I published my first blog post about 15 months ago now, and since that day things have changed quite considerably for me and my family.
I share a lot of personal stuff on my blog, the highs and the lows of being a father to 2 boys with autism. Yet, there’s been something I haven’t felt ready to talk about until now.
The last few years have been difficult times for our family, even more so than before. Alongside the daily challenges of autism, my marriage also began to have problems. After much hard work by both of us to try and keep it together, we finally separated a year ago.
Whilst a few close friends and family knew what was going on, we kept it very quiet. We tried to get through Christmas time as best we could as a family. For an outsider, nobody would have suspected anything had changed.
Once Christmas was over and the new year followed we had some pretty seismic events to deal with.
Usually when couples separate one of you moves out, but it couldn’t be that straightforward for us. Both Jude and Tommy need one on one care, so we had to find a way to make it work. Initially, I split my time between the family home and staying at my parent’s house with Tommy.
Our home was then put up for sale. Once this went through we both had to find new places to live. This finally all happened in June/July, so we had 6 months of living like this.
I’d like to think it didn’t have much of an effect on the boys, that they were oblivious to what was going on. With their communication so limited, I can’t be sure.
What I do know, is that Tommy and Jude have always been the first thing we think about, and nothing has changed. Every decision we made during that time we have tried to put personal emotions and feelings aside, and do what is best to make sure they are happy.
So, these days I’m a single parent and we are, what I’ve discovered people like to call, co-parenting. Which is kind of what we were already doing anyway.
Because Jude has had such a hard time being in the same room as his brother, we’ve been co-parenting for the last 4 years. One of us would be with Jude, and one of us would be with Tommy. We would usually take one of them out of the house whilst the other would stay at home, meaning we were usually apart.
If we were all at home at the same time, you’d find one of us upstairs with Jude, one of us downstairs with Tommy, or vice-versa.
When it came to the night time we rarely spent any time together either. Jude would be up very late every night, so typically one of us would be with him. The other got to have some free time, go to work, or occasionally see friends.
Jude would often be up throughout the night. This meant one of us would be on shift with Jude, whilst the other would get up at 6:30 when Tommy woke up.
So, in effect, we were already co-parenting before we separated. We very rarely did anything as a 4 and were lucky to grab an hour or two a week where we were all together.
Now that we are separated, life hasn’t changed much in that sense. We have made sure that our relationship is very amicable, and that Jude and Tommy come first. I am extremely grateful for that. It’s our responsibility to make sure that continues, and that we remain friends for our children’s and for our own sakes.
When you have two children who are pre-verbal it is essential that us parents are able to communicate together, without any underlying feelings involved. I can’t just say to Jude or Tommy “How was your day? What did you do with mummy earlier? Did you have fun?”
I want to know what they’ve been up to, I want to know how they’ve’ been feeling.
Have they had a good or a bad day?
The only way I can know that is if I can communicate well with their mum. So, we message each other numerous times throughout the day, just to keep each other updated on what’s going on. With Jude not liking either of us talking on the phone, this is pretty much how we used to communicate anyway.
The only real difference to our life as parents before is that we, and the boys, now have two homes. Two homes that are a street apart. This might seem strange to some people. When your marriage breaks down there’s probably not too many people who live a street apart! But, that’s what was available at the time, and it actually makes things much easier logistically.
We’re never going to be able to be one of those couples who are able to share their children 50-50. One parent would have both children 50% of the time, and the other parent the remaining 50% of the time. Jude and Tommy’s challenges right now mean that is not an option.
So, right now, I have one of the boys every night when I get home from work, and we have one each throughout the weekend, trying to split our time evenly with both.
And, it seems to be working.
There’s obviously been a lot of stress this year for both of us, just like there is for any married couple when they separate. Throw in 2 new homes, and 2 kids with autism, then yes, it’s not been the best of years. It’s been tough, very tough.
But overall, I think we’ve done the best we can. I am so proud of how Jude and Tommy have adapted to our new set up and homes.
Why am I telling you all of this?
Well, this blog is about my life as a dad to two boys with autism, and in it, I tell stories from my point of view. These events have been a big part of that, which I’ve not felt comfortable enough to talk about it until now.
Initially, I didn’t know whether our separation was final. I wanted to wait until the dust had settled. There was still a lot of raw emotions for both of us. As it became clear it was final, there were still many people close to us who didn’t actually know.
As many of you can probably appreciate, when you have two kids with autism you often lose touch with friends and family. You don’t get to see or talk to them as often as you used to. Your opportunities to tell people the news becomes more limited.
What is common protocol when a married couple separates?
Work your way through your phone book and make sure everyone knows? Sit back and wait for the gossip to get around?
For me, the way to survive this time was just to bury my head and get on with life. I’ve probably lost contact with even more people over the last year as my life became just work and the boys. I didn’t even want to talk about it with the close friends I have seen, let alone lots of different people.
I also didn’t want to write about it and have people who know us find out that way. (although I’m sure there’s probably people even now who will find out that way. If you have I’m sorry)
When I did finally try to get round to writing this I didn’t really know how. It’s taken me a few months to even type these words out, I’ve hit the delete button so many times.
Yet, I feel it’s important that I do talk about this.
People read my blog and they make assumptions.
I regularly get told what a great mum I am, although luckily not when there’s a picture of me in the post! I receive comments every day about what a great family we are and what a great job mum and dad are doing, which I am so grateful for.
And those comments still apply. We are doing the best job we can.
We love Jude and Tommy with every ounce of our heart, we were just unable to make our marriage work. We’re trying to make sure that just because we can’t be together it doesn’t impact on our son’s lives. As I said earlier, at the moment it’s actually making things easier for them.
If you read back through everything I’ve written on my blog I’ve never really talked much about my wife. That’s because I’m describing what I’m thinking, my experiences, and my interpretation of Jude and Tommy’s lives.
We are a team, and I hope we always will be when it comes to Jude and Tommy. I use the term ‘we’ when describing decisions because they have always been joint decisions. Despite no longer being together, when it comes to anything important with Jude and Tommy it is always something we have to agree on.
Though I don’t talk about her, she has always supported me and encouraged me to write and share our stories. She reads every blog post before it goes live, including this one. I want to know she is comfortable with what I am sharing about our sons. Her opinion and privacy is very important to me.
The last few years have been a real test for our whole family, which we are all hopefully coming out the other side of now. We are adjusting, and adapting to our new circumstances, and some days are easier than others.
Luckily Jude and Tommy seem to be in a good spell at the moment, and that is the most important thing in the world for both of us.
As the child of parents who weren’t together, and a mum who patented a daughter with autism alone for the first five years, it sounds like you are both doing a remarkable job. It isn’t easy but it does get easier. Wishing you all a life of happiness.
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Thank you ❤️
This is such a brave and honest post to write and to be honest it just fits in well with the rest of your blog. I can see only too clearly how things get to this point; there is so much stress involved in managing everyday life with autism and you have that doubly. Even with only one child, the stress is damaging to any other relationship. It’d be interesting to know whether your relationship would have survived without the added difficulties, but of course you’ll never know and so there’s not much point in looking back. As you say, you have done the best you can for the boys, they are your number one priority and I applaud you both for making it work and putting them first when I’m sure you’d have liked time for yourselves. You are amazing parents, even if you’re too modest to say so yourselves x
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Thank you Steph. All we can keep doing is doing our best for them, and that’s all that matters x
I agree with Steph, you are a great parent and so is your children’s mum – your partner which she still is. I am so happy and encouraged that you and her both chose to do the best for the children and make it work no matter what…thanks for sharing… really…
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Thank you Annie. Yes, it’s all about making it work for our boys 🙂
Nice post, James – and good to read a post that’s worth reading to the end. Ultimately, you need to ‘give a bit of yourself away’ to really connect with the readers and you’ve done more than that. You might find this one interesting: it’s a post I wrote for a client, who has an autistic son, although he’s 26 now.http://www.castle-employment.co.uk/2804-2/
And nice blog layout – really like the highlighted bits. All the best
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Thanks Mark for your comment, I appreciate it. And thank you for sharing your post. Employment opportunities is definitely an area that needs to be addressed as there are so many autistic adults who struggle to find a job. We’re a long way away from those challenges right now, but hopefully things have improved by the time we get there.
It is rough and difficult, my partner and I have a teenage son with severe autism who is technically nonverbal and we have to coparent. You guys have done an amazing job and this blog is wonderful not many people are brave enough to say what it’s really like with an autistic child especially a severely autistic one. Keep up the great work
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Thank you Sabrina, I really appreciate your comment 🙂
I have been following your instagram for a few months now, and that started from a search of the hashtags you regularly post under your pictures. My son just hit 2 and a half years old and we have been on the autism journey for about 8 months now. I have to admit I was in denial for a couple of those first months, just saying that we hadn’t heard back from the doctors to friends and family who would ask if we had received the diagnosis. This was a complete lie since we heard back that same week of his evaluation appointment. I just kept hoping the doctor would call back and say they had his chart mixed up with another child’s and they had given us the wrong diagnosis, but deep down I knew. After a very long hard day filled with meltdowns I finally took to the internet months after our initial diagnosis and accepted that my little guy was autistic. I read articles all night long yet still couldn’t seem to feel less lost and lonely. So, I took to instagram and found you! Your boy Jude reminds me so much of my little guy and I love his little ear defenders and earlier pictures of him covering his ears just like my Brayden! I instantly went to read your blog and honestly it was the first time I felt a little less lonely in such a long time. I just wanted to let you know that you’ve helped me a lot through your blog. My husband and I are feeling the strain on our marriage due to the extreme stresses that having an autistic child can bring and I just want to thank you for being honest and open about your situation. I look forward to reading your next post.
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Hi Lian. Thank you so much for sharing this with me, I can really empathise with everything you’ve said. Those first few months are very hard for a parent, and you handle it in the best way that you can. If that means tears, anger, denial, depression, or all of the above then so be it. Sometimes we have to go through that to appreciate what we already have in our children, and to be able to be the best parent for them.
I’m glad you’ve found some comfort in the stories I share, it’s always so nice to hear. I hope you and your husband are able to work through the strain, and just keep doing the best you can for Brayden. Thank you for following 🙂
Thank you for sharing your experiences, including this very difficult and personal one. My son is six and has autism, although he is verbal. I also have a daughter who is three and was born shortly before he was diagnosed. Co-parenting became the norm in our house as well.
Your accounts of the early days of your son’s self-harming and meltdowns broke my heart, as did this this post. You and your wife are now among my personal heroes.
Love & light to you all from Canada.
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Thank you Danielle, I really appreciate your comment. When we co-parent we’re all just trying to do what’s best for our children, even if it’s not what we expected. Thank you for following our stories 🙂
Brilliant blog per usual, very encouraging to read how you genuinely put your children first, so many could learn from your example.
Keep doing what you’re doing as a family and writing it is very supportative to many
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Thank you Stephanie, I definitely will, and I really appreciate it 🙂
I’m not usually one to comment, but I’ve been following along your journey through Facebook for a few months now. I have been going through the process of receiving an autism diagnosis with my 6 year old son since March. Welcomed a new baby girl into the world in April. So the last year has been a struggle emotionally for me. Going through everything with the Psychologist (with a 2 week old in tow) only to have to turn around and start all over with the school. I live in a very small town with very closed minded people. There aren’t very many resources available here, and it is exhausting trying to get anything done, especially with the school system. Anyways- my point is that I have no idea what to do. I don’t know anyone with autism and I certainly don’t know what I should be doing to make sure my son gets the help he needs. So what does one do when they don’t know what to do? Go to the internet 🙂 Over the months of following your posts along with a few others, I have learned so much, including that the sky is in fact NOT falling. So thank you for that. This post just proves how honest and open you are with your lives and struggles, which is the whole point- is it not? If not being 100% real then you’re cheating yourself by the amount of time you put into your posts. So thank you for your openness. It helps me feel like I’m not alone, my struggles and feelings are legitimate. You are doing a fantastic job with your boys. I truly enjoy and look forward to your posts.
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Hi Amy. Thank you so much for following our stories, I’m sorry you’ve got a lack of support right now and finding things difficult. You’re right, most people in our situation have no idea what to do, and we’re lucky we can learn so much online. I’m so gald you’ve realised the sky is not falling in, it makes such a difference to finding the strength we need every day, and to being happy. It certainly has for me. Feel free to message me if there’s ever anything you want to ask. Good luck with getting all that you and your son needs, and thank you so much for your kind words ❤️
First of all, I’d like to say that I can’t imagine what it must be like to raise two kids with autism. I’m the mother of a 13-year-old boy with autism and my husband and I have been through some pretty rough times. There was a point when we seriously considered getting divorced and lived separately for a year because we couldn’t be in the same room without fighting with each other. We didn’t know then that the year of separation would end up bringing us together again, to be closer and stronger than ever before 🙂
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Thank you Preeti. I’m so glad to hear that things worked out for you both and you were able to make it work!
Thank you for reading 🙂
James my heart & prayers go out to you and your ex. I’m sure you more than anyone is aware of the statistics of families in your situation. My daughter and son-in-law have 5 children. Three boys with autism and twin daughters. Your life will never be considered easy compared to most but your boys are blessed to have such caring and loving parents. My 3 grandsons with autism are now 22, 20 & 18. God knew what he was doing when he picked you for those boys. I’m amazed that my daughter & son-in-law are still together & still in love. I too know the odds against that. God bless you and Merry Christmas.
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Thank you Nita. Sounds like your daughter and son-in-law have done a great job! I hope you all have had a lovely Christmas too.
Really glad I’ve found your blog and I look forward to reading lots more about you and your family.
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Thanks Al, I really appreciate it
Very moving piece James. I have twin boys with autism with my first Wife and one boy with autism (and, thankfully, a healthy girl) with my Wife now. It was so difficult getting along with my ex Wife, especially with the strain of how challenging our boys were. It’s so important to keep talking and try and understand each other.
I was really touched reading your words, as I’ve totally been there myself. It must have taken a lot of courage to put it out there. Good luck and best wishes on your journey. You sound like you are doing a tremendous job in difficult circumstances.
As a child of divorce I can tell you that the greatest blessing my parents gave me was remaining friends. I am sure it was not easy but they talked about us kids weekly until I was in my 30s, and I was the youngest. You are doing something, that your boys will thank you for one day.
Hey James.
Thank you for writing this blog. I can’t wait to read the rest, You’ve just made me feel much better knowing someone else has gone through the same experiences as me.
Relationship wise I’m going through the separate rooms, fighting but trying to make sure my girl has us both there for her.
We are currently still on the waiting list for the full diagnosis so just a waiting game really. Dealing with school (who wants her to be diagnosed yesterday but can’t be done), all the “family” members (who can’t seem to understand why she can’t attend this party but she went to this one! Why doesn’t she play with the other kids, why don’t you just leave her with us? Why won’t she eat this? Why can’t you go out for a meal with her) all the meetings I attend with doctors/special and language etc it’s a lot of pressure.
Thank you again your amazing parent keep up the blog ?