Parent Advocate/Army Wife

Abigayle - posted on 09/20/2010 ( 1 mom has responded )

I have four kids of my own and my first husband and I had our second child, Andrew, in 2002 who was diagnosed with Autism and Sensory Integration disorder. There was not much even five or six years ago as there is now...there wasn't as much hope and ABA was putting people in the poorhouse. We were just discharged from the Marines and it was ruining an already fragile marriage. I was the only one in his huge hispanic family to truly believe and truly want to fight for his Autism.

I was a bad mother or I spoiled him. Since they felt this way my spouse also didn't accept that he wasn't normal. This is right after he went from jabbering away to not talking at all after his 18 month vaccines. After his two year ones he started getting violent. Self inflicted. Jumping off de-humidifiers head first into the floor, banging his head into the wall, running and screaming and nothing we did could we get him back to the way he was. I think I heard every reason under the sun in California; why he wasn't talking. When he turned three I went into the Northern California clinic we were near by that time and sat in the doctors office hysterical and begging her to listen to me; my son was Autistic. I had a nephew already diagnosed who was like that from birth. I was a psychology major so I at least knew and were aware of the signs and the red flags. That was the first time anyone listened to me but the only doctor who believed me for another three years.

We joined the Army and moved to Texas; we needed the medical insurance and the income and we really were making a last ditch effort to save our marriage. We had a daughter in 2004 that our son Andrew tried to kill by tipping the bassinet over, by laying on top of, by trapping under blankets or under laundry baskets. At 18 months he wanted formula again and even though at three he was on table food it was mcdonalds chicken nuggets, french fries and macoroni and cheese.

I was the one that rocked him for six hours one time whispering its okay mommy loves you; its okay I know its hard until I couldn't stop crying and begging for him to tell me how to fix it. That's the first time he really looked at me again, the first time he felt remorse for hurting me...that sliver of breakthrough, that is what it took for me to fight for him. Texas was no better; it was worse than California. I had medical bills stacked up already, Tricare still didn't cover ABA therapy or even know how to get your child through the right doctors to have them diagnosed on the spectrum. Heck I didn't know there was a spectrum. I just knew that two percent made it into adulthood able to function.

My spouse deployed in 2005 for his first tour to Iraq. I had three kids under seven, just misdiagnosed Bipolar and given medication that was a nightmare and did perm damage. I divorced my husband. I couldn't handle doing it on my own. I thought anyway. I was just miserable. I had no hope for my son. He was four, no potty training, barely started noticing a cartoon but was only fixated on one episode of rollie pollie ollie for three months. We had Wiggles Big Red Car Dance hour every day for almost a year. He started to strip down to a diaper, no clothes in the middle of winter. He didn't like anything mushy, creamy only crunchy and salty. Heck the kid new the difference if you put baked from home nuggets in a mcdonalds carton.

In fall of 2006 was when he was old enough for preschool. A year in the Army and never once was I told about EDIS or EFMP, or of early screening or anything. Nothing. I went to the school a street down where my oldest attended to be told they wouldn't take my son because he wasn't potty trained. I wanted to punch the lady in the face and then my son stripped naked screaming and I was taken into the nurses office reprimended for the behavior of my child.

I moved off post. I found a school that could service him and it was a block away. Service him for Autism though? Nope. No one would diagnose him; he was only given services for a speech problem. And in the two years he was there he repeated prek. He dislocated his teachers jaw. Bit down on metal chair legs, stripped naked, ran all over campus, crawled into his cubby and fell asleep with his bare ass hanging out. I told the teacher if she called me again to come get him I was going to get fired and she would have to throw a blanket over his ass.

I didn't even know about sensory issues until his teacher recommended it and I looked at her crazy...you want me to do what? He is violent in school daily yet you won't document on an IEP that he has a BIP in place and you want to put him in the regular class next year and he is five years old...still in diapers...still won't talk. Are you kidding????

I remarried in 2007 and I had no idea that spanking or yellling made the behaviors worse and I resorted to it because I was desperate. Nothing worked. When we came up on orders to Germany; my ex was dating and marrying a psychotic woman and I wanted far away but I decided against my better judgement to keep my son in the school one more year. I wanted to make sure I was settled and scoped out services and doctors first. Plus I was pregnant with my fourth child; his older brother was going to live with his father and I couldn't fly with my child, being seven months pregnant by myself with a violent child thrashing around internationally I just couldn't.

I paid the price, him staying in the school finally got him talking and his diapers stopped when he was six years old. He still hadn't done academics but heck we got somewhere. Then they hid my son and refused to give him and fought for custody of him while I am stuck in another country with a newborn that still has no passport and a husband deployed for 15 months. I did it, I won appeared over the phone in open court; left my two children with friends I barely knew a year and did a three day turn around. Brought my baby home.

Oh wow was I infuriated as well. They had done nothing for him. We only had finally a diagnosis of Autism thanks to EFMP having to screen us going overseas and his records didn't come over whole and the school never forwarded them even though his new school harassed TExas. My son was a zombie. The first time he had a meltdown I was crying in relief. I found out later he had been hit with a belt and forced to not play with other kids, to be "normal" when he didn't know what normal was.

School was hard...they had never before had a child as violent as my son that doctors refused to medicate because I had good doctors...they felt that he had to relearn what the right way to behave is and how could he do that if his mind was not clear. It was an easy way out they said. My exhusband wouldn't have agreed anyway and it would have been another battle in court so the poor school had to put him in a class alone with a teacher, remove everything from the room. I can't begin to explain how many times I chased a child in a ninja costume around post or how many times the Mp's had to come let me in my apartment or how many times my head start daughter had to push a stroller as I dragged a kicking and screaming child to and from school.

It was so bad our routine was written literally minute by minute...7 am warning wake up 705 take of shirt 708 take of jammy pants....but eventually he got a little better. The next school year he began first grade and did the first six weeks in a GE class with a teacher that used all sorts of cool technology because he knew how to teach for inclusion. He had never taught GE before; he had been special edcuation.

They made his IEP, BIP whatever they did so detailed when we came to GA we wouldn't have any issues...oh but we did but that is another day.

Now in one year my son is in second grade; he is grade level, he has his first two friends ever both Autistic and live on our street. He dresses himself, does his own homework, cleans his own room and for the first time ever....two weeks ago he sat down with tears rolling down his face. I just braced for the chase...No violence in a year but the running did happen on times he couldn't verbalize his emotions. I asked what was wrong rubbing the top of his head...he always liked that. Big crocadile tears are sliding down his face..."mommy, my daddy doesn't love me and I am angry and sad"...OMG....so I asked why he thought that, dad lived in CA and was just really busy. "mom don't like it makes me nervous when you lie" my daddy doesn't love me or he would have come see me its been two years mom.

Yeah made him tell his dad but it hasn't done anything. But my son is close to my husband. My husband is the one that got the behavior under control. I nvever thought I would be able to see him date or drive. Heck he was six years old barely peeing on a toilet and not talking. My son is here with me in my world ninety percent of the time. I allow the slip back sometimes, he deals with his sensory overloads that way...but if its too long mommy is reaching in Andrew world and yanking him back...I am not losing my son again.