A new year a new update!

Gosh! It's been a while.  The last 15 months have been a really big roller-coaster for us. Loosing Lex, beloved opa, has just sent us all spinning.  I don't really want to write about that because it's all still quite raw.  
Noah got very ill afterwards, it really was too much for him.  It made us realise how much Noah is aware of what is going on around him.  Noah ended up in hospital for observation for 2 days as he'd been experiencing weird saturation dips.  The cause is still unknown but for safety Noah has to sleep on his breathing machine.  This winter Noah has been more and more reliant on his breathing machine and oxygen.  I believe that Noah is just burnt out.  He's been through so much in his little life that his body has just used up all available nutrients.  
I've been turning more and more to what is known as alternative therapies to help Noah.  I have seen some progress with Homeopathy which is encouraging.  Although my spoken Dutch is much better now, I'm still not very good on written Dutch, which has hampered my search for treatment for Noah.   Since Lex has passed, I've come in contact with people that have really helped me get Noah the care he needs.  Maybe you don't believe in this kind of fanciful thinking but I think Lex is busy organising things for his grandson, and he's good at it! 

One of the first organisations I came across was Stichting Horison.  They run courses for parents and volunteers to help children with autism, (the course is also valuable for all children that have contact/communication difficulties).  These courses are held over the whole of the Netherlands, but there are only a few per year.  This time the basic course was being held in Loosduinen, an easy tram ride from my home. I learned so much about autism and about myself, it was amazing.  I have a library of books at home about autism, I didn't think it possible that I would learn new things, I just thought I would listen to how others explained it.  How wrong I was.  I felt as if my eyes were finally opened and a light bulb went off in my brain! So insightful, so inspiring.  The second course a few months later in Amsterdam was just as brilliant.  Even thinking about the courses fires me with enthusiasm.  It has to be experienced to be believed.  The course gives you all the tools you need to start a play programme at home. Playing one to one with Noah and allowing him to lead the play.  Through play and positive experience Noah can chose what he wants to explore.  Noah has had a few play dates arranged with Stichting Groei  and he loves it.  We have been amazed at the results.
This last week Noah was playing on the floor and Wendy called me over.  She wondered if I had noticed that Noah can count?  She had been counting the cars that Noah had been playing with and he started moving his fingers to indicate the numbers.  As she's excitedly telling me this story Noah started frowning and giving his "dislike" face.  Wendy then turned to Noah and said "You don't like me talking about you like this do you?" and Noah shook his head No.  By this time my mouth started dropping open.  "Why don't you play with your orange toy?" asked Wendy.  Noah looked around him and then selected his orange toy to play with.  I burst into applause and gave Noah a huge hug.  He was very please and decided that he now needed to wrestle and be tickled by Wendy.  After all this excitement Noah capped off the day by choosing correctly a yellow car when asked.  
To be honest, Thijs and I were a little spaced out by this - we didn't know what to think.  Had I really just seen this, did it really happen?  Our son can count and knows colours.  The next day, not to let any grass grow under my feet, whilst playing tickle with Noah I asked him where his nose was.  Using my finger, (he doesn't have great fine motor skills yet), he pointed to his nose.  Then his tummy, then his foot and then his "big tooth"!   The last one had him giggling.   Our son is a genius!  We've never really taught him these things, he's been picking things up even with all that's going on with him.  He's managed to learn these things.  Giving him the space and being open to Noah's communication has allowed us to see a tiny view into Noah's world.  It is amazing and a huge privilege.

We're also starting a new communication system with Noah.  It's called Picture Exchange Communication System or PECS for short.  On Thursday we're having an introduction course together with all the nurses.  We'll be coached on how to help Noah use the system for a few weeks and then hopefully Noah will be in full swing.  I am so curious to see what Noah has to say to us.  This is so exciting.  Finally Noah has the opportunity to communicate.  I'll keep you updated as we progress.

We've also found a medical doctor that practices using natural remedies.  It's taken nearly 4 months to get this appointment but I'm glad we did it.  Our first appointment was mostly telling Noah's history but she made some astute comments, which was reassuring.  Noah's having some blood-work sent off to the lab, we should have the results by the end of this month.   We also got advice about changing Noah's diet.  I'm still in the research phase but it looks promising.  It's called the Specific Carbohydrate Diet and it's advised by doctors for patients that have gastrointestinal problems that don't respond to traditional medicines.  If it means helping Noah to finally have a normal poop, I'm all for it.  

We're starting 2015 emotionally wrung out but feeling a bit more positive.  It is fantastic to see progress.  Who knows what this year will bring, there are so many factors making life uncertain.  We are however putting our best foot forward and letting go of what holds us back and putting our faith in what holds us up.  

Wishing you all a healthy and loving 2015. xxx