The post below is by Lisa Smith, the mother of seven children, two with special needs. Her son Tate has autism. Lisa blogs about her experiences and can be found on Facebook at Quirks and Chaos or here.
1. Parenting a special needs kid does not make you super hero. I seem to have given some of you the wrong impression. I am not supermom, not even close. I rarely cook anymore. I don’t spend enough one-on-one time with any of the kids. I lose my patience and raise my voice occasionally. I feel really successful on the days I keep the laundry done, the house fairly clean, and the kids happy.
2. Parents of special needs kids have a lot of insecurities. Sometimes I don’t know what to do. I’m winging it here. Oh, I’ve tried to read all the right books and surround myself with people who can advise me about my kids’ disabilities but I’m the one who makes the ultimate decisions and sometimes I do not know what the right decisions are.
3. (In spite of #2) Parents of special needs kids are experts… on their own kids. I could never claim to be an expert on autism, but I do know Tate and Sydney really well. When a teacher or doctor tries to tell me what is best for my kids instead of asking me to collaborate about what is best for them, we will not make any progress. Parents of special needs kids want to be asked, not told, how to best interact with their child because WE are the experts.
4. Parents of special needs kids like to talk about their kids… a lot. Something seems to happen to women when they give birth. The number one topic of conversation is no longer clothing, hair products, recipes, or movies. The conversation now revolves around their child. Parents of special needs kids are no different. I cannot seem to help myself. I am sorry, friends.
5. Parenting special needs kids is sometimes lonely. I am lucky in that I got to do this five times with typically developing children. But in some ways that may make it a bit harder because I know all the things my special kids and I are missing out on.
6. Parenting special needs kids can be exhausting. Yeah, I know; all parents are tired. Remember I did this with five typically developing kids. I know the difference between being tired and being exhausted. It’s not just the physical rest that we sometimes give up. There is so much stress. A disability often taxes a family emotionally. Typically developing kids grow up. They learn to do things for themselves. They eventually leave home. Think about it. Now, are you really THAT tired? I’m really THAT tired. Really.
7. Many parents of special needs kids hope for the best but prepare for the worst. We know where all the exits are, carry a bag of emergency supplies, and have a plan B in place at all times. Hoping for the best and preparing for the worst also applies to the long-term as well. Parents of special needs kids have to have very flexible plans for their children’s future as adults. Many of these special kids will never “grow up.”
8. Special needs children are expensive. They require therapies, doctors, medications and schools that typically developing children do not. One of the things we hear a lot is, “You get help with all of that right?” I always want to laugh. Just who is supposed to be helping us? The federal government? The state? The insurance company? Who? We mortgage our homes. We take out loans. We work extra jobs. We do without things. We use our savings and our retirement accounts. Parents of special needs kids are often deep in debt.
9. Parents of special needs kids hurt when their kids hurt. Sometimes our kids have to do really hard things, academically, physically, or mentally. And we just have to watch, hands tied, while they struggle. Sometimes our kids’ pain, anxieties, and fears are incapacitating and there is nothing we can do to relieve them. Sometimes when I watch Tate pace, wringing his hands, or even breaking out in hives, because he is fearful of what lies ahead, I become physically ill myself.
10. Parents of special needs kids need encouragement, not pity. We are proud of our kids. We celebrate smaller milestones than you will for your kids but they are just as precious to us. We love our special kids just as much as you love your kids. We do not often feel sorry for ourselves. We are not ashamed. An encouraging word means so much to us, probably more than you will ever know.
11. (Similar to #10) Parents of special needs kids hear a lot of clichés. “Everything happens for a reason” and “God only gives special kids to special people” are two that I hear the most. Neither of these things is even true! I hate clichés. I’d rather hear, “I prayed for you today” or “Your kids are sure making great progress.”
12. Sometimes, once in a while, there are a few of us, not many mind you, but a few of us parents, who feel guilty. What if I had not taken that cough syrup or used all of those cleaning products while I was pregnant? What if we had started the early intervention sooner? What if we had tried harder and done more therapies? Sometimes we think about these kinds of things…. but mostly we don’t.
13. Sometimes parents with special needs kids are defensive. There are reasons for it. Some of us have had a few really bad past experiences with our kids’ peers, other parents, and teachers. We have learned from past incidents that not all children or adults are kind to us. Also, we know people are watching us, and our kids. We are different and we know it.
14. (Despite #13) Parents of special needs kids are approachable. We WANT to spread awareness about our child’s disability. Ask us your questions. We will answer them. We would much rather explain the how and why than have you guessing and misunderstanding. Don’t stare but come over and ask us what you want to know. Remember #4, we love to talk about our kids just like you do and we don’t bite. Our kids don’t either (usually.)
15. Parenting a special needs kid is rewarding, more so than anything I’ve ever done. The small things are often huge in our worlds. I had heard it before I had my own special kids: “He has taught me more than I could have possibly taught him.” I used to wonder what that could really mean, imagined that I might know; but I did not. I’m not sure anyone could understand without walking in the shoes we walk in. It’s life lessons we learn. It’s compassion, patience, joy, and empathy on a level that no one could have ever described to me before I became a parent to a special needs child.