Really, I don’t need to tell you that raising a child with special needs is one of the toughest challenges a parent - mother or father - could be tasked with. Parenting, in general, is a very tough task but when you have many additional ‘needs’ on top of that, the challenge is emotionally and physically exhausting.
I’m a father of an eight-year old with cerebral palsy, a typical two-year old and a six-month old - the latter has yet to be diagnosed but we’re pretty sure she will have cerebral palsy due to a medical-error induced brain injury. Perhaps your child has a different diagnosis or even none at all as our youngest does. That’s ok; we’ll find our common ground as parents.
Since the phrase “special needs” covers such a broad spectrum of diagnosis and types of children, we’ve all earned our qualifications to share our truths about raising, nurturing and improving the lives of our children, so I hope the information below helps you on your colossal journey as a parent.
The first thing I’ve learned as a special needs father is that full-proof plans are a fallacy. My wife and I can recall countless times when we’ve thoughtfully planned, planned and planned some more - only to find out that the next step, whatever it was related to, was never how we had imagined it to be. Our planning ranged from when we’d have a procedure or surgery scheduled to how we were going to execute a flawless family vacation or a simple break from parenting (if we ever were able do so…).
We wasted so much time planning for the best times, scheduling to having a simple dinner, but our child or circumstances always willed something different. For example, I can recall a simple drive to our parent’s house turning into an emergency room visit. We’ve learned over the past eight years with our children that we have to be quite flexible and take each day for the joy or heartache that it is.
Now, we live each and every day in the moment, but still simply draw out our rough roadmaps in planning (and believe me, my wife is a super planner). All we can really do is try to be prepared for changes in plans (and attitudes) as each day or event unfolds. This approach has helped us remain calm and peaceful with each new twist and turn of our care-taking and parenting adventures. We’ve accepted that outlines for plans are ok, and we fill in the blanks as we go along, and communicate through the entire process so that we come to decisions as a team.
The second thing I’ve learned as special needs father is that you cannot sacrifice your family for your job. As the sole breadwinner in our family, I thought for a long time that working harder and smarter away from, and at home, would lead to more financial success thus making our lives easier. In some insignificant way it has, but in a much more detrimental way it has not.
Money is nice, especially for special needs children who have limited access to funding for all of the medical and transportation accessories they need, in addition to the numerous other things that insurance or society deems unnecessary to live day in and day out.
However, once I learned that my time is much more valuable at home, work took second fiddle to spending time with my family. Even though, I continually use a large portion of my vacation time for appointments, surgeries, etc, it was not the sacrifice I had once thought it was, nor were all of the extra hours of work.
The moments of respite that I provided for my wife were immeasurable for her sanity. The emotional support that she needed came from just having me at home more on the weekends or evenings. Skipping lunch with coworkers - a much-admired political move in corporate America - to join her for appointments or just have lunch at home with her as much as I could get away, have helped us cope with each challenge in more meaningful way. This also helped us work at a team and collaborate with great conversation to deliver our care-taking duties.
The third thing may seem obvious, but it’s important to understand that coping with having a special needs child is a grieving process, a kind of loss that only we can understand. I know about loss, too. Right before our oldest child was born, we lost her twin sister, just a week before the other's premature arrival.
We did not have time to grieve the loss of the unborn baby because we had medical challenges and a long stay in the NICU. We launched into care-taking and the emotional toll of everything was drawn out over a five-year period. We still grieve that loss, but we eventually got to a point when we were ready to try having children again.
No one can tell you how long to grieve or which emotions you should feel when, but there are numerous handbooks (and professional counselors) that can help you identify the different stages common among all humans experiencing some sort of loss – whether it be death, divorce or the loss of having a normal child. It’s a process that you need to identify and cope with, and there are many resources to leverage and it’s something you need not go through alone, or only with your spouse.
Fourth, even though your situation is unique, you are not alone so don’t act like it you are facing this challenge without resources. By resources, I don’t mean social workers or medical professionals, I mean other parents. It took all of the energy in the world for my wife and me to start going to special needs support groups, which were made available to us through education system, the health department and the medical community.
I remember when our child was just a year old and we attended a group comprising nothing but single and divorced special need parents. We quickly decided that was not the right group for us, but found others and attended them as much as we could. At first, we felt quite alienated. After a while, however, we began to make connections and nearly eight years later we still have many of those original connections to some really great special needs parents.
Each parent is very unique in their situation and their children are all different than ours are. However, we’ve been able to vent over the same issues, connect over the same obstacles and constantly share and improve the existing resources available to our children – a priceless boost that has not only helped us feel part of a larger society but also helped us have a social life (whatever that looks like for parents like us).
Fifth, as with anything in life, I’ve found that identifying what I was good at, what my wife was good at and playing on those would help us be a great team. The sooner I realized that I would never administer drugs exactly as my wife does (not changing doses of course) or changing diapers in the same orderly fashion, that’s ok. I do what fits my thinking and she does what fits hers.
We also know that we have weaknesses in this great journey of parenting, too. I can more easily separate my emotions from doctors and specialists to advocate, ask questions and apply pressure when we think something needs to change with the care of our daughters. However, I’m extremely emotional about many other things, as is my wife, and we’ve learned to identify those and come to terms with these subtle differences in our personalities.
We work together to share these emotions when the time is right. We also have been able to find the people in our lives that complement us with the strengths we don’t have. Primarily, we surround ourselves with as many positive people as we can, and shed ourselves from the people are who are not. It’s tough to do but the long-term benefits support our family needs.
We’ve learned a great deal from nurses during our stays in the hospital. At the same time, we never stop educating them. We’ve also learned a great deal from other parents about what’s available to us and constantly try to find ways to improve the mental, physical and sociological health of our parenting and our children.
While I’m sure you can think more lessons learned as a special needs parent than what I’ve listed above (which I could probably do as well), my hope is that this post will get you thinking about the valuable lessons you’ve learned and how you might share them with other parents like us. Just like our children, we have much to share with the world. The more we give, as our children give to us, the more likelihood we can create better understanding for our families and children - not to mention that the learning process never stops, just like our will to give our children the best lives possible.
Tim Gort is a professional writer who writes about his personal challenges and triumphs of being a special needs father at the family’s bog: http://thegortfamily.blogspot.com