Set backs

Every so often you get lulled into a false sense of normality. This results in a slow relaxation of routines, discipline and of the 'meerkat' affect.

Just to clarify here: the 'meerkat' affect is what I personally call the constant looking, chasing and general paranoia us parents can have when in public or crowded areas.

When this becomes reduced, be warned - the set backs happen!!!!

It can come in any form, R tends to have more meltdowns or act out at school. Other children may use baby words or even retreat into themselves.

We all suffer with them as routine is re-established and 'normality' is resumed, just until the relaxation happens.

I have found that this viscous cycle is never ending. For some, constant vigilance of routines helps to break it. For others, the 'meerkat' is sufficient to keep out of the cycle.

For us here? Well nothing really breaks it. This isn't helped by the fact 3 of us have ASD traits and excell at routines whilst my fibromyalgia and chronic fatigue syndrome don't follow any routine.

My advice - take each day, each hour as it comes. Have fun where fun presents itself.

Change.....

As I have posted before, routine can be a must for a complex need kiddo. As R gets older the more difficult this becomes because he can see his friends are doing things he isn't. Things like riding a bike without stabilisers, playing outside the house (not including the garden), even things like sleep overs and last minute trips out.

It breaks my heart every time he asks me if he can go ride his bike and I have to watch him struggle to stay on it, even with the stabilisers on. To see his tears when he can't seem to achieve, what to him seems like 'normal kids do' (his words!)

I tell him every day that tomorrow is a new day and that I'm proud of anything and everything he does each and every day. He doesn't look convinced though lol.

His biggest break throughs have only recently happened, and one of which his little brother H loves recieving. Let's remember that this is a 7 year old boy who has autism amongst other things, who has at least one meltdown a day and can't adapt to any tiny change. We recently found out that a gluten free diet can be of benefit (I mentioned it in a previous post) and finally bit the bullet and me and R became gluten free.

Cue major meltdown as he cant have a pretzel dog, bread, fish fingers, pizza to name a few! SURPRISE, no meltdown has occurred over food in the last 3 weeks! 😮
I know right?! Since then he's seemed calmer, more centered and more focused. He's more understanding when H has a potty training accidental 2am and is crying because H believes he's failed. He came through and, despite us expecting a whining R over being woken, we got a calm R who walked up to H, gave him a huge hug and a kiss stating, 'It's ok, you are being such a big boy H. I'm proud of you!' Then went back to bed.

This people NEVER happens! We have only had minor meltdowns over onion rings (he hadn't realised they were gluten) and over not going to the swimming pool. So overall, I think we have maybe had 2-3 meltdowns over the last 3 weeks! After he's been on gluten free for over 2 months, we will try a casein free diet as well, as the article I read stated combining the two diets can be more beneficial in autistic kiddos.

I can only hope this change stays and that R reverts back to a meltdown a day again. If anyone wants any tips or advice on how we managed to convince R to even try gluten free foods, I am always a comment a way.

*PLEASE NOTE I AM NOT A MEDICAL PROFESSIONAL OR A NUTRITIONAL SPECIALIST. I DID MY OWN RESEARCH AND IN NO WAY ADVISE CONTRAVENING ANY MEDICAL ADVICE PREVIOUSLY GIVEN. IF IN DOUBT CHECK WITH YOUR DOCTOR*

After school and weekends.....

Those awkward hours when you love having your kiddos around but don't really know what to do with them, especially if arts and crafts isn't really your (or your kiddos) thing!

We still have these times when we know that they need to be doing something but either the weather isn't great or there just isn't time for outdoor fun - tv and Xbox time help in these moments (no judgement please!)

Now a days I sometimes feel R has more of a social life than I do, to be honest that's not hard considering my own health lol! Every 2 weeks R has adaptive ski lessons for an hour, he's about to be registered with the Norfolk branch of the U.K. Special Olympics so that he can compete next year! It's been his choice from day 1!

To top that off he stays after school every Thursday for football club, which he loves and yes he gets one to one most of the time during these clubs. It's a fantastic yet scary feeling when your complex needs kiddo can attend something like after school clubs WITHOUT you being there 'just in case'.

It gets worse, but better, with the launch of the Children's University in the UK, R is more keen to do
things like swimming, library runs and woodland walks! All because he earns stamps which go towards awards. If you are in the UK check out The children's university website for loads more info!

For H there isn't a lot out there for his age but he loves the library and walks. He keenly watches R at skiing and wants to learn too when he's 5 and can get lessons. He's like a sponge and we are hoping that by watching what R is able to do, and us encouraging both of them, that H will want to try new things like R has had to learn to do recently.

Most schools will have access to what's available to your area for after school clubs and weekend sessions, if you want to access something different or new for your kiddos. We have learnt very very recently, that each day should be an oppourtunity for learning - be that expanding what you already know or for something new and exciting.

So our new motto (at least until we learn something new!) is: LEARN SOMETHING DIFFERENT EACH DAY!

Technology?

I know this post may, for some, be controversial but it's a common issue with all kiddos wanting it and parents trying to decide if it's the right thing to do.

Me and hubby were both brought up in the era when having a home computer was a luxury and a mobile phone only happened when you turned 16. Now a days, smart phones are everywhere and every home seems to have a computer of some description. In our home we have a computer (it's rarely used lol) and we each (adult) have a mobile phone, we have games console and a smart tv; we are lucky to have these I know.

The question is, do our kiddos have tech? And is it any good for them?

Yes, ours do. Not phones but R does have an iPad mini and can use the Xbox. This isn't to say he has free reign of those items - he's restricted to half an hour use a day (an hour if he gets gold at school). I do know of some parents who believe tech is not good for kiddos, and I do agree in as far as the time spent on these things.

Tech has helped R learn to read, write and improve his hand eye coordination, allowing him to improve in school and to do things like football. Now he doesn't have access to the web or App Store and his password for in-app purchases is only known by me and hubby (it's long and hidden from him). His app on there are only suitable for his age and ability.

What a bout H? Well he's just as smart as his brother when it comes to tech, he knows how to work a iPad and a smart phone quite easily now and even copies R. I'm not saying this is a good thing, mind you, I sometimes feel like he's growing up too fast but he's learning to write using the same apps as R did and his understanding of the world is much better. Again he's restricted to a maximum of half an hour on ANY tech.

I've mentioned mainly iPads and computers and mobile phones so far, what about tv? Surely that's a tech too right? I suppose it should be classed as a tech, especially considering ours is one of those smart ones that you can add apps too. Generally, I personally, don't consider to as a tech. Yes too much can be bad for kiddos but I believe in Disney Jr as great distraction when housework calls.

So in our own way, we restrict the impact tech has on R and H, but tech is here to stay and is getting more invasive in people's lives, so allowing them some access to it will, I believe, give them help later on in life!

Mummy's, daddy's and siblings...

So far I've talked about how most of this affects the person with complex needs, or how they behave and cope with daily life; now in this post I'm going to cover something that most people forget about - the mothers, fathers and siblings of these people.

First off, and I know I can only speak of my family and others I have talked to personally, we all love that person or people who have complex needs. Without those needs, that person would not be who they are. Secondly, the following feelings, reactions and thoughts, are as varied and personal as the people involved - in other words not every parent or sibling feels this way towards complex needs kiddos.

Caring and loving a complex needs kiddo is a full time, 24/7, full on job! Most of us don't get a break or any help and it's draining - physically, emotionally and mentally. Every day, he'll sometimes every minute, can be a fight, a melt down, a step backwards; yet we wouldn't change it for anything (most of the time!)

Remember, for anyone who looks after a complex needs kiddo who has no control over emotions, their body, over their reactions to stimuli, our own needs and wants kind of get put aside so that our kiddo can get the calm, stable and loving environment they so desperately need. Who else is going to provide that, but us?

Does this mean we break? Does this mean we get ill so much? Yes yes yes! It's not that we don't look after ourselves, per se, but it's more that we just don't have the time to make sure our clothes are on right or that our house is cleaned all the time. We don't have the luxury of crying and throwing our own version of a tantrum over how unfair it all is.

For 7 years, me and hubby have fought every battle, taken every tiny step forward and fallen every step backwards with R. Our health isn't high on the priority list until we physically can't move - for example I have Fibromyalgia, ME (CFS) and depression, hubby has IBS and joint problems. These are not because of R, they are the products of shouldering the stresses and strains of learning how to help him continually move forward with his education, his milestones and his life.

How does this impact family life? In a huge huge way. Each day we both have to take deep breaths, telling ourselves that today is a new day. This is also what we tell both R and H, every day is new and the problems of yesterday don't impact what today can be. As adults, this is an extremely difficult thing to do, I can not truly explains the amount of nights we have spent in tears and heartache. When we don't know if we are making the right decision, or if we did the right thing letting R eat item 1 instead of pushing him to eat item 2.

What about siblings? What impact does it all have one them? Honestly, I don't know - H hasn't known any different, what with being the baby of the family. He's a happy, smiley active little boy who looks at his big brother with hero worship in his eyes. Everything R eats or does, garunteed H will copy him - it can prove for some very interesting and stress filled moments I can tell you!

Having said all of that though, I am left wondering, is there some deep strain on H? Has he been forced to become more grown up because of it all? I seriously hope not, but we may never know until he's older (if at all). For now though, H loves and idolises his big brother and I will not stand in the way of that, or let anyone else do that either (mama bear will come out!)

For now, me and hubby will continue to fight, struggle yet love R and H no matter what may come our way. Is that more nights of crying tears of defeat? Is that continuing to hit brick walls with doctors? I don't know but you can bet everything you have, I will fight with everything in me and within my grasp for those two boys! I will never give up on R achieving his dreams - Oylimpic Ski Jumper, ambulance driving nurse doctor - and I will never give up on trying to give R and H as much of a typical childhood as is in our power!

Diets......

The word every adult hates - diets!

In this post I want to talk about food diets AND a sensory diet. Yes these are two very different things, it threw me for a loop when I first heard the term sensory diet. I sat there, that first time, and thought 'how the heck does that work? How can the senses be on a diet?' I was completely baffled and every Pinterest find and website check, carried on confusing me.

It was only when another blogger posted about there being another sense, one that was about our internal sense (yup it's a long complex word I can neither pronounce or write lol), that it clicked - a sensory diet is about you getting sensory input, just like when we put healthy food in our mouths to nourish our bodies.

Makes sense right? Well maybe only to us that have sensory issues big enough to realise this. Not everyone who has a sensory issue needs such drastic action as a diet, R doesn't need a full sensory diet or he becomes what I have termed as terror tot! Saying that though, R does need rebound actions and swinging/spinning (vestibular) these along with a strict ski lesson routine, he's calmer than ever.

He does still have his days, especially after school, where nothing is gonna stop a meltdown from happening. This is where his food diet comes into play.

Now up until he turned 6 years old R would eat anything and everything you put in front of him, in his reach or he could figure out how to reach. Since that little switch on his 6th birthday went on, R will now only eat fish, chips, fast food burgers and pizza - not including his vegetables and some berries which he loves.

Not a varied diet right? I had always believed that getting my kiddos to eat whatever I made was gonna be easy and it was - until now! So as me and hubby need to loose weight and the usual diet plans aren't working for me (thank you medication) I have gone gluten free, aspartame free and as preservative free as possible. Can you guess what I have managed to do?

Yup, R now is on the same diet as me - although more calorific due to his bmi being so low. It's a struggle, I won't sugar coat this! It's not just changing the food, it's the mind set as well. This last bit being easier for kiddos as they don't have the years of being set in their ways, as my grandad would say.

So to overcome reluctance we have included them in the shopping for gluten free foods - both naturally occurring and in the free from aisle. This makes life a little easier, as it allows them to make the right decisions over what they want to eat, as well as educating them that you don't always know what's in your food.

Sensory diet wise, well this is still a huge struggle for us. We have a trampoline outside that R will spend hours and hours on with his footballs - yes we know, footballs and bouncing kiddo not a good combo but you deal with the ensuing meltdown with violence added in!

We now have a swing set to add into the mix outside, thanks to grandparents birthday present. The issue we have found is that R likes swings but doesn't stay in them long at all - this is where money becomes an issue. He ideally needs one of those cloth swings which go in circles as well as backwards and forwards - these my friend are not cheap, just like weighted blankets (that's for a different post!).

Well now you know roughly what any diet will do for a kiddo like R. It's a daily struggle even when you love them beyond anything. Xx

Schools.....

A minefield right here!

Finding a good school for any child is a hard thing to do but when you add in Special Educational Needs (SEN), more mines appear. Remember the game that Windows computers used to come with - the one where you had to guess where the mines are by the numbers appearing on the squares? Well if you do, then imagine trying that game WITHOUT the numbers to clue you into the mines locations.

R is now in year 2 and has been in 3 schools - yup 3! The first one was brilliant for him but we had to move due to hubby's work, I will admit I did cry having to leave his teacher and doctor behind! His current school is even better - we got lucky with how amazing the teachers and students, even the parents, have been with us all.

Ok so you may have noticed I missed out school number 2 - there is a reason for that, it is still a very anger and pain inducing time in our family's lives that I'm prepping myself to tell you the reality of being in the wrong school. Let me start by describing R BEFORE we had to move - he was always laughing, meltdowns were only when out shopping or in large crowded areas, he loved puzzles and could complete 1500 pieces in half hour without help, he was keen to learn and loved playing.

Fast forward to the middle of reception year and our move to Norfolk. We couldn't see the school before we applied for a place and it looked great website, R seemed to settle in well and we had no adjustment meltdowns as we expected - this should have been our first warning!

Over the following 18 months R became physically and verbally violent, to everyone apart from H. It wasn't helped when he could no longer go out in the garden or into the village without an adult, for fear it would bring the social workers calling. It was a time of screaming, yelling and crying - that just from me! The school blamed everything on us, his family, refusing to admit that they had a hand in this behavioural change. R refused to do puzzles above 8/10 pieces and took hours to do them, when we went to parents evening I could finally see why he was acting out so much!

They had his table facing a radiator, sided by 2 filing cabinets and his back to the class! Who wouldn't act out with this as their daily view?! Luckily we were offered social housing 15 miles away, we loved the house and the school were keen for us to look around. We explained what had been happening with R and how he was in school, they took it with calm explanations that he would be included at all times and never segregated!

Now half way through year 2 R is writing, reading, has friends who come to call for him, even invites to parties. He's slowly becoming that happy, care free super kid he was before. That's not al, this school actually cares about what's going on at home and how they can help him by helping us. As a family, we feel included and respected, as part of the actual community.

So yes I am of the mind that, as a parent, visiting each and every school in your area and telling them the whole truth of what it's like for your kiddo is ESSENTIAL before applying for school places. This stands for high school or secondary school (depending on where you are), R is continually assessed by the school and so far will be attending a SEN High school instead of main stream BUT this may change. As it could for ANY kiddo.