For my In My Kitchen series post, I will be sharing a series of pictures from my kitchen and a swirl of thoughts that have been going through my mind as I made May Day donuts for the children…and adults.
Last fall I visited a design fair where one of the companies there, was presenting their version of the mini house. They were lovely, contemporary in style and I could imagine that it would be perfect near the shore of the lake where the rather large windows of the mini house would let in the scenery and the natural light so that you would never want to even close the blinds. Not even in during the night so that the first rays of soft morning light would be uninhibited. The salesman came with his eagerness to sell of course, that was his job. I said that I was not buying now, but was certainly interested in their concept. He asked me about my needs.
I said that I have an intellectually disabled child for whom we have thought that perhaps, we might someday build a mini house on the property. She definitely is able to care for herself and do many daily chores, but there are a few things she needs support with. The conversation nearly stopped. He fumbled a bit in his sales pitch and soon I was left alone with a leaflet in my hand. It was actually the first time I had used the term with a stranger after her diagnosis. She’s had several diagnosis over time, as it has been evident that academic learning has always been a challenge.
I didn’t have hard feelings towards the saleman, although I did feel a bit sad when the reality sunk in. And in some ways I understood him. I might have been that way twenty years ago, before I had experience with special needs. I’m not sure if I would have left him standing alone, but I would probably fumbled with my words. To tell you the truth, I was ignorant as a child and youth as probably most kids are. No one can know everything and there is a reason we grow and learn throughout our lives. As a kid, special needs to me was synonymous with down syndrome. I didn’t realize the whole spectrum of special needs that I have grown to know through my children and the people all around us. Most of us have challenges in one area or another even if we do not have a diagnosis. We have two children with different types of special needs.
Very rarely do I use the term, intellectually disabled or kehitysvamma, as we say in Finnish. It is such a strong word that it takes people aback even if the adjective mild is added in front. That is why I usually use the term special needs, it allows the listener to keep listening and brings ease into the conversation because it is so ambiguous. Most likely if I had used the term special needs, the salesman would not have fumbled with his words. It is not about hiding the reality. It is about giving my child the opportunity to be seen as a unique person with many skills, without being automatically boxed into a category that might not actually be accurate. Just like my categories were rather ignorant and incomplete years ago, perhaps the salesman’s categories were as well. Actually they are never complete. I don’t think we should be afraid of categorizing, as long as we don’t allow it to resrict us. It is simply how our human brains are built to organize the information that comes at us every second of the day.
The other week I had the opportunity to participate in a course for parents’ with special needs children. I had been a bit slow in previous years to participate. Sometimes the role of being a parent to children with special needs seems so heavy, that the thought of discussing about it for a weekend and letting out all those emotions that sometimes get put on the wayside during daily life seemed energy sapping. I could not have been more wrong. I do not know when I have cried so much. But it was not a heavy, saddening cry. It was a cleansing weep that came from somewhere deep. It fulfilled a need that I did not even know was there. And we laughed. Those deep belly laughs that bring tears to your eyes. I came home with a lighter step and with the resolution that next year I would be there again, this time with my husband.
I have very rarely even mentioned on social media that I am a mother to special needs children. If you look at pictures of our children, you might not be able to pick them out. I have felt a bit torn. On the one hand it is such an important topic to share and learn from each other. They teach us about the importance of truly connecting with people, compassion, unconditional love and grace in a sometimes hard and competitive world. And then on the other hand, I feel the need to protect the privacy of my children. Even now it requires sensitivity and the recognition of the boundaries of privacy, and I weigh and reread each word. But it really should not prevent the discussion of special needs or make us afraid of it. It only means we need to be more creative creating the approach to the dialogue while still respecting our loved ones.
The course gently encouraged us to see our children as perfect creations, with their own place in life and their own unique path to walk. Perhaps they are here to remind us about some of the most important things in life.
Every parent wants to see their children to find satisfaction, fulfillment and to be happy. Sometimes the gifts of a special needs child need a bit more effort to be uncovered and it requires us to see past the disability.
In about a months time the last day of the school year will have arrived. And I will once again think back over the past year and wonder if we did enough. I would like my youth to take wing and be as uninhibited as the light that filters in through the window.
In My Kitchen is hosted by the lovely Sherry from Sherry’s Pickings.