Hello and welcome to my post for the Autism Blog Hop.
The hop is now in it’s fifth year, and I am so pleased that my author friends have jumped in and supported me with this whole thing. Thank you to Rachel as well who has taken a lot of the administrative parts from me this year. Which leaves me with just having to write the blog post for my day, the 1st April. Given that I am writing this on the 31 March you can tell I need organizing!
This years theme is *hopes and dreams*. I chose this because Matt has come to a very critical point in his life. He is just about to finish school – a wonderful school that nurtures and helps and is a quiet supporting place. He is moving on to college in September. This is a local college and he won’t be in the main campus, but in a supported ‘life skills’ unit. This will be for three years, and by the time he finishes this I will be 54.
My hope is that Matt becomes more independent with each passing moment.
My dream is that Matt will be happy in whatever path he follows.
We are working hard to encourage his independence – he has his own little apartment in the attic space of our house that has been converted for him with his own kitchen, bathroom, study area, and bedroom. He buys his own food, cooks all his own meals. He walks miles each week around town, he is able to use a bus, and a train, but only on limited journeys. His sense of danger is still terrible – I didn’t talk much about this at all on-line but he was hit a glancing blow by a van a while back – I still think about this every day. Every moment he is out of our sight we worry, but we have to try our hardest to give him the possibility of a future where he doesn’t rely on us. Scary, I know.
In all of this we just want him to be happy.
It’s all you can hope, for any child.
Hugs and kisses, RJ
Charity
I am not really one to share a place to donate, but Matt attends a wonderful therapeutic center two times a week who do amazing work with people and their mental health. This place is a lifeline for Matt and others with autism, along side other adults and young adults who need peace and thinking time.
You can donate here: https://make-a-donation.org/charity/lindengate
If you make a donation large or small, please email me and I will send you a free e-book as a thank you.
Competition
Prizes and lots of chances to win – simply comment on this blog post with your hopes and dreams. This doesn’t have to be about children, or autism, it can be frivolous, or serious. Also feel free to ask me questions about autism, either on here, or via email rj@rjscott.co.uk
Prizes include:
- a $25 or equivalent in your country) Amazon Gift Card
- 2 lots of a $10, or equivalent in your country) Amazon Gift Card
- A signed copy of your choice from my published paperbacks
- The chance to name a character in my next book
- Five ebooks from my backlist
- Early access to my next three ebooks (one week earlier than everyone else)
How did we know Matt had autism?
A post from previous years, originally written in 2012, amended 2014, 2017, and reposted and update here on my new website 2018.
I was asked by a friend online in 2012 “How did we know Matt had autism?”
That is a really interesting question. To the left is a picture of Matt taken in 2016.
The first thing you’ll notice about Matt is that he doesn’t look any different to a *normal child*. He looks like a normal, ‘neurotypical’, child.
He wasn’t born with a label, or a physical manifestation of what was going on inside his head. His birth was a good one. Easy even compared to the pre-eclampsia I had with my first baby. He was born a healthy 8lb3oz and his scores straight away for the normal stuff were perfect. We were out of hospital in less than a day.
B and M were both good babies. Both slept through the night more or less straight away and M was a greedy baby who finished every bottle (unlike his sparrow like sister!)
B was the last of my antenatal group to walk and she loved sleeping, she’s lazy like her mum! But Matt was climbing out of his cot at eight months, and walking at nine months. He was a determined little boy but he was prone to tantrum type crying and he wouldn’t listen to the word *no*.
By the time he was one he was copying his dad (who worked with computers at the time) and he would take a screwdriver and poke it into electric sockets. Not good as you can imagine. LOL.
Physically he was normal, on the 75th percentile and growing well; but his fascination with vacuum cleaners was just starting. He would stare at them, climb on them, take them apart. If he couldn’t get into the cupboard to the hoover he would determinedly try and break in. He would pull at locks and doors and pull and pull until even the strongest locks would give way. Not the locks themselves but the wall, or the wood, around them.
He wouldn’t stay in his room for naps, in fact he wasn’t that interested in sleeping and naps. To keep him in his room to sleep at night we had to literally block him in his room. The room had to be emptied of everything except his mattress and some toys as he would pull drawers out and pull over cupboards such was the strength he found when he was mid tantrum.
His sister is the best big sister a child with special needs can have. Being the sibling of a special needs child is hard. Really hard. It is also rewarding and loving. But at the core it is far from easy.
In the UK, (and I don’t remember accurately at what time – two maybe?), the health visitor is booked to assess child’s progress against a set of *normal averages* that could be expected. Matt was off the chart. In a good way he was physically strong. In a bad way he was physically strong. 🙁 He had obsessions, he wouldn’t sit still, he wouldn’t listen to instructions or learn from mistakes. He was stubborn, intractable, and obsessed. He didn’t interact with other kids, nor was he able to take turns or share.
She referred us to a special child psychologist. At this point we felt like the worst parents in the world. What were WE doing to cause this? Were we not strict enough? Was my post natal depression too bad? The questions you ask yourself are terrible like it is YOUR fault that your child is a screaming mess of chaos. There was no peace from it. Ever. I mean, what kind of normal parents lock their child in a room just to get sleep? But we had to, just for our sanity. He would sit and rock a little, and he took to sometimes banging himself on the radiator, luckily for us these early autistic traits went no further.
When we went to the psychologist, I guess Matt was just over two, he was climbing her bookcase to the ceiling. no joke. Hubby was standing there trying to keep him safe, I was in shock. Then she said one sentence that will live with me forever. She said, “goodness, I don’t know how you have managed for so long without help.”
At just over two Matthew was fitting every single tickbox for Semantic/Pragmatic Language Disorder. But he wasn’t autistic. He couldn’t be. Right?
Then they added the short sentence *with associated social communication difficulties* and that, for want of another explanation is autism.
Matt is the most difficult, most rewarding, intelligent, exasperating, normal, not normal, child ever. He was in nappies (diapers) until he was five and would happily eat frozen food from the freezer such as fish fingers or frozen chicken. (The fridge was eventually locked in the garage!) His intense focus on hoovers lasted until he was maybe 8 ish. His focus moved on ceiling fans (spinning items is a very common thing for autistic kids to focus on) and on Pylons (they carry electric across the fields – not sure what you would call them outside the UK). Update for 2018, is now growing fruit bushes, and the construction of houses in our town.
He has a high threshold for pain. From being a baby when he fell over he would just dust himself off and carry on. He never looked for sympathy or hugs.
We are lucky. Matt is verbal, although it is sometimes difficult to make sense of what he is saying. He adores Thomas, Horrid Henry and Tom & Jerry. He will often repeat entire episodes over and over and over (and then over again!). He also like bad jokes, watching the inbetweeners, and hugging me.
He is stubborn and selfish in his needs, and then sometimes he isn’t (very rarely!). He tantrums and moans and then he has peaceful times and it’s like he is ‘normal’.
Matt is in his last year of special school with small classes that caters for kids with a wide variety of disorders including those on then Autistic spectrum. He is 19 this April… and he is mostly happy.
He is very affectionate. Loves his family, and his sister’s boyfriend. Loves cats, and holidays, and ceiling fans… he has the most generous heart.
If YOU think your child is different, then the best thing you can do, for you, your family and most importantly for the child themselves, is to seek help and support. The more we understand about Matt and how his brain works, the easier things become. The more he can understand of himself the more he can self regulate.
Win/Win really.
Did you know?
- Autism doesn’t just affect children. Children with autism grow up to be adults with autism.
- Over 40% of children with autism have been bullied at school.
- Autism is a hidden disability – you can’t always tell if someone has it.
- Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.
- It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways.
- People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours.
I could write a list with a million facts… but the biggest thing of all…
If you have met a child with autism, then you have met ONE child with their kind of autism.
Because autism is different for every person.
http://rjscott.co.uk/ellery-mountain
I hope your hopes and dreams for Matt will come true. As parents, you will always have hopes and dreams for your children. But as parents (as I am) of a child with autism, you hope and dream even more. Growing up is not easy for any child, but when you are on the autism spectrum, it is so much more difficult. It is an every-day struggle. All you can do as a parent help them as good as you can with letting them be as they are.
I wish Matt all the happiness in the world.
Thank you, R.J., for doing this Autism Awareness blog hop, again.
Thank you for joining in. Hugs, RJ XXXXXX
A truly inspiring story – thank you for sharing.
My hope is, that my daughter grows up to be happy on the path she chooses.
My dream is to experience her grown up, married and as a mum…if she wants those things ❤
Hugs. You’re welcome. xxxxx
My Hope’s and dreams are that everyone is treated with respect and understanding regardless of any disability, sexual orientation, size, color, creed. Ambitious, but I hope I can see it in my lifetime.
Word. XXX
Time off work
i always love hearing your FB updates about Matt. he does seem like an amazing young man. i know my folks always wanted me to be independent as possible even with learning difficulties. so it’s always nice to see your son obtaining similar success that i have had 🙂
That is what we want for him. Hugs you xxxxx
This made me emotional a bit. I have a 9 and a 8 year oldon the spectrum and some od the things you describe about Matt at those early years are so so similar for both of my children. Believe me when I say I know how hard it is , we’ ve been through so much like bullying in school and people where we live treating them bad because of their differences. I had a Doctor give me the same words ” I can’t believe youve been dealing with this for so long without help. My children were diagnosed at 3 and 2 and even at there current ages i had a long fight to keep those diagnosis so they would get the services they needed. My hopes are that they will be able to learn the things they need to live an independent life. My dreams are that they will be able to live a happy and fulfulled life to the besr of their abilities.
Hugs you hard 🙂 XXXXXX Always here if you ever want someone to listen to you xxxx
Thank you for sharing about Matt and your family. I love how you talk about Briony. My cousin Meg has Cerebral Palsy and her biggest support is her younger brother Ryan. I love hearing about the positive relationship they have. And in general, I love your Matt stories on FB.
aww thank you… and hugs 🙂 XXXXXX
Thank you for sharing this beautiful and moving story. I hope for a better world for everybody. I know it is overused, but that’s what I wish for in future. A better world where people are treated with equality, no matter what your way of thinking, believing or loving. I hope one day society will understand that embracing the difference is the only way to move forward and become a better world
Thank you. I so agree. RJ XXX
Thank you for your post. I enjoy reading your posts on this hop each year. I hope your dreams for Matt come true. My dreams for my kids are the same as yours for Matt. I also hope that they grow up to be caring, empathetic and open minded. We all work at that each day.
I wish I had known about Asperger’s when I was in university. Looking back, there was this guy who obviously had it and instead of being puzzled and a little upset at his lack of social skills, I would have been a little more understanding and gone out of my way to include him.
Matt gives hope for our MJ, 4 years old and diagnosed with Autism just over 14 months — his parents pushed early to get support and that helped him make many significant gains. He has had many a public meltdown to which others remarked that he was “seeking attention” and required discipline — No — he was overwhelmed and needed calm. Every chance we get when interacting with the public, I try to use as a teaching moment, not for MJ but those around him. My dream is for others to understand that being different is not a bad thing.
Thank you for sharing. As parents, that’s all we ever hope for, for our children.
Thank you for your post a hope Matt continues to be happy in whatever he does and with such wonderful parents I know he’ll have a great future with your help.
Thanks for sharing an update on Matt. It is wonderful to see that he is making his way in the world in his own style.
Keep the faith and just hold onto the Serenity Prayer:))
My oldest grandson was diagnosed as being on the spectrum, according to his mother. I don’t know how much of what she says is truth or her version of the truth. What I do know is that I suspected Autism when he was only a few months old, after he started to sit up on his own. At the time, his Dr said no, he wasn’t, but that has since changed. I also suspect that his younger brother, same dad, different mothers, might also be on the spectrum, but his mother is the type that will deny it. Since I don’t have any say so in it, there isn’t much I can do. But I think I’ll have a conversation with my son about it and maybe he can convince her to have him checked.
The worst thing a parent can do is be in denial. I understand why a parent falls into denial, I think it took S a long time to come to terms with the A word… BUT… early detection can give a child so much of a better start. HUGS YOU HARD XXXX
I have a cousin with Asperger’s who’ll be Matt’s age in a couple of years, and my aunt worries about what’ll happen once he’s college-age, even though he’s doing well. So, it was good to read this! As for my dreams, true love would be nice. 🙂
Thank you for telling and updating Matt’s story. I’ve been following you for a while now but somehow have missed the blog hops so it was all new information for me. Connecting with authors like you on FB has helped me become a better person and more tolerant of people who are “different.” I grew up around physically handicapped people but didn’t really have any contact with people with other challenges.
Thank you for writing such wonderful books.
I’m extremely happy that things are working out so well for Matt and your family. I love stories with a happy ending.
My hope is that one day the US will have a system/ program where a health visitor would come assess the child in their home.
My dream is that all children are born healthy into a safe, loving family.
NOW FROM A COMPLETELY SELFISH STAND POINT…………………
My hope is to find a career that I love, that way I’d never have to go to work.
My dream is to win the largest drawing of the Mega Millions lottery. Then I could donate all my time to cause I beleive in and contribute accordingly.
Thank you for the post RJ. I enjoy reading your post every year and I feel like I’ve learned a lot over the years. My hope and dreams are pretty much the same in that I hope that our children grow up to be respectful, considerate and compassionate individuals.
I hope that by 2020, after I graduate my MA in Clinical Psych, I’d get my license as a registered Psychologist. It’s always been my dream to help people in ways I could especially children. Thank you for sharing this with us, it’s truly inspiring!
I loved hearing about your hopes and dreams for Matt. And you were lovingly transparent about your fears … I sometimes think people see moms and dads who have kids with special needs as super parents … and they are. They work super hard and they dream super big. But they are parents, period, and you have conveyed this so well.
My hope is that every foster child that comes through my home remembers they are loved, remembers the feeling of love even if they don’t remember me. And I hope someday that I’ll get to see and hug my longest placement again.