The first rule of Fight Club is you don’t talk about Fight Club, but you know what, I need to talk about the fight.
Every day is a fight, every day you wake up thinking who or what next. What am I going to have to deal with today, what is going to get in the way, and the thing I hate is this is just not me. I’m not a negative person.
I’ve been made this way by circumstance, by barriers and red tape. I’ve been made this way by people who don’t take disability seriously, by people who can’t see the struggles and the hard work. Who dismiss a disability just because they can’t see it.
Recently I wrote about battling the system and it’s gotten worse in these past few weeks. Even though Archie is non verbal he’d ‘utilised his allocation of speech therapy’ and had been discharged to be reviewed once he starts school. Seriously? A 3 year old little boy who can’t talk or communicate will be reviewed once he starts school. How will he even be able to manage at school without being able to communicate?
So another round of fight club began, there was no way I was going to let this happen. After two days of phone calls, lot’s of tears and shouting (from me) we finally were offered a review. During the review the speech therapist realised his abilities had been over estimated, apparently he was marked at Stage 3 of his PECS (a specialist picture exchange communication system). Stage 3 is using multiple words & beginning to make sentences. He is no where near this stage which the therapist realised pretty quickly. She then undertook an assessment which clearly placed his level of understanding and communication much lower than was documented. Thankfully he’s now back on another waiting list but only because I put up a fight. Plus the wait is going to be even longer as he needs specialist therapy for his PECS rather than general speech therapy which hasn’t worked.
Myself & Archie’s SENCO at pre school have been preparing the paperwork and reports for his official assessment for an Autism diagnosis. Pages and pages of reports, so many questions we had to answer. Even though all the specialists who deal with his care, currently about thirteen people, all agree he has Autism but it’s another fight to get him on the waiting list for assessment.
In our area, a child cannot be referred for assessment until they are three. Once they turn three you then have to fight again and jump through hoops and red tape to make the waiting list.
Various agencies have to be involved but aren’t forth coming, they don’t turn up to meetings when they have agreed to be there. They don’t fill in the right paperwork or submit the right forms.
The specialist autism & communication agency we are currently waiting for were involved about six months ago. They came to Archie’s nursery to do an assessment and gave us recommendations. Then she went on long term stick leave and hadn’t documented the visit.
We weren’t made aware of this until we’d submitted all the paperwork and reports and were told we wouldn’t be eligible to be added to the waiting list this quarter. We would have to try again at the next panel meeting in the next quarter. Another fight.
After numerous phone calls from myself and Archie’s SENCO, the agency we are waiting for have agreed to discuss him at their next panel meeting in May, which means we will have missed the deadline for submitting the relevant paperwork so it will be another three months. Another fight.
It is absolutely crazy that so many barriers are in the way, that so many different government and local authority agencies have to be involved, that they can’t communicate with us or even each other.
But you know what, I’m ready for the fight. I’ll keep fighting, every step of the way, I’ll just keep fighting because my boy deserves the right support. My boy deserves the world, and I’ll give it to him. So I will talk about fight club as there’s so many other parents out there in the same club.