A lot of the boys issues are not only cognitive but behavioural. The behaviour is what makes life so difficult with the boys and stops us from being able to enjoy them and stops them from being able to enjoy so many things that other little ones take for granted. A post man knocking on the door could set the boys off, someone talking to me at a play group...anything that isn't in their control.
We can get through the day just fine as long as we manage them entirely and stick to their routine but any deviation from this is an exhausting battle and one that I just can't fight any more. We are desperate now and thanks to our amazing parents, we are able to start the ABA programme.
ABA is expensive and intense. There is no way we could afford to do this without their help and it can literally be a life changing therapy if it works so we have huge hope for the future now. It finally feels as though we are doing everything we can for the boys and to find some kind of normality where we can enjoy being a family would just be incredible!
In typical Fox boys style however, they have already started to take the mickey out of the ABA techniques we are trying on them. In order to get the boys to wait for something quietly (instead of repeating the same thing over and over again until you want to jump out the window) - we were told to very calmly hold up our hand and say 'wait please' and just ignore any further whines. This has resulted in both boys coming over to us when we ask them for something, raising their hands and asking US to wait. They also do a countdown on us and I caught them telling each other off and telling each other to calm down nicely then bursting in to hysterics...I think we have some work to do before this starts to have effect!
As well as starting ABA we have got even deeper in to the diet side of things. I've joined 15k other mums in their plight to 'recover' their children from ASD by joining a group on Facebook called Recovering Kids. This group is filled with fighter mums. We spend every spare minute reading, researching, listening, speaking to doctors, looking at every avenue we can to help our children. There are a huge amount of mums on the page who have done it and have made it their mission to help other mums do the same. All of us scrambling for a spare minute here and there to learn more about this whole new world of biomedical research that has led to so many children recovering and coming off the spectrum completely.
We spoke to another doctor in America who believes that free glutamate plays a big part in ASD and through eliminating this, children can be recovered. This means eating only whole foods, lots of fats, reduced meat protein and an increase in fibre can lead to recovery - no need at all for supplements or anything else at all. Although this makes perfect sense, a lot of mums who have spoken to her and follow her protocol do still take supplements and add in other bits here and there from other doctors they have spoken to. There doesn't seem to be one thing that works for everyone. You have to speak to a lot of different doctors and pick up the bits that you think work for you. All of this of course whilst you spend every penny you have desperately seeking that one thing that works for your family. With my very limited biomedical knowledge I'm reliant on a lot of the mums in the group for help.
I'm learning about camels milk, Bravo yoghurt, red palm oil, ghee, cold pressed oil, the effects of phenols in foods, histamines in other foods, Ion cleanses, protein fermentation, estrogen in flax seeds, magnesium from pumpkin seeds, calcium in chia seeds, mito dysfunction, CFD and so many other things which fly around my head at 3am when I can't sleep!
I'm inspired by these mums and although it may be false hope I'm holding on to, I have to have hope. Without it I don't think I would be able to get out of bed in the morning. I am fighting Autism and I WILL win. Or..die trying but one thing is for sure, I'll never give up.
Although we haven't seen any significant changes in the boys since starting the diet yet, we are noticing a big leap in their love for each other.
They're best friends and I love to see them walk down the street holding hands. Not because I told them to but because they decided to - their little faces as they run at each other throwing leaves at one another and squealing with laughter. We are so lucky to have these moments. They're either holding hands, hugging, jumping on each other or standing on the sofa together singing in the mirror. Such show offs. They must get that from their dad...!