One of the things I wished I had learned eariler on was how to manage a budget as a special needs family. Maybe that comes easy for some but it didn’t for me. It’s something that I’ve historically struggled with on my special needs parenting journey, but not because I wasn’t disciplined or didn’t see the value in maintaining a budget. It was more a complication of the additional challenges associated with being a special needs family, limited resources, and my inability to adapt.
I don’t think most people recognize just how challenging being a special needs parent can be. Every family is different because every child’s needs are unique but there are many common threads.
Things like insane levels of stress, chronic sleep deprivation, and difficult time maintaining balance, are all things common for many special needs families. What I want to focus on today however, is a little bit of the financial side of things.
One of the major challenges has historically been managing all the unexpected, or out of pocket expenses, of which there are many. Often times, parents have to make very difficult choices between financial stability and meeting their child’s needs. I know that sounds weird but it’s actually very common.
Until relatively recently, autism wasn’t covered by most forms of private insurance. In fact, if your child had an autism diagnosis, insurance often found ways to deny coverage for lots of things by saying it was related to the autism diagnosis. That meant parents had excessive amounts of out of pocket expenses. Parents are often forced to choose between paying the bills or paying for the services that their child desperately needs. I’ve talked to parents who have had to choose between grocery shopping or paying for speech therapy to help their child learn to communicate. It’s an awful position to be in. Don’t even get me started on trying to navigate SSI and income because that’s a whole other post that I will get to at some point.
I used to maintain a budget incredibly well because I was very disciplined. I paid all my bills on time, had money allocated for different things each month, and even put money away for the future. If I didn’t have enough for something I wanted, I would simply continue saving until I did.
When autism entered my life, I tried to force what I already knew into something that was very new to me. It was a square peg in a round hole kinda thing. I found myself incredibly frustrated and overwhelmed because everything I tried didn’t work. It took me entirely too much time to figure out that budgeting was still possible but only if I was able to adapt better than I was currently.
What I failed to realize was that I needed to take a step back and seriously look at the bigger picture. Nothing was going to be perfect and I really needed to let that go. I had to reprioritize and focus on what really mattered. I had to accept that my circumstances meant that I would need to make difficult choices and sacrifices. I also needed to accept that there would be consequences for those choices.
Like many other families in my position, I would have to make very difficult decisions in regards to how I managed our financial life. It might be easy to judge from the outside looking in but until you have to choose between things like paying your credit cards on time or paying for things like speech, occupational, and/or physical thereapies, that are vital to an autistic child’s development, you don’t know how hard these decisions can be.
I very often felt like I was in an impossible position and no matter what I did, I was dropping the ball somewhere. It sucks to feel that way but fast forward to year 43 of my life, and I recognize that I could have done things differently.
One of the things I wish I had done was find help. What I mean is finding someone to advise me and help me to navigate some of these difficult financial situations. Even something like this to help out with budgeting.
Things are much better now but still not perfect. I still need to be able to adapt, especially in regards to running my own business, and even more so as a result of COVID. I know I did the best I could at the time but I still carried a great deal of shame because I couldn’t do better.
I’ve since learned that these challenges don’t define who I am. What really matters is how I rise to the occasion, as well as my ability to adapt and grow. The people I love deserve the best I can do.
This isn’t just a special needs parenting issue, I’m just approaching it from that perspective today. There are so many amazing parents, especially single ones out there who have overcome so many things to get where they are.
If you’re able to relate to any of this, I truly hope that you take comfort in knowing that you aren’t alone. Reach out for help if you need it and don’t wait until things are so bad, you can’t find a path forward. I know what that feels like. I’ve learned to be creative and think outside the box. I’ve shifted my focus in order to allow for new possibilities or opportunities. I encourage you all to do the same.