2013 – New Beginnings

So after enough waiting around in 2012, we made a plan for 2013. First stop on this journey was getting an assessment carried out. We already knew the diagnoses.

We thought that this would help to get Jai the support and services he so desperately needed… Wishful thinking hey.
Its a date I will never forget 31st January 2013.
I knew what was coming, I knew from the moment we entered the room, Jai didn’t even acknowledge she was there. I knew what she would tell us but I had known for how long. I just didn’t want to accept what had happened. Oh that feeling like my heart was being ripped from my chest. It felt like i held my breath for the entire appointment. I knew it was bad. Unable to carry out all the test as Jai was still so unresponsive. He still didn’t understand how or why to turn a page in a book. The diagnoses was given “Childhood Autism”, all i could think was yes that and vaccine injury… Exactly as we expected. But uhh to hear those words. For me it was the realisation when someone is agreeing with what we had been seeing for months, well actually nearly a year.
I just kept thinking he has made some progress if they could tell me this now, why not then? Why not NHS???

So researching more and more I came across ABA therapy, Applied Behaviour Analysis, i attended the workshop straight away. I was excited, this was something I needed. Something that had that possibility to help Jai.
We started straight away working one on one with Jai, and went on to hire two lovely ABA therapists to come in and help make up the hours.
This is an intensive therapy, its advised to do the full 40hours a week but you can do what you can manage and more importantly afford. But what price would you put on you child development and health? There is no limit on that.

We had to give it a try, so we decided to see how it went over a few months. if it was beneficial we would stick and if not move on. After two months we just didn’t feel this was the right for Jai, Jai was getting extremely upset and anxious. We couldn’t continue.
It was hard to digest after everything i had heard that it wasn’t working for Jai. Sp hard. At that point that was all i had read was out there that worked. I didn’t know what to do next. So i just continued with the one on one play myself. I believe the intensive one on one between myself and Jai was pulling him a little more into our world. He would smile. I had to accept it, ABA just wasn’t one of the right missing pieces to our puzzle. so the search went on…

Summer was approaching now in May, by continuing one one one with Jai he was making improvements. And some big ones!

Our appointment with the Developmental Paediatrician had arrived, we were very positive going in knowing Jai had come a long way since his September 2012 speech and language therapy assessment I looked forward to hearing their thoughts on the progress Jai had made.

Jai had gone from no interest in toys what so ever, no verbal or non verbal communication, a child who did not respond to his parents calling his name or even our voice, didn’t understand anything we said and would lose interest in an activity after 30 seconds to a child who could sit with play dough for 17 minutes!!!

Back in September his sensory issues with touch, sound, light and smell had reared there head. He wouldn’t even touch play dough back then! Jai had come along way since then, he was no longer spinning everything in his reach, he would babble tunefully and use my hands as his to build blocks and play with toys, he would turn to the sound of our voices, when we called his name and his understanding, what a difference!
He understood juice, he understood sit down, come here,socks off and was sleeping back through the night (which he hadn’t done since before his regression) with only the occasional disturbance once a week if that.
My baby Jai was emerging, I could see him coming back.

With more weeks passing by and time just ticking on, we still had no answer to why Jai had still not passed a solid stool since before his vaccinations in October 2011. This is nearly two years! Come on! It’s absolutely disgusting, immoral and negligent that children are left in pain. Suffering in complete silence. Jai couldn’t tell me or show me he was in pain. he would lay over the arms of the sofa or crouch in a ball. I contacted someone of great knowledge in the vaccine/autism world, I wanted some answers. Who better to speak with then Dr Andrew Wakefield. He explained the gut-brain connection, he listened to me, listened to what had happened to my son, listened to these GI issues my son had been suffering with for over a year and a half and he told me who to contact for the right help. A few people. This man is a real Doctor. It’s a shame there aren’t more just like him. One of the few doctors I trust, and there’s less than a handful of them.

Finding out more about food, health and the gut brain connection we were into a whole new way of living. Well a whole new lifestyle. I educated myself on GMO’s (genetically modified organisms), organic whole foods and about vitamins and the vital roles they play in our bodies.

So know having gained as much knowledge as i could on the gut issues Jai was suffering with, i made am appointment with our GP. Purposefully someone other then the person we had seen on all previous visits. With the hope that they would listen. Toddler diarrhoea was not going to fly this time. No way. I told her what I knew. What I had read. The referral was made to Gastroenterology.

The Gastroenterology appointment.
Jais blood test were back and said to all be normal, a brief conversation, a physical abdominal examination of Jai and they said his belly is less distended then previously and soft. Maybe Jais healthy diet was helping not only his behaviours and attention but his gut… Could it be? The probiotics? I knew removing soya from his already organic gluten and dairy free diet was helping although they didn’t seem so impressed with it. I remember thinking, what else???

Summer was nearly over and we had enjoyed long days out with Jai playing, my son was running round the field in the sun! A year ago this was a dream! Days out with friends and family. a special summer. Jais sensory issues with light and sound were improving, a year ago it was a struggle going into Sainsbury’s, Jai was so over sensitive to sound and light there was a melt down as soon as we would go through the sliding doors. the bright lights, the noise of people. It was just way too much then, now not a hint of a meltdown in sight. A year ago Jai’s balance had just improved for him to walk without falling over, that summer is so vivid in my memory, i was constantly on edge about him falling over but now my son was running, that’s right running! And was there one fall that day in the field that summer???

No, not one!

With September approaching, getting ready for a lovely family holiday away to Sardinia I ordered a book from amazon to read on the flight, What You Can DO RIGHT NOW to Help Your Child with Autism, by Jonathan Levy. This book is amazing and was the start to something new and something special.

On the flight Jai was great, playing with his octonauts and us looking through his books with him he did so well. its a long process at airports and he did fantastic not one meltdown that i recall. One hour left until landing and Jai was asleep, head on my lap, octonauts in his hands and my fantastic partner and mother sleeping i whipped out my book and begun reading…
I had a feeling when reading through this book that this was it, it’s hard to explain a type of tingling excited sensation I couldn’t wait to begin implementing these techniques.
The techniques outlined in this book originated at the ATCA (Autism Treatment Centre of America), and by the founders of The Son-Rise program Barry and Samahria Kaufman. It’s a beautiful true story of parents trying to reach there child with autism, created from scratch their own way of therapy, how their son flourished with their love, support and acceptance, emerged from autism, graduated college and is now The Global Director for ATCA.
We had arrived at our destination, I felt unbelievably positive.
It was beautiful, I felt relaxed. Jai was enjoying the change of scenery from London, the bright blue sky, warm sand beneath his feet and peaceful sounds of the sea. What a good time to start these techniques, we started with making eye contact the main priority and some joining, joining in with stims, a stim is exclusive, with no interaction and performed alone. Jais eye contact had improved from nothing to something but we got more from bringing toys up to our eyes, blowing bubbles for Jai and using that as a game for eye contact, and Joining Jai jumping, his favourite!

we continued this through our holiday.

We had arrived home having had a wonderful break away in a unbelievably positive mood, I had a few chapter left to read and couldn’t wait to find out more.
We were already seeing results.

25th September, Jai’s birthday.
Three years old, I couldn’t believe my baby Jai was turning three!
How time flies by we planned a lovely party at a small farm for Jai not only to celebrate his birthday but his progress.
He had come so far. I sat and watched as he ran around looking our family and friends faces, enjoying his birthday (unlike the previous year), he was happy!
We held a baby chick and petted some rabbits, fed some goats and went around the farm on the tractor. Jai thoroughly enjoyed his birthday party, and that’s exactly what we wanted for our little mans special day.

October 4th, my birthday was here and also Jais review of progress with the Occupation Therapist.
We were happy going in and knew the lady we see would see the results in Jai that we had seen in the last month…
Jais OT noted; Jai is smiling more and eye contact is often sustained, Jai looks at parents to get their attention, Jai was able to post coins, coloured shapes into the shape board, enjoyed looking at books and turned pages, when encouraged Jai was engaged, focused and able to immitate drawing a circle. She had seen the progress Jai had made, what could have been a better birthday present!

I had found one of the big missing pieces to our sons puzzle, looking forward to learning more about this piece and now beginning the search for another missing piece to fit in place.

To be continued…


2 thoughts on “2013 – New Beginnings

  1. Lana I remember it all. Jai has come such a long way so far. You are both doing a brilliant job. I look forward to seeing more from my gorgeous Grandson. Xx

  2. Lana your absolutely amazing and all the work you’ve done not solely for Jai but for Polly’s Place Autism trust just shows what a remarkable person you truly are. I know of the up hill struggle you’ve had to endure and seen how it’s not knocked you down but made you stronger for Jai and other children who have been ignored and not had a voice and their parents.
    I am so very proud of you, keep up the fantastic work.
    Igorance is not bliss! Thanx for removing the veils.xXXx

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s