Special Needs Parents Don't Get Ice-cream

Over the summer break, we went away with friends to a caravan park. 

One afternoon, everyone decided it would be fun to take the kids for a walk down the main street to get an ice-cream.

I love ice-cream. But I couldn't go.

Firstly, Emma doesn't have the physical stamina to walk long distances and she is getting so darn big that it's impossible for me to carry her when she gets tired.

Secondly, it's not safe for Emma to be so close to a main road as she has no awareness of danger. It's especially dangerous in a large group where I know I'm likely to get distracted and it only takes a second for her to escape and run for the road.

Thirdly, we can't take Emma to the shops as, like the eternal toddler she is, runs around impulsively grabbing everything and then has a meltdown when denied what she wants which could be anything from a lolly to the EFTPOS machine.  I'm not overly concerned by the judgement that a 7 year-old writhing on the floor attracts; but I AM concerned about her breaking or damaging something that belongs to someone else.

Lastly, Emma still needs to be spoon fed certain foods and ice-cream is one of those. Most people don't know this as it seems to attract the most disapproval from others, particularly other children, so we never do this publicly. Spoon feeding and nappy changing are 2 things we keep private to try and maintain some dignity for Emma.

I watched everyone walk away and realised I was quite literally alone.

I wanted an ice-cream.

I looked at Emma sitting on the camping chair; she was blissfully unaware that she was missing out. Thank God for that, I thought. 

I reassured myself, "It's okay. It's just an ice-cream"......

But it wasn't just an ice-cream. It was a 'cold' (pun intended) reminder of the isolation that special needs families face, not because we're rejected or lack support, but simply because we can't do what other families do so easily. 

We get left behind: literally and figuratively.

We knew that by attempting this camping trip that it would be a struggle with Emma and we knew it would mean being confined to the caravan park.

It was a dark reminder that as life moves forward for everyone else; time is standing still for us. 

As people move forward and celebrate their children's achievements, we are still stuck at home with the 'baby' enduring sleepless nights, nappy changes and tantrums but without the redeeming 'cuteness' or hope that the stage will pass. 

While most families can enjoy activities together,  our family has no choice but to be constantly split in two with one parent left behind with Emma. 

It was at this moment, one of my friends who I assumed had left, appeared and said that she'd decided to stay with me. I literally breathed a sigh of relief. Her gesture felt like healing ointment on my aching heart. 

I admitted I was trying really hard not to feel sorry for myself. She suggested we walk a few metres over to the camp kiosk and get an ice-cream.

When we got there, I noticed the freezer had Ben&Jerry's which is actually my favourite ice-cream.

Suddenly, I had a profound thought which I believe was God speaking to me.

 "See, you didn't miss out on an ice-cream. It's just different"..........

I became teary with a sense of joy and thankfulness that I hadn't missed out; my father God was with me and had simply provided a 'different' ice-cream. It wasn't the one I wanted and it was different to the one everyone else got - but it was a pretty awesome ice-cream that I loved. 

Finding the joy and hope in 'different'

If, as special needs families, we focus too much on what we miss out on we will live in a perpetual state of resentment towards our child. Feelings of loneliness and isolation will threaten to blind us from seeing the joy in front of us. 

We must learn to 'tune in' to the goodness in our experience (and others) rather than just 'tuning out' the judgement, rejection and loneliness.

It's a subtle difference but has a profound impact on how we feel. 

If we simply 'tune out' the hurt, we go into survival mode: where we find ourselves in a constant state of putting out spot fires which can be exhausting (mentally). Alternatively, we can learn to 'tune in' to the goodness, hope and joy in our experience, and move from simply surviving to thriving. Joy is strong and powerful and blankets (covers) the ever-present spot fires of our experience.

In this way, we are free not just to accept, but enjoy the ice-cream we've been given!  

Whenever I feel my thoughts descending, I stop and find something to be thankful for. 💗

If I feel lonely in my experience, I remind myself of all the other mum's out there walking the same road.....

If I'm upset because someone has been unkind, I try and bring to memory a time when someone was kind and my heart was warmed.....

When I feel like all my strength is gone, I remind myself of how God has always renewed my strength when I've been drained....

When I find myself saying, "I can't do this", I remember how many millions of times I've said that and yet I've just kept on doing it....

And, I will keep on doing it.  So will you. 

Because whether our ice-cream is the standard variety, gourmet, a Bubble O'Bill, soy flavour or vegan.....

....it's still awesome - it's just different. 

Emma's Progress - 6 months on..........

When we began Emma's NACD neurodevelopmental program in July, I planned to blog once a month. Little did I know that with the demands of the program I would struggle find time to eat let alone sit down at the computer to write. 

So...better late than never! 

Emma is making progress but admittedly, at a slower pace than I would like. But I am also (slowly) learning to celebrate the 'little things' and find joy even in the darkest moments.

There is so much more to this 'program' than the work and learning. I feel like everyday I go into battle for Emma. It's not easy. It's not always fun. But the hope that we will 'win' this battle is what keeps us moving forward. 

Emma's Progress

Significant improvements in muscle tone 

Since beginning the deep pressure and movement exercises as part of her program Emma is no longer floppy AT ALL and noticeably stronger. 

Significant improvements in motor planning / coordination / balance

Emma used to fall over constantly. She would walk into things, trip over things but not anymore! She now has good body awareness and is significantly more confident with climbing, playing on the playground and can now carry things without toppling over. She has started trying to stand on one leg and often tries to imitate dance moves she sees when watching music videos. 

Just this week she jumped for the first time (using 2 feet) on the trampoline! 

Improvements in receptive language

After feeling like she was never going to get it, Emma has begun processing 2 pieces of information. She is also able to recognize over 100 flashcards whereas before we started the program I was unsure of how many pictures / objects she recognized if any.

Improvements in auditory processing

We are finding Emma is responding more consistently to requests and is processing information quicker.

She hears everything without her hearing aids and often tells me if she 'hears' something by looking at me and putting her hands near her ears. This morning as we did our running she did this when she heard a dog bark in the distance. 6 months ago she wouldn't have been as 'tuned' in to hear the sounds around her.

Improvements in social Skills 

After starting the GAPS diet in October we began noticing improvements in her social skills particularly her ability to interact with other kids. Adults are mostly kind and patient but generally young kids are not so it is very difficult for a child like Emma to engage in meaningful interactions with other kids. But now she is initiating social interactions and is able to 'maintain' interaction for a short period of time. She used to engage for 10 seconds and then wander off on her own but we are now noticing she is identifying kids her own age, approaching them and engaging happily in parallel play with the odd moment of co-operative play. 

We also recently saw our first glimpse of 'compassion' where she realised she'd (accidentally) hurt another child and cried along with the hurt child before putting her arm around him as if to say 'sorry'. Gold. 

All of these areas still need work but we celebrate her progress! 

How I manage the program.....

It only took me about 2 days to realise I couldn't do this program on my own.

We now have 3 amazing volunteers who come weekly to help with Emma in various ways depending on their experience and expertise. Their willingness to give of their time to help our family is actually what gives me strength on those dark days. These volunteers help remind me that even when the world seems harsh and unfair there is still goodness.

I admit we still struggle to get all the 'program' done 7 days a week. We are finding that as Emma moves through stages in her development she is becoming more like a 'toddler' and less like a 'baby'. This means meltdowns, tantrums and defiance and boy, is that girl stubborn. There are some days where it takes more like 3 hours to get program done.

We are praying that 2017 will be a year of continued growth and development for Emma but feel we need a miracle when it comes to her speech. So friends, I ask you to join us as a family in praying that our precious girl will find her voice in 2017 and we will be sure to give God the glory for his power at work in Emma's life.

Thank you from the bottom of my heart all for your kind words, prayers and encouragement in 2016. I am truly thankful. 

Happy New Year everyone! xo 

Tips For Success With Alternative Treatments

Last weekend this informative piece appeared in our newspaper. The title "Charlatans target NDIS" with the subheading "Parents of autistic kids warned of bogus treatments". It then lists the treatments parents should be warned of and why.

Firstly, the only treatment on there that provides services to NDIS clients is osteopathy. These practitioners are hardly 'targeting' the NDIS - they aren't even part of the scheme.

Secondly, the article says that these therapies claim to 'cure autism'. I'm not aware of these therapies claiming to cure anything. Australian consumer law states it is illegal to make false or misleading claims about a product / service so you can't claim to cure anything - even doctors can't! These therapies are treatments that address autism and related disorders. None of them are a cure in and of themselves. And really, if you think one chiropractic adjustment is going to cure autism then you probably haven't done enough research. 

Autism and related disorders are multi factorial - meaning there are lots of things going wrong in the brain and body. There are multiple areas to addressed - this is the  reason why alternative therapies are also called "complimentary" therapies - they compliment each other to address the many different factors involved in disease.

Tips for success with alternative therapies

• Educate yourself. 

Do your research. Read books, journals, medical journals, join online forums...you'll find some alternative therapies have a larger evidence base then others. We have avoided homeopathy for that reason but I know many families who sware by it. It's an individual thing.

• Trust Yourself

As you educate yourself - trust yourself! Trust in the knowledge you have acquired. This trust is very important as your inevitably encounter opposition.

One of Emma's specialist literally LOL'd when I said we would be researching alternative therapies. This was after he told me there was nothing he could do for Emma and that I should just focus on my healthy children. He was basically saying the better option to 'alternative therapies' was to just give up. I felt sad thinking about how many parents would give up fighting at that point. 

• Trial and error

Not all therapies will work for your child because each child is different with a completely different genetic profile. 

Contrary to some beliefs alternative medicine is not harmful. You are a thousand times more likely to die from a reaction to a pharmaceutical drug than a natural supplement. It's insanity to suggest a gluten free or dairy free diet is dangerous compared to taking a drug that has has been inadequately tested.

It can take time and patience to find what works for your child. Some things work - some things don't. This is part of the journey.

• Find out about others experiences

I know a mother with a nonverbal child with autism prone to violent outbursts and not sleeping. Another parent suggested an essential oil. She laughed it off. A year later after trying all sorts of drugs she was so desperate she gave in. On the first day he had noticeably less tantrums and started sleeping through the night. She admitted she had no idea how it worked...but she was just so thankful it did!

As parents, we learn about parenting from discussing and sharing our experiences with other parents. There's no harm in having conversations and finding out about what other parents are having success with as long as we understand that with any parenting advice, it may not work for our child.

A great source of information is the recovering kids biomedical healing facebook page. It has over 85,000 members from all around the world and is a great community of like-minded parents!

Lastly, it's not popular to choose an alternative path.  'Mainstream' means going with the flow, following the majority and believing what is widely accepted as true. Going against the flow means asking questions, challenging the status quo and considering the motives and agendas behind much of 'mainstream' thinking.

Going against the flow isn't easy but we know it's the right thing.

Be encouraged xo