Invisible disabilities - State of sector report...

Wow the report I am sharing shows a snapshot of invisible disabilities in New Zealand right now.

It has clear messages and I felt sad as I read it because we are not using the knowledge we have of what works and what people need.  This report is another research based document that clearly states what is needed.  It includes the voice of youth with disabilities.  It includes practical suggestions.

Here are some images and messages from the report

Read the report by clicking here

Resilience

I have read a lot about how tough it is to parent children with special needs in social media lately.  Many are beautifully written acknowledging the challenge yet emphasising the positive.

I have connected with each post, related and used these posts to keep me going.

Yet, sometimes it feels like we have to include the positive so we don't let the side down, so we don't put our negativity on our children.  We always need to protect our children.  This is rule number 1.

Sometimes I am negative.  

It has nothing to do with my children who I love deeply and think are the best people in the world.  I am happy to be surrounded by my family who I love dearly and would choose all of them above anyone else if I had the option to choose.

Yet sometimes I feel negative.

This is not about my family.

When I feel negative, it is because being a parent is hard and my resilience is low.

What makes it so hard?  What drains my resilience?

Simply - Other adults.  The comments from other adults, the judgement from other adults, the lack of understanding from other adults, the actions from other adults, the lack of action from other adults, the looks from other adults.  You get the idea...

Don't get me wrong, I don't think these other adults are deliberately making things hard or deliberately stealing my resilience.  Yet their lack of understanding and the judgement that frequently follows makes my life harder than it already is.  Knowing it is not deliberate does not lesson the impact on me or my children. 

It is school holidays now and we are spending a lot of this time at home.  It is easier this way and I recognise that my resilience is low right now.  My kids are happier at home.  They are easier to cope with at home.  My kids and I are not judged or stared at when we are at home. 

We will venture out again when my resilience is higher but right now, it is too hard.  This is the reality of parenting children with special needs. 

Sometimes it is just too hard!

A great article that resonates with me

 

Click on the picture to read the Herald article.

This is exactly how I feel when I take my boys into the world and away from the safety of home.  

Advocating for your child can leave you feeling raw and vulnerable.  There is no rest from this - as a parent of children with special needs, you interpret, explain, excuse, protect and advocate constantly.

 

I read this today and instantly wanted to share it.

This is a really nice perspective that expresses how many people diagnosed with Autism feel.  It also raises the issue of adult diagnosis.  Gaining a diagnosis as an adult is a personal choice but those I know who have made the decision to seek a diagnosis as an adult found the process positive.  I often say a diagnosis is not a label, it is a way to develop a better understanding of the person diagnosed.

Click on the image below for the link to the post.

Too close to home

As I continue to explore information about Aspergers and Autism Spectrum Disorder, I often come across resources that I connect with.  I will be watching a video or reading someone's story and I find my chest getting tight and tears running down my checks.

Well, today was one of those days.  I don't know why I haven't watched it before but today I watched Lizard Girl.  A 15 minute BBC video that has won the following awards

WINNER CHILDREN'S BAFTA: BEST PRIMARY
WINNER THE JAPAN PRIZE: BEST PRIMARY
NOMINATED THE JAPAN PRIZE: JURY AWARD
HIGHLY COMMENDED SMHAFF AWARDS: BEST DRAMA

As I watched the video, I thought I was doing okay.

Yes this felt very familiar to me
Yes I could understand all the subtle messages in this video
Yes I have experienced similar events with my children

The power in this video is that it tells its story from the perspective of a ten year old girl called Sam who has Aspergers.  She is often misunderstood and this is portrayed really well in this video.

I had moments of connection between Sam and my boys.  I had moments of connection with Sam's mum and younger sister.  It felt very real to me and the tears snuck out of my eyes.

It is good to know that others go through the same experiences as me!
It is great to find a video that shows others what it is like!

So as the purpose of this blog is to share what it is like to walk in our shoes,  I really wanted to share this video and my reaction with you.

Click image to watch the video

To Diagnose or Not?

It is a very personal choice whether to seek a diagnosis or not.  I do personally believe in diagnosis but concede that there are definite downsides in this choice.

My rationale for seeking a diagnosis for my children is based on the belief that my children KNOW that they are different and that a diagnosis helps them to understand why and how.  Child H was diagnosed a little later that the others and on being informed of the diagnosis (another topic to discuss later) he stated, "Oh so there isn't anything wrong with me after all!".  He knew that he was not like the neurotypical kids in his class.  He knew that he behaved differently.  He was convinced it was because there was something 'wrong' with him.  His diagnosis gave him a reason for this difference.  It allowed him to develop an understanding of why he reacts or behaves in certain ways that are different to others.  At 11 years old, he still struggles with being different but he does know why and he knows that there are other people who are like him.  He knows that it is not his fault (most days).  My husband shares similar thoughts about his diagnosis.  He sought his official diagnosis as an adult to explain why he is the way he is.  He has at times, felt victimised by a lack of diagnosis.  Diagnosis for adults and females is a challenge as they may not present as young boys with ASD typically do.  Dr Tony Attwood discusses this in the video below.

The other main reason I believe in diagnosis is that it gives you a way to build understanding with those around you.  Being able to explain to people that there is a reason why my son cannot cope with you teasing him, or touching him.  That he isn't being rude when he doesn't look you in the eye and becomes non-verbal when you talk to him.  I find it amazing how many adults/strangers get right up into a child's personal space and become demanding of a particular response.  My children always fail this 'test'.  A diagnosis provides a way to explain the behaviour of my loved ones that hopefully will result in understanding.
A diagnosis will also allow you access to support and services.  It will give you a way to request the support your loved one/s need. 

 So while that is my rationale for seeking a diagnosis I do have to admit that a diagnosis can have a negative impact.  It can be used by some as a label that places limitations and negative stereotypes upon the diagnosed person.  An example is that my children do not get chosen for gifted and talented programmes, in spite of their many 'gifts'.  My son M won a cyber security competition at 15 years old with a full scholarship.  He has immense knowledge and ability with computers that far exceeded his teachers at school.  None of the schools he attended acknowledged or utilised his exceptional expertise in this area.

Many people I know feel that if they are catering for their child's needs and their child is coping at school without the need for additional support, a diagnosis is not needed.  This is a completely valid argument that prevents the labelling of their child.  My only advise in these circumstances would be to monitor the situation to check if they think their child would benefit from a diagnosis personally.   And remember that this diagnosis does not have to be shared with anyone unless you feel there is a benefit to it. 

A label is limiting and will never be a good fit for anyone.  Education and understanding combat labelling.  A diagnosis does not have to be a label!

Expectations and Letting Things Go

Expectations are funny things.  We do this to ourselves for many reasons and sometimes it just isn't worth it.  I thought about making a list of the things I have let go of recently.  Initially, the thought was scary then I decided that it just didn't matter and I should 'let it go'.

When tension develops between my expectations of what my family should be doing and what they are actually doing, I reflect and ask myself ...

Are they happy?
Does this negatively impact on anyone else?
Why am I expecting something different?
Are they capable of doing what I expect?
Should they have to do what I expect? Why?
Is this a battle I want to fight today?
Does it really matter?

Then I am able to choose whether I am going to 'let it go'.  

Most of the time I discover my expectations are not realistic and really aren't that important.

These two examples below are slightly frivolous but exemplify many of the little things I have to let go of on a daily basis because members of my family will not cope with the expectations I perceive we could/should be doing.  Or that we all agreed and planned to do but on the day, someone isn't going to cope.

Yes, there are important things sometimes that we really have to do but at the end of the day, weighing up the stress of enacting the expected action against not doing it becomes a regular reflection.  There have been successes when we have managed the anxiety someone experienced at the beginning, resulting in positive outcomes for all.  And yes, I/we have got it wrong and pushed when I/we should have backed off.  As the children get older we have more flexible options of some participating and others not.

Example 1 of letting things go

My two younger boys had school prize giving.
I felt the pressure to support the school and community and to attend prize giving.
Child H has extreme sensory issues in hall type environments.  He will become overloaded and his anxiety will increase.  His behaviour will change and become more anti- social as time wears on.  Child H arrives home from school with a sore foot the day before prize giving.
Child B usually does okay in these situations but throws up the day before prize giving day.
Prize giving day arrives and Child B is okay but not his normal self...  will he cope with prize giving in his current state?  Child H is still complaining of a sore foot and is not putting any weight on it at all... He is definitely NOT going to cope with prize giving in this state.

Enter the but what ifs to my crazy brain
What if one of the boys gets a prize?
What if they miss out on something by not going?
What if other people expect us to go?

OMG what will people think if we don't go?
Okay so now it is time to realise that if I force them to go, none of us will enjoy the experience, this is NOT a battle I wish to fight and NO it really won't matter if we do not go to prize giving.  My boys will be much happier not going so...
'Let it go!'

Example 2 of letting things go

Kids Golf Christmas Function
The boys had attended and enjoyed one session of kids golf on a Sunday.  They were invited to the Christmas function.  Child H loves golf and has experienced success at the driving range.  This is something that I want to encourage him to do as I believe he will enjoy it and experience some success which will boost his self esteem.   Child B enjoyed the experience and was keen to go again.
I reminded/ pre-warned the boys about the Christmas function the day before and both seemed keen to go.   The morning arrived and I woke both boys and tried to hurry them along to get ready.  Child H was tired.  Child H did not want to go.

My brain thought about our friends who were going and expecting us all there.
I thought about how I really wanted Child H to go as I thought this would be something he would enjoy.
I thought about how Child B would be disappointed that Child H did not go.
I tried to figure out whether child H really did want to go or not?????
I thought about what would happen if I pushed for Child H to go.
Okay so now it was time for me to wake up and smell the roses.
He did not want to go.  No one would enjoy it if I tried to make him go.
The world would not end if he did not go.
Child H would be happier staying home while I took Child B on his own so...
'Let it go!'

I guess my expectations for my family comes from thinking I/they want/need what neurotypical families have.  Sometimes I absolutely do want what neurotypical families have.  But most of the time I value my own very special and unique family and what makes them happy.

 Some people identify with the poem/reading below about expectations - It is usually something people connect with when they first receive a diagnosis for their child.

 

Feeling the Judgement of Others

Being a parent of a child who is not neuro typical can make you feel very vulnerable.  I think one of the saddest things we do in society is to judge parents.  Instead we need to be building understanding of their particular position and finding ways to support them through the challenges of parenthood. 

One Little Monkey Jumping on the Bed!

In public children are constantly judged for their behaviour and that judgement passes on to their parents.  Parents are also judged on how they respond to their child's behaviour.  For parents who have children who don't behave in the expected way, that judgement comes thick and fast.  Before a diagnosis, parents are frequently subjected to comments from 'concerned' adults about their parenting style and perceived lack of skill.  After a diagnosis this continues from many who are uninformed of the diagnosis or those who know the diagnosis but have little understanding of the condition.  Most parents of children with special needs continue to experience judgement in multiple settings on an ongoing basis.

http://quoteaddicts.com/i/3361069

 Today after a stressful event my 11 year old burrowed into me for comfort.  We were getting some food at a foodcourt in a shopping mall.  This can be a difficult place for my son on the best of days.  I was so proud of how he was coping with the mall environment in his current state.  I looked up and met the gaze of an adult who had been staring at my son and his non typical behaviour.  This was the thrid person within a short space of time.  I felt judged!  As she joined her partner she engaged in low conversation.  I felt judged!  She may not have been talking about me/ my son but by then the damage to my own stressed and fragile state had taken place.  I was vulnerable yet again.

The video below simulates what it can be like for a child experiencing sensory overload in a shopping mall.  It also shows how adults around him react to his behaviour as he struggles to cope.

My good news story!

My post on Facebook about the challenge I faced and struggled with today (not the judgement part) was meet with an amazing amount of support and understanding.  I did not feel judged.  I did feel supported by many who strive to understand.   So my advise to anyone travelling this path is to surround yourself with those kinds of people who will sympathise and try to help you even when things seem unsolvable at the time.  People will always judge you and on bad days that can be tough but when your support network kicks in, you recover ready to continue supporting your loved one.