At Not The Former Things, Shawna’s writing gives the world a candid view of a family with special needs children. I’ve been following her blog for a while now and occasionally leaving comments. Recently, she kindly asked me to write a little from my perspective as a dad in a family which has special needs as an ingredient.
The following post was originally posted there, but now I am posting it here too, with a few corrections and adjustments. There was so much I wanted to say, I hardly to knew where to begin. If you can imagine trying to mould a half inflated party balloon into a cube with your hands; it was like that in my head.
Many who read this and know me, will be wondering why I am banging on about having Asperger Syndrome or being on the autistic spectrum – “You seem okay to me…”. That’s fine, you’re right. I am okay.
Asperger Syndrome isn’t like having a missing leg or something. It’s more akin to a wiring issue in the brain. It affects some people more than others. For me, the wiring differences are very subtle, allowing me to cope fairly easily with most of the things that life throws my way. Although, there a a few areas where the wiring differences present unique challenges.
The symptoms, for me, are largely internal which is why no-one every really notices. When they present externally, they are relatively mild so I just appear quirky, cranky or at worst rude.
By way of a little background, I’m one of those guys who likes my ducks in a nice tidy row, yet my family consists of some rather fast moving ducks. Two ducklings, 12 and 16 and Mother Duck. Over the years, Mother Duck has helped me gain a degree of patience and understanding of how much of a row these ducks need to be in, and whether they even need to stay still.
My family is a weird mix of Asperger Syndrome, dyslexia and undiagnosed ADD. I was diagnosed with AS in my late 30s which sounds better than saying “when I was nearly 40”. My oldest son had been diagnosed a good few years before, and through that experience we could see some of the same quirks showing up in myself.
The relationship of an AS father relating to his AS son has it’s own unique mix of both challenges and blessings. We speak directly to each other, sometimes too directly. We explode quickly, and we calm down quickly. We are comforted by stability and routine.
Shared special interests with both of the boys gives us a common meeting ground. With the older duckling it is a deep interest in computing and with the younger duckling there is a passion for music. Within these two special interest areas I can connect easily with the boys but trying to find a connection outside of these areas is difficult. There is much more to their lives that computing or music and this is where I draw on Mother Duck’s support
Family and parenting is all about relationship, social interaction and emotion. Coping with this can be a real challenge. An eye-opening article challenges the notion that folks on the autistic spectrum are devoid of empathy. It goes on to suggest that many of those on the spectrum are more empathic than most, leading to them being easily emotionally loaded which leads in turn to a classic melt-down or withdrawal.
One of the hardest things for me about all this, is dealing with change, and when you have kids, change is all you’ve got. From the moment they are arrive, they are wanting to grow into their own person, continually challenging the established structures of the family in the process. For myself, this really can be the most difficult thing in the world.
Now that the teenage years have arrived, the structures which have been in place for 15 years or so are now starting to bend and break. The immediate reaction is to apply extra pressure to keep everything in place and from moving out of line. This isn’t so much from panic, although that is a component, but more just a deep sense of “But it goes like this…”. In my rational mind I know things need to change, but how to make, or even allow, this change?
Let me paint a picture of how change can feel for someone like myself. Imagine a train on it’s tracks. It needs to move to another set of tracks. For most people, they can pull a mental lever, the points shift smoothly and the train rolls along towards it’s new destination. Another change of plan? Easy, pull another lever. For myself there are no levers or points, only many parallel tracks. To move the train to another set of tracks requires me to lift the whole train by thought power alone and carry it across to the appropriate set of tracks. I then need to ever so gently lower it down, making sure that all the wheels are perfectly aligned and that none of the couplings have come undone. Can you feel how difficult and tiring that is? Another change of plan? Ain’t gonna happen easily. 😉
The importance of diagnosis
Long before his AS diagnosis, my oldest son was at school where they were talking about friends. He was around 5 or 6 years old but already had classroom assistant assigned to him to help out. During the discussion he suddenly volunteered the information: “I don’t know much about friends, but I know about trains.”.
For us, this was the beginning of our walk with Asperger Syndrome. When the provisional diagnosis of “Pervasive Development Disorder / Not otherwise specified” was refined to “Asperger Syndrome” there was for us, as with many others, the sudden jolting moment of realisation – okay, now what? Shawna has written eloquently about this process here.
Since we now know that we share similar brain-wiring it’s easier, I think, for him to take guidance from me [citation needed 😉 ]. Also, having a few more years under my belt, and having this understanding has actually been a real help in meetings with school. It means I have been able to advocate for him at crucial points during his eduction.
The key thing for us has been the accurate diagnosis and appropriate support from schools and doctors. A decade later this young man is now preparing to choose which route to take for higher education, and he’s going to be just fine.
Like Shawna, I follow Christ as best as I can and whilst hammering this post together, a couple of bits from the bible have been floating around my head. Let me share them here.
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
The theology of disability is huge topic, but I hold that we are all children of God. Although the AS brain wiring can be a real pain sometimes, it also brings many benefits. For instance, our family gets it’s car and computers kept in good repair, and there is often live music somewhere in the house. We are wonderfully made and woven together by a master craftsman. All of us. Aspie and neuro-typical alike. For those of us with difficulties accessing the world around us, it doesn’t mean we are wrong, or broken – we are just different.
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
Everything’s going to be okay.