I’m so used to “moving on” that sometimes I forget the state of STRESS Harry and I live in. The last few weeks with Freddie have been so bloody stressful, it’s like being in an abusive relationship, where you find yourself walking on eggshells, anticipating the next outburst.
School has been a little crazy lately, lots of different things going on; student teachers, book week, movie night, class trip… what can seem, for some kids, a fun break from routine is an absolute nightmare for Freddie, and by extension, for us.
What happens when Freddie can’t predict what will happen next, and next and next, is the creation of a state of constant anxiety, that descends on him like sand in an hour glass; once it starts running there’s no stopping it, unless the situation is reversed.
Instead of enjoying the extra freedom that comes with these types of days Freddie becomes fixated on trying to regain a sense of control over what will happen. But it’s really not possible. So the next best thing he can do is put on a mask and just try and get through the day. Until mum comes.
And when Mum comes, the mask slips away. Alternatively, Freddie tears it off.
I know from the moment I see him through the classroom door. I can read his body language, his face, with it’s mask starting to slip, contorted in the effort to control himself, keep himself in check.
On these days I wish he were my only child. I wish I could give him my full and undivided attention. I wish I could gather his things and help him get quickly to the car. It’s what he needs. He needs the overload that has been his day to be removed, rapidly, and replaced by a quiet sanctuary where he can recover and find himself, amongst all that anxiety. He needs to be alone within four walls, curtains closed and the door shut. He needs peace and quiet and solitude. He needs access to food and water, books, his violin, his chess set, and famous five on YouTube. He needs to be left alone, and only then can he find his way back.
My heart breaks every time I can’t give him what he needs. I know I provide him with a substandard version of what he craves, because he’s not my only child.
So, here we are, it’s a glorious day and I’m sitting in the car writing this while Harry plays with the kids in the sunshine. I need this time to acknowledge that life hasn’t been so easy lately and to let go of it all, just for a few minutes.
This weekend had been so beautiful, but oh so difficult. The outbursts have been frequent, thankfully interspersed with moments of joy, but by the time I’ve let go of the stress of the last outburst and start relaxing in the joy – the next attack comes.
It’s hard to hear your child raging at you. It’s hard to fend off physical blows, and words of abuse, without eventually using force of your own. It’s hard to move on.
Most people don’t see this side of Freddie, nor would I want them to. But that also comes with it’s difficulties; we’re met with ridicule when we allude to Freddie having Aspergers. The first question is often “have you had him diagnosed?” and before we finish answering that, right around the word “no…” all interest is lost.
A year ago I begged our GP to refer Freddie and Izzy for diagnosis, Freddie because we believe and have always believed, he has Aspergers, and Izzy because her behaviour was so out of control and we were a family who was about to fall apart.
The dr was annoyed, after all I had inadvertently only made an app for one child. Perhaps he was having a bad day, maybe it’s that burn-out I hear gp’s are experiencing, but whatever the explanation it was really inappropriate. He eventually conceded to referring Izzy, saying he had no record of problems with Freddie. He stood and held the door open, I left in tears. I don’t know how we made it home that day because it was a real low point in my life – finally admitting we need help and having it withheld.
So far nothing’s come from that referral, not even a letter to say we’re on the waiting list. But, life lead us to a private practice for Izzy, and with her transition, the problems I needed help with, in her case, have solved themselves. Not everyone receives as good grace as we’ve received, how would they get help?
I am really angry with our GP, we’ve actually only seen him twice more since then and both appointments have been really lacking in respect.
When I described Freddie to Izzy’s psychiatrist he had no doubt in his mind Freddie was on the spectrum (we have hundreds of examples going back to babydom). Understanding our financial situation Izzy’s Dr instructed me to get Freddie referred through the public system. Unwilling to approach our GP again I researched alternative paths, a child’s school can refer (ridiculous that the people that know him best are not thought to be perceptive enough to make the referral themselves), fabulous I thought.
Well it wasn’t as easy as that. I sent an email to Freddie’s teacher, who is in my opinion, the best teacher in the world, asking what do I need to do? She replied, directing me to the Principal. I emailed the Principal, feeling positive. The Principal replied saying “yes we could meet, but that she was very surprised as she has taught many children with Autism and would never have picked Freddie out as being on the spectrum”. So what you say, that’s no biggie right? Just an opinion. But with Izzy just starting her social transition I felt like I couldn’t handle one. Single. Thing. More. And so that’s where it’s ended.
But, like the title of this post, I have to suck it up and move on. It needs to be done. No amount of wishing or pretending, things are different will help. Freddie ain’t losing the traits of ASD, he’s getting better at managing them yes, but at a cost to our family.
I keep reading ” you will have to be your child’s advocate because nobody else will be” and I want to ignore it, I don’t want to stand out from the crowd, but I have no choice.
After the weekend we’ve had Harry agreed, we need to get this done. I feel a lot better knowing he will be there, adding his voice.