- By Gw Daddy
- With No Comments
- On 23 Nov | '2015
Hello parents, friends, members of Team Gillywacker.
Since the beginning of time I guess. We Special Needs Parents have favored the statement “They Just Don’t Understand”. Normally at this point I would say “My opinion”. I don’t think this really is just an opinion. I suspect, although I have no way of proving it, “They Just (really) don’t understand” is often fact. The point of this entry into my blog is to say. We the parents are in a large part responsible for this discrepancy.
My mother and father were excellent role models when it comes to parenting and children. Mom, always happy to have our friends over, always happy to make sure there were activities and yummy eats available. Mom Treated my friends well and I believe genuinely enjoyed playing host. When people came to visit our childhood home, children were always welcome. I have always believed Mom enjoyed the visits as much as the visitors. And dad, He was no slouch in this area. Not only at home, but at his work it was not at all uncommon for him to take a break from business to entertain a customers child. Dad also seemed to personally get as much out of these interactions as the kids he was entertaining. They both undertook these task’s like professional parents. Knowing what was appropriate for what age group. Mom was just as quick to set up and participate in sparkly crafts with little girls, as she was too throw a football with the ornery little fella’s that came to play. Dad’s approach while not quite as polished as mom’s. Was equally age, and gender appropriate. Most importantly I believe everyone including themselves had fun and enjoyed a good time. Fundamentally, unless there was some specific situation like being allergic to butterfly’s,,
This was not lost on my brother and I. Over the years I have seem similar situations when visiting with Steve and Patty (brother and sister n law). Patty would set up parties for the kids. My brother Steve was always a participant if he was home. The same goes for my wife’s side of the family. Everyone genuinely enjoys to company of kids. Everyone engages in the kind of play or talk that most would consider “Normal”or “Typical”.
Much of this entry I am going to use my dad as an example. A guy that is just as likely to play a game of chess with a 12 year old, as lay on the floor driving hot wheels cars through a make believe linoleum kitchen town. My dad really does not watch, or babysit Chloe (Daddy’s Girl). Dad has always been a master at avoiding tasks or conversations when he felt they needed avoided. I have to admit. It’s been a sore spot with me. What makes that worse is knowing how much he enjoys play, how much he enjoys sharing advice, and how much he savors a chance at being someone’s (especially a childs) hero. So for many years,,,, Well lets see, 13 years to be exact it has been one of those kind of unspoken grey area’s that neither of us really feel comfortable talking about. The more I think about this, it seems to be a grey area for lots of family and friends. When we have one of the long overdue visits from My Brother and his family. They try, they really do. At the same time we get the awkward looks like a cat on the ice,
that says we really don’t know what to do????? There is no question in my mind when my wife’s mom, sister, or aunt visit that they would absolutely love to engage and have a meaningful relationship with Daddy’s Girl. I can see it clearly as day in their eyes, that look to me reads “We wish”.
Recently I have noticed more than several post’s on FaceBook by peers of mine (special needs parents). Post’s about how they have lost good friends as they entered into the special needs parenting world. Mostly these posts are not about putting down the friends they lost. Rather they have been about thanking the friends they have gained. Some are about the sorrow they feel lossing such long term, closely held friendships. So I really begin to look around. While looking around I tend to look at myself. The truth is I am uncomfortable around special needs children. I don’t know how to behave, what I can, and cant do. And to be painfully honest, I am uncomfortable around their parents. It’s no easy thing knowing what can be talked about, What offends, or What endears. We are lost, The thing is, We (special needs parents) at some point, have to accept our responsibility in this difficult situation.
Now to the meat and potato’s of this post:Everyone know’s,,,,,EVERYONE KNOW’S! that the rules have changed. Back to the beginning of this story. Mom and dad playing with all the kids, Family and strangers alike. Kids within varying age groups, genders, and ethnicity. For the most part, They knew the rules. Talk baby talk to babies, expect spit up and potty accidents, little toddler girls, and boys like to run and laugh. adolescents play games, girls talk, boys like disgusting things ect. ect. . Parents,, my Mom and dad, your mom and dad’s all have many shared experiences. Lot’s of common ground. Really that statement can include pregnancy to adulthood. Yes I’m using my parents for examples. But I think this applies to a very large part of the population.
So now, out of the blue, they are starting from scratch. In our specific case. How does one play with an Autistic child who has no interest in playing with you? How do you talk with a child that does not talk back, or even animate like they understand what your saying? In our specific case. When does the conversation change from simple easy to understand speech to more casual adultish conversation? My parents, most people I suspect are just are unsure how to interact. My dad’s favorite phrase right now is “Sometimes people just don’t know, what they don’t know”. What they are pretty sure of is, they can get it wrong. And if we (special needs parents) are not sensitive to this. They can get it really wrong. Not only can they get it wrong. A large portion of the blame for them getting it wrong will (should) lay at my (our) feet. This is going to be a terrible analogy. If someone gave you a scalpel and told you to perform open heart surgery. Most likely you going to say “Hell no”. Not necessarily because your afraid of blood, not because you don’t want to help. Because your afraid to screw it up.
The Plot thickens:
One option is talk with us (the parents). The hitch in that giddyup is while they are accustomed to talking with parents. Most of our parents after all, are themselves parents and have a lot of common ground to build on. They may have little, or no common ground as special need parents. Where do they start the conversation? Lets take a second and admit one more small truth. We (adult humans) do not like to admit we don’t know, or do not understand stuff. Especially when that “stuff” is supposedly simple like how to interact with a child.
Ok we (I) feel confident talking will go a long way to resolving much of the anxiety. How to talk with parents of special needs children? New parents as a demographic by themselves (not necessarily special needs) are a difficult group to talk to. They all think they have discovered the wheel. Read a magazine story, clicked a link in the web, and have the exclusive “Key to the Mint” for parenting. The parents in this conversation however, are parents of special needs children. Again my dad has really no base, no foundation to intelligently breach those kind of conversations in the first place. He would have to spend countless hours reading what I read, researching what I research, and being in our (my) “actual boots on the ground” to go there. Even if those limitations could be overcome. You now are confronted with. What is, and what is not offensive to the parents? What topics are off limits? When does their effort in understanding become an insult to our (my) hard fought battles and countless hours of research?
Ok I believe it’s safe to say, THERE NEEDS TO BE A CONVERSATION! This is where I think things get to the “Immovable Object” stage. WE THE PARENTS OF SPECIAL NEEDS CHILDREN! are not always sure of the rules ourselves. In the world of Autism for sure. But I would also imagine this to be applicable for many other diagnosis. We are really not sure of ourselves. I can (and have) literally read for entire weeks, intervention’s, strategies, works of understanding, that are absolutely and completely contradictory of one another. Often (speaking for myself) I choose a path, unsure but hopeful. I (We) choose this path not because I know it is the right path, but because I feel that I have done my due diligence weighing risk vs value. I am hopeful have chosen correctly. Because we (I) have made this decision I now feel the need to defend it. I know it’s wrong,,,,,I KNOW IT’S WRONG. But I find myself doing it anyway. My ego does not want to believe I wasted an endless number of hours researching, not only looking at reports, but getting into the nuts and bolts of studies methodology ect. Only to be proven wrong by someone who caught then end of a Today show segment.
So what the answer? One of my favorite people in the whole world passed awhile back and I ran into my cousin at the funeral. Daddy’s girl had become uncomfortable with the acoustics of the church so I went out side to try and calm her. I had not seen or talked with my cousin for probably over 20 years. Not because of any issue, we had just gone our separate ways. He came outside to visit and I explained the situation. His simple words made the “Immovable Object”, move. I had mentioned Daddy’s Girl was Autistic, his reply “So what’s that like?”
I say if your an outsider looking in. Question,,,,,,,,Use a very broad question, then Listen. That’s the key.
I hope simply writing this. Putting my words and thought’s down for all to see. Makes that “Immovable Object” less firmly in place. I always hold on, that hope and understanding is the key to finding common ground. A place to start, not standing still. I have tried my best to come up with the most simple solution. Something that deliberately did not address they abyss of all available disabilities with their equally daunting number of accommodations. Start with a simple question, Then take your time to listen. It’s not that I am closed off to your solutions, or advice. It’s that I (we) want to be heard. And that anything you say after listening will have much more meaning. It will have more meaning because it will come from at least a basic foundation of understanding.
Grandparent, family, friends.
Yes the rules have changed. The rules for interacting with our kids. The rules for interacting with us. Please DON’T GIVE UP ON US! If you want to be a meaningful participant. LISTEN. We want you with us. We may not always open up to you because it would first take a significant amount of time, Second we are oftentimes, unsure of ourselves. We want you on our team. Soon you will come to see how extremely rewarding our lives can be.
Parents of special needs children.
This post was as much for your as it was for those outsiders who would like to be in our lives.
It is incumbent on us, to do what we can, making ourselves and our children available. Sharing, is a critical component for the people we love. We frequently ask for empathy/understanding from others. It’s time for us to practice what we preach, to be good stewards of empathy, and understanding. To lead by example. We are asking of others, something that (for the most part) was not “asked” of us. Take the time to explain things. Explain them as often as we are asked. Leave room for opinions that contradict our own. That contradiction most often is not adversarial, it is a clue that others are actively taking an interest in us, and our children. We are still, and always will be shot callers for our Children . It’s OK to not always agree, remember to do it politely. Remember that’s OK if their not comfortable with some stuff. Often I am not comfortable with some stuff. I (we) most often have no choice other than to get comfortable with it. We can work around weird and or uncomfortable.
There is so much to be gained by going the extra mile trying to keep people we love in our lives. Understand at times this is no small request from us. Remember these are People we love, people who love us, People who can share our wins, and people who can lift us up when we fail. These people should be “On our Team”.
I know, at times this is a major Pain In The ASS. In the long run I think we will all be in a better place. And yes I understand some people are just “AssHats” right out of the gate. I suggest it is ok to laugh at the AssHats in our lives. Ultimately they are the one’s who lose the most.