Testimonies From Parents

Can’t find the time to get your occupational therapy homework done?  Here is what works for me…

Hi there!  I’m a mother of a 5 year old boy diagnosed with Asperger’s.  He’s had his diagnosis for a little over 18 months now, and it’s been 2.5 years since I first started the endless rounds of appointments with paediatricians, psychologists, speech therapists, occupational therapists, special education units and now school.  As a parent, the whole process is frightening, completely overwhelming, expensive and time consuming.  Sound familiar?  I felt like I was drowning in all the extra things that I needed to do to help my son.  Never mind that I also had another two children, housework to do and dinner to cook!  I felt exhausted.  Being a parent is definitely the hardest thing I’ve ever done.  For those who have children with special needs, I want to extend to you my heartfelt compassion because some days are very, very hard.

The purpose for writing this piece is to hopefully help you get the most out of your occupational therapy sessions.  A few weeks ago I attended a course which was meant primarily for occupational therapists.  I was surprised at the gap between what the therapists really wanted to do in sessions, and what parents or teachers actually took on board.  I’m hoping that by telling my story of what works for me, that it may also help you.  As with any advice, use what you think will work for you and ditch the rest.

 

“The more that you move your son, the more literate he will be”

My therapist said this statement to me in passing one day, and it’s had a profound impact on me.  You see, I was concentrating on all the other stuff that I thought my son needed.  He was about to start Prep, and I was focused on getting him to hold pencils, write his name and use scissors.  I was trying to run before I could crawl.  I thought you just held a pencil and learnt to form letters and numbers in the correct way.  I didn’t realise how fit a child’s body needs to be before their hand is strong enough to hold a pencil, or to be able to hold themselves up sitting at a desk.

Here is conflict number one.  When you as a parent are paying for therapy, you want to see that therapist helping your child with the things you think they are struggling with eg handwriting.  If you go along to a session, and all you see your therapist doing is bouncing your child on a trampoline, you’re likely to think – “what am I paying for?”  A therapist needs to really get your child’s body moving before they can give them any help.  They need to really determine how they cope with all different types of movement and sensory input (more on this later) and they also need to get your child’s body warmed up so they can actually complete tasks like handwriting and scissor work.

In a nutshell, you will spend hours wasting your time and money at therapy if you don’t concentrate on exercise and movement first.

The golden rules…

  • The foundation block of occupational therapy is movement and strength.  It’s that simple.  The more that your child moves, the more literate they will become.  Exercise has that much effect on your body.
  • Realise that you know how to parent your child.  You have so much to contribute to their therapy.  No-one else can drive their therapy and school support like a proactive parent.  A therapist is not with your child each day.  Start writing down habits that your child has, and become your therapist’s eyes and ears.  The more information you can give, the more they can help you.  It also saves you money.  Every single child is unique and has different preferences and habits.  The quicker your therapist gets to know these, the quicker your therapy can progress.
  • Value what your therapist has to say.  I’ve got to be honest, I couldn’t comprehend how brushing skin would help a child stand in line, but over time I’ve learnt a lot more about sensory processing and how the brain works.  It’s true that OT’s definitely ask you to do some weird stuff at times!
  • Learn more.  Google sensory processing (how the brain interprets the information that we get from our senses eg touch, taste, smell, vision, hearing etc), central nervous system, self regulation, fine and gross motor skills.  The more you know, the easier your day to day life will become.  I’ve found one day workshops very beneficial.  Ask your therapist for more information.

 

BUT, I don’t have time…

I don’t know the answer to this question, and over the last twelve months we have changed a lot of daily habits purely through trial and error.  This is what works for us:

  • Simplify your life (this is still a work in progress).  Initially, we enrolled our son in sport, but to be honest, it just became another thing that I had to get done.  I quickly worked out that the more I incorporated my therapy into my everyday life, the easier it is to get therapy done.  I do any kind of exercise. Your therapist will give you a specific programme, but I found that simple things are the best. I worked out a plan on getting to and from school.  We ride bikes to school, (my son is on a tag-along), and for the afternoon pick-up we walk part of the way home.  I park at a friend’s house and conveniently, she lives on a bit of a hill, so I get my son to push our baby in the pram and that’s his “heavy work” done for the day!  Keep it simple and start with 10 minutes before and after school.
  • Make your exercise social.  There are 3 families who walk home from school together.  In total there are 9 kids.  My son is the only one doing therapy.  During this time he gets his exercise done and he also completes some of his speech therapy homework too.  Parking further away from school and walking makes a big difference.  The good news is that the 15 minutes you spend walking is about the same amount of time you sit in a congested school car park, so you’re still on time for any after school commitments!
  • Ask for help.  Especially from your therapist.  You just need to take a leap of faith.  It’s ok if you lack motivation or don’t know where to start.  A problem shared is a problem halved.  Communicate and build that connection with your therapist.
  • Since doing the course, I am now trying to incorporate some more “heavy work” before school.   I make it into a competition, but they are bouncing around the table like a kangaroo, sometimes hopping on one leg while I butter toast, and their all time favourite is having a pillow fight!  It’s sounds chaotic, but since I gave away at least half of their toys (in my simplify my life phase), I find that doing some of these things in the morning is not nearly as bad as getting them to pick up toys and tidy their rooms
  • My all time favourite is to get the kids doing their chores.  All that sweeping of the floor and vacuuming is all classed as “heavy work”.  I’m thrilled!

Parenting is relentless.  There is never enough time for everything.  Concentrate on the fundamentals (ie movement) and keep your exercise simple.  Start by giving yourself something you can achieve.  You don’t need loads of equipment, you just need to do something each day.

The person I am now is not the same one as 18 months ago.  In between, there have been many tears, frustrated moments and a fair dose of despair at times.  In the end I came to realise that I had to change my attitude.  The diagnosis wasn’t going away and I had to deal with it.  Your beautiful child is unique, and has their own strengths, just like you and I.

Originally, I did a course because I wanted to understand more about sensory processing and then I ended up writing this piece.  My techniques may not work for you.  My message is to simply convey that running, skipping, jogging, hopping, playing hide and seek, tickling, tug of war, wrestling, being a super hero and playing at the park will help your child enormously.

 

SPD – Sensory Processing Disorder… What does it mean?

My son has Asperger’s Syndrome and therefore has sensory processing issues.  These issues can be the same as SPD, with the added complication of not being able to communicate.

So what do some of these issues look like in real life?  Let’s take a look at a very common activity – a trip to the shops to buy the weekly groceries.  Sounds easy doesn’t it?  Right then, let’s go.

It’s a Monday morning, and my only tasks for the day are to buy groceries, and try and clean the house.  First, I have to give my son breakfast.  It has to be bran flakes.  He has eaten bran flakes every morning for years now.  Every now and then I try to introduce him to eggs, or even just a different cereal.  It’s the same result every time, he gags and throws up.  Next, it’s time to get dressed.  It should be an easy option with a cupboard full of clothes, but no, he has to wear certain items, ones that aren’t itchy or scratchy even though they feel completely the same to me.  He also must wear shorts whether it’s hot or not.  Luckily for me he does wear jumpers, but long pants are completely out of the question.  Thankfully, he does like the electronic toothbrush, so his teeth are cleaned well, but he hates, hates, hates having his hair brushed, so in the end I’ve cut it short instead.

Now that we’ve negotiated all the different preferences just to get ready in the morning, it’s time to strap on our seat belts in the car.  These days, my son copes well in the car.  He doesn’t mind the humming of the engine or being confined in a car seat, however we have had plenty of times where he has thrown up from distress of being in the car.  Our worst experience was flying (we used to live in the UK).  When we moved to Australia our son screamed on the plane for eight hours straight until he lost his voice.  Nothing would placate or soothe him from the constant hum of the plane, and the plane even ran out of ear plugs for the other travellers!  It is by far the worse flight I have taken with my own children or any one else’s for that matter!  Anyway, back to the car, we’ve arrived at the shops nice and early to make sure that I have optimum conditions for this outing.  We carefully negotiate our way to the grocery store, taking care to avoid any shops that have vacuum cleaners going.

Once we’re inside the store, it’s a mad dash and grab affair.  We’re literally flying down the aisle’s throwing whatever we need in the trolley.  There is no time to go back for forgotten things.  The combination of unexpected announcements over the loudspeakers, the smell of fish from the deli, harsh fluorescent lights, a couple of passing comments from well meaning strangers, and the bombardment of the bright packaging on food items are all just too much to handle.  It will end in a melt down, it just depends how bad that melt down is.  My only consolation is that hopefully I can get back to the car without having to take him to the toilet as the dryers in the toilet will send my little one into over drive.  There is no pottering about and definitely no chance of stopping for morning tea in a coffee shop.  It’s straight home for us.

Once the groceries are unpacked and my son has calmed down a bit, it’s time to start cleaning.  I only have to open the cupboard door to take the vacuum out and he’s out the door and up the back yard.  I don’t clean with anything that has overpowering smells or use lots of fragrances as it’s just too much for his senses.  I cook everything and have discovered all sorts of oddities like its ok to eat a banana as long as he doesn’t touch it.  He only drinks water and nothing else, no juice, no milk, just water (luckily for me he has chosen the healthy option).

Fifteen months ago, I went for my first assessment with an occupational therapist.  What an eye opener!  Things that I had put in the “too hard basket” all of a sudden made sense.  All kids can be fussy eaters – right?  Well yes, they can but not to the same degree as what I’m talking about.  Lots of children don’t like loud noises don’t they?  True, but they shouldn’t be running out of a public toilet shouting with their hands over their ears!  A lot of kids have favourite clothes – true, but not to the point where you have to buy socks every couple of weeks because after the initial softness has worn out, and they can’t bear to wear the old socks anymore.

We now consistently see an occupational therapist to help my son with his gross and fine motor skills and his sensory processing.  What a difference therapy and education can make!  It really is empowering for me to understand why my son does certain things and what I can do to help.  The best decision I have ever made was to get help, so now I can get back to being Mum.  I can’t recommend it enough!