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

Day #17 Behaviour Management ideas

It’s been a big weekend here this weekend and I’m not feeling a hundred percent well – so I’m cheating a bit today by reblogging a post I wrote in 2013 about behaviour management.  This has been one of my more popular posts ever – maybe just because behaviour mangement is such a challenge for all parents and also for teachers.

I hope you find this post to be helpful.  Take care all 😀

https://libbyrosentreter.com/2014/04/20/autism-awareness-day-21/

flwoer

 

Day #16. Just for laughs.

Some random quotes from my boys … just for giggles 😀

J: Thanks soooo much, Mum! How did you know I needed help untangling the leads on my headphones? M: I just knew. J: Mum, you are totally side kick!!!

(side kick = psychic!!!!)

(cue teaching moment about psychics!)

Handing J his toasted sandwich for lunch …

M: There you go darl … Merry Christmas! J: Thanks Mum. Merry Christmas to you too.

M: <<muttering to himself as he walked away>> Poor Mum … she’s totally lost it. She actually thinks it’s Christmas!

happy 2

 

J whilst live partying online with his Xbox friends …

“I LOVE the look of these characters. I just LOVE the art! The “de-sig-ens” are so amazing!”

(“De-sig-ens” = designs!!!)

 

 

Driving past a local cemetery the boy’s father commented …

C: Oh look boys! It’s the dead centre of town (bad Dad joke TOTALLY lost on the boys!) And you know boys … you should NEVER go to the cemetery at night …. because that’s when the zombies come out! <<cue maniacal laughter>>

T: Seriously Dad … everyone knows that zombies are extinct … so that is not going to happen.

Boys 3

 

 

Teaching the boys about white lies …

M: Generally you should always tell the truth but sometimes telling the absolute truth can hurt someone’s feelings. In that case, it’s OK to tell a white lie.

J: What do you mean, Mum?

M: Well just say someone asked you if you thought they had a big nose … if you said yes … that might hurt their feelings don’t you think? So in that case you might just tell a white lie … and tell the person that you think their nose is not big and that’s it perfect just the way it is.

T: Well if someone asked ME that question I’d just say yes you DO have a big nose … because if they DO have a big nose … then it’s actually wrong to say they don’t … because it’s obvious.

M: But it might make them sad to know that you think their nose is big – it might hurt their feelings.

T: Mum, if that person looked in the mirror they could see for themselves that their nose is big. If I TOLD them their nose was NOT big they would KNOW I’m telling a lie because they would look at their own nose every single day and KNOW that it is big!

M: Sigh …..

 

 

We rarely deviate from routines but one day I was unavoidably detained at a school with work, so my newly retired Dad kindly went to get the boys from school. J was not impressed at the change to the usual and expected routine. Later on when he was expressing his dislike for his routine being upended.

J: Mum – I really love GrandBob and I really like his face … but not on Thursdays!! I like seeing GrandBob’s face on Wednesdays … Wednesday is GrandBob’s day! That’s the day I like his face the best!”

 

happy 4

Day #15. The challenges of medication.

Medication is an extremely complex issue.  At the end of the day, no parent really wants to medicate their child.  We worry about the side effects of taking medications whether the prescription is for short or long term use.  It’s often hard to trust the advice you’re being given by doctors and therapists.  It’s often hugely challenging to get your child to take the medication particularly if the child has sensory and/or eating issues.  It’s hard to decide when and if the child should come off the medication.  It can be difficult when your child is settling in to new medication.  It can take up to six weeks to see any results of the medication and there is often a tendency to give up on the meds and come off them before this time frame is complete. And then, like all things relating to parenting, there’s the guilt and the fear of judgement from others.  It’s always been curious to me that if we medicate a diabetic or epileptic child no-one questions whether this is the best choice for the child’s health.  But when it comes to anxiety, mental health issues, OCD, ADHD or other medically diagnosed conditions, people are so quick to criticise a parent’s choice to medicate.  It’s rather hypocritical.  Medication is indeed an  extrememedication 2ly complex issue.

I have some tips for you which I hope you might find helpful.

When it’s time to medicate, as a parent you know that you’re really out of other options.  You’ve generally already tried alternative therapies, counselling and other supports but your child’s functionality in their daily lives is still a challenge.  If you’re feeling anxious, judged or overwhelmed by the decision about whether or not to medicate, it might make it easier to try to view medication as a “window for learning” and create a trial period time frame for the medication trial.  This certainly helped me.

In my mind, I decided we would trial the medication for 3-6 months and then we would re-evaluate.  Additionally, this medication provided a ‘window for learning’ – a window of time in which the child was likely to be quite responsive to therapy and learning new strategies for managing things such as self-regulation and anxiety.  This made it easier for me to get my head around the decision and made it all seem less final.  I could mentally commit for 3 months.

Often, medication IS only required for a short window but in the event that your child really does need to stay on the meds longer term, this ‘trial’ period or ‘window’ allows you and your child with some time to get your head around.  If medication is about improving the quality of your child’s life, helping them to function more fully and more happily in their daily lives, and/or assisting them to feel better, sleep better and engage better then to me it’s certainly worth trying.

So what do you do if your child cannot swallow tablets? medication 8

  • At the point the doctor is prescribing the medication, ask what forms the medication comes in.  If it only comes in tablet form, you might make a request to have the medication compounded (put into liquid form) so that it’s easier for your child to take.
  • If your child’s medication only comes in tablet form, try crushing the tablet and put it into a liquid such as juice (check with your doctor to ensure this doesn’t compromise the efficacy of the medication.  Long acting/ slow release medications generally cannot be crushed – so ensure you check first).
  • If your child is really struggling with the taste of the medication, try some of the following options.  Chocolate sauce is very good at concealing the taste of medications.  Ice-cream and yoghurt are also quite good.  Personally, I’ve really struggled with this issue and the only thing that has worked for me is to keep flat Coca-Cola in the fridge and use it.  It may seem perhaps ill advised for me to use Coke but it’s better than the alternative which is no medication and very unhappy children.  Whatever gets the job done.  Of course, always seek your doctor’s advice to ensure that whatever option you choose is safe and doesn’t impact upon the integrity of the medication.
  • Another little trick I’ve discovered is ice!  Before giving your child their medication, give your child some ice to suck on.  This numbs the mouth and takes the edge off the bad taste of the medicine.  Putting a metal spoon into the freezer before placing medication on it can also be a great distraction.
  • Associating rewards with taking medication is a great way to motivate your child to take their medication.  You can reward with treats or with games or outside activities – whatever your child’s currency is.

How can I teach my child to swallow tablets?medication 9

  • Swallowing tablets can be a huge ask for many kids but can be especially challenging for children with sensory issues.
  • I found it easiest to start with little chards of ice.  The boys understood that ice would melt so there was absolutely no way it could get stuck in their throats and choke them.  Once they accomplished this we experimented with swallowing tic tacs and then M&Ms.
  • The boys seemed to find it easier to swallow the tablets using a water bottle as opposed to using a glass of water.  Straws are also good.

 

Resources:

A new therapy program aimed at helping kids to swallow pills.  It starts simply by getting children to swallow water with their heads in different positions – left, right and middle.  The also teach the “duck shake” to get the pill into the back of the mouth.

  • Place a small lolly (tic tac, nerds, M&M) on back of tongue
  • Sip of water
  • Duck shake (shaking of head from side to side – gets pill to back of mouth)
  • Assume a number of head positions and practice each position.  Thumbs up or thumbs down – has the tablet gone?
  • Practice this daily for 5-10 minutes for two weeks.

 

http://www.pillswallowing.com/intro.html

Resource for parents on helping your children to learn to swallow tablets.

 

http://kansasasd.com/classroommat.php?view=item&aid=783

Social story about taking medicine.

 

http://okey-dokey.com.au/resources

“I can take my medicine” – Primary school aged social story.

Portrait of cheerful boy showing thumbs up gesture