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.

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!

Teaching manners and life skills.....

I have to admit, this is a pet peeve of mine. I was brought up with the ethos of 'Manners don't cost you anything' and its an ethos i am drilling into my boys.

Now, I thought with R the hardest part would be to get him to remember to say please and thank you - it hasn't been! He took to those words very very quickly from about 2-3 years old, and I kept getting told I was too strict with him over it and that he was a very polite little boy.

If he's in meltdown or just plain overwhelmed and getting angry and violent, the one thing that will always make you giggle, no matter how hard you try not to, is that all the way through he's constantly saying 'sorry' and 'thank you for this time mummy/daddy'. Its not necessarily what he saying but more when and how he's saying it. Sometimes us giggling over what he's said, whilst trying not to get kicked or hit, can actually break him out of his melt down - this doesn't work when he's overwhelmed and just can't process anything more.

H knows how to say please and thank you, he's only 3 years old - does he use them? Nope! I hate it and we try everything we can to encourage him to actually say the words. H uses it when it suits him and not us - but you know he's 3 and as long as he remembers when he goes to school, I can't really argue with it.

So far, you are probably thinking, 'ok this sounds like any kiddo, whats so different?'

Well in my experience, we have been lucky with R and his manners. Not every complex needs kiddo can talk or even comprehend please and thank you. This is because, as with any of us, their brains are wired ever so slightly differently. So what R can master, others may not and vice versa - for example table manners and social interaction.

H can use a knife safely, eat with a fork (even if he prefers his hands) and many other things R just can't seem to grasp for very long. Don't get me wrong here, R can use a knife safely and a fork but his brain just can't grasp how they work together, therefore making cutting up food and using the knife and fork to scoop foods up extremely difficult for him.

This can result in food times being long, drawn out and plain old painful times within our household. Mainly because we refuse to believe that he will not grasp the concepts at all. We trust that with belief that he can do things, he will. A bit like when our doctors told us to expect R to never read, write, attend mainstream schooling and to never be able to play football (and other fast moving games) - He's actually achieving all of these things because we never said he couldn't do them.

Social interaction, though is a completely different beast, and one we struggle immensely with every single day! From simple things like personal space to more complex things like why we don't show, talk and feel our private areas in public. Stranger danger is a concept he can repeat back to anyone who asks - verbatim - but he has no actual understanding of what this means beyond us teaching him. That is to say R understands whilst we explain what stranger danger is and what the problem is with speaking to others we don't know - once we stop speaking, it no longer registers in his brain as a lesson learnt.

So as with any kiddo this is a constant lesson plan for us to teach R (and H as he grows up). The problem with having complex needs is, you never know what sinks in and takes hold - and what doesn't! So if you ever see a parent, with a child who clearly looks old enough to grasp the lessons said parent is telling them (like road dangers for example), please bear in mind that they may have covered this lesson at least a dozen or more times by the point you see them.

Why not pop over and say you see them struggling, that you understand, that they are doing a good job or even ask if they is anything you can do or get to help them. Its a small kindness but one us parents of complex needs kiddos sometimes need - to know others see our struggles but know we are doing our very best for our kiddos.

Siblings.....

Ah siblings! No matter if you have a child or children older or younger than your special little star (that's what we call R) sibling love and rivalry is always gonna happen.

I know, every parent has to deal and overcome these things but when you knowingly add another child or children into the mix on top of a complex needs kiddo, it weighs heavily on your mind. Now we got very very lucky when we had H with how close and loving R and H actually are. Even when I had to stay in hospital before H was born, then when he was born 9 weeks early followed by R's 4th birthday 2 days later, he only got a call from mummy that day and it still breaks my heart when I think about how he casually and quietly asked when I was coming home.

Now that H is 3 years old and learning about actually talking for himself (R tends to do his talking lol) R is learning that you can love someone yet get annoyed at them. H is standing up for himself so much more when it comes to R, he used to just follow R everywhere and do exactly what R asked him too.

R gets upset when H pushes him out of his personal space telling R 'no'. Yet I don't often get involved in those little arguments because do you know what? Both of them are learning about personal space and what is and isn't socially acceptable.

Does it always go this way? No!

Sometimes I have to wade in and do some mummy shouting and break them apart, even if they aren't actually fighting but playing. Why? Well their playing involves jumping on sofas and generally doing unacceptable things to our furniture and non toys items.

Then there are times like tonight. Me and hubby are going on one of our extremely rare Date Nights out, H has a cold and R keeps trying to 'make him feel better' - smother him in hugs lol - so R came up with a compromise which I was impressed by (it's a concept we have barely introduced) and this is the result:

Parents evening.....

Yup it's that time of the year when parents all over go to see their kiddos teacher to here how well (or not so well depending on ur kiddo). All over social media, parents are raving about how awesome their son or daughter have done at school and how proud of them they are.

I am, unfortunately, one of those mummies who dread each and every meeting at the school. Do they all turn out a bad as I fear?

No, not all the meetings at school turn out as bad as my fears. The issue arises from several areas - an old school R attended, as mentioned in a previous post, and his complex needs. I am forever aware that R has these issues and how they can affect him in his academic career. Every positive comes with a negative and how to offset these problems.

Does this mean we, as parents, are any less proud of our children?

To me, it's a no brainer! I'm as intensely proud of R as I am of H, and I believe as any other parent is of their children. In some ways, I think parents of children who need that extra bit of help, can actually be prouder of their children. No, not in the bragging way of 'my child is better than yours' but in the fact that every single achievement is a massive step forward.

Let me explain what I mean. With R, it's the fact he got through a whole school day on green (our primary school does a traffic light system), or that he wrote one word without the need for dots to trace, or even that the teachers and headmaster (as his old school did) don't grab us after school to talk about how bad his behaviour has gotten that day. It's the fact that we didn't have to resort to shouting and removal of tech time to get him to change from his uniform into play clothes, or that he willingly entered the shower or didn't fight us when we brushed his teeth.

H is different in the fact that he's 1. Younger than R and 2. Neuro-typical. This means we are proud of having an amazing parents evening report, like those parents on social media extol. Saying that, we have the added bit of how H copes with having a big brother like R. H looks up to R in a way that I don't normally see in other siblings - it's like a cross between sibling love and hero worship. That's not to say they don't fight, because goodness me do they ever fight! It's that, as a younger brother to a complex needs kiddo, H has to learn fast what triggers R into meltdown, how to calm R when mummy and daddy won't do for R and also, and in many many ways the most important way -

H has, and is still learning, that everyone is different. That they all see the world in a slightly different way and that, that is ok. This shows the most when H interacts with other children, of all ages. He's empathic and understanding when someone can't talk, he plays with everyone and adapts to how they process the world around them.

So, you see, you will never see me on social media, after a parents evening extolling how proud and wonderful my sons are because everyday they show me those little amazing things and we tell THEM how proud we are of them for that achievement.

Always remember, our children don't need us to tell others how proud we are of them, they need US to tell THEM of that proudness and love in THEM. So go, give them a hug and tell them right now. They will be surprised and weirded out by it but by doing it everyday they will in turn tell YOU how proud of YOU they are.

Learning as we go....

I found this image on Pinterest this evening, I love Pinterest don't you? It led me to a fab LinkedIn page by #Mari Nosal, author on Amazon of the autistic spectrum


Being a parent to any child is a constant learning journey but add into it ANY extra needs - Autism, ADHD, ADD, speech delays you name it - can make this typical journey so much more of a journey. We still have to achieve the same milestones as any other parent yet still navigate the whirlpool of doctors appointments, specialists, not getting answers, people judging and my worse nightmare of all - being told you are a bad parent!

Yup I have been told this, all because I was sick of constantly saying 'Sorry, he's autistic' whenever a meltdown occurred outside of the house, so had at shirt made that said 'I'm not being naughty I have autism but I'm awesome!' It made it so much easier to explain why we needed a booth and not. Normal table and why he was crying over the fact he had lettuce on his plate and therefore couldn't eat anything on that plate.

My message today is that no matter how low you feel, no matter the judging of others or of yourself - as long as your child is happy (however they show this!), as long as they show you that they love you and want you - know that you are. Being the BEST parent you can b, therefore in my book:

YOU ARE AWESOME!

Before and after school...

Those tricky hours when our darling children are at home and not at school.

I am one of those parents, who love their children beyond anything, BUT can not wait for them to go to school! I know, bad isn't it? Let me explain why.........

When R was growing up, I loved the fact I was there to help him, guide him and be there for every first but as he grew older and no longer needed me as much; he needed other kids his age, I knew I needed to let go.

The same is happening for H, although I'm less keen to let go due to the fact he's my last child. As a complex needs child grows, some need more and more help to achieve integration into today's society. Ones like our R need to learn how to pull themselves back to intergrate into society. Schools are just that environment in which to teach and show them these skills - be that main stream or a special school.

I do not use the term special school to be offensive, but to point out the difference between the 2 types of schooling available to complex needs kiddos. When my boys are at preschool and primary school (yes R attends mainstream), I feel a sense of relief. I do feel bad about that fact, but a fact it's all the same.

Relief because for at least 6 hours a day, 5 days a week, I get that break from them as does hubby when he attends work. I know as parents we shouldn't feel like we need that break from our children but complex needs kiddos are full on. Be they like R and very touchy, active and wanting constant attention or be they like the stereotype of withdrawn, shy and avoidant of touch. They all need our full 100% attention to either calm or to be active; add to that younger siblings who are neuro-typical? Well you try to spilt yourself give each child 100% of your attention at the same time - can't do it can you?

Don't worry, neither can I. We try, oh my goodness do we try, and sometimes we can, as a couple, achieve some semblance of this impossible task. We have a day once a month, when pennies allow that is, where we each have a child and for that day it's just me and R or me and H. They decide what we are doing for that day. I love those days.

But on school days? Phew those few little hours they are home - pure hell! Well it was before hbby stepped up and does the morning routine (thanks to my health deteriorating), and after school? Well R get half hour on either his iPad or Xbox game, never both. He loves it because that becomes his time to wind down from school in a way that means H gets some one on one time without having half a mummy or daddy (the other is playing with R).

Then comes the hell of tea time. You wouldn't think this would be an issue, but it is. R won't eat meat, not a bad thing this but then he won't eat vegetarian food either, or jacket potatoes that are soft and fluffy inside as they feel like mash to him (which he hates). So are go to foods for him are any fish product and chips. Now comes the fun bit - H wants to be like his big brother! So he the same food, although he will try our food as well. They both get a ton of vegetables as well mind you, and H loves his fruit!

After tea, meltdowns happen over bedtime. R doesn't want to go to bed, H bounces off his brother despite being knackered which results in both boys crying! Sigh another night happens. What do you do?!

Well for us bedtime routine works wonders. No not a bath, story and bed but yoga, star lights and adele music. Yup you read that right! The boys do warrior 2, tree, chair, downward dog and zen, or to them surfer, tree, ski, dog and owl. They are calm and easily led to bed where they are tucked in with their star cube lights on and adele's album 25 on as background music. Now R sometimes sleeps on his matteress, and sometimes on his floor - we have learnt to just go with the flow.

Always remember that despite how much a complex needs kiddo frustrates us, angers us, makes us laugh, makes us cry and the other thousands of things they do - they are still just,I've us, they just need to use a different path to get to the same destination.

Birthday parties....

Yes the dreaded party season is on us.

To be honest before September 2015 this was never a concern of ours. R never had invites to his friends parties, apart from family friends kids that is. I always thought this was down to him always preferring older or younger children, and as such didn't get invited because he was either too young or too old for such parties.

Turns out he actually didn't have friends, I know it's a horrible thought, kids played with him at school because it was kind of expected of them. It spiralled from there really, parents were teaching their kids, in front of R, that they couldn't play with him because he had brain damage (which he doesn't I must point out!)

Then we had to move to a different county, several hours away. I wasn't looking forward to it but the school sounded promising, hubby attended when he was a boy, and I was hoping beyond hope that moving meant R would finally find real friends. You guessed it, it didn't happen! He was isolated both in and out of school! Parents and kids judged him and me for how he was and even told him I was to blame for his issues.

Now, saying that there were some fab people in that village and their kids loved R, still do. They were there for us as a family when the poophit the fan when the school didn't get the outcome they, or we, wanted from the new Educational Health Care Plan (statement).

Move forward 18 months from first moving into the county and we finally get offered a council house in a new 'village'. I use village loosely because our new place is huge, if it had a small shopping center it would be classed as a town lol. The house is better for us all, the school is AMAZING.

The kids have taken to having R and all his issues, into their fold and now we feel like we have a party every month! Now the downside to this minor miracle - yes there is one! Think sugar, lack of routine and mixing neuro-typical children with our R, and you get a hyped up, bouncing of the walls little boy. Adding to that he isn't aware of what he's doing, a shouting mummy because he's winding everyone around him up and so not listening to a single word I'm saying to him = a massive bedtime meltdown, even whilst he continues with his normal nightly routine.

If it wouldn't have wound him, and me, up further, I would have giggled at the picture he made - sobbing his heart out, screaming at me that I'm a pig and he was gonna hurt me, whilst contorting his long gangly body into yoga poses. Once he was finished with the deep breathing pose, he came over said sorry giving me a huge cuddles and a kiss. I explained to him, now he was calm, why I felt and acted the way I did and said I was sorry too. I love you was shared and finally he went to bed calmer.

This could have been worse than it was to be honest, and it has been violent before we introduced the bedtime yoga. The unfortunate side affect of all of this going on, is little H wants to do the same as his big brother, and hates that he can't behave the same and get these me treatment.

That in itself is another post for another time - how raising a neuro-typical kiddo alongside a complex needs kiddo = a very interesting but frustrating life 😀❤️

Lazy days...

Today was supposed to be house cleaning day but the boys were full of the bounces and couldn't seem to settle. So we all bundled up warm and decided to have fun out in the garden.

We have a trampoline outside as well as a long garden for running around in. I completely recommend getting a trampoline to any and everyone! Even if all you have room for is one of those indoor kiddi bounce things, especially for those of us with special kiddos.

After an hour bouncing around, digging up the wood chips and putting them in black bin bags, then helping daddy dig up and move the paving slabs both boys were calm and happy to sit watching Guardians of the Galaxy with cold hot chocolate - R hates hot drinks but loves hot chocolate hence the cold hot chocolate lol.

Mummy fell asleep as per my own medical issues, so missed all the movie 😲😟 and I LOVE that film. R loves Drax as he feels that Drax is just like him - very literal! Honest watch the film and in the prison break he says metaphors do not go over his head as his reflexes are so fast he would catch them 😀 That there is our R down to a tee.

Now R is upstairs playing in his room and H is sat with daddy playing on his leapfrog Leap Pad. All is quiet and calm - for how long is anyone's guess but we enjoy it whenever it arrives in our house. This allows me time to look at the pet rehoming centres and sigh longingly at them.

Hopefully by the end of the year we can afford a dog, I know they are expensive but oh so loving. The biggest benefit would be to R, as well as H of course. Pets can have a huge huge effect on special kiddos that far out weighs the cost. Pets can teach kids about social skills, love and how to care for something or someone who can't do it without you around.

Hoping tomorrow goes just as well, as they have birthday parties to attend! 😮

Medical professionals....

Right, so doctors - both in hospital and medical centres (GPs) - have been a huge part of our lives since R arrived in 2009. Some have been absolutely fantastic and I have hated to leave them behind when we had to move house; others I have hated how they made us feel like we were making things up and that we didn't know our son!

7 years later and we still encounter this when our usual consultant isn't free to see us or has moved onto hospitals new. For me it's the constant repeating of everything that's on his file - from my pregnancy to each and every fit. His behaviour, his meds and even his poop cycle! 😲

Once you can get past that little hurdle, usually the path smooths out and you finally feel like some forward motion is achieved. Sometimes it's a false feeling, as sometimes even experts in their fields, just don't know what's happening or what will happen. It's all a learning curve for all of us - R, me and his dad, his little brother, his grandparents and even his doctors.

If you are feeling lost or alone - you, my friend, are not alone! All parents feel like this, and sometimes for us who have a child or children with any extra need, it can feel like we ALWAYS feel like this.

Does it get easier?

I'm still waiting to be honest. Life can be difficult with R alone but add that to an active 3 year old, a daddy who works full time and a mummy with her own medical needs = a controlled chaos 99% of the time. The missing 1%?

That's when the kids are asleep! Lol

At the beginning......

I have spent many hours trying to figure out how to start this blog and why I even wanted to start a blog, when it started out as a book! I finally realised that, what we dealt with everyday and how we dealt with these things couldn't really fit into a book yet because how can you write a book about parenting a complex needs kiddo if you haven't finished being a parent to begin with?

Answer: you can't!

So I decided to start from the beginning, not the beginning in as much as when we first noticed anything was different but the beginning from when we first thought we were pregnant. I know, why? Well, its because as a parent to someone with complex needs, you spend a lot (and I mean A LOT) of time blaming yourself and what YOU did or didn't do to cause this to happen to your child or children.

I felt that I was to blame for R's issues because I had used jacuzzis whilst in the first few weeks before I knew I was pregnant, because I had a few drinks during the pregnancy and because he was born early due to MY body failing him.

All sounds ridiculous right? Yup, even writing it, it sounds silly! :-) But there isn't anything right or wrong about what we blame ourselves for as parents or even logical to be honest. It wasn't my fault I didn't know I was pregnant at only 2 weeks gestation, it wasn't my fault I ended up with pre eclampsia at 33 weeks gestation causing me to be induced at 35 weeks. The drinking - well I had 3 glasses of wine over the whole time, so not exactly a large amount and to be honest most of that was before I even knew I was pregnant!

He came out screaming, this tiny and skinny baby. when I first saw him I fell in love with another male, this one just hours old. This one was definitely more lazy than the first man I fell in love with, my husband, because he didn't want to poop and need up to neonatal for 2 weeks before he came home.

He seemed to progress fine if a little slowly, then at 10 months old cam a horror I wish no one ever has to experience EVER!!! My little boy had a fit - I didn't know that at the time as it didn't look how I had been told fit would look like or how I imagined it to be. After a week back in hospital, we were told it had been a Febrile Convulsion - yup sounds weird right?

Well its temperature related seizures or fits. These continued every 3-6 months until he was almost 3 years old. By this time we knew he was behind on speech and noticed other little things different between him and his peers. The consultants then stated he had A-typical Febrile Convulsions - meaning there weren't normal - so they put him on Sodium volporate, an epilepsy drug. For the first time since that first fit my little boy was fit free! As he grew the dose changed to cover break through fits, these due to his height and weight changes.

Now he's 7 years old with no fits, he's still on sodium volporate as his Febrile Convulsions turned into Temperature Related Epilepsy (this due to scars on his white matter, it is not typical for children with febrile convulsions!).

He has finally been diagnosed with several issues which cause him and us to struggle each and every day, which this blog is based on, but he is still a happy, full of beans, loving little boy. All he wants is to have fun, laugh and hug. His diagnoses are: ASD (Autistic Spectrum Disorder), SPD (Sensory Processing Disorder), SCD (Social Communication Disorder), partial 3rd nerve palsy, no 3D vision,  Epilepsy, and  Chromosome 14q deletion (although we are all unsure how this will affect R in the future).