Patty Knap calls herself a “born again” Catholic. She planned to be a wife and mother of four or five kids with several girls, but as life played out, she’s a single mom with two young adult boys. She counsels at a crisis pregnancy center, teaches CCD, takes online classes with the Avila Institute, and loves the beach, dalmatians, and America’s national parks. She also saves recipes in a pile until it gets big and then throws them out.
I can hear my mother now. "Patience, Patty, patience!" It never came naturally for me, that's for sure.
Like many people, I wanted the assurance of knowing what came next. Wouldn't it be nice to have a set schedule … for tomorrow, next week, next month, all year, and sure — our whole lives!
But life rarely presents itself in a predictable series of steps, proceeding one after the other without interruption, does it?
You have a child you pour your heart and soul into. When that child is typical, you expect certain milestones, gradual maturity, one foot after the other. You plan and you pray, and you worry, as you see the progress of a little child developing self control, manners, character, faith. You have assumptions: If he sees good behavior, he'll learn it. He'll pick up social skills, manners, organization, concern for others, self control, and all the other marks of good judgment we expect in young adult. You will keep him safe, you'll keep him healthy. Everything will move along as it should.
For parents with a child on the autism spectrum, and other diagnoses that come with a wide range of behaviors, parents often start off with the same assumptions, only to realize early on they have to change their assumptions.
If there's one thing I've learned as the mom of a special needs son, it's "assume nothing!"
I battled with wanting to control the situation for a long time. So many behaviors, so little control. Why can't my child look at people when they talk to him? I've told him a thousand times; other people remind him; he sees how other people make eye contact when they talk to each other. Why is he either refusing to master, or is incapable of mastering this?
His nighttime rocking routine drove me crazy. Hours of extremely intense rocking — the floor vibrates in the next room — along with a loud moaning sound were stressful to deal with, and he'd wake up with matted hair that took time and patience to tame every morning. Having spent his first four years in an orphanage, 'self-soothing' behaviors were expected. But I assumed — there's that word again — that with time, love, stability, he'd grow out of it.
Some things did improve, but the rocking persists. And the impulsivity. Random strange choices like suddenly scraping the side of the car with a metal rake. Burying canned food around the back yard. Writing in huge letters his name, address, phone number, and some doodles across four squares of wet cement in front of a neighbors house while walking the dog, and then just happily continuing on his way. You can't make this stuff up, and you also can't anticipate it, so I was constantly on guard for what would happen next.
Some of these incidents threw me into a tizzy. This doesn't make sense, I'd think. I'm raising him exactly the same way I raised my older (typical) son, but nothing's working! He's not getting some basic stuff! I poured myself into every conceivable type of therapy and intervention suggested to me or that I found through research. I went to dozens of mainstream doctors — several of whom contradicted each other or gave exasperatingly obvious suggestions (For a 9-year-old who still wore diapers at night I got this expert urological opinion: "Just stop giving him drinks after 4pm." Did they really think I hadn’t already tried that?) I even tried alternative treatments — sensory gym, chelation, biofeedback, and so on.
I wasn't prepared for a special needs son. I didn't "expect" a special needs son. I was obsessing about him always needing help, not being able to work, not marrying. And I was spending too much time trying to change the unchangeable.
It was exhausting. And most of it had no effect whatsoever. I was trying to my force my child to become something he could not be: typical. Gradually I had to learn that, along with my son's gifts, he has many challenges, and some of them are permanent. After years of impatience with myself (I just must not be doing something right, I'm just not teaching him in the way his mind needs to learn things, I just haven't found the right combination of meds/therapies/behavior modifications, etc.) as well as impatience with him for not being who I wanted him to be, I changed my prayer. It went from desperately wanting a typical child to praying for my response to him, and for patience and calmness when the difficult behaviors come. And to help him on the path God's had for him all along.
One thing that's helped me is continually reminding myself that NO parent has a direct path to adulthood without a few obstacles they didn't plan for. Some are much more devastating than the realization that my son will probably always require some assistance. A young man in my community had a diving accident and is now in a wheelchair. The son of a co-worker is a drug addict, and nothing's helped so far. A friend's younger brother is a severe alcoholic. Another young person in my area was recently diagnosed with advanced cancer. These may all be 'typical' young adults, but their situations aren't ideal.
Another thing I've had to drill into my head is that some of my child's difficult behaviors that I often feel impatient with aren't difficult at all for him. I mean, it's not bothering him that he rocks a good part of the night, or that he often moves too fast and sometimes breaks things in the process. He's generally happy, he knows he's loved, he wants to please but some things are just beyond his capability. I've learned to stop looking to change things that aren't bothering him and aren't a major problem for anyone else, and to just accept this fascinating person God has given me to take care. My prayer now is simply to help him on the path God's had for him all along.