Screw you Daylight Savings Time!

It's that time of year, the time when we "spring forward" and gain extra daylight, anticipate the arrival of spring and most importantly LOSE AN HOUR OF SLEEP! In an autism household- sleep is a precious commodity, one that is horded like fine jewels or our favorite wine.  Nighttime wanderings, odd sleep schedules and the like is something that most parents with kids on the spectrum endure. Melatonin is the Autism parent's best friend. But when those clocks change-  at either time of the year- it can send our kids into a tailspin that can take a while to recover from.

The Boy, like most autistic children, NEEDS structure and routine. He doesn't like abrupt changes in plans, although as he gets older that seems to be getting a little better.  But when things don't go as they should- in his mind anyway- it is prime time for massive frustration, irritability and possible meltdowns. The time change   is not just an inconvenient part of life for him. Having extra daylight means absolutely nothing to him. The clock on the wall and his internal clock are now different. While his body (and the Melatonin) are telling him one thing- his dad and I are telling him something different- and it messes him up. 

In years past- the time change has been a source of agitation for the whole family. We have to adjust dinner time, medicine time and try to ensure that the first day of the time change he is resting, relaxing and hopefully prepared the following morning for school.  I can't count how many all nighters we pulled (melatonin and Clonidine would get him to dreamland, but would not keep him there.) He was moody, over tired, and not a joy to be around at all. Our lack of sleep made us just as irritable, and of course that made life just all around miserable for everyone. 

This year, like every other year, we will spend Sunday just relaxing, keeping things quiet and make the adjustments that are needed as unobtrusively as possible. This may help, it may not. Monday is also a delayed start at school, so that may help. 

That doesn't mean that the anxious knot in my belly is getting any better. And all of the worse case scenarios are playing on a loop through my sleepless mind. Not like I don't have enough to keep me awake at night, like the impending IEP, some odd behaviors we have been seeing lately, my work, my school...the list goes on. 

I hope that we have an easy transition like we had 2 years ago, and even last year wasn't the worst. We prepare for WWIII at all holidays, family gatherings, family outings and yes for Daylight Savings Time.  Prepare for the worst, hope for the best- my life's motto. 

I think that maturity plays into all of this, and the older he gets, the better he handles unexpected (or even expected) change. He lives by his calendar, and announces any and all holidays on it. So he is aware of DST, and aware we all lose an hour of sleep. And so far, nothing negative. 

Now if only Mother Nature would cooperate, and stop with this polar vortex and snow crap- then we could truly feel like "springing" into anything. 

Bring on the IEP!

Springtime brings a lot of wonderful things, sun, new beginnings,and  longer days just to mention a few. If you have a child who receives Special Ed services in school, it is also IEP season. That time of year when you sit in a room, surrounded by those who are supposed to be helping your child be all they can be, reviewing goals, setting new ones, perhaps transitioning to new schools (like we will be- middle school YIKES).  The IEP is supposed to be an  opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities. If you are lucky enough to be working as a TEAM and not fighting tooth and nail for any and all accommodations your child needs. 

Courtesy of http://www.kidstogether.org/parentside.htm

I remember the first time I  walked into a meeting room filled with those who proclaimed to know what was best for The Boy (educationally speaking anyway) and feeling intimidated and so much  like the awkward girl that wanted to sit at the popular kids table, to the most recent encounter when I went in to do battle and was caught off guard at how easy it was to present MY goals and not be met with "we know best" attitude. Of course that was all blown to hell at the beginning of the year when I found myself fighting for the mainstream instruction that had so readily been agreed to just a few months prior.  It didn't take me long to learn that miles and miles of red tape surround our special children's education, and that really, the IEP really is a bullshit document. Oh sure, it's "legally binding" but the loopholes and confusing language really work in favor of the school and the district- NOT your kiddo. 

You never REALLY get what you think your   child needs and the services never seem to be quite enough. 

This is supposed to be about the CHILD's education,and the fact that kids CAN learn, and need to be challenged,  not written off, assuming they can't do something without ever trying.  It's not supposed to be a PRE-WRITTEN document that they slap down in front of you and then rush through everything and hand you a pen to sign it.  

It is supposed to be a commitment to a child, MY CHILD... not a number, or a budget. The living, breathing human being who has unlimited possibilities if given the proper support and tools. It shouldn't have to be this hard to secure our children a free appropriate education. 

I have followed all the major rules for successful meetings, and for a couple of years, I actually was happy to go to the meeting, talk with everyone and would leave feeling like things were accomplished, that The Boy was in good hands, that my concerns and ideas were listened to, and there was no pressure to sign a document if I had ANY kind of reservations. That changed when we moved The Boy back to his home school district  Great schools, if your child is average to above average.  Great schools if your child will do well on standardized tests. Not so great for the child with Autism. 

The biggest argument we have had the last two years is the argument for inclusion. Children with special needs CAN be accommodated within a regular education classroom. In our case especially. The Boy is high functioning. He has been shielded for so long, not given the chance to grow his potential. The lack of faith from teacher's and unwillingness to push him just a little bit harder has him doubting himself and his capabilities. The truth is ALL children benefit from the experience of an inclusive classroom, including the reduced child to staff ratio that makes it work. It's possible. And, it's right. It breaks my heart that there are thousands of children all across America being treated as second-class citizens because they are different.  They are in "special ed" they are "weird" they "can't learn". It's all bullshit I tell you. 

This year- we will be discussing the transition to middle school. I am beyond worried for The Boy. It is going to be a HUGE shock for him. The homework, the expectations- I foresee many, many meltdowns.  I have A LOT of info I am going to be breaking out, accommodations that I will INSIST on- and will sign NOTHING until these things are included.  Things like a "Early Pass"- getting to go to his next class just before the rest of the students, to avoid stress and bullying. A "safe place" to go in case of sensory overload. Reduced homework, use of the AlphaSmart, or the opportunity to use computers and printers for assignments with a lot of writing.  These are just a few of the things I will be insisting on.  Well, those and a big bottle of wine.