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 occurred in the last few hours. A feeling you never forget.
As weeks and months passed by my baby begun to smile, babble, sit unaided, stare deeply into my eyes and look around for me when out of his sight. How quickly they grow, learn new skills and develop.
More months passed and Jai was growing so fast picking up new skills at every opportunity, he would say mama, dada, nana, point wave and play peekaboo. By 10 months my baby was cruising, eleven and a half months old he took his first steps all on his own and wow that feeling, a breath taking moment as a proud mamma!
Jai’s first birthday, i couldnt believe he was turning a year old already. I remember thinking they really are not babies for long at all. We planned a trip to London zoo. A great day, Jai enjoyed every second and couldn’t take his eyes off all the fish in the aquarium. Loved the animals. Oh that smile that just melted my heart.
We then celebrated with close friends and family in a local American diner style restaurant that evening. A lovely way to finish off the day. Jai was exhausted as we’re I. Some great memories were made that day. A day I will never forget.
In the weeks following Jais birthday he learnt new words, cat, bus and car, my babies personality was shining through. He was so healthy, happy and seen as advanced in many areas at his one year check up.
Little did we know of the changes that were to come a few weeks later…
How one decision can change everything.
11th of October 2011. Jai went in for his scheduled immunisations as he had since birth, i remeber feeling taken back when she said he would be recieving THREE vaccines that day, MMR, Hib/MenC and PCV. I felt uncomfortable, asking about side effects and informed about temperature and a rash but advised to give Calpol when we get home. I just remember the nurse saying “if your child catches one of these diseases, they would die.” I couldn’t take that risk. Not knowing all I do now! Arghh I could scream at my past self!
We went forward with the vaccinations…
What a mistake that was.
Jai had begun to get a slight temperature that day which turned to a high temperature, high pitched screaming (signs of brain inflammation) and painful diarrhoea in the days that followed.
I rang our GP and requested a call back. The advise given was keep giving Calpol, alternate between that and kids Nurofen. “Its probably toddler diarrhoea and teething” I was told, and not to worry.
In the coming weeks my baby was changing. I knew something was wrong, maybe it was my mothers instincts (like that same feeling i had at that appointment), i knew my son had changed. He had lost all balance, falling over with everystep, like a drunken sailor.
Losing skills such as waving, pointing and clapping, not picking up new words,not saying words as often and eye contact was diminishing. Back and forth to the doctor with no answers and just being told “We can assure you it’s nothing to do with the vaccines Jai received” and “wait until he turns two, Most children don’t speak many words at this age.” And as for the chronic diarrhoea, well that was still toddler diarrhoea and teething apparently.
They just didn’t get it, how could they, they would not listen. My son was losing skills, everything. I can now see they were to concerned with dismissing my child’s vaccine injury as a vaccine injury to actually hear what I was saying.
More weeks passed by Christmas came and went with Jai constantly ill, colds, coughs, sickness, the lot. Jai had dropped all words now except mumma and dadda, he also had begun to bite his wrists and hand, press his forehead against the floor and spin anything and everything he could get his hands on.
We had no answers, no advice and no investigations into what had happened with my baby. We felt alone.
I had already begun to dig, and I mean DIG for the answers myself. What I found… Completely shocking. To hear my sons story over and over again. The same order of events. Children all over the world. Just heartbreaking. I was already completely heartbroken for my poor baby but to hear so many families, so so many families exact same experiences. I hardly slept even when I had finally got Jai to sleep. Another change. My son had gone from a baby sleeping through the night to a baby who could not get to sleep, and when he finally did, he would wake not very long after. Screaming.
I knew, I knew what had happened to my baby. And I was angry.
Back to the doctors, it seemed like we were now there constantly week in, week out. I still didnt know where to turn for help. for something. Anything.
With a bit of a fight Jai was referred for speech and language therapy.
In my heart I knew this wasn’t enough. I knew autism had crept not so quietly into our lives. I just couldn’t sit around, my researching which had begun when these changes first arose well now it had gone into a complete over drive…
Firstly homeopathy, a gentle yet thorough route to first explore so we begun.
Along the way we came across CEASE therapy, going back through the vaccines Jai received the first ones being the last he received.
Within weeks giving Jai the MMR nosodes Jai stopped biting his wrists and hand, a massive breakthrough, the first.
I made a promise to myself and Jai that i would do everything and anything in my power up until my last breath to get him back, get him back to us, back to himself and back to the state of health and happiness he was born with. That he deserves.
Waiting and waiting to hear for Jais speech and language assessment, Jai’s speech had suffered he had stopped saying mumma and dadda consistently and now it was a rare occurance. I was crumbling inside but I knew I needed to be strong not for myself but for Jai, he needed me more than ever and I had to fight on in this battle.
Another month passed by now September, homeopathy was helping, Jais balance was improving and he was able to enjoy walking with the occasional trip rather than one every step. I was feeling a lot more positive with the results we were now seeing and learning a whole new language called autism.
Diet changes gluten and casien free a complete new world.
Something we delved into as soon as.
The changes were not instant but gradual Jai begun to look at us not just a brief glance in our direction which was rare, he seemed less bloated and his stools less watery than before. Another breakthrough, I would see a glimpse of Jai before his vaccine injury. Just a twinkle in his eye. Wow did that motivate me!
Jais speech therapy assessment had finally arrived, we went in and put everything out there on the table, this started with my sons vaccines and I talked her through his story and explained so now we are here. A little boy trapped in his own world.
We had been waiting since the end of March for this appointment with plenty of calls in between, as you can imagine I wasn’t in the best mood, come on my son had lost the only two words he had left waiting for this appointment!
Early intervention! Hello!
The assessment went on, we spoke of autism, i knew she knew this was just that. the look on her face said it all. But would they refer for diagnoses? Oh no, we were sent off on our way and told you will receive a letter within a week or two.
Jai was terribly behind for his age, he had lost ever skill he had known at a year old and was now about to turn two. He didn’t understand how to point, how to wave or clap his hands. He didn’t know how to interact, play appropriately or communicate verbally or any other way for that matter, it was heartbreaking to witness these changes in my baby in under a year.
I then and still do feel so gulity, guilty that I didn’t know what i do now and that I failed to protect him, that I stood by while this happened.
Then I pull up my socks, dig deep and remember my promise to Jai and to myself, with the help and support of my partner/Jai’s Dad we gain the strength, hope and positive attitude to keep searching down this road to recovery.
And we will never ever give up!