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Making Threats

By Homeschool Mum - Posted on 21 October 2010

If there is one thing that I have learnt about threats it is that you should never bluff. With self-confident children like mine it is crazy-important that you only say what you are prepared to carry through. My children have learned the hard way, at a very young age, that Mum means business.

Well, today I needed to made a threat (or perhaps a promise) to an adult that I needed to be sure I was prepared to carry through. This was the most thought out decision that I had ever had to make because the threat was to abandon my own child.

Before you gasp and jump down to the comments to abuse me you should probably get some context by reading through the 'feel no pain' category history because you need to understand that this is a culmination of having to put our lives on hold until we have to opportunity for PJ Bear to see a Paediatric Neurologist.

It has played havoc with Sir Sonic's home schooling as PJ Bear demands so much time and can be extremely disruptive if you are not constantly mindful of his sensory needs and his current 'sensory desire level' for a lack of better terminology to describe it.

Well, yesterday, we were meant to be seeing the neurologist that we had been referred to for the very first time. It was a week that ramped up with excitement right up until the day before. Immediately after checking our mail my husband called me to let me know there was a letter from Women's and Children's Hospital addressed to me which he opened and read to me over the phone. We had been bumped again. Not for a month like last time but for another five. This brings our waiting time to 11.5 months from the referral date, just a week longer than the wait list in the public system.

I, of course, spoke to the medical secretary of that area of the hospital and she promised to get back to me with some options and then left me to kick myself for not also putting the referral through to the public neurology clinic when I first received it too. That afternoon I mulled over what options may exist and felt totally option-less for what else I could do. After the last time I was bumped and another trip to emergency I got a referral to the only other paediatric neurologist in the state and our appointment with him was for a week later than our new 'bumped' date.

The following morning, at the time when our appointment was originally supposed to be, the secretary rang. There were no appointments available at all before the end of the year at all with their paediatric specialists. She, however, made some calls within neurology and the only neurologist with an appointment before Christmas was a 'specialist specialist' which meant that our letter of referral was not good enough because it came from our GP and not another specialist. She said that we would need to see a specialist who could make a referral. Her first suggestion was a paediatrician but when said that we did not have one for him and we were still waiting to hear back from the Paediatric Pain Clinic too. Her only other suggestion was an emergency doctor otherwise we would just have to wait.

Now there is something I need to contextualise here too. I home school my eldest child by choice. However, at this stage, home schooling PJ Bear is not a choice but rather a forced hand because in South Australian the Education Department's responsibility to cater for special needs only legally goes as far as 'diagnosed' medical conditions. So, until PJ Bear gets to a neurologist, goes through thousands of dollars worth of patented genetic tests that can take up to 12 months to get the results for and, maybe, actually comes out with a diagnosis the Education Department has no obligation to meet his needs. We tried to push them as a 'moral' or 'ethical' obligation in Term Two this year and were royally shut down, leading to more damage to our home through his late afternoon meltdowns from under-stimulation during the course of the day.

The toll of his needs has been wearing me down for a long time now. Because whatever he has is so uncommon it is unlikely that there is even an Australian support group, let alone a lobby group that will obtain funding for education support for him and respite for me as a parent when and if a diagnosis comes.

I was upset, almost beyond reason, thinking about the average three times a fortnight where an 'incident' occurs leaving me humming and harring about whether I need to take him to emergency or whether I just let it run its course. Let alone, condsidering some of the possible long term consequences from his active antics like jumping down our staircases, now from the top step but from higher up on the hand rail adding the strain of a twisting motion to his act too.

I needed that referral. I needed someone to give me a glimmer of hope. A glimmer that showed that there may just be light sometime in the journey would be bring me the strength to keep going in spite of all the challenges I faced each week. So, I decided that I needed an emergency doctor to get me that referral now.

So, I turned up to an Emergency Department and made the threat. Either I see a doctor who can get me that referral or I leave PJ Bear there for them to take care of. It was the quickest I have seen a Peadiatric Emergency Doctor in my life. I explained that I could not wait another five months to see someone knowing that it would most likely be at least a year beyond that again before we may know what is going on in his body and even longer before we found a treatment program that would minimise his symptoms. She checked him over made some calls and got referrals off to both their general Paediatric Clinic, with a hope of getting the ball rolling with them sooner, as well as to the super-sized-specialist.

I had never made a threat that big before and it scared me doing so. I seriously considered what would happen if they called me on it. It was scary and deeply saddening. I cried on the way to emergency, I cried whilst I made the threat and I cried the entire time I waited to see the Doctor. How could our first-world system be so bad that a parent needs to force the hands of Doctors in order to get the medical needs of their children met?

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