope for that light switch..

Ok, so up to this point, we've had a few diagnoses.  Developmental Delay, Cerebral Palsy (ruled out), and Speech Delay.  Put them together, and we've got PDD/NOS, or Pervasive Developmental Disorder, Not Otherwise Specified.  I start my research.  Since the insurance companies weren't going to help me get the help she needed, there had to be programs out there, right?  The Internet was pretty new to me at that point, but I quickly fell in love with it, and spent MANY hours researching and learning.  The one thing that I learned changed my life forever.  PDD/NOS....that was on the Autism Spectrum.  WHAT?  Autism??  Amanda wasn't Rain Man.  After all, that's what Autism was, right?  "Gotta get to K-Mart.  Wapner is definitely on at 4, Of course, I'm not wearing my underwear..."  Isn't that Autism?  That's not Amanda!  And what's this spectrum?