Much of this stuff isn’t easy to talk about because it’s not something I’m personally proud of. That being said, I’ve committed to being more open and honest about the things that impact my Autism family.
The reality that I live in on a daily basis is not easy. There are unique challenges in my life that can make people uncomfortable to hear about but they are my truth.
Long before I became a single Dad, I was a Firefighter/Paramedic. I made good money and had great benefits, including retirement. As Autism entered into my life, it slowly took away control and in some ways, we were at the mercy of very serious behavioral problems.
As life became more challenging, very difficult decisions had to be made. Some of those decisions would lead to career changes that eventually saw me taking on the role of stay at home Dad.
There wasn’t much of a choice because my wife was dealing with numerous health issues, both physical and emotional. Some of these were more serious than other but they all made life very difficult for her and severely impacted her ability to function as a caregiver to our three children.
It was a less than ideal situation but I did my best to make it work.
When my blog Lost and Tired (now retired) took off, I was able to generate some revenue from things like ads and sponsored posts. It was a good supplement to the repairing and building computers I was doing out of my home office.
Fast forward a few years and a total of three Autism diagnoses later.
Life had become very, very difficult. My oldest had started to develop extremely rare and life threatening health issues that saw him hospitalized many times. This along with his serious mental health issues and dangerous behaviors made it impossible for him to be left alone with any one person.
Along the way we would experience more and more financial hardships, utility shutoffs and at times, difficulty keeping food in our cupboards. I’m not proud of those thing but everything that could feasibly done was being done. We tapped into every possible resource we could find but seemed to fall into this grey area, where we didn’t qualify for most of the programs.
As Autism and health issues continued to take control over our lives, my 11 year marriage ended very unexpectedly. The most painful moment of my life was on October 14th, 2014. That was the night my wife left and I became a single Dad overnight.
Since then, I’ve been raising our 3 enormously challenging kids on my own. The only physical help I have is my parents. The boys see their Mother for about 24 hours every other Friday for a supervised sleepover. They have dinner with her every other Wednesday night. That’s pretty much the extent of her involvement over the last year and a half or so.
This isn’t meant to bash her in any way. In fact, I still love and miss her very much but this is the reality that I’m forced to deal with every single day of my life. It’s a very complicated situation that involves serious emotional health issues and that’s all I really publicly divulge because while I’ve promised not to share what happened, I don’t want my kids finding out about some of the choices she’s made. They don’t need to know the grownup stuff. That’s all I have to say about that.
Unexpectedly becoming a single Dad to three boys with Autism and serious health issues, was not anything I had even remotely planned for. Coping with my own grief and confusion, had to take back burner because I had three special needs kids who’s entire world had just been shattered.
My kids don’t cope well when the pizza delivery is a few minutes late. Waking up and learning that their Mom had moved away, has been beyond difficult for them.
On the positive side, since being on our own, my oldest has transformed from someone who couldn’t safely coexist with the rest of us to someone I couldn’t imagine being without. He’s had a complete behavioral turnaround and has in many ways become my righthand man and partner in crime. ☺
He’s not without his significant challenges but behaviorally he’s doing absolutely amazing. I’m his 24/7 caregiver, so we’re literally always together.
When my wife left, there were many complications with the assistance we were receiving to the extent that we lost all our food assistance for about 4 months. The reasons aren’t relevant but it was something I had zero control over.
I was able to eventually apply on my own and I was able to regain our food assistance, as well as our insurance. This means that other people’s decisions can no longer impact this aspect of our lives.
I’ve also been able to get my youngest on disability, which has been a huge help. My oldest has been on disability for the better part of a decade.
The extra income has really helped until the other shoe dropped. As a result of gaining the additional SSI we basically lost about 75% of our food budget and April is the first month that this change has kicked in.
Essentially, we’re no better off now than before because any advantage that came with the additional SSI income was basically wiped out by the loss of our food assistance, which honestly wasn’t enough to begin with (but I will forever be grateful for)..
Do you know how expensive it is to feed three growing boys with massive sensory related food proclivities and or food allergies? I’ll give you a hint. It’s really expensive and to be quite honest, it’s a challenge I haven’t quite figured out a solution to but I need to in very short order.
As a single Dad, I’m tasked with making sure my kids are cared for, which includes but isn’t limited to the following:
– Bathing sensory sensitive kids, which entails screaming and Meltdowns.
– Cooking for sensory sensitive kids which means cooking multiple meals for all three meals and having to remake things several times in order to meet their sensory needs.
– Dealing with daily meltdowns over just about anything you can imagine.
– Helping my sensory sensitive kids get dressed for school (which is often and absolute nightmare) and getting them to school.
– Picking them up from school, no later than 3pm or they worry that I’ve forgotten them.
– I also have to be ready to pick my youngest up from school at anytime because of his rare fever disorder.
– Making sure the kids get to speech, occupational, physical and family therapies, as well as all the out of town doctors appointmenta they require.
– Managing the roughly 30 medications between the tree of them and yes, they are necessary for their quality of life. In Gavin’s case, they’re necessary for him to live.
– I perform IVIG infusions twice a week on my oldest because he lost his immune system a few years ago.
– Everyday, I spend large amounts of time, energy, patience and sanity, helping my kids get through this divorce, as well as shielding them from as much as humanly possible.
– On a good day I’m lucky to get four hours of sleep because some of my kids struggle with sleep.
– I struggle through homework with some of my kids daily and it’s oftentimes a battle of epic proportions.
– Since my oldest had to be pulled from school for physical and emotional health reasons, I work daily to teach him the life skills he needs in order to have an level of independence.
– I have to be able to function in a constant state of sleep deprivation.
– Did I mention the daily meltdowns…..
– Somewhere along the way I have to find time to generate an income without leaving the house alone.
– I have to do all of this and more while battling with depression
This list could go on but you get the point. My plate is full and I’m absolutely overwhelmed. The future is a scary thought because I have no idea what in store for the boys and I.
While I work very hard with whatever I have leftover to devote towards improving our lives, I wouldn’t change or trade my mine for anything in the world. My kids are amazing and worth every single hair that I’ve lost along the way.
The truth is, I have no idea what the future holds or how I’m going to make everything work. I sorta figure that out as I go.
Reading this you might not think so but I have so much to be grateful for. I have my kids and there isn’t a custody battle. While it’s not perfect, my boys still get to spend time with their Mom.
Aside from depression, needing to lose weight and balancing out my cholesterol, I have my health. I have this site to provide me with an outlet as well as a platform with which to help make the world a better place for my kids. I get to work from my computer and help people from all over the world. These are all things to be grateful for.
As for all the challenges I’m facing, I’ll figure everything out, I always do.
I know that some of you are able to relate to my struggle and I’d like to remind you that I’m always here if you need to talk or think I can help. To those who can’t relate or would cast judgement, I ask that you please keep any negative comments to yourself because it’s not easy to talk about things like this and I’m trying to inspire others to share their story as well.
Finally, I’d like to ask that you take a minute and check out some of the ways you can help keep this site, as well as my efforts to help the Autism community, alive and moving forward.
This site must earn it’s own way by generating at least enough revenue to cover the server expenses every month. Please click here and find out how you can help. It doesn’t have to cost you anything more than a minute or two of your time but the impact you can have on my continued efforts is quite profound.
I hope you found this post insightful, whether you agree with it or not. Autism has such a profound impact on our families and the more we talk about things like this, the less stigma will be attached…..