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The Backstory – Part Four

Chrisa Hickey

Ok – so tomorrow took a bit longer than I thought. Life happens.

So – where were we? Oh yes – Tim’s first therapeutic day school in Illinois. Without naming it – but think of a musical starring Robert Goulet and you’ll get it – it was an unmitigated disaster. This program does great with autistic kids, but with a kid like Tim who, in all fairness, we weren’t totally aware then, was all about anxiety and psychosis, it was chaos. Tim had to be physically restrained nearly 50 times in the 18 months he was there. The last day there was interesting – I went to pick Tim up to take him to see a new psychiatrist, and he attacked me, in the classroom, in front of the entire staff. They were horror stricken, but to me, it was life as normal. I was used to being beat up by my 11-year-old.

That led to Tim’s first inpatient hospital stay, also an unmitigated disaster, but I’ll save that for another post about what to do if your child requires hospitalization. If I knew then what I know now, that first hospitalization would have gone far differently, particularly in how we interacted with the staff and doctors.

Tim came out of that hospitalization and into another location of that same program, but that didn’t go much better. On the typical day, Tim’s anxiety level would elevate, and he’d be chased around downtown Des Plaines by a staff member for a good portion of the day.

Tim was on four different meds and had three inpatient stays in 2006, and near the end of the school year, the therapeutic school gave our district 30 days notice that they couldn’t serve Tim any more. He’d been asked to leave his second program in Illinois, fifth over all.

More later.

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The Backstory – Part Three

Chrisa Hickey

Hell broke loose alright. Tim was put in a special ed class with a teacher that thought special ed meant that he just needed more time to do assignments. If he got up, she would get huffy with him. If he talked, she would reprimand him. After about a month of that, he couldn’t take it anymore – and expressed his displeasure and anxiety with her by throwing desks at her, or pencils at her, running away from her or biting her. We tried to intervene – they tried to expel him – neither of us succeeded. He repeated this behavior with the next teacher the following year, but this time it was mostly running away – all the way off campus and around town. The school couldn’t keep him safe during school hours.

The special ed department called us together and suggested that Tim go to a full-time therapeutic day school. We went to visit a few and selected one that specialized in autistic kids. Remember, we were still working under the diagnosis of autistic.

He lasted 10 whole days before they asked him to leave. They couldn’t handle his rages. He raged more at school than at home. Looking back, it was because his anxiety level was much higher at school, but we didn’t know that then. He went through three therapeutic schools in four months, all asking him to leave. We didn’t know what to do.

We ended up leaving California for Illinois, for a number of reasons, but one was the schools. California schools just weren’t that great, especially for special ed kids. We got to Illinois, handed them Tim’s IEP, told them he was in a therapeutic school, and waited to see their response. They decided to continue that, and put him at the first therapeutic day school he attended in Illinois.

More tomorrow – I promise!

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The Backstory – Part Two

Chrisa Hickey

So – what do you do about a kid who doesn’t talk at age 2? We went to our pediatrician. He told us our son had ‘second child syndrome’ – basically, his big brother did all the talking for him, interpreting his noises and anticipating his needs, so his speech development would be delayed. And we bought that. After all, our oldest was good at interpreting a grunt as meaning, “I want juice,” or “he’s hungry.” Tim also started showing his frustration, we thought, with the inability to communicate. He’d do everything from throw a toddler tantrum to, no joke, one time picking the twin sized mattress off his bed and throwing it at us.

By the time he started pre-K at age 4, Tim had only two and three word sentences. He would say, “cool bus,” when the school bus went by, and baby talk like, “I hungy,” when he was hungry. His pre-K school backed us up, and suggested he be tested by the school district and that we go to a neurologist. Which we did.

After days of testing of all types, the neurologist told us Tim had PDD-NOS, or a pervasive developmental disorder, not otherwise specified. I didn’t know what that meant then, but now I know it is an autism spectrum disorder that basically means they have no clue what’s wrong with your kid. The neurologist went so far as to tell me that he would have diagnosed my son as autistic, except he has excellent eye contact and a good sense of humor. Those two things alone preclude most autism spectrum disorders, but again, I didn’t know that then. So we went on our way, thinking our son had an autism-related disorder. The school district developed an IEP for him, and in Kindergarten, he was placed in a mixed classroom, meaning, mixed special needs kids and mainstreamed kids, with teachers for both.

New and not at all pleasant behaviors starting coming out at age 5. He took to hiding under furniture or running away from his class rather than participate. He had very high levels of frustration – the smallest thing could set him off. And, while his speech was improving with speech therapy, the school district didn’t think they could keep him in the blended classroom, because he was just too much of a disruption.

We moved back to California from Georgia just before he started the first grade, and had to go through the whole ordeal with the IEP and the new school district again. They decided to put him in a self-contained special ed classroom with the addition of speech therapy twice a week. He had an amazing teacher there, and she did wonders to figure out what his stress triggers were, and how to get him to calm down and focus. Tim’s speech and ability to participate in class improved tremendously in her class. We felt he was nearly caught up by the time the school year ended. Since this teacher taught a combined first and second grade, we asked for him to be in her class again, but we were denied. And all hell broke loose the next school year.

More tomorrow.

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The Backstory – Part One

Chrisa Hickey

So I guess I should start from the beginning, right?

Tom and I were married young, at 23. Not teenage-young, but a lot younger than most people get married these days. We had our oldest son right away, and after he was about a year old, we thought we’d like to have a second child.

But after a year of trying, I still wasn’t pregnant. We went to a fertility specialist who, after months of tests, meds, and monitoring, told me that I would probably never get pregnant again. Why is another story for another blog. But there we were, at 25, being told we were infertile.
It took another year for us to get over that before we decided we still wanted a second child, and to start looking in to adoption. The first thing we learned is that, when you want to adopt, you start telling everyone you know that you want to adopt. We read in books and heard from others who had been through it that it can take years to find a child, particularly if you want an infant, which we did.

It didn’t take that long for us. We heard about a friend of a friend of my parents of a woman who was looking for parents to adopt her unborn child. We met her parents (she didn’t want to meet us, and to this day, still hasn’t), provided information, showed them our home, and, after a few weeks of discussing and disclosing, they chose us as the adoptive parents. We were amazed. It had literally taken us just 4 months from the time we started talking and researching adoption until we were chosen by a birth family. And if that wasn’t quick enough, the child was due just 10 weeks from when we were chosen. Tim was born – Tom and I were 27 years old.

We didn’t know – and still don’t know – everything about Tim’s biological family health history, but we do know that both of his birth parents are cognitively disabled. We weren’t concerned – cognitive disabilities are not genetic, and every child has the potential to have special needs or be a genious.

Tim was a very happy baby, and by age 2, he was reaching his developmental milestones in normal time, except for one. He didn’t talk.

…more tomorrow.

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Welcome

Chrisa Hickey

Imagine it – a new baby, beautiful, bright, happy. What a good baby – sleeps at night, eats well, smiles and meets his milestones.

Then – at year 2, still no words. Year 3 – rage – uncontrollable rage, for no obvious reason.

Year 5 – fleeing from teachers, hiding under desks. Year 9 – getting expelled for throwing desks, biting, kicking, punching. Still can’t read.

Year 12 – self-injury, suicidal thoughts, psychiatric hospitalizations. Can’t be in school. Year 14 – pacing, talking to himself, violent, homicidal, suicidal.

This is the story of my continuing journey, raising my schizoaffective son. I welcome the curious, the cautious, the afflicted and their friends and families.

 

Image by Alborzshawn

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