Absolute Shambles

I’ve seen in the media this week (link to Carrie Grant) that there have been discussions in South West London to no longer accept referrals for assessment and diagnosis of Autism Spectrum Disorders.  Even typing that sentence feels wrong.

I cannot get my head around this.  The only children who could be referred are those with an additional mental health condition the likes of ADHD or depression.

Reilly is autistic.  He isn’t ADHD, he isn’t depressed.  Where would that leave us.  No referral, no diagnosis, no help, no support, no special school place.

It has to be financial, I cannot think of any other reason but I can assure you that the knock on affect for these families will have severe repercussions.  We all know that early intervention is crucial.  You need to open doors quickly and access whatever help is available.  Reilly simply couldn’t be shoe horned into a mainstream school, I knew that before he attended his afternoon visit to nursery that they couldn’t handle him and I was right.

Reilly didn’t want to sit nice on the carpet with his milk in a carton that he couldn’t bare to touch and listen to stories. He wanted to be in playing with trains but thats only allowed if you have a band on and theres only three bands allowed at any time in each area, he didn’t get it.  He didn’t fit and I wasn’t going to make him.  And oh lord he’s still in nappies!!

We were lucky enough to have a Sure-Start nursery a bus ride away where the staff were amazing and helped me so much.  They were an emotional crutch to me at times. Times when I couldn’t leave him, times when it took me 2 hours to get him there instead of 20 minutes. Times when Id had 2 hours sleep and happy times when he ate the garlic bread.

Guess what happened to that Sure-Start Nursery?  It was closed.

This coincided with Reilly needing to start big school.  No diagnosis, no special school and an entitlement to 5 hours per week support.  I say again 5 hours per week.

With Reilly’s diagnosis he went to panel for them to decide where and how Reilly should be educated.  There were zero spaces available anywhere with any type of specialist provision available.  He would have to go into mainstream school to “prove a point” that he couldn’t remain there.  Imagine using your child to prove a point to get them the right education they are legally entitled to.  The poor teacher who chased Reilly for one week around the school between 1.30 and 3.15 must have been near a breakdown at the end of it.  We proved a point and then threatened action with the council.  Tadaaaa we were offered a place at an excellent school for Reilly, not the right school according to all of our professionals but better for him than mainstream at this point.  Reilly spent a year there and came on leaps and bounds he was then moved to his current school.  It’s exceptional.  It’s right for him and us.

Would he be here without a diagnosis?  Absolutely not.  Would I have had that breakdown that I teatered on the edge of so often – I can guarantee it.

So is it about money? Is this the start of privatisation?  There can’t be any other reason.  How many people can afford to go private for a diagnosis?  It’s absolutely terrifying.  Will it roll out further?

Our lives are hard enough, we need support just to lead semi normal lives.

Mental health services are being cut left, right and centre. Mental health problems on the rise and I can assure you it will get worse if these plans go ahead.

 

 

 

The long walk home

What an eventful afternoon!  I decided I would venture out with Reilly and Ellis to the skate park with the scooter, a football and a camera – just in case.  You never know what you are going to get when I’m out with these two and I hate to miss an opportunity.

I was a little bit nervous because i’m on day two of taking probiotics (see yesterdays blog) and can tell you that I would rather not stray too far from a public convenience of which there are none at the skate park and also because Reilly had to be given a suppository after school because he is still withholding his poo’s.  Had the potential to be a really shitty trip out, pardon the pun.  TMI?

Anyway sun was shining and within 1 minute of entering the skateboard this little dude called Billy who was there with his Dad comes to talk to me and tells me he recognises Reilly from school.  He doesn’t attend Reilly’s part of the school but he tells me he’s seen him around.  I tell him he’s autistic and he says ah yeah I know about that and then tells me he has friends who have special needs and it’s no biggy.

What a breath of fresh air man!  I talked to his dad about how fabulous the school is and how great it was to see such accepting attitudes.  Billy pushed him on the ‘thingy’ and they even high fived before Billy left.  My heart swelled a bit I’m not going to lie, more of this please.  I’m so happy I had my camera.

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Reilly took great pleasure in recreating the scene of me falling off the roundabout thing pictured above again and again.  I think he was winding me up and I love that too, more snippets of his character coming through.  If he could talk I know he’d be full of cheek I can see it.

We decided to make our way home after a few new ways of riding his scooter down the ramps.  IMG_1826.jpg

Time was getting on and we’d had no tea so straight home? No Reilly wants to walk the huge long way round.  Ellis deserts us for the quick route and Reilly decides not only is he not going the quick way he also isn’t riding his scooter and I should push him.  My phone dies just as I take out my phone to ask Shane to come and get us so 1 hour later I arrive at my Mam’s which is en-route.  We stop off for nutella on toast (Reilly) and then attempt the last 5 minute walk home. Nope not happening Reilly just lies on the pavement like a cement starfish.  Eventually my Dad rings Shane to come and collect us because it is impossible to move him the final 300 metres and it’s now 9 o’clock.

Nothings ever simple is it? Look at those beautiful photos though, he’s certainly worth it! (No photos of big bro Ellis were permitted to be used in this blog, I think its an age thing!)

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A gut feeling

Like most parents of autistic children I read, a lot. I read other parents blogs, scientific studies, general books on autism, self help books, how to use the toilet books, special needs rights books, communication books. A lot of books.

There is one thing that I keep seeing – in forums, studies, blogs, even a TedTalk and that’s about how prolific the link between the gut and the brain is. I decided I would delve deeper after I watched the documentary The Truth about Sleep, in which there was a lot of talk about pre and pro biotics.  If you don’t know probiotics are good bacteria that lives in our gut, prebiotics is a fibre that we can’t digest but allows our probiotics to flourish and fight the bad ones.  If you do take time to read more on the subject you will see the gut/brain/autism study where the mice became more social, less anxious and displayed ‘less autistic behaviours’.  There are parents actually doing fecal transplants to change gut microbes in, I shit you not, crapsules.  I’ll leave that there, it makes me feel a bit sick. 

In the documentary it talked about people who get less than 5 hours sleep per night, that’s me and has been for as long as I can remember and they’ve found not getting enough sleep can cause changes to our gut bacteria.  We have trillions of micro organisms living inside our intestines that keep our bodies running along. When it’s thrown out of kilter there is mounting evidence that it links to IBS, allergies, obesity, diabetes, heart conditions, brain function and neurodegenerative diseases. It will also make you crave sugar PMT style.

A recent study showed that getting less sleep changes the levels of specific strains of bacteria. The amount of certain types of bacteria decreased by almost 50 percent ― and that was after only two nights of not enough shut eye.

I’m no science teacher so I’ll try getting to the point.  

My beady, black tired eyes lit up like fireworks when I read that pre and probiotics can be beneficial when targeting anxiety, depression and OCD.  My threesome. So off to Holland and Barrett I went today like a medical encyclopaedia looking for a new chapter. 

I am the guinea pig. I took my first capsule tonight and will monitor daily if it makes a difference. I will be honest you can be assured. Could this help sort out the restless, anxious, biscuit craving, foggy brained obsessive fatty that I’ve become?

 Maybe not but let’s give it a shot if it helps with my anxiety, sleep, sugar cravings, stomach pains and allergies it may become a permanent fixture in this house.   I’ll report back on this in a week 😀🤞🏼.  I’m off to sleep. 

Ps not on commission, not selling anything. 

Mental threesome 

It’s mental health awareness week so thought I’d do a post. I’m pretty vocal when it comes to discussing mental health and I wish more were too. 

I have a threesome regularly – depression, anxiety and OCD. Depression and anxiety are of equal shittiness, OCD the king of the castle.  OCD is vile and it’s hard to explain.  I don’t spend time lining up things and making sure the house is tidy or washing my hands.  I do however get overwhelmed with ridiculous thoughts. Like a broken record. They are exhausting and it takes every ounce of energy to deal with it.  It’s like anxiety on steroids, the what ifs? Become amplified WHAT IF’S? Harder, better, faster, stronger as Kanye would say. 

Anxiety is an everyday occurrence. I’m not plagued 24/7 like some people but parts in everyday will be spent with pins and needles coursing through my limbs accompanied by a loud pulse, a foggy brain and an urge to get out of wherever I am.   It often greets me on waking like an elephant sat on my legs.  When anxiety is high OCD is worse, OCD in turns feeds anxiety; see my hamster wheel? I wish it would f@ck off.

Depression – if you know me you know my story it has ups, it has downs and it has some wayyyy downs and my depression I believe stems from my past, my genetics and the two beauts above.  They go hand in hand in hand And it’s hard sometimes to function “normally” I should add lots of my friends and lots of my family suffer from depression, anxiety, some even from OCD too. It’s beginning to feel like the norm.

We have to be brave enough to talk about it though.  I talked about my OCD and found 5 people close to me who were suffering too, in silence, not anymore. 

ASD is usually accompanied by depression, anxiety and often OCD in some form.  To think of Reilly, or any of my kids ever suffering like I have in the past breaks my heart in two but I’m armed.  Armed with knowledge, empathy, experience and understanding.

The thing that works best for me is distraction, I keep busy.  It’s a well known fact that anyone suffering from bouts of depression feel worthless at some point.  My charity work not only helps others but it helps me, there is a method to my chaotic life madness – it actually helps me too.  

I’m mindful, I listen to podcasts about anxiety and learn from others, I read up on alternative therapies, I take meds, I’ve had counselling. 

I’m defo 1 in 4 have been for longer than I care to mention.  You wouldn’t guess it 90% of the time as I’m a great pretender, we all are. With mental health problems rising rapidly in kids we need them to understand mental health issues,  how can we do that if we suffer in silence? 

#mentalhealthawarenessweek #itsoknottobeok 

Take a break. Will she or won’t she? 

I’ve done something outrageous! Maybe not outrageous to you but to me it’s huge!

I’ve booked to go to Portugal in June with a group of girlies, for 3 days. The original plan was they were going in a log cabin in Northumberland and I thought I can do that for 1 night, it’s near, I can come home if I need to but it’s changed because for £44 you can fly to Portugal and I really, really, really need a break. Did you know I was tired? I may have mentioned it.

Since adding myself to their flight 2 hours ago I have almost convinced myself that I shouldn’t be going.  The what ifs are horrific.   but you know what I’m working really hard to turn those into so what’s.  I have a really loud defence and prosecution going at it in my head that’s sounds a bit like ….

Prosecution – Members of the jury I ask you what kind of mother leaves her non verbal autistic son for a jolly abroad for 3 days (actually 2 as arrive at night). 

Defence – not really a jolly, she’s boring as f@ck and only drinks tea.

Prosecution – but still her place is at home.

Defence – agreed but she’s tired AF and feels like she’s lost her identity and wants to be responsibility free for a couple of days.

Prosecution – she’ll never do it she has more panic attacks than an anxious pilot.

Defence – true but she also has diazepam.

I really want to go.  I know the people who are going get me and understand my situation.  Is it so bad to want to go away for a couple of days?  Shane was practically booking it for me, I think he might want rid of me for some peace. 

So for now I’m going, defence is winning and no one knows more than my nearest and dearest how hard I graft behind the scenes with Reilly and many other aspects in my life.  Will I come back refreshed and a new woman or a bigger wreck than before? Answers on a tacky postcard.

Is it too soon to pack? 

Homebird 

We are back home after our little trip to Warrington.  One thing that is clear is that Reilly likes to be at home. He lasted just an hour and a half in Gullivers World and wanted to be back in the car.  We managed to get him upto the room with much bribery and he made a million escape attempts.  One resulting in us both getting locked out the room.  He moves the bags towards the door whenever we are away, like preparation of going home.  I hate that he can’t vocalise how he feels.  

Anyway PJs on, 4 packets of coffee, sugar and tea bags opened and ruined, one near miss with an overflowing bath and a close shave with a hairdryer and a kettle, melatonin taken and he was asleep by 8.30 and slept until 6am where upon waking he ran straight for the door but unlucky for him I was two steps ahead and had secured it with the belt off my jeans.  I would never have slept knowing he might have woken during the night, visions of Reilly on the log flume at 3am in his jarmas. 

For 3 hours from waking up at 6am Reilly galloped back and forth from door to window only reprieve was an odd ten mins here and there to watch a Thomas episode. We packed up and checked out to go get breakfast in the diner and a few hours in the park because our lives are simple like that. No. Reilly got in his car seat buckled up and WOULD NOT come out, he wanted to go home.  Ellis wanted breakfast and to go in the park and which ten year old wouldn’t want that? On the realisation that we were most definitely not eating or playing together as a family we went our separate ways, Shane and Reilly off for a drive and myself and Ellis into the park for some fun.  Priceless that time together. 


Two hours later and Reilly hasn’t budged from his car seat and sat quite content with Shane in the Nerf car park. His face beams when he realises he’s on his way back. 

Relaxing night away? Not in a million.  I’ve said FFS and turd more times than I care to admit.

Not sure a trip on his beloved Jet2 or Thomson planes will be coming anytime soon.  It’s sad that we don’t get to do things as a complete family unit and that things that we take so much pleasure in cause Reilly so much anxiety, if he were an only child it would be easier I’m sure we’d probably just do whatever makes him happy with a slight nudge out of his comfort zone now and then but he’s not though he’s Thing 3 and at this moment we are really struggling to keep the kids balanced.  

How do you manage? 

X

Pablo

Soooooo big day came today and we left at 7am this morning to drive to Lymm between Manchester and Warrington.  Took us 3 hours and the kids were perfect, no escaping car seats and we overruled Shane to get Capital on instead of radio 4 so quite a pleasant jaunt down the beautiful scenery of the A69. 

Lymm is really pretty like a Midsomer Murders type of place, leafy with enormous houses. When we arrived at The Animal Behaviour Centre we were greeted by Greg.  Pablo lives with Greg and his partner and has done from being tiny.  

Reilly was unsure.  He didn’t want to go in but he had just travelled 3 hours after being woken up at 6am and was in a strange setting with people and dogs he’s not met before so we weren’t one bit surprised so he was allowed to just wander and skirt the outsides of the Centre until he was ready to move in a bit more. Ellis on the other hand was straight in. 

When Pablo has his smart red Autism Dog jacket on it’s strictly business so no playing, no petting etc.  Jacket came off and Ellis played for an hour learning commands and throwing Pablo’s toy.  I’ve not seen Ellis this happy in a long time. 


We moved inside to chat about plans with Tina who owns the Centre. She’s a highly accredited trainer and believe me when she says the dog comes first,  she means it. We chatted about what we want from Pablo and my thoughts on that are unchanged. 

A) Anti-Bolt – will anchor if Reilly tries to run

b) crossing – like a guard, safety from people and hazards

c) meltdowns and pressure – self explanatory these amazing dogs apply pressure to increase security and calm the person. 

Pablo already rings a bell to go out and is trained to a high standard already.  He can even find your keys if you lose them!! He can be trained to lie with Reilly until he’s asleep and then move to his own bed. 

I’m in awe of these beautiful animals and the people who put so much into training them. 

Pablo and Reilly have to be a match. Tina, Greg and Lucy must be happy with us and our set up as much as we must be happy with Pablo.  Reilly did eventually move inside and played alongside Pablo but not directly but I’m 100% confident that will come.  Everything with Reilly takes time, patience and understanding.  This is no exception. 

I’m really happy with our first visit.  This takes a lot of effort on everyone’s parts, we need to pass training ourselves with Pablo and Ellis will have an active roll in there too.  We will be back very soon to see Pablo again and move forward. 
As a treat we came to Gullivers World in Warrington, it’s red hot and there was about 20 people in there so perfect way to round off the day.  I’m now counting down the minutes until Reilly gets his melatonin. We’ve already had 2 extra keys and at least a dozen escape attempts. 


Watch this space for more Pablo updates ❤