Dear Mom –
Well – I faltered. I couldn’t type late into the night last night. I passed out hard after 6 short nights. That is that. The natural consequence is that I type 2 entries today. One this morning. One tonight.
Yeah. The natural consequence in getting back on track is me trying to type and think while B (he’s 6) talks incessantly across the table from me. When he is not talking – he is making sound effects. The whole while – he moves back and forth from one end of the table to the other. In this way – he is not much different than his 14 year old brother. What is different? He has been transcribing Lego catalogues off-and-on for 7 or 8 months now. He has 3 sheets of paper front and back (so 6 pages total) taped together to make a long horizontal scroll. These pages are covered (20-25 sets per page) with every set he can find in the catalogues we have around the house. He calls it – get this – his “Christmas List.” This morning – he taped on a 4th sheet. My job is to dictate as he writes them. He hasn’t had this list out to work on in over a week. He sees me open the computer to type and immediately pulls out the list instead of turning on cartoons. It’s a game. I won’t offer cartoons – although I SO desperately want to. I’m to live in the moment, right? Appreciate this precious time of life, right? Yeah, yeah. I get all of that. But let’s get real – Right now? Right now I just want him to go turn on some Rescue Bots. Yep.
As I was typing that – he looked at me and asked if he could turn on some Rescue Bots. Guilt – like he read my mind – or at least my vibe. No winning here. I took a time out and snuggled him on the couch – just enough time to watch Blades make a daring rescue.
Well – we all made it through the first week of school. B’s multi-age class is going to be the perfect fit for him. He loves his teacher, and he is comfortable with his other 1st grade aged classmates. B is shy on the front end – always – no matter what the situation. We had no idea who the other same-age students would be – made me nervous – as he will spend the next 3 years with the same group. My worry was for not. I did pray for the best for all concerned on the front end. It seems that is what’s happening.
I try to remain hopeful and positive. It’s easier with B. He is a typical learner – actually a bit excellerated. This is a kid who started organizing his toast cubes at 9 months, wanting homework at the age of 3 ½ – painting still lifes and writing on his own at age 4. We got him a workbook and he blew through it. He started sounding out words and writing phonetically – on his own – no prompting from us. Reading came naturally for him in kindergarten. All of this to say it is much easier to trust the system when you know your child is self-motivated, organized and loves worksheets. This is so much different than my experience with E eight years ago, Mom. I still shake my head when I think about what I went through with E – and what I have continued to go through in his educational experience – with only short reprieves.
I am so happy that E’s first week in high school went well. He is so happy in Drama. This is a class that all of his IEP team in elementary felt he would excel in once in Junior High. He’s exuberant, funny and quite dramatic once he gets to know people. He’s shy and awkward (self-described) when he doesn’t. I brought this up many times to the Junior High counselor and LRC teachers – all 3 years. I asked specifically if the Drama elective time could NOT overlap LRC classes EVERY year E would be there. I let them know that it wasn’t just for E – that Drama actually helps kids on the spectrum – socially. It also helps with an Aspie’s self-esteem. I just wanted them to look at the bigger picture – considering there is quite the population of these kids in our community.
From Tony (the Asperger’s guru) Attwood’s book, The Complete Guide to Asperger’s Syndrome:
“Another option to help the adolescent who is sensitive to being publicly identified as having few friends and socially naïve is to adapt Drama classes…
Lianne Holliday Willey, in her book , Pretending to be Normal, describes how she improved her social skills by observation, imitation and acting (Willey 1999). This is an appropriate and effective strategy, especially in stage three of friendship development. The teenager with Asperger’s Syndrome can learn and practice aspects of adolescent interaction such as suitable conversation topics, the art of being a good listener, expressing affection for someone, and when and how much personal information to disclose. Drama activities can teach appropriate body language, facial expressions and tone of voice, and provide an opportunity for the young person with Asperger’s syndrome to act and rehearse reponses to specific situations, such as being teased.” ~Tony Attwood
The other piece for E, in particular, was the social interaction. I wanted him to be part of a group. He does not play team sports. He has no interest in competition – in any way, shape or form. He is in Boyscouts – but even there – clicks form. He’s not in one of them. Over this past year – especially this past summer – he is noticing that he has no one to just hang out with. To watch him come to realize this enough to express it is painful.
So – anyway – the request for Drama – at least one semester of it – fell on deaf ears every year. We were really disappointed. They suggested I have him audition for community productions. I explained that putting a kid with Asperger’s on the stage to audition was completely different than actually having a drama class (of which is not offered in our small community). I got no response. As a matter of fact – with each passing year – I got less and less of a response on anything I emailed or called about. I could go off on a tangent here – but I won’t.
I really am glad we all made it through this first week in such a good way. B is golden. E is happy. I can’t help but hold fear as a back drop, though. It’s not unfounded.
The thing that terrifies me about E’s happiness is the pattern of the past three years. I feel we were played. No. I don’t just feel we were played. WE WERE PLAYED. I’m not talking Drama now. I’m talking assistive tech. Assistive tech he was trained on in elementary and was taken from him in middle school. From the beginning – on through to the end of middle school. Here is the pattern. Teacher is nice, conversational, seems to have E’s best interest at heart. E and I happy – excited even. Teacher does not follow through. Sad. Dissappointed. Try to contact. We are ignored. Squeak louder. Response. School promises. Happy. More time passes. You realize there is no follow through. Disappointed. Squeak. Ignored. Squeak louder. Teacher says whatever she needs to. Doesn’t follow through. By then it’s the end of the school year. It’s time for the IEP meeting – they rush you through that. In doing so tell you that the thing that was on the IEP that you have been squeaking about? Well – they just don’t do that. AND – they are rude in doing it. She is no longer Mrs. Nice Guy. You get the feeling you are being looked at as the enemy for being persistent. You walk away thinking they have the right to do that – just say they “don’t do that.” You get info from respectable outside sources (quite by accident) that says they don’t get to just say they “don’t do that.” You bring that to their attention. They act like it was all just a big misunderstanding (because they have been caught) – and the cycle starts again for 7th grade. By 8th grade – as a parent – I was just pissed and expecting people to lie to me, avoid me and do whatever they had to do to skirt around me and the issue and not do whatever it was they didn’t want to do. Yes, WE WERE PLAYED – and – unfortunately – E PAID THE PRICE. I could go on. Might late tonight – because you know what? What I have to say is important. What I went through this last year? It’s important and might help another parent out there going through the same thing.
Our kids have rights. Our kids are not “less than.” The information and technology is there – to help our kids succeed in life. There is a tech budget for our district. A sizable one. Special Ed kids have just as much of a right to that technology and a successful future as other kids. For these Aspie and/or dyslexic kids – it’s all there cognitively, and the resources are there for teachers to help them thrive. Do special ed teachers need training – to use the resources that are available to help kids with behavioral challenges and work with their dyslexia/dysgraphia? Yes. Do they need support in getting the training they need? Yes. At times – do we – as parents need to find help with behaviors outside of the school – in order to help our children function better in the classroom and – therefor – help with the teachers’ overall stress level? Yes. It’s not all on the teachers. There has to be a willingness on the parts of all parties involved. Student. Parent. Teacher. School. District.
There needs to be a paradigm shift around this. Eyes need to be opened. Hearts need to be opened. Communication needs to occur. In order to really help these kids – the teachers need to be open-minded to not just helping their “gifted” students. Because you know what? On the flip side of each of these Aspies’ and/or Dyslexics’ learning challenges – lies a gift. That gift – if honed – is what will make them a truly functioning member of society. Ignoring their gift and just pushing them through to graduation by saying that they know what they need to know – when they don’t – is not just dishonest. It’s actually cruel. It’s setting these kids up for a world of future hurt.
More on this subject later.
Dang – but I hope there is a shift this year – that we really are heading into a new era. I do.
I’m doing my part. E’s doing his part.
I need to breathe and do the laundry.
It’s a hang-the-clothes-on-the-line kind of a day. 75. Sunny. A nice breeze.
Have a great day sprinkling fairy dust – or lounging on clouds – or whatever it is you do all day.
I love you.