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