"The most important thing people did for me was to expose me to new things." Temple Grandin
If you don't know who she is, Dr. Grandin is the OG autism advocate. "A Loving Push", as she describes it. So I have and I will continue to do so because I have seen the difference this has made in my son's life. We've had success and we've had utter clusterfucks. I'll still keeping pushing though because the good outcomes are worth it. If it's good enough for Temple, it's good enough for The Kiddo.
I guess what you mean is I'm suppose to listen to autistic people but only ones you agree with.
Today I was told that I should not talk about any co morbid issues that come with autism during autism awareness month. However, for the life of me I have yet to meet an autistic person that did not have any other co morbid issues or challenges. Not to mention, isn't the point of awareness to clue folks in that autism comes with other issues? If we don't talk about these challenges now, exactly when are we suppose to address these needs? I will talk about these challenges this month and I will talk about these issues always. If we don't talk about them, that's how the one sided stereotype of autism in the media and general knowledge will continue. Yeah, not on my watch.
So if you want to go around doing that, feel free. I'm not.
Today I was self involved to air my feelings publicly. Well Jeez Honey, any writer of a blog knows that already. You're not exactly telling me anything that I don't already know. Blogging, for the most part, is pretty self indulgent. I suspect you are concerned about "What if he read it one day?". Fair enough and here's my response to that. If my son can read this blog and understand it, all of it and get completely pissed off, I will sing "Amen and Hallelujah!". I will be absolutely thrilled that he was finally able to develop the comprehension needed to do so. It will mean years of therapy, education, medical intervention, blood, sweat, and more tears (Mostly my own.) than I can count actually worked. It will be validation that we actually made the right choices in his care and upbringing. It will mean he is an independent, free thinking, self reliant person who is able to take care of himself.
That's all this autism mom could even hope to happen. I will gladly pay for his future therapy bills and you can go about yelling "I told ya so." all you want. I'll be happy AF!
Today I was told my son wasn't autistic enough. I will add this to the times I have been told he simply too autistic to participate in activities and school environments. All these years I have been living this Team Quirky lifestyle with him and now I find out there are levels of autism. Well color me surprised! Is it like the difference between a Muggle and a Mudblood in the wizarding world? Cause this Harry Potter fan can totally follow that.
Is Autism SPECTRUM Disorder some sort of video game with different levels my Kiddo has to earn? Is there an app for that? Color me confused here but I thought the "Spectrum" part in the name meant there was more than one way to be with autism.
Today I was told by my son that he loves me and that is the only thing I ever worry about hearing. Feel free to keep telling me how I'm doing it wrong. I mean, that's how this self involved blogging thing works. I write. You comment. It's the circle of lifeeeeeeeeeee...
Today I am kind of glad it's the last day of Autism Awareness Month. Bet you are too since I just spent the past thirty days screwing it up. ;-)
Playing a little piano with the sheet music upside down. As you do.
I have found that whenever stuff becomes a 'thing'...then all of sudden these arbitrary rules/guidelines/expectations appear. Like who made this stuff up? Blogging is all about sharing your journey and your perspective. The audience (me) takes a look at the perspective, mulls it around, and decides what to keep in the ole brain. In day to day living, there is little room (or energy) for arrogance, indignation, and other big words. Keep on swimming!
ReplyDeleteEff 'em, I say!
ReplyDelete(Also, a big smoochy kiss to you!)
Mama Fry, keep writing as you have been and keep parenting your son as you have been. As I am also one who is so glad autism awareness is over since apparently we have done everything wrong on getting our son to where he is today after 23 years of sweat and tears.
ReplyDeleteAutism wins if we start choosing sides. Any one that has been blessed or cursed depending on the day with this journey, the worst thing we can do is start judging each other. I have days of great victories against Autism and I have low days where I pray for strength . But I am comforted with the thought many others lovingly and bravely take on this fight along with the great beautiful people we fight for. I say we support and share our hopes and concerns so we can take on the next day whatever it brings. Rant over
ReplyDeleteI get so annoyed (as I'm sure you all do) when someone with no experience or training tells me what I "should" be doing to raise my autistic child.
ReplyDelete11th Commandment, Do not "Should" on thy self. 12th Commandment Thou Shalt Not "Should" on other people. We all gotta run our own race. Stay in your own lane.
ReplyDeleteMy sons my way no mamby pambying just constanf support and love all on different levels all different people all treated differently all bloody exhasting all grown men 20s to 30s all still at home still learning new things everyday all been told they are idiots by schools 1 went to uni got a bma 1 self taught as didnt understand teachers several gcses and a level3 btech in busineess studies and an authour of 2 books and one a frustrated musical genius
ReplyDeleteThat's very encouraging to hear. My baby is 4.
DeleteMy sons my way no mamby pambying just constanf support and love all on different levels all different people all treated differently all bloody exhasting all grown men 20s to 30s all still at home still learning new things everyday all been told they are idiots by schools 1 went to uni got a bma 1 self taught as didnt understand teachers several gcses and a level3 btech in busineess studies and an authour of 2 books and one a frustrated musical genius
ReplyDeleteI told my ASD son today 'I love you but I don't love your shouting' - I got a hug and I love you too. It's the little big things that make it worth it....
ReplyDeleteIt doesn't matter what you're doing as a mom, some other mo thinks you're screwing it up...
ReplyDeleteIsincerely thank you for making this post today. For the most part everything that I do for my son is done only by me and I always have an inner battle Within Myself also what experiences to share and if he was to read what I post about my feelings about his feelings going through this journey. It's been rough, I stopped having the luxury of hugs and kisses and I love you Mommy when he turned four and he will be 20 in July. It's a hard thing to get used to. It's a very hard thing to do when you're doing it by yourself. I too have a son who's considered not autistic enough for a lot of things which has resulted in me having to do that much more with him on my own. I applaud you and your efforts. Very therapeutic for me to read your blog because there's so many things that I can relate to. It's parents like you thatshow me I'm doing right by my son. Thank you so much.
ReplyDeleteLike I based my end-of-April blog post on - Every month is April when you're an autism family! Thankfully these idjits only come out for one month a year, leaving us to parent in peace for the remaining 11.
ReplyDeleteI agree with Mel!
ReplyDeleteYour autism posts are so meaningful to me. Your brand of advoacating, through your blog, is so honest, funny, touching... #momgoals. Keep it up.
ReplyDeleteEleanor Roosevelt said [and people always seem to miss the beginning] "Do what you feel in your heart to be right, for you'll be criticized anyway. You'll be damned if you do and damned if you don't."
I will join you in the screwing up part- happily. My son and I are much more happy doing it our way than the rest of the world. And if I had listened to the comments of 'I don't know why you try so hard' etc we would not be where we are. :)
ReplyDeleteI am SUCH a BELIEVER in "a Loving Push"!!!! Very well written. I plan for failure, so that I have an exit strategy, but we always, Always, ALWAYS Try the New Things!!! <3 <3 <3
ReplyDelete