Day 8: Finding Joy
Day 8 and we are at the finish line for our “Walk for Autism”. I had a rare chance to spend time with some of my beautiful friends today, it was so lovely that they had all being reading my posts and this helped open up some new conversations with them about autism. The more conversations we all start having about autism the more inclusive the world will be. And that will be good for all of us.
Today, I would like to look at the positives in a post I’ll call, Finding Joy. Autism, as I‘ve mentioned repeatedly, is a tough gig for all concerned. But in amongst all the complexity and trials there are also moments of sheer joy too. We are so energised by each and every sign of progress and I’d like to share a few of our golden moments with you now.
A moment that will stick with me forever was a time when I stayed in the hospital with George last July. This was his first ever treatment for epilepsy involving a week-long stay at the WCH where he had iv medication for three days. Prior to this, George had many seizures a day and would hurt himself often because he had terrible balance and fell, a lot! His brain activity in the EEG was a mess. The fantastic outcome following this course of treatment was that his EEGs have mostly been excellent since then. That is the academic result though. What we saw was a brand-new child. One night in hospital, Pete and I watched on as George spent about an hour just running up and down the corridor, squealing with delight, no wobbling, no falls. We couldn’t believe our eyes. He had the giggles for days after the treatment, he would just look at us and start laughing. He was so joyful, as if he was able to experience the world for the first time. I cannot put into words how this felt for us after around a year of having no idea what was wrong or how to help him.
Another moment of pure heaven for me was seeing George actually jump on the trampoline for the first time. He was about a year late on this one compared to other kids his age, but the look on his face as he did his awkward little jumps, priceless! There was also a time at child care where the educators told me a beautiful story of a little girl that went over and sat next to George and they held hands on the mat for some time. Hearing this brought a tear to my eye.
We are starting to see progress on the communication front now too. His words come out a little wonky so sometimes it is tricky to work out what he is saying. But the look on his little face when we do get it right, his beautiful beaming smile from ear to ear, knowing that he has been understood, it just melts our hearts.
Life for my sweet little boy is tough and you get a real sense of that when he is falling off to sleep and the words he was looking for during the day finally reach his little mouth. Cognition can be very slow and effortful for people with autism not forgetting the sensory challenges to be faced as well. But looking beyond that, being George’s mum and dad brings us unimaginable happiness. We couldn’t love him any harder than we do. That is why autism is so hard for us. In spite of this, you can find joy with autism, it is harder to find on some days but it’s always there and we will work hard to find as much of it as we can for our dear little boy.
Day 7: Special Needs Parents
Day 7 of our “Walk for Autism” and we are drawing close to the end of our fundraising. Our current total sits at $4626! Thank you all so much for your support! I set our original team target at $1000, with your help we have smashed that!
The insight today I’m going to call “Special Needs Parents”. I remember vividly when I went home from George’s diagnosis, saying to myself over and over again “I am the parent of a special needs child, I am the parent of a special needs child”. It probably sounds silly, but I felt that I had to quickly get used to how that felt because in an instant my future and my family’s future had changed. This was not going to be something you could treat with medicine or that he would grow out of, autism was now a part of our family.
Children with autism have needs that are complex, unique and need careful thought and consideration. This places a great deal of responsibility and strain on the parents of these children and so the “Special Needs Parent” is born.
As a “Special Needs Parent” I cycle through a huge range of deeply intense emotions. I grieve for the life I thought I would have. I suffer as I watch my child struggle to develop and struggle to cope with the sensory world. I feel pain when I see his frustration at not being able to get his message through. I feel stressed when I battle with him to have a bath. I feel conflicted when I put his “ear defenders” on him because I know it will mean he is judged by the ignorant. I am exhausted carrying the huge burden of coordinating all the therapy and medical procedures and the effort needed to make sure he is kept comfortable throughout them. I feel guilty about not being more available for Louis. All these emotions take their toll and I know it is changing who I am. Pete and I are early on in this journey with our sons and there is a long road ahead. I do hope that there will come a day when it will all come more naturally to me and I can spend at least part of each day not thinking about autism. That day is still a long way off I think.
Pete and I might look exactly as we did before but our life is different now, we are different. As the parents of a special needs child (and of a little baby too) the main thing we need now from our friends and family is your understanding and acceptance of us in our new form. If we reply to your messages late or forget altogether, if we can have dinner with you but only if dinner is at 5:30pm, if we leave a party early or can’t make it at all, if we can come to your barbecue but only after George wakes from his sleep or if we just don’t seem to be able to find a way to catch up with you at all, these are the times when we need your support and understanding most.
Pete and I struggle through each day just being George and Louis’s parents. We are so sorry if this means we have dropped the ball on our other relationships. Please be patient with us, enjoy our company when we can spend time with you and know that we are so grateful to our friends and family for their love, support and patience with us. We need these things now more than ever.
Day 6: Expressing a little gratitude
Day 6 of our "Walk for Autism" and most of my 10,000 steps today were clocked up walking the corridors of the Women's and Children's Hospital. To keep George's epilepsy under control he has an iv infusion once a month. As it's a Friday I thought I'd just take this insight as a chance to express a little gratitude. It's said that it takes a village to raise a child and today I'd like to say thanks to a few of those villagers.
Autism is complex and George has many needs, special needs in fact. The team of people supporting George is pretty big (the village is more like a small city) and is made up of an OT, a speech pathologist, a paediatrician, a neurologist, a physio, a nephrologist, an early intervention specialist, child care educators and of course our wonderfully supportive family.
One of the villagers who I'd like to thank though is actually the government. Yep, we are one of the silent families that has no real gripes with the NDIS. NDIS often gets a pretty bad wrap. And that's fair in lots of cases. But we are some of the lucky few getting an amount of money that allows us to give George the therapy he needs without using our life's savings to do it. Yes, it's not quite enough but I'm more than happy to contribute to the cause and its just lucky we are in a position to do that.
The second villagers I want to thank are the amazing nurses at the WCH. These guys just get it. When you are feeling your most vulnerable, your child in pain or sick, they are down in the trenches with you. Today, they even got us a cot for Louis! Can't speak highly enough of them.
Lastly, a huge thank you for your help today Mum! You look after dear Louis so beautifully and always make sure I have enough to eat and a coffee when we spend our day at the hospital. Love you Mum! Happy Friday everyone!
Day 5: The Challenges
Day 5 of our “Walk for Autism” and I thought I might take today as a chance to lift the lid on The Challenges. I want to stress again that this is not about gaining sympathy. Our story is unfortunately quite ordinary. There are families with far greater issues and daily hardships than ours and if after all of this you can show them more of understanding and compassion, well, job done!
Our life is basically made up of hard days and bad days. Everything that needs to be done requires thought, planning, routine and is hard. Food is hard, dressing is hard, giving medicine is hard, changing activities is hard, getting out is hard, sleep is hard. Life feels like one battle after another and there is no end in sight. Well-meaning people often try to offer sympathy by saying “Oh that’s just normal toddler behaviour”. This gives me mixed feelings because on one hand they are trying to make me feel better but on the other hand it invalidates the complexity of the issues we are dealing with. ‘Normal’ toddlers also develop on the ‘normal’ trajectory and so the challenges progress more quickly and yet we need to work through those phases for much, much longer.
There are many reasons why living with autism is complex and difficult but I will only discuss the main two for us. As I’ve mentioned, George has very little language. So much of his frustration comes from this alone. Communication, even non-verbal communication like pointing, is not natural for George. When he cannot get us to understand what he wants he gets frustrated, which again, he can’t express to us with words and so even more frustration builds. The only release he has for this is through physical means.
Sensory processing is also a huge issue for George and many people on the spectrum. Everyone has a delicate balance of needs with regard to each sense, for example George needs a huge amount of body movement and visual stimulation whereas others may need to avoid certain inputs. Examples of this are that a person might vomit at the slight hint of a particular smell or be very sensitive to lights in a room. You may have even witnessed the pinnacle of sensory overload in the form of a ‘meltdown’. A meltdown is a total loss of control due to being completely overwhelmed with sensory input. Be very clear, this is not a tantrum. Tantrums are within a person’s control, they usually stop when the thing that is wanted is given. Meltdowns are beyond a person’s control and seeing my child in meltdown is devastating because I cannot imagine the turmoil he must be feeling.
On the road to, and during a meltdown Pete and I get bitten, hit, kicked, slapped, vomited on and headbutted. Our son is only 2, he is pretty tall for his age but still manageable for us, just. Imagine how this will evolve as he gets older. Carers put up with a lot. Loving people with autism does mean putting yourself in harms way at times. It’s just how it is.
A bad day can be spotted from the moment he wakes up or it can evolve throughout the day. These days are just about getting through, trying to avoid a meltdown and nothing more. Bad days usually see Pete and I take turns at being the strong one. Spare a thought here for single parents. Being hit or bitten naturally causes a ‘fight or flight’ reaction in us too. We are only human. Sometimes we have to walk out of the room to regulate ourselves first before we help George.
Let me be clear, George does not have a nasty bone in his body, he is not an aggressive or violent kid. Far from it. He just has huge difficulty regulating himself and responding to sensory input. Pete and I know this and we know it would be unfair and pointless to “tell him off” or get cross with him. Usually this means we let off steam by getting angry with each other, often about the tiniest and most trivial of things. It’s not fair, on any of us, but dwelling on that changes nothing. Believe me, I have spent much time wallowing in my own self-pity, it didn’t help.
I am sharing all of this very personal stuff with you because, as I said, many others have it like this, or worse. Understanding some of these things will I hope give you more compassion for the child in the supermarket having a meltdown or your workmate, who like my husband, busts their gut at work all day and then comes home to a partner with frayed nerves and a child on the brink of meltdown. Living with autism is full-on, often day and night, but we are doing our best and will continue to do so because it’s our life and our son is more than worthy of our best effort.
Day 4: George
Day 4 of our “Walk for Autism” and another big thank you to those of you out there that are continuing to make donations to our cause. Your generosity has been quite overwhelming. I thought I might take today’s insight as a chance to focus in on the main man; George.
George has autism, severe autism. He got the highest score you can get during his autism assessment. Am I a proud mother? Absolutely! I couldn’t be prouder of that little guy. Autism is just one aspect of my gorgeous George and there are so many other things about him that you would miss if you focused only on that.
I had a lovely person from Autism SA tell me once, each person with autism has their own star at some point on the spectrum but that point can also move depending on the situation – where you are, who you are with, sensory inputs etc etc. Pete and I are so lucky because when George is with us, at home, we get to see him shine his brightest.
George has a wicked sense of humour and loves to laugh. A favourite game, especially with his big brothers, is peek-a-boo under a blanket. But be warned, once you start be committed to playing for a good, long while. Our George is like the Energizer Bunny. He is constantly on the move, constantly climbing, constantly finding new ways to flirt with danger. He is a real sensory seeker when it comes to visuals, so he loves TV and he loves, loves, loves his tablet. We let him use a tablet a lot more than I thought I would back when I had hypothetical children. When George is on that thing he is in a world where he is in control and can be independent and he can sit still for, well, as long as he has it. I try to save it for times when he needs to chill out or during appointments like his EEG yesterday but it’s a great tool and provided we control its use, I am not ashamed to admit we use it, a lot.
George loves music, dancing and reading books. He will read a book over and over until the pages fall apart in your hands. He is basically still non-verbal, but when you read his favourite books to him or sing his favourite songs and leave a word out, he can fill in the correct word (or at least a sound very close to it). These are signs to us that there is so much going on in that little mind of his, we just need to be patient for the language to catch up. Occasionally he will slip out a word with perfect pronunciation and Pete and I look at each other with tears of joy. The word may never be uttered again but the hope that those small victories bring to us will sustain us until the day comes that the words just flow.
Most special to me are the mornings when George climbs into our bed and we get to enjoy a few quiet moments of cuddly time together. As his Mum, I can only watch on, holding his hand, as he endures the many interventions and challenges that will continue throughout his life. He puts up with so much and is such a happy, sweet child in spite of it all. George inspires us everyday and we are so proud of him. Yes, we need to be patient, waiting for his development to proceed in its own time, but Pete and I will cherish and delight in each tiny milestone because we know just how much energy and effort was needed to produce it.
Day 3: Buddy Conditions
Day 3 of our “Walk for Autism” and as it’s a Tuesday my dear Mum is here to hang out with me. Today is also an EEG day which leads me into my next insight; “Buddy Conditions”.
Autism is one of those disorders that commonly occurs alongside others. For no particular reason today I will call these “Buddy Conditions”. At George’s diagnosis the paediatrician on the panel rattled off a list of other issues we could potentially see crop up throughout his life. Commonly co-occurring conditions include ADHD, anxiety, sleep disorders (tick), intellectual disability and epilepsy. George is unlucky enough to be one of the 1 in 4 children that has the autism-epilepsy double and today we went in to the Women’s and Children’s Hospital for our regular visit to see how things are going via an EEG test.
George’s seizures, when untreated, would see him have episodes much like we all experience when we are falling off to sleep and you have a sudden jerk. At their worst he would stand in one place, usually our kitchen and would have a series of these very short seizures, one after another, sometimes falling over, sometimes not, after which he would curl up in my lap and fall asleep. This could happen up to 6 times per day. Very scary! It did take us some time and a second opinion to get a grip on what was going on. Thankfully we now have a fantastic neurologist and since his first treatment we’ve not seen a single seizure. Yipee!
The challenges offered by autism are therefore not usually the whole picture. People with autism have all sorts of other things to deal with. As an example, the developmental delay, caused by autism and exaggerated by factors like poor sleep can lead to a person having an intellectual disability. As a parent of a 2 year old this is pretty hard stuff to take. Not one therapist or doctor is willing to even have a guess as to what the future might look like for our child. Yes, there are examples of famous people like Albert Einstein or Bill Gates who have autism but clearly there are many other outcomes that are also possible. All we can do as parents is find the best set of therapists and doctors and go hard at it to drive the outcome to the tip of its potential. And come what may.
The moral of the story today is that people on the spectrum and their families have it tough. There are all sorts of behavioural and sensory challenges brought about by being autistic and in the face of this people also have to deal with the medical issues or other “Buddy Conditions”, like we did today with George having an EEG. Imagine a child with autism, perhaps non-verbal and having sensory issues with being touched, having electrodes glued all over their head and then being required to sit quietly for 15 minutes. Sound impossible? Luckily for me George is ok with touch and can be kept happy with a packet of Twisties and an iPad. But some parents and people with autism are getting seemingly impossible tasks done day in and day out. So tonight, on World Autism Awareness Day, why not take a minute to acknowledge these amazing people and raise a glass to those families living with autism and whatever other cards they were dealt!
Day 2: The Diagnosis
Thank you so much to those of you who have made donations! We have now exceeded our target of $4000! Amazing!!
Day 2 of our “Walk for Autism” and today, I am joined at home by Pete’s wonderful parents, Vic and Anne (aka Gran and Pops). The journey as the parent of an autistic child is an emotional one but it is also emotional for close family members like these guys too. We are all in it together and thank God for that!
Today, the insight I’d like to share is around The Diagnosis. For us it took around a year to go from a few worrying observations at home to a diagnosis. And George is one of the lucky ones!
I remember going in to sit down to hear the result of our assessment. Pete and I had read and observed enough to know what was coming and yet the news was still devastating. I still ask myself, why was that my reaction? I mean, between walking in and leaving nothing really changed. He was the same beautiful boy, he wasn’t sick or dying or anything even close to that. He thinks differently and behaves differently, so what? Well the trouble is, being different is hard. And this label was now stuck with us, forever.
As a parent, we all just want our children to grow up and be able to choose a life for themselves and to have a smooth passage through that life. Autism is going to be far from a smooth passage through life for George. It is difficult for people to understand him and connect with him and lots of people are going to judge him. That makes me feel sad.
I understand my son, pretty well I think, but that has taken a lot of really hard work and learning, and I am highly motivated to do whatever is required. Pete too. But, and it’s a big but, there are not all that many people in the world also willing and able to do that for him.
So you may be wondering, what can I do to be more inclusive? Start by trying to understand the world from an autistic person’s point of view. The next time you see someone behaving in a way you wouldn’t expect, ask yourself “Why are they doing that?” The answer is not “because they are autistic”. Autistic people, just as all of us, have a purpose with everything they do. There is some motivation or goal or something interesting to them about whatever it is they are doing, even if it is licking play equipment or making ‘weird’ noises. Challenge yourself to try to think autistic. It’s not very easy, but then again, it’s not that easy for an autistic person to try to “look normal” but they must try to do that all day everyday so it wouldn’t hurt for us to put in a little effort too.
Day 1: Sleep
Day 1 of our "Walk for Autism" and we have hit the ground running (so to speak!) joined by the Huff crew on a beautiful morning walk down at Henley Beach!
So the first insight I'd like to share with everyone is on the big topic of Sleep. The thorn in the side of all parents, period. Everyone, kids or not, can identify with the negative effects of a lack of sleep. Everything is hard when you're sleep deprived.
Well, when it comes to autism sleep is a common problem that exaggerates all the other challenges. Up to 80% of kids on the spectrum have major chronic sleep problems - whether it is trouble falling asleep or staying asleep or both.
For our family we are in the 'both' column. At its worst, Pete or I would spend hours each night lying with our kicking, wriggling toddler while he fell asleep only for him to wake up and stay wide awake for about 3 hours during the night. Many parents with kids on the spectrum would tell a similar story. This went on for many months for us, little Louis was born during this time as well and Pete and I were starting to unravel.
Solutions to this madness came in the form of a melatonin supplement - people with autism often don't produce enough - and some help from our wonderful occupational therapist. This improved the falling asleep part but the night wakings still continued. One night was so bad that after 4.5 hours I gave up trying to get George back to sleep. That was the night I fell with a thud from my moral high ground and asked the doctor for a prescription.
There is a very unhelpful negative stigma around using medicine for your child to sleep. Yes, it isn't going to be your first choice but in the right situation it might be a good option. For me, watching my son fail to thrive, it felt like our only option.
The turnaround in George was amazing. His speech finally started to develop once he began getting better sleep, he is far less accident prone, his coordination has improved and we as parents have much more in the tank to have the patience and energy to care for our kids. You will have a hard time arguing with me that we have made the wrong choice on this.
George still wakes at least once or twice every night, usually for 30 to 60mins at a time. The medicine is not a sedative and it isn't magic. It just helps George fall back to sleep. We are still not getting quite enough sleep, but it is a BIG improvement and that's a win for now!
Walk for Autism starts tomorrow!
"Walk for Autism" starts tomorrow! Thanks so much to those of you who have donated - Pete and I are so grateful! With your help we have raised nearly $4000! Thank you so much!!
Through the coming week I plan to share some pictures of us walking as well as some personal insights for those of you who would like to understand some of our challenges a little better.
As a mum, I want to be as open as possible about what is going on in our family. If feel no shame or embarrassment or need to hide anything. Autism is a (major) part of our life and will likely shape George's life. I want my son to grow up feeling confident and comfortable in his own skin, just as all parents do. I'm not writing about any of this for pity, attention or sympathy. I'm doing it because I want to set the best example I can for my son, who in my eyes is perfection.
How can you help? Talk about autism, freely, there is no need to whisper the word or talk around it. Ask questions, try to understand the person in your life with autism, each individual person has their own interests and these are the key to connecting with them.
If you are Autismed-out, fair enough! Scroll on by! But if you choose to read my posts, thank you so much for taking the time to let a mum tell her story.
I'm walking for....
I’ve stepped up to Walk for autism to help create a world where no-one on the autism spectrum is left behind.
I’ll be challenging myself to walk 10,000 steps a day for 8 days while raising much needed funds to support people on the autism spectrum.
An estimated 1 in every 70 people is on the spectrum. Along with their family members, this means autism is a part of daily life for over a million Australians.
People on the spectrum see, hear, feel and experience the world differently. For many, simply coping with the everyday can lead to confusion, anxiety and isolation.
By coming together and taking action, we can help provide opportunities for people on the autism spectrum to participate, engage and thrive in the world around them.
Help make my steps count and show your support by donating today!
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Fundraising Goal Reached
Walked 10,000 Steps
Walked 40,000 Steps
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Thank you to my Sponsors
Daniel Thorpe & Susan Baker
Julia, Mark, Hollie & Jack Ravenscroft
Colm And Nat Walsh
Emma & Clinton Tiller
Cheryl And Bob Huff
Sarah Choat & Lachlan Parker
Hills Psychology Centre
Joanne Ravenscroft & Lorenzo D'orsi
Kim And Jeremy And Henry Lehmann
The Mayne Clan