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
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?
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.
This will be my third blog and I thought it’s now appropriate to introduce myself. So…. Allow me to introduce myself, my husband and my amazing kids. I am a 32 year old mammy to three amazing and very different boys. I have three children. The baby of the family, my 3rd born and definitely my last child was born on Rememberance day of 2014. He was also my third section. My newest scar. He is my husband Andy’s first child. He looks like his daddy and has the same schmooshy cheek ripping out of him. It is very clear that Kyle isn’t a baby anymore. He walks, crawls, climbs and he is figuring his own way in this world already. It is a completely different world. Does that sound harsh?
Jack is now a teenager, he is 13. He doesn’t even know the significance of his age. He has special needs. His mental age is that of a toddler. He doesn’t understand social boundaries, personal space or danger. He swears like a trooper and he hits me. I have numerous scars on my arms because of his behaviour, meltdowns and high anxiety. Jack has been diagnosed with Autism, Global development delay and ADHD. It is not easy to live with. He mentally drains me some days because I’m trying to make the world and environment right for him. I try to understand him and his aggression. Jack loves playing offices, phoning people, colouring in the best he can. He is currently obsessed with clothing, soft jumpers, jogging bottoms and socks. I pick my battles.
Daryl is ten years old, he has been diagnosed with global development delay, speech problems and behaviour issues. He is obsessed with playing with his computer, wrestling and figures. He copies Jack’s impulsive behaviour.
In some ways I feel like I am a first time mammy. Kyle teaches me new things every single day. He has walked, most of the time clumsily since he was around 15 months. He walks with confidence now. He babbles, interacts, uses toys appropriately and also has learnt makaton. He can sign yes. He can say mum, dada, dad and honestly he has said Andy. What is Makaton? I hear you ask. Makaton is a version of British sign language but children with additional needs use it to communicate. Jack and Daryl use it everyday.
Jack and Daryl stay with their dad every week. It is during this time I can get things done. I can properly clean, tidy up, go out places like to get Jack’s glasses fixed, without all the swearing, meltdowns and new scars on my arms. The high anxiety whilst driving I avoided that makes my kids lash out when I reverse or change lane on a motorway. I am so glad Andy doesn’t work at the weekend. He is my rock. Jack and Daryl come home tomorrow… my crazy life begins all over again.