Two years ago, this month: April…we walked from a developmental pediatrician’s office with numbers 299.00 on a script. The irony of April for Moose’s diagnosis isn’t lost on me: the month of autism awareness, autism action, parents screaming at each on facebook on who to blame, funding, finger pointing…
The moment I saw those number scribbled in haste on a prescription pad: your mind swirls with never’s, what-could-of’s, and why’s.
A dark cloud engulfs you.
It’s a scary, ugly, and shitty place to be.
A place I wouldn’t wish upon anyone.
You put on your boxing gloves, your armour, and start to kick and scream and fight and punch.
And finally, after two years and nearly $25,000 in credit card and medical debt {not a typo}- your son is starting to speak. Dress himself. Pee on the potty.
And that dark cloud, has lifted.
Sure there are many storms still on the horizon, but you are armed and have gone through the worst bootcamp imaginable in parenthood.
What breaks my soul, in the few years since we’ve been drafted into this world of autism: the numbers are drastically rising.
It’s not better diagnosis. It’s an epidemic. To call it anything but that is lunacy.
Are schools not noticing anti-social and nonverbal children? Really? It’s bunk.
We have a national crisis on our hands, and denial, as all autism parents know is the first step. I pray each day that I will one day have the funds to help families. But for now, I can just use my voice.
Despite the negatives, autism has given me a true schooling in life. It has taken my ego out of the equation. It has changed my life’s goals and mission. It has reinformed everything I took for granted.
1.) Autism has given me the ability to truly question everyone and everything. I have a compassionate heart, but a cynical eye. Autism has made me realize that our government doesn’t have our best interest at heart.
The almighty dollar prevails be it in the medical, food, or therapy industries. It’s best to proceed with caution, and research, research, research as much as you can. Ask who funds the study. Inquire about ingredients. Double-check and triple-check everything.
2.) When dealing with school and therapists: get it in writing. Talk is great, but all important correspondence needs to be in ink. Email is best. Read over your IEPs with fine-tooth comb, and if you don’t have an educational background, find an advocate.
3.) Food is crucial in helping children with autism, but beware of the slippery slope. We’ve tried many a diet to help Moose. We are still gluten-free. But the dietary portion of autism can border on fanatical. The more I’ve learned about diet and nutrition, the less I know for certain. Every food, even the beloved kale, has components in it that can be problematic for some individuals.
My take on it now, after three years into a full-blown diet? Avoid processed crap. Food coloring. Excessive sugar. Buy whole foods that are organic and non-GMO. Rotate your foods. Cook with love.
There are many paths to take with diet. Ours is still evolving, and I’m okay with that.
4.) Community is crucial. Finding other families in your situation is your life line, your oxygen mask. Even if it is just a group on facebook. Facebook has tons of amazing groups. Befriend other parents at your child’s school or clinics. You need people that “get you”. Find them. Even connecting with other special needs bloggers is a great way to find common ground and ideas.
5.) Fight for services. You wouldn’t want to meet me in a dark alley at this point. I’m barely 5 feet, but I will kick your insurance company’s ass.
It took YEARS for us to get ABA coverage, speech, and OT. We have tons of debt {that’s a whole other post that I will post this month}. If your insurance is still giving you the run around, enlist family for help. Throw yourself a fundraiser if you have to. Learn about the different methods of working with kids on the spectrum: ABA, RDI, SonRise, TEACCH. Read all you can. It’s all out there on the interwebs.
Same goes for the healing component: be it biomed, homeopathy, chiropractic care, Qigong massage, neurofeedback, etc. It’s overwhelming, but follow your gut and do your research.
No matter your stance. No matter your position on the causes of autism. The bottom line is: we all need help.
6.) Now that this list has exhausted you, RESPITE is crucial. Many states, {Illinois included} offer respite care for families with special needs. Find it. You have one of the hardest jobs on earth. It’s not selfish to do things you enjoy to recharge. In fact, I ran a whole series of “me time” posts on this site last year. One day a month, I did something for me without guilt. Come to think of it…I need to do that again.
Awareness is one thing. Action speaks louder than awareness.
I hope one day, in the not-so distant future, to be at the helm of a non-profit who gives more than 4% to family services.
These American families need help. Mine included…
With love,
Nicolette
That is powerful Nicolette! Keep going with your activism – you’ll never even know how many people you help.
Hello, quick question, you mentioned it took years to get coverage for ABA, speech and OT. I’m not sure how old your son is but is he not receiving these services through the school district? Or is your son receiving these services outside of school as well. I’m a new autism mom and my 3 year old son just got accepted into the PPCD program through the school district. I’m not sure if I should seek private services as well.
He does receive some school-based OT/ST/PT, but that being said, those services are paltry at best, and not nearly enough. We receive 20 hours of home-based ABA and a co-treated session of OT/ST. Please look into services beyond what your school district offers…the services at schools are not enough.
My best,
Nic