A Winding Path

Its been a long time…

Last year got pretty chaotic, with Jai turning four, a new chapter of Jai starting nursery a couple of hours a day, the Epidemic Answers/TMR London Event and being blessed with writing a guest blog ‘An Evening of Hope and Inspiration in London and on top of that a dream holiday approaching we had some high highs but as winter took hold things got pretty low around here. Winter, always this time of year when our path thats flowing so beautifully takes a diversion to picky eating, gut dybolosis and lots of isms. Hmmm.

We had a great holiday away, Jais appetite actually improved dramatically to trying new foods and enjoying his meal times! Wonder what that is about being in the sun? Vitamin D perhaps?! A great holiday for my mind too which had gone into a serious overdrive while flashing red on fuel over the weeks previous.

Something we all needed. After Jai being so ill in November,  he had not been ill like this since then… That time. Illness always affects Jai, it sets him back. His sensory issues strike back. He becomes irritable and agitated.

So we were all seriously struggling with PTSD. Aren’t we all on this journey already? Well this sparked it big time in this family.

Our Holiday was just around the corner.

The beach… Well just what Jai loved and needed! Space, freedom and peace.

Christmas came by in the blink of an eye on our return home. It was lovely. Jai opened his presents!!! And I mean properly! He laughed and giggled! It was a success. Its was the first success actually since Jai being sick. Thank god, a breakthrough! So Christmas maybe not a success for the average persons way spending the day but for my son it was perfect. For my family, absolute bliss. A small family affair.

A New Year.

Doesn’t time just speed up as you get older?why is that? Well I started the year hopeful, optimistic and with a great plan in hand full of new chapters to getting Jai to complete health and happiness.

With ups and downs, twists and turns on this path. Diet infractions. Well not so positive the whole way through the first month but after one appointment. Boom that hope was back.

Homeopathy, so gentle but with Jai wow the power is undeniable. I love the approach. This was something that helped jai out of the clouds  when he first regressed and something I was excited to get back on top of.

Theres a whole post coming in this one!

I Decided to continue our Son-Rise program and homeschool from September, as of when he reaches school age. Well just as we mean to go on really and adding in some more creative fun free time! Arts and craft, cooking and digging around in the mud. Sticking with what’s working while exploring other approaches also.

Focusing on communication and speech, lengthening interactions initiated by himself, keeping his sensory diet going,  balance, numbers, insects well especially ladybirds. Jais favourite. Bug hunting!

This will be the start of a regular posting, we are back in the groove and walking this path strong to the end.

An Autism Mum Is In Need Of Our Help

Raising a child with autism can really take it’s toll on you as a Mum. It’s constant, it’s stressful and at times yes, it’s exhausting.

As a parent to a child with autism you are their sole carer, advocate and biggest supporter. You would do anything and everything in your power to help your child succeed and reach their full potential, to address their medical needs. But as our job as parents is day in day out, we never have time to keep check on our own health, make sure we are healthy, well we hardly have a few seconds to brush our teeth in the morning to be honest. We must.

The financial costs of raising a child with autism, treating a child with autism is staggering, parents are on a constant up hill struggle with the costs of therapies, diet and testing just to name a few. That’s why I cannot imagine how hard it is for this family right now.

Melanie Baldwin AKA Booty Kicker from The Thinking Moms Revolution needs our help. Melanie now suffers from spine and liver cancer after previously beating breast and bone cancer. As Melanie Struggles to overcome her current health issues, her son Luke who is self injurious, quite ill and severely affected by autism, still requires 24/7 care, love and attention.

Melanie and her son need our help.

If you would like to donate and help this family directly through an incredibly difficult period in their lives please do, it will be greatly appreciated. As I said before I cannot imagine the struggle they are facing.

please follow this link to donate http://tinyurl.com/njeq66s

if you have not read any of Melanie Aka B.K’s blogs, you must.

You can view them here; thinkingmomsrevolution.com/category/B-K-tmr/

They are truly inspirational. Melanie is truly inspirational.

Time to heal

Wow how time flys by, this year so far has been an exciting one!

We had a plan this year in our minds right from the get go that this year we were headed right where all my instincts had been pulling me since reading “10 things you can do RIGHT NOW to help your child with autism”, to The Autism Treatment Centre of America – The Son-Rise Program Start Up.

An amazing warrior mum i had met on facebook ( now such a special friend to me) had been to the ATCA herself for training told me that the time there is life changing, little did I know then just how truly life changing it would be.

That time at the Start Up program was incredible, an emotional roller-coaster but a great one.
This was so much more then I had imagined it to be, so unique.
I was overwhelmed with relief to be there, to be around like minded parents, thinkers, people and we were all there for the same reason because our love for someone, our love for their futures had brought us there.

Everything I learnt made so much sense to me, it was like a veil had been lifted and I could see just how to reach Jai in a way he could understand and feel comfortable in, a way of connecting and inviting him from his own special place into ours.
I fell in love with the positive thinking, the principles and the 3 E’s (Energy, Excitement and Enthusiasm)!
Each evening I returned to our hotel with excitement to start, to try out what I had learnt that day , excitedly talking Dimitri (my partner and Jai’s dad) through each step, i couldn’t get the words out fast enough!
Each day Jai responded!!!
He could see, feel and sense the changes I had immersed myself into and So could I.

On our return from America I got started implementing the techniques gradually and clearing out Jai’s room which is now Jai’s Son-Rise play room.
We had our fist appointment with a DAN practitioner/nutritionist (Defeat Autism Now), I was excited.
This couldn’t have been a better time as Jai was in pain with his belly, behaviour was worsening and some new behaviours were coming into play.
We did an ATEC 82.
It had gone up two points since Decembers 80 score and it was then beginning of May, I had to get started. Low and slow, one supplement at a time starting with the new probiotic and digestive enzymes.
A week had passed and what a change!!!
Aggression and self injurious behaviour had subsided I’d say 90%, my heart was filled with joy!

Weeks passed it was now June. Another ATEC I thought as I knew I would see the difference in the number, 67!!! Woohoo this was incredible, a little over four weeks and we were seeing the changes in front of our eyes.
We still have a long way to go on this journey but through the Son-Rise program, Biomed and some great organisations the Canary Kids Project and Thinking Moms Revolution, we are now filled with HOPE that we can’t get enough of for our little mans future!

This year so far has brought so much hope, happiness, love, acceptance and some very special people into our lives- Heather and Rana (so glad to have met you both at the Start Up) but I must say a huge thank you to one special friend in particular, an amazing warrior mum I met along this journey, the same warrior mum i mentioned earlier, Lindsey…
You have been such a support to me, such an inspirational friend that I have grown so close to.
You once told me we all have an autism angel and you are mine, I can’t express enough how grateful and honoured I am to know you Lindsey, so thank you again for all you have shared with me so far on this journey.

Forever grateful.

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…

Mummy and Me.

Back to the start. The 25th September 2010. Back to my healthy, beautiful baby boy being born. He was perfect. Perfect AGPAR scores. I remember feeling at complete peace as the lay him across my chest, forgetting everything that had … Continue reading