the difference a few years make…

Ten years ago, I was a single mum of one. My son was constantly by my side, unless he was at his beloved Montessori school.

His teachers had a tough gig… my firstborn son had behavioural issues. The problem was that I’d never noticed them. It wasn’t that I didn’t believe his educators but they did have to convince me.
My search for assistance for him took me all over our region. GPs, social workers, therapists, psychologists and childhood mental health services… we went through them all. None were able to say what it was that was “different” about my child.

Did they not believe me? Perhaps. Maybe they thought I was an overprotective and slightly (if you can be slightly :P) neurotic mother. I was referred to countless parenting programs, completed them and still struggled to communicate with him at times.

Some put it down to his cancer diagnosis and all he had to deal with… I knew better. He was gifted, advanced in speech and understanding grammar and mathematics. He just seemed to not be able to cope with the simplest of things at times. *sigh*

After numerous anxiety issues and more than a few “end of my tether” moments, he was finally diagnosed at age 13 with Aspergers Syndrome.

Even then, it wasn’t achieved through “normal” channels. Whilst admitting my son early one morning at the Childrens Hospital for surgery (100km from home), his lack of co operation or even, understanding of it, lead me to break down and cry in the hospital foyer. Fortunately for us, his consulting geneticist was passing on her way to a meeting and consoled me. Somehow I managed to regroup myself and find the strength to get us both up to the ward and ready for the rest of the day ahead. As she parted, she promised me she’d speak to a colleague and ask him to contact me prior to our discharge in two days time. She did.

When the specialist arrived and introduced himself, it suddenly dawned on me he was a child psychiatrist. It didn’t matter though by then… I was dubious he would have any solutions since none of the others had. Perhaps I needed the psych.

After his first meeting with us and a couple of subsequent follow up appointments, he informed me my boy had ASD complicated by ADHD. My world was rocked but my son was oblivious. It meant more appointments he wanted nothing to do with.

Follow ups and services are limited when the condition is picked up so late. No behavioural intervention or assistance at school for all those years meant he was resistant to it when offered. Therefore his support services have been limited to a mentor who managed to “click” with him and occasional respite time.

Yesterday, I sat in a room with two specialist paediatricians and discussed the development of my precious five year old son. After a physiotherapist picked up developmental delays when he was almost two, my second son had been through a similar trail… he was referred to the Paed Development Clinic at the local hospital for early intervention. He had hypertonia, hearing loss to a degree as well as a stutter and limited speech. Occupational therapists, speech therapists, physiotherapists and child psychologists ran specialised playgroups to support groups of children before they started school.

This meant that when I questioned my then, four year old son’s ability to cope with social environments, I had a starting point.

Since his journey started, I’ve removed him from the care of one paed and requested (and succeeded) in gaining a referral to another I respected. It took an eight month wait to see her and we haven’t always seen eye to eye… but I trusted her. I needed to convince this doctor that this child also had other underlying problems. In the meantime, I went back to the development clinic staff.

I also confronted our GP one day, asking if I was indeed, looking for a non existent complication. He informed me that time was our best ally… and that he’d have handed me a referral to a psych if he thought that. That gave me hope… plus a little despair.

Speech therapy assessments from at least three separate individuals had failed to pinpoint anything that stood out.. he was average in everything. This somewhat startled me, my other three children are all highly intelligent so I was wary. He had never struck me as “average”… neither did his genetics.

So I went out on a limb and requested the current speech clinician try him on an ASD test.
It came back that he was again, average… but there was indeed a particular obstacle and it possibly had a name. The only thing was, that it was rarely found in isolation. More than likely it was an ASD related trait.

From there, his paed, still not completely convinced but willing to give me the benefit of the doubt, recommended a consultation with a behavioural paed.

That session took an hour. I sat in the room as my five year old interacted (or not) with the new doctor over a small child sized table. As she directed him with toys, puzzles, activities, problems, questions and games, his responses or lack of at times, were very distinct. We left after the appointment with my little man saying he was bored and tired of it.

My follow up session yesterday confirmed my suspicions. Based on his history (extensively documented by each doctor and specialist treating officer) as well as his reactions in the testing environment, his outcome is Aspergers Syndrome. Similar to his elder brother.

I was handed paperwork and a lengthy explanation from the doctor, as well as follow up support from our usual paediatrician who’d observed the testing process. His letters will be dispatched to his school and treating doctors as well as myself.

It’s not all bad though. There is funding now for early intervention therapy through a program facilitated by the government of up to $6000 per financial year per child. The only drawback is that you need to have your child registered by their sixth birthday to gain the full benefit. I have just over two months to get that sorted.

He is still the same little lad I brought into the world, loved, nurtured, breastfed and played with… and he always will be, just now we have a direction to head.

Who knows how much this will help my son on his life travels. The only thing I do know is that I need to do what’s best for him and right now, that’s getting him all the help I can, something tells me we’re going to need it.


~ by C J on June 3, 2011.

2 Responses to “the difference a few years make…”

  1. *big hugs* You do more battles as a mother than most. Much love to you and your boys on your journey…

  2. Woah! A diagnosis! Woah! You are right, there is direction now. But woah! Big hugs. xx

Comments are closed.

%d bloggers like this: