Dear Emma. It's not you. It's me.

This is a significant post for me.

Emma is 5 years old today and this is the first year we have actually celebrated her birthday.

Birthdays have always triggered intense grief for me. What is there to celebrate when faced with the harsh reality that it's been another year of missed milestones, another year watching your child struggle through life and another year missing out on all the experiences that 'normal mums' with 'normal daughters' get to enjoy. 

Once a year at birthday time I allowed those waves of grief to all but crush me. If I briefly allowed a memory of her birth to flood back it was quickly dismissed as too painful to consider.  If only I had known as I held that precious newborn in my arms that all the hopes and dreams I had would be destroyed a few months later.  If only I'd known the happiness and joy I anticipated her life would bring to the world would be replaced with worry, fear and the feeling of carrying a burden far too heavy. 

Those feelings started late last year as I began to dread this upcoming birthday because we had always hoped and prayed she would be 'normal' by 5.  I survived those first few months following diagnosis by telling myself that all I had to do was get to age 5 and then everything would be okay. 

And then just like that - she turns 5. 

But.... then something happened. Something significant.

As I wallowed in self-pity allowing my thoughts to descend to dark places, I had the sudden realisation that this was not about Emma. 

This was about me. 

I didn't need to grieve for what was LOST because I could instead choose to celebrate what we had FOUND in Emma.

I needed to take the focus off her and place it on my attitude. Emma didn't choose to be disabled to make my life difficult. She can't control this anymore than I can. The only thing I can control right now is my response. 

This bible verse sprung to mind.

"Shout for joy, o barren woman, she who has not given birth; Break forth into song and rejoice she who has not gone into labor..." Isaiah 54:1 

What on earth does that even mean? 

It means that joy should not be limited to our circumstances. It also means that we can choose thankfulness and joy even when we 'can't see' what it to come. The barren woman in this scripture chose to praise and thank God even though she was 'barren' and as she lifted her heartfelt praise to her creator - something shifted within her and it released God's promise and she was blessed with more children than she could have imagined. 

I began to thank God for Emma. I thank you that she is beautiful. I thank you that you have entrusted her to me. I thank you for her smile. I thank you that she loves to sing. I thank you that she laughs at her own jokes (like me). I thank you that are bringing healing to her each and everyday. 

And I thank you that you carry the burden so I don't have to. 

As I did this - something shifted within me.

Suddenly the lense through which I saw her changed colour and I saw JOY.  

So this year, instead of grieving for what ISN'T  I'm choosing to celebrate what IS.

Emma is a life worth celebrating. A gift - to me.


Let's sing for joy! 

Why We Chose the GAPS diet....

From the very beginning I knew that diet and nutrition were crucial in addressing Emma's issues. 

But which diet?

We were advised by our integrative doctor initially to remove gluten and dairy until we figured out exactly what she needed. We saw changes immediately. She was more alert and had noticeably less absence seizures. We knew we were on the right track.

There are lots of things we don't know about what has caused Emma's issues. But one thing we did know was that her mitochondria weren't functioning well. We put her on a protocol of supplements to specifically support mitochondria and saw good progress in her muscle tone and energy levels.

The current (non-mainstream) recommendation for kids with mito issues is a diet low in oxolates. We tried this for 6 months with no changes that I could attribute to the diet. She continued to be bloated after every meal and alternated constipation with horrendous explosive poo. It was clear that we were missing something. I also felt 'awkward' about the low ox diet as it had very little nutrition as foods high in oxolates like fruit and veg are also high in antioxidants which are also important in recovery.

I understood the basic principles of the microbiome but had never actually read the GAPS book.

                                                        

I'm someone who need to understand the 'why' before I jump in. If I was going to attempt a diet as restrictive and time intensive as GAPS I needed to understand the science behind it.

The basic science

Your immune system is in your gut.  Your gut and brain are connected. 

If your gut health is poor then your health is unlikely to be optimal. 

Diet and lifestyle factors have a direct influence on the good or bad bacteria in your gut. Eat bad food then you end up with more bad bacteria than good. Eat good foods particularly foods with live bacteria (e.g probiotics, fermented foods) then you feed the good guys. 

More good bacteria equals a healthy gut and a healthy gut equals a healthy brain. 

I knew Emma had lots of inflammation in her body which included in her brain. Science has always believed that the brain was incapable of being 'inflamed'....turns out they just discovered they were wrong. This diet reduces inflammation in the body by healing the gut.

WARNING - This diet is hard work. 

I only attempted it because I have my best buddy (my thermomix) to help me out. It requires LOTS of cooking and food preparation and organisation (not my strong suit). 

BUT.....It has been sooo worth it!

Why?

After the initial detox which was horrendous we noticed improvements in Emma's social skills. She became more aware of other kids and started finding ways (without words) to interact with them. This was exciting - an obvious change. 

It has also helped my other kids by beginning to heal their leaky guts. How do I know? Because after years of being the same weight they have stacked on the kilo's in just 8 weeks! We have also not had one tummy ache since starting the diet and kids just seem happier. 

I've been doing it too - and it feels awesome. 

In my humble opinion, if you haven't experienced success with other 'diets' then GAPS is one worth exploring for your family especially if there are special needs or health issues.

Although I believe a holistic approach is best in recovering special kids I've seen firsthand that diet is crucial in working towards healing. 

Be encouraged xo 

4 weeks on - Celebrating each little step forward

This week we went to the park. 

I watched Emma run and explore and felt like I was looking at a new child. 

Tears sprung to my eyes as I experienced a deep sense of joy and thankfulness.

We are 4 weeks into our NACD neuroplasticity program.

The program takes 3 hours daily to complete and should be completed 7 days a week. I can only manage 6 days and some days struggle to get the full 3 hours done. We are managing about 80% of the total program with the goal of getting to 100% next month. 

She has a long way to go but the changes are remarkable. 

Her muscle tone and strength are noticeably improving and she is more aware of her body thanks to the frequent deep pressure input. She is running faster and moving without as much hesitation. I also noticed her hands are hanging lower when she walks as opposed to her 'dinosaur arms'.

Amazingly she has gained 3kg with no changes to diet / exercise.  At first I was concerned until I realised that it's because her (low tone) jelly fish arms and legs are gaining muscle! 

There's a brightness in her eyes. 

She is starting to notice everything.  She responded to plane flying overhead, the sound of the train in the distance, a bird sitting on a branch and distant dog barking (all without her hearing aids). At one stage she took my hand and led me to a tree to show me and then pointed upwards like she was explaining to me that it was really tall.

This kid is excited about life and the world around her.

We've seen positive changes in her listening and responding (auditory processing) particularly her ability to imitate sounds and words. She has surprised us with lots of new words at random times like "Aunty Trace" and "Roof". They don't always 'stick' but we celebrate each new sound or word as she gets one step closer to normal speech. 

Other changes we've initiated as well as the program have been increasing her dose of fish oil and making sure she has at least one hour a day of active play outside. We have also taken youtube off her ipad so she is only able to watch 'therapeutic' (homemade) videos which are designed to help feed her more language, useful directions and self-help skills. It's all about intensity - we are using every opportunity to help her learn and develop.

Emma has now adjusted to the new routine and knows what to expect during 'learning time' but we are dealing with some mammoth tantrums and defiant behavior which we were told to expect as she begins to make steps developmentally. 

We are celebrating every little achievement however small as it brings us one step closer to our destination. 

The journey is hard - but we're moving in the right direction.

Be encouraged xo 

Amazed and Exhausted - A New Beginning

We have completed our first official week of our NACD neuroplasticity program. 

This marks not just the beginning of a new therapy method for Emma but a huge leap of faith for our family. 

Are we crazy taking on full responsibility for Emma's development? Is it going to'fix'Emma? What if it doesn't? How on earth are we going to manage such an intensive program with all our other commitments? Can I actually do this? 

So......How was our first week? Amazing....and exhausting.

The amazing bit....

It was amazing watching Emma learn new skills almost instantly. Within 3 days she had mastered most of her receptive language tasks. I discovered she understands a lot more than I realise and when focused and engaged is capable of absorbing lots of new information.

It was also amazing because I finally feel like we've found something that is going to deliver results. I'm feeling amazingly positive!

But I'm also amazingly exhausted......

The exhausting bit....

It was exhausting because her 2 hour program actually takes 3 hours daily to complete. I started getting up an hour earlier (which is like torture for me) and then had to wrestle a strong-willed 4 year old who didn't want to do her 'learning'. 

I seem to have met my match in the stubborn department. 

After the first 3 days all I could think was...HELP!!!!!

I knew this was going to be a challenge. It means a change of routine and structure for our family. It requires a huge commitment from me which I need to  juggle with my other commitments. 

But...... I embrace this challenge motivated only by deep love and devotion to this child that God has entrusted to me.

I wouldn't desire this without love. I couldn't do this without love. 

I can't do this without God.   

I'm being honest and admitting I'm exhausted.

I'm certain it will get easier as we all adjust to a new routine and new way of life.

"Never despise the day of small beginnings.......for the Lord rejoices to see the work begin" 

Zechariah 4:10

Be encouraged 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 

Why as a Christian I can't accept disability

One thing I've wrestled with is how I accept Emma's disability while still believing and hoping for an outcome that goes above and beyond what medical doctors consider 'possible'.

The truth is I can't accept Emma's disability.

I love and accept my daughter but I do not love or accept the disability that limits her.

Why? Because God doesn't love or accept her disability either.

How could I believe in a loving, gracious God and also believe he is responsible for pain, suffering and disability? I believe that God is exactly who he says he is in his word (the bible). He is good. He is loving. He is kind. He is faithful. He is sovereign, all-powerful and has overcome the world. He has the power to bring change, to heal and work all circumstances for good. But just because he can bring good things out of disability (and all of life's challenges) it doesn't mean he loves and accepts disability in the same way he loves us as sinners but doesn't love or accept our sin. 

It's not who he is. He is perfect. He is good. 

There are times when I feel sorry for myself, get angry at God and imagine the worst possible outcome which is her lifelong dependence on me. Each time I've allowed those negative thoughts to escalate I've become exhausted and discouraged. If I accepted her disability it would mean staying in that place. I don't like it there. It's scary and lonely and well, hopeless. 

"Hope deferred makes the heart sick, but a longing fulfilled is a tree of life" - Proverbs 13:12

If we accept disability we accept defeat. How can we fight for our child if we're already defeated?

The bible says "We are more than conquerors...".

A wise person said to me once that every prayer and every therapy is a fight for Emma. Her encouragement was to keep fighting and never give up. We fight because there is hope! 

We can't always choose our circumstances but we can always choose our response.

I choose not to accept defeat and give up. I choose to fight.

I  choose to be positive everyday - even the days when I feel like my heart might break.

I choose to trust God believing that "his ways are higher than my ways".

I choose not to allow negative thoughts and bitterness to consume me because if I give them a foothold they will. I have to take those thoughts captive and replace them with promises from God's word.

I choose to hope against hope that one day my daughter will live a full life.

Having said all that, I do accept one thing - I accept where we are at today but I continue to hope and pray for a better future. 

Be encouraged xo

The Missing Piece of the Puzzle For Kids with Special Needs - Neuroplasticity Therapy

Let's be honest. In the world of disability we're all feeling our way around in the dark.
There's no quick fix - no magic bullet. Many of us have been told that the best we can do for kids is to manage 'symptoms' with therapies and medications. 
But what if we could address the cause?

But isn't the cause genetics?

Genetics is complicated - even a geneticist will tell you that they understand a limited amount. When a doctor says "It's genetic..." we often assume that means "Badluck. You can't do anything about it" but that's simply not true.

Two of my boys have a lazy right eye which is apparently genetic. So what do we do? Firstly, they wear glasses to help the symptom of poor vision . But we actually want to treat the 'cause' of the poor vision so we patch the left eye and they do eye exercises (which are actually brain exercises) to stimulate parts of the brain responsible for the lazy eye. Their vision is steadily improving and in time, the brain will correct itself and the eye will work normally. This is neuroplasticity at work.

A genetic disorder does not define the potential of our children. We can't allow anyone to speak limitations over them. We need to believe the 'potential' is there for restoration and healing if we are to see growth and development. 

If we don't believe the potential is there then we begin the fight for our special needs child already defeated. 

As parents we already know our children's challenges but we are well within our right to hope for an outcome that goes "above and beyond what we can ask for or imagine".

I read so many articles detailing factors involved in Emma's disability that I thought MY brain might explode. At one point I wondered if understanding Emma was quite simple: Her brain doesn't work. 

The simple thought "Her brain doesn't work" lead me to information about neuroplasticity.

Neuroplasticity is the brain's ability to change both its physical structure and functional organisation in response to changes and experiences. When new connections start being made they fundamentally change the brains capacity to learn and function.

So when we talk about potential we are being literal. The brain DOES have the potential to change and work 'better' with the right input.

Where to start? Feed the brain - the right food and the right supportive supplements. If the brain has the nutrition it needs to function then that's a good place to start.

Secondly, explore the options when it comes to neuroplasticity methods and neurodevelopmental programs. We have chosen NACD but there are other options out there that offer hope for families. 


Be encouraged xo 

How Kids Benefit From Having a Sibling With Special Needs

A child with special needs brings a unique challenge to any family dynamic.

It's easy as parents to worry about how much siblings miss out and fear they may grow to resent their special sibling (and possibly us parents too!).

However, many of these worries are unfounded as I see in my family just how much my kids are learning and growing from the whole experience.

Special needs brings families together

We're a family. We're a team.

I don't shelter my kids from what is happening. They are included in our appointments. They see me cry. They participate in therapy sessions. I answer all their questions and we pray for Emma together. This openness and transparency has really helped them embrace the challenge rather than provoke anxiety because they don't understand what is happening. It also reduces opportunities for resentment because they feel included.

When siblings are included in the recovery process they are more likely to embrace the journey rather than resent it. 

Kids develop compassion when they have a sibling with special needs

Although not easy, having a sibling with special needs is part of the story that shapes who they are.

My 8 year old told me recently he wants to become an engineer and design an indoor playcafe for kids in wheelchairs. This was the point where I realised how much my kids are learning from this journey and how this is shaping who they are in a good way!

Siblings develop compassion which translates into a desire to help others.

My boys are brilliant little therapists. Each one of my boys will at different times cuddle up with Emma on the couch and read her a book, sing to her or take her into the room to do 'therapy'. They put her on the swing and correct her gently when she hits or throws something. They encourage her to speak and have more patience than I do.

Kids develop resilience when they have a sibling with special needs

Siblings are forced to develop resilience as they learn the world isn't a perfect place and develop ways of coping.

This maturity and resilience will help them deal with the challenges that inevitably arise in life.

Siblings learn how to be kind, selfless and put others first

Our consumer culture tells us we should always think about ourselves, find our inner peace, make ourselves happy etc...The bible tells us that true 'inner peace' comes from knowing Jesus and living a life of service to others. Thinking of ourselves LESS is actually better for us.

Dr Caroline Leaf details in her book "Switch on your brain" how helping others actually makes us smarter and supports brain development.

Siblings learn the hard way that sometimes we need to put others first.

This is not a bad thing. Kids these days are incredibly entitled and spoilt (mine are no exception) and it's a challenge to counteract this culture. Having a sibling with special needs forces kids to focus less on themselves and helps develop their character.

Having a sibling with special needs obviously has its challenges but seeing as it's beyond our control we can make a choice to focus on the positive to see how God really can work "all things together for good".

Be encouraged! xo

Introducing Recovering Emma

Our heart is to see our daughter with special needs reach her full potential.  

We want to see her live a life not limited by her diagnosis but in the fullness of all God has planned for her.

The word 'recover' means to return to a normal state of mind, health and strength. 

Emma's name means to be 'whole' and 'complete'.

This blog is a way we can keep a personal record of Emma's progress and offer encouragement and hope to other parents on similar journeys along with the therapists / teachers that support them.

The field of neuroplasticity reveals the brain has been designed in such a way that it can change and heal itself. There is hope. 

In my work in disability, I've seen neuroplasticity at work. I've seen children with autism recovered after being told their prognosis was life-long. I've also seen children improve way beyond expectation with the commitment and dedication of loving parents. I'm so thankful to know these amazing families and to have this insight. Sharing their journey has made my journey a little easier.

After years of research I have shared our 'recovery diet' on the page What we do.

Information I will blog about include:

• Prayer & Faith

I trust that God is in control.  Whilst sickness and disability is not from him he is able in his sovereignty to "work all things together for good". Ultimately God gets the glory for Emma's healing and I'm in awe of the little miracles along the way, how he has comforted us in our grief, strengthened us in our weakness and lead me to discover the things that will help put her back together again. 

"With man, many things are impossible...but with God ALL things are possible"
 Matthew 19:26

• Biomed / Natural Medicine

At a basic level, if we want brains to work we need to make sure they are getting the nutrition they need and not filling them with stuff that impairs function. Topics I'll write about include nutrition, GAPS, diet, supplements and alternative therapies that have worked for us.

• Home based Therapy 

I plan to blog about our neurodevelopmental program and activities we do at home, music therapy, sensory diets, latest research with some home education information thrown in too.

I will also post videos so you can see what we do! 

If any of these topics interest you please subscribe to this blog or follow our recovering Emma facebook page.  

Thanks for your support as you journey with us! xo