How Chocolate has helped my Autistic Daughter to Communicate

I always knew chocolate was magical & good, but I didn't realise HOW magical & good!

It turns out that I make a mean refined sugar and dairy free chocolate. Who knew?! It sounds like it couldn't possibly be tasty, but........ it's better than any commercial brand I've tasted - honestly! And, its biggest selling point?..... in the space of a week, my lovely Little I has mastered standing by the fridge (where the choc stash is kept) & signing chocolate, whilst making a guttural noise, which I can only presume is her attempt at the 'ch' sound. Oh blimey!

The magical powers of chocolate, hey?!

What's more amazing? That my daughter has mastered (& so far retained) a new sign, or the fact that dairy and refined sugar free chocolate is actually tasty?!

I can't take all the credit for the chocolate - I'd like to, but I would be lying if I didn't say it was inspired by Ella Woodward of @DeliciouslyElla. Her recipes are a lifesaver.

www.deliciouslyella.com/pure-chocolate/

So, now I have a new motivational tool, how to use.....?

So diet? I know the medical profession will not support dietary changes to help Autism, and I'm not about to start quoting studies on biomedical stuff (although there are many)...... What I will say, is that 6 months ago, we took Little I off of gluten, dairy & refined sugar (& all artificial crap), & our little girl has flown. Eye contact through the roof, instigates social contact with friends & siblings, lots & lots more vocalisations, an interest in TV (& laughing at funny bits), some co-operation in adult led activities (previously none), less hyper (but still busy!) and VERY, VERY HAPPY. This is our experience, and such has the improvement been, that I felt I needed to share. If another parent (well several actually) hadn't shared their knowledge with me, we wouldn't have known about the diet option & Isla would have missed out on all of this progress.

As the saying goes, "The proof is in the pudding"

Phew!

It wasn't as bad as I was expecting. We only lost 2 hours of support. 2 hours we well need, but at least not all of our support. This was the outcome at panel today, where faceless people who (as far as I can tell) have no real idea of what it's like to bring up a disabled child, push a budget around, and make decisions that affect your life - the infamous panel - you can't see them, talk to them, explain to them, they are the go-to excuse for all decisions - "panel decided, sorry".

The reason for the cut? Surely it's because they think our family can cope with less support, but no. The reason is a budget cut - never mind what the family and child need to keep them functioning, in good mental health and god forbid 'thriving'......

It's a strange thing, admitting that you need help and going to 'the state'. I did not enjoy it one little bit and I hate the intrusion that it brings to our life. However, I endure it because your children come first, and direct payments provide us with sanity and balance, where I can pay someone to look after Little I for a few hours, so I can do mundane things such as homework with my neuro-typical kiddies or more fun things like go to the park with all 3 children.

There are many, many things wrong with this process sadly. It takes weeks if not months to get a call-back after your initial referral (either self referral or GP), it then takes weeks or months for an assessment, it then takes weeks or months to get to panel, which almost always results in a 'decline' or a token '2 hours'. You then have to appeal this - and go through all the hoops again. This would be energy zapping for most people, but for people who have mostly reached 'breaking point' (& hence the request for help), this is disastrous and can very sadly be tragic.

Given our economic state, I honestly don't know what the answer is, and I dislike being negative. I just want to highlight something that I know is affecting many, many hundreds if not thousands of families in the UK.

Sorry, I feel like I've been on a bit of a high-horse here. My family are fine right now, but I worry for the future with cuts being made everywhere (we are now off to tribunal to challenge a mobility decision - more work :o( ) & I worry for other families that don't have the ability to fight.

The support you get from other parents in the same boat and patient, understanding friends, is what keeps us going (along with the large glass of wine and chocolate).

On the positive side today, our Little I waved at her Nanna, when she said goodbye today. Little things mean the world :o)

Love each other
xxx

What it's like living with Isla

Living with Isla is fun because you get to help her and make her giggle. But she is so cute and playful. You can bounce and spin her around and when you put her down she might walk up to you for more because she likes it! She also steels peoples  food at school when she's on a stricked diet so she's not allowed to eat sugar, dairy and gluten. 

and that's what it's like living with cute little Isla.

by Isla's big sister, aged 8

Big Sister's own, unedited words

How to survive the Holidays….  DS/ASD survival guide

OK, so I’ve been through several of these Summer Holiday things now. They have generally been nothing short of utterly disastrous and entirely exhausting (for me!). One of them even drove me to the edge and dangled me over. 

And so, with another one looming, I have come up with my best attempt at a survival plan. You can dive on in with me, or you can wait for my review of success or failure in September!

So, how to split yourself 3 ways, when one of your children requires 1:1 care for her own safety - let alone for her to engage with activities and have fun….. Hmmm

First Idea: 

Time-table the day. Rather than one long stretching abyss of a day, I’m going to do blocks of time and decide on how each one will be filled. e.g. Pre 10am, lazy get kids ready, bath, breakfast, Kid’s TV (yes - no guilt either). 10-12 Garden play/ planting/ sand-pit - only torrential rain will thwart me. 12 - 2pm lunch and chores (kids will love that one) 2-4pm Reward (for Chores) - trip to park (if I have a carer for little I) or arts and crafts (god help me). 4-5pm dinner. 5-6pm TV - oh yes, more TV. 6-7pm another bath-time! 7-8pm wrestle the neuro-typicals to bed. 8pm onwards - follow Little I around, picking up after our little hurricane has finished whizzing around.

Of course, whilst all this is going on, I will have my beady eye on Little I and my reflexes poised to divert her from danger!

Second Idea:

Book lots of help!!!! If you have family who can help, then diarise them in, so you know when your next bit of help will be - always have a goal! I am only fortunate enough to do this, as I currently get direct payments to pay for a carer. Social Care are currently trying to reduce or remove this from us, at which point I will cry uncontrollably. If you can’t get help, at least book your little conundrum into a holiday club to give you & any siblings a breather.

Third Idea:

Get a job!! I am thrilled that I have returned to the grown up world of work and for two half days each week, I will escape my prison and be a normal human being, who does not have to hear the word ‘Mummy’ every two seconds and who does not have to clear up poo. 

Fourth Idea:

Book play dates. So it’s difficult/impossible to leave the house with our kiddies, so…. book playdates that come with low maintenance kiddies and great friends that bring wine :o)

Fifth Idea:

If you have a partner, INSIST that they take time off.

Sixth Idea:

Ensure your fridge is fully stocked with wine and chocolate

And finally take a deep breath. 

Although this is tongue in cheek, I know that genuinely this is an incredibly stressful and difficult time for all parents with SEN children. You have to dig super deep for that extra bit of strength and resilience. Don’t beat yourself up if your child’s therapy takes a back seat. There is only so much we can all do and ultimately our own good mental health is essential.

Love each other x

#Holdontohope 

In this world of ASD/DS, we can spend months, sometimes years facing no developmental progress or even regression in our child’s development. From 2.5 years old until 5.5 years old, our Little I had regression after regression, losing her speech, her sign language, her eye contact, her ability to play, whilst she gained more and more difficult behaviours and sensory processing challenges. It was like someone had stolen our daughter and replaced her with a stranger. Heartbreaking. Absolutely heartbreaking. This was a very tough time in our lives - our family reached breaking point…..

Roll on another 6 months, with the introduction of dietary changes and the continued enforcement of an Intensive Interaction underlying approach, and WOW! 

Little I is just brimming with smiles, hugs and eye contact right now. Amazing how much good eye contact and a smile can motivate her Mummy! I’ve gone into full speech therapy resources mode. I think the laminator wants to move out for a break! 

We have PECs cards stuck all around the house, routine cards for everything. My other kids now seem to think they can’t get ready for school or go to bed without their own visual time-table. The whole house has gone plastic!

Little I will now (if we persist) give me a ‘drink’ PEC when she’s thirsty! THRILLED. Her understanding (I think), has always been there, but her ability or desire to ‘co-operate’ vanished when the autism, appeared!! So……… this (hopefully) signifies a huge turning point. :o)

Without wanting to preach, her progress with eye contact, engagement and her being more and more ‘present’ (instead of in her own world), are down to 3 things:

1. Intensive Interaction - what a life saver

2. A gluten, dairy, refined sugar and soy free diet. I know, I know - mixed reviews, feedback and a stubborn refusal by the medical profession to endorse - but I firmly believe that this has made a HUGE difference. Ella Woodwood of Deliciously Ella has been a godsend in keeping to this diet.

3. AMAZING support workers at school, who work so closely and co-operatively with us - I know how lucky we are.

She’s tolerating social contact and even occasionally initiating it with her peers, by tickling them. This is SUCH A BIG HUMUNGOUS deal! Of course, things can and do turn on a knife edge sometimes, but we’re learning to enjoy the Highs as much as possible, and take comfort during the lows, that at some point, eventually, we’ll experience another high, when a new milestone is finally reached. :o)

In the unprompted words of her 8 year old sister: “I love children with Down Syndrome, especially if they have autism too. They are soooooo cute. Well, actually the autism was a bit of a pain at first but now she’s cured, well kind of cured it’s great because she cuddles and plays with me again”. Couldn’t have put it better myself, although I wouldn’t use the word ‘cured’!

Love each other x

Midnight Ramblings & hob nobs

Just settling in for one of our all night sessions. By midnight, I finally accepted our fate. Up until then I had been pretending sleep was imminent and it was putting me in a bad mood, as it was continually denied! I have now had a perfect cup of tea and half a pack of hob nobs, so bring it on! (Sob sob!).

Oh the irony - we spent today in London with one of the countries leading behavioural sleep professors. Amongst other things, we were advised to triple Litle I’s melatonin dose, so I had high hopes for tonight - when will I learn?! Hold onto hope, hey?! Well, tonight the triple dose helped her sleep a whopping hour and forty minutes!!

Small mercies though - she has at least started to watch TV (well Ice Age 3 - nothing else is toleratated) after 2 years of refusing to watch anything. This sadly doesn’t stop the inappropriate climbing, window licking, object throwing and rocking etc as she is an efficient mutli-tasker in such matters, but does at least seem to keep madam busy in one room and less likely to wake the other monsters up! 

At some point tonight, I’m supposed to be securing a sleep probe between Little I’s big toe and a machine. I can’t do this until she is asleep, and to be honest, at that point I will beyond ability and too scared of disturbing her. Night one of two day study - epic fail :-(

The lovely bits today - Litle I loved our train rides in and out of London. She was fab - she actually sat still (ish) - I think the train motion provided therapeutic feedback for her. We also both thoroughly enjoyed walking the south bank from St Thomas’, all the way back to Liverpool Street. Love London baby.

Anyway, enough ramblings. Must be time for more tea….. And hob nobs?…..

So, for those of you in the know, Open the door, get on the floor, everybody walk the dinosaur!

Happy caffeine and hob nobs to all you other night warriors out the there! 

Love each other x

Friends like these

Friday was a tough day - I eluded to it in my last post. Lots of poo related saga, minimal sleep, a broken car, a broken washing machine, a broken me, you get the idea…..

What tough ‘shitty’ days like this prove however (if you pardon the pun), is what lovely friends I have been fortunate enough to collect over the years. Without even asking, I had washing taken, I had the car battery fitted for free, I had two different friends take my other two children off my hands so I could sort Little I out, and I had someone willing to babysit my poo machine daughter, so hubby and I could get out in the evening. A lovely mental break! I don’t think I could ever articulate how much these gestures mean - particularly the offer to babysit - I’m well aware that my lovely daughter is a full hands-on evening experience!

Two days on and poo seems to be ‘under control’ - or at least as good as it gets! Little I remains extremely happy and we are currently enjoying very interactive singing sessions, where I sing (badly) and Little I rocks along with a big smile. This follows on from a fab live music event on Saturday, where Little I rocked it out to her heart’s content with her wonderful, wonderful carer - something we would be unable to do without 1:1 support for her.

Isla rocking it out at our local Music in the Park 

This takes me aptly onto one of our current battles. The pressure on Social Care budgets is a HUGE problem. Little I gets 8 hours per week for me to pay a carer. I’m extremely grateful for this, but to be honest, it’s far from enough when you have a child with no safety awareness, no sense of danger, no language, incontinence and so on. Sitting down to do homework with Daughter No 1 or bath my son etc are tasks that need my attention (let along cooking, cleaning, reading with the kids and so on and god forbid I might want to take them out for the day in the holidays…..), yet you can’t take your eyes of our whirling durbish, for as we recently discovered - she may be tucking into a balloon or some Hama beads, or whatever takes her fancy….. or if you’re out and about she will have wandered into a road if given 30 seconds….

Despite this, I have now been advised to expect these hours to be cut at our next review. I’m sadly not a unique case - this is happening to everyone. :o( I’m absolutely gutted, as these hours are the difference between us coping and not coping :o( I’ve been told I can appeal - but it’s yet more work and yet more ‘list everything your child can’t do, blah, blah, blah’ - so extremely depressing.

Anyway - this isn’t meant to be ‘poor me’, I guess I just want to highlight factors important to families like ours and maybe, just maybe my posts will reach someone in a position to step in and help one day…..

My biggest message here though is….. You can always be a great friend - even the tiniest offer of genuine help, whether it’s logistics (club lifts is a biggie for me!), a good listener, or you turn up with your cleaning gloves (I would never be offended by the way! ;o)), know that your gesture, big or small, will make a massive difference.

Love each other x

highlowfastslow:

That’s life with a 6 year old daughter who has Autism and Down Syndrome. Add in two siblings and it’s a rollercoaster of HighLowFastSlow - although my head runs at Fast setting regardless of what the little people may be doing….. I think so much, that I fear I over use my brain and it may age prematurely as a result! Poor hubby!

This is my first and maybe only post - who knows, let’s see. I have lots on my plate already. 

I listed little I’s first disability as Autism - the hidden disability. This was intentional, as Autism is by far her biggest challenge. Her Down Syndrome is what you see when you look at her, with her beautiful almond eyes, but it is her autism that brings most of her quirky (challenging/disruptive/dangerous/exhausting) - let’s just call it quirky… behaviour…. Not to say that Down Syndrome doesn’t play its part.

So, a day in the life…. This morning’s task has involved my sifting through poo to identify non-food consumed items. So far I have found a deflated balloon (now re-inflated with poo) and some small rubber squishy things….. She’s at home, as there is only so much clean up a school can be expected to do!

My second morning task has been to painstakingly remove all possible things she may decide to chew or swallow - not an easy task with a 4 year old and 8 year old also residing here…..! In fact, it’s an impossible task, but you’ve got to try…..

It’s not all all poo though….. (perhaps that should be the name of the blog?). There were some wonderful cuddles and amazing eye contact this morning - something all the more precious given her autism - we really have come leaps and bounds on that front (Intensive Interaction all the way), what remains are her ‘isms’ or ‘stims’ (repetitive actions to calm herself) and her rather large sensory challenges - for little I, it’s mostly about sensory seeking, so if you can bounce on it, climb it, stroke it, eat it etc, she’s there! Eye’s peeled and reflexes faster than lightening……….. Let your guard down at your peril!

So what’s my purpose? I’m not sure (on many levels, ha! - but let’s focus on the blog)….. Perhaps to enlighten people on the issues faced when these two disabilities collide. Perhaps some weird therapy for me or perhaps to let other people in my situation know they are not alone. It’s good to laugh at the craziness but it’s also OK to cry sometimes too.

Our children are precious, no matter what they ‘come with’, and by children I mean those fully grown too.

Love each other.

xxx