Parents: Who Supports Us?

“Nobody told me there’d be days like these

Nobody told me there’d be days like these

Strange days indeed”

John Lennon

So you’re the parent of a child with Autism, Sensory Processing Disorder, Pervasive Developmental Disorder, or learning disability. When was the last time you gave yourself a break? Acknowledged your courage and persistence? Applauded your patience, kindness, and compassion? Admired your own strength?

If you’re anything like me, I can easily gravitate to the space in my head that flits between judgment and criticism for my parenting mistakes and frustration and exhaustion from all the energy and extra steps required to raise a child with special needs. Especially for a single parent with no family nearby! Oh, I also reside in gratitude and wonder with the gift I have been given; the charge of creating a supportive, loving environment that will allow my children to thrive.

It is good to be grateful and to focus on the positive. I do myself a great disservice, though,  if I don’t name and honor the spectrum of feelings surrounding my situation. (spectrum, did you catch that?) :)

To quote an eBook I recently devoured, The Happy Child Guide: “As parents, many of us are faced with conditions of exhaustion, loneliness and stress. We are
usually the first to be blamed for our child’s faults, and seldom acknowledged for the good.”

I replay the many times I’ve disciplined my son when he was only trying to ease sensory issues within his body and I cringe. I think about all the times I lost my patience with his failure to follow directions when he truly didn’t understand what was being asked of him. Or the times I (sometimes still) am simply exhausted from trying to do it all and I yell. I yell.

We are doing the best we can. Parents, it is OK. Don’t put those scenes on repeat playback. Don’t cringe. Forgive yourself and move forward.

What about the guilt? Do you ever grieve? Do you ever wish the road wasn’t this rocky? Do you ever look at children behaving in a restaurant and suddenly find yourself beating down that little green monster, thinking, “why can’t I have that?” What about vacations? Flying? Going to the movies? Festivals? Do you ever feel deprived or robbed of experiences that at the moment seem impossible for your family? How about the frustration of all the IEP meetings and discussions with the schools?

Honor and release ALL your emotions

It’s OK. It doesn’t mean you love your child any less. It doesn’t mean

you are not grateful. It doesn’t mean you are selfish. It doesn’t even mean you wish things were different. We’re human. If we don’t allow these emotions to come to the surface and honor them, we cannot release them. They will fester.

I spend a great deal of time researching and talking about the right kinds of support for our children. Tools, resources, therapies… and I am glad to be able to bring you these things. But I forget perhaps the most important piece of the puzzle. If our bank is empty we having nothing left to give to them. We need support, too.

I would love to hear some of the things you do to honor, celebrate, and support yourself as a parent. And I would personally like to applaud you in your journey. Congratulations. Thank you for being you.

An Older Sister’s View

Ever wonder what it’s like to be an older sister or brother of an Autistic child? Here is one informative viewpoint, provided by my daughter Dorian.

Debi: Dorian, many of us know that having a little brother in general can be frustrating at times! But what kind of unique challenges come into play with Autism?

Dorian: There are a lot of challenges when dealing with an Autistic sibling. For instance, he screams a lot. And many times we can’t go out to restaurants or stores if he’s acting up; or we end up having to leave before we’re done. And, another thing, he’s obsessed with Super Mario Brothers characters. He talks NONSTOP about them. Talk about a headache.

Debi: Sounds like it can get taxing at times! What about some of the positive things about your brother?

Dorian: There are also some good things. For instance, he remembers street names or names of people when I can’t. He’s really good with details. So that comes in handy. Also, with me being terrified of spiders (especially the giant ones), he’s always up to killing one for me. He likes jobs.

Debi: What kinds of things about Autism do you think make it really hard for Justin?

Dorian: Certain things are hard to understand about him. He screams because he hears things REALLY loud. And when he hits, kicks, and punches me, he doesn’t mean to, which I don’t always understand but try to…

Debi: Yes, it’s definitely hard to understand what his world is like sometimes! What types of things do you think you do well, or find easy when dealing with him?

Dorian: What I find easiest is, when he’s bothering me, I tell him to do another task. I even used to tell him to go find the basement, when we had no basement. That would keep him busy for a while. Another thing that works, I give him a math problem.  I also tell him to race me to somewhere if I can’t get him to get up and move. Those work best for me, at least.

Debi: Those are good ideas. I know this is a hard question, but in what ways do you think you could do a little better with your brother?

Dorian: I realize that I could kinda back down on losing my patience quickly… though that’s easier said than done. And I get that he doesn’t do most things on purpose, although some with some things the case is he’s just being an annoying little brother.

Debi: Great! Do you have any advice for other older siblings that you could share?

Dorian: Here’s my advice: Instead of yelling all the time, take a minute and think about what will help. And, don’t always expect them to act out. Sometimes when you raise your expectation and see someone in a better light they start to act that way. It’s weird how that happens.