Hi folks!

How are you doing? …All well I hope!

So, our page has been a little bit quiet lately. With Christmas, New Year, School holidays etc… but we are back in business now… (almost! – just need a new phone to get set up again, then we will be all sorted!)

Think my last blog was just after Christmas… I talked about how Cammy struggled quite a bit with the busy, and noisy, household on Christmas Day.

New Year was pretty quiet for us this year though. Only the eldest 3 kids get to stay up for the bells, and Granny came to stay again to bring in the new Year with us, and to join us for steak pie dinner on New Year’s Day… (A very Scottish tradition!).

Apart from all of that though, the school holidays were quite uneventful for us to be honest… (apart from the kids playing with their new toys, and taking our dogs out on walks… not much has happened really!).

I have spoke about Cammy having toothache on the page recently, and boy has it been bothering him lately!!!

I actually feel like a terrible parent right now… too scared to take him to a ‘regular’ dentist, as he will not let them anywhere near his teeth!!!! (and having to wait over Xmas etc… to finally have his assessment appointment, due tomorrow, with the specialist dentist).

If he has been visibly in lots of pain, I have obviously been giving him ‘Calpol’ to help him get through it, but once again… you just feel so helpless!!! (and he can’t tell us how bad it actually is!).

… Fingers crossed for tomorrow though! (Maybe they can advise us on something, until the dental work is carried out!)… really not looking forward to a possible meltdown scenario though… wish us luck!!!

Cammy has also had a bit of a time of it lately with his sensory issues. Mainly clothing… and socks and shoes!!!

(The holidays have mostly consisted of a naked child bouncing on our bed… probably seen by every single person passing by our house!!!!!) … usually followed by me doing a quick grab, nappy put back on, then uv swimsuit onesie adorned. This is literally the only item of clothing I can get him to keep on at home… but Houdini, (aka Cammy the sneak), has now also found a new way of getting into his nappy through the suit!!! … so, still lots of accidents happening. We will get there though!

Socks and shoes aswell… Oh man!!!

This has been an endless battle at home, (only when we have to go out somewhere), and for school aswell… Cammy has been point blank refusing to wear them!!!!

Once he is in the car or at school, it’s not really an issue, but when you need him to actually walk outside for any period of time… he obviously must wear shoes!!!

We actually had a little incident with one of members of staff at Cammy’s school just before Christmas. I never spoke about it at the time on the page, and don’t really want to go into too much about it just now either, as it is over and done with now… but someone who works closely with Cammy thought it was ok to TIGHTLY tie the velcro straps on his school shoes in knots on his feet, to try and keep his shoes on!!!! …Cammy had been kicking off all the way back from school in the taxi, and was VERY upset when his transport handed him over to me. Lots of screaming and punching himself once I brought him into our own car… it took me ages to try and calm him down enough to see what was going on, and once I removed the tight shoes, he instantly settled down again!!!

(To say I was livid would be a major understatement!) … but I messaged Cammy’s teacher that evening, and she dealt with it straight away… the next day all of the staff were advised again on Cammy’s sensory sensitivities, and made aware of the effect something like this can have on him).

I knew straight away that it wouldn’t have been Cammy’s teacher, as she knows him so well, and is very attuned to his needs.

All sorted now though… just had to mention it to you all I guess. Otherwise, why have our page???

We need to share the ups and downs, the fights, the struggles, and of course, the triumphs…

We all go through things like this with our kids though… ALL of us. (No-one is alone in this!).

And again, this is why there can never be too much awareness!!! People just don’t think something as simple as socks and tight shoes could stress a kid out… but trust me, it can!

Anyway, it’s done with now, as I said.

The strange thing is aswell… since going back to school this week… he has actually been keeping his shoes on!!!! even ages after getting home from school!!!??? (Very strange!!!)… but hey, ho! (Hopefully we are on the right track now though!).

So, we are back folks… not quite on full form, ’til I get a damn phone… but we are back!!!

Thank you all for sticking with us, and a huge welcome to all of our new followers… (we aren’t usually this quiet… honest!) 🙂

Hope you all had a lovely time during the holidays… and all the very best to each and every one of you for 2019!!!! (Hope it’s a good one!).

Love C .x.

 

 

 

 

 

 

So, I’m not going to lie to you all… this little guy has really struggled over Christmas Day this year… much more than previous years.

He was okay up until Christmas morning… then it all just went slightly downhill from there really.

He got up early on Christmas morning, along with his 2 sisters, and 4 brothers… they were all excited… hyper actually! 😂

All so eager to see what Santa has brought for them. Cammy was also very happy at this point… but I think it was just because it is very rare for everyone to get up out of bed at the same time as him. (He found this to be really funny!) … Giggled away to himself, and bounced on our bed, as per usual.

He took my hand, and followed everyone happily downstairs. However, once the living room door was opened it was a different story. 🙈

Cammy sat close to me in amongst the noise… squeals from the other kids, and rustling from all of the unwrapping.

Now, usually, Cammy LOVES to unwrap presents… so, I didn’t think he would actually need much prompting to open any of his own… but nope! He just ripped a couple of corners of the presents I was trying to help him open… had a quick look at his favourite presents from this year… (his egg chair from Ikea, and sensory light up cushion), then he retreated into the kitchen, away from the chaos.

Once I gave him his ipad though, he seemed better, and came back through to sit beside me on the rug… temporarily back into some kind of relaxed and happy state.

He just ran around for the best part of the day… once he had recovered from the morning. He had a good look at what everyone else had got from Father Christmas, ate lots of chocolates, played some more You Tube videos on his ipad, had lots of spinning fun on his new egg chair, and so on.

It was really once it came to meal time that I felt for our wee boy.

He refused to come and sit at the dinner table again. So we tried taking his food through to him in the living room, and placing it both beside him, and casually nearby… hoping he would maybe even graze from the plate… but no… he just pushed EVERYTHING away. 😢

One by one, the little kids began coming back through from the dining table to sit beside Cammy, but he was quite happy on his ipad, and just ignoring what was going on around him.

The only time he actually decided to come through to the kitchen, was just to help himself to a couple of apples out of the fridge to eat!!!!!🙈

So, basically, our little star chose to sit on his ipad for the whole mealtime in the other room, to try and block out the noise coming from everyone, and to avoid the busyness of the kitchen. And yes, he ended up having apples for his Christmas dinner!!!!! …Point blank refused everything else!

Oh yeah, and we did the meal all over again on Boxing Day.

I managed to sit him down for all of 2 minutes at the table, but once everyone started to fill their seats… he climbed out, and disappeared through to the living room again. And this time… he only came through to take some bananas for his dinner!!!! 🙈🙈🙈

😢

So, folks, as you can probably already tell… if there was such a thing… my one and only Christmas wish… would be for our gorgeous little boy to be more involved.

(to know how loved he truly is, to actually enjoy spending time with everyone… and to be able to eat his Christmas dinner).

The other kids had fun though, and Cammy seemed happy enough… happy to just have Christmas in his own way. ☺️

…(Just Mummy And Daddy that felt sad for our little man I guess). 😢

I hope you all had a lovely time with your nearest and dearest though. 💕

Love to you all, and Happy Holidays folks!!!

❤️❤️❤️ x

Why is it that special needs parents always feel so left out?

Is it because we have so much on our plate… compared to the ‘average’ parent?

Or is it because of medical issues our children may have?,  making them ‘different’ from the ‘average’ child.

…Or is it purely because we are just so busy trying to survive???… keeping our kids safe, happy, healthy, fed, warm, attending appointments, doing what we need to do for them physically, (sensory diet etc), and medically, and on top of all of that… having to fight the system for EVERYTHING that they need, and are entitled to, for moving forward and helping with their care.

We do often feel like the odd ones out in the normal everyday mundane things though… like the school run… listening to other parents chatting away about dance classes or swimming lessons… We can’t do anything like that with our children, (right now at least!).

I spoke before about many parents never having a break… even just purely because either they have no support, or because they can’t simply phone up friends/family for a babysitter… their child may have an hour long meltdown over the fact that they are not the ones putting them to bed that night, or that their routine is now completely messed up, upsetting them for days!, or even that the babysitter just doesn’t know the child well enough to know exactly what it is that they need when they try to communicate something to them… leading to self injurious behaviours… and also leading to the parents trying to avoid something like that happening, (at all costs!)… so they just don’t go out atall! … resulting in 2 very tired and stressed parents. Which again, is just not good!

Many of us also tend to avoid certain public places to take our kids, or maybe just during busy times… Again, to avoid the stares from others, or to avoid meltdowns, or even just to avoid upsetting our kids, which can then obviously bring with that its own problems aswell.

We can’t just drop everything like lots of other people can. Maybe meet up with friends, go for a coffee, or go to the cinema to watch a movie… We are usually our children’s whole world, and if we leave them… it really does sometimes seem like the end of days to them!

We have been very lucky with Cammy recently, he is fine for now with his Granny taking care of him and his siblings, allowing Mum and Dad to get a night out or 2, but when he was younger we didn’t have much of a break, and he had very bad separation anxiety.  If I ever had to leave him with Grandparents, or a babysitter, I literally had to run out the door, and the same when he was at nursery school… (whenever I left him there, he would just scream and scream… obviously making me not even want to take him atall!)… and this was all before we even knew that Cammy was actually autistic.

It can be hard, of course it is! but we all just do what we do for our kids… just like everyone else does! and we would die for our children… just like everyone else would.

So not having a ‘normal’ life, just doesn’t even come into it really.

We do, however, have off days, when we feel like life is just passing us by, and while we struggle daily… time just gradually slips away from us.

I think what I’m trying to say is that everyone else seems to be able to do normal, everyday things, without even a second thought, but we just can’t. Our lives are VERY different from the ‘norm’, and we accept that.

I personally, wouldn’t change a thing! … Our boy has taught me so, so much about life and unconditional love.

What it is to be ‘different’. How each of us is truly ‘unique’, and should always be treated as such.

He has so much love for each and every person that he meets, regardless of who they are or what they look like… something many people could learn from nowadays.

And he also shows me every single day that love needs no words, and that there is so much beauty to see in this world of ours… we just have to know how to look for it.

(I sincerely hope that you all find it too).

xxx

 

So, I’m going to just say it how it is folks. It’s hard right now in our little family bubble.

I’m not a moaner, or someone who seeks attention of any kind from people. I just get my head down, and get on with it… that’s just what I do. How I was raised, I guess.

But having this page, has kinda taught me to open up a little, and to let people in. Especially other special needs parents.

So many of us these days, are going through very similar things behind closed doors, but no-one seems to talk about it, or try to understand.

It’s very much… each to their own. And me personally, I don’t like that. (Hence why I started our page… to try and share, and help others). I sincerely hope that it works like that though!!!

So, in the past, on our page, I’ve talked lots about our house being in such a mess, and this is obviously common in autism households anyway, but with a large family added on to that, it is just mayhem at times.

Don’t get me wrong, I wouldn’t change a thing about our lives. I love our family with all of my heart, and I love my life.

(All I would change, if I could, would be the daft things, like, the lack of space in our home, and not enough hours in the day to get things done!)… like, when you run around after the kids all day, do school runs, feed everyone, bathe everyone, do homework with the bigger kids, and try to organise a house that is already in complete disarray. With no ‘extra’ time or money to decorate or declutter the mess… 😱😱😱

I would never try to blame any of the kids for the mess at home, (as it’s me as much as them!), but when you see the magnitude of what actually needs done on a daily basis, it really is overwhelming… And you start to snap at the kids, and hubby, and you become a version of yourself that you don’t like very much.

And also, when you have the ‘everyday’ things like this going on, and add to that Cammy’s autism… his lack of danger awareness, constant sensory needs, food fixation, ipad addiction, self injurious behaviours, and general frustrations from a complete lack of any direct communication… it really is hard to deal with a lot of the time. 💔

Some days are just ‘get on with it’ type days, and others are ‘drag yourself out of bed’ to do it all over again days.

I don’t say any of these things to call out Cammy on anything, of course not! He is our son, and we love him regardless of anything he does, or ways in which he acts… and of course we have accepted autism as a part of our lives now, we have embraced it, (as autism is also part of our son)… Cammy would not be Cammy without it!!!

But sometimes it’s just tough.

…And it’s ok to say so!

My hubby also works full-time in a VERY physical labouring job, and any additional help from him at home is just so difficult to ask for when he is so physically exhausted after work, that he is falling asleep as soon as he sits down… and weekends at the moment aswell are just ‘no go’ zones with everyone being so exhausted from during the week. (I mean, add to that, sleep deprivation from the little kids night wakings, or when Cammy pulls an all-nighter… it’s just rough! It really is guys).

And many autism parents struggle … I mean REALLY struggle. And we just get on with it!

Sometimes folks, we just need to say how we feel though. To vent even. To just let it out.

And then, at least some of the stress can begin to be released.

We have been very lucky the last few months to get a night out, or overnight stay somewhere, while Granny takes the reins for a while, and this really has been an absolute lifesaver for us… (Thank you Granny!)… but lots of people out there aren’t so lucky. They have no support, and no breaks from it all. 😢

So folks please… If you are a special needs parent, or you know one. Please, just open up to eachother!!!

The statistics are just frightening otherwise. We just need to talk about things like this.

Be open guys. And just be kind to yourselves.

(Pic was from this weekend… we got a night out in Glasgow… again, all thanks to Granny) 💕

Love to you all. ❤️❤️❤️ x

Jude, is our youngest son, and our youngest child. He is now 19 months old, and we are now having a BIG leap in his speech progression.

At this age children always seem to ramp it up a gear, and you hear new words every day… which is most definitely what we are getting right now with Jude.

This has happened with all of our children at this age, except of course, for little Cammy.

At that age, Cammy had only a couple of words… things like ‘Mum’, ‘Dad’, ‘fruit shoot’, ‘juice’, ‘ball’, ‘what’s that?’ And even ‘Spiderman!!!!’ …all of the main things that he needed to know at that age really.

He quickly got nearer to the age of 2, and very slowly he began to lose the words that he had already learned… and we never heard any new ones.

(I should say that Cammy is our 4th child, and it was around that time for me, when alarm bells started to go off in my head!)

I asked the speech and language therapist Cammy started to see just shortly after this period in time, to try and explain to me how this could happen… she said that basically, a baby has a reflex of copying and learning from his/her parents at such a young age, and particularly with speech.

That reflex very slowly decreases, and the child is then supposed to ‘take over’ with the speech, by learning to listen and learn on their own… therefore, making that speech reflex redundant.

With many autistic children, when the ‘reflex’ stopped, so did the words, and the child decided that they no longer needed to use the words for communication.

This is basically why there are so many regressions noticed around the age of 18 months to 2 yrs, as this is generally when the ‘reflex’ will leave the child.

Very fascinating… but also very upsetting to try and get your head around when this has happened to your own child.

The same lady, also explained to me that non verbal autistic children must first be brought out of their own world, and brought into our world, with intensive interaction etc, before they can be taught a different form of communication, to either ‘bring on’ or ‘replace’ the speech that they lost.

This is the stage we have been ‘stuck’ at with Cammy for around 2 years now… and with the help of many intensive interactions at school etc, Cammy is now very aware of his surroundings, and will also study peoples faces when they talk to him etc aswell.

We just need to find the most suitable communication for him now! … and it isn’t easy… trust me!!!

Also, tonight, another MASSIVE milestone for him… he has actually started ‘seeking out’ myself or hubby, Brian, to take us upstairs and have fun on the trampoline or cuddles in his bed… he is seeking us out, taking us by the hand, and leading us upstairs!!!! This is HUGE!!!! He ‘wants’ to have fun with us now! … not preferring his own company all of the time, as he most definitely did lots before!

Our boy truly astounds us every single day… and as always, we will forever be hoping and praying for the day when it all just ‘clicks’ for him, and his communication will come on in leaps and bounds.

…The day when he finally finds his voice.

❤️