My P-ACC

Abbie's MRI

Missing the middle.

Partial Agenesis of the Corpus Callosum

By Abbie Kinniburgh           

My three biggest difficulties……..

Then,  10 – 18 years old

Social

I had no social skills help, for the characterised difficulties presented with corpus callosum conditions, until very recent years.  No one had heard of it or was interested in mine and my parents’ sudden realisation of its impacts.  I was fast approaching  the social roller coaster of adolescence, but with an inability to pick up and follow social norms.  I became excluded, alienated and taken advantage of by ‘so called’ friends, but I didn’t know why.

In a few months I changed from happy and reasonably ‘normal’ to sad, anxious and worried. I was developing social and general anxiety, with phobias and increasing difficulty in socialising and friendships.

I had an extra year in grade six, not emotionally or mentally ready to leave.  It was realised that my interests, thought processes and skills in many areas were behind that of my peers. I now know, this anomaly is NOT well accepted in the fast pace of ‘neurotypical’ adolescence or society.  I began to realise why, most likely, my best friend STILL, when I was approaching thirteen was five years younger then me. In a lot of ways, I was five years younger, maybe more.

Tips from experience:

Before or as soon as you notice the above changes in your ACCer (though every ACCer is different)…

Get social skills help and experiences by…

Choosing the right social offers/programs for YOUR ACCer such as…

Flexible, interested, appropriate and individualized.

 

School

Moving from a small, country primary school with thirty kids and three teachers to a city high school (800 kids and about 50 teachers) was a shock, hurdle and challenge alone. Add a rare brain condition such as a corpus callosum condition to the mix and it was a time of testing OUR tolerance, perseverance and persistence.

I tried three high schools in our new local area, ending up at an all girls catholic school.  It was trial and error for two years trying to find the right attitude, support and environment for my increasing delays, differences and needs.

Still, the next five years of high school from year eight (yep, I completed year twelve!) were in need of much efforts and perseverance from us (Mum and I). I was far from just sailing through.

Tips from experience:

Many meetings with teachers and head staff with…

Outside support to advocate for and convince of my needs such as…

Extra academic assistance, exam provisions and knowledge of DCCs!

Anxiety

At about age ten, I began to develop phobias, such as sharks and thunderstorms and strange looking people just to name a few.  I began seeing the first specialist, addressing this issue that was to be caused by my Partial ACC. I saw a psychotherapist at the Royal Children’s Hospital.  I was terrified of him and his strange methods. I didn’t know it then, but apparently he actually was helping me.
Although this newfound help for me was helping (apparently), I have learned only recently (at 24) that anxiety from corpus callosum conditions cannot be rid of.  It is a unique anxiety that is from physical condition rather then mental illness.  It can not be erased, but can be worked with and around.
At 18, I was only just coping with staying home alone, or going out on my own (apart from school). Partly, because I was, as mentioned, majorly delayed in many milestones in life, and partly because, well,  there was just too much anxiety.   So many scary things!
Socially, I was isolated, anxious, excluded but I guess, JUST tolerated.  I had friends, with completely different upbringings, culture, values and interests from me, with their own issues and quirks.  It was not by choice, it was not ideal, but its’ what I seemed to fit in with.  I went to school, I went home.  I was lucky, I was not bullied and was minimally tolerated.  But I was never included by choice or invited to events, nor were my two friends.  I was, I have to admit, isolating myself more and more.  Everything social was challenging and exhausting, and would only get harder as I got older.  I did not have the skills, and was losing the confidence, getting more and more anxious.

 

The Bunker

The Bunker

Tips from experience:

Notice anxiety- strange phobias, social avoidances, delayed milestones (can be anxiety) and…

Find someone to acknowledge, take interest, believe and support who can help but…

Don’t try to or expect a cure for anxiety. Work with it, around it and through it.

 

 

 

 

My biggest difficulties  ……

Now, 18-24/25 years old

 

STILL

High Anxiety!

People, traffic, speaking, misunderstandings, crowds, noise, the world, thunderstorms (STILL)…. sharks and the aquarium(STILL) and much much more.

 

And

 

Social Difficulties

Anxiety, misunderstanding, delayed skills, different interests, delayed experiences, tolerance from and of others, acceptance from others, exclusion, motivation and …… much much more.

 

 

Picture3

Words

Convincing Others

You look pretty good to me, I don’t notice anything’

‘At least you haven’t got [… insert cancer, diabetes, down syndrome etc.]’

‘You should be more positive. Stop focusing on the negative things’.

These are common responses I experience when the subject of my P-ACC arises.

I wonder…   Why do people feel the need to respond like this, rather then support me?

Maybe they are trying to make me feel better.  But it doesn’t.

Maybe they do really think truth in what they are saying.  Mmmm, not quite right.

Maybe they have little or no interest in the subject.  Sadly, this can be true.

Picture4

Showing the world a happy face

OR… Maybe…

My appearance and actions do not quiet match up to the true turmoil inside me. BINGO!!

Outside, I can walk, talk, eat, drink, hug, smile, laugh, attempt to hold a conversation and control my quirks.   I guess I am luckier than some.

Inside, I am shaking, panicking, puffing, racing, slowing and freezing up all simultaneously.  My brain is running to keep up, my body wants to slow down, mentally and physically exhausted.

Tips from experience:

The better you or your ACCer maybe, the harder it is to convince. BUT… this should NOT stop anyone from reaching the best they can and the most they want.

Whether an ACCer looks OK or not, it is what THEY need, not what OTHERS think they need, that matters

 

Attitudes of Society

ACCers cannot change their quirks or difficulties. Just like…

Society cannot change the many attitudes they have.

At least not in that instance that change may be needed.

It takes a considerable period of time.

When you think about it, ACCers and their families are actually ahead of society in many ways.

Slowly but surely, we reach our goals that most others take for granted.  Often, we find help ourselves.

Society is yet to improve their attitudes, especially towards corpus callosum conditions.

Self Help

Self Help

Tips from experience:

ACCers and/or their families are often a lot more thoughtful in attitudes to others – When you have something lifelong and challenging, such as disability, your thoughts change.

Don’t accept unfair attitudes from society.  Disability should not make you or your child less.

Attitudes of people may or may not change, either way, it will seem an annoyingly long time.

 

I often ask myself when I am faced with this challenge, often daily;

What is the natural human habit?  To convey whatever comes into the mind, or to think and adapt to the present situation?

 

Accommodating/ catering for needs

 

given

What you may be given.

Corpus callosum conditions are not a ‘tick the boxes’ condition.

Often what we are offered in support and services is not what we need, but what we NEED is declined or ignored.

My biggest needs from my P-ACC:

  • One on one assistance for Uni- also know as tutoring.
  • Appropriate regular social activity/ group.
  • Managing anxiety and constant mood/ motivation levels.
  • People to believe, understand, accept and include me, and all ACCers.  Not just tolerate.
Chips camp

More like what you actually need.                                      ChIPS - Chronic Illness Peer Support 2014 camp

Tips from experiences:

Ignore ‘tick boxes’ and ask for what you/ your ACCer need to be included.  Often the ‘tick boxes’ will only frustrate.

Fight for what  YOU/YOUR ACCer needs, not what they are offering.

Address the above needs I have mentioned for myself early.  You may wrack your brains, but hang in there and persist.

 

 

 

Things are great?

Are They???????

The Big Pic – tips from experience….

  • Get help (services, support, knowledge, understanding) as early as possible
  • Work as a team for as long as possible, there is no time limit!

This includes parent/ guardian, health professionals and ACCer (if possible).

 

ON THAT NOTE…

  • Sadly, The more capable an DCCer looks/ behaves, the more they ARE capable of.
    Don’t let this dominate.

 

  • Join support groups!!!-
    • AusDoCC (Australian Disorders of the Corpus Callosum) in Australia and
    • NODCC (National Organisation for Disorders of the Corpus Callosum) in the U.S.
  • Abby & Friend

    My Best Friend

    Get yourself/ your ACCer a pet.

LASTLY….

  • Again…. There is no time limit!

If you have a child with a DCC- encourage them, support them, persevere with/ for them.

If you ARE a DCCer – ‘Let your 20s be an extension of your teens’… yippee!

Despite limits, DCCers can be valued, included and productive members of society.  We just need much extra assistance, support and understanding to get there.

 

nodcc 1

I made friends!

nodcc 2

And found......

nodcc 3

understanding.

 

 

nodcc 4

NODCC Conference 2014 Adults group

 This was written and presented by Abbie at a Melbourne Parent Information session in October 2014.