Desperately Seeking …..Sensory

I’m not one to moan (well alright, maybe just a little bit) 🙃BUT Wow these twinnies are hard work lately!! Me and Daddy Maddog are teetering on the brink of insanity….. so close to being pushed over the edge but somehow we survive, day by day!

All 5 of our kids are extremely Sensory Seeking! Whether it be verbal stimming, high pitch screaming, shouting or physical movement to express themselves. It might seem odd to an outsider but this is what they need to feel good. It’s their outlet so we need to let them carry out most of these actions, not try and stop them completely (within sensible reason of course).

With the little ones 🙈🙉🙊 ….. the autistic traits are showing through loud and clear now. The constant repetitive actions and movements are wearing. Almost unbearable at times as both twins won’t take no for an answer. It is is disheartening and so bloody hard but their need to climb is relentless and ritualistic. Bam Bam’s favourite trick is shimmying over the babygate… quicker than a speeding bullet he’s off up the stairs or into the kitchen. We have to lock the front door as he tries to bolt and escape at every opportunity. He’s a clever little thing and grabs chairs or slides furniture to help him get to where he wants. He gets a leg up on the washing machine and next he’s walking along the kitchen counter emptying the cupboards or climbing inside the fridge. Pebble’s loves stomping around on the kitchen table (with one welly on) and even gets on top of the bureau!! Her favourite lately is climbing up to the tv (on the wall) using a shelf. Then standing up there trying to immerse herself into the picture.

All 3 little ones walk along the backs of the sofa along the window sills, radiators…balancing dangerously on the edge. Our kids have no sense of danger and just crave this constant motion.

We take them down from the high surfaces a million times a day (no word of a lie)!! Repeat the same thing NO but alas they are still non-verbal with no understanding or comprehension of how they could hurt themselves. Their need for sensory input from climbing or being on their head upside down is obsessional …. they need these movements to feel good and comfortable within themselves. From dusk til dawn (literally) 😴

Tornado 🌪 has many meltdowns a day as He understandably likes his own space, away from the twins. He does interact and run about with them occasionally but only on his terms. He too likes to climb and move constantly from room to room and scaling the furniture etc but he’s not quite as intense as the twins right now.

For Christmas we are getting some equipment to kit out a sensory gym and Snoezelen/Multi sensory Room with lights chill out area.

Snoezelen or controlled multisensory environment (MSE) is a therapy for people with autism and other developmental disabilities, dementia or brain injury. It consists of placing the person in a soothing and stimulating environment, called the “Snoezelen room”. These rooms are specially designed to deliver stimuli to various senses, using lighting effects, color, sounds, music, scents, etc. The combination of different materials on a wall may be explored using tactile senses, and the floor may be adjusted to stimulate the sense of balance. 

We are hopefully setting this up in our garage eventually. It’s gonna take some doing cause the garage is full to the brim with crap but will be my project for 2020.

We’d love to kit out a proper therapy room to benefit all 5 kids. I’m talking crash mats, soft play, climbing equipment, indoor trampoline, ball pit, balance beams, spinning/rocking toys and climbing walls, lights, mirrors, fibre optics etc. The works! They deserve it!

This room will help improve our stress levels and help the all of the kids development and sensory needs, even the bigger ones. It will help us manage the behaviours and give them somewhere to focus this energy on and let them climb, balance, hang upside down, spin SAFELY to their hearts content!

However this equipment does not come cheap, especially the lights and effects stuff. Although we have some items arriving as gifts for Xmas. To make this a perfect sensory environment it’s going to take time and a lot more dosh! But the end result will be so worth it and really beneficial to our kiddies development and wellbeing 😊.

Ok so this might be a little bit cheeky but if you don’t ask you don’t get, right?!…….

We decided we might try some fundraising for our little monkeys to help make this happen. We are thinking of starting up a Mad Madden’s Crowdfunding campaign after Christmas! I’m not gonna beg constantly but would be enormously grateful if anyone could donate to our fund, even a couple of pounds would be amazing! Every little helps as they say. 😉

Thank you for reading and well done if you got through the whole post lol 🤪 You know I love a good rant!

Till next time

Love L 😘 x

Clap, flap, spin and bounce!

Calm After the Storm

The Meltdown

The sadder side of autism is the frustration and lack of understanding of their own feelings and emotions. Ladies and gentlemen we have the extreme meltdown. Not just a naughty child just having a paddy. I’m talking an uncontrollable meltdown of epic proportions!! 😩

It is a barrage of pent up emotions all fizzed up inside and exploding like fireworks, screaming 10 x as loud but not as pretty.

I watched as the meltdown unfolded….it emerged from the depths of my child almost out of nowhere. All of a sudden BOOM! ✴️ It explodes and Woah Mumma ….this one is a right corker! I am holding back the tears trying to regain some control but I can’t. After an hour of this, with no sign of relenting, I am pushed to the brink of insanity telling myself “It’ll all be good, just give him time to get through it”. However It’s too late for cuddles, distractions, songs, funny anecdotes and silly faces etc. These methods sometimes work to nip It in the bud before it reaches a crescendo. Not this time, it’s too far gone for that. The boy is in full throttle with an huge emotional outburst he and I are not quite sure how to deal with it…..We are at the point of no return and there’s no looking back.😭

The screaming squawking, self harming, head butting, scratching and lashing out is heart wrenching to experience and all I can do is try and keep him safe. Sometimes I get caught in the backlash maybe a slap to the face or a punch but I don’t mind, it’s not intentional or malicious and the priority is his safety and welfare.

The expression on his face is pure sadness, pain and frustration. The emotional turmoil he is in upsets me more than words can explain. I can’t help him, I can’t stop these feelings upsetting him…he is immersed within this unpleasant whirlwind and doesn’t know how to cope 😢. All I can do is just be there beside him, not too close yet not leaving him completely alone … just there. ❤️ We simply have to ride out the storm together and wait for calm or exhaustion (whichever comes first)

The Aftermath

Now a few hours later I watch him sleep. My beautiful boy, so peaceful after the awful happenings of earlier. Luckily he will wake up and not remember a thing about this. He will carry on being his normal happy, cheeky self, so that is some blessing.

I’m shattered and keep getting flashbacks of how distressing this particular episode was for all BUT we survived and came out the other side as we always do. x 💙💪🏻😢😊 #autism #asd #awareness #motherslove #wearestrong #warriors #meltdown #nonverbal #feelings #parenting #blogger #sensoryoverload

Invisible disability

An education in autism.

From looking at my boys you wouldn’t really know there is anything different about them.
My 2 eldest ones have a diagnosis of autism and ADHD. Archie was diagnosed with classic autism age 4 as it was very obvious and Toby diagnosed with Aspergers later at age 6. There is also the distinct possibility that the Tornado (2)🌪could also be on the spectrum somewhere. We’ll cross that bridge as and when we come to it.

The big ones draw attention to themselves daily by their outrageous behaviours and quirkiness. They do everything at 100mph (That is everything except getting dressed for school). The volume is always cranked right up day or night. Their shouting and squawking goes right through you sometimes 🙉. I’ve become accustomed to their strange little ways BUT those passer bys and people looking from the outside in, sometimes look on in disgust and utter disbelief.

We regularly get the disapproving looks, stares, comments and tuts. …….not that’s it’s any of their fecking business! 😬They can see me struggling already but throw daggers at me muttering under their breath about my unruly children. If only they could walk a day in my shoes and see how hard ‘normal’ Life is for us.

Mind you before becoming a Special Needs mum myself, I too, was probably quick to judge… If a kid was playing up in The supermarket for instance, I would assume they were being naughty and vowed my kids would never be like THAT spoiled brat.

Oh how my opinion has changed! Knowing what I do now . When I spot a mum getting flustered as her child is having a massive meltdown, I feel empathy for them and try not to draw any extra attention to her as she’s struggling to cope. If I do happen catch their eye I give a knowing nod and smile. Whether their child is diagnosed with a disability or not, that friendly glance will make the world of difference to them. 😊

The disapproving old biddys and oh so perfect mothers can do one 🖕🏻I’ve been in this game long enough to mostly ignore those kind of people. Arseholes to em!! But obviously I am only human so they may catch me off guard on the odd occasion. 😓

I do explain to people who I think want to listen and be educated on autism/ADHD or sensory overload ……At least I can say that my kids are not just naughty unruly little shits😳. There is a reason for the way they behave most of the time! I only talk to strangers who might try to understand at least. Alas there are some people who will never even try to see how difficult it is. For us to do normal every day activities with special Needs kids takes planning, a calm disposition, patience and a good sense of humour. 😜

Some people think your kids just a good slap and discipline would sort them out…..How very wrong they are! Unfortunately their brains are wired up differently and the way they see the world is from a totally different perspective to you and I or the neurotypical person. Yes they are loud, they have tics, make strange shrill noises, repeat the same things over and over, they’re obsessive and do crazy impulsive things. Not to mention the lack of social skills and taking everything literally.

Obviously they are not all sweet and innocent and quite capable of playing me up but as a SEN parent you have to decipher what is behaviour due to autism ADHD PDA ODD sensory processing disorder to name but a few things it could be OR if they are being naughty in the traditional sense and need punishment. It’s very difficult to see the difference sometimes.

I’d like to say it gets easier as the boys grow up but the challenges that arise are just different especially when u throw in a shit load of testosterone. The dreaded puberty years!! The boys are as big as me in size and more vocal and argumentative nowadays. I find myself wagging my finger, looking up to them when telling them off! Kevin the Teenager has nothing on these boys. I hear myself saying things you’d hear your mother say like ” if you WHAT me one more Time young man you will be in big trouble” …….my God I’m getting old even caught myself saying “back in my day this would have happened …. ” WTF ?! then Made a mental note to never utter those words again 🤣

I won’t lie, sometimes it does get to you, the way other people think and the rude comments they make. I mostly turn the blinkers on and just focus on the kids diffusing any difficult situations we have. Mostly I don’t let it get to me and just have a good rant on Facebook and most importantly I laugh at these off moments cause if I didn’t laugh, I’d cry (all day long)!! 😭seriously though it’s good to make light of bad situations and think oh well tomorrow is another day. Draw a line under it and Move along swiftly!

Phew that was along one and a bit on the serious side but felt it needed to be aired😘😊😜 xxx