19/4/12
Well the Superhero went back to school today and I am heaving a huge sigh of relief. Midterm was hard work. We can just about handle one week off but two is a nightmare. On the last trip to the zoo we had a few meltdowns and I was close to tears. I am dreading the long summer holidays. How on earth will I cope with out the structure of school? What can I do to keep a non stop ball of energy entertained for six weeks? Answers on the back of a post card please.
It just seems to be getting harder and harder to do this. I dream of even an hour to myself, just one hour where I don't have to be Sherlock Holmes and see every little possible trigger. Anyone want to swap lives? No takers? Yeah , didn't think there would be. I'm off to eat my body weight in chocolate and drown in self pity. Normal service shall resume.... sometime.
Tuesday, May 15, 2012
A Small Victory
So last week was my birthday. It was celebrated very quietly, with no singing, no birthday cake or unwrapping of presents but I did get one exciting piece of post. The Superhero was awarded his domiciliary care allowance. To say that I was shocked would be an understatement. I had my appeal letter already written I was that sure that we would be refused. There are so many families being refused the DCA that I had myself convinced that I would have to fight tooth and nail to get this. It seems someone was looking out for us once again. Cheers Granda, keep up the good work.
With regards the GFCF diet I haven't been the strictest about it but still seeing improvements. There is no substitute for real chocolate though and that is one addiction I can not seem to kick. Any tips?
The Princess has been finally transferred into her own pretty bedroom and seems to like it. Its such a nice room that it puts the rest of the tip/house. House keeping is not one of my skills but I am trying to keep the Superhero's and the Princess's room nice and neat. Maybe it will rub off on the rest of the house? I can always hope!
Hopefully I wont leave it so long between posts again but it takes a lot of energy to keep up with a Superhero and its definitely more than I have right now.
Tuesday, April 10, 2012
Progress or coincidence?
So we have started the GFCF diet (sort of). The Superhero no longer has porridge and now eats gluten free/wheat free/dairy free bread. So far his excema has nearly gone, eye contact is up and we have loads more sentenances and less talking about himself in the third person. The down side is he is eating practically nothing, is losing weight and is sleeping alot which is very unusual for him. How long do I let my Superhero survive on GF/CF toast and chips? Do the pros outweigh the cons?
I despise this about his condition, this horrible questioning feeling about whether I am doing the right thing by him or not. It's so hard to know as Superhero hasn't yet got the language skills to tell me if something is wrong. He can't tell me if he is hungry or sore or sick. I am clueless.
Once a parent gets an ASD diagnosis they have to turn into Sherlock Holmes and deduce everything from the smallest clues given. It's hard, very hard and I feel totally alone while doing it. Not even the Rock Star Daddy or Magnificent Granny get it fully. If I miss something that triggers a meltdown then its my fault that the Superhero has a bad day, that he hurts himself, that he gets upset. Its an awful feeling seeing your child in pain and knowing that its your fault. On that self pitying note I am signing off for this post. Tomorrow is a new day and I'll get up, don my deerstalker and get ready to do battle all over again.
I despise this about his condition, this horrible questioning feeling about whether I am doing the right thing by him or not. It's so hard to know as Superhero hasn't yet got the language skills to tell me if something is wrong. He can't tell me if he is hungry or sore or sick. I am clueless.
Once a parent gets an ASD diagnosis they have to turn into Sherlock Holmes and deduce everything from the smallest clues given. It's hard, very hard and I feel totally alone while doing it. Not even the Rock Star Daddy or Magnificent Granny get it fully. If I miss something that triggers a meltdown then its my fault that the Superhero has a bad day, that he hurts himself, that he gets upset. Its an awful feeling seeing your child in pain and knowing that its your fault. On that self pitying note I am signing off for this post. Tomorrow is a new day and I'll get up, don my deerstalker and get ready to do battle all over again.
Saturday, March 24, 2012
Am I better yet?
So the past few weeks have passed in a blur of fevers, chills and general feeling yucky. What I presumed was a simple flu turned out to be pneumonia. I don't do things by half, after all if you are going to be sick go all out! Thank goodness for Rock Star Daddy as he has basically taken over all parental duties for the past fornight while I have been comatose in bed. It did give him a chance to see exactly how much I do everyday with the Superhero and the Princess. I am now a Super mummy in his eyes which is nice!
All this illness meant of course that the GFCFSF diet was put on hiatus (I'm not that cruel that I would make Rock Star Daddy implement it on his own) so the house is still full of yummy naughty things while I recover. So for now I will lie on the couch surround by chaos eating snacky things as sick people do and swearing that as soon as I get energy again I will get everything in order. Honest
All this illness meant of course that the GFCFSF diet was put on hiatus (I'm not that cruel that I would make Rock Star Daddy implement it on his own) so the house is still full of yummy naughty things while I recover. So for now I will lie on the couch surround by chaos eating snacky things as sick people do and swearing that as soon as I get energy again I will get everything in order. Honest
Wednesday, March 7, 2012
It's time to clean house
I mean this both metaphorically and literally. The place is a pig sty and instead of getting up and working that elbow grease I am practically comatose with tiredness on the couch. The princess does not like to sleep. The princess wants to feed 24/7. The superhero is tired all the time. The superhero does not want to feed at all. It seems its all or nothing with my lot. The happy medium is an elusive dream.
So in order to try regulate the two of them the plan is to go GFCFSF. My life seems to be one long acronym now. We have been advised that the Superhero and the Princess have high intolerences to gluten, casein and soya. To the Superhero it acts like morphin, doping him up and fogging his brain. To the Princess, it acts like a toxin, irritating her skin and tummy so she vomits. In order to help them both we have to cut all this out of our diets. Hard enough when you eat a wide range of things but for the Superhero it practically cuts his food intake in half. So why bother even trying it? Countless mums have said it has cured the excema that their kids had, gotten rid of their childs reflux and after a number of weeks enabled their brood to eat a whole new range of foods. So I have to stiffen my lip, prepare the cupboards and say goodbye to all my favourite foods. This may actually kill me but such is my desperation that I will give it a shot. Tonight though, I feast. Chocolate chessecake anyone?
So in order to try regulate the two of them the plan is to go GFCFSF. My life seems to be one long acronym now. We have been advised that the Superhero and the Princess have high intolerences to gluten, casein and soya. To the Superhero it acts like morphin, doping him up and fogging his brain. To the Princess, it acts like a toxin, irritating her skin and tummy so she vomits. In order to help them both we have to cut all this out of our diets. Hard enough when you eat a wide range of things but for the Superhero it practically cuts his food intake in half. So why bother even trying it? Countless mums have said it has cured the excema that their kids had, gotten rid of their childs reflux and after a number of weeks enabled their brood to eat a whole new range of foods. So I have to stiffen my lip, prepare the cupboards and say goodbye to all my favourite foods. This may actually kill me but such is my desperation that I will give it a shot. Tonight though, I feast. Chocolate chessecake anyone?
Thursday, March 1, 2012
So here it is
Intro to Us
The day I officially became a fully paid up member of the mummy club was one of the happiest of my life. I revelled in doing the very best for my son. I imagined his future with glittering success, numerous friends and no complications. I was wrong. Now his future is filled with doubt, worry and a horrible fear of the unknown. All because of one word. AUTISM. It noticeably took a hold of my son when he was 18 months old. Before that there were issues but nothing I couldn't.t handle. I just believed he marched to his own beat. He was advanced for his age and I admit that I would almost gloat about how much he could do compared to other kids. Then a switch was flipped without warning. He went from being able to feed himself and eat all most everything to being unable to hold a spoon and only eating porridge, toast and chips ( the same to date). Whilst I had my suspicions, they weren't confirmed until after his second birthday. I was pregnant with the princess and was told that the Superhero needed to be assessed by the Early Intervention Team. It didn't matter that I was already concerned about him, that I knew he needed help. It still hurt that I was being told that there was something wrong with my baby. I went into shock mode and the next few months passed in a blur. By June I had the first assessment where acronyms such as ASD and SPD where talked about. Speech and Language therapy was organised as was Occupational therapy. A psychologist had to visit to see him play, a dozen questionnaires were filled in, doctors and dietitians were seen and eventually we had a ream of paper, reports etc that all stated the same thing. My Superhero had Autism. And so began a new way of life, of visual schedules, body brushing, sensory therapy, ABA pre-schools and the isolation that comes with it all. Oh Joy.
The day I officially became a fully paid up member of the mummy club was one of the happiest of my life. I revelled in doing the very best for my son. I imagined his future with glittering success, numerous friends and no complications. I was wrong. Now his future is filled with doubt, worry and a horrible fear of the unknown. All because of one word. AUTISM. It noticeably took a hold of my son when he was 18 months old. Before that there were issues but nothing I couldn't.t handle. I just believed he marched to his own beat. He was advanced for his age and I admit that I would almost gloat about how much he could do compared to other kids. Then a switch was flipped without warning. He went from being able to feed himself and eat all most everything to being unable to hold a spoon and only eating porridge, toast and chips ( the same to date). Whilst I had my suspicions, they weren't confirmed until after his second birthday. I was pregnant with the princess and was told that the Superhero needed to be assessed by the Early Intervention Team. It didn't matter that I was already concerned about him, that I knew he needed help. It still hurt that I was being told that there was something wrong with my baby. I went into shock mode and the next few months passed in a blur. By June I had the first assessment where acronyms such as ASD and SPD where talked about. Speech and Language therapy was organised as was Occupational therapy. A psychologist had to visit to see him play, a dozen questionnaires were filled in, doctors and dietitians were seen and eventually we had a ream of paper, reports etc that all stated the same thing. My Superhero had Autism. And so began a new way of life, of visual schedules, body brushing, sensory therapy, ABA pre-schools and the isolation that comes with it all. Oh Joy.
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