FIGHT CLUB | BATTLING FOR MY SPECIAL BOY

Fighting for my special little boy @gymbunnymum gymbunymummy.com

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.

fighting-for-an-autism-diagnosis-1

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.




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9 Comments

  1. March 25, 2016 / 1:44 pm

    I know it’s so much harder to do than say but stay strong – you’re fighting for your little boy to the best of your ability and it isn’t easy, but it’s paying off. I hope he gets some more useful help, keep doing what you’re doing.

    Sammy xo.

    http://www.littlefickle.com

  2. April 4, 2016 / 8:51 am

    My sister in law had to fight in much the same way for my nephew, who has autism. It was hard but worth itx #sundaystars

  3. April 5, 2016 / 2:29 pm

    unfortunately those of us with disabled children are all too aware of the battles we have to get our children the help they need. As if coping with their disabilities is not enough.

  4. April 5, 2016 / 3:31 pm

    Well done you for fighting the fight. It’s sad that it has to be ‘who who shouts loudest’ – not just sad, downright unfair and sickening. Hope you are remembering to look after yourself too, which I know is easier said than done… but you need time to recover from the battle and prepare yourself for the next one x
    Stephs Two Girls recently posted…AAA Day Five (April Autism Awareness)My Profile

    • April 5, 2016 / 6:18 pm

      It really is Steph, and I’ve not come across one Special Needs Mama that hasn’t had to battle for their kids. I know I need time for myself and rarely ever have any time at all for me but I’m having a weekend away with my mum & sister soon and so looking forward to it x
      gymbunnymum recently posted…IS THE JOOLZ DAY QUADRO BUGGY WORTH THE MONEY?My Profile

  5. April 8, 2016 / 11:37 pm

    You are so inspiring to continue this fight and to talk about it. As a mother, you just will not give up on your children. No matter how many battles you need to face. It is just terrible that this society or Government make it so hard (almost impossible) for a little boy to get the help he so clearly needs. It is outrageous. Fight the good fight lovely. And hopefully Archie will get everything he needs and deserves. Hugs Lucy xxxx
    Mrs H recently posted…24 weeks pregnant – a huge milestoneMy Profile

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