‘Don’t mourn the child you thought you would have... embrace the one in front of you’

In the first of a new series, mum of six, Lenore Good, whose son Bodhi has autism, talks about ‘The realities and joys of autism. In week one, she recalls the early days and the family’s struggle to get a diagnosis
‘Don’t mourn the child you thought you would have... embrace the one in front of you’
Bodhi Good.

THE reality of it is, I was ignorant, completely pig ignorant to what autism was or even entailed for a child or a family.

I will put my hand up and admit to being one of those people who saw a child maybe scream or lash out in public and felt sorry for the parent who looked severely under pressure but secretly thought, I could never cope with that.

I can honestly say I was never ignorant enough to tut or pass a condescending unhelpful comment like “a good kick up the arse is what he needs”. No, I was not that person at least, but I was the person who was scaremongered into the horror stories you hear about your cousin’s aunt’s nephew and naively believing it.

I have six beautiful, smart and charasmatic children, if I do say so myself, each unique and yet so alike in ways. Five daughters ranging in ages from 16 years to 13 weeks old and one son, my only son, Bodhi, who is four and was diagnosed with autism in December, 2016.

Bodhi’s pregnancy was no different to the others, there was no lightning bolt hitting me some night, no curse a witch placed on me, no revelation as to what I did to cause this. As a parent that is what you automatically assume, as you are consumed with guilt and worry.

The first few hours of his life were very upsetting as he was whisked away from me in the ward at 24 hours old with suspected sepsis. He was taken to the neo natal ward and I cried and cried with worry in my bed. He looked so vulnerable strapped up to those machines, from then I knew deep down I would probably be a little more protective of him.

No sooner were we back on the ward again, when we were faced with him failing his hearing test. A repeat test a few weeks later also confirmed it, Bodhi had hearing loss in his left ear.

I think we always assumed going forward that any delays were to do with the hearing loss, after all, how can you speak if you cannot hear the words you are meant to repeat?

He would have good days and bad days, he reached all his developmental milestones, he walked and crawled, was very happy and affectionate. He did have some words but around the 12 month mark, I did mention to the doctor that I noticed he was twirling his hands and feet when he was sitting in the high chair, which I found unusual. She didn’t seem concerned and we left it at that.

It was again at 18 months I noticed that when he got very frustrated he would intentionally hit his head while screaming, again I brought it up with the doctor who insisted it was normal.

As he was my first and only son I thought it may just be typical boy behaviour as I had nothing to compare it to and always heard “boys are completely different to girls”. But actually, at this stage, I trusted my intuition and self referred him for speech language therapy with the Health Service Executive.

We were still back and forth with numerous consultants and the HSE, who all had conflicting opinions regarding his loss of hearing and what to do.

Some wanted hearing aids, another wanted to trial a bone conduction head band — a head band on a boisterous two year old boy who wouldn’t keep socks on. Some wanted further testing and someone else suggested a brain stem cell test to test his hearing under general anaesthetic. This was a prospect that seemed the best chance to give us the answers we needed, as any test up to this point were hit and miss — he was two. Getting a child of two to sit still in any situation is just not feasible, I was very worried about the procedure, considering his age, as he would need to be put under. My fears weren’t unfounded, it seemed.

They decided on the day to insert grommets prior to the test, they told us after that his ear canals were so tiny that it took them an hour to insert the grommets alone. They felt that the results were satisfactory and it should help Bodhi in the interim.

Now the hearing issue wasn’t only to blame, what else was going on?

The Speech and Language therapist was as confused as us, Bodhi displayed some signs of autism but not your ‘typical traits’. He had great eye contact, he was very loving but he had zero interest in toys or play, no interest in initiating or participating in playing with any children, and anything you tried to get him to interact with he would literally fire across the room. He communicated with us by pointing at items or dragging our hands down or up or he would put our hand on what he wanted.

The therapist was also thrown by the fact there was an issue with hearing on one side. He spent one session obsessed with the blinds in the room.

I was living on my nerves, I went everywhere armed with a charged phone and wifi, packets of chickatees and his bottle, the only things that seemed to calm him down and keep him occupied for a little while. The therapist and I agreed we would send the forms off for an assessment, even if it was to rule it out at least we would know, as she couldn’t call it.

At this stage we were dealing with a lot of screaming, self harming and regressing with the words and then being non- verbal. He would become very frustrated if people were having a conversation, the radio or the television was on and he couldn’t process what he was meant to be focusing on.

He also failed to acknowledge anything you were saying to him clearly if you were speaking to him on his left hand side. This meant a lot of whispered conversations so he could process what he was doing at the time, being sensitive to his needs which seemed to ironically trigger the anxiety further.

I had lost two babies in 2015 and subsequently stopped working as I was self employed. Who else could we trust to understand our child’s needs better than me? It was decided I would stay home full time.

I had a niece who was born four days earlier than Bodhi and the blatant differences were huge. It was like a slap in the face any time they were together, I felt sick knowing that something was wrong but I didn’t know what.

When someone said autism to me, I ignorantly assumed it meant rocking in a corner back and forth, lashing out or being a genius calculating huge numbers in their head and all the stereotypical bull***t we are led to believe in movies.

I realised I needed to stop the need for comparison and realise my child will march to the beat of his own drum. It was a refreshing wake-up call, figuring out that there were so many more ways to communicate other than speaking and it was my job to try and see what worked best for us.

Therapies can be great but they can’t speed up what isn’t there or ready. The reality of it is we needed something that worked for us every day, not just for an hour with a person once a week.

Lenore writes a blog on Facebook, called “Out in the Sticks With Six”

See next week for more.

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