My parents named me Daniel, but my mates call me Siri and I am the father of a son with a disability. I experience no joy from writing about his predicament; in fact it gets me annoyed. The only reason I am sharing these emotions is because my wife asked me to do it.
I was actually quite relaxed up until I started typing, but already I am feeling anxious, frustrated and a little guarded. Nonetheless, it’s not in my nature to back down from a challenge and the gauntlet has been well and truly thrown at my feet. Thanks, honey!
Let me explain … my son, Archer, suffers from Coffin-Siris syndrome, which is a rare genetic disorder. According to the experts… ‘the disorder may be characterised by abnormalities of the head, resulting in a coarse facial appearance. In addition, affected infants typically have malformations of the fingers and toes and eye abnormalities. Feeding difficulties and frequent respiratory infections during infancy, diminished muscle tone, abnormal looseness of the joints, delayed bone age, developmental delays, hearing loss, and intellectual disability may also be present. The specific symptoms and severity vary among affected individuals.’ A real mixed bag of issues!
I must admit that so far the experts have been on the money and I will be eternally grateful for getting the diagnosis after a long, long search for answers. It’s not that I was overjoyed to hear about my boy’s ailment, but “knowledge is king”, “it’s better to know than to not know” … you know what I mean! It allows me to prepare a little better for what challenges may lay ahead. In saying that, you can only imagine my joy when I was informed that my son suffered from an affliction that paired my nickname (Siri) with my worst fear in life and a most poignant reminder of my own mortality. I mean it’s fantastic that scientists are recognised for their amazing discoveries by having syndromes or stars named after them, but it would have been nice to have Professor Arthur Fonzarelli or Doctor Elvis Presley identify Coffin-Siris syndrome. Being told, “your boy suffers from Fonzie-Presley syndrome” may have softened the blow … if only a little.
Archer is almost five and he has an older brother named Luca, who is almost six. They’re Irish twins and although I’ll never ever say that Archer was an accident (mum used to say that to me when I was naughty, which was often, and it did little for my self esteem), he was an unexpected gift. Recently my wife and I were having a “healthy” discussion in relation to sharing our time between the two boys equally. Archer has a tendency to be a little more demanding than Luca and my desire to see him flourish often means that Luca is left to his own devices. During our rather civil and poignant exchange about how well we appreciated one another and how fantastic our individual parenting styles were, I made the comment that, “perhaps we should spend a little time with Luca as Archer is already broken and we don’t want to break our other son”. I then put down my glass of red wine and walked out of the room defiantly.
What a dick! Yes … I know … it was a terrible thing to say and I have difficulty reliving that despicable moment or retyping those appalling words. But I said them and now I have to own them. Whilst I regret saying what I said in the manner that I said it or drinking a fifth glass of red wine, my point was this … whilst Archer has a disability, Luca has special needs and they are the needs of a healthy, well adjusted six year old boy that are equally important as Archer’s. What I should have said was, “whilst we focus so much on striving to ensure that Archer is afforded the best available opportunities in life to grow, develop and prosper, we can’t forget about Luca”.
Luca’s needs are not unique to a genetic abnormality or specific developmental delays, but they are intrinsically linked to him as an individual, a human being and are as equally important as his brother’s. It would be a gross injustice to neglect or dismiss these desires. I try not to do it to Archer, but do I try just as hard to pay attention to the needs of his sibling? I don’t know.
My point is this … as their father, I have special needs and as their mother, my wife also has special needs. We all have special needs regardless of whether we are born with a clinical diagnosis or our lives are afflicted with one. My needs are not more important than yours, your needs are not more important than your loved ones needs and Archer’s needs are as equally important as Luca’s. I try not to forget that and hope that it enables me to have a well-balanced approach to being a husband, father, work colleague and all round person. I started this dialogue by stating that, “already I am feeling anxious, frustrated and a little guarded”. An hour later it’s impossible for me to relate to those emotions anymore.
I also stated, “the only reason that I am sharing these thoughts is because my wife asked me to do it”. Perhaps her desire to encourage me to express myself and to have an outlet for those emotions was one of her special needs. Perhaps it was also one of my own special needs but I wasn’t intuitive enough to identify it! Who knows! I also said earlier, “thanks, honey” and I’m not too proud to say it again … “thanks, honey”.