I’m a dad to 2 boys with autism, something I was never prepared for.
How could I be, I had no idea of what it was.
Like many people my age, the first time I saw anyone with autism was about twenty years ago watching Dustin Hoffman in Rain Man. Hoffman’s character, Raymond Babbit, taught me that people with autism were uncomfortable talking to others, obsessed with routine and hated flying. On the plus side, they were also geniuses; especially at counting cards. Whilst I loved the film, I stored away my impressions of autism, blissfully unaware that it would ever be a part of my life.
I went through my teenage years and twenties without ever thinking about autism again. I’d never met anyone who was autistic (at least that I knew of), or even heard anyone talk about it. Before I’d reach my thirties I’d never have another day where autism wasn’t at the very forefront of my mind
When my first son, Jude, was 9 months old, his mum shared with me her concerns about how he was developing. I shrugged them off. He was so young, (he’d been born 7 weeks premature,) so in my mind he was bound to be a bit behind other babies his age. The doctors seemed to agree with my opinion to begin with. I guess they see their fair share of paranoid parents every year, and children do develop at different rates. Three months later I was coming around to my wife’s way of thinking, and I agreed that something wasn’t quite right. Various trips to doctors and consultants followed, and by the time Jude was 18 months old he was given a diagnosis. Autism.
Such a small word.
Such a powerful word.
Such a confusing, upsetting, scary word.
Such a life changing word.
Three years later we would be going through the exact same process with our second son Tommy, also diagnosed at 18 months old. We’d known deep down that Tommy was autistic for at least 6 months previous, by then much more aware of the signs thanks to Jude. This time, I thought I was already battle hardened from our experiences, so it would be much easier to deal with. I was wrong. As much as you try and put on a brave face, you can’t help but be consumed by self-pity for a while. Why had this happened to us twice?
Thinking back to a time before I knew what autism was seems surreal. So much has happened since that I can’t really remember what life was like before. Maybe all parents say that about raising kids; exhausted by the demands and changes being a parent makes to your life. All I know is that being a dad to two boys with autism has been the greatest challenge of my life. I’ve seen and experienced things that I would never have imagined being a parent would involve. It’s been an intense, physical, emotional, and sleep deprived roller coaster, which for a ling time had way more lows than highs
Whilst all of this has been going on in my life it seems that the rest of the world is also, slowly, beginning to take notice. More and more people are being diagnosed and placed on the spectrum, at a rate that seems to show no sign of slowing down
But what has this got to do with writing a blog?
As I’m sure you can imagine raising two autistic boys with such profound needs is pretty full on. My sons require one on one attention all day long, and their challenges and behaviours can be very extreme at times. Add in some pretty crazy sleeping patterns, and some huge self-harming issues, it means life can be pretty demanding.
On top of that I also have to find the time and energy to try and run my own business. Being able to switch off from all of the pressures at home and get my mind into business mode can be difficult at times, especially on 3 hours sleep. But somehow I have to make it work. Raising 2 kids with autism doesn’t come cheap!
So probably the last thing I should be doing with all that going on is committing to writing a blog too, right? Haven’t I got enough to worry about and focus on, instead of adding something else to my daily routine?
To put it simply, no!
If nothing else it will give me something to do during those long sleepless nights that I’m sure many of you out there also get to enjoy!
I want to do this and write an autism blog for a number of reasons…..
1) To Help Me Become The Best Parent I Can Be
Raising children who are on the severe end of the autistic spectrum is really tough. It’s easy to feel lost, like there’s no-one to turn to, no-one who understands. I’ve been that parent, and some days I still do feel like that. Over the last 3 or 4 years, I’ve had times where I’ve experienced extreme lows and not known what to do or how to cope. My life was full of anger, jealousy, resentment, guilt, fear and regret. Feeling like that whilst surviving on four hours sleep a night doesn’t lead to a happy life!
I kept everything hidden inside as much as I could, not wanting to burden anyone else with my problems, least of all my wife. She was going through this as much as I was, so I thought that sharing how I felt would just add to her burden. I was the typical man, not wanting to talk about my problems, even with those who cared the most. When friends and family would ask, “how are the boys?” it was always much easier to say, “yeah they’re ok” than actually tell the truth and break down in tears in front of them. It’s not that I was ashamed to cry, I just felt like if I started I might not ever be able to stop. I also didn’t want to put that burden on them so that they end up feeling sorry for me or worrying about me.
I sunk into a real depression, my health began to suffer, and for years I felt like I was just surviving, trying to get through another day. Life wasn’t fun anymore. No matter where I was or what I was doing all I could think about was how bad our lives had turned out, and how I was failing in trying to fix our boys.
Living and feeling like that is obviously not healthy, and something had to give. For me to be able to cope with Jude and Tommy’s autism things had to change, I had to change. In order to be the best parent I could be for them, I had to accept their autism, and love them for who they are, not dwell on who they might have been. I came to realise that the more open I was and talked about the challenges we face, and the way I felt, the easier it became to deal with them. This was especially true when I talked to other people who have their own experience of autism. The power of sharing with people who understand you, people who don’t judge you or your child can be an incredible thing. When times have been tough and I’ve been close to despair, talking with others has helped me re-charge and find the strength to persevere. It’s given me the confidence and the strength to shake off the negative feelings, the self-pity, the jealousy, and the anger, and enabled me to focus on the love I have for my sons, and that I know they have for me.
Sharing my thoughts, feelings and stories in this blog will give people a glimpse into exactly what life is like for me, raising 2 boys with autism, and at the same time give me more strength to become a better parent.
2) To help others:
One thing I truly am grateful for since Jude was diagnosed is for some of the amazing people I have met along the way. This is something I didn’t take advantage of for the first couple of years, preferring to be more insular. Since I allowed myself to open up I’ve met parents, carers, and professionals from all over the world, and each of their stories has left a lasting impression. For me listening to others has been just as helpful as talking about my own experiences. It makes you realise that you’re not alone in this difficult world. Hearing about other’s problems, challenges, therapies they’ve tried, successes they’ve had, can all make a difference to our own lives. Knowing that someone else is out there going through the same difficulties that you are can be life changing
Autism is a vast, wide and colourful spectrum, which at times makes it so hard to know what choice to make, or feel like you’re ever doing the right thing. There is a minefield of information available on the internet, from organisations, and medical professionals. Yet some of the most practical, and insightful things I have learnt have come from other parents who are living with autism day in day out. Their stories have inspired me when I’ve needed it, and also given me hope for what my children can achieve.
Some of the people I met have dedicated their lives to helping others with autism, and their families. Their love, passion, and dedication have stayed with me and left me with a desire to do the same. Yes I have 2 boys of my own to focus on, but if by sharing my experiences it can make a difference to even one person who needs help, then I’d feel that writing this blog will have been truly worthwhile.
3) To Spread Awareness:
When I went to school I don’t remember there being anyone there who was autistic. Thinking back this could easily have been due to a lack of diagnosis in some cases, but for whatever reasons you believe are the cause, research clearly shows that autism is on the increase. Latest research put autism rates at 1 in every 68 people. Yet the majority of the world has very little idea of what autism is, what it means to be autistic, or what it means to the families of those with autism.
Like parents of any child with special needs, life hasn’t dealt you the cards you expected when you found out you were going to be a parent. Suddenly you have so much more to deal with physically and mentally. Being a parent becomes a much more difficult job than the one that you signed up for. What makes things even harder is that you’re surrounded by a lack of understanding by the people around you. As you’re trying to make sense of your situation you also have to try and find the strength to explain to your friends and family what autism is. It’s not that you don’t want to. You’d love everyone to truly understand what you and your child are going through. Knowing how to explain is another issue. Not only that but you also have to worry about trying to explain to the rest of the world why your child is so different. Why they have such strange habits. Why they don’t interact with the rest of the kids in the park. Why your child having a meltdown in the middle of a supermarket does not make you a bad parent, and that if your child was ‘their’ son they’d still be having a meltdown
Usually we don’t have the luxury of having the time, energy, or the patience to educate the rest of the world. Yet until more is done to highlight what autism is and increase awareness of it, how are our loved ones with autism going to be more accepted in the wider world? It’s only by being educated that things can change, and hopefully the stories I share will go a small way to helping achieve that.
All of my stories here will be 100% genuine and honest. Some of the things I say might upset some people. That’s not my intention, but it’s ok. I fully accept and love my boys, so I’ve no need to sugar coat our experiences for anyone, or waste time ensuring everything I say is politically correct. I’m not writing my stories to preach, and say what I’m doing is perfect and that you should do the same. If you follow a different path to me and you believe that is what is best then that’s great. None of us should be here to pass judgment. I simply hope to bring some more awareness to the world by telling what my experience of being an autism dad is.
4) To speak to others in the world of autism:
Whilst writing this blog I want to be able to talk with parents, professionals, people with autism, in short anyone with a story to tell. By doing so I believe it will help achieve all 3 points I’ve listed above. I have met and spoken with some amazing people over the last few years, and their stories have helped shape me into the parent I’ve become. The autism community contains such a wealth of knowledge, there is so much we can learn from others within it. Talking to others will help me develop my understanding of autism even more, and in turn improve my understanding of my sons too. If it can do that for me, then I’m sure it will offer information, hope and inspiration to others as well, and help spread awareness even further.
Whilst I’ve always been much more of a realist at heart, I’ve recently come to understand the power in dreaming big. No-one should be able to tell us what we can or can’t achieve, and that’s something I try to remind myself every day when I’m with my children. Their stories are what will inspire this blog, and I hope one day we can look back on this together and see just how far they have come. I know that by writing these stories I’m going to be able to connect with so many people and learn so much more about autism. Hopefully you will too!
I just wanted to say THANK YOU!!
It was so nice to read something that I could actually relate too fully.
My daughter Evie is in Jude’s class at school but my little boy Josh who is 2yrs has recently just been diagnosed.
It’s like I was reading something that someone had written about me.
I’m actually going to send this link to friends, family & even my husband to read.
Sam.
Author
Hi Sam. Wow, THANK YOU for your comment, it really means so much, and great to hear it’s reaching the right audience already.
I hope you’re having a good summer with Evie and Josh, hopefully see you at school sometime
I read this piece and just thought wow. It’s insightful to many of us who don’t know about autism first hand but just guess, as you say, Rain man was the only film that has portrayed it in the public, ands also to to say well done for even finding a nano second in your very busy 24hours to enlighten us from a very real perspective on what your life is like on a day to day basis. You’re amazing just by writing this and an amazing parent, I salute you. I will definitely be sharing this on Facebook for what it’s worth and lets get you heard so we can spread awareness and put you in contact with other people who are going through the same thing so that you never feel alone. You’re an inspiration and Thankyou for sharing such personal thoughts xx
Author
Hi Lucy, thank you, and thank you for sharing. It is hard to find the time, but luckily/unluckily I get a lot of time in the middle of the night for my thoughts 🙂
xx
Fantastic James. What a moving piece. May you find the support and the courage the peace and happiness xx
Author
Thanks Sue, I hope so too xx
Hi, my son Max is also in your son Jude’s class, I sometimes see daddy and Jude at drop off @ school in the mornings…what a fab read, looking forward to future posts x
Author
Thanks Laura, will have to make sure we say hello next time I see you at school. Hope you’re all having a great summer x
Reading your blog made me want to cry, but that is of no help at all,and it just conveys to you my utmost sympathy for you all. James you are a very special person and that is why you have been struck with this situation. You can carry this burden and make a wonderful father for your two beautiful boys! If we can be around for you and welcome you into our fortunate lives then please knock on our door. It will be open and welcome you. I can only offer you a shoulder to lean on and a friendly word when you need it.
Author
HI Liz, thank you for your kind words, and offer of support. It’s good to know that people are there for us xx
Hi James, Firstly i would like to say what a pair of handsome boys you both have, totally gorgeous. I’m Cassie’s Mum so therefore Deans Mar in law, it was Dean and Cassie who said i should read your blogs. I think what your doing is wonderful and it really does spread awareness about Autism. I will definitely be sharing your blog.
Much love to you all, Christine.
Author
Hi Christine, thank you so much for your kind words, it really means a lot. Dean mentioned he’d been talking to you about it, so glad you’ve been reading 🙂
Hi James
Hats off to you for your proactive attitude and belief. You are clearly doing such good, despite the challenges and complications of the life you lead. Leading by example is possibly the best way of teaching and showing a positive way forward isn’t it?
Sometimes, when its so tough, sometimes day after day, knowing you’re actively doing so much good for your boys and others, gives you that strength and belief to keep on with the journey.
We have no entitlement to anything, including an easy life! I believe challenges are there as opportunities for us to stand up, learn and keep on growing. Sometimes, the answer or solution isn’t in sight when you first start looking, is it!
Keep up the good work, dad 🙂
Hi there. As a Mom of child with ASD, I do a lot of research and read some sort of resources I think very helpful for me. Just like to share some of these resources I found from Autism Parenting Magazine. I am very happy to share this with you http://www.autismparentingmagazine.com/autism-resources-parents/
Author
Hi Fiona.
Thanks for sharing this, I’ll check it out 🙂
i have aspergers and m.e
i do a blog http;//mark-kent.webs.com
Hi James – thank you. I’ve just stumbled across your blog and am so grateful to have gone right to the very beginning and read this searingly honest portrayal of life at the ‘beginning’. I too am going to share it with family and friends, so they have the opportunity to read your words. How you find the time I don’t know. xx
Dear Stories About Autism blog
I am Stanley. I like to share an inspirational story regarding an Autistic individual that despite his mental disability and limitations, he has done many things that people would be skeptical of when thinking about this man.
His name is Brian D. Hill, and he was a political hobby blogger because he suffers from Type 1 Brittle Diabetes which conflicts with his Autism and Obsessive Compulsive Disorder. Because of his own personal suffering, he got involved in trying to find out the truth, and from his own unique view he has blogged about what he thought was the truth. That blog was USWGO Alternative News. He does have Autism and I know he does because of the released Autism TEACCH papers that were published on a online file storage cloud service link that was posted on We Are Change’s article about Brian. He was a former Righthaven lawsuit victim and had been featured in a New York Times Article.
http://www.nytimes.com/2011/05/03/business/media/03righthaven.html
He has Autism, he has been harassed by a Police Department in North Carolina. They have made an enemy out of him because he apparently angered a State politician in the North Carolina General Assembly. One of his direct family members just happened to be the District Attorney of that same county at the time. That DA’s assistant was connected to the very police detective that claimed to be putting Brian under a criminal investigation. The police were informed that Brian had Autism, which was documented in a police report, yet the Police Detectives and/or it’s Chief gave Brian the impression that if he didn’t falsely confess to the crime, that his mother would be imprisoned in his place, that she would be held responsible. Brian told them various things that are forensically proven to not be truthful statements regarding his guilty confession. He told the Detectives different things, and the Detectives were egging him on to agree to theoretical argument allegations that they were making up about looking at certain people at Walmart (when Brian has never done such a thing) and got him to agree to what the Detectives were talking about to make Brian look more dirty, perverted, and guilty. They were bullying him and refused to let him make an honest statement.
He was even confused as to what the police were accusing him of. That is because they didn’t understand Autism, they didn’t want to interrogate him or interview him in a way that he would not give a false confession. They did not want to take his statements to heart, but more of they were angry about things Brian was posting on his blog and YouTube channel, so they wanted him to just admit guilt even if such statements are proven false upon cross examination.
The Judge in the Greensboro, NC Federal Courthouse upheld and allowed the evidence including his false confession, even saying on Transcript “What does Autism have to do with his guilt or innocence?” Well Brian gave a false confession, is one factual basis that makes Autism a need to be apart of Brian’s criminal defense. However multiple lawyers in his case claim that Brian cannot use Autism at all in any of his criminal defense unless he was mentally insane. So Brian has to play crazy to some psychiatrist just to be found not guilty for his false confession and being framed by bullies within the police department? Brian decided to go a different route. He decided to fight back by writing a book about it and going to the media.
https://www.amazon.com/dp/1541362497/
http://www.barnesandnoble.com/w/the-frame-up-of-journalist-brian-d-hill-brian-d-hill/1125415539?ean=9781541362499
Description of his book: Brian D. Hill, a Former Alternative Media Journalist who tried to fight the political corruption all by himself, armed with knowledge but limited with Autism Spectrum Disorder. He founded and operated USWGO Alternative News at uswgo.com, then was transformed into a wrongfully convicted felon who continues to fight for acquittal. Trying to prove actual innocence, due process deprivation, health deprivation while incarcerated, and was forced into a false guilty plea agreement, but he is still willing to risk life and limb to prove innocence. Will Brian be acquitted in the corrupt Federal judicial system, which has a 93% successful criminal conviction rate? He is the victim of political and judicial corruption, denied justice by court appointed lawyers. What has happened to Brian D. Hill has happened to Ryan Ferguson, Kalvin Michael Smith, Amanda Knox, Rubin Carter (The Hurricane) and other wrongfully convicted people. It can happen to you. All proceeds will go towards his legal fund.
In addition to that, the Autistic man Brian has decided to go to the media and alternative media if the corporate media refuses to cover his story. Here it is:
http://wearechange.org/case-brian-d-hill/
https://archive.org/details/USAvHill
I was so moved by how hard he has been fighting to prove his Innocence, to show cause that his confession was false because of his Autism and the police Detectives disregarding his Autism when questioning him, and by trying to prove that he was set up because he unreasonably angered a politician that triggered a retaliation or attempt to shoot the messenger for taking things too far against the politician.
The politician and his family don’t understand Brian’s Autism nor do they care that a potentially innocent autistic man was wrongfully convicted in our Federal Courts.
It is so bad, I have decided to create a online Petition at WhiteHouse.gov, asking U.S. President Donald Trump to consider granting him a full pardon of innocence and blot out his guilt from his case.
https://petitions.whitehouse.gov/petition/fully-pardon-journalist-brian-d-hill-frame-victim-case-113-cr-435-1-expunge-conviction-ex-parte-garland
Even if the Federal Rules of Evidence permit Brian’s false confession, and not make it admissible for Brian to bring up his Autism as one of several good reasons as to why he gave a false confession to law enforcement, it doesn’t change the evidential fact that Brian gave a false confession, that he has Autism and OCD, that he suffers from a neurological impairment, and that such impairment can produce undesirable statements for a criminal investigator to find evidence of the truth in regards to a possible commission of a crime, especially a crime over the internet with computer hackers these days.
Brian’s story does prove that he did give a false confession, and other evidence puts the facts of his guilt into serious doubt. Should Brian have been convicted when he keeps saying over and over under Affidavit that he is innocent, and the evidence and facts is put into question?
What has happened to Brian, can happen to anybody. A bully that manages to become a high positioned law enforcement officer, can arrest and imprison somebody with Autism and the court appointed lawyers are worse then the corrupt rogue cops. The lawyers sit there all day long and coerce you to falsely take a guilty plea agreement and suffer a prison sentence. The lawyers don’t want to bring up Autism at the Jury Trial, usually. Brian’s story is a reminder to us all, that Justice can be denied to a innocent person who just happens to have Autism or OCD, or just anybody for that matter that is weaker in body strength but has a good heart.
You should pass this story on to everybody you know that has Autism. Please blog about it, please interview Brian. Let him promote his book by posting about this issue on Autism Blogs Directory and show other Autistic people. that are facing similar criminal allegations that may be innocent, that they are not alone in this scary world.
Please help him get Justice that he was denied years ago.
His mother had even written a book called “Jailed with Autism”.
https://www.amazon.com/dp/1542650747/
You should seriously consider writing me back, respond to me and even ask for his phone number. Talk to him, interview him, give him a chance to tell his story to many other people with Autism Spectrum Disorder. His story needs to be heard. I’m not sending you this email for money, I am sending you this email and taking the time, so that other people can help him get Justice, and so that people with Autism in the future won’t have their lives flushed down the toilet. False confessions ain’t right, wrongs don’t make a right, no matter if the police had good intentions or not.
Best Regards,
Stanley Bolten
Hi James!
My name is Jennifer Norman, author of The Adventures of SuperCaptainBraveMan children’s books. I wanted to let you know I’m about to launch my 2nd SuperCaptainBraveMan book, ‘A Spectrum of Love.’ It’s a picture book about a young disabled boy who dreams of turning into a superhero. He helps a boy with autism discover his own unique way to express love to his family.
I wrote this book to help educate all kids about autism and pay tribute to the wondrous gifts possessed by kids living on the spectrum. I’d love to send you a copy to read, share & promote as you see fit. If you’re interested, please send me the best contact name, address and email for shipping.
Thank you for your consideration!
Jennifer
From Sunny Los Angeles, California USA
The more I read the more I look forward to what you write next. So many similarities in our journey. I know so very well those feelings you accurately describe. Tina
The more I read, the more I look forward to another story. It was great to read about how you started and there are so many similarities in our journeys and the feelings experienced.
Looks like I’m a little late to the party finding your blog….but I’m glad I did! I’m a single mom to a very funny, outgoing, six year old son with ASD, ADHD and Anxiety…we live in Seattle, Washington. I do believe I need to find a creative outlet like this for my sleepless nights as well!
Thanks for sharing your life stories 🙂
Thank you for sharing the information about autism spectrum disorder. Children are spending most of time with their parents so parents are aware with their children’s behavior.
So thankful I found your site! Thank you for taking the time to write about your journey. I love reading your posts and look forward to each one.
Hi James and boys! Reading on your website: what an amazing view into the world of a positve father and his 2 special sons! My exposure to autism is via a friend’s son now aged 14. Recognising the complexities in rearing such a special child and the stress it puts on parents, my question is: is there a spiritual element in handling the stress and finding personal growth and even joy at every inchstone? I read many parents after diagnosis ask the “why” question and even express anger at God but wonder if God features as the years go by?
This was such an amazing article
Hi, I have autistic 4 year old and I recently came across your podcast. I want to say that it has really been a great experience listening to you and your guests and I really like the way you ask your questions and how good your questions are because I have the same questions.
Continue the good work
Author
Thank you, so glad that you’re enjoying them, lot’s more episodes coming up
Hi James
With tears rolling I want to say thank you for giving hope.
My son also autistic and non-verbal, something I was never prepared for.
My biggest wish and dream would be the words: “Daddy, I love you”
We’re based in Cape Town, South Africa.
Author
Hi Johan
I’m sorry, I’ve only just found your comment. You’re very welcome, I’m so glad you feel our stories give you hope, always hold onto that.
I hope you and your son are both doing well