I have learned a lot being a parent to a special needs child over the last eight years. Here are a few things:
•It’s okay to have different expectations for your children.
Even in normal households, I believe this to be true because each child requires a unique approach.
In our world, our expectations for our children vary tremendously. While the school hopes for each kid is entirely different for obvious reasons, I am referring here more to general life.
For example, if Beckett threw a fit in a restaurant because we were sat at a different table than our last visit to the same place, there would be a consequence. If Carson did it, which happens all too often, we shrug it off and focus on redirecting him to something positive about this new location.
If Beckett says something unkind to a friend, the consequence for him would be entirely different if Carson had a rough day and was not a good friend.
Beckett, of course, is aware of this and it brings a host of challenges for us. However, it’s also a lesson in tolerance for him that we hope will serve him well in life.
•Expect the unexpected.
Unexplainable things happen often with Carson. There is negative behavior that shocks us because there’s no rhyme or reason to it.
There’s no explanation often for a negative decision he makes or a physical outburst and that’s troubling. All we can do is be on our toes at all times and apply consequences that matter to him to encourage him to make wise decisions and control his body.
•Picking battles wisely is a key to life.
For example, if our son who struggles with transitions in a big way wants to bring a stuffed animal from home to school, I don’t sweat it. I’ve learned there’s no reason to be embarrassed if it makes him feel good for me – a 42-year-old man — to carry his stuffed moose in my arms while he carries a stuffed bear on the walk from the parking lot through the halls to the classroom.
Whatever it takes to get him off to a good start with his day is the priority.
•Patience is a must.
I am a patient person. I would never have been able to claim that before becoming a dad.
Beckett, our so-called “normal” child, is a test of my patience at times but it’s more about the typical obstacles found with raising children. The patience required to raise Beckett pales in comparison to Carson.
It’s a cerebral sort of patience when it comes to raising Carson. There’s an order and a certain level of constant engagement needed with him. It can be exhausting, but I’ve learned there’s no reason to question the why when that drains more energy.
Everything is not going to go as I wish. Planning too much is oftentimes fruitless and frustrating. It’s not always fair but life is not about that.
•Celebrate all the good stuff.
The good days are worth celebrating because life is complicated by his disabilities, none of which have an easy fix and will require years of therapies, continual commitment and tough love.
We never stop worrying about Carson. The same can be said for Beckett, but it’s different. Rather than dwell on what keeps our mind distracted and uneasy over what we need to do to keep him progressing, we focus on what we can do to better Carson’s immediate life for the best possible outcome. The dilemma is that’s always changing.
•Live in the present.
I don’t think about Carson’s future. At this point, I assume Carson will be with us forever. While I know there will be options for him and anything can happen in the future, I have found peace in that assumption.
This, of course, is not the route I thought parenting would take. However, at the risk of being overly spiritual, our course is in God’s hands. I truly believe Carson’s progress and recent achievements in speech and other arenas are a result of his inspiringly strong work ethic, our devoted commitment to him and God’s will.
Putting our course in God’s hands keeps me calm.
•That some people’s discomfort around my special needs son should not be judged.
The fact is Carson, like others on the spectrum, can be socially awkward. Not everyone knows how to handle that. The result oftentimes is a level of disengagement that seems rude.
It’s to the point to me now that I ignore obvious signs of uncomfortableness around him. He’s a young boy. He’s different in some ways but the same in many.
The great thing is Carson will every now again sense this uneasiness and address it with a random hug.
•My perspective will never be the same.
I look at everything different now. This may not always be the case, but I currently view life through macro lenses. Everything is about the big picture.
That’s not to say I ignore anything on the daily level. I just try to take everything into perspective. Certain things happen I can’t control and they are not a result of bad parenting. It’s beyond that.
