If I could set the agenda for Autism Awareness Month, here’s what I’d love to see happen.
April 1st kicks off Autism Awareness month and I have mixed feelings each year.
I’m thankful for friends who wear blue and send their love to our family via social media and texts. I’m thankful for the extra attention autism gets on websites and news shows. I love making new friends at local autism awareness events and by clicking on hashtags.
But even with all this awareness, I still feel like we have so far to go. Here are 5 gifts I hope to receive this April that will make our autism journey a little easier:
Services – We moved from PA to TX last fall and I had no idea how different each state is when it comes to services for autism. In PA, James’s medical and therapy needs were covered by insurance, and his class at school focused on ABA, which is exactly what he needs to learn and thrive. Here in TX, his medical and therapy needs aren’t covered and we have no options for ABA (no options that wouldn’t cost us thousands of dollars). My home state of Oklahoma is in the process of changing their insurance laws to include autism coverage. If it doesn’t pass, the best option for autism families is to move to one of the other 43 states that do require coverage (although that coverage varies greatly). My dream would be consistent coverage and opportunities for families no matter where they live.
Compassion – I wrote a few weeks ago about phrases special-needs siblings need to hear, but there are phrases special-needs parents love to hear too. Like, “You’re doing a great job,” “Is there anything I can do to help?” and anything positive people say about our kids, like “James had so much fun doing ____ in Sunday school today” or “I love to hear James laugh!” Compassion is different from pity. We don’t want to hear, “I could never do what you do” because the truth is you could do it if that’s what you were called to do, just like we do. True friends and real encouragement are such gifts!
Inclusion – This is a tough one for us because James doesn’t usually have any interest in playing with peers. But when a parent encourages her child to sit next to James and do a little parallel play? I can’t stop smiling. I know inclusion looks different for each child on the spectrum, but where ever you land today, I hope someone gives you the gift of making you and your child feel like you belong and are welcome.
Time – Time to relax (An autism parent is always on. Our stress levels can be the same as a soldier in an active combat zone). Time to focus on their typical kids. Time for a date night. Time without Thomas the Train on in the background. If you have a friend who has a child with autism, maybe you could offer her the gift of time? Or if you attend a church with a special-needs ministry team, maybe you could organize a respite night so lots of couples have some time together? Many autism parents are in this for the long-haul may never be empty-nesters. The gift of time now can help them be happier and healthier.
Trust – The autism journey isn’t easy and we’re all doing the best we can. I wish people would see that and trust me and my decisions. Just last weekend at the grocery store my husband Lee could have benefited from a little trust from the lady restocking shelves: “Sir, I don’t think you should have gotten your son up so early to come to the grocery store. Trying to beat the crowd?” “Well ma’am, he woke me up.” “Oh goodness! Well I still wouldn’t have gotten him out so early.” “Ma’am, I’m trying to let everyone else at home sleep!” Trust me, if he would let us sleep and not beg to go to the grocery store at 6:00 am, that’s exactly what we’d be doing.
Chick fil A chicken nuggets for life – We are dreaming here, right? Chick fil A nuggets are the only meat James eats without a fight, so a life-time supply of them sure would be nice!