So who has been to a tribunal?

I sadly suspect that this will be every SEN parent at some point in their lives, as we fight for access to services our children need and are entitled to.

Call me cynical but when we were refused higher rate mobility and then refused again at appeal, I couldn't help but think that they do this, just to see how many people won't bother to push it - and thereby save themselves some money - and meet their shrinking budgets...... When I got to the tribunal, the representative for the Department of Work and Pensions opened the proceedings saying that clearly our daughter was entitled to Higher rate mobility based on mental capacity (or rather lack thereof). He apologised for the stress this must have put us under. While I'm grateful that he said all this, I was left speechless that such an apparently 'clear cut' case had ended up at tribunal.

So either the decision makers at DWP are incompetent or there is something more sinister going on....

And what happens to the families who are 'on the edge' of coping or don't have the skills to push their case? These are arguably the most vulnerable and the system is completely and utterly failing them - and their children.

Perhaps the government motto for accessing services and benefits is or rather should be "Make it tricky enough and we'll save some cash"

There is a fine but important line between being thorough in assessing needs and deliberately over-complicating things to put people off....

My favourite is that every 5 years or so, I have to fill in a heap of paperwork confirming my daughter still has Down Syndrome and Autism.......... FFS!!!

Anyway, my top tip should you find yourself going up against a decision? Contact a charity for free legal advice. For us, the Down Syndrome Association were amazing (the guy from the DWP complimented their support work).

Good luck and stay strong x

Bitter Sweet and a blogger's responsibility

I've been quiet. My absence has been due to an inner turmoil about where to go with this blog and what responsibility I have.

On the one hand I want to be positive, promote all the good bits and talk about all my child's hard earned achievements.

On the other hand, I want to truly get people to understand how complex my beautiful daughter is and the daily challenges and future worries she brings.

And on my other other hand (didn't you know us parents of SEN kids, get given extra pairs of hands to help with all the extra chaos ;o)!), I want to provide optimism for other parents with dual diagnosed kiddies - I worry that I can't always do that, so sometimes opt for empathy instead.

The last worry about ensuring I provide hope but not false hope, is my biggest fear. I sometimes think 'bitter sweet' is a good term for life with Little I.

She brings such joy with her smiles and giggles, she brings glimmers of hope when she spontaneously signs and sometimes tries to say the odd word, but then it is lost..... leaving an underlying sense of sadness for those around her.

Then there are the practical considerations. My child has no safety awareness and a very high pain threshold with sensory seeking tendencies that can lead to dangerous situations. I joke about quick reflexes and constant 'fight' mode, but in all honesty - it's sometimes just plain exhausting.

Take comfort. I take comfort in the fact that Little I, for the most part, is a happy, smiley and despite of her autism 'engaged'. That said, her engagement is still vastly different to a child without autism - but you find joy in these small mercies.

Of course, every disability is different and for some children a life with work opportunities and independent living is totally achievable. Public perception needs to be continually challenged, to ensure these kiddies have the best opportunities.

Then there are kiddies like mine, independent living will never be an option, but keeping her safe, happy, engaged and thriving in her own way, is just as important as it is for any other person.

So, how do we retain our hope, energy, drive and optimism against the sadness, exhaustion and worries for the future?

........... answers on a postcard..........

Nothing lasts forever/ Extreme Parenting for Adrenaline Junkies

"Nothing lasts forever" This mantra has got me through a lot - with my nuero-typical children too, to some degree.

Of course, this applies to the good stuff, as well as the bad.....

My kiddies won't want to hold my hand forever, but also (I hope) they won't argue with me over what's for dinner for evermore...... They won't always want me to cuddle them, but then they won't always need me during the night......

With Little I, I had a sharp reminder of my 'nothing lasts forever' mantra this week. She's been poorly,  it's only a cold but she doesn't weather them well. What I realised however, was that it had been a 'long' time ('long' is a relative term) since her previous illness. There were many years when it was the norm for Little I to be battling a cold or chest infection, me on a bit of elastic to the doctors, countless antibiotics and frequent visits to A&E and stays on the ward. The latest illness has completely thrown us back into full-on nocturnal living. I was cast back very quickly to those days and relived my relief that those days are now mostly history. Of course new challenges come along and I don't suppose sleep will ever be great, but you embrace every new challenge, adapt and move forward.

To coin an annoying song.

I get knocked down
But I get up again
You're never going to keep me down


Albeit with love and support, some wine and if we're lucky, some social care respite (but don't get me started on that fast).

Hold on in there guys. This is extreme parenting. Get used to running on adrenaline at the tough times, and accept that these tough times can last some time........

Corporate Motherhood (with SEN)

Corporate Motherhood (with SEN)

Stepping from a Professional Job into Motherhood and then chucking in some SEN....... (Special Education Needs if you're not familiar with the latest acronym!)

BAU used to be daily defined work related tasks that didn't test your sanity, cleanliness or patience. Now it is school runs, packed lunches, homework, school paperwork, unfathomable sibling arguments, terrible sleep, hospital appointments, speech therapy, play therapy, occupational therapy, physical therapy, anyothertherapy, and lots of poo.

KSOR used to be the 'must do' business basics to keep things ticking over. These may have been repetitious but again generally never challenged your sanity, cleanliness or patience. Now KSOR is emptying and reloading the dishwasher at least 3 times per day, wiping lick marks off of all windows, TV screens and glass, clearing up small piles of reflux vomit that I stumble across on the floor, picking up numerous random objects from the floor (usually shiny things - cheese graters, sieves, pan lids etc), oh and lots and lots and lots and lots of clothes washing, drying and putting away. And - not to be forgotten - lots and lots of Caffeine for Mum!!!!!

Reports: I still deal with facts and figures - oh yes - plenty...... but now it is 'how many times do you have to hand a spoon back to your child at meal-times in a 24 hour period?' (really!), 'how many meters can your child walk without feeling discomfort?', 'How many words or signs does your child have?', 'how many times per night do you need to re-settle your child in bed?', 'how many times do you wipe their nose?', 'Is your child continent?' and so on and so on - generally lots of reports on things your child can't do and what help they need. So uplifting, huh?!

Negotiations: These used to result in business or personal benefit. Now? They involve whose turn is it on the iPad, how many chocolate biscuits are acceptable, how many more minutes before bedtime, what club you'll take away if the bedroom isn't tidied and so on. These negotiators are far more wearing than those of the boardroom, & typically I feel less successful (for the adult!).

And Business Development?? Well - researching therapies, convincing your GP & paediatrician of said new therapies, laminating stuff, visual time-tables, play-dates, introducing new things on trial and error basis (diet, therapy, supplements etc) & some more laminating just for the fun of it.

Would I change it? No - well - maybe a little! Heres to Corporate Motherhood with a splash (or rather big fat dollop) of SEN.

I do sometimes wonder how I used to fill my days......?

Epsom Salt - Natural Wonder / Poo glorious Poo

Occasionally you come across something that is soooooo beneficial to you and your family, that you want to educate every single person you meet - in the street, the school run, the bus (should I actually get one!), the toilet queue - everyone, everywhere!

I have to thank two amazing and inspirational ladies (hopefully they know who they are), for putting me onto Epsom Salts for a million different reasons! Why oh why did I not act sooner! This is the stuff of dreams. Its therapeutic and medicinal properties are extensive. I'm writing this blog, as the penny has just officially dropped in my worn out old brain. We have been giving Little I Epsom Salt baths almost every day for the last month and I have just made the connection with the fact that I have finally and successfully dramatically reduced Little I's constipation medicine.

She was sat chilling out in her bath tonight (hour and a half), when that old penny started to drop, so I grabbed my phone and started googling (is that an actual verb these days?). There it was in black and white - on top of the hundreds of other benefits of Epsom Salts, it clearly helps with constipation! It is absorbed into the skin and somehow encourages the bowel to absorb more water, which softens the stools and makes them easier to pass! Bingo!

There are heaps of other benefits - I have now prescribed Epsom baths to each family member for various ailments from insomnia to eczema, to more constipation to joint ache.

Epsom salts aren't actually a salt by the way - they're magnesium - a mineral many of us are lacking in.

I am quite literally turning into a granny, with all these old school methods that are working for us - changes to diet, Epsom Salts, essential oils - what's next?

It's only when you make little or no progress (or in our case, regress), using conventional methods, that you open your mind and explore alternatives - such a shame to have wasted so much time.

The only question I'm left asking is..... why on earth GPs aren't prescribing this ahead of movicol, lactulose and many of the other constipation drugs out there.... or instead of anti-inflammatories or steroids for skin issues. Definitely worth exploring nature's gift first. Such a shame.

Get 'googling'!!

Love each other x

PS - I feel I need to say something like ..... I am not a medical professional and can only speak from personal experience! Like me - you should do your own research before diving in - but honestly I can't see there is too much to worry about from having a bath. x

Jamie Oliver is my hero right now #sugarrush

I don't care what you say. Jamie Oliver is a hero in my house at present...... After watching his Sugar Rush programme on Channel 4 the other night, I took a decision, which so far, has had big ramifications in my house...... When my 8 year old sugar addict daughter got up, I told her I had a programme for her to watch......

It is not an easy watch for an 8 years old, but..... Several emotional outbursts, many tears and several runs out of the room later, my daughter is (at least for now) a changed girl. In defiance she still asked for Cheerios for her breakfast, which I gave her. She then proceeded to sit looking at them for 20 minutes. I then asked if she was going to eat them, and she said "no". She then followed this up with (& you could have blown me over at that point...) "No midnight feast at the sleepover tonight Mummy. I don't mind if my friend does, but no sweets for me". Holy moly. I have been going on and on and on and on about sugar for sooooo long. What I clearly should have been doing was showing her 6 year old kiddies having their teeth pulled out, adults having limbs chopped off and teenagers having to test their blood several times per day. My eldest really can't cope with gore (in fact she couldn't even cope with the flu nasal spray, let alone gore....).

This really motivated me - seize the moment and all that. We had 5 children coming over for dinner that night, so I set myself the task of feeding them a dinner that was entirely refined sugar free. - courtesy (again) of Ella Woodward and Deliciously Ella. I pulled together Hash Browns and Home Made baked beans - but I also added some fried eggs. The beauty of this, was that our Little I could sit at the table and eat exactly the same as everyone else. Little I, having been gluten, diary, sugar and lots of other crap free for over 6 months now. She's my little rock star.

And the verdict? Mixed to be honest!! Ha Ha!! Not a total write off though, with different kiddies liking different bits of the meal. I've since refined the hash browns to my kids' taste and they gobbled them down tonight.

We've sat down as family too, to each chose a meal from Ella's cook book. OK, so my eldest has opted for porridge, but the fact that she even looked at the book is a miracle (I've tried before with epic fail). So, way to go Jamie, a massive step in the right direction for us.

My only worry is that my eldest may realise that there is sugar in wine.......

Love each other x

So do we buy a puppy?

I grew up with dogs, and never thought for a minute that I would be 'dogless' once I had children. But, then I actually had children & couldn't understand for a second how you could possibly need another commitment, needy, poo machine! But then this happened

We have just spent a lovely weekend with family and their new puppy. What I was surprised to see, was the connection our Little I and this puppy had (now wishing I had taken a picture of them together!). They hung out. Puppy would follow Little I around , Little I would smile at him and pat him, and then every now and then, she would launch herself at him for a super big hug. They shared toys (I gave up on hygiene years ago), they shared licks (gross), & they shared some kind of a connection.

Little I was very calm all weekend, despite a reasonably unfamiliar environment & lots of people. She was smiley, content and sociable. Was this the puppy love working yet more magic?

So what's the science? Why the connection? I can see my next line of research forming......

Hmmmm.......... what to do.........

I already have 3 children that I have unsuccessfully trained (so no evidence to suggest I could train a dog), and I already have more poo in my life than anyone should have to experience. I'm also already torn in far too many directions, oh and dogs cost money (lots!) ....... but.... but.... but.....

Love each other x

A Yes Day is like warm chicken soup

Warm chicken soup is good for the sole, so they say. Well a "Yes day" is to your mental health, what chicken soup is for your sole.

Last Sunday I took my eldest out for a day in London - (big thank you to her wonderful auntie [my super sister] who arranged it). It was a day when I got to say 'yes' to my big girl all day long, and we were both buzzing  by the end of it (possibly from all the cakes eaten at afternoon tea, but I think more from all the positivity that day).

There were no exploding nappies, no vomits, no buggy versus stairs, no "can we find a suitable toilet?", no negotiations, no sibling arguments, no trying to please everyone, but.....

There were lots of
"yes, let's do it",
holding hands,
proper listening (not the half ear job I manage normally whilst chasing around after her siblings),
proper meal time conversations (not interrupted by the usual shrieking, plate throwing, toilet trips, food/floor recovery, endless menu conversations re sugar/gluten/dairy free foods and so on),
and lots & lots of FUN!!!!!

It's not to say that we don't have fun when we go out as a family - it's just it's very manic, I don't really focus on the fun - more the logistics, and eldest bean gets the least amount of attention - because her younger siblings beat her on age and disability. Top trumps.

I can't really put into words how good that day made me feel, and what a boost that has been. My daughter hasn't stopped talking about it either and is already looking forward to our next venture out - Charlie and the Chocolate Factory - again a massive thank you to my booking agent (best auntie/sister EVER!!!!).

Book yourself some 'us time' with your other child/ren - and if you have a super helpful friend or relative that's reading this - perhaps they'll arrange it for you - otherwise (if you're like me), these things just linger an epic 'to do' list.

Love each other x

The good, the bad and the ugly - holidays with our disabled daughter

I've just published  a post about how successful our recent holiday was - and it was. But.... then I started to think of all the things I 'accept' or work around, but which if fixed, would improve our experiences immeasurably...... I don't like to be all doom and gloom, so I've kept it short and balanced it out with 'The Good' :o)

The Good

Queue Jumps

Thank goodness for the queue jumps. I feel the death stare from some 'normal' families - or maybe it's just paranoia.... but, these queue jumps are a godsend! Queueing with Little I would be the most stressful and physically exhausting experience. I'm not saying it is pleasant for any family during these epic queues, but if you don't believe how much harder it is with a side of disability, please borrow my daughter for a day. 

And remember - many disabilities are 'invisible' - so please keep death stares to the minimum and smiles to the max:o)

Chatter

People talk to us. Isla is so charming when she wants to be, and not many people can ignore her smile or her approach for a cuddle. We end up talking to lots of people who we wouldn't have had the opportunity to without Isla. You really meet some amazing people, who really open up to you. On the flip side, you do feel like the centre of attention - what with that and the shrieking and cutlery throwing! Please just smile at us!

The Bad

Menus 

I am staggered by how much unnecessary sugar there is in food. I know I shouldn't be - Jamie Oliver has been talking about it for ages. However, now my daughter does not eat refined sugar, I am staggered to realise how much food has it, from the humble chip to a 'healthy' salad. Geez Louise - give us a break! There is absolutely no bleeding need to put sugar (dextrose) on chips!!!!! And salad dressings..... if you need them to be sweeter - what's wrong with something unrefined like honey?! It's just plain lazy.

Aside from being off of refined sugar, our daughter  Little I, also has to avoid gluten and diary. Now each in isolation is OK (not great, but OK), when you add the two together, you may as well go outside and eat grass -  that's the best offer you'll get. I started having dreams of conjuring some money so I could set up my own restaurant. It's not just the total inconvenience for Little I, but I've realised how unhealthy the food is that I give my other two children when we're out and about, and how conditioned they are to eating it. :o(

The Ugly

Toilets

Little I is mobile, so at least I can attempt to change her standing up - but this often results in an unpleasant shower for me! And.... if there is a movement of the number 2 variety, she needs to be changed lying down and often cleaned head to toe. :o( Now, where should I do that? She's too long for baby change facilities, so I guess I'll use the toilet floor....... How much would you like to lie on the floor of a public toilet?

So here is a shout out to all those local councils, planners, restaurants, pubs, theme parks, play parks etc etc - PLEASE sort out your toilets/changing facilities, and PLEASE give more thought to your menus (for the sake of all of us!!!).

Love each other x

2 out of 3 = Success?

We've just returned from a successful holiday. A huge sigh of relief. There were moments of chaos, as any family would expect, but over all, on balance, I think we all had a good time. A big bonus here - no A&E trips and no lost children. I'm not even jesting - it's a genuine worry!

When thinking back about everything, '2 out of 3' seemed to sum most activities up. In other words, mostly we could only achieve 2 out of 3 children enjoying any given task. Is this normal? Is this a success? Is this in-line with a 'neuro-typical family'? I think so....  Does that make us normal? haha! When deciding if 2 out of 3 is a success, I should point out that all 3 of our children are head strong, stubborn and inflexible.....

Out on the bikes, Little I had a ball (wind, speed, bumps, danger......), while son just sat in the toddler seat so enjoyed relaxing. 2 happy kiddies. Whilst,  eldest moaned lots as her legs ached.... to be fair, she did tackle some reasonable hills for an untrained 8 year old...... but still, it did ruin the tranquility of the New Forest somewhat....... Obviously our Facebook pictures show a happier story!

On roller-coasters, courtesy of Peppa Pig World. Both girls ecstatic - again, bumps, speed, wind, danger and thrills for Little I. Son however cannot handle such pace. One very cross son!

The little history museum... Eldest and son engaged, took part in, did interactive tasks etc..... Little I, bored to tears!

Splash park - now you think this would be a winner all round. Well, girls were in heaven, but Son had issues - didn't want his trunks and UV top to get wet and got cross with anyone splashing......

Oh well, the search for our holy grail continues - a family activity we can all enjoy. I suppose I could say soft play would get 3 out of 3 happy kiddies, but there would be two exhausted grown-ups supervising the chaos..... but I guess we always are..... 2 weeks soft play all inclusive next time......?

On a more serious note, going on holiday with any disabled child, adds in a lot more planning, effort, work, and worry. Whether it's a physical disability or a behavioural disability. For us, we need a really safe environment, secure garden, no gas cookers!, lockable windows, wipe down furniture and floors. It's lovely to have a break from the norm, but it's not really a holiday. You can't switch off when you have a Little I, and you usually have company all evening and from early morning (if not all night!). We were very lucky that she was mostly calm in the holiday home. She spent the first few days shrieking lots, which made eating out interesting! but other than that (and a final night wobble), she coped well with the change. She's an outdoors kinda girl, so all that fresh air suited her lots.

I must take a proud Mummy moment here..... Little I's big sister and little brother were magnificent with her. They didn't flinch at all her shrieking in pubs or restaurants (I could learn from them), and they had an "Isla alert" game, every time she tried to wander off or climb something, where they would enthusiastically shout "Isla alert, Isla alert, Isla alert", as they dashed to 'rescue' her. Little bro also put on his 'nee-naw' siren.... Very funny and super heart warming for me and hubby.

The Summer hols can be a tough time for parents with kiddies like Little I, so be kind, be friendly, be thoughtful xx

Love each other x

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