Living Life on Spectrum

I've seen some parents posting recently about walking through diagnosing whether their kids are on the autism spectrum. Until May 2013 there were some discreet disorders, like Asperger's, that could be diagnosed. With the advent of the DSM-5 (the tool used to diagnose mental disorders) everything was rolled into one and now we have Autism Spectrum Disorder (ASD). Having walked through this journey myself (as a single parent, no less), I wanted to share some of what I've learned. This isn't exhaustive, and I could probably write for days, but if my experience encourages even one other person, then God has used it well.

Lessons learned hanging out on spectrum

• I am not a failure. Even though I took horrible physical care of myself during pregnancy (there were a lot of variables, including being single long before being divorced), my son's ASD does not mean I'm a failure. It could have happened even if I was awesomely healthy and did everything "right." Even if I failed in how I handled pregnancy, I am not a failure. There is a big distinction here and super important.

• Allow yourself to grieve when you get the diagnosis. We all have hopes and dreams for our kids. When those change, we experience loss. That's okay. You can feel those things. Allow them. Where it goes unhealthy is when you can't let them go and realize that God has another plan. So, allow yourself to feel and grieve. And then let God walk you through healing and into a journey He has for you - for His glory and for your (and your child's) good. 

• It's frigging hard to raise a kid on spectrum. This isn't an easy road, and that's okay. I can't tell you how many tears I've cried and how many prayers I've prayed. What I finally learned to pray, "God, I don't need easy. I need possible. Please get me to possible. I'm okay with hard. I'm okay with really hard. I just need possible." He's faithful. I have possible most of the time. Not easy, but possible.

• 90% of techniques you try will fail. 10% will work. Be really happy with the 10%. I'm pretty sure that most parents actually experience this with kids. We're dealing with a person here. A person we're trying to raise who has a personality of his/her own. In a sinful world we attempt this! For us with kids on spectrum it seems magnified because easy isn't really how it ever works for us. But if we concentrate on the 90%, we'll lose way too much joy, we'll miss God working, and we'll teach our children the way wrong focus.

• Ask for help, look for help, keep asking, and keep looking. Even married couples who have two sets of hands and temperaments and patience levels to assist need help. You need community. We all do - even if our kid isn't on spectrum! Failure to ask for and accept help is pride. I struggled mercilessly with this. I functioned on a "nice to have" versus "need to have" paradigm - if I didn't think something was absolutely necessary I wouldn't ask. Even with the needs I would wait until I was at my wit's end or had tried everything I knew to do. I completely kept people from loving me. And that, friends, is not cool. I am not able to do this by myself - neither are you. God never intended life to be done solo no matter what your situation! I have a great and supportive group of friends and family that I've educated on stuff. We have a cadre of therapists. I was going mad before I asked for help. Really. 

• Do not treat your kids like they have a disability. Look, we all have crap. I struggle with my weight and with food. My son struggles with social stuff, cognition, fine motor, and all that jazz. So what? We live in a fallen world. At least he knows his crap and it has a name. We do not refer to him as being and "Aspie." He has ASD, he is not ASD. Yes, there are needed modifications. Yes, we have to walk this life differently. But he is not his disability. I hold him to a high standard. We modify where needed. We fight through the anxiety, we fight his endless worry with all we have. What this looks like for you will be determined by where your child lands on spectrum. All I can say is don't give up and fight with all you have for your child. They are precious, not only to you, but to our God. 

• Be your child's advocate. Get educated. You need to know the law and what schools have to provide. Some parents homeschool. I can't do that since I'm the sole breadwinner. I fight hard to ensure he gets the appropriate modifications. Organizations like The Autism Society are really helpful. Not only will you learn how to help your kiddo, you'll meet other parents in the same boat, and you'll have tools you can use when you need them. 

• You have an opportunity to cling to Jesus. I've learned more about God and been more matured by Him in the last 9 years than I ever thought possible. Yes, folks with kiddos not on spectrum also can cling to Jesus for many other reasons and I'm not minimizing that. I can say for me that having a child with ASD has been my impetus to hold on tight and cry out lots. And my son sees that - I live what I believe. I don't pretend to always know why. I just know that God is good, and He cares about my feelings. I can hold on to Him and know that everything is for His glory and for my good. For my kiddo's good, too!!! 

Again, this isn't exhaustive and there are way too many details that if I shared would leave us here FOREVER. And ever. And ever. I hope this helps or blesses someone. This isn't an easy road (really, life isn't an easy road and parenting isn't either, no matter what the situation), but it's possible. 

God makes all things possible. And God makes all things beautiful - He brings beauty from ashes.