Day #24. Reblog. My happy is different from your happy and that’s OK!

We’ve had another relaxing day today, catching up with my folks, my brother, one of my sisters, and their families.  My boys just love their cousins.  We went to a local park with a good walking track and play equipment.  The kids rode their scooters around together and laughed and chatted whilst playing on the playground.  It was a beautiful day and lovely to just watch them all enjoying themselves.

Today’s post is another reblog of a previous post about how everyone needs different things to be happy.  I think it’s important for us to remember that we are all different and that we all find different joys in life … and that’s OK.

https://libbyrosentreter.com/2015/04/08/day-8-my-happy-is-different-from-your-happy-and-thats-ok/

happiness 3

Day #22. Reblog. “It’s OK for parents to ask for help!”

Following a significant meltdown on Thursday afternoon at school and a very sleepless night last night, I decided that both boys would stay home today.  They spent the day with my folks and had a lovely time chatting away about their worries and so forth.  We had a very low key afternoon with long soaks in the bath and some Star Wars, and have a calm long weekend planned.  Hopefully, come next week, the wheels will be more ON the tracks than OFF.

Today’s post is a reblog from a previous post – “It’s OK to ask for Help!”  I think we all find it challenging to ask for help because it means to a degree that we have to face our vulnerabilities and admit them to others – a hard task for some.  People do actually love to help where they can – so asking for help can be a gift to yourself and to the person who is helping you out.  We’re all in this together.

https://libbyrosentreter.com/2015/04/13/day-13-its-ok-for-parents-to-ask-for-help/

Day #21. Reblog. Are you feeding the worry bug?

It’s been a really rough week so I’m afraid the next few days will be a series of reblogs of posts from previous years.  You know how the song goes?  “You’ve got to know when to hold ’em.  Know when to fold ’em”.  It’s time for me to fold ’em.

This reblog focuses on anxiety and some great apps and resources to help your child and your family to manage.

https://libbyrosentreter.com/2015/04/26/day-26-are-you-feeding-the-worry-bug/

 

 

 

Day #20. Communication with a difference.

I’ve mentioned before that T often chooses odd ways to interact with you.  When he was younger he used to talk to us in his own language and would become very frustrated with us when we didn’t understand him.  At home, he’s also started sending me iMessages to tell me how he’s feeling or what he needs – usually from the comfort of his bed or his retreat space under it!  My favourite is when he sends only emoticons which aren’t always spot on emotionally, and particularly when he sends voice messages!  He often simply sends a voice message reply of  “uh-huh” as a hum of approval or disapproval.  Hilarious!  He has also gone through stages of communicating to us in his own sign language/ gesture which is also very challenging to decipher.  A recent example of this …

After bath time one evening this week, we all went out to the TV together and sat down to watch a bit of “Star Wars – The Force Awakens”.  We were all just settling on the lounge when T clapped his hands at me.  Then, without talking, he started performing this intricate series of movements, somewhat like mime, whilst simultaneously looking at me to ensure I was receiving this “information”.  As always, I made pathetic attempts at interpreting his free form movements which merely incensed T!  Eventually, I asked him to use words to talk to me but he continued with slightly more emphatic gesturing.

'I think he's trying to pawn his air guitar.'

‘I think he’s trying to pawn his air guitar.’

Finally, when he’d had enough of my failure to comprehend – he said (whilst re-enacting the previous gesturing!), “Mum – it’s obvious! I was being you! I was getting the wheat bag from the lounge and then I was putting it into the microwave – and then I turned the microwave on – and then I was VERY surprised when I got the wheat bag out because it was SO hot!  And then – because I was being you – I took the wheat bag out to me – and then you gave me the thumbs up and I said thanks so much, Mum!”  My reply to this was, “So what are you ACTUALLY trying to say, T?”  His response, “Mum, can you please heat up the wheat bag?”  Sheesh 🙂

'Judging by those smoke signals, they know we're here and they're not afraid of us!'

‘Judging by those smoke signals, they know we’re here and they’re not afraid of us!’

Day #19. Growing up is hard.

J has been rather anxious since he returned to school this term.  I think there’s a number of factors impacting upon his stress levels from NAPLAN testing to general fatigue.  Other issues like his peer relationships and puberty are impacting his anxiety levels as well.  Growing up is pretty challenging for everyone but autism tends to make it just that bit more difficult.

So far J has had a pretty dream run with his peer relationships since he started school.  Just recently however he is feeling unsure socially.  Perhaps it’s because the gap between himself and his peers socially and emotionally is wide at this point of his development.  He’s also not really interested in the things that many boys in his age group are interested in like sports.  And although he really enjoys the company of girls, he’s certainly not at the point where he’s interested in girls in a relationship sense.  J’s view on the girl thing – “Everyone else seems to think that the /s/ word (sex) and girls is really exciting … but actually it’s all just really terrifying!”  Bless him.  All we can really do is just remind him that these feelings are perfectly normal, and that as he gets bigger he might feel differently.

It’s hard for any parent to hear their child is having a tough time but I’m objective enough to know that this is part of the journey of growing up for many kids, on the spectrum or not.  J says that often his peers make him feel like he’s invisible.  He says he prefers to play his video games because when he’s in that world nobody treats him like he’s invisible (his words, not mine).  I find this very hard to hear but I do think it’s very insightful.

The stress of the last week and a bit has resulted in a return to repetitive behaviours which have left their mark on J’s face.  He has been so anxious that he has rubbed his chin over and over, and with so much pressure that he has bruised and grazed his chin.  Poor little man.  We’ve had to reinstate a few strategies known to be successful such as increasing his chewy food intake, giving him thick, icy drinks through straws and using chewing gum.  Weighted products are also really helpful when he’s stressed.

sore chin

Poor J’s chin.  It looks much more bruised up close.  Stress increases the repetitive behaviour.

 

In an effort to calm J’s mind, heart and soul, this afternoon I made him a long, deep bath and we had a long chat about some strategies he can try to help him connect with his peers.  His teacher is beautiful and she is aware of what’s going on for him.  Hopefully between us all we can support him as he negotiates his way through the year.  It’s so important for every child to feel loved and supported at home, and that they always feel loved without condition.  We try our very best to give the boys a soft place to land in our home environment and we are very blessed to be surrounded by an extended tribe who love, accept and support us as we journey along.  Growing up will certainly present some challenges for my beautiful boys but I’m hopeful that the tribe they have around them will give them the love, belonging and connection they need to achieve happiness and well being.

friends 1

Day #18 To diagnose or not to diagnose …

There are so many reasons why a parent or an individual might pursue a diagnosis.  I’m going to talk to our situation here rather than just generalise.

Long before J was diagnosed at age 2, I knew that he operated differently from other children.  He found it really hard to do things that other two year olds did with ease – talk, interact, wait, transition between activities, deviate from routines.  As a family, we were really restricted in what we could do and he was highly anxious and self-harming.  We were in crisis.  Once J was diagnosed, we then gained access to a number of therapies and specialist services such as early intervention which was then targeted specifically to his needs.  By learning about autism, we learned more about how to help him and so did his extended family and friends.  He has grown up knowing he has autism. To him autism is a part of who he is and he recognises the challenges and gifts that autism brings to the table.  When he encounters difficulty with things such as crowds, excessive noise, social interactions and anxiety, he understands that he has a tough time with these things because he has autism.  But he also knows that he has strategies or that he can acquire strategies to help manage them.

I know many adults who have been diagnosed with autism later in life.  Many have expressed that they felt like an ‘imposter’ in the world, that they felt they had to wear a mask, play a part, in order to fit in.  Learning about the condition in some cases has really helped them and those around them to understand them better.  Some of them lament the fact that, had they been diagnosed earlier in life, they may have had access to more services and support to assist them in operating happily and healthily in the world.

diagnosis 2

Some people really balk at ‘labelling’ a person with a diagnosis.  A label does not change who a person is.  A label is simply a way of naming a condition and explaining a set of behaviours.  Having a label allows a person to access services and support to help them when needed.  Having a diagnosis helps you to identify and access the tools this person needs to be happy and healthy in life.  In the case of Autism, the research clearly indicates that the earlier the diagnosis, the more successful the intervention can be.

In my opinion, irrespective of whether it’s anxiety, a learning difficulty, an immune disorder, poor eyesight, asthma or autism, it’s important to name what is happening.  If we don’t name the ‘elephant in the room’ we risk further isolating the individual and perhaps causing them more unnecessary duress.  In labelling/naming what’s going on for someone, hopefully we empower them to accept and even embrace their condition and learn to manage it so they can live happily and healthily in the world, and thrive without limitations.

Diagnosis 1