I have had constant ideas over the past few days of my next perfect blog and I have written and rewritten many things. I ended up deleting them all.
Here is a quick introduction. I’m Sam and I am a mummy of three amazing boys. Jack is my oldest and he is 13, he has been diagnosed with Autism, ADHD and global development delay. He has severe aggression and can be extremely violent. He also has limited speech. Daryl is 10, he possibly could have Autism. He has Epilepsy, Global development delay. Severe speech and language problems and he too can be aggressive. Kyle is 2 years old. He’s the baby of our family. He is showing no autistic traits yet.I am married to Andy who is an amazing daddy to Kyle and step dad to Jack and Daryl.
I have had numerous meetings over the past week for my boys. A meeting at Kyle’s nursery, a meeting with social work and respite provider. Finally a multi agency meeting for Daryl which ended up having the most positive outcome.
Over the years I have had many battles with professionals to get the help my boys so desperately need. I fought for a house when my relationship ended with Jack and Daryls dad and had to live with my parents with my two young boys. I fought for a social worker who has been a shining star at times. We fought together to get respite for the boys which has allowed them to have weekends and weekly activities away which allow their personalities and abilities to shine through. I fought to get a psychologist and secondly a psychiatrist when the last option to help Jack who suffers huge anxiety due to his Autism and ADHD to go on medication. It has been a long journey and an emotional rollercoaster.
12 years it took me to finally get a diagnosis for Jack. He was diagnosed with Autism on the 27th March 2015. I had been fobbed off with he has Autistic traits too many times and I’d had enough. 12 years of referrals to different professionals, tears, anger,sheer frustration, fighting and finally someone listened. Things were eventually put in place and the Autism assessment was done in a morning meeting with myself and after observations in school and home environment. I will never ever get over the feeling that day when Jack finally had a diagnosis. It was a massive weight lifted from my shoulders but also the heart wrenching realisation that my baby had now been formally diagnosed with a lifelong disability. Children who are diagnosed with autism grow up to be adults with autism. Nothing could have prepared myself for that moment.
I am now in the process of a new battle. Getting appropriate council housing for our family.
It has been consistent fights, tears and tantrums since the boys were born as I got the boys everything they deserved and I’m positive I will fight a few more. I promise Jack, Daryl and Kyle I will always be your voice. I will never stop fighting. You are my World.
The moment a child is born, you immediately become their world. You are now in charge of this amazing tiny human whose head fits into the palm of your hand. It is now your responsibility to nurture, teach and make sure that you prepare your child for the future. Parenting is hard. I was 19 when my oldest son Jack was born. I was 19! A 19 year old has completed school, made plans for the future and most likely at college or university or has a job, learning and making a living in this world. When I was a young teenager I desperately wanted to be lawyer. I was very good at seeing things from both sides, that could be argued against in a court of law.
I applied to some top Universities and got accepted. As long as I got the grades, I’d be moving to student accommodation in Edinburgh. It was the most exciting future.
Due to not studying the way I really could have I failed those exams. It was the most disappointing time of my life. I cried, a lot and I felt like I let everyone down. Looking back I truly let myself down. I left high school that summer and I found out I was pregnant. It was a very new, scary and exciting period of my life. I loved being pregnant. All the appointments, scans and feeling my baby grow, move and kick inside of me.
He was two weeks overdue and I desperately wanted to meet him. He was was born on the fourth of May by emergency c section. He had kept me in labour for around 19 hours before he made his appearance into this world. He cried. I got him into my arms for cuddles and I knew then everything was going ro be ok. He was the most important person in my life. I made a promise to him there and then that I would never let him down. I think I have kept that promise.
He was about 2 years old when I began to fight for what he deserved and what he needed to progress in this world. Nothing is easy. I have fought for him for all of his life.
Living with autism is not easy. He has required support in most ways since he was a baby. He didn’t walk until he was two years old. He had physiotherapy to support him to learn to walk. In mainstream nursery they couldn’t support his needs and he was very behind his peers. He was soon transferred to a special needs nursery and then onto primary school where he continued all the way through until he began high school last year.
Autism wasn’t a word I was familiar with until my son started primary school. Unfortunately it took 7 years after that to get him diagnosed with Autism and Adhd. Jack amazes me every day. I am so proud to be his mum. He is funny, sweet, loves playing offices. He also knows most WWE wrestlers and can hear me if I whisper from upstairs. He will need support all of his life and I’m here to make sure he gets what he deserves.
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.
There was a story in the news recently that really upset me. It was about a singing sensation who had a very public meltdown. The media and it’s usual tinted approach reported this amazing and talented person had a tantrum. This report absolutely appalled me. It is well known this person has special needs. Considering it is Autism Awareness month it astounds me how small minded and judgemental people can be towards individuals with disabilities. Ignorance truly is bliss.
This reminded me of a shopping trip Andy and I had with the boys a couple of years ago. We had taken Jack and Daryl to Tesco to get some shopping for dinner. Everything was going well until we entered and realised Daryl hands were all sticky from the negotiation sweets we had given them in the car on the adventure to the supermarket. We wanted a smooth transition, because both my boys find transitions very hard. He required to have his hands washed.
Andy looked at me and asked
” Will you be ok with Jack?”
“Yeah of course I will”
I smiled and Daryl and Andy walked away to get cleaned up.
Jack and I collected a trolley and re-entered Tesco. I immediately saw his facial expression change to panic and anger. I tried to soothe him by telling him we wouldn’t be long and we were only in for a couple of things. My words weren’t registering, they weren’t helping and I wasn’t soothing him. He was having none of it. He then threw himself onto the cold Tesco floor and refused to get back up. He was lashing out at me, swearing and shouting.
It felt like an eternity and I could feel eyes boring into the back of my head. A quick glance at the audience confirmed the judgement. Eye rolling, tutting and shaking their heads at the young mum who apparently couldn’t control her child. I was too upset trying to make things better for my son I said nothing to them.
Jack has autism and huge sensory issues. This was torturous for him but I felt sometimes we just have to do things and get on with life. I won’t always be here to protect him from the eye rolling. Jack doesn’t care who is watching him or if he is getting a reaction. It has to run its course. No one can control a meltdown and it’s heartbreaking to watch.
It felt like it was going on forever when a Tesco assistant appeared beside me asking if I need help. My pleading eyes must have gave me away even though I was shaking my head. With her kind words she managed to get jack off the floor. As she did, Andy and Daryl were walking towards me. We managed to finish our shopping without incident.
I will be forever grateful to that special woman in Tesco. Thank you from the bottom of my heart. You probably have no idea what you did that day and how much you helped my son. It makes me truly thankful that there are still kind and understanding people in this world.