My child and autism: 'I felt sick knowing that something was wrong but I didn’t know what'

A diagnosis of autism can be difficult to come to terms with. Amanda Cassidy speaks to Lenore Good about her son's autism journey and how, after a challenging few years, she chooses to focus on the positive. 

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 feel sorry for the parent who looked severely under pressure, but secretly think, I could never cope with that.  I have six beautiful, smart and charismatic children - each unique and yet so alike in many ways. Five daughters ranging in ages from 16 years to 9 weeks old and one son, my only son, Bodhi who is four and was diagnosed with autism two years ago.

A mother's instinct

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 neonatal ward and I cried with worry in my bed.

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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.

After tests, we were told that 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 twelve 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 at all and we left it at that. It was again at eighteen 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. I trusted my intuition and self-referred him for speech-language therapy with the HSE.

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.  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.

His own little person

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 that it meant rocking in a corner, back and forth, lashing out or being a genius calculating huge numbers in their head and all the rest of the misinformed cr*p we gullibly are led to believe in the 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.

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We then faced the toughest six months of our lives.  Bodhi did not sleep from June of that year until the end of December. This was mainly due to the fact that he'd been frightened after an anaesthetic in hospital during an operation. The policy didn't allow a parent to be in theatre and put the mask over their own child’s face to put them to sleep. Instead, he thrashed out hysterical not understanding what Mom or Dad was doing. That process alone would be very hard on a verbal child to comprehend not to mind a child who depends on you completely to communicate his fears and issues. We felt we had let him down massively. In recovery, it took me fifteen minutes to get him to un-grip the bed rail and open his eyes to realise I was there with him as he couldn’t hear my voice over the sound of his own screams.

Pure exhaustion

After that, he would only doze for twenty minutes at a time and then wake screaming, he would not let himself fall into a deep sleep, this continued each and every night until about 7am the next morning when he would pass out with exhaustion, at which time it was due to wake the older girls to get up for school. I was then juggling a newborn, the needs of my three older girls, a husband who was working nights, and a two-year-old who screamed every half an hour and would take an hour or so to get back into the bed. We tried everything, salt lamps, creams, over the counter meds, white noise, DVD on, DVD off, lights on, lights off, sensory lights, baths, massage and even CBD oil. We contacted doctors, consultants and Bodhi’s paediatrician, waiting for an appointment can seem like years when you are living day to day on zero sleep. We were prescribed melatonin and that didn’t work either.

Eventually I hit my wall, we were exhausted and at our wits end. He relied on me explicitly and I was drowning, I was going to the toilet with him on my lap, cooking with him laying at my feet, cut off from friends, any social life, I wouldn’t even go to the shop, I was angry, upset and I couldn’t see the wood for the trees.

He had such bad anxiety, he would bite the inside of his lip until it bled, and bite his nails. It was a very sad period of time trying to come to terms with wondering if this is the way it would always be.

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We reached out to SHINE advocacy service for help in November 2016, as the HSE told us we had a minimum wait of 18 months before he would even be called to be seen. I learned more in that hour with Kieran from SHINE than in the previous year of wondering what was going on and where to turn. It was twelve days before Christmas 2016 when we pulled the money together and paid 500 euro to get Bodhi privately assessed.

Within an hour, she was able to confirm autism and sensory processing disorder. We drove home devastated, but at the same time relieved that we knew what we had to do.

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 on 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. I was relieved at last to understand this part at least.

Let down

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, 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 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 is 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 know 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, at which time the early intervention stage had passed and the parents were completely lost as to what to do.

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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 then 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 waitlist again. It’s like a cattle mart, you are prodded, poked, shoved and being pushed around. The catch 22 is 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.

Beyond broken

So what do you do? You accept you will have a fight ahead. Due to various incompetences, we lost a place in a local school. The powers that be at the time, wanted to send my three-year-old child to a 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 and who would vomit if I was gone for too long. I read about another parent in Cork who was offered a place for their small child in Waterford, it was then I realised the system was beyond broken.

A positive turn

We found a tutor in the short-term and things took a positive turn. My heart felt so full, listening to her sing with him and try and encourage him to join in, he would belly laugh constantly with her, then one day, he said his name and her name. We were overjoyed, things started happening from here. My husband and I were so thrilled the day he took a ball and initiated play with his sister by throwing it to her and taking turns.

The smallest of things were everything to us. The reality is, with autism you have to leave your ego at the door, put your own dreams and desires to the side.

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What my son taught me was that through patience, understanding and praise he would try again and he did. Bodhi’s year in SHINE last year was the making of our son, which brings me to the joys of autism. The jump in positive behaviour and progress from the age of three to four has been phenomenal. There is no longer as much anxiety, he sleeps through the night, there is no need for medication, he will eat, there is not as much screaming, no aversion to men, he goes for a haircut with his Dad and they go swimming, he will come to the shop with me, he now goes to family birthday parties, stays for a bit and actually enjoys them.

You build some incredible relationships with people on your journey, they are a huge part of your child’s development and are people you or your child will never forget, like the tutor who cried with me in July when she and Bodhi had to part ways. When the word autism enters your world, you are scared, you worry about the future, how will he get on, will he need someone to look after him or help him when we are no longer there, who would that be, do you put that responsibility on his siblings, what do you do? You have to stop though, as much as it is the practical thing to be thinking about, you need to focus on the day to day, which is more important as this is what is going to get your child through and reach their full potential.

Embracing the good

Autism enters the whole family not just the child’s life. The stresses can be daunting, it is very important to note that strategies and supports be put in place for your child’s siblings also as they need an outlet to vent with people who are trained in this area. With five sisters I know that Bodhi will always be looked after. One daughter even mentioned to me recently that if the man she marries won’t have Bodhi as his best man, then he is not the guy for her. My daughters have become so much more open to children with special needs, being accepting of all children and raising awareness in their classrooms and with their peers. They celebrate in every little thing he does as much as we do, they are his biggest supporters and that is a beautiful thing.

He has a huge range of words now and to think this time two years ago we wondered if he would ever speak. He spent the summer on the beach, did a surf camp for children with autism and became a big brother again in June. He will be starting his new journey in SONAS a Junior school for children with Autism, in September and I am excited to see what this next step will bring.

I like to share the positives and share our humour in the hopes that another family or parent out there who is just starting out on this journey knows that it can change, it does get better and with the right supports and therapies, nothing is impossible.  The hardest part is accepting the diagnosis and getting yourself out there in terms of asking questions, looking for the support and being proactive. You quickly learn that your autistic child’s milestones are also yours. You learn so much about yourself through your child.

Is autism difficult? Absolutely, but don’t mourn the child you thought you would have, instead, you embrace the child right in front of you.

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You can follow Lenore's blog, Out in the sticks with six, here. 

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