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 

When Parents Lose Hope.........

Recently in the media we heard about the tragic murder-suicide of a family with two children with autism.

Obviously, it's not okay to kill your children whether they are disabled or not.

But the story is interesting because it came as a shock, a surprise to those who knew the family. Why? Those parents were the 'good ones'. These were the parents who volunteered in the canteen and the classroom. They were the ones that attended school events, lived in a nice home, worked hard and appeared to be coping with the challenge of raising two children with special needs.

It's (generally) not your stereotypical dead beat parents who do this kind of thing. It's the parents who love their kids so much it hurts. It's the parents who have sacrificed for their special needs kids from day 1 because they so desperately want the best for them. It's the ones who've tried to stay positive and put on a brave face during therapy sessions and doctors appointments like they do every. single. week.

How do these things happen? 

The answer is simple  - parents lose hope.

Parents lose hope that the dreams they had for their child will ever be realised. They lose hope their child will live a meaningful life. They lose hope the behaviors will change. They lose hope that all they have sacrificed for their kids counts for something. They lose hope that tomorrow might be easier. Clearly, losing hope has devastating consequences.

Without hope - we die. Not literally but inside. 

Hope is what keeps us moving forward.

Hope is what helps us wade through the uncertainty of what the future holds to a place of rest where no matter what happens, "It's going to be okay".

One of the most challenging experiences I've ever had was working in the children's cancer ward. There were times when we believed in hope that a child would beat the odds - and they did and other times where I comforted parents while they held their dying child. It nearly broke me. Outside I did my job but inside I was struggling because I couldn't see the hope. 

I went to God desperate to understand and he showed me there is always hope but sometimes we need someone else to help us see. I thought there was no hope because the child had died but I learnt there was hope that one day the parents would experience joy again. There was hope that tomorrow would be a little easier than today and that the overwhelming grief wouldn't last forever.

As parents with children with special needs, we need hope like we need air. 

Without it, we die inside and it's hard to keep going. That's how these things happen.

Sometimes the darkness seems all consuming and we can't remember what the light looks like. That's when we need to reach out and ask someone to encourage, pray and remind us that no matter what happens - it's going to be okay. 

There's always hope. Keep going. xo

Addressing Developmental Verbal Dyspraxia

The more we continue Emma's neuroplasticity program, the more aware we become of her motor planning issues particularly related to speech. 

Emma has a few words but speaks mainly in approximations. Most words or phrases are so unclear not even I understand them. She has the desire to communicate and makes frequent attempts to use language but nothing recognisable comes out. She understands the rhythm of language perfectly and will imitate syllables but cannot make the correct speech sounds.  She also gets 'stuck' on the motor plan of particular sounds.

The word used to describe these symptoms is Dyspraxia. It basically means a problem in the area of the brain responsible for motor planning and coordination. Dyspraxia affects physical movement but can also impact movement required for speech. 

So what are we doing? 

Oral Motor Therapy

NACD provides us with oral motor exercises we do twice daily. These exercises involve trigeminal stimulation (massage), facial stimulation, mouth stimulation as well as various chewing and tongue exercises. 

We use chewy tubes and a myomunchee as part of our therapy. 

We also use ipad apps such as speech therapy for apraxia to work on specific sounds and we do lots of face-to-face work so that Emma can see the correct lip, teeth and tongue movement needed for particular sounds. I continually reinforce the initial sound of words e.g b-b-b-ball, g-g-g-girl. 

Bio-med Dyspraxia Protocol

We have just begun this protocol created by Kelly Dorfmann whose research looks at how different types of fat affect the brain.

It includes three key supplements

• Phosphotidyl Choline 
• Omega 3 / DHA 
• Vitamin E 

All supplements need to be given at the same time as they work together. 

Music Therapy

As a music therapist, I incorporate lots of music into our program.

I use drumming techniques to help develop Emma develop a strong sense of internal rhythm which is important for speech and language development. 

We also use familiar songs to develop speech and language leaving out the ends of phrases for her to fill in. e.g "Twinkle Twinkle little -----". This is a music therapy technique that many speech therapists use due to its effectiveness. Parents can easily incorporate this technique into their daily lives. 

Dyspraxia is one piece in the puzzle for Emma - but we look forward with hope to the day that all the pieces fit together!

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