I can’t leave my children alone

I do not wish to bore you, my readers, with stories of my own childhood. However I just want to tell you this story and encourage you to read my latest blog. 

When I was 14 I had my own rather large group of friends. In my school year I spoke to almost everyone, mostly all of my classmates. When I was 14 I had responsibilities, not just in my home but school and towards my classmates. My mum and dad could have a lie in at the weekend, they could depend on me to get ready for school, put a washing, iron my own clothes and keep my bedroom “tidy”. I was permitted to go out with friends and even have sleepovers.
Now I’m a mum of children with disabilities, it is a completely different World…..
Jack is fourteen. He has been diagnosed with Autism, ADHD, GDD and severe behavioural issues and although he has the body of a young man, mentally he is nowhere near 14 years old. Yes that makes me sad to no end. Daryl is eleven years old. He has Epilepsy, GDD and also severe behavioural issues.

I cannot leave them unsupervised. I would love for them to have the same responsibilities as I did but it’s just not appropriate or feasible in any circumstances. When given the opportunity my two oldest boys will destroy anything they are given unsupervised access too. I spend a fortune on bathroom products because my boys ruin everything due to their sensory needs. In the past three years Jack and Daryl have broken two front windows, a glass panel in my front door, six televisions, six tablets, PlayStation Computers, sky boxes and also furniture…

Since last August Daryl has completely changed and I am struggling. In fact myself and my family are. Lately it has been truly difficult and testing times. Other than breaking things in the house, he is also targeting his toddler wee brother. Kyle is only two years old and just wants to be Daryl’s friend. Kyle adores him and follows him around. 

I have begun to take Kyle with me if I have to leave them together. If I don’t there is a massive probability that Kyle will be hurt. It is truly awful. I follow them everywhere just to make sure they aren’t eating anything they shouldn’t or breaking household products or ruining things. 

It is a truly stressful living situation and my boys need supervision at all times. Hopefully in a few weeks it will ease slightly as we will hopefully be moving house and all of my children will have their own space.

Xxx

Dear Andy, it’s Father’s Day soon….

It has been a shitty time recently I know. For the past year or so it has been truly testing times for us. We have been married for almost two years now and you are my rock. You are the one I love, my best friend, my partner in crime and the one person I depend on most in my life. It has not been been an easy journey. You were only 22 when we had our first date. I was a single mum when we met. Not just any single mum. I was a mum with two young children who had special needs. From the moment we met, I was completely honest about my children. We became amazingly close and you knew everything about them already. You were my bestie. We spoke on Facebook, text and phoned each other almost every single day.

You were very young when you became an important figure in my children’s lives and you have never let us down.

We met on Facebook. Now I know you hate the page that we met on but I can truly say if it wasn’t for that famous DJ and his debateable page we would never have met. I know people will be rolling their eyes at this but I will be forever grateful for “internet dating” 

When  we met it was usually a comment this DJ had offhandly made to get huge clicks and likes, a debate going to interact with his followers. Massive clickbait. But it worked every single time….He was an amazing “fisherman” and well, to be honest we all got reeled in. The people on that page that I got friendly with had arguments about the teams we supported, why we supported them and why we defended them. I met a few amazing people on that page and I’m pleased that I’m still friends with them now.

Andy you asked me out on a date and I said yes and I then I horribly and ashamedly let you down because I thought you were too young for me and we wouldn’t have anything in common. How wrong was I? We finally went on our first date in the 27th April 2012. You met my boys soon after. We were so close already and it didn’t scare you taking on my children from a previous relationship. You stepped up. You embraced my boys. You took the time to get to know them, play the daft games, play outside, set up their tablets or computers. You even organised their birthday presents. 

I truly think that you are completely amazing. You are almost six years younger than me yet you act more and more mature than me. When I tell people of our age gap. I always get the same same reaction. We look and behave the same age, sometimes. You took on me, all of us, I was a single mum and had her two kids. My two children with additional needs like Autism, ADHD, GDD, severe behaviour issues and Speech and language delays. Well you fell in love with us all. I’m sure folk ask how can you take on all that baggage? The truth is that you didn’t need to….. Andy you wanted me and my kids and now we have Kyle…. Our family is truly complete and I love you always xxxx

What’s Autism Got To Do With Elections????

I have barely slept for the past few weeks since Theresa May announced the General Election on the 8th of June 2017. Now I’m positive you’ll be asking why you worried? It doesn’t affect me. What has the Election got to do with me? Please, please bear with me as I explain. Voting for the SNP councillors in the local Government council elections have nothing to do with supporting Independence. Seriously I know you’ll be shaking your head aye right. They honestly don’t. These elections are preventing a free for all for the Tory Government to do whatever they please when it comes to the upcoming Brexit negotiations….

Scotlands First Minister has been very clever in putting Indy Ref Two on the table before Brexit Negotiations. How can Scotlands imports and exports be negotiated if the EU don’t even know if Scotland will be part of the UK if Independence is voted for. .

Please get out there and vote!!!

I spoke to a very very close family member recently. The local SNP MP and SNP councillors were canvassing in the area and knocked on their door. I know the MP. I sent an email to his office not expecting a reply at all. I explained to him in an email my families dire living conditions a few short weeks ago. He stood up for my family and I got an outcome I was completely happy with.

So….. what’s Autism got to do with it? The Tory government have cut disability benefits and then imposed sanctions on those who need support with living. Thousands of benefit claimants were then interviewed by a private sector company who claimed these people were fit for work. Thousands of people have died due to these sanctions and it was a fight to get the figures published. The Tories have removed thousands of lifelines in the form of mobility cars. People are losing the right to living their lives freely. If I hear the PM use the line Stong and Stable leadership once more, I will Scream. She is a well trained robot. The Conservative Government have also imposed a two children tax credits limit and also imposed the ” rape clause” The sad thing is women who have been raped will not want to prove this. It makes me so sad that individuals are punished to benefit the rich corporations avoiding their Tax obligations in this country.

It is well documented that the Tory government will protect those who are rich and take away from the working class and disabled people. Jack and Daryl will need support for the rest of their lives. Let’s face it, I am not immortal. I wish for an independent Scottish Country because I truly believe when I am not here, my children will be protected….

Please do not waste your vote voting for the Conservatives because you dislike Nicola Sturgeon or the SNP. I am personally asking you to please use your vote and protect the most vulnerable in our society. I am asking you to protect Jack and Daryl… I am asking to you vote SNP Councillors.

Autism Awareness Day 2017

World Autism Awareness Day 2nd April 2017 is upon us. This day is to honour every single amazing child and adult on the Autism Spectrum. Autism is a life long condition that affects language ability, social interaction and how they see the world around them. There is no cure for Autism. On Autism Awareness Day people will wear the Autism ribbon, fundraise for their charity and many landmarks across the World will light up blue.

Autism personally affects myself and my family and it is extremely close to my heart. My oldest son Jack has been diagnosed with Autism. He is 13 and he was diagnosed with Autism on the 27th of March 2016. I will never ever forget that day. It’s hard to explain because I was so relieved because we could finally take the steps forward to get Jack the support he needs but I was also so upset too, although I knew what the prognosis would be. I suppose its like the weight of the world has been lifted from my shoulders and yet a huge emotional wave hits me at the same time. The realisation that my child will always need support to live his life.

I haven’t told Jack that he has autism. Although I know that we will need to have that conversation I am not sure if he will truly understand what it means because he has various other complex needs. I will try my best to help him understand.

I want to raise awareness of Autism because more and more children and adults are being diagnosed with this condition. According to NAS 1 in 100 people in the UK are affected by Autism which means 700,000 are Autistic. More boys are diagnosed than girls. Girls are better at masking Autism than boys. This could hold them back from getting the right diagnosis and possibly even a later in life diagnosis.

If people are aware then it will lead to understanding and eventually acceptance. Talking about Autism is the way forward and accepting that people are different and not less will go a long way.

Jack is an amazing teenager and hasn’t come across any cruel jibes directed at him. I on the other hand have been on the receiving end of the looks, stares and the cruel tutting while I’m trying to calm him down mid meltdown and get him off the floor when the noises in the supermarket have become too much for him. He is oblivious to it all and I’m happy with that. 

Instead of forcing him into my world I have stepped into his. He has taught me to live in the moment, that nothing is ordinary but instead he is completely  extraordinary. He has taught me to be strong when I am feeling weak. He likes routine, same breakfast, same tv programmes every day. That it is ok to repeatedly watch that youtube video over and over. Even I when I whisper he can hear me upstairs. Now that is amazing! He can remember things from years ago that I have forgotten. He sees the world as good and every person is his friend. I’m working on that one. He shows compassion and wants cuddles ( on his terms) even though the professionals say Autistic people can’t show empathy. I disagree with that one. I believe he loves us, his family, just as much as we love him. I have also met some amazing parents and children that I wouldn’t have met otherwise.

So on this Autism Awareness Day I hope that people will be aware of Autism and also to accept my son for who is. Jack is 13 and he has Autism. Step into our world. You’ll be pleasantly surprised 

Love Sam 

#autism #autismawareness

Don’t you dare feel sorry for us!!

I have had many, many conversations with people about my boys and their disabilities. Jack is 13, he has Autism, ADHD and GDD. He can be extremely aggressive. Daryl has special needs too. Daryl is 10, he has Epilepsy, GDD, speech and language difficulties and he too is aggressive. 

The conversations I have had have been both formal and informal. Friends and family are curious, Professionals have forms to fill out and teachers are with my children Monday to Friday except holidays.This has happened continuously and the look that they have given me is always the same. Head cocked over to the left or right side and wide eyed. “Awe I’m so sorry” or “I don’t know how you do it”. Sometimes they don’t say anything, quickly change the subject but I know what they are thinking. 

I don’t want you to feel sorry for us. My children are happy and healthy and that’s all that matters to me. They aren’t having an unhappy childhood. They are having a different one… Nothing less. 

Please don’t feel sorry for us or my children. In his own way Jack is  extremely happy in his own little world. This includes playing offices and watching wrestling. He loves his tablet. He’ll watch the same video over and over.. That makes him happy. Jack is an excellent big brother to Kyle. He’ll play with the toys with him for a wee while and he always knows how to make him laugh and that is special.

Ive finally taught him to keep the volume down low so the wrestling audience isn’t the only sound in the room. I can tell when he’s fed up and wants peace and quiet from the craziness of our family because he gets up and briskly goes to his room. It’s then I know he’s just had enough of me, Andy and his brothers. This is fine, everybody needs alone time. 

Daryl has his own interests and activities such as his tablet,wrestling, building blocks, cars and his top activity is music and dancing. He’ll get onto any dancefloor at a party and does his best to breakdance, dance and jump around like the other children. He enjoys interaction with anyone and would sit for hours showing me or the closest person what is on his tablet.
“How do I do it? My children are extremely hard work and home situation can be stressful. I am lucky enough to have an amazing husband who has taken on two step children and he loves them and treats them the same as he does Kyle. Andy works full time so I am always here for my children.

I do it because I’m their mum, I do it because they need me. I would do anything to support my boys. Most importantly, if I didn’t do it, who would? 

Jack has the type of autism nobody likes to talk about…

I haven’t written anything recently because to be perfectly honest life is quite hard at the moment and it’s been tough to find the time to write anything. 

*This one contains swearing*

After the exciting news that things will be moving forward with regards to housing I was swiftly brought back to reality with a bang. When people hear that someone has autism they could automatically assume that they have high funcioning autism and the child is highly intelligent and excel at a particular subject such as maths, reading or art. Autism is a massive spectrum. Autism is a lifelong disability which affects how people communicate and how they perceive the world around them.

My favourite  saying is 

” If you have met one person with Autism then you have met one person with Autism”

My baby boy is not like that. He has a learning disability which means he can’t read or write. His language and word choices are minimal and most of the time at the moment it’s hard to have a conversation without being swore at. I am completely envious of parent’s whose child will naturally converse, excited conversations about school, teachers, friends. Point by point stories with all the excited actions of the activities. Even on a good day if I ask how school was. I got told to fuck off or you’re a wee asshole mum. I promised myself when I started this blog that I would be completely honest and not sugar coat our life. On a bad day my living room could get wrecked. He’ll throw anything within touching distance.
Bringing up children is hard. Throw two children who have multiple disabilities and capabilities into the mix and it is extremely difficult. Things are limited. I can’t take the boys shopping unless I have support because they would run riot in the shops. Yet when he goes with school he is completely different. I think children in general act up for their parents. 

Jack is extremely violent and aggressive. Most of which it aimed at me. He will occasionally hit out at Andy. Jack and Daryl will fight but he has never hit or even a little rough with Kyle. He doesn’t hit out at other children.

My arms are covered in very light scars from where he has nipped, scratched or pulled at my skin. Sometimes when he’s not in meltdown he will punch me and throw objects. I am not ashamed to admit that to keep Jack safe I have safely restrained him on several occasions. He will usually attack my arms or punch my back as I walk away.It can be difficult to be strong all of the time and there are many days I have cried that all this anger, frustration and lack of social awareness is taken out on me by a 13 year old boy. Some days are so difficult before my husband arrives home at 5:30pm. I also direct him away from others and try my best to calm him down. I rarely manage that on my own. The best thing for Jack to try and make sense of the situation is to be left alone or by using distractions. 

In school he can be aggressive too but they very quickly take control of the situation. The staff are truly amazing and I am extremely lucky to have known a few of the staff for a few years now. As a mum I would do anything to make my son’s life easier and it’s heart breaking to know that I can’t fix everything for my baby.