Why Do Autism Parents Spread So Much Awareness!?

Welcome to my crazy house blog, If you don’t know me already; I am Tammy and these are my stories of how I survive being a mom with ADHD, raising teens with additional needs as well as things I have researched myself along the way to benefit our crazy lives we live every day!

Yes, I am one of those parents that raise autism and ADHD awareness every single day. Being a mom to children with any disability or any additional needs is challenging in every way imaginable but being an Autism parent really is like no other. Autism Families have formed their own community and line of support but still, need and want a sense of belonging in the general community. They want to make birthday parties with the coolest loot bags and bouncy castles too!!

We raise our children with their invisible abilities that others find hard to see and often don’t believe it’s anything more than “bad” behaviour and “lazy” parenting. Some even think that we just want to collect a disability paycheck for our kids. That we ask for so much funding even though in reality the therapy, the test, the travel, the special diets, the sensory toys, cost a lot of money. Yes in Canada we have “free” health care but not if you are on the autism spectrum and require special services just to get through another day fitting into society. Specialized testing and many medications are also not covered and can cost thousands per year on top of average child care costs.

Often, no one offers us the helping hand we need, maybe because they think their unsolicited advice is enough, maybe they don’t know how to help, maybe they believe not understanding is easier than understanding. Maybe they think because we are often stay-at-home moms this is the life we choose. Maybe we appear strong and organized so what more do we need? Whatever the reason we still want to be thought of. Yes, we may turn down your pot luck dinner, but the idea that we were invited could brighten up our whole week. We may not get a sitter but raking up the leaves for us is a huge help.

The difference between raising a typical child to a child on the autism spectrum is about our goals, our family structure, our social life, and our home more than likely look a LOT different than yours. It may be a little crazy, somewhat organized chaos, piles of laundry, but it also has a whole bunch of love and acceptance.

Parenting is a lifestyle change for anyone, your home quickly fills up with the coolest toys and newest gadgets. You rock that soccer mom outfit with the perfect messy bun and a tad of eye shadow. You dress up your littles with the most adorable outfits and take tons of photos. You mark each milestone in their books and keep strands of their first haircut. You look forward to the next parent-teacher meeting to catch up on the latest community gossip.

Parenting autism is a huge lifestyle change. Our books are tracking foods eaten, sleeping hours, “behaviors” and pics of their first fully clothed day, pic of the first cookie they ate, and so on. We have a list of doctors, therapists, social workers, caseworkers, lawyers, and plumbers!!! As a new Autism parent, you try so hard to keep up with the other parents because you long for that sense of belonging. But you fail, parents don’t accept your child to playdates or invite your child to birthday parties. You second guess every item you buy and think if this will trigger a sensory overload, easily break, or be used as a weapon. You lock up everything that could become a weapon, you can’t remember the last time you took a shower, you’re just lucky you found the comb to straighten out your rat nest. You search high and low for outfits with no seams, not too fuzzy, not scratchy, no circles, snaps instead of buttons, and if it can be worn backwards or be modified in one way or another. You hide your tears when your little doesn’t meet their milestones, and celebrate the ones that other parents take for granted like saying a swear word to a teacher just because it was the first word someone besides you understood!

Just getting a haircut, you must search for the perfect person with an abundance of patients and quick with the scissors, in the most sensory-friendly hair salon you can find, to cut your littles hair as they squirm stim maybe even scream on your lap and eventually end up on the floor. even if it’s over an hour’s drive to get there.

You dread the parent-teacher meeting so you try to sneak in early so no one is waiting, with your laundry list of questions, with the hope the teacher has something positive to say even though you know the next IEP meeting is coming up soon.

Parents look forward to the one-year check-up with the pediatrician to see how much their little has grown. They are confident because their little ones have an iPhone with games to play while the parents chat about their next holiday with fellow parents in the waiting room. Autism parents need to prepare for the appointments weeks ahead of time. Prepare an organized binder filled with assessments, suggestions, medications, therapy, and more! Then plan for breaks while they wait with snacks, fidgets, tablet and charger, PECS, social stories and hope they don’t have to wait too long.

By raising awareness we have a voice. That we are just parents like you who are trying their best in a world filled with the unknown and would really appreciate a smile and maybe let us skip you in line when you see a meltdown brewing and know that we appreciate it more than we can say because 100% of our focus is on our children.

Thank you for raising awareness and acceptance!!

If you are an Autism parent or caregiver please know I see you, and you are doing an absolutely fabulous job. Be you and be proud you are working hard on what matters most, your family!

Autism Ontario Canada

Autism Program for Ontario Canada

Autism Awareness Center USA

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