Forecasting

Due to a death in the family, and a very sad one at that, we have flown my mother-in-law back up to Syracuse. She was home only for one week after being with us for two months!  She has decide to stay around since we have a sleep deprived EEG for Zach next week, and my mother's hip replacement is the following week, plus our usual therapy/school/ballet lessons/homework stuff.

Having my MIL has allowed us some luxury again of being able to attend parent meetings.  Zach is one of the younger children in these groups.  This means we get to see what may be coming down the pike.  My heart usually breaks over and over again at these meetings. 

At one meeting, involving much older children, the parents were discussing how to handle behavior.  One child was consistently going into the main bathroom in the house, and screaming "blood curdling screaming" according to mom, for an hour at a time.  This is so hard because the child is not violent or aggressive, so should it be corrected?  When asked why he does it, the child says becuase he was angry or frustrated.  We all like to scream once in awhile, understandable.  However, hours worth of it is hard on the parents, and the parents are concerned what the neighbors are thinking!   We discussed trying to add a timer and constraining the screaming sessions to no more than 15 minutes.  Perhaps, even trying to fade it back one minute at a time if he did respond to the timer.

Another issue mentioned - autism boys and holding their "gear" - apparently very common and frowned upon in a school environment.  The child's psychiatrist told the parents to make a bear from the Build A Bear workshop and add weights to it.  Well, I am no behavior analyst - but I think the object of the redirection is likely going to raise a few eyebrows when the child is 15.   One parent said they sent their son home with some sort off lego figure they made. The child could carry it in his pocket and it has been very helpful.  I really liked the idea - it was so great that the parents found something that worked for them.  Would it work for the other family?

Then came another family posing their issues to the group.  Their son, after several years of being told ADHD, was newly diagnosed at age 7 - PDD-NOS.  He was riding a typical bus and apparently the kids were picking on him, although the child didn't perceive it that way.  As I have read with a lot of children on the spectrum, they are excited to receive attention from peers and refer to the kids who taunt them as "friends".  They do not understand the ill will of some of these kids.  So, this little boy's "friend" had scissors on the bus, and said to the little boy "I am going to cut your backpack, OK?" .  The mean little sh*t proceeded to cut the backpack up.  When the child arrived home, he said nothing.  When mom discovered the damaged backpack later that evening, she asked her son what happened.  He said "My friend on the bus cut it up".  So the school district was notified and then, well,  nothing; they didn't respond.  The principal insisted that couldn't have happened.  Meanwhile, on the playground, this child was being surrounded by kids (one of them the backpack cutter) and the kids were taking turns spitting on him.  After mom found out about this, she confronted the school and asked where the one-on-one aid was during these events (as stipulated in his IEP for during recess).  The school's response?  We don't have enough staff for this. But it is in his IEP!!!! After 3 months of the parents not letting up, they finally met with the backpack cutter and his parents, and the boy admitted to cutting the backpack.  He was told not to do it again.  And that was that.  No major reprimand.  Beyond having mean and inappropriate behavior- what about having scissors on the bus!?!?  Hello? 

The story gets harder to hear as the parents then discuss how they requested to ride the bus with the child, and the school district refused, saying it was against policy.  After pushing, they finally got a special needs bus to pick up their son.  While on his new special needs bus,  a Camillus fire department truck proceeded to run a red light, strike the child's bus, and the child was ejected from the bus on West Genesee Street - a fairly major and busy road way in our town. (Mind you the fire dept truck did not have its lights or sirens on either.) The child immediately got up and ran across the road and got back into his seat, and as they later found out "because that is where I am supposed to sit".  The parents were not immediately notified that the child had been ejected from the bus.  They were confused about the extent of his injuries when they first saw him.  No one offered up the information.  As mom recalled the story to our group, dad - a 6 foot two, 250 pound guy, in an athletic sweatsuit who looked like he could pretty much take anyone on and win, proceeded to cry.  Talk about break your heart.  Although I am not a guy, I believe I had a pretty good idea what this guy was feeling. As a dad - his role is to protect his family, and here he is, helpless, and exacerbated by the school district and their inability to protect his son combined with their purposely poor communication with the family. 

Of course, lawyers were suggested in dealing with all these cases.  But most of the families are working class folks in a bad economy who don't feel they can afford that.

These stories, and other stories that were told that evening, were very hard to listen to.  The consistency, regardless of school district, was even worse.  I think Steve and I had a glimpse of our possible future, and it really was hard to hear.

A family group meeting I went to later was a lot less heart wrenching- probably because the kids were mostly younger and not entered into school yet.  They were, nonetheless, frustrated with behaviors and other situations.  Two of the moms talked about their sons' tantrums.  Now that their children were getting older, and heavier (50-60 pounds) it was getting a lot harder to contain the kids during public meltdowns.  They were discussing that slowly and surely they were figuring out the triggers of their sons meltdowns.  However, some things just seem unavoidable.  What do you do when they run out of chicken nuggets at McDonalds and your kid is a flailing mass on the ground with 25 people all staring at you with looks of horror and disgust on their faces?  Injuries sustained by these mothers are pretty scary - bites, scratches, bruises.

These moms were encouraging me that Zach will one day speak, and that their sons were a lot like Zach when they were 3 and not producing a lot of language.  They recalled the "aha" moment when their kids developed language functionally.  It was wild to hear how the kids went from non-verbal to speaking in grammatically correct appropriate sentences within a year's span.  This of course gave me hope.  At some point, however,  I noticed a  mother sitting quietly in the group.  I sat next to her and asked her about her son.  She was a single mom - and her son was still non-verbal even at 4 1/2.  She probably was wincing at the mother's encouragement that Zach will be like their sons.  Yes, there is a spectrum.

Steve doesn't have as much experience as I do hearing the stories from other parents.  This certainly is very eye-opening for him.  At least we are lucky enough to see the battles we are likely face in the future - many of these parents had no idea if what they were dealing with was common place or not.

Are these stories our future?  Much like the Syracuse weather, it's almost impossible to forecast - but we know there will be snow.