Another day in the rain – or not?

 
 
J took a day off so we could drive all the boys down to Brighton. It was pouring down as we drove. What would we do all day in the rain?
 
The sky was blue by the time we reached the coast and we had 2 hrs of sun,  picnic and a photo shoot on top of the cliffs at Seven Sisters. I realised that I never have photos of me with the boys as I am always behind the camera so we took some and then some more.
 
By the time we headed to Brighton, it was raining again.
Occupying four boys in the rain is never easy.
 
But… we spent 2 hrs… yes, 2 whole hours in one restaurant. Terre a Terre, my favourite ever restaurant, vegetarian plus it does all the options in gluten free too! Strangely, I am the only one who needs to be gluten free. We trialled it with the boys in the early days after diagnosis and it made no difference at all to them. It was a big treat for all the boys as a celebration for Thomas’ Mo Farah shield and passing his level 2 maths.
 
I sat there with all the boys being so grateful for being able to do so.
Years ago, we could never have taken them all out. They would be running around, they couldn’t sit still and they wouldn’t eat anything on the menu. We gave up taking them even to places where we could eat outside as the were ‘runners’ and would disappear. We never managed to eat outside of our home, even fast food restaurants were a nightmare unless there was a soft play area onsite.
It has taken years for them to reach a stage where they now behave nearly appropriately, aside of what might be almost normal teenage behaviour.
 
The difference years later is beyond anything I ever dared hope for.
We are on catch up time now. Catching up on family events like all being able to eat out

together and enjoying doing so!
All we need now is an endless supply of cash to pay for some more meals out. Feeding a family of six which includes three hungry teenage boys is always going to be an expensive treat.  But, it means it remains a treat and something we never take for granted.
I will never take for granted either, the fact that it is now possible.
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Behind the scenes – a mother’s stress

 
 
I post uplifting, inspiring stories. I post tales of my boys and all that they achieve against the odds.
I don’t always tell the flip side. People don’t want to hear stories of failure or hardship.
Well, perhaps they do, misery memoirs seem to sell well. Do they want to hear other people’s lives are worse than theirs? Is that the attraction? It’s not a competition with children with autism, we all struggle at different times in different ways.
I think there are enough misery stories out there and it’s not really me. Even if at times in the past, I have felt really miserable, I have tried to pick myself up and look forward. The future for us was worth fighting for. We have proved that and now I am in a place where I can write of success and triumph but it was not always so.
I have just finished writing a memoir of the past 18 years. In keeping with our family spirit, it is not a misery memoir. It is a tale of triumph but of course I tell it like it was and how hard it has been. I am currently seeking a new publisher for my second book, another hurdle to get past when I know no one in the publishing industry but as with everything else, I will not give up until I find one.
 
There is a cost to all of this. A cost to me, personally, to my health and my wellbeing.
 
I have had adrenal fatigue now for over 8 years. It is a condition which many mothers of ASD children acquire. We are fighters. We need to fight the system to get what our children need, often the right education and support. Sometimes we need to fight our own families and people’s attitude to our children.
Often it is the day to day stress of looking after our children which stresses us. The meltdowns, the fear for a child when you lose them temporarily while outdoors, trying to remain patient and understanding when your child breaks something deliberately. Some days can feel endless and exhausting. Truly physically and mentally exhausting.
Then, you fight the LA and you fight again and again. I have fought for four boys over so many years. Inevitably, there is a cost. Financially, tribunals can break you. Funding specialist reports to ensure placements continue costs. Add therapies to the bills.
But the biggest cost is to us, the parents, mentally and physically. My adrenal fatigue was caused by my body being forced to produce high levels of adrenaline over the years on a continual basis. There have been reports that a ASD mother’s level of stress is similar at times to combat stress.
This year, I have been fighting to get a placement for my two older boys. I started the process in December. I knew they would finish their current placement this summer. I was organised. I know the system. At the beginning of March their EHCP meetings took place. All the reports and paperwork were ready and done. It took the LA over four months to sign it off.  Four months while I worried about what we would do if they didn’t agree.
They finally signed it off. My adrenaline levels finally came down. But…a day later, the college rang to say they may not be able to start as the LA signed off too late. Too late to recruit staff.
The next day, I ‘crashed’. Crashed adrenally that is. It’s like jet lag and the worst hangover ever, like a bad virus. I felt sick, exhausted, double vision. I needed to go to bed but that isn’t possible.
We are waiting and hoping that they recruit in time for the boys to start their placement. My stress levels are still high.
Behind the scenes of my success stories is an exhausted mother, trusting the universe to provide as I alone can do no more.
Would I do it all again? Would I do everything I have done for my boys? A thousand times yes, yes, yes.
I am reaping the benefits now of all we have done for them. Their successes and triumphs are because of what we have done.
I may be tired but I am happy. I am delighted daily by all that they can do now. We are a truly, happy family. My fatigue is a small price to pay for all of that.
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