I had a really bad day yesterday. Special needs just got to me. I was fortunate enough to get support from good friends, one of whom said to me, “God gives you what you can handle.” I can’t count the number of times I’ve heard this since my son was born with Prader Willi Syndrome nine years ago, but what I told my friend who consoled me was “God must be in need of a hearing aid because I can’t take anymore today!”
The truth is, I don’t believe this “God-giving-you-what-you-can-handle-business,” because it smacks of the notion that God (if you believe in one) chooses whose life to screw up royally, devastate and bring pain and suffering upon. My belief is that this $%^& happens, for the most part, randomly and that every parent rises to the challenge when they are put in this position, not just me or all the other people whose lives have been forever altered with a child with issues. If a parent cannot deal with it and is negligent or unable to function, they need to seek professional help and support of friends and family. Email me if you need that and I will hook you up (I am a Social worker, you know).
For the most part, we parents get by with the help of supportive friends and if we are fortunate enough, family and other parents of children with issues who can truly relate. Sometimes just being in the silent company of people who “get it” can be relaxing and helpful in our often stressed out day to day life. We can vent, use dark (sometimes very dark) humor about our kids and our situations and describe how painful and hard it is to live this subculture of isolation, bullying, perceived slights, judgment and exclusion and real slights, judgment and exclusion. (By the way, perceived slights, judgment and exclusion are just as painful and emotionally exhausting as real ones).
I wish I were here to tell you that with all of the support of friends and relatives that we in this alternate universe of special needs parenting can get by pretty well. For the most part it is true. However, I feel the need to be the voice of special needs parenting honesty and must tell you that despite the support we may have, and I believe I speak for many, that from time to time we will simply lose our *&^%.
There may be no rhyme or reason why we lose our &^%$. It may be a look our kid gets from another kid, if may be upcoming family events that are stressful, it may be watching a sad movie. It can be anything. Or nothing.
Just know that sometimes you may see us and we may have black circles under our eyes from physical or emotional fatigue. We may look like we have been crying or we may not have the usual spring in our step or sing-song in our voice. It doesn’t mean we necessarily want to talk about it but we may. Just be nice to us. Offer up a play date and/or a kind gesture of sorts. Ask us how things are going. We may feel like telling you or we may not but it’s nice for us to know we can and that the door is open.
The way I explained it to someone recently is that our plight as parents of kids with special needs is a chronic condition that rears its ugly head in an overwhelming way at times. We explode in however way we explode as individuals (ex:crying, yelling, losing our patience, being reclusive, acting out, etc.) and then we get strong in between the explosive bouts, hoping that it doesn’t happen again soon but preparing for the inevitability that it will.
How do we get strong in between the bouts? We do what we love, we appreciate and enjoy the good things in life the best way we can, our family, our recreational activities, our work, and we acknowledge and appreciate the supports we do have to maintain those ties and love. We need those ties and love. We express our needs to those we love and who love us and hope they will be there for us when we need them. Alternatively, we become very keen at knowing who in our world is toxic and we stay away from them. They are not only of no use to us but are damaging when we can be fragile, often more fragile than your everyday parent.
Today is a new day, and I am getting stronger for my next bout by cooking a soup. My husband really loves my new red lentil with lime soup. Feeding him foods he loves makes me happy. And strong.
What will you do to stay strong?