Nineteen years ago I started working in a group home setting with adults who had some pretty special needs. They ranged from 20's all the way to 50's or 60's in physical age, and much younger in "mental/emotional" age. I never dreamed that years later I'd be on the family side of the coin, with support staff in our home and eventually helping with an adult son in his own supported living.
Things have changed since I first started working at the ripe old age of 19 (or 20--I forget, it's been a while) with special needs adults. For my husband, he started out in the 80's working with special needs adults, and things have significantly changed. Rules and rights have changed for the better, living conditions have changed for the better, and the quality of life for our special needs family members has increased.
This letter is to those who help make it happen:
Dear Support Staff/Direct Care Worker(s):
Each day you come into our children's lives, whether they're young now or adults attempting to live away from the nest. You are a part of our family, an extension of our little group that has been grafted in by employment but loved nonetheless by our child. The days aren't always perfect, knowing how behaviors and day to day needs can be quite challenging, but you persevere.
You are an answer to prayer.
The job you've taken on isn't always easy. The pay is low. I really do wish we could give you more, but reimbursements and funding for support goes down each year. This is something we can't control, but is in the hands of our legislature. In fact the pay is lower now than when I started out almost 20 years ago. I don't like it either, I would love to give you much much more, as my child's care is worth much more than minimum wage. Special people like you who have the heart and patience to work with children like mine truly deserve more than I or our agency can pay.
We as family, we see how you work odd hours. You tailor your life in order to help our child have a better one. You accept the evening and overnight hours, sometimes double shifts, in order for our child to have the supervision that he needs in order to remain safe. We know you could be doing something else, like sleeping, at night. What you're doing now, we once did when our child was younger. We've spent the long nights awake and consoling, entertaining, tending sickies, and so on, and downed many barrels of coffee. Now that our son is older, it is reassuring that he has you to watch over him and help him stay safe. He still doesn't understand fully what to do if a fire starts in the night. He will still be very afraid if a thunderstorm passes through in the wee morning hours. He feels safe knowing someone like you is there to help him.
Your patience is tested many times. We all know this, as ours has been too through the years. Average folks have occasional meltdowns in anger or frustration, and our special needs folks have many many more as they can't express the feelings like we can. Our son is no different. You've handled the meltdowns due to fear, anxiety, not wanting to do what's asked. You've learned to see triggers that show he's ready to blow and been able to calm him when others couldn't. You've helped him release that frustration and anger in ways that didn't hurt himself or others. It takes a lot of caring, patience, and understanding to work with children like ours. Not everyone can do it. Some days WE don't think we can do it. But, you're there plugging along even on the worst days. We see and appreciate that more than you'll ever know. You don't give up on the hard days, but instead return at your next shift as if nothing happened and ready to start anew.
We appreciate that you're on time, ready to start the shift, and there when you've agreed to be. We so depend on you, and slight deviations in schedule really affects our son. It can affect just about any special needs person who relies on routines and schedules. You don't see how our son stands at the window and gets excited knowing you're coming, nor do you see how anxious he is when something happens beyond your control and you can't be here right on time. Those latter moments we use for a teaching tool, that things do happen that we can't control, and it's a part of life. We appreciate so much that you don't call in regularly, that you really do try to be there.
Our son loves how you take him out in the community, to places we wouldn't normally go ourselves. He loves movies, ballgames, arcades, Walmart, etc. He loves having someone take him to those places, to spend hours at a time in each place if possible. In these seeming harmless adventures, you help him practice socially acceptable behavior, and little by little show him how to do things independently. You help him navigate crowds, handle money, tell time, and once in a while the meltdowns in frustration. You help him learn how to order food from a menu, how to eat in public without wearing most of his food and burping the alphabet for all to hear (with a huge cheesy grin on his face). I imagine the restaurants are appreciative of that too.
Thank you for helping him make his meals at home. The fire department no longer has to be on stand by. It is good that our son can make something besides a salami sandwich. It's even better that you're there to make sure he doesn't burn the house down. You're help with his meals and the planning of them also means he won't spend his entire food budget on candy and Gatorade. Not that he'd try....
Thank you for becoming a part of our family. We care about you, about your own family, and want you to know you're appreciated. We know that you won't be with us forever, but we're glad to have you while you're here. By all means, share with us your family, how things are going at home, and so on. Tell us about Aunt Martha being sick, so that we may pray for her. Tell us about the good things too, like how your own child won an award at school or got on the honor roll. We do care. We may share odd and end things with you as well, as there's times we may need that sounding board that no one else would understand. You are a fresh set of eyes in our son's world, in our family's world, and you may have a view that may help in a situation not completely related to our son's care.
The days are long sometimes, and the pay isn't all that great, but please know, you are appreciated. Thank you so much for doing what you do. Because of people like you, kids like ours can live more of a "normal" life, with a home of their own and a job (with supports) that they can be proud of.
What more could a parent ask for their child?
Shared with: What Joy Is Mine,
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