For all my new readers hello and welcome, I want to share a bit about Gnome. He has mobility problems and is unable to sit and stand . As to why , well that’s yet to be diagnosed.
Today he has been a foul mood , nothing has pacified him, he constantly screamed, which gets me down as there is no let up in it. I could see earlier today how this evening was going to pan out, well I thought I did. After a major temper tantrum his dad was picking him up to put him on his knee. When it happened……….
Gnome in his temper put 2 feet FIRMLY on the floor he put his feet to the ground. This is the first time since he was born he is now 14 months. My baby boy stood for a few seconds. That certainly makes up for the rotten day
Last week I decided that our family of 6 needed a holiday, we haven’t had a holiday in 2 years due to money and circumstances. Anyway in my wisdom I thought why not start looking how much holidays are, that’s easier said than done. First we have to decide where we want to go.
We did used to go camping in Cornwall which the kids loved, but last time we went we were met with quite a lot of hostility from the other campers, who couldn’t understand why the kids screamed even though I told them why. Or why i used the disabled toilet/shower block, that got a few tuts and moans. Anyway, back to finding a holiday. Camping is definitely out as it would get too cold for Little Gnome who has problems holding his body temperature at times and gets very cold, easily.
I looked into Haven sites but I can see a massive problem there, the kids running up and down the caravan it would make so much noise. I used to live behind a caravan site and believe me it’s not much fun listening to a herd of elephants running up and down a caravan all day/night. So I wouldn’t wish that on anyone. Plus we wouldn’t get the benefit of the likes of Butlins and Haven as we wouldn’t be able to do most of the activities with the kids, who wouldn’t cope. I think as time goes on you know what a child with autism is likely to cope with.
So that’s , Haven, Butlins and all those sort of places out, camping is a no-no. What is left well there are boating holidays, mm 4 kids on a boat nope that’s out, don’t fancy them as they try to lean over the side or fall in. What else well there is abroad but they want silly money because of the size of the family we need 2 rooms well we just haven’t got that sort of money.
So it looks like another year and no holiday oh well just hope we have a decent summer so they play in the garden. Ideally I would love to take them to Disneyland in America, as they all love Mickey, Daisy and all things Disney. They would love to meet Mickey and all his friends
Does anyone know the lottery numbers so I can fulfill their dream , lol.
So booking a holiday with autistic/special needs children isn’t as easy as it seems.
Today it has just been one of those days, the kids are just bouncing off the walls, not sure if its excitement for Christmas but it was definitely out of the ordinary. I’m not sure what is going on one winding the other up and just snowballing out of control.
Well today for me was the absolute last straw, I have warned them constantly about tormenting Marley the puppy and waking their baby brother up, but still they keep doing it. This continued all day and they were banished upstairs where I thought they would settle down nope . Round 2,3, 4. Then I can’t remember what they did but that was it I blew my top, I just shouted at them all . Did it do any good nope, not really but it made me feel a lot better.
It gets very stressful having 4 kids but then add to the mix 3 of them who have 3 different lots of challenges then at times it does get really bad and my stress levels just creep up. There is no cure for their conditions, it’s not something you can shut the door on either. It is there 24 hours a day 7 days a week. Life does get bad in the Savvy household but some how we over come the obstacles and get on with it.
I was sent this text last night and you know it’s just how I feel at times. Apologises to who ever wrote it as I can’t link it to you.
Strong persons know how to keep their life in order.
Even with tears in their eyes , they still manage say “I’m ok” with a smile.
You know on here we all ask each other how we are, what sort of day we are having, but does anyone really say how they feel or we like that strong person keep it all bottled up. The British stiff upper lip and all that.
I was sat this afternoon in the middle of the room just sobbing my heart out, for that few minutes I felt like a very scared child that just wanted a cuddle and someone to say they would make it better.
So next time someone says they are fine or ok , they are most probably trying to be a strong person. So just give them a few kind words, it only takes a few minutes and it could stop them from having their own meltdown.
I think I know what might have triggered all this it is a full moon tonight and they always seem to play up more when it is a full moon. Perhaps there behaviour is linked to that.
We were sat in the car waiting to pick Pinkie up from school, and it was sunny all of a sudden it started snowing and within minutes the whole appearance of the road and the scenery around changed. This made me think of how autism affects the way an autistic person sees life and the world around us.
How one minute things appear so normal then the next minute it could be as bad as if a firework is going off and everything exploding . A major meltdown can be caused over the smallest thing . When talking to the kids I sometimes notice that they are distracted, when I ask what is wrong? they say there is too much noise and it is too nosey. The best way to describe this is to imagine a room full of people are talking to you all at once. You just could not take it all in, it’s too much for your senses to cope with. Then its like when they I take the kids to a new place they look round taking in every single detail, almost making a real life photo of it in their mind. Who needs James Bond with his all his kit and gadgets when you have an autistic child and a photographic memory.
Is like everything has to be set so regimented, tell you Perkie would be perfect for the armed forces as he loves things to be nice, neat and tidy. He plays with his cars on the carpet and spends hours just lining them up so they are all in a perfect straight line, it is quite amazing to watch. Plus I think he could tell you if one of his cars was missing.
Now Christmas is causing a big problem as the kids cannot comprehend what is going on, they are getting over excited which in turn in bringing on more melt downs. For example, Perkie had a Christmas party at school he was very excited, but then as soon as he got home he burst into tears a major wailing. When I asked him what was wrong it was because the staff at school did not put his pringles on a plate and forgot to put them on the table
As a quick note can I just say thank you to everyone that has read my blog, RT on twitter, shared on Facebook you have all got me into the Top Blogs on Wikio. I am currently 188 .
To me this means that people are being aware of autism and special needs and that means a lot to me.
So thank you all I hope that you will continue to read and enjoy the blog
Life is funny at times. You go along life getting on with your everyday routine everything going swimmingly then bang something happens to shake this routine and all hell breaks loose.
This happened to the Savvy household this week and to say the Sav-ettes haven’t coped is an understatement. This week sort of started off all wrong anyway with Pinkie not being invited to 2 parties, it sort of set precedence for the week, which as just got worse as the days have gone on.
Here’s what happened to upset the status quo. Mr. Savvy has been doing nights this week, which is unusual as he normally works days. Well this upset the kids because of that change to their routine. So much so, that Pinkie was up the other night absolutely hysterical and wouldn’t go to sleep as she was convinced that there were bears in the room . No matter how much I tried to pacify her and tell her that I had sprinkled fairy dust everywhere she wouldn’t settle down. Cue…. Mr Savvy rings as she is screaming this prompts him to come home to settle her. All settled he returns to work .
An hour or so later Mr Savvy returns home this time absolutely crippled in pain and struggling to walk. He tells me he has hurt his back and that work has sent him home due to him being in so much pain. The following morning the kids come downstairs unaware of the events in the night, they ask why daddy is home so early. So we explain what’s happened. This then prompts a 101 questions. This was just the start.
When they returned home from school , Pinkie had a meltdown promptly followed by Perkie kicking off. Diva absolutely in bits that her dad is suffering and to add to the mix Little Gnome wouldn’t settle at all and constantly screaming. All this due to a change in the routine. Thats a quirk of autistic children they love routine if that routine is broken all hell breaks lose.
I have talked about the kids having meltdowns and how devastating this is but what’s to stop parents having a meltdown. A person can only take so much then something has to give .
I have been under a tremendous amount of stress just recently. Let me tell you a bit of what’s going on.
We well start with Little Gnome, he is now 10 months old, he isn’t sitting up, rolling, crawling nothing. Everyone has been saying he is just slow but no it isn’t that I wish it was. He is under the Occupational therapist for exercises and now she has major concerns how he extends his body and goes rigid as if its a muscle spasm.
Then he isn’t on solids we have tried absolutely everything but can’t get him to eat al he will do is drink his milk. I feel he has sensory issues as he will only have certain dummies and I have noticed he will only put certain things in his mouth.
So this is a major worry.
Then there is Pinkie she is having problems with toileting to the extent where we had to take her to the doctor’s to check she hadn’t got an infection. All tests came back clear but she is now been referred to the incontinence clinic at the hospital so yet more appointments.
At school she is doing ok but sometimes she struggles to listen to what the teacher is saying or wanders off.
When I pick her up from school thats when the trouble starts with her as she holds it together all day then the bubble just pops. Yesterday she started throwing stones and before i could get them off her, one nearly hit a car. So told her off which caused her to sit down on the path, whilst she shouted abuse at me. Of course you get the looks off the other parents.
Perkie well he has just changed so much .Every Wednesday night his dad works a late shift, even though we have explained to work that the kids don’t cope with change they won’t budge on this one. Anyway last night was a really tough night. Perkie was throwing things especially at me, he did hit Little Gnome with something so I sent him out of the room. I was so wound up with their behaviour. I know it was all down to the smallest thing of the change in routine but still doesn’t stop me being angry and very sad with him and his behaviour
Do you know what all this has made me feel so angry and upset inside. I feel like screaming, throwing things and trashing the rooms
I original wrote this post as a guest post but I would like to share it with you as I think its so important.
I would like to tell you about my son’s journey in the past year. What’s so special about this I hear you ask? You see its special as my son is autistic. He was diagnosed at 3 years old with autism and global under development and hyper mobility.
Let’s begin the journey it started a year ago when he began to attend a special school. He started school unable to read, write or talk. His idea of talking was continuous high pitched banshee screams for hours on end. He was unable to communicate.
We had started working with a speech and language therapist who introduced him to PECS and Mackaton, this started to break down the communication barrier, and he was at last able to communicate with us. His use of PECS and Mackaton ( type of sign language) was very basic when he started school.
Soon after starting he began to come home signing new words and using PECS more. By Christmas he had began talking and interacting more. Each day he was improving and his confidence grew. Then he came home and read his first ever book to me, what a real lump in the throat moment that was and a day I thought I would never see.
A year on we went to a parent’s consultation at the school to be told that he was really excelling at school and they now want to look into integrating him in a main stream school part time to begin but the goal is for him to finally move to a main stream school altogether.
So no matter how bad things seem there is always hope
Posted in Autism/autistic, Change, Diagnosis, Everyday life, Pictures, Reading, Routine, School, Screaming, Strageries, Timelines