Do you remember how we started this journey?
Mournful eyes, furtive glances, and furious scribbling on notepads marked the beginning of my diagnosis meeting in August of 2008. I had been to several screening appointments at offices in several locations, and I was starting to be very annoyed at the idea of another meeting. But this was supposed to be “THE” meeting. The one where they explained what happened to my happy bright boy. Here’s the beginning of the conversation:
THEM: “We’re sorry to report to you that your son’s diagnosis is autism.”
ME: (just barely resisting the urge to roll my eyes) “Duh! Now, what are we going to do about it?”
Seriously. That’s how the meeting started. I had decided and began operating on the assumption that Savion had autism back in February of that year. The loss of speech and eye contact seemed like obvious indicators to me. I had already taken his diet GF, started melatonin at night, and gotten started with a speech therapist. That’s as far as I could get without an official diagnosis. Were they seriously going to waste my time stating the obvious? I remember that day pretty clearly. My husband and I had one of our last fights before the complete dissolution of our marriage that morning. It included him explaining that we’d probably be getting evicted in 30 days or so. I had an 8-year-old son on summer vacation, a 6-month-old daughter who was permanently attached to my boob, and my formerly easygoing middle son, a few days shy of his 3rd birthday who was alternating between running laps around the room and banging toys on the floor. In retrospect I’m proud of the way I responded. I could have screamed the poor guy into oblivion since I was stressed way out, but I only gave him a short version of my trademark smart-alecky sarcasm. I don’t recommend that route to new parents on the spectrum, save your smart-alecky remarks for your blogs or precious mom’s night out events that will soon be beacons of hope on your journey. Here’s what I DO recommend to new parents on the spectrum:
- Fortify your stashes….of everything! Money, babysitters, comfort food, friends, etc. You’re going to be stressed way out for at least a little while, so make nice with everybody as much as possible for the next 48 hours.
- Hold a pity party…Invite friends, family, anybody you’ve been referred to, and everybody else you can think of. This should take the form of an actual gathering, blog posts, emails, IMs, phone calls, etc. You might be here for a while, so aren’t you glad you fortified your stashes first?! Your best friend should be hostess and should collect everyone’s opinions, suggestions, and referrals for you and your help squad to research later. You should be the only one in mourning at this party (ok maybe your spouse too)…everyone else is there to cheer you up, refocus your energy, and generally advocate for you and your spectrum kid.
- Get it together…once you finish reeling, dig through all the paperwork you’ve amassed and find your 100-day kit. http://www.autismspeaks.org/docs/family_services_docs/100_day_kit.pdf Now start and remember slow and steady wins the race. Keep great records or find someone who will do that for you. There are great sheets to show you how at the end of the 100-day kit.
- Go for glory…trust your gut when deciding what to try and not try. Your budget is going to be stretched to the max, your mind will wander often (especially if you’ve got typical kids too), and your disposition will range from super sunny on your hopeful days to uber ugly after sleepless nights and marathon meltdowns. Read about it, talk about it, and then make a choice. Don’t be afraid to be wrong because you will be….OFTEN! Hey, the suits and docs haven’t figured this thing out either, so you’re in good company.
Think back to all the hopes and dreams you had for your child while you were pregnant, just after giving birth, and right before diagnosis. They might change a little depending on your kids’ abilities, but guess what? They always do…for all parents! So shoot for the stars…I’ll spare you the cheesy quote to end this blog; go get busy being SuperMoms (and Dads)!