Sensory overload.....

Also known as meltdowns, sensory overloads are never pretty and never logical to us parents. Anything can set them off from clothing to someone talking a bit too loud. Sounds unreal and unattainable right? It did to us before R had his first meltdown.

To be honest I truly thought it was just your stereotypical toddler tantrum over having to wear clothes (H does this even now at 3) but after talking to various doctors, spanning at least 3 counties, and to friends who have kiddos like R; it became clear that these were not your normal tantrums.

Now most parents, if your lucky, experience tantrums throughout their child's life (no matter the age) they just know how to actually get the best results the older they get. These tantrums, from experiencing H, normally involve the odd toy thrown across the room or even sitting on the ground screaming blue murder because he was told no. Some kiddos even kick and hit in public arenas when presented with the term NO.

Sensory overload or meltdown is so similar yet also extremely different. The triggers aren't always the same as a tantrum, although R has felt being told no to be too much on top of everything else. For us, a meltdown in R is a full body experience - crying, rocking, spinning, jumping, screaming, kicking, hitting and on occasion biting. During these meltdowns, we have found the best thing to do is stay CALM and turn sounds down (or off) and stay back. Getting angry with him just makes it all worse, so I am sometimes found walking away from him - is this right? Not always but I always make sure he is safe, that his dad is with him (he's the calmest one of us) and I know that I'm angry at the fact I'm helpless to help him, he doesn't need that feeling from me.

Imagine your 7 year old is as tall as a 12 year old, as flexible as a rubber band and has the strength of an 18 year old. They have complex needs, of which sensory processing disorder is one - the trigger this time is that the sun is too high in the sky and his brother is in his space. What do you do?

Well we close the curtain so he can't see the sun and explain his little brother is on the other side of the room. Works right? NOPE he goes into full on meltdown mode, so you remove little brother so he's safe, sit down so you are supported by a wall or sofa, grab the child and plonk them on your lap. Now the hard bit here is keeping him there - you try holding his arms across his body, you even try lying down with you legs over his legs to stop the kicking but he uses his head and it's like riding a rodeo bronco (or at least what you assume it's like).

Fast forward an hour and the meltdown is still going on, you have tried everything the parenting course suggested, you have implemented Pinterest ideas and even resorted to removing privileges. What's left to do?

In our experience, nothing! Each persons meltdown is different and individual to them, so bear in mind so tactics help some where it's doesn't for others. R is one of those kiddos where the triggers are NEVER the same thing, so an avoidance plan can not be used. We have a thinking chair - yup it's as hippy as its sounds lol but it's works for us.

The thinking chair used to be called the naughty chair until Blues Clues found its way into our house. We have a sand timer which had sections for 3 minutes, 5 minutes and 7 minutes which we pint to the colour sand that indicates how long both R and H have sat on the chair to THINK about what has just happened. For H it's to think about his behaviour and how its wasn't the best choice to make. For R it's a place to think about how he feels, what made him feel that way and how his behaviour due to this wasn't the best choice.

Do we expect too much from our sons? Maybe we do in some ways but as I have found out over the years - shouting and yelling achieves not a lot. We let the meltdowns R experience run their course, even in public (although we do move it to the car) and then once he has calmed, we ask him to sit on the thinking chair to think about what has happened and how it affects him and everyone around him.

It sounds so very easy doesn't it? It's not, nor has it ever been. Every strategy we have found, tired and failed at, we did with no support for. Professionals or education.

So today's post, is about understanding that what can seem to be a tantrum may actually be a meltdown or sensory overload; the reverse is true as well. Many times R has tried to make out a basic tantrum is a sensory meltdown (he's a smart cookie)

Other agencies....

These are called 'outside agencies' by professionals and by us parents - nightmare!

Sometimes they are so so welcome, even sort out by us parents. Then there are the times when, due to all the horror stories, we never ever want their attention turned our way but it's taken out of our hands.

Those times are the ones I really - I mean REALLY - hate the people who think they can put their opinions above that of the family (yes, this has happened only once to us). For those times when they are welcomed with either wide open or slightly ajar arms, they can make or break your day.

For example: here we have Parent Support Advisors and we have dealt with 2 different ones due to locations. Both women have made a huge difference to us as a family; our current one keeps us on our toes (in a good way 😀) and is always willing to try alternative routes to get us and R the help, support and understanding we need - desperately!

Then you have Occupational Therapists or OT, these men and women when dealing with a family like ours, are true saints! I say this because ours is a community OT so deals with all of us. She listens to R (who does not stop talking) whilst treating me; and I don't stop talking to her. Mainly because loosing independence is hell socially lol.

Another agency we haven't met outside of a hospital and wish there were more working alongside other agencies, are the play therapists - play as in toys! Most people I know do not understand why I wax lyrical about these people but it's because life can be overwhelming for anyone, but especially for someone like R. These people can pop up just when you think 'I'm gonna loose it any second now!' They never take themselves or the kiddos behaviour that they deal with seriously.

I remember the first time we ever met one of these saints. It was before we had H and R was in to have his tied down testicle operation site checked. In a new hospital, new clinic and FULL of noisy kids and shouting parents, not a good environment for R not to blow his sensory gasket. I think he could pick up on how tense we were about how he would handle this all, which wasn't well at all!

As he started to blow and throw toys around and generally scream, cry and sensitive to touch - in walked this clown. Yes a CLOWN - curly red hair, red nose, even a water squirting flower! He walked up to R and crouched to his level - que deep intake of breath as visions of R hitting this bloke in the manly bits - turned to him and said, 'Well now I'm Dr Hoothill, and that's my patient you are throwing around. May I do my checks now?'

Now I bet you are there thinking 'this is where the poor man gets decked out', nope that didn't happen. R just stopped everything - I mean EVERYTHING - and turned to him to hand him this truck with his questioning look then signed yes. R avidly watched as this guy held a stethoscope to various points on the truck, gasping every so often and talking to the truck like he would a child. Dr Hoothill (still makes me giggle now), then handed the truck back and said 'Thank you, he's all better now. What's your name?' Now R only had a handful of words at this point and used them right here shocking us both, 'Roman Rees Carey, pretty flower'.

The guy then lent forward for R to sniff his flower and pressed the button to action the water. I truly thought R would scream blue murder, he just giggled and pushed the button again put in the mans face - most adults here would be horrified they got wet, not this man - nope he belly laughter then fell on his butt making R giggle more. Saying good bye he walked to us and said, 'What a fabulously happy little boy you have, well done'

I will admit right here, I cried! This just shows you what a MASSIVE difference an understanding and accepting adult can make to the PARENTS, let alone the child or children. This man, who didn't know us or R or even why we were there, accepted that R was struggling with the environment. Instead of insisting R be moved to another area, he just made the environment more friendly to R's mind. Then just topped it by accepting that we were struggling alongside R but we're doing the best we could.

Always this moment sticks in my mind when a new outside agency is introduced, because you will never know when the one person will make such a difference.

Routine or not to routine?

That big question every parent dreads - do you put a strict routine in place or not? And if you do what age and how strict?

We, personally, started very early with a basic loose routine from day one - things like bedtimes, meal times and sleeping in their own rooms. Not all parents like this style but I'm a firm believer in everyone follows their own road and try to never judge another parent for their style - I expect the same back.

As the boys have grown we have implemented more routines like tidying up after themselves and eating at the table (whenever possible that is - everyone loves carpet picnics lol). The only problem we have encountered with routines is R. Yup, I put him as a problem here, that's because R thrives on routine and an extremely strict one at that; mess with that and holy moly meltdown it gets bad!

As a parent, a routine as strict as R needs was never on the cards, and now, for me personally, a near impossibility. We try, for him, to keep up with it but have started to loosen it off for him. Ok that sounds so easy right there - it's not!

Firstly, we have to explain every single detail of the whys, the what's and the how's to each reasoning. Secondly, we have to do it s....l.....o......w.......l......y - so slow it sometimes feels like nothing is changing. Then comes the day, finally after copious amounts of tears (them just from me!) and meltdowns, he just accepts bedtime yoga (or anything else for that matter) can't always be done downstairs in the living room, even done at all some nights.

It's painfully slow to adjust routines once they are in place, especially when those routines are bad habits - eating out most nights or eating on your lap more than the table. So the question still stands - Do you put a routine in place or not?

That question is only for you, as a parent or carer, can answer and sometimes it's trial by fire with them until you and your complex needs kiddo find that balance. Personally, in this household, we will keep persevering with routines, even if they need adapting often.

Labels?!

Lets think about labels right now - ASD, SPD, ADHD, ADD, ODD, CFS, ME, Autism, Aspergers, Fibromyalgia, PTSD and so many others for all ages, male and female, all races.

Looks complex and baffling right? It was to us when doctors started throwing different things at us and family/friends kept asking us why we were trying to get R labelled. So many bad connotations to being 'labelled'!

I sat there thinking I was a bad parent for pushing the doctors into giving us answers, to getting R the help he so needed in school and at home - complex needs is blooming expensive you know! As time has gone by and more labels were added to R and to me as well (yes I have extra medical needs as well), the more I understood that for schools this meant there was more money pots they could access to allow for one to one teachers, fidgets etc and for doctors to understand what had been tried before or what tests had already been done.

Although to us, these 'labels' were actual diagnoses for R, and meant there was a better chance of getting the help WE needed at home. To have access to grants and funds, which we needed to apply for, to although us to buy R weighted blankets, sensory products, even a trampoline! So far he's got an iPad, which we bought second hand after trading in games and DVDs to raise the money.

Everything else - it's on a wish list or my to make list. Never to be bought or made as finances will never allow, those grants and funds we thought would open to us for application? Nope, not disabled enough!

Honest that's the real actual reason we were given, by letter - not disabled enough and is mainly behavioural therefore does not require our assistance! What more could a child or family need to put forward to be classed as 'disabled enough'?

As I have pointed out in a previous post R has ASD (autism spectrum disorder), SPD (sensory processing disorder), partial 3rd nerve palsy, no 3D vision, epilepsy, SCD (social communication disorder) and a chromosomal deletion - add to that my own Fibromyalgia, ME (CFS or chronic fatigue syndrome) and depression, and still we are classed as not disabled enough.

To me this terminology of labelling someone to help them access support has pros and ere are days when I just write it down and think 'Why?' We haven't received any help that has been about helping us as a family.

Then there are days, especially those when we meet with R's school, that I sit there and think, 'Finally someone understands what we have to go through and they actually want to help!'

So for those who think us parents are ALL about 'labelling' our kiddos - remember we don't choose for our kiddos to have these issues, for us as a family to struggle everyday or visit the hospital every months (for some every week).

For those of you who are struggling with everything, remember this - YOU are doing everything possible for that/those children, keep up the good work mummies and daddies!

With Empathy and Understanding comes Acceptance!

Guilt.....

Firstly, I have spent days thinking about which topic was best for this post (there are a lot!). Then after reading another bloggers post about a mothers guilt over premature birth, the topic of guilt was the best thing to post for you all. (www.anordinarymummy.wordpress.com)

Every parent feels guilt, it's essentially what being a parent is about. It's gritty, it's hard work and it clings to everything (a bit like baby poop!). I, myself, hold guilt to this day over how both my pregnancies and subsequent premature births went. Could I have changed things? Done something or not done something? Why did I have to get pre eclampsia or fatty liver of pregnancy? Why did I feel relief to leave my baby at hospital? Does that make me a bad mummy?

The answers - no! It's been a long fight to believe that answer and sometimes I still believe it was my fault.

The same feelings of guilt plague those of us with complex needs kiddos, even if they were born at the stereotypical times and ways. We sit here thinking 'Was it something I did during pregnancy?'. It's a guilt that hovers in the background until our kiddos struggle with something that, someone else's neuro-typical kiddo can grasp easily. It's deep and dark and we hide it behind our faith in medical professionals, behind the fight with schools and the cost of equipment.

Our ability to stand up for our kiddos against everyone who doesn't see them as they are, stems from this guilt we carry I believe. Not just us mummies but daddies too.

Daddies, sometimes the unsung heroes in my mind, carry just as much guilt (if not more) as us mummies. That isn't to say us mums have it easier or that our guilt isn't as real or heavy as the dads; it's saying that for dads, they enact their guilt in different ways and, yes, sometimes it can be worse than what we mums deal with.

Don't forget, 99% of the dads work full time, come home to take on the roll of daddy, help with bed time (well hubby does bedtime here) and, like with us, does the housework too before taking time for themselves. Not all dads do this and some even do more, but the fact is their guilt will mainly stem from not being around as much, not helping more during pregnancy, not getting that ice cream you were craving at 2am during week 13 of pregnancy. Does that then make it their fault our kiddos have the issues they do?

NO it doesn't! It makes them as human and as faultless as us! Our joint guilty feelings are the reason why we fight so hard, through so much for our kiddos; no matter what the hurdles!

Now, remember, I am only writing from the only point of views I have - mine and hubby's! I know that out there in the world, there are parents who are to blame for their kiddos problems(whatever they are) and that some don't even care about their kiddos. Yet I choose to believe that if you are reading my blog (even if some of my posts aren't all that awesome at times); that you are following the same sort of path as I am and as such, you aren't one of the parents who doesn't care.

Now, do I still blame myself for all the things R has to overcome? Even though, compared to H (who was 9 weeks early), he wasn't really all that early at 35 weeks gestation?

Yes I do still blame myself. He was my first pregnancy and I thought all those programmes I had watched from 16 years old, prepared me for everything; that I was super mum! Erm, sorry but I wasn't! I ignored pain signals when I should have listened and my birth plan - well was plain stupid when I look back; didn't want epidural because of the size of the needle, needless to say I had the epidural.

Some of my guilt has subsided over time, as we travel this journey together. Especially this week (half term), when R self regualted his sensory needs and after I read an article about autism. I do not know how valid the article was but it definitely helped me let go of some of my guilt. It was about a study being done that showed autism starts in the womb as the brain develops. It stated something along the lines of, even if no problems arose during pregnancy, this development of the brain can occur.

So, for those of us with autistic kiddos - there was nothing we could have done to stop what happened. With that I am going to leave you with my hubby's view of SEN or complex needs -

"There are no complex needs, just adults who think kids who just see the world differently, have extra needs than is seen to be normal. Those who have been told they have complex needs, whatever they may be, are just the next evolution of humankind. We are trying to stop that evolution by trying to make them fit into our mould. Let them show the world how amazing they are and the world we live in."

Its not all Doom and Gloom......

Its not all doom and gloom when you have a complex needs kiddo.

Today was sponsored by Mexican food and bowling! A family day out to ease tensions and cabin fever was just what we all needed - was there shouting? Yup definitely. Was there kids fighting? Oh heck was there.

Saying all of that though isn't the whole truth, there was a lot of laughter and high fives. For H this was his first foray into bowling and he loved it! He even had a happy dance when his ball hit a pin :-)
For R this was only the third time he's been bowling, and for someone who hates loud noises and vast crowds; he did fantastically! He even won the little tinker!

Doing something like this as a family is an ideal time to realise the good bits and the bits where you have all grown. For us it was the fact R was able to take turns, congratulate each of us on our scores and even admit (without a meltdown or tears) that he needed the barriers and slope thing to help him.

For us, as parents, it was sitting back and letting the boys do stuff for themselves. Things like R not needing us to hold the ball, shift the slope or take him to the toilet. Things like H telling us he needed the loo without wetting himself in the process. For them both to willingly try a new place and foods to eat, and behave whilst doing it all!

Was today hard? Or even easy? No way! it took planning and bribery to even leave the house! Was it worth it? Even with all the stress around crowds and H running off onto the lane? Oh hell yes it was!

Its not often we, or those who have complex needs kiddos, can get out to places like bowling, the cinema or a restaurant; when we do, we take full advantage of it and enjoy every little high and disregard the lows of that day. What there were lows? I can hear people ask!

Yes, every day has lows; some days more than others, but where there are lows there are highs. Todays were that H had his naughty pants on and felt the need to test every single boundary known to children! For once R felt the need to behave as expected when in public, remembering manners and doing as we asked when we asked it.

So, todays little tidbit - Always remember the high points to each day, no matter how small they are; and tell the world about them because who else will?

Half term ......

Yay! The first half term of 2016 has arrived and, you guessed it, it's started exactly the way it always does - fighting, screaming and the thinking chair being used! This happens every time there is a change in daily routine, and half terms are the very very worst for us, no matter how many days or weeks we prepare R for this week off.

The joys of having children - any children - is that during school holidays you get to have loads of fun together doing things you used to do every day before they turned 4 or 5 (depending on birthdays). I looked forward to making salt dough ornaments, painting pictures and generally craft type stuff when R was born.

He just wasn't interested. Sigh, so out came the football - that he loved! Still nothing but, what I thought were just tantrums (turns out to be meltdowns) because he wasn't going to school every day. Now came the fun bit - holiday club - 7.30am to 5.30pm every day and also before and after school was available if we so wanted. Upside was R got his routine even in school holidays and I got mummy and R time.

Downside - cost! It's blooming expensive having kids, especially when you pay for childcare!

In Norfolk, we don't have access to these type of things (we used to live on a military base), so dealing with school holiday fall out is hell - just like it is for the school the first 2 weeks back AFTER  school holidays. Yup, that's how long it takes for R to adapt to new routines.

I am often heard saying to anyone who asks 'I wish they didn't have school holidays.' Or even 'I will be the first one back saying he's all yours!' This isn't me saying I don't want my son around but me saying that the fall out of the short holidays (like 1 week half terms) are more hard work for all involved, including R and H, than they are worth.

R has enough problems with learning without the added routine changes every half term and end of school year. No amount of warning, teaching or cajoling him into being cooperative, help us as a family.

We are lucky now that his current school are behind us 100% and even try things we do at home, at school. Not everyone is this lucky, and I want those parents, families and special stars (no matter what age!) that you are not alone! We have been in the same situations or at least some similar ones, my advice to anyone parenting a complex needs kiddo is plan plan plan and then follow the kiddos.

Plans can be remade, time with a happy playful kiddo can not be replaced. Does this mean we give in to R and his complex needs?

Sometimes yes we do! Just like all of us - he needs to be and us to be flexible. So chin up parents, day one is finished, therefore making school routine one day closer!