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. 

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 

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!