A Little Piece On Coping Today
Living A Life On The Spectrum As A Family
It’s Sunday afternoon and I have instituted quiet time for my family. I will have to remind my almost four-year old several dozen times that it is in fact quiet time. He will sit and wait for it to be over. He will not really play, rest, read, etc. He will wait. In addition I have offered my husband the opportunity to go upstairs to relax, calm down and find some clarity. This makes me sad that happiness is on the edge of extinction when we have to spend to much time together as a family. It is sadly clear, that weekends without a good deal of family support,pre-planned preferred activities, leave us on the edge of anger, frustration and impatience. Where once we were a happy couple, we begin to turn on each other out of frustration with our life on the spectrum.
No one but your spouse can understand the intensity of living with the spectrum, not even another parent who is there. If I have to hear another time how “all kids are like that”, “he will grow out of it”, or “it’s just a phase”, please understand when I stare you down and don’t want to talk to you ever again. I am not going to use this post to try to convince anyone of my case because it simply can not be put into words. What is most important is the man standing next to me, my husband and my partner. He understands it and continues to provide compassion, support and love every day. We need our partnership to survive this life right now. Yes, it will change. No, we don’t know how it will change. Better, worse, easier, harder, who knows? We are experiencing it all and the future is unclear, but that is life on the spectrum.
The weekends bring a sense of relief for me that I have someone to lean on for extra support as well as adult companionship. He is there for when simple living becomes challenging but this often creates more challenge. The difficulty of transitions, routines, and over stimulation brings new challenges. These glorious, waited for weekends also bring a sense of madness that results in huge amount of stress and irritation and wishing everything was a bit more normal. Every minute has to be planned, filled and moved around. There’s no time to enjoy a bit of quiet or even quiet family time with an activity. His intensity to be anywhere but here or with us is overwhelming for the two of us. Television is a hinderance and a refuge. A double-edged sword. Very often, there are no date nights, dinners out, and especially no real significant time away. Often times separate dinners start to happen because nobody has the energy or the interest for a family dinner. We often become so disconnected from each other, that when days become stressful, we begin to turn on each other without really knowing it.
Of course, the last thing we need to be doing is getting angry, with our child and with each other, but what can we do as a couple to prevent this. Clearly, we can not expect to live a perfect life. Who does? Most importantly, we have to, need to acknowledge that it is happening. We can acknowledge that we are angry, sad, or whatever, but without the ability to just pick up and send in a baby sitter, we have to work with what we’ve got.
Sorry to say that I have to go with a very abstract idea when all I really want is a concrete solution. Love. Our love for each other, before and after, our dear son came along. It is what still unites us and pushes us through. Love makes us pull together when we start pulling apart, even if we can’t remedy the situation. We remember the times before and we talk about the times we will have again. We share the future with each other and know we are headed into the future together.
This sounds like a crazy, easy answer to some looking for something to grab onto, but all I can say is to grab onto love. Reach out and simply take your partners hand to silently acknowledge, I am here with you. We will move through this together. Simply, I love you. I don’t imagine we will have a real dinner and movie night or a night away anytime soon, so we have to work with what we got. We are living life on the spectrum. Our son is on the spectrum and as parents and as a couple we are too. Acknowledgement, acceptance and mainly love will carry us far.