My son was totally let down by the system

In week three of our series, LENORE GOOD talks about finally receiving a private diagnosis of autism for her son, and her ongoing battle for services
My son was totally let down by the system
Bodhi Good.

I learned more in one hour with Kieran from SHINE than in the previous year of wondering what was going on and where to turn.

It was 12 days before Christmas, 2016, when we pulled the money together and paid €500 to get Bodhi privately assessed. We drove to Dungarvan after zero sleep the night before and I will never forget it, as he only slept for 45 minutes in the car — that was the extent of his sleep.

He fired a toy in the office which missed the psychologist’s head by millimeters. She was able to confirm autism and sensory processing disorder within an hour of interacting with Bodhi. We drove back devastated but at the same time relieved that we knew what we had to do.

I found myself reading up on different therapies, reading posts from other parents who discussed what worked for them and their child, all the while trying to decipher what would work for us. I quickly realised that Facebook groups can be a curse and a blessing, a treasure of information yet the negativity and sometimes cliquey mentality can drain the life out of you.

First and foremost, the most important thing to remember was other people’s stories were not ours.

There is this huge misconception that autism is a general straightforward diagnosis but just because one child has autism does not mean the next you meet will present the exact same. It is a HUGE spectrum and so many different things come into play. Not all children will be non-verbal issues, you can have a child who will talk incessantly; not all children will display meltdowns in public, some, especially girls, will be great at masking their traits and holding it all in until they come home.

Ask each parent and they will have their own unique tale to tell.

In our case, Bodhi had severe speech and language delay, the social communication was delayed and we were relieved at least he had no intellectual disability. At the age of two he was non-verbal, he presented with pica, which is the chewing of items, but in his case it was just bottle tops. This can be brought on by severe or sudden anxiety which then leads to the nail-biting, etc. I was relieved at last to understand this part at least.

Bodhi needed help and those who were meant to help him failed miserably. So I fought like never before for my son, I still do. If your child has no voice then you have to be their voice.

I asked questions, I shouted, I begged, I pleaded, I cried, I contacted politicians, the HSE... I made a complaint as his assessment of needs (forms we sent off previously) was not carried out within the three months it is meant to be by law.

I was told Bodhi was number 600- and-odd on the waiting list for his complaint to be seen, there was one person dealing with the workload and she was on number 480 at the time and it would be another six months at least by the time she got to us. This was just to deal with the complaint, mind you, not to be assessed.

I joked that there was probably a headshot of me on some dartboard within the confines of the HSE and an alarm that went off any time my number rang. They may have been sick of hearing from me but I wasn’t giving in or up.

I was learning things by the day, it was like this whole secret world had opened up and things I had been completely oblivious to before were so blatantly obvious to me now. I call it similar to Harry Potter, autism being a wizard, the Ministry of Magic being the secret places where like-minded people met up and the Dementors being the HSE and the people idly walking by nonplussed, Muggles.

I now knew that early intervention is put in place to do just that, intervene early in the most crucial stages of a child’s developmental period, the time where the child needs the help and therapies the most, the work to be put in place with the child before they reach primary school going age.

Yet the HSE were dealing with so many assessments they couldn’t cope, it was taking the bones of two years to assess one child, by which time the early intervention stage had passed and the parents were completely lost as to what to do.

There is no manual handed out with your child when you leave the hospital, we aren’t qualified, we don’t know the first thing about what to do, we were waiting for people who do to come and help educate and inform us. The child is lost in the system, no therapies or work have been done at this crucial time and by the time they reach the age of four they are telling us that they are removed from their list, no longer their problem and on the Department of Education’s list now... where, you guessed it, we start from scratch, all over, on a wait list again. It’s like a cattle mart, you are prodded, poked, shoved and being pushed around.

The catch-22 being that if you wanted to place your child in a school, the school was only accepting a report from the HSE to say that they diagnosed your child with autism, no private diagnoses were being accepted.

So what do you do? You accept you will have a fight ahead, after spending €500 for help only to be told it’s not the right type of help. You call in the big guns.

A human rights and civil law solicitor in Dublin, Gareth Noble, stepped in on Bodhi’s behalf and on behalf of a lot of children nationwide. It is because of him bringing the HSE to court to challenge them on the delays that we eventually got Bodhi’s HSE diagnosis done.

In that time, we lost a place in a local school, it is like you jump one hurdle and they place another 12 in front of you. The powers that be at the time, wanted to send my three-year-old child to school in a taxi, an hour each way every day, with a stranger to mind him. The same child who, if I got out of the car and walked around to the passenger side would be hysterical, would vomit if I was gone for too long, who didn’t eat for up to three days and didn’t sleep.

This was not their problem, they have a list of names and a list of places: accept the place or keep your child at home with you was the alternative. I read that a parent in Cork was offered a place for their small child in Waterford, it was then I realised the system was beyond broken.

Did they realise that if I insisted in putting him in a car, he would then refuse to get into any car at all, as he would assume the worst and relate any travels going forward in a car as a negative experience?

So I refused the place and had to fight for a place locally, where I could take him myself, a fight which we eventually won.

Follow Lenore on Facebook — Out in the Sticks with Six

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