Resistance

6 months has passed since we were referred to a rehabilitation team, the last week in October came and so did our first appointment.

A family psychologist who works with parents with kids with disabilities, and who interprets these children.

The first professional person to tell us; Jennifer is happy, you’re doing the right thing.

A fairly simple sentence, but the significance of that sentence has had an enormous impact on us.

We talked about things like guilt, we talked about feelings, Jennifer’s feelings and how she may express them we talked about family, friends and society in general.

We talked about the frustration of not being understood, we talked about shock and it’s consequences and we talked about Jennifer.

He said a lot about Jennifer, he agreed that her communication abilities are above average, he saw that she has problem solving skills, that she uses her hearing to recognise, differentiate and locate sounds.

The more we learn about brain damage, the more intriguing it gets. Jennifer is communicating and has done since she was 3-4 months old, but it doesn’t mean that she’ll be able to talk.

Jennifer may kick her leg in response to a question, or make subtle hand gestures……weird, but it’s a sign that she understands. We haven’t noticed anything like that, Jennifer makes noises when she wants something and has done since she was 3 months old, different noises for different needs, a typical trait of a blind baby.

There’s so much society does not understand about these kids, we never did before and still don’t, so much to learn and it seems so little time.

And probably most important, we talked about development charts and Jennifer’s future. He put things in perspective, the first time anyone has, and he confirmed whilst scoffing at the idea that Jennifer is at least, not at the bottom of the scale.

I guess we knew all these things, but to be reassured by a person who has done this for 25 years is mildly put, comforting.

But one thing we all agreed on, is that we will meet resistance for a long time yet.

Meeting resistance from almost every angle inevitably causes frustration, it makes all problems greater than they probably really are and it forces you into depression.

We answer questions every day, we fix problems daily,  we are extremely busy and we are constantly thinking of how or what we can do make our family’s life a little easier so we can spend more time on the fun things in life.

We know that everyone has our best interests at heart, but sometimes you just need to be listened to rather than dictated to, support doesn’t always need to be a physical act.

Depression is an ugly emotion that can very quickly spiral out of control without help. Some turn to alcohol, others even worse, we’ve chosen a psychologist who deals with children with special needs.

It feels like drowning, or trying to climb a huge wall, which seems to be growing bigger every day and then you get an idea, maybe we could dig under it?!!!

You start digging but for every shovel you dig out of the hole, 2 fall back in…

A natural reaction to grief, or overworked or something similar.

I said to Odrun one night, all I want to do is lock every door and shut every window and not let anyone in the house, I’m sick of explaining things, I’m sick of misunderstandings or trying to continually justify our choices for our kids. Or we have to follow-up something, write an application or we can’t get what we know we have the right to.

It’s relentless, never-ending…..

When can we just get away from all of this?

The reality is we can’t escape, even if we wanted to.

I feel like we know where we’re going with Jennifer and what we’re trying to achieve, we just need to sort ourselves out now.

Like our application for a carers wage for Odrun, so Jennifer can stay home 2 days a week from kindy and Odrun can reduce her working hours by 25% has been rejected.

The reason;

Jennifer doesn’t require more care than a “normal” baby at this age……!!

Our letter of complaint towards that decision;

Jennifer is 11 months old and has severe brain damage as a result of a huge haemorrhage and internal pressure within the ventricular system has caused hydrocephalus.

As a result she is blind, she has the motor skills of a three-month old, social development skills of a 5 month old, cognitive ability of a 6 month old.

She has, although not tested, epilepsy. She also has a severe dairy food allergy and is showing signs of cerebral palsy.

A child such as Jennifer, and please feel free to confer with professionals, needs optimised environments to achieve basic everyday developmental milestones.

At this present moment, it is our belief and the belief of those working with Jennifer that a combination of kindy and time at home will allow Jennifer to integrate into society at a pace suited for her.

Jennifer has a daily routine consisting of specified activities designed to stimulate, encourage and develop curiosity. She also has various specially made equipment to assist her with this we have stretching and other exercises we must do with her. This is not an hourly or half hourly routine, this is an all day routine.

She has shown that she has problem solving abilities, she has above average communication abilities and her fine motor skills are gradually improving with age.

In response to this complaint we demand the following explanations in detail:

How the council has come to the decision regarding the level of care for Jennifer?

What criteria needs to be met to constitute a “carers wage”?

How does the council differentiate between elderly and young to conform a decision?

Refer laws and regulations including paragraph quotations and also previous decisions?

To assist in your decision, we can add the following statistics for the year 2012;

6 weeks hospitalization

Over 30 hospitals visits, including 2 emergency visits.

Over 50 visits from physiotherapists, occupational therapists, and PPT.

Other diverse appointments like, psychologists, coordination meetings, kindergarten visits to name a few.

May you bare in mind, that early intervention is crucial in ensuring that Jennifer can become as integrated in society as possible.

Please feel free to contact us any of the above information does not satisfy your requirements.

Regards,

Two very frustrated parents.

Lucky for us we have 2 applications in, this one was rejected by the local government. No surprise really, they have no money. We’ve also lodged an application with social security, but we thought it wise that the local government recieve our well written letter and could do some thinking of their own. maybe just maybe, the next couple who apply will recieve a little more thought!

We’ve tried to be realistic this whole time, we feel it’s the best way to deal with it. Deal with what needs to be dealt with and try to accept what’s before you……

If you’re pesimistic, you’re of no help, nothing will get better and you won’t bother trying. If you’re optimistic, you don’t see the problems, and in turn nothing will get done until it’s too late.

We try as hard as we can to work with everything thrown at us, but it’s been too much for me especially, full time fairly demanding work and then coming home to more work, not that I don’t love working with my kids, has drained me mentally more than anything.

Everyone has their threshhold, now at least I know mine.

Resistance comes from a lack of understanding, and we really shouldn’t hold such strong opinions about something we have never experienced, nor should an application be left to individuals to decide,  based upon on what’s written on a check box 2 sentence application form.

First hand experience is crucial in understanding, an apprentice will never become a tradesman without his master, nor will a child, regardless of their health, become an adult without guidance from their parent.

People have said, when you get over the worst of this, you will come out a much better person, have a much better perspective on life and it will give you the ability to help others who are going through tough times.

And when people doubt you or your children, look at your children, are they happy?

Because that’s the real proof of how you are doing…….

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1 Comment

  1. The first year is tough… but it does get easier I promise. All therapy and other appointments will eventually turn into a normal daily or weekly routine.. Well it has for us anyway. I highly recommend that both of you try to meet with other parents in a similar situation, it helps a lot and they know every feeling and thought you have because they have been there too.
    Don’t forget to be a loving family in all of this, lay on the floor, cuddle, tickle and laugh as often as you can! Xx

    Like

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