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.