Today is World Mental Health Awareness Day – This is Us

We live with two wonderful children.  Very individual children.  Both have autism. A mental health condition.

Below is T.  Our high-functioning football-obsessed boy.   Off he trots every day to catch that school bus to his mainstream secondary school.  Coping with all the challenges of a busy school, without much allowance for his autism because 1) he hates to be fussed over and 2) he stores everything up until he gets off that coach at the end of the day.

We put off getting a diagnosis for T until he was in year 6.  Part of me thought we’d just be told it was bad parenting – especially the food issues – and other part knew that this “label” was necessary if support was ever needed in the future, whether educational or CAMHS.  At the same time, I worried that a “label” would change the way people perceived him, his football team mates for example.  But his traits, traits that have always been such a part of T, were becoming more obvious and this was setting him apart from his peers.

He can’t tolerate “wet” food so has a quite limited intake.  It’s something that we talked about with him and he’s aware that sportsmen need their pasta, potatoes, proteins etc but he just can’t bring himself to eat those foods.  We’ve been told previously not to “spoil him”, that he’s being “fussy” and that if he only gave him the foods he disliked he’d soon “give in”.  He won’t.  It’s a sensory issue and one that only he can decide to try and overcome.   Apart from anything else, he’s inherited my stubbornness – which can be a good thing.

And then there’s D.  It was more obvious with D more-or-less from birth that she had issues around situations and severe anxieties.  

For years, it was only me that she would allow to push her buggy (even as a baby) or comfort her at night.  Anyone else, even Hubbie and she would scream and scream.

From the first few days in mainstream nursery, it was apparent that she was not fitting in, not tolerating people near her.  In addition her speech was very stilted and she had OCD issues with toys/routine/everything.

Her diagnosis came at 4.5 years and it was then a wait until a Statement of Educational Needs was granted (at the second attempt) before she could transfer to the SN school environment that she so desperately needed.

On the rare occasions she’d get into a classroom, she was overwhelmed by the atmosphere of a typical classroom.  It frustrated me that she was placed on the table with the lowest level children because there was nowhere else to put her.  She could count to 100 at 3 years old but couldn’t answer a question or participate in assemblies or enter the school hall for lunch.

Fast foward a few years in SN school and she’s doing really well.  She sang in an audition for a school play this week and loved it.  That takes guts doesn’t it.  But on the same day she was in tears at the end of the day because her coat wasn’t in its usual place and she didn’t have the confidence to ask her teachers for help.  It’s the unexpected unscheduled events which completely throw her, whereas the audition was scheduled.

 
What does the future hold for them both?

I don’t know. It scares me to consider it.  D will have support up until the age of 25 because she has a statement, maybe a work placement? T won’t and this concerns me because he’ll be expected to just get on with things, because he’s high-functioning.

Will there be relationships? With similar young adults or neuro-typical? I worry that they’ll be taken advantage of, that Society just doesn’t tolerate a disability that can’t be seen.  
  
There’s me, above.  Here I am with D’s comforter @autismbunny.

If they made worrying an Olympic sport, I’d get a medal! It all overwhelmed me late last year and I ended up crying in a doctor’s appointment because the constant “battles” with hospitals and educational bodies got to me.   I was worn out and wasn’t sleeping.  

It took a lot to speak up and ask for help but I’m glad I did.  I was crying over the slightest things, which wasn’t good for me.   I was prescribed some tablets for depression and a course of CBT.  

The CBT course was worth doing and it was basically around thinking beyond any initial thoughts or fears and rationalising them.  

Fast foward to now and I’ve been off the tablets for over two months and generally okay.  I say “generally” because previous stress and medication have left me with a physical effect, something that hasn’t cured and probably won’t.  I’m not brave enough to post pictures, they stay with me and Hubbie (who I need to cuddle more, he is my rock).

So, could you tell from any of those pictures? The autism? The depression? 

It takes a lot to look beyond any initial judgements and perceptions.   Before D’s diagnosis I didn’t know much about autism, I hadn’t really come across it.  I’m learning every day about living with our autistic children, it’s akin to risk-assessing everything and despite their need for routine, no two days are the same.

I will never know enough about autism and I will never stop trying to raise awareness of this and other “invisible disabilities”, that’s why I started blogging.

Thank you for reading Jx

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