My world turned blue... my son was autistic

BEING a first time mother, you panic about everything. You panic about that first car ride home from the hospital, their first cold, the contents of their nappy! Your baby is the single most important thing in your life, from the moment that they come kicking and screaming into this world.

I was no different. I was probably the most neurotic mother ever, the biggest panic merchant/over-reactor ever! Proven by the fact that when Conor was four months old, I enrolled him in our local primary school. You know, just in case there was a waiting list!

I will always remember that chilly old winter Monday morning, walking out of the school, pushing my buggy that contained my potential little genius all wrapped up. I felt so proud, and so excited for his future.

That school was on my daily walking route, and every day I would pass and have a little smile to myself. Then came the day that I walked past with tears in my eyes, knowing my little man wouldn’t be going to that school. I pretended the wind was making me cry and hurried along.

Conor was a gorgeous, blue eyed and blond- haired baby boy — absolutely doted upon given that he was our first. Our lives felt complete, we were finally a family. Everything was as we expected it to be until we noticed that Conor was very ‘sensitive’. He would find a room full of people very upsetting, social situations became impossible for him. We noticed that he liked to play alone (how independent, we thought!). And he became fixated on wheels. Now, most boys love trucks, etc, but Conor became obsessed with wheels and studied how they worked, how they moved over objects — not your typical two-year-old behaviour.

Then came the ‘tantrums’. At first we thought ‘terrible twos’. This was yet another phase that would pass. But then one day I stood back and really looked. This particular tantrum had lasted for one hour and 10 minutes. My child was inconsolable. He wasn’t making eye contact. He looked absolutely terrified and lost, rolling around on the floor. I knew we needed help.

Given that Conor’s speech was mildly delayed, we were first contacted by the HSE Speech & Language department. They felt that his speech would come along in time, and that these tantrums were nothing to worry about.

We were added to a waiting list that was about four months long. I was too worried to wait around and we went to a private S&L therapist.

During her assessment of Conor, she began asking questions I was not expecting. Not just related to his speech, but to how he played, his daily routine, how he communicated, if he had any repetitive habits, etc. The more she asked and the more I answered, it slowly began to dawn on me... is it autism?

As soon as she mentioned referring Conor for an assessment of need, I knew. It was all starting to make sense. My son had autism. I was numb. Lost. I felt cold inside. It was the day my world turned blue.

I use the colour blue for two reasons. Firstly, it is the colour most associated with autism awareness globally. But secondly, it best describes how the next few months felt. I felt blue and alone.

The waiting lists for the public system diagnosis were and still are diabolical. We were told that we could be waiting for up to two years for Conor to be diagnosed.

Early intervention is everything when it comes to autism and the public waiting lists completely counter work against this.

So once again we had to go to a psychologist down the private route to receive an official diagnosis.

Then came the mountains of paperwork that had to be filled out in order for Conor to receive home tuition.

With the help of an advocacy officer from Shine, we tackled it and secured our home tuition, which to this day is a lifeline to Conor.

Conor was privately diagnosed in June, 2015. It took 16 months, complaints lodged (and upheld) with HIQA, phone calls to the head of Cope, Bridgeway House, messages left unanswered, heated discussions, phone calls ignored — and Conor was finally diagnosed by the public system in October 2016, 16 months later.

FROM ONE WAITING LIST TO THE NEXT

After his diagnosis, Conor has now been placed on yet another public waiting list — this time for services.

The needs for each person with autism varies; for Conor, speech and language is one. Imagine not being able to tell someone that you have a headache, a tummy ache, if you are hungry or scared? Without the ability to communicate, Conor will become isolated in a world of his own.

Conor also has Sensory Processing Disorder and requires Occupational Therapy. For example, he is unable to sit still. He needs constant stimulation of his vestibular system e.g he likes to bounce, a lot! He needs to spin too and will chew on anything. All of this helps to regulate his sensory system and, without proper therapy, we are faced with a child who is out of sync with his own body.

He has sleep issues — it can take hours for him to go to sleep and he sometimes wakes at 3am. He can also become quite lethargic, loses his balance and can appear clumsy. These are just a few examples.

We try our best to send him to private therapists, but it becomes increasingly difficult due to cost. But we have no choice — current waiting lists for services such as psychology, speech and language, occupational therapy are up to two years.

WHY PSYCHOLOGY?

Because of his meltdowns. If something as simple as a trip to the shop doesn’t go the way Conor expects it to (perhaps a change in routine) Conor’s world can come apart, resulting in what appears to some as a tantrum. But it is a meltdown.

Conor can become aggressive, lose control and become upset to the point of empty reaching.

His aggression is usually directed at me and I can tell you first hand that there is nothing that breaks my heart more than watching one of the people I love the most, hurt me the most.

It has been the most difficult part of all of this.

These days, I don’t like to plan ahead too much as the future is so unclear now. Will Conor ever have friends? Will he ever drive a car? What about getting a job? We have to take one day at a time. Right now, our main focus is getting a place for Conor in an ASD (Autism Spectrum Disorder) Unit — which is a class, attached to a mainstream school for kids on the autism spectrum. But like all things, we have to wait, in fear, on a waiting list to see if he will be able to attend school.

Such a basic right for any child – an education. Except not in this country. Not when you have autism. We are unique.

In the meantime, life goes on. We cannot do the things that other families do like attend playgroups or go for walks in the park. Some days we feel very alone and isolated. But we have each other. We are unique.

And with another sibling on the way, I hope Conor’s support network will grow!

We cannot change who Conor is. Autism is a part of him, like being a neurotic is being part of me!

Instead of trying to change him, I will try to change the world around him — push for change, raise awareness. I want to teach the world how to accept my son, one person at a time.

But right now, it’s a Sunday evening. There is washing to be done, dinners to be prepared and a very bouncy little four-year-old who needs to go to bed. So perhaps I will get back to changing the world tomorrow, after a coffee or three...

Trish O’Neill is family & parenting blogger, Blarneymum. She is a proud Cork mum of two (soon to be three!). You can find her blog at: www.facebook.com/blarneymum

MARCH WITH US TO GET BETTER SERVICES FOR OUR CHILDREN

“WE are just normal mammies trying to make a change but we need your help...” Those are the words of the organisers of the March For Our Children, which takes place on Monday, April 3 all over the country. The marches, which take place in Cork, Tallaght, Naas, Sligo, Limerick and Clonmel, are aimed at raising awareness of the lack of support and services for people and families dealing with autism.

The Cork march will leave from Cork Opera House at 10am, travel down the quays to Penrose Wharf, into Bridgeway, out to Blackpool to the Disability Services Office, where Assessment of Needs go to and Early Intervention Teams are based. Organisers have asked Minister Simon Coveney to be at the end point to accept a copy of a petition, which they have been collecting signatures for, calling for improved services and supports.

Trina Murphy Organiser said: “This is a nationwide march to highlight the extremely poor services that are currently provided by the HSE to children with special needs.

“The March is for every person affected by extremely long waiting times for appointments and intervention and the general lack of services available to children and families.” 

For more see March For Our Children Cork on Facebook