One step at a time - NACD 12 months on

One step at a time. 

That's my motto at the moment. 

When you have a child with a huge number of developmental challenges - the idea of 'recovery' seems a million miles away.  

Everything is less overwhelming when we take it one step at a time.

We began the NACD  program just over 12 months ago.

What is NACD? 

NACD is a program based on neuroplasticity - the brains ability to change, grow and heal with the right input. It is an individualised program based on assessments and evaluation that I implement at home multiple times a day. It involves different activities that address Emma's challenges such as deep pressure input, running, flashcards, sensory stimulation and oral motor excercises. 

It's hard work. But worth it.

Progress Update

She's stronger!

The most significant change we have seen is with Emma's motor planning (dyspraxia). She is significantly less awkward and able to do things she wasn't able to do 12 months ago e.g sit down on a chair, climb up on the trampoline, walk with a cross pattern and jump! 

She is noticeably stronger (improved low muscle tone) and less clumsy.

She's developing play skills!

12 months ago Emma couldn't play independently - she would just walk around holding a toy or object. Although she still does this she also performs 'concerts' in front of the mirror, flips through books, puts dolly in the pram and takes her for a walk and sometimes creates her own sensory play using items from the pantry or fridge! 

She is processing information quicker!

Although her auditory processing is still an issue (also due to her hearing impairment) she is processing information requests quicker. She is also now able to process 2 pieces of information and knows over 100 flashcards which indicates her good visual attention and ability to retain information. 

Her level of processing now has meant we can start teaching her to read by introducing word cards.

Speech? 

We are still having challenges with speech although she has made significant gains in the last 12 months and is now able to imitate sounds and use 'some' words. Although she has more words than she had a year ago, she is still predominantly using gesture and jargon to communicate. She manages to communicate quite effectively without speech but we desperately want her to speak! 

Looking ahead to the next 12 months......

I would love and appreciate prayer for......

- Speech!!!!!!!!!
- That she will be ready to begin toilet training
- Her sequential processing will continue to improve 
- Her physical health including her hearing remains stable
- Wisdom and strength for me...please.

We look forward to the next 12 months with hope and anticipation! 

Neurofeedback Therapy For Developmental Disorders

I am often in awe of how the right doors open for Emma as we move forward along this journey.

It starts with a thought, an idea, a chance encounter, a book I stumble across, a website....some ideas fade away but it's the ones we can't get out of our head that we need to pay attention to. Some people call that intuition but I know it's the voice of God directing to me towards the things that are going to help recover Emma. I know I'm not alone.

So why Neurofeedback?

After 6 months of doing the NACD neurodevelopmental program we began seeing results. We were no longer treating the symptoms of her disability but targeting the cause: Her brain. We had begun the process of re-wiring Emma's brain to function like a normal brain. 

But was there something more we could do to accelerate her progress?

I waited.

And then... someone mentions to me how neurofeedback (neurotherapy) basically cured their child's epilepsy. 

And then....over the Christmas holidays I'm reading a book on neuroplasticity and an entire chapter happens to be dedicated to the effectiveness of neurofeedback for children with developmental disorders.

The more I read - the more excited I became. 

And then I see a sign while I'm driving advertising a psychologist who practices neurofeedback.  I call. The receptionist was so incredibly kind and encouraging that I felt I may have been talking to an angel. I couldn't believe how 'right' this felt.

Our First Meeting

The psychologist acknowledged Emma was a severe case and offered a less common form of neurofeedback called the LENS (low energy neurofeedback system) which treats central and peripheral nervous system functioning. Thankfully, this is the less expensive kind.  

I was told there were no guarantees but the expected results would be an 'acceleration in her progress' which was the exact 'thing' I had been praying about. The psych. also said that Emma was more likely to respond to the neurotherapy because of all the other 'work' that has gone into healing her brain e.g the diet, supplements and neurodevelopmental program. What encouragement!

Our First Session

Following her first treatment we saw a huge increase in her energy levels. 

Emma has always been a low-energy kid and sleeps..A LOT.  She is often pale and lethargic. That night she didn't crash as soon as her head hit the pillow and started resisting bedtime. After that she stopped falling asleep in the car on short trips (this is huge because it has always been annoying!). Her meltdowns became more intense so we thought perhaps the stimulation had been too much.  But we realised the meltdowns were actually a response to an increased awareness of what was happening around her.  She was becoming frustrated at appropriate things like not being understood,  being left out, not being allowed something she wanted...all pretty normal for her developmental stage.

Session 2-3

Emma's increase in energy levels continued and her speech became clearer! She seemed so much more 'switched on' and her engagement during program improved. This isn't surprising as the evidence base for neurofeedback is in its use with focus and attention for those with ADHD.

And it continues.............

We have had 7 sessions for far (out of 20) and it has been incredibly effective. Our family is constantly marvelling at something 'new' Emma has done. She is getting really good at following simple requests like "Shut the door" (something she couldn't do before starting NACD) and she is using language more spontaneously e.g today looks at a chicken and said "chicken" without being told to say "chicken".

I should now add that this acceleration in development has meant Emma is like a tornado. Her new favourite thing is drawing on our floorboards, walls, windows, anywhere really...usually in permanent marker. This new 'intensity' is so similar to what my boys were like as toddlers that the 'craziness' is actually comforting - it feels normal.

Neurotherapy has been the PERFECT compliment to our neurodevelopmental program and I strongly believe that a neuroplastic approach to early intervention is the key to recovery for kids with developmental disorders. 

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