‘Our world came crashing down’

THE speech and language therapist sat in front of my wife and I, careful not to make eye contact. She sifted through papers on her lap, ticking little notes and boxes, silent for a few minutes as she chose her words.

‘Our world came crashing down’

Finally, she lifted her head and spoke, sending our world crashing down. Our two-year-old son, Joe, she said, was presenting symptoms of autism and we should have him diagnosed.

I left the room while she was beginning her second sentence.

I cried in the corridor and punched the wall. But I knew I could not leave my wife in there for too long by herself, to absorb this bombshell.

I went back in, we listened, and we drove home in tears.

Joe was waiting by the front door to greet us as our car pulled up. I was broken. My wife was broken. We’d been robbed of our son. My baby daughter, Emily, had been robbed of the big brother who was supposed to mind her. My family, I felt, was broken.

Looking back, I remember going through the seven stages of grief.

The shock, denial, bargaining, guilt, anger, depression and, finally, acceptance — admittedly, the latter two stages are constantly revisited.

It was an horrendous time for Sylvia and I, but we’ve come through it with the unconditional love and help of family and friends.

Sylvia and I cried non-stop for three days, literally waking up and going to sleep sobbing.

We got it out of our system. Time was of the essence. Get through the pain, start making the phonecalls, start the research, start rebuilding.

Fast forward to today, 17 months later, and we’re thankful for that most painful moment in our lives.

Joe was shortly afterwards diagnosed with autism.

Had he not, he may have ended up on a cycle of constant misdiagnosis.

Instead, Joe got the treatment and intervention he desperately needed and he has made great strides since.

As it happened, on the day autism entered my life, US President Barack Obama was in Ireland.

Obama spoke to lift the spirits of tens of thousands of the public on College Green, on May 23, 2011. Obama’s key words of ‘hope’ and ‘change’ were symbolic for me that very day — I had lost hope because I believed then the relationship I had with my son was forever changed by this beast named autism.

I was right, the relationship certainly did change. But I didn’t know then what I know now. We have grown better and stronger together because of his diagnosis.

This is because Joe began to receive home tuition and his parents went to countless numbers of courses to learn how to live in this brave new world.

Together, all our efforts are beginning to pay off as he learns how to express himself.

The signs of autism had begun to show from when Joe turned two: his obsession with putting things in order, his inability to express himself, poor eye contact, lack of imaginary play, and tantrums (from his own frustration at not being understood).

Without the treatment and intervention, we dread to think where he might be today.

Intervention is key, and that is why it is heartbreaking to watch cutbacks being made to services so crucial to special needs children.

Joe has had home tuition and gone on to Shine and now Sonas — educational facilities specialising in autism.

He constantly stuns me with how much he has come along, and I allow myself again to dream of positive things ahead.

Then, the cutbacks bring me tumbling back to earth. Funding cutbacks mean 25% of the special needs assistants (SNA) have been axed from his school. This means less help in educational and sensory needs.

Sonas is all about early intervention and takes in children from the age of three and sets them up for either mainstream school or ASD units and special schools.

This is what the cutbacks directly mean to me, but, of course, they are also affecting thousands of children and their parents across the country.

The Dáil was told earlier this year that nearly half of children with autism and serious special needs had lost their domiciliary care allowance — and now SNAs are being reduced, despite a higher number of children than ever being diagnosed with autism.

This means there is a lack of continuity of care and this will hinder the children in achieving their full potential.

Indeed, Taoiseach Enda Kenny said the following in 2009: “I believe the best service to the child is the service closest to the child ... and children must not be victims of bureaucracy. They deserve our devoted attention, not our divided attention.”

Having an autistic child is difficult enough, having the Department of Education intent on introducing further cuts is devastating.

In the meantime, parents do what they can — support groups, lobbying and fundraising.

We depend on our families and friends to support both the families and the wonderful facilities that educate children with autism.

Recently, my brother-in-law, Rory Galvin, completed phase one of a three-part fundraising initiative for Shine Ireland.

Not bad, considering that just two years ago, by his own admission, he couldn’t really swim, didn’t own a bike and usually only ran when the chip shop was about to close.

Rory successfully completed the recent ‘ironman’ competition in Galway and will run the 2012 Dublin marathon on Oct 29, before completing the trilogy at Ironman Lanzarote on May 18 next.

* More information and donation links can be found at shineireland.com/ThreeChallanges.html

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