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Alice

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The complexities of nutrition

Food and diet. It’s a very important topic of conversation for me and even more so because of Jude’s disabilities.

Since he was tiny, I have gradually become more and more aware of the benefits of a plant-based, healthy diet particularly for growing minds and bodies and especially those minds and bodies who are struggling a bit more than others. I have touched on it before but it astounds me how unimportant the discussion of nutrients, food and good eating habits seems to be to special needs schools. Is it just me being a bit obsessed or am I missing something?

Having been on the governing body at Jude’s school a few years ago, I have been at school during lunch times and I won’t lie, it horrified me what I saw in some of the packed lunch boxes. Now, it is always argued back at me that not everyone can afford to eat healthily but I just simply do not buy this suggestion and I’m pretty sure I could write out a weeks menu for very little money. For example, one of my children’s favourite meals (even Emmeline eats it and she barely eats anything) is a big bowl of rice, lentils and peas cooked in tinned tomatoes/passata. I don’t mean this to sound pretentious or arrogant, my point is merely that people are not as educated in nutrition as they should be and unless they have a deep interest in the subject, are unlikely to investigate it to any depth.

There are little tips that can help keep costs down, for example bulk buying fruit and vegetables from a market, especially if you turn up at the end of the day as traders often give you fantastic deals just to offload their stock. Also, cook in large quantity and save portions for later in the week. I often make huge pasta salads that the children seem to really like.

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Would it help people if I posted cheaply made, nutritional meal ideas? Please let me know in the comments section or message me directly.

There is a fabulous organisation that obviously feels as I do about nutrition being so important called the Caroline Walker Trust http://www.cwt.org.uk/about-the-trust/   Their main aim is to improve public health and wellbeing through better nutrition and they focus in particular on the poorer areas of society which obviously includes disabled people and those living with disabled family members (see my post on employment a few days ago).

Below is a link to their nutrition guidelines for children and adults with learning disabilities:

http://www.cwt.org.uk/wp-content/uploads/2015/02/EWLDGuidelines.pdf

This guideline discusses various learning disabilities and highlights vitamins and minerals that may be of particular importance for people with specific conditions. I have copied out a few sections that interested me most…

“There is some belief that dietary restriction or dietary supplementation will benefit people with autistic spectrum disorders (ASD), although there is only weak evidence that these strategies are beneficial. The most common dietary treatments suggested are the exclusion of gluten and casein from the diet and/or nutritional supplementation, for example with high doses of vitamin B6 and magnesium.”

 

For brain development, they suggest an increase in Omega-3 oils. See quote below:

“Omega-3 fats –¬†Fish oil

Oily fish such as herring, mackerel, pilchards, sardines, salmon, trout and fresh tuna

Other omega-3 fats can be found in oils such as rapeseed oil, soya oil, walnuts and almonds, pumpkin seeds, organic milk and green leafy vegetables. However, there is no evidence that these omega-3 fats protect against heart disease.”

I contest the suggestion that fish oil is the ideal place to gain decent amounts of Omega-3. In our family we take Omega-3 supplement oil in the form of plant algae which is where the fish actually gain their high level of Omega-3. With the problems of over-fishing and the depletion of stock within our seas (not to mention the environmental impact of fishing), I think it is careless to recommend increasing the consumption of fish. We take these:

Plant algae

You can order them online or buy them in Holland and Barrett.

This website is fascinating, particularly this page on autism –¬†http://www.foodforthebrain.org/nutrition-solutions/autism/about-autism.aspx

“We have known since the 1970s that a nutritional approach can help autism, thanks to the pioneering research by Dr Bernard Rimland of the Institute for Child Behaviour Research in San Diego, California. He showed that vitamin B6, C and magnesium supplements significantly improved symptoms in autistic children.”

Have we known this since the 1970s?? Does it not amaze ANYONE AT ALL that since I gave birth to a severely disabled child ten years ago I have not had one ounce of support in regard to diet and nutrition?? It horrifies me to my absolute core.

The topic of nutrition is so so in-depth and complex and just looking at the few morsels of information I have touched upon¬†in this post, it shows that the constructive advice and support of nutritional experts is imperative in order to help learning disabled children be the best people they can be. As of tomorrow Jude is on a strict diet and I’ll keep a diary to see if we can see any changes to his behaviour/attitude/general self. What’s the worst that can happen?!

Focus will be B6, magnesium, Omega-3 and vitamin C.

B6 helps anxiety, mood, appetite, red blood cell production, immunity and general nerve functioning. Foods such as bananas, watermelon, peanut butter, almonds, sweet potatoes, green peas, avocados, hemp seeds, spirulina, chia seeds, beans, rice bran, chickpeas, prunes, wheat germ, sunflower seeds, pineapple, plantains, hearts of palm, artichokes, water chesnuts, all squash and pumpkin, brussels sprouts, green beans, pistachios, figs, nutritional yeast, baker’s yeast (active yeast), garlic, sage, peppers, kale, collards are all high in B6.

Magnesium – Helps nearly every function of the body but particularly the immune system, muscle development and it can cut the risk of heart attack. Found in beans, nuts, whole grains such as brown rice and whole wheat bread, green leafy vegetables, bananas, tofu, fish.

Sorry this post is a bit random but I wanted to highlight the complexities of nutrition and diet and again justify my suggestion of offering the skills of a Nutritionist to all special needs schools.

Additional links http://www.theautismcentre.co.uk/articles/effect_of_Magnesium_Deficiency.html

http://www.foodforthebrain.org/nutrition-solutions/autism/about-autism.aspx

Introducing JUDE!

Ok this is a trial video and took about a million takes so please brush past all the ropey bits. Jude loves taking pictures of himself so we went a step further this time and hit record…

Anyway, here’s the boy.

Any questions for Jude then please ask and we will answer them in a day or so!

Making Allies

Such a fabulous day, I genuinely had a lovely day with the children today. Shocking, I know! This morning we just chilled at home and Jude did his funny little thing with building blocks…

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Look at those perfect lines! He moves the blocks around in a specific method only¬†inferred by Jude, it’s quite funny to watch. I’ll try and record him on the sly tomorrow.

Lunch was amicable, Emmeline even ate her food rather than just throwing it so that’s a vast improvement on the week and I’m convinced her calmer behaviour is due to the return of her siblings. She has been so happy today, it’s lovely to see.

Jude’s absence from this pictures is because he sits at the normal table to eat due to¬†his long, gangly legs not¬†fitting under this little red table any more!

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The main highlight of today was a party we went to this afternoon; the birthday party of one of Jude’s school friends. I wasn’t anxious about it at all because I knew it would be frequented by children similar to and familiar with Jude himself. The invitation itself was beautifully worded, stating that everyone is welcome and to just come along and have fun no matter what your level or comprehension of social situations¬†may be. There was an AWESOME disco dome for the children to play in, which is basically an enclosed bouncy castle with flashing lights and music inside. There was also an arts and crafts table, cake decorating and a face painter! Honestly, I was actually really excited about attending as I knew Jude would love it and the girls would have a wonderful time too.

The picture on the right is a bit blurry because Jude was bouncing up and down from everyone else’s momentum.

Jude’s always funny on bouncy castles. He never stands up on them, rather he sits (as demonstrated above) and just goes along with everyone else bouncing…thankfully Elsa was in there doing backflips so there was plenty of movement for him to experience.

They all had such fun and unusually for us attending a party en masse, I happily left Jude to his own devices knowing he’d be safe and not a hassle or in danger of annoying any body. I also didn’t need to worry about how people would interpret him and his mannerisms; it sounds insane but I regularly have apprehension¬†about how people will read¬†Jude’s rather forward approach to questioning complete strangers and have witnessed first hand him being blatantly ignored or given one word (i.e. “bugger off”) answers.

Overall, it was fab. Jude played for a while and then chose to sit and observe the party from the comfort of a couch on the side (next to the food table of course), Elsa made friends with a couple of girls and Emmeline happily bumbled around the room, smiling at everyone and watching the goings on.

What was also amazing to see was Jude’s reaction when friends of his turned up at the party. He regularly called people’s names across the room and shouted hello to lots of¬†friendly faces; I can only imagine the confidence it gave him. Normally, Jude is the person ignored at parties because of his somewhat peculiar habits but today it was all about him. Lots of parents chatted to Jude¬†and made him feel special. One boy he particularly likes in his class came over and gave him a hug and his mother and I had a chat and agreed to meet up later in the holidays so the boys can play in the park.

And this is something that also helps me. Making an ally, someone who knows where I’m coming from when I say I can’t wait for the summer holidays to come to an end, when I say how hard it is to try and see friends and family and how I prefer to avoid interactions because of the problems that may entail. We, as parents of disabled children, need to make allies and face our issues and basically the whole world, together. When discussing how hard things are with someone on your wavelength, it doesn’t appear as serious or even as horrendous and this normalising of our situations can only help everyone involved…or even those not directly involved. Are there many social groups for parents of disabled children? I certainly don’t know of any local to me but then again, I seem to be a few years behind everyone in the uptake.

So, I’m going to embrace the positivity of today. Thank you to the hosts of the party today; I hope everyone left with the same level of confidence as we all did. A x

They’re back!

I’ve missed the little buggers so much but thankfully tonight Jude and Elsa are home from a¬†week with their father.¬†I went to collect them at 5.30 and the look of relief on Elsa’s face was probably as apparent as mine. She’s such a home body and since being back has spent most of her time in her bedroom just moving things around and sorting all her bits and pieces out. She even took her ornaments off the shelf and cleaned them in the sink, dusted her window ledge and lined her shoes up neatly!

Talking of lining up, Jude is¬†on fire¬†with his obsessive habits. He got home, jumped out the car and ran straight into the garden…via the toilet of course, as he goes to the toilet literally every time he walks through the front door! Here he is lining up the go-kart, Emmeline’s pink car and Elsa’s battered old buggy. He then squeezed his green bike into the remaining gap and tried to decorate his perfect line up with two plant pots! Hilarious.

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As well as his linear¬†fascination, Jude has already asked me about twenty times if we can go swimming tomorrow and can we go to Granny’s for lunch and then when Joe got home this evening from work, Jude instinctively said “are you going to work tomorrow?”

And I’m sure it is instinctive. I’m absolutely certain that Jude sees particular¬†people and it triggers something in his brain that remembers which random comment or question he always says for that person. Grandad – he always asks if he can pick him up this week (not literally, he means collect him in the car.) Granny – he asks if he can come to her house for dinner. Stranger in the supermarket – “where are you going?” or “what are you doing?” When I see someone walking towards us, I quite often say to Jude “do NOT ask this person where are they going or what are they doing” and he laughs because he knows what he’s like!

But anyway, we have a very happy little Emmeline as her brother and sister are home. Here are a few pictures of them enjoying the garden this evening, reunited and content in their own little world again.

I love this first picture as it shows the children in their typical state – Emmeline with her football, Elsa hanging upside down and Jude on his bike!

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Happy weekend everyone. A x

Work and Qualifications

I’m not sure why I found the statistics so surprising but according to current research, 48% of people living in poverty are either disabled or living with a disabled person i.e. a child or spouse.¬†The research was undertaken by the Joseph Rowntree Foundation (JRF) but I read about it here following a news report on the radio:

https://www.familyfund.org.uk/news/half-of-people-in-poverty-are-disabled-or-living-with-a-disabled-person

Here are the included statistics:

  • 28% of people in poverty are disabled, including 310,000 disabled children.
  • A further 20% of people in poverty live in a household with a disabled person.
  • A quarter of working-age disabled people are in ‚Äėdeep‚Äô poverty, with an income below 50% of the median income, compared with 13% of working-age people without a disability.
  • Low pay rates for disabled people are higher than those for non-disabled people, at 34% compared with 27%.
  • Disabled people face higher costs than non-disabled people, with 18% of working-age disabled people unable to afford basic items because of their cost.

To not even be able to afford basic items is horrific. And whilst I cannot claim to have any tangible experience of living anywhere near poverty, I can understand the notion of struggling to find work because of having a disabled child.

The Joseph Rowntree Foundation is an organisation I studied frequently at university. It encompasses all the socialist tendencies I possess and I urge everyone reading this to look up http://www.jrf.org.uk and have a little read.

JRF1

 

JRF

I won’t lie, so far in life, in terms of financials I have been a lucky lady (though I have spectacularly made up for this luck in other areas!)¬†I have never gone without food, without being able to buy things I need, I have always been able to feed and clothe the children. To me, that means I’m one of the fortunate ones. We don’t have to weigh up what is the most important thing to buy with the last pound in my purse.

BUT, with a disabled child it can be incredibly challenging to find work that suits your lifestyle. Who can you leave your child with when you have to go to work? I know from¬†when I have tried to return to traditional¬†working hours, my immediate concern is who can look after Jude following¬†school hours or¬†during the holidays (a nightmare all on its own) and what can I do before work when I need to leave the house at 7.30am and he doesn’t get collected until 8.15am?

Recently we hired a nanny but financially it made no sense because I have never worked in a sector that pays very well (damn, stupid ambitions¬†of mine). Childminders aren’t a possibility because they typically have several children to look after and Jude needs more personal support than most children, so what is left? There are no after school clubs at Jude’s school at present so consequently, there are no options for me! If there are no options for me¬†when I have¬†a degree, post-grad qualifications, a relative amount of intellect and work experience, how is a parent with no qualifications and perhaps a mild learning disability themselves going to cope? It is transparently¬†obvious that they will not be able to return to work without in-house childcare or a very supportive relative.

Not particularly shocking but this piece of research by the JRF outlines how the provision of inexpensive childcare could reduce poverty in the UK https://www.jrf.org.uk/report/creating-anti-poverty-childcare-system

But just to make things that teeny bit more complicated…

Cheryl Ward, Chief Executive of Family Fund¬†suggests: ‚ÄúWe know that the cost of raising a disabled child can be¬†up to three times more than that of a child without a disability, and these costs have a substantial ongoing impact on families‚Äô lives and the opportunities available to them.‚ÄĚ

FANTASTIC!

Now following all this, I have been attempting to understand where my career could go one day, when I grow up. I have so many ideas of things I’d like to try but because of the above explanation, it isn’t always that simple. It was only a month or so ago I completed an online skills test to see which job would best suit my character. The prompt¬†asked me to choose the three words, images or phrases that appealed the most or that suited my personality most closely so I clicked through each page, concentrating hard to ensure my answers were accurate. I waited with anticipation for my results, thinking I would be given a wonderfully purposive suggestion of employment that I could pursue with the vigour I am so capable of. But what did it¬†propose¬†for me? Chef. Literally, that one word.

Chef?!?! Now whilst there is nothing wrong with working as a chef and in fact, it can be a fabulously rewarding and transferable occupation, I think for me, someone who has previously set fire to spaghetti and only today set the oven gloves alight (shh don’t tell Joe), Chef is not something I will ever be titled.

Bad chef

What to do first…

A short video with a few notes of advice for anyone finding themselves in a situation where they are struggling to work out what to do in regard to social care for their disabled child. These past few weeks, several people have asked me what the first things were that I did in order to find Jude the support he needs. I won’t lie…it hasn’t been a smooth run but I’m getting there and learning a lot as I go along! So here are the first two things I recommend you do if you are looking for council funded support. Please please contact me if you need clarification or feel I can help in some way. A x