When my youngest son was diagnosed with autism eleven years ago, I knew almost nothing about parenting a child with special needs. Within months of his diagnosis, we adopted another child with a disability. I’ve learned a lot along the way, and I would like to share some of those truths with you.
1. Parenting a special needs kid does not make you a superhero. Not even close. I lose my patience and raise my voice occasionally. My house is not always clean and sometimes they have cereal for dinner.
2. Parents of special needs kids have a lot of insecurities. Sometimes I don’t know what to do. 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, or any other disorder, but I do know my kids really well. When a teacher or doctor who has spent a short amount of time with my child wants to give me advice instead of collaborate, it is insulting.
4. Parents of special needs kids are no different than other parents. We all like to talk about our kids. However, we probably talk about different things. Parents of special needs kids tend to flock together and talk about our kids’ disabilities and therapies and their school situations. We use a lot of acronyms like IEP, ESY, and ADHD.
5. Parenting special needs kids is sometimes lonely. We are missing out on a lot of things that you take for granted.
6. Parenting special needs kids can be exhausting. Yeah, I know; all parents are tired. 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. Many of our kids won’t.
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. There are these things called meltdowns. They may look like temper tantrums to you, but they are not comparable at all. Meltdowns are not usually triggered by anger but come from anxiety or sensory issues. Meltdowns can ruin a gathering. Hoping for the best and preparing for the worst applies to the long term as well. Parents of special needs kids have to have very flexible plans for their children’s futures as adults.
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?” Just who is supposed to be helping us? Who? We mortgage our homes, take out loans, work extra jobs. 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 watch while they struggle. Sometimes our kids’ pain, anxieties, and fears are incapacitating and there is nothing we can do to relieve them. Sometimes while I watch 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 do not often feel sorry for ourselves. We are not ashamed. An encouraging word means so much to us.
11. 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 of those. Neither of these things is true! If everything happens for a reason then children are abused for reasons. Cancer has a purpose.
12. Sometimes, once in a while, there are a few of us parents—not many, mind you, but a few of us—who feel guilty. Did I do something to cause my child’s disability? 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. Some of us have had really bad past experiences with our kids’ peers, other parents, or teachers. We have learned from past incidents that not all children or adults are kind to us.
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. The things we learn from our kids and their struggles could never be taught using any other method. 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.
Related post: Dear Newly Inducted Special Needs Parent