Disclaimer: Before I go any further, I’d like to say that I am fully cognizant of how lucky we are. I know that so many others don’t hang out in the shallow end of the autism pool, and that they’re literally drowning under the strain and responsibility that comes from having a child struggle so much. I’m not drawing comparisons between who has things worse, or better. We’re all in the same pool; we just have different concerns and struggles. I’m writing about the struggles that our family faces, and they in no way negate those of anyone else.
We represent an ever-growing segment of families affected by ASD – those who have a very high-functioning child, who will probably go on to do many things that their “typical” peers do and for whom life may be challenging, but not necessarily any more challenging than those around them.
And as members of that segment, we face very different – but very real – challenges. I remember when O was diagnosed. His good doctor (not the witch who told us he’d never say “I love you”) told us that O would “most likely walk enough like a duck to be lumped in with the ducks, but still need to be treated like a goose as well.” Our struggle, he said, would be to make sure that he was able to be both a goose and a duck at appropriate times. We talked about things like inclusion, aides, therapy, etc.
Fast forward a year, and we’ve just removed two huge sources of allergens from O’s diet – wheat and dairy. I cannot tell you the difference this has made. If I weren’t so vehemently opposed to the entire concept of DAN!, I might actually take O to one for supplements. However, I no more want to “defeat” a part of my child that makes him who he is than I would want to “delete” my daughter’s huge sense of humor and massive diva tendencies.
Sometimes, I’d like to stifle them both temporarily, but not nix them outright.
We’ve heard more language in the last four weeks, and seen more desire to initiate activity with others, than we’ve seen in nearly four years of life. Our goose is seeming more like a duck. And while, in the words of a friend, I don’t look at O and see him as “typical,” per se, I fear merging the worlds of geese and other feathered friends.
See, in my head, I can get him help if he looks more like a goose. As he approaches some semblance of duckery, the lines become blurred, and a school district facing budget cuts could look at my gosling and determine that he was ducky enough, thank you very much. At least he could keep up with the other ducks academically. Therefore, why spend the money on him when other geese need it so much more?
And this is a struggle that we at the shallow end face. How do we get them what they need when the lines can often, with intense intervention and lots of work, become blurred?
I called a friend today and blurted out, “Hey I need you to talk me off the ledge.” She listened, and she helped, but I still felt like there was a literal monkey on my back. I got the kids fed, and marveled as O filled his own water cup (without spilling!) from the fridge dispenser.
But the weight was still there. It was in my throat, on my shoulders. It was forcing out the air as I gulped it in. I grabbed onto the kitchen counter with both hands and gripped it until my knuckles were as white as the Formica.
The old refrain started in my head. How can I save him? How can I fix this? How can I plan for this now so when it comes, I’m ready? Patterns and habits die hard, you see; I am not completely a duck, myself, in many ways.
I stepped away from the kitchen counter and walked into my room; I shut my door, and knelt by my bedside. The words came pouring out of me so quickly.
Please, God, help me help him. Please, God, help me not waste my time with worry. Please, God, save him. Help me save him. Show me how to save him.
And suddenly, the curtains were pulled from my mind, and I saw clearly.
The answer is faith.
I have faith in God, to an extent. Let me clarify this – I tend to have faith that after I’ve driven myself quite batty in the process of taking care of whatever needs doing, that God will probably step in and throw me a theological bone.
Possibly. Maybe. Probably more likely if I didn’t cuss so much.
But in this situation? Totally faithless. I was asking God to help me do all the work, without trusting that perhaps He can do it all on His own, thankyouverymuch. I wanted Him to do it my way. As realization set it, new ideas emerged. Perhaps I am supposed to just love my son and trust. Just be with him now, and worry about the rest in time. Because here’s the kicker.
God made O to serve His purpose. And if He provides for my family (and he always has, and has never let us down), surely he will provide for O to get the help he needs to serve His purpose.
His purpose. Not mine. Not my will, but thine be done.
It’s a refrain I come back to – those of us raising special children face at diagnosis (or birth, depending) – a similar struggle to parents whose children show up with purple hair/ tattoos/ Bibles at some point in their teenage years. You know, something really shocking. We realize that our definitions of “normal” and “happy” may not apply to our kids – they may not be the definitions that exist for themselves.
What works for this duck may not work for her goose.
And that’s ok.
But I realized today, as the curtains were pulled off of my eyes and I saw the truth as clear as could be – God wants me to rely on Him. And that doesn’t mean sit around and do nothing to help O. But it does mean allowing God to show me the way, rather than forcing it myself. And trusting that He does have a way, and will help us achieve it for O, and with O.
And so I apologized. I told God I was sorry for my lack of faith, and for my fear, and for not cherishing my boy just as he was today. And I saw clearly, for the first time in a while. The beauty of my situation. The talents of both of my children. And the absolute gift from God that they were.
And it didn’t matter that one was a goose and one was a duck – they were both my sweet little babies, each with a perfect spot in our pond. And I have to have faith that God will provide what they need in order to serve Him, and as that happens, it’ll be perfect.