i spent some quality time with a friend recently who also has children on the autism spectrum. she had commented how disappointed she was in the support she has received from her family since TWO of her children were diagnosed. she said, “If my child had cancer, they would all be here, rallying to raise money and do anything and everything to help. But I call to ask for one night of babysitting, because I feel at the very end of my rope, and they can’t be bothered to change their schedule.”

So I thought about this a lot. I finally did a little internet research (thank you, google) and here is what I came up with: The average cost of treating a child with cancer is $450,000 to $500,000. That is if the child responds to treatment within the first year or so. Autism has a lifetime cost of about $3.2 million for one child. ONE CHILD.

granted, cancer is not normally a life-long battle. it is nasty stuff, for sure. and i don’t wish it on anyone at all. nor do i think it is fair to compare cancer to autism. but it is interesting, don’t you think? also, please note: my ‘research’ would be thrown out of any real study for lack of supporting evidence. i mean, i just googled! but still… those are the amounts i found. so if they are even slightly accurate….

when a child has cancer, the community rallies. there are fund-raisers. there are car washes. friends bring dinners to the house to help the family worry less about such things. people offer to give the parents respite. all kinds of love, help and support pours in.

when a child is diagnosed with autism, things are not always so…. gosh, what do i say…. positive? parents get a lot of ‘Oh, I am so sorry.” but there is rarely an offer of, “can i do something to help?” maybe it’s a fear reaction…. fear of the unknown? fear of that child who acts like an animal? because WHO on earth wants to deal with THAT child? i mean, the autistic child’s parents HAVE to… right? they might think, “but if i offer to help, they might want me to interact with him/her. ” ok, maybe it’s not that harsh of a reaction, but it can be close.

when Mia was diagnosed, we got sympathy and some encouragement. but that was about it from the majority of people. and when we went in public, we were often harshly judged by her behavior (control your BRAT!) because, to look at her, she was (is) beautiful! she wasn’t running around with no hair or a chemo cap. she did not wear a hospital gown or bracelet. she did not have to use oxygen or wear a pic line. she appeared normal.  her behavior, however, was not normal. she was just lying on the ground, screaming and kicking… taking tantrums at very inappropriate times. she would grab, bite, hit… things that GOOD kids don’t do, right? ***sigh***

I am very blessed that my parents have been beyond loving and supportive since Mia’s diagnosis. My parents have stepped in and done it all for us… they have driven her to social skills groups; they have taken her to therapies; they have researched and read every piece of material they can find on autism. my mother has mastered the art of gfcf cooking. my dad is always on the lookout for ways to motivate mia to exercise. my parents don’t ever have a “woe is us” attitude about mia or her diagnosis. and they are very aware of the toll that it takes on me, as the mom.  they don’t mind taking mia to give me time off.  actually, they are always willing to take any of the girls. i am blessed beyond measure.

i once got a very hurtful email from someone that i thought loved and cared about me. in that email, this person was very angry with me, because they felt that my parents were being subjected to undo stress, wear and tear, and therefor, aging, because of my kids. being the person that i am, i shared this with my mom. her reaction? “Give me a break! Like I would do anything I didn’t want to do! Your children are NOT wearing us down! They lift us up!” i love my mom 😀

back to  my friend, and the many, many others like her. their families are missing out by NOT offering help. here is a fact: if someone has a child, or children, on the autism spectrum, they need help. they are not going to ask for it, or admit it, but they need it. as their family, you need to step up and help! it can be simple. pick up groceries once.  run things back to the library. offer to pay (or don’t offer, just PAY!) the phone bill for a month. place an online order of gfcf food. or take the NT (neuro-typical) kids for a bit so they (the non-autistic kids) get a break from autism, too.

i am blessed that all three of my girls are generally PHYSICALLY healthy. they also have really good health insurance, thanks to pennsylvania’s CHIP program. unfortunately, autism is very expensive. and it’s not expensive in the ‘traditional medical’ way. mia’s food… her treatments by the chiropractor, nutritionist or massage therapist, even just getting her the appropriate comfort objects and therapies. it costs an insane amount of money. i often wonder why God chose me…. someone who does not make much money… to advocate for her. no, actually, that’s a lie. i once wondered. i don’t wonder any more. i think i know why He chose me. He knows that i will do anything and everything for her, no matter what the cost, even if it means i eat ramen noodles for dinner every night. even if it means i have huge holes in my undies and have not gone to the dentist for myself in 4 years. even if it means i can’t get contacts and have to wear the glasses i hate. God knows that i have the heart to put Mia first. thank you, God, for trusting me so much.  thank you. i am the one who is blessed.

i don’t know what else to say… except this. if you know a family that has a child, or children, on the autism spectrum, PLEASE offer help. it does not have to be huge, but just offer. we don’t ask, because we are used to doing… but we need help. we need a lot of help.

and to those of you who have been here for me through this wild ride, i thank you. i could never have done it without you. mia would not be the amazing kid that she is if it were not for the love and support we have received.

and one more time… thank you to the very best parents, and grandparents, ever.  mia and i love you both more than you will ever know. thank you.