Tuesday, February 1, 2011
Big School - Send me an Angel (armed with tissues).
In two sleeps my firstborn will be facing the biggest day of his life so far according to the milestone markers. J is about to start big school.
So much has gone on over the school holidays between preschool and this mysterious, scary big school place and I'm not sure any of us are truly ready for what lies ahead but the time has come.
Since leaving preschool J had had a set back with regards to behaviour and it's difficult to tell whether this is simply because of the routine disruption, services and usual appointments ceasing during the break or if it's because of his anxiety over the big school milestone looming.
To say this transition has so far been disastrous is the understatement of the century. J was originally enrolled in a mainstream school within walking distance in our little community and it looked as things were going to go very smoothly. Funding was promised, understanding was expressed and confidence was fostered. Until a funding meeting went pear shaped to say the least. I was invited to bring along members of "team J" which meant that the school invited me to bring professionals or "experts" as they are widely termed who work with J to help the school apply for and allocate appropriate funding for a teachers aide and any other requirements he would need because of his ASD diagnosis. During that meeting, my "experts" who were there at my own considerable expense, were largely ignored by the school "side" of the table and in fact they were very rudely dismissed when elaborating on positive behaviour strategies that Jackson responds to as the school "side" brusquely pointed out the appointed class teacher had over 30 years of experience and those were standard teaching practices not worthy of mentioning in a funding meeting. Those strategies were much better left until we had a "process" meeting. I was just as surprised as my experts that there were even any more meetings to be had and was taken aback the many meetings each had categories for certain topics of conversation and strategy with regards to accomodating my son's right for an education..... (Getting fired up thinking about it again....).
It was also in this funding meeting that I enquired as to what sort of in service training the staff/teachers would be doing in preparation for J's different learning style as it was common knowledge that the school had only seen one other student with ASD go through the school (which I thought meant they had little to zero experience with all things ASD but was corrected by them that it meant they had a WEALTH of experience with all things ASD from their one student). I had offered to pay for several courses and seminars with notable ASD experts for the teacher to attend so I was keen to see which ones they were going to take me up on.
Loudly and proudly I was informed that the entire staff was going on an in service training course to prepare for J's arrival and that it would NOT be any expense to me. I was thrilled! What course?
Safe Restraint Practices.
I thought, "WHAT THE F*CK?" (Sorry).
I said, "I beg your pardon?"
Safe Resraint Practices.
A few deep breaths later I conceded I am fine with the staff doing that course but only if it is done in ADDITION to a course that might teach them how to TEACH my child with a superior IQ but a different learning style so perhaps there would be a greatly reduced chance they would ever need to use their Safe Restraint Practices knowledge.
It was not to be. Many emails, a less than satisfactory orientation visit and sleepless nights over the thought of handing him over to a school that I truly believed was coming at ASD from the entirely wrong angle, I wrote them a letter explaining we had accepted a position elsewhere.
My little guy who we had worked soooooooooooooooo flaming no I'm going to just say it how I'm thinking it..... So fucking, unbelievably, exhaustingly, fucking, (sorry again) hard to get ready for mainstream education was now going to be placed in a private ASD specific class in a religious school in preference to a mainstream school because of the safe restraint practice attitude (we are not religious, nor are we of any standing to afford the fees for the private ASD class but we took the place).
My son is not being placed in this class because he is intellectually unable to cope with mainstream material. He is being placed in this class because we had no acceptable option to suit his needs in our opinion. He is NOT going to school with his peers and he knows it. The big killer for me is that bit. For the first time J has verbalised he is different and that he doesn't like it.
I know he IS different. I don't want him to be any other way. I adore him. It's very hard seeing him struggle with it. I do not adore THAT.
The school we accepted this position in, is also the school where many of his friends from preschool will be attending their first day of school with their shiny new uniforms, school bags and hopefully big smiles on their faces as they wave goodbye to their no doubt teary mummies who are proudly enjoying such a lovely milestone (yes, I know the first day of school is hard for everyone regardless of special needs or not).
Those kids though (his firends from preschool) are not in J's class. J's class is called the "autistic unit" according to the school information handout. "Autistic unit." It sounds wrong. Is the unit/building itself autistic? Is the door very rigid and the windows a bit repetitive? Do the desks have a special interest perhaps? Is this why the unit is autistic? Of course not. It's because the children inside that squashy room have autism. The children with autism (yes I know it's just semantics but I despise the use of describing people as autistic as though that's who they are, what they are and how they are as a total being. Autism is a part of them not their totality, I digress.......). So anyway, the children have autism inside that squashy room that seems so so so badly set up for children with sensory difficulties with huge walls of distracting cluttered shelves full of toys and things far more interesting than the teacher for my sensory seeking guy who will have those shelves ripped down within days I predict. Don't read that and think I have any objection to J being in a class with children with autism or am weirdly discriminatory about other children with autism. I am not. It's just that I've lived in a world of inclusion..... No..... J has lived in a world of inclusion at preschool (I'm crying now and letting it all out as I type about lovely preschool that is not squashy and segregated). It was inclusive and supportive.
That's what school SHOULD be. Oh sure they talk the talk. We know J will have "access" to the mainstream children at recess and lunch. He will have "access" to the mainstream classes as time goes on and join the other children for music, sport and church (I wont even go there on the religious expansion of his learning.......... I respect all religions but subscribe to none and have no desire to so the religious element is playing a part in my overall blah about this school thing, anyhoo, like I said, will leave it there)....... So they talk the talk.
Not sure they (school) are walking the walk. The school handout tells me of a wonderful caring environment where we are welcome to join in and volunteer at school and be a part of the P&C etc. I am currently feeling blah about that though (and bitter if the truth is told). I think about that song all about sunshine and lollipops with all the talk of loveliness and happy families skipping into school each day........ BUT! The parents of the children in the "autistic unit" were not invited to school info night, our kids had seperate orientation days for all but one day and that was the one where Jackson saw his friends from preschool and asked me why he was not allowed to join them.
That was the moment with my heart torn in a million tiny pieces from the millions of tiny pieces it was already in from the millions of other times it's broken for him that I found myself questioning the decision to accept the supported place in the ASD class over the non supported place at the school where they ignorantly thought they would need to restrain him. I realise though my "choices" were not really choices at all. They were total inadequate crap and probably neither are really suitable. Now I am facing the task of sending my boy who was so very popular and accepted for his quirks at preschool into a class that announces he is different and segregates him from the "norm." (Speaking of terms I despise. The norm?)........
What have I done? Was this decision really for J or was it so I (yes, me.. not J or maybe both of us but definitely me) felt supported and babysat by the teachers who DO understand ASD through the experience of far more than one previous student.
Did I really jump at this class where I thought the sheer numbers of teacher to student ratio would make all the difference to J's future or was it because I was tired.... Was I so tired from all the fighting to get him ready for mainstream that I was too burned out to fight DURING mainstream and blaze a trail for those who come after J at the school who would surely have learned pretty quickly their restraint course was a total waste of time and money and that with a few tricks and compromises we could have worked it out in the mainstream.......? What was my reason? I don't know. I'm tired now as I write this. Tired of fighting for every crumb thrown at special needs, tired of explaining everything in minute detail with visuals, tired of crying, tired of being bloody tired. The ASD class in theory means the fight shouldn't be as bloody. In my mind I thought it would mean things would be easier for Jackson (and me).
He hates it. He hates that squashy room. He cries and has ferocious meltdowns (to the point where I wish I had done a course in that restraint bizzo). Every time he has gone to the school for orientation he has told me he does not want to go to big school. It was particularly brutal the day he saw his friends but was not allowed to join in. I'm told he will be encouraged to play with his friends at break times and not to worry. The teachers are lovely and I know deep down J will settle in but for now he hates it and I think we both feel a bit excluded by this choice.
The school holidays have been frought with change for him and it's making things worse. He finished up a 20 week ABI program (autism behavioural intervention FYI centred around school readiness ironically) so the routine was changed there. His weekly occupational therapy appointments stopped over Christmas so the routine changed there. We went on our first family holiday post ASD diagnosis (armed with many many visuals and "behaviour" strategies) but the routine changed there. Christmas and all it entailed set anxiety levels HIGH. We had a very big disagreement with my inlaws and boy oh boy did THAT set anxiety levels high in general family life as well...... Both boys would have sensed the tension during that without a doubt. All that and his clear disdain for anything big school related.
Buying the uniform was not pleasant... MELTDOWN. Buying the shoes was not pleasant...... MELTDOWN. Reading the social story I painstakingly put together complete with pictures of his friends trying to explain they will be in the playground just not in his classroom...... Not pleasant. MELTDOWN combined with furious ripping up of the social story. No excitement. Just meltdowns. Heart ripping, collossal meltdowns that make me think I have made a heart ripping, collossal mistake.
I'm not writing this to drum up encouraging comments from anyone telling me it will all be ok and that he'll skip into school with a cheerful wave and life will be great. I'm not writing it to drum up any comments really. Millions have gone before me and have a wealth of experience with big school transition. Many had terrible, heart wrenching experiences and many have had great, happy, feel good experiences. I know what's ahead. It will be hard at first. The meltdowns are unlikely to disappear like magic. It will take time......
I'm writing this to clear my head. To mentally prepare and make room for the fortitude I need to walk in that damn gate on Wednesday with J and be calm for him. To be a picture of confidence and positivity. I'm just getting it out. I am writing this to pour out the anger toward the unfairness of limited choices, funding options and poorly set up education systems that have shown me no evidence of inclusiveness to my son yet.
I'm writing this to have something to look back on (I hope) and wonder what on earth I was worried over when J is settled, happy and telling me of his friends and lovely days at school filled with new learning andsocial experiences.
I needed to write this so I can clear it all out and have space inside to be brave for my boy.
I need a way to turn resentment into excitement. I want so desperately for us both to be as happy and excited as when we are swinging up high high higher together and laughing at the park. J is always the one encouraging me to go higher at the park swings.... It's like it's a metaphor for our lives. I really think it's him who encourages me just as much as I encourage him. We are a team but our little team needs a coach right now to help us swing higher. I hope I have not underestimated him in order for me to feel safe. I hope this choice of schooling sets the pace at a nice comfortale level with the room to go high high higher as he grows to love big school. I hope so much.
I need a guardian angel just for one day to look after us both as I kiss my beautiful boy goodbye on the first day of a big exciting milestone to be at and for me to hold it together.
Don't worry though. I'll be fine. I promise. I'll smile and be brave. Hopefully my little guy will too as he reaches higher than I would ever be as brave as him to aim for.
Good luck to my first baby on Wednesday and throughout school life. I am with you my J. Mummy is by your side all the way whispering in your ear that we can go higher together.
***Post note: I wrote this early today and was not sure if I'd post it or not...... I was worried about my raw feelings about the name of the class in the school handout (which is not the same as it appears on the class door, it is called the learning support class on the sign) and my feelings about inculsiveness going out there for all to see..... I was worried and unsure if I should post it or just keep it for me (I do that sometimes). Before I posted it but after I wrote it I received a message from our beloved Vicki who I wrote of in my previous post (and many others). Vicki was J's preschool teacher's aide who gave my son his butterfly wings and helped him out of his coocoon so to speak..... Vicki has contacted the school and arranged to be in the classroom for J's first day to help him settle in and help the teachers deal with his anxiety. She is doing this in her own time. There is no funding for this and no one asked her to do it. She is doing this because she loves my boy. My guardian angel appeared. I thank her. My gratitude for her help in turning that resentment into real excitement is immeasurable. This is why I decided to post it it in it's unedited and raw form in the end.