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Friday, July 27, 2012

The Diagnosis

Bubs 1's creation
Two weeks ago, we officially learned that Bubs 1 is on the autism spectrum. Hearing that Bubs 1 has Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) was not a complete shock, but it was jarring to hear it as an "official diagnosis." Bubs 1's mom and I have been aware of the likelihood of this diagnosis since last December, when we were first told by his pre-preschool teachers. At that time, they suggested that we may want to consider having Bubs 1 tested. Apparently, Bubs 1 was showing signs of autistic behavior in the classroom. One indicator, that they shared with us, was his inability to break away from an activity. At first, I thought it was just a typical three-year-old learning to transition between activities. I later learned differently.


Bubs1 at a bbq
It was definitely much more difficult to accept the news, back in December. Since then, we've been slowly absorbing more information and learning about this vast spectrum called autism. As we began to separate the mainstream knowledge of this condition, with its many other areas, Bub's mom and I began to see a clearer picture. This understanding has led us to being more aware of how Bubs 1's behavior reflects that of an individual struggling to operate like other three-year olds. Most importantly, we learned how to advocate for him inside the public school domain. You would think that the public schools are on your side. They are, but when state's make budget cuts, they take money from schools. Special education programs become unfunded mandates and school officials do what they can to limit cost.

Bubs 1's mom and I decided to tell our families about his condition early on (before the diagnosis). We listened to family and friends question the likelihood of the bubs having autism. Most of them all said  the same thing, that Bubs 1 was just a normal three-year-old. Bubs 1's mom and I eagerly agreed and, many times, second guessed it all (It was just what we wanted to hear too!).

However, at the end of the day, deep inside ourselves, we both knew there was something going on with the bubs. We discussed it many times. All of these discussions ended the same. We didn't want to make a mistake. We wanted to error on the side of caution.
big brother

At the official evaluation (diagnosis) meeting, I asked if I've made this situation possibly worse by not knowing about the bub's condition while raising him at home. I immediately thought about all the times that I yelled at him or told him that he did something "wrong." I was concerned that I may have penalized him for something beyond his control. I may have, but I think all parents question their skills at one time or another. Still, I felt a sense of guilt that I may have worsened the situation.

Unfortunately, I didn't gain many parenting skills from the best teachers. I was raised in a broken home. My parents were dealing with their own struggles a few years before (and after) my father left the house. I was young and it took me many years to unlearn much of what I learned from my parents. However, there is still some anger with me. Essentially, I learned two types of coping skills from my parents. From my dad, I learned how to dismiss it all and pretend it never happened. From my mother, I learned how to yell.

Iquestion themselves

This was my concern, which I voiced to the bub's evaluator. I wanted to break this cycle and not continue what I learned from either parent. I don't want to model poor coping skills for the bubs when he's relying on his own (which are currently being learned from his mom and me). The evaluator reassured me that I've done nothing to hurt the bubs. In fact, he said he was impressed with my parenting skills (from a previous office visit I made with the bubs). I sure was glad to hear that and also glad that I'm not entirely reconstructing at home, what I learned growing up.

Anytime I yell at the bubs, I apologize immediately and tell him that "daddy is learning too." I believe the bubs understands this and he responds well to it. He's a sweet kid and has a big heart. Nonetheless, I periodically project these misplaced fears that he's learning my character defects. I needlessly worry, but I am learning to recode my past baggage as it creeps up on me. I am always wondering how the Bubs is learning, developing and especially how he is figuring out how to close his social gaps.

3-year bday
I want to teach the bubs an important life lesson: How to be himself. I hope to help him figure out who he is and be comfortable in his space. In the latter five years of my public school education (in just as many schools), I've watched a lot of people. I especially remember watching the kids who were well-liked by everybody in their class. There was a common thread among them all. None had "fronts." They were all real people. They were comfortable in their own skin. Simple. I always tried to mimick these kids, but moving so much just kept me on the periphery in most schools. My wife calls me a chameleon, she's right.

I also want to get Bubs 1 involved with wrestling. Part of his PPD-NOS involves a need for extra sensory input. We spend a portion of the day jumping, running and wrestling. It helps him reset without the need to seek it out in inappropriate ways, i.e. the classroom. Well, theoretically anyway. We're still learning from the bub's occupational therapist visits each week.

Circa 9 months
Raising the bubs at home has taught me a thing or two. First, I realize that I've reached a point where I  need a job. I need to get out of the house. Now that the bubs is ready for full-time preschool soon, I'm ready to leave the house too. Second, I've learned that this job is not for everybody. Honestly, I've struggled with it. I've learned enough to realize the Bubs 2 will be better off with a nearby home daycare. We've been impressed with the home daycare industry around this area. There are some great people willing to do one of the most important jobs - for affordable prices. I wouldn't say that for the institutional childcare industry.

I'm looking forward to working with his teachers at school. The bub's mom and I are ready for the PPT meetings. We're ready to work with his teachers and continually update effective IEP goals. We're even considering "red shirting" the Bubs in order to do all we can for him to achieve a level playing field when Kindergarten starts.

5 comments:

  1. Please forgive my overuse of commas! My grammar was never a comfortable place for me (I also had too many English teachers telling me different rules of the English language). haha... For this reason, I try to keep my sentences short and sweet (not always accomplished). The shorter the sentence the less material for mistakes. ;)

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  2. Saw this via a tweet by Megan Carolan, very nicely written and it sounds like you are doing a great job. Our son was diagnosed at age 4 (now 7.5). If you want advice (and there's no reason you should . . . you'll get more than you can handle from friends, doctors, teachers etc), drop me a line.

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  3. Hey Stuart, thanks for the post. Have you ever been challenged with your little guy's behavior during transitions? I know this is a typical three-year-old thing, but our guy is struggling more than the norm (as are we) with his.

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  4. Our guy has always had transition problems. They are better now than they were but when he is tired or hungry (or he is transitioning from a video game -- a problem you don't have yet) it can still be pretty bad. We do lots of warnings (five minutes, two minutes, one minute etc.) and did some ABA and these help.

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  5. we've been using a wall timer and a timer on our cell phones. seems to help. he's no longer wanting to nap, which dinner time tough. thanks for sharing, Stuart.

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