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.