I am an avid reader. I read tons of books and even more blogs. As someone who considers himself to be a part of the special needs community, I often read a lot of blogs about special needs families. Over the last two years one of the things that I have discovered is that there is a wealth of resources and reading material for parents who have children with special needs. As a result the term “special needs parent” has become almost exclusively synonymous with that scenario.
Let me say that I applaud and admire those parents and caregivers. They do a tremendous job and I am not the type of person who likes to pretend that they don’t deserve to be recognized. They do, but of all of the parents that I know that have children with special needs, they do it because they are parents. That is their child. That is their reason. That is their motivation.
With that being said, there is an entirely different population of special needs parents out there that can sometimes be overlooked and under-appreciated. They are the parents like me, parents who don’t have a child with special needs. Instead, we are special needs parents because we are parents and we have a disability. There are many parents with disabilities that care very deeply and passionately about their children. The primary difference is that we are special needs parents because we are care givers who at times need a little extra care for ourselves.
In 2014 at age 36, I was diagnosed with ASD (autism spectrum disorder). I had a family, a career, and 3 children when I was diagnosed. I also had lived my entire life struggling with something that was both unknown and unnamed. From the outside looking in I was a regular guy to most, but to those who knew me well, like my wife of 15 years, there was an obvious struggle.
I have to admit that I have been blessed. My wife is an amazing woman who is extremely supportive. Since my diagnosis we have embarked on a journey of discovery that has made life as a husband and father less complicated for me. We have learned how to allow me to slowly deal with my limitations while still being the best father that I can be to our three beautiful boys.
Special needs parenting and being a special needs parent both require passion and persistence, but being a parent with special needs has taught us four ways spouses and co-parents of someone with a disability can help to provide an environment where we can fully participate in raising our kids with the passion and love that they deserve.
Understand Our Capacity
Life on the autism spectrum can be a roller coaster for me at times. If I were to be honest, I’m not always sure when I will be up to performing some of the social tasks of fatherhood. Both my wife and all of our children are extremely outgoing. They love to hang out at the pool, walk around the mall for hours, and go out into the world with absolutely no agenda except to hang out all day. I have social anxiety, and I usually have the capacity to hang for about 2-3 hours before I have stepped over my limit. My wife understands that so together we organize activities differently. For example, they may plan a trip out on the town for the day, and I may join them around lunch time to continue the day with them when I am ready to hang out. This strategy has worked very well for us.
Learn To Take Our Cues
ASD sometimes limits my ability to pick up on social cues. Sometimes the world can be complicated because I may miss important cues. Nuerodiverse minds also have a system of social cues and because most of all human communication is non-verbal, we must both realize that we are both constantly communicating through a system of social cues. All behavior is communication, so my wife doesn’t just depend on me to pick up on neurotypical social cues; she has learned to pick up on my cues as well. This has been extremely important in our ability to parent together because she is able to understand the things that I am sometimes unable to verbally communicate.
Autism is a part of my neurology, not my psychology. In short, my brain simply functions in a completely different way. It is not always a matter of personal preference. While this is an unchangeable reality, the advantage is that it can enhance parenting skills because it provides our children with a very creative environment to grow up in. In addition to our different personalities, our brains function quite differently, and it promotes the idea that our approach to parenting must be creative and unconventional. There are no “traditional” roles in our home because we can’t afford to box ourselves in. Because of that our family is extremely creative in how we approach everything from disciplining the kids to how we vacation.
Allow Us To Have Some Control
One of the misconceptions about people with autism or special needs is that they are incapable of handling certain tasks. This is true with children, and it is also true with adults. While I admit there are a few things that I struggle with, there are other things that I am excellent at. Identifying strengths are a great place to allow for some control. What I am NOT advocating for is the right to be controlling, but what I have found helpful is to allow the special needs parent to have major influence in their area of strength.
For example, as a person on the autism spectrum I can be very detailed with certain tasks. Time is one of them. I am almost never late to anything because I have an internal clock in my mind. While my wife and I do not share the same sense or sensitivity to time, we find that it is much better to allow me to have a major influence on time and schedule sensitive issues such as getting the kids off to school, getting the kids ready for bed at their designated bedtime, or even planning out-of-town trips. Being late to something isn’t always a bad thing, but being on time is always a good thing, so it’s ok to let me take the lead on those types of issues.
Parents of children with special needs answer the call every day to love and be caregivers for their children. For that I am grateful, but I am also eternally grateful for those of us who are special needs parents because we too answer the call every day to care for our children as we live life with our own distinct needs and challenges as well as our own distinct gifts and graces.
A version of this post appears on autismpastor.com