Autism Awareness Day #30

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Today is the last day of Autism Awareness Month.  As always, I have enjoyed the opportunity to focus on our journey, to express gratitude to the people who have shared it with us and to celebrate the many blessings in our life as a family.

As I’ve been writing over the course of the month, a familiar theme keeps coming back to me and it relates to the story I relayed called “The Crayon Box that Talked” by Shane DeRolf. https://libbyrosentreter.com/2014/04/05/autism-awareness-day-5/   The story compares people to crayons in a crayon box, and it reminds us that despite all the differences crayons have, without each and every crayon, it would be impossible to create the perfect picture.  This is so very true of life.

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What is normal anyway?  “Normal is just a setting on the dryer”.  These days we tend to want to pathologise everything.  If you’re not particularly social, then you have some kind of social disorder.  If you’re hugely into sport to the exclusion of all else then you are labelled as obsessive compulsive. At the end of the day, it’s OK not to be a people person and it’s OK to love sports so much that you invest time most of your spare time into it.  I am not trying to trivialise things here.  There is certainly a time and a place to name, accept and intervene in certain behaviours which may be clinically identifiable and diagnosable.  The labelling of these conditions allows individuals to access resources that would otherwise be unavailable to them.  These labels possibly help these individuals to understand themselves better and may aid them in acquiring the skills and interventions required to manage their condition.  These are all positive things.  I just think we have to be cautious as a society not to over-pathologise ‘differences’ amongst people.

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As I re-read my “Top 20 tips for ASD Parents” list tonight I thought to myself – really, if you took out the couple of direct references to autism and diagnoses, this top 20 list could be useful and relevant  to all parents, of all kids, everywhere.  https://libbyrosentreter.com/2014/04/29/autism-awareness-day-29/ After all, don’t we all want the same things for our children – happiness, good health and a sense of self worth and purpose? Don’t we all need to ask for help sometimes? Don’t we all need to make more time for ourselves and for our families?  Don’t we all need to learn to ask for help on occasion? Don’t we all need reminding to be grateful for our child’s strengths and to celebrate all their achievements?  As parents, we all live in the same crayon box too and our journeys are perhaps not that dissimilar.

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Every child has their own strengths and weaknesses, their own likes and dislikes.  Every child faces challenges and experiences difficulties at some point in their development.  ASD kids and neuro-typical kids are really not so different.  They are simply just different coloured crayons living in the same crayon box.  It is our job as parents, teachers and good human beings, to encourage our children to value all the crayons in their crayon box, and with this acceptance I suspect the most beautiful of pictures will emerge.

Love and blessings to all of you and your families 😀

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Autism Awareness Day #29

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My Top 20 Tips for Parents of ASD Children … in no particular order ….

1.  A diagnosis doesn’t change your child.  Your child is still the same beautiful child you met the day they were born.  A label does not change this.

2.  “If you’ve met one child with autism, you’ve met ONE child with autism”.  All our children are unique with their own personality traits, likes and dislikes.  Autism doesn’t change this.  It’s important for teachers and for parents to recognise that your child is unique and has their own individual strengths and challenges.

3.  You are the “expert” on your child.  Don’t be concerned with others opinions about how you choose to parent your child.  Nobody is more qualified to make choices and decisions about your child than you. Your opinions and concerns are valid and should always be given utmost respect and consideration by anyone working and interacting with your child.  Trust your instincts. Often our children aren’t able to articulate their thoughts and concerns like their peers can. If you think something is wrong, it probably is. When it comes to your child trust your paternal instincts about their capabilities and challenges.

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4.  Remember that behaviour is a form of communication for our kids.  Look beyond the presenting problem (behaviour) to identify the true source of the problem (trigger).

5.  Be informed.  Learn as much as you can about Autism and any other co-morbid conditions your child may have.  Read books and other literature, ask lots of questions of your specialists and therapists, join a local support group, participate in online forums and endeavour to connect with others who can help you remain knowledgeable and connected with ASD oriented happenings in your local area.

6.  Work on your child’s strengths.  So often we are focused on “fixing” or intervening in behaviours and challenges that we forget the huge value of your child’s strengths.  Perhaps your child loves horses or music or technology.  This could be a future career path for them.  Nurture, encourage and value these strengths both at home and at school.

7.  Self-care is extremely important.  “Rest and self care are so important.  When you take time to replenish your spirit, it allows you to serve others from the overflow.  You cannot serve from an empty vessel”.

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8.  Try new things.  Although our children can tend to love routine, structure and the familiar, don’t forget to provide opportunities for them to experience something new and exciting.

9.  Breaks! Breaks! Breaks!  Our children require regular breaks throughout the day whether at home or at school to ensure that their stress levels remain low.  These breaks will help with overall engagement in learning and interactions throughout the day, and they are important whether you’re at school, at home, at a party or out shopping.

10.  Look after your partner and your relationship.  Make time for one another and consider some regular counselling for the two of you to help manage the stress and to keep you both connected.

11.  Teachers – try to be sensitive to the stresses and needs of the parents.  They have been walking this road for some time before encountering you and they will be doing it long after your role in their child’s life is over.  You can make such a huge difference to the present simply by supporting, listening and by choosing to be a part of the solution, not a part of the problem.  The key to success with ASD kids is building a solid rapport with them and a great way to do this is through their personal interests!

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12.  Create a community of care around your family and your child.  Remember the saying – “it takes a village to raise a child”?  This is so very true.  Create a supportive community of therapists, teachers, friends and family who will support you and your child in the journey.  Work together as an interconnected team for a common purpose – the happiness, well being and progress of the child.

13.  Don’t get so wrapped up in intervention and therapy that you forget just to ‘be’.  Many parents feel a need to be constantly actively intervening and providing therapy for their child.  I think one therapy and one activity (such as swimming lessons) is enough in any one term.  If you do more, you will simply burn out.  Our children need time to play and enjoy being a child.  They need time to just ‘be’ and so do you as a parent!  Enjoy your children despite their challenges. Involve yourself in their interests and introduce them to your interests. Find activities you can do and enjoy as a family and always make time to connect and enjoy one another.

14.  Spend time with others who understand your journey.   Join an ASD support group and meet other families who can support you and provide you with mentoring when needed.  It’s really lovely to spend time with people who truly ‘get’ your situation and where your children can play and interact without judgement.

15.  Never be afraid to advocate for your child and be assertive when it comes to their needs.  If they require reduced attendance at school due to anxiety and/or fatigue – request it!  If you think school swimming lessons are too much due to anxiety and sensory issues – communicate that concern.  If your child is having huge meltdowns at the end of every day – talk to the school; communicate your concerns and be a part of creating a plan to improve this.  If you don’t think the prescribed course of therapy isn’t working for your child – voice your concerns.  Advocate and communicate.

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16.  Always remember that bumps in the road are to be expected.  We can’t learn if we don’t make mistakes and feel uncomfortable on occasion.  When things get tough, remember that they will eventually get better.  Just take things day by day, and try not to become overwhelmed when you hit those inevitable bumps in the road.

17.  Asking for help is really hard but it is important for your own well being and that of your family, that you learn to ask when you need help.  Many of us feel that asking for help is a sign of weakness or an admission that we are not coping.  Accepting help from someone else is allowing that person the opportunity to share their gift with you.  There are so many helpful things friends or family could do for you which would lighten your load eg grocery shopping; running errands (posting a letter, going to the Chemist, taking a pet to the vet;) taking non-ASD children out for a fun day; listening; minding non-ASD children for an hour whilst you attend therapy; doing your washing or ironing; preparing a meal.  “Ask for help, not because you are weak but because you need and want to remain strong!” (Les Brown)

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18. Remember that autism is a reason, not an excuse. Our children require parameters, boundaries and limits perhaps more than their typical peers do. Don’t be tempted to make excuses for poor behaviour/choices and encourage your child’s support team not to do this either. All children tend to try and often succeed in meeting our expectations – so let’s ensure our expectations of them are appropriate. “There is no passion to be found in settling for a life that is less than the one you are capable of living” (Nelson Mandela).

19.  Disclosure.  In my view, disclosing your child’s diagnosis to those around them goes a long way to developing others’ understanding, tolerance and support for your child.

20.  Appreciate the small successes, the small improvements, the small gains.  Celebrate every small success!

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Autism Awareness Day #28

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On the weekend I attended the opening of the new “Baillie Swim Centre” at the Baillie Henderson Hospital, corner of Hogg and Torr Streets, Cranley, Toowoomba.  Baillie Henderson will be undergoing some big changes over the coming 5 years.  Most of the patients have been moved out into the community with support, and only about 60 patients remain onsite.  Baillie Henderson will become a hub for Queensland Health administration.  As a result, there are lots of improvements happening onsite including road works and renovations.

One of the truly exciting changes for Toowoomba families is that “TJ’s Swim” has taken over the lease on the pool, and will be running a truly unique program and resource to our community. As well as running Learn to Swim programs, Squad programs and Swim fit classes for adults and kids of all abilities, TJs are aiming to provide a more specialised service to individuals with special needs.

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There is beautiful, indoor, heated 25 metre pool. The roof contains a dehumidifier system which means there is no stifling chlorine smell and humidity in the pool area.  There is ramp access to the pool and bars around the outside of the pool.  There will be a facility to be able to book a space in the pool which can be cordoned off so that you can work with your child in the water without other people in your immediate proximity – great for ASD kids.  You are able to hire the entire pool for private parties if you wish.  Individualised programs based on your child’s needs are available.

For adults there are squad training sessions for all fitness levels, in water swim and strength exercises, aqua spin classes, classes for expectant mothers, mums and bubs classes, aqua Zumba classes and water running classes. Personal Training sessions are also available.

Also available (and I am SUPER excited about this one!) is a hydrotherapy pool. Again, this has ramp access and caters for all abilities.  There is a specialised assistance chair in the water for children with physical disabilities and there is also an underwater viewing window which offers reassurance for reluctant swimmers and also may offer support for more advanced swimmers wanting to observe swimming strokes and the like.  It is possible to hire part of the hydrotherapy pool or all of the pool, depending on your requirements.

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In addition to the pools there is a fantastic outside area for some quiet time, as a place to wait or somewhere to have a pre or post swim snack. There is also an activities room.  It is possible to hire this space.  Over time, the centre hopes to offer specific classes in there from art classes to fitness classes for kids.

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We are so fortunate to have a Swim School in Toowoomba who are passionate about supporting kids with special needs.  The facilities are wonderful and sensory friendly.  The team are keen to hear any ideas the community may have about how they can best cater for your needs so please get in touch with myself or with them if you have some ideas.

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I am so delighted and incredibly grateful that Toowoomba is offering so many wonderful, professionally run services for our children and families affected by Autism.  Please show your support by spreading the word about this wonderful service.  Thanks TJ’s Swim!!!!  << contact information below >>

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If you have any suggestions, or questions about the “Baillie Swim Centre” and its programs, you can contact them via the methods below.

Website:              http://www.tjsswim.com/

Mobile:                0429 465 316

Email:                   tjsswim@gmail.com.

Facebook:           https://www.facebook.com/pages/TJs-Swim/322887961079029?ref=br_tf  

 

Autism Awareness Day #27

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Yesterday, Chris and the boys and I experienced something really special . We took the boys out to Boodua, about 30 minutes outside of Toowoomba, to visit Bellamour; a beautiful, open and welcoming place which aims to engage children with Autism through animal therapy, garden and farm therapy, and other evidence based therapies.

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James with Coco – they struck a natural bond.

Bellamour is a not for profit organisation founded by Trina Brown. Trina is the most remarkable, intuitive and inspiring woman.  Her motivation to create a haven for people with Autism was inspired by her son who is on the Autism Spectrum.  This combined with her Veterinary Nurse experience drove her to desire to have a place where children with autism could come and connect with the animals, without judgement and without the pressure of anyone else’s expectations of them.  Bellamour is a place where the children can just simply “be”.

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Tom giving both Willow and Eddie a tummy tickle.

There is plenty of evidence to support the fact that a connection and interaction with animals is stress reducing, calming and good for one’s general well being. Many children with Autism live with anxiety on a daily basis so being at Bellamour has the therapeutic effect of reducing stress and bringing a sense of calm to the children( and also to their parents!!!).

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James preparing to have a ride on Maestro.

The University of Queensland is teaming up with the team at Bellamour to look more closely at animal based therapy and how they might be able to record and measure the benefits of this therapy and then ultimately replicate, extend and improve the techniques and methods being used at Bellamour in other settings. This is such an exciting project!

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The reaction of our boys to Bellamour was interesting. Both boys love the outdoors and they love animals.  Tom is the more hands on child.  He loves animals and is quite fearless in his interactions with them. James likes to observe the animals from afar but is cautious in touching them.  Tom arrived at Bellamour quite hyped up and excited.  James arrived quite nervous and a bit on edge.

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James finally touching Maestro – particularly loving looking deeply into Maestro’s eyes.

Within about 20-30 minutes, Tom was quiet and calm, James had relaxed and both boys were interacting and connecting with the animals. It was such a natural and unforced process.  James’ confidence with the animals grew and he began patting the dogs and touching the horses.  Tom calmed right down – his entire pace slowed down.  By the end of the visit, Tom was so tired that Chris had to carry him to the car – simply the impact of finally getting to point of calm and peace.

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Tom – finally relaxed and calm!

I would like to thank Trina and all her generous volunteers for offering our children and our families such a remarkable, therapeutic and magical experience – and all right on our door step. The world is a richer place for people like you, Trina.  You are making such an enormous difference to lives of so many people.  I can only imagine the blood, sweat and tears that have gone into creating and sustaining Bellamour, and on behalf of so many, I thank you most sincerely and with the deepest of respect.  The world is a better place for having Bellamour in it.

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Some important links:

 

http://bellamour.org/

Bellamour’s web page. Find out how you can donate to or support the work being done at Bellamour.

 

https://www.facebook.com/#!/BellamourEngagingWithAutism

Like Bellamour on Facebook.

 

https://soundcloud.com/#abc-southern-qld/main-voice-track-mp3-file

Link to an interview by David Iliffe (ABC) about Bellamour.

 

https://vimeo.com/89770489

Slideshow about Bellamour by David Iliffe (ABC)

  

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Horace giving Miss Piggy a cuddle!

 

 

 

 

 

 

 

 

 

 

Autism Awareness Day #26

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More random quotes and stories from my two cherubs:  Apologies if there are a few you’ve heard before …

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When Tom was about 18 months old we were parked outside a local Chemist in a small shopping complex. We had popped in to pick up some fruit and veges from the Fruit Mart alongside the Chemist’s shop.  We were both in the car ready to go home when I realised that I had left something in the car boot.  I jumped out of the car and went to the boot to get it out.  As I closed the boot, I heard the sound of the central locking being engaged.  I looked into the car and somehow Tom was out of his car seat and in the front driver’s seat right by the central locking button.  He had never shown me that he could get out of his car seat! I told myself to “just breathe” – that there would be a way to solve this problem!  I quickly realised there was no way to solve the problem at all.  Panic!  I sheepishly went into the Chemist and explained what had happened.  Tom by this stage had discovered the indicators, windscreen wipers and the grand finale … the horn!  It was hideous!  I requested to use the phone in the Chemist. By this time, Tom had assembled a crowd of highly entertained onlookers.  He was having the time of his life!  When I reached RACQ, of course they focused on “baby locked in a car” and within 2-3 minutes there were two RACQ vehicles and two ambulances in attendance with flashing lights and sirens!!! I was so embarrassed! By this time, Tom was watching Fireman Sam in his car seat and he’d helped himself to an apple from the fruit and veges just purchased.  He simply enjoyed the movie whilst everyone moved mountains around him.  Our rescuers thought he was the cutest thing ever and he was treated to a tour of the trucks and the ambulance.  I’m not entirely sure that he learnt anything that day …. 😀

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One morning James and I arrived to AEIOU (Autism Early Intervention Outcomes Unit) some minutes late. He was about 3 years old.  My phone rang.  As I rummaged around in my handbag to locate my phone, James got himself out of his car seat and climbed into the front of the car with me.  He was completely overstimulated and I was trying desperately to finish the phone call so we could get out.  As I was struggling with him and finishing my phone call, he reached up and swung his full body weight off the rear vision mirror.  Almost instantly, the mirror snapped off the glass and the windscreen imploded!  Not happy Jan!

I was rehearsing for an upcoming large Catholic event in the local Cathedral.  There were a large number of us assembling for a choral rehearsal.  Thomas came with me and Chris was to pick him up within 15 or so minutes.  We went for a walk around the Cathedral.  All of his observations were amusing and completely ungodly!  He kept referring to the Cathedral as a Castle on top note.  He made a few interesting comments about one of the sculptures which was of a grieving Mary holding her dead son, Jesus.  You can imagine! We then went down to the rear of the church (to get FAR away from the ear shot of others!)  A previous Bishop is buried under the floor at the rear of the Cathedral.  Tom was asking me what it was all about.  I explained directly and simply.  Chris soon arrived and took Tom home.  When I returned home, I was bathing the boys and noticed that Tom had a large bush tick on him.  The boys had been visiting mum and dad who live on acreage outside of town.  I told Tom that I would have to remove the tick!  He started crying hysterically!  “This tick is going to suck out all my blood.  Get it off, Mum!  If this tick sucks out all my blood, I’ll die.  And if I do die … PLEASE don’t put me under the floor of that castle with that old dead guy!”  Methinks I said too much J

The Lollipop man at the boys’ school spent months last year saying “G’day Tiger!” to Tom, only to have him respond, “I’m not a tiger. I’m Tom!”

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“James, do you know this song?” (*insert my hearty rendition of ‘The Grand old Duke of York’ here*) “Mummy, please stop singing … that’s not a song, it’s a nursery rhyme”. I stand corrected!

“Look Mummy, there’s a cow”. “Yes, James! That cow is eating that lovely green grass for breakfast. What a good cow eating his breakfast!” “Yes Mummy. That cow needs to go home to his mother and get a sticker for being such a good boy!”

When the boys were younger, I purchased a bike trailer so I could pedal them around the local streets as they both loved wheels and the movement.  In honesty, I always favoured the downward hills and the flat stretches … pulling two toddlers behind you on a push bike is pretty hard work – particularly when they’re using the safety flag on the back of the trailer to up-end every empty wheelie bin on the street along the way! Sheesh 😀

Random James quote #2567 – “Tom! Stop that! You’re giving me the CREEKS!”.

In Prep, James insisted that God was called “God, the giver of life!” because his school prayer starts that way! I explained it to him but he continued to mutter “the giver of life” after my “God” every time!!!

Random James quote #1097:  <<insert James dramatically breathing in and out>> Mum – I’m hammocking … I’m hammocking!!!!!  (also known as panicking!)

When James was turning 6, I asked him if he would like to come to the shops with me to choose a present. His response – ” I’ll stay here because the shops are too noisy and I don’t like it! You just send pictures to dad’s phone ok? And then I can choose something. Is that a good idea?”. How’s that for a great strategy?

Random James quote #2456:  I asked James to take the rubbish out for me. His response … “Ohhh! Why do I always get the lousy ops?” {{operations}} Yet another of his appropriately placed Star Wars quotes!

Random James quote #1357: “Quit your whining Cyril” – directed at Tom who was objecting to the long car trip! This is a phrase borrowed from “Blinky Bill”!

Random James quote #1531:  “What would you like to do, Your Highness?” – directed at me!

Random James quote #2121:  Responding “Present Mistress” when his name was called on the morning roll at school.  Another Star Wars reference.

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The boys requested if they could help me with my cooking.  I was preparing lamb shanks and barley soup in the slow cooker.

James: Mum! There’s blood on this!

Mum: Yes James, there is because it’s meat. It’s called lamb shanks.

James: Lamb?

Mum: Yes – lamb!

James: What do you mean, lamb?

Mum: Well, you know when we go to the farm and the Mummy sheep have babies? They are called lambs!

James: ((running shrieking from the room)) TOOOOOOMMMM! Mum is cooking baby lambs in the crockpot. Their legs are being cooked Tom! Mum’s actually cooking baby sheep legs!!!!”

Tom: ((flying into the room indignantly and reproachfully!)) Mum! Why would you DO that?

I guess I may need to accept that James will never eat meat! And now … neither will his brother! Sigh!

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Autism Awareness Day #25

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Some special Thomas moments :

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Tom has been an extremely reluctant writer. He is now in Year 1 and is 6 years old.  Tom has loved school since the beginning.  He loves the stimulation and he loves the kids … he has disliked the handwriting though!  He has struggled with his fine motor skills, his visual perception skills and also with dysgraphia which is a handwriting condition.  In the last few weeks however he’s really started showing an interest in writing which is very exciting … even if the content isn’t perhaps as we might like!  The translation of the above notice on his bedroom door  – “Don’t come in.  I don’t feel like it. If you come in I will punch you.”  I especially like the “I don’t feel like it!” part!!!!  Writing is writing … I’m just happy for him to be writing!

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Another memorable Tom story occurred just recently. Tom has a tendency to push his anger right down and then wreak his revenge at a later time.  Last week he had been in trouble with me for being belligerent.  Some time later I was soaking in the spa bath, minding my own business, when Tom swooped in with his iPad and took a photograph of me in all my spa-loving glory!  I sent admonishing comments his way as he fled in haste.  He returned some moments later to reveal that he had used his “Chatter Kid” app to animate my pictured mouth and had recorded his voice over the top stating, “My name is Mum and I am being very rude to Tom.  Rude, rude, rude!  I am a very mean Mummy!”

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Tom is very much like his father. Tom is our resident Comedian.  He can make a joke out of any situation and has a great sense of fun.  Every morning on the way to school he entertains us with games of “Eye Spy” in which he never follows the rules of the game.  He constantly references toilets and bums – and other such quality topics which of course sends both boys into complete hysterics.

Tom is a great brother. He really understands James and is often the only one who can divert a meltdown.  A silly dance, song or ridiculous antics of some kind always offer a great distraction when James is upset.

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Tom asked me lots of questions about why James gets so sad at school. He understands it and he adores his brother.  So for the last two mornings, Tom has walked James into school.  I observed him actually take James’ hand and then pat his back on the first morning.  Yesterday he simply walked by his side.  This is noteworthy because normally as soon as he’s got his backpack on, Tom just tears off at the speed of light, running up the hill to the playground.  He is such a kind and intuitive little man.

Tom has had his own struggles with OCD/repetitive behaviours, ADHD and anxiety.  He has responded really well to psychology sessions which is just wonderful, and he has also responded beautifully to low levels of ADHD and anxiety medication.  At present he is in a really good place and it’s lovely to see him gaining confidence and enjoying life to the full.

From the beginning, Tom has been such a gift to James and an absolute gift to Chris and I. He is growing into such a beautiful little boy.  Tom is a rogue at heart so I’m sure he will always keep us entertained with his shenanigans but we wouldn’t have it any other way.  In Tom’s words, “I’m just Tom.  This is how Jesus made me!” 

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Autism Awareness Day #24

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I hear story after story from ASD families of strangers approaching them to admonish the behaviour of their child or to criticise their parenting skills.  I find this kind of behaviour baffling and unhelpful to say the least.

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For me, it comes back to the ‘village’ issue.  We are all connected as human beings.  We all have our own stories, our own principles, our own experiences but we all understand and live the human experience – we have that in common.  We should approach one another with that sense of connection and therefore respect.  We can’t go wrong if we approach someone with an accepting and compassionate heart.  And if all else fails think of the old saying, “If you don’t have anything nice to say, don’t say anything at all!”

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I want my boys to grow up in a world where differences are celebrated – differences of opinion, of religion, of race, of appearance, of functioning, of sexuality and of beliefs.  As parents, if we desire this for our children then we have a responsibility to bring about change within ourselves as well.  We all carry our own prejudices and deep seated judgements as a result of our upbringing and life experiences.  It’s time to recognise and accept this in ourselves in order that we might teach our children a different way to live.

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As a parent, I have had more people approach me to admonish my child or my parenting than I have ever had offers of help or words of consolation in trying moments with my kids in public.  Isn’t that tragic?  I really could just write and write on this subject but today (for a change!) I’m going to keep it to the point.

Let’s embrace a world where differences are celebrated.  This is only possible if we recognise, accept and let go of our own prejudices.  Of course we can still have our own standards and principles but at the same time we need to recognise that those of others might be different.  Think what this kind of thinking and living will gift our children and the generations to follow.  We can each make a difference on a daily basis.   “Be the change you want to see in the world” (Mahatma Ghandi).

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