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? 

I will never stop fighting for my babies.

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.

My Jack xxx

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.