Thursday, 1 August 2013

Fight the good fight.

Your child has autism.

Here's your rainbow pack, a leaflet on the main autism charity in your area. Here's some information on family fund. Oh and here's your boxing gloves, your body armour, your chainmail vest, your lance and your cavalry horse for when you do battle. Hope you've got room in your boot?

"Prepare for a fight" everyone said. 

Now you might not believe me but I'm not really a confrontational person! I can tell it like it is and I can give as good as I get but I won't go looking for a fight. However, in the space of a year I've found myself in two official complaints procedures and taken on at least four other 'crusades'! Not out of fun neither! Contrary to popular belief I don't like being wound up over things it's not good for my bipolar! Yet here I am, insides churning from yet another round of "tell it like it is" to another load of 'professionals'.... And guess what, it's upsetting...

It's soul destroying. You daren't ask for help because you know the chances of you getting it without having to raise your voice up an octave is slim to nothing. I'm upset that once again I have to argue the toss with self proclaimed experts who have met my child for all of 10 minutes on who exactly is the knowledgeable one here? I'm tired of wasting my energy that is in short supply and desperately needed for raising my children on jumped up jobs worths protecting a pot of money that's no good to anyone if they don't spend it on those that need it.

And my children need it. I never ask for a thing we're not entitled to. Its not about getting freebies or getting rid of the children for a bit or settling for something because it would be easier. If its in the best interest of my child and they are entitled to it, they're bloody well gonna have it or do it and I'll tear you another one if you tell me different.

Trust me when i tell you...I don't want to fight. Its exhausting, stressful, upsetting and it's all encompassing. I shouldn't know the complaints team by first names. I shouldn't need to email the head of service if I need support on something. But that's what it comes to. And after all the upset I go through I'm sure they mutter under their breath that I'm a damn trouble maker instead of asking what's wrong with the system that I have to keep complaining to get my families basic needs?

I lost my cool in a meeting yesterday because of the jobs worths. I don't like losing my cool, it affects me for days and I've still been distressed today because of this meeting. I'm overwhelmed with the lack of compromise some of these services can make. At the very least do me the courtesy of empathising. Remove your head from your criteria and realise that our lives are not "black and white". There are far more than 50 shades of grey! I have to say on this occasion I was close to apocalyptic at the sheer lack of understanding on these so called professionals part.

Professional "Everyone in this room agrees with me."Me "I don't, my husband doesn't.."Professional "Every professional then..."Me "How am I not a professional in my own children?"Professional "Well, you're not a health professional."

And for the record not every professional agreed with him either. But it's this arrogance that distresses me the most. The pig headedness. The refusal to see it from our point of view. The broken promises. The feigned interest. The contradictory information. The false hope that these people install in you and then wonder why you are so upset when they disrespect you, your family and your needs.

But then of course you're not allowed to get upset. You're not allowed to talk over those who are talking crap. You're not allowed to become emotional (yes I've even been accused of turning on the waterworks!!) They take your time, your sanity, your emotions and then get on with their daily lives like nothing has happened. To me its like a virus that lives under my skin for weeks after its all over.

What do they want from us? We are parents. Fighting. For our children's needs. Asking for help. Needing some answers. And most of the time we are simply being let down.

Just once I would love to contact a service, ask for their help and receive it.

Until that point...

Once more unto the breach, dear friends, once more;...But when the blast of war blows in our ears,Then imitate the action of the tiger;Stiffen the sinews, summon up the blood,Disguise fair nature with hard-favour'd rage;Then lend the eye a terrible aspect.....Now set the teeth and stretch the nostril wide,Hold hard the breath and bend up every spiritTo his full height....The game's afoot:


Julie said...

It wears you down, doesn't it.
My NT, educated to degree standard, vary caring nurse of a daughter ended u in A+E last Thursday night. She had an acute asthma attack and as the registrar said "an acute illness of some sort". But the "professionals" kept saying anxiety, or panic attack. After telling the triage nurse that my daughter had never HAD one of the panic attacks and it shouldn't have gone on for the best part of 6 hours anyway, I threw her my "get your big girl pants on and deal with it" look.
Then to add insult to injury, the consultant came to her bay, looked at her and went to a nurse and said "tell her to stop hyperventilating". Mmm - if i'd been there, I would have ripped limbs first, asked questions later.

Sara x said...

Only last week I had to explain to a professional that I knew what I was doing. That I was experienced in their field and many others. That after 14 years of raising a disabled child I was a professional in alot more areas that they were. Medical, physical and academic.

I was angry that I had to explain myself but confess to enjoying watching the smugness leave their faces.

It's hard not to let them get to you but don't doubt yourself you are the best advocate for your children.

Anonymous said...

Keep on fighting. if only we could all take other knowledgable autism parents into these meetings so that there were equal numbers of The Professionals and Us. In fact if only we could take more parents in and only have 1 or 2 professionals in these meetings! Out and out bullying of parents & the children sometimes and it's not on.

Deb said...

I'm so with you on this one. I'm fed up with professionals assuming they know more about my children than me. They don't and they are unlikely to either. They don't live with them and have no emotional attachment to them.

I just wish they'd value our parental contributions and treat us as equals; if they did perhaps we wouldn't have this awful professional versus parent divide.

Only the other day I came across an autism professional site which encourages professionals to work together and share practice but nowhere were there opportunities for non professionals to join in. Non professionals had to join other communities elsewhere. I was really disappointed at this; do professionals really think they have all the answers? What about the families who have spent years and years of their lives caring for their loved ones and what about people with autism themselves? It feels a very divided community at times.

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