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! 

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 

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