I’ve not posted on the site for a long time, this is mainly due to my personal struggle coming to terms with Lewis’s (still quite new) diagnosis of Autism.
Why post now?
I find myself after years of experience with Tourettes, with schools, with other parents, completely stumped.
The past 48 hours has left me with such a mix of emotions, I have been angry, I have cried buckets, I’ve felt lost and alone, I’ve felt empowered by the ever awesome tourettes community and their support and advise. Every emotion I have felt a million times over each one seemingly repeating again and again.
This year was a big change for Lewis, new teachers, new area’s of the school opened as it has grown, a new classroom in the new area, an influx of new children. New head teacher, even new lunch time routines as he gets that little bit older and is no longer eligible for school meals so he has a lunch box.
All these changes along with a new wave of misjudgement of tics has deeply unsettled Lewis and caused his tics to sky rocket.
As the last school year drew to a close we were filled with re-assurances that there would be ample handover, ample training and lots of communication before the new school year began. We heard nothing and 2 weeks into the new school year things began to go very wrong for Lewis.
Lewis couldn’t cope with the sheer volume of change that had occurred and I had no way to communicate with the new teachers (I didn’t even know what they looked like or their names). As Lewis’s anxiety triggered tics increased he was coming home and telling me he was being told off for tics. I tried to explain that the new teachers had not met anyone quite like him and that everybody learns new things every day. I had no idea what his tics were like in school at this point.
The situations that have happened within the school day and the way in which (through no fault of their own) the teachers have tried to deal with Lewis has resulted in a downward spiral in Lewis’s conditions and added stress to new staff that need not have happened.
We as parents are now left with a lot of damage to repair, damage to Lewis, damage to our family unit, damage to our relationships with the school that has been great in the past 2 years. Damage to the new staff and damage to the other children and their parents. I feel my family is heading for a new wave of alienation and judgement within our own community. This will as always be met with our openness to educate and develop understanding of our sons conditions in a positive happy manor, even though on the inside it will feel very much like we are having our hearts ripped clean from our chests.
My main annoyance in this situation is that I offered a solution to the problematic throwing tics 3 weeks ago before anyone had been hurt as a result of tics and their response was “lets just see how we go for now”. After the decision was made by senior staff to remove Lewis from the school environment yesterday, Today has consisted of us shopping for pens, pencils, string, cable ties and glue. We then drilled a good few holes into pencils and pens and attached string and cable ties. These items can now get tied to a table leg and will not become objects flying through the air motioned from a tic movement. These objects can now be safely used by Lewis. This is a really simple solution that could have and should have been put into place in a pro-active manor rather than the re-active manor this weekend has consisted of.
Along with my re-active concerns, It bothers me that with the knowledge that Lewis has a throwing tic they have allowed him to handle things such as glue sticks (quite bulky and heavy) and scissors. I struggle to understand why a friend could not be tasked with carrying Lewis’s lunch box for him to avoid his tics throwing it and it hitting someone.
It bothers me that the staff failed to see that Lewis started ticcing badly after the final trigger that was a discussion about fox hunting and the fact that he was taught the hunters kill the foxes with the use of dogs and they die a bloody death. It bothers me that Lewis knew so much about how brutal fox hunting was and that they have failed to see that his tics are born from his fear other dreadful things that haunt him every day will come out of the teachers mouth.
We now desperately want to make this situation right and have in place the right mindset from everyone involved with my confused, vulnerable, lost little boy. underneath this exterior of conditions they should be able to see the most wonderful little boy with a caring kind heart and a mind that has the capability to do some world changing things. Lewis absorbs everything but releases only the tiniest necessary amount of how things are for him. He lives his life confused and trying to make sense of this crazy world and of people but is unable to communicate in the normal way.
When I feel in a place of desperation and deep need for resolution I find comfort in knowing that God has bought us this far and he will bring us through this next challenging time. I hope from this situation that has affected so many lives in the last 2 days and left so many this weekend thinking about nothing but Lewis we will see some good, some purpose, some way that things will be better as a result.