Your child was diagnosed with Asperger’s? She’s on the Autism Spectrum? And you’re feeling overwhelmed? You’ve got this – even if it feels like the world is slipping through your fingers.
How can I dare say “you’ve got this” with confidence? Because I’ve been there – and I’m still there. Who am I? Who is our family? I’m glad you asked! My husband and I raised a daughter on the Autism Spectrum, with Asperger’s. Diagnosed well over a dozen years ago, she is now a young adult and thriving. We’ve seen so much. I don’t dare say “we’ve seen it all” as there’s always something new around each corner. Though, to be honest, we don’t have as many twists and turns as we did in the early days. Still, we’ve been there and we want to let you know you’re not alone in this journey.
Let’s talk parent to parent for a few moments, okay? (YouTube more your thing? I touch on this subject in this vlog: https://www.youtube.com/watch?v=Rf9PFD6W4Ns )
Was your child, your loved one, recently diagnosed with Asperger’s Syndrome?
We’ve been there. It’s normal to feel overwhelmed. The reasons for this are endless. Coming to grips with a diagnosis (any diagnosis, for that matter) is emotional. Even though neither of us was surprised by K’s Asperger’s Syndrome diagnosis, we still needed time to let it soak in. For mom, here, who rarely cries, tears flowed that day. Do you need time alone or with your partner to let the reality of your new family pathway sink in? Take it. It’s ok. It’s necessary. Just be sure to check back in. Ignoring the “rules” and realities of navigating and living in the world of autism comes with a high price. Trust me, you can’t afford that price. Take time and accept it. Then choose to move forward. Things are going to be okay.
Are you seeing others in your lives start to wilt like petals in the heat of summer?
We’ve lived this. This is another reality so many of us face. This rejection will sting; just don’t let it scar you. From this point forward there will be an endless stream of those who don’t, who won’t, “get Asperger’s,” but they are not your concern. Sure, they may be quite persuasive (or downright rude) in their own misguided mind, trying to convince you to reject your child’s truth. Don’t listen to them. Move on. There are so many of us who do understand. Seek us out. We may not be the easiest to find, but we’re here – and we’ve been there.
Are some individuals misdiagnosed? Of course! But if your child’s diagnosis is solid, have faith in that and move forward. Don’t let others tether you to their own ideals; use that energy to propel you to work even harder for your child.
Did your child have an outburst in public again? Or do something else that causes you to feel deflated inside?
We’ve been there. Like in the grocery store when our very young Aspie daughter told the cashier though tears she was having a very bad day. (…because mom would not buy everything she wanted, and she was sensory overloaded.) Do the best you can with the resources you have. Parenting is hard. Too many parents don’t bother these days, do they? Don’t be like them. Bother. Try. Our young adult often comments on the lack of social skills of those all around her, who have no excuse, who have no reason to struggle to understand all the nuances innate to so many. Nuances she works to comprehend with each and every human interaction. Remember, this is ongoing for them. Help them. Be there for them. Let them know you’re there, and you won’t judge. Model and guide. And love them in a way they understand you mean it.
And don’t forget; we all have bad days, too.
Do you worry your child will only grow “so much”? That they will never be able to live independently?
We’ve felt this. Heck, we still do! Back when she was younger we did something quite odd, too. When those fears arose, we let them rest on our tongues for a few moments – then buried our heads in the sand. Here’s what I mean. We knew there was a chance (a very solid one) our daughter may not grow into full independence. But we also knew she was capable of so much. Her intellect was excruciatingly high, but her day to day skills played in the opposite corner. What did we do? We pushed her to grow, sought out counsel, read, read and read some more. When high school started, we still had concerns. There remained a lot of ground to cover. When high school ended, those concerns melted away. Her growth during those four years was nothing short of astounding. That fall, she enrolled at one of the world’s elite universities.
Lesson to impart: Do not give up on your child.
Let us repeat: DO NOT GIVE UP ON YOUR CHILD.
This road is a long one. But it’s like the road to Hana in Maui, Hawaii. It’s narrow in spots, with careening cliffs and nerve-wracking curves that defy logic. Go slow or you’ll fall into trouble. But the end of the road offers bliss. Stick to the road. Stay in control. And, please, enjoy the views! Our kids really do grow up faster than we think they will. Yes, YMMV, but so what? Get in the car and drive. Trust the map, even if you can’t see what’s ahead. You’ll do just fine. And so will they.
Yes, it really is worth it. All of it.
We never questioned this. We love our daughter. We believed in her – and still do.
Yes, it is worth it. All the sacrifices of time, money, patience, loss of “friendships”, fancy trips and fancy meals out. Even the meltdowns and the outbursts. Trust me when I say the gains and unique experiences that only Asperger’s can bring are like stars the glimmer in the night’s sky; tiny jewels that sparkle and draw us somewhere beyond ourselves.
I’ve asked my Aspie what she thought about having Asperger’s. She told me, and ended by saying that she wouldn’t take it away. Being an Aspie is who she is, a part of her. Doesn’t that say it all?
Embrace your child, as she is. It really will be ok. In fact, if you let it, it will be awesome!
Someone shared this Walt Whitman quote recently, and it seems relevant: “We were together. I forget the rest.”
Yes, it’s hard, especially in those early days, months and years. We’ve been there. We’re getting ready to launch our Aspie. Strike that. She’s getting to launch herself into the working world. Instead of looking at and recalling the losses, we’re focused on the gains. And through it all, we were together. We work to forget the rest (the losses, the pain).
You’ve got this.
You are not alone.
There are so many of us who’ve walked many of the steps you’ll be taking. Reach out to us. We’ll help as we’re able. And don’t feel funny about it. But do know who to trust. Those rules, the “who to trust rules” change, too. But we believe in you, and your family. You’ll figure it out as you need to.
There are roads of gold, glitter and greatness ahead. (And in our daughter’s case, gallons upon gallons of nail polish, lipstick and music.) Let your child shine. Let it all happen. And, to the best of your abilities, choose to be together so that when your child reaches adulthood, you can sit back, remember all of the goodness, the greatness, and forget the rest.
Remember, this is your life, their life. Live it to the full. Live it with promise and hope. It’s going to be okay.
Julie
