"When did you first suspect he had autism?"
I get asked this a lot. I don't have an exact answer other than "It's complicated."
I think back to those completely sleep deprived days of new motherhood (Which is different than the sleep deprivation I have now. Back then I thought it eventually he would sleep through the night. The good old days) I cannot for the life of me really pinpoint a moment of "What if he has autism?" I just have these memories now that resurface and it's a moment of flappy clarity. It's still so confusing.
His toddler playgroup. This is where it should of slapped me upside the head with some serious red flags right? Nope. Kiddo was a little older than most of the tots in there. He was already running NOT walking by 8 months and into ALL THE THINGS!!! One of the other moms used to joke how he was in "The Accelerated Program" while her kid just chilled like Buddha on her lap. The Kiddo was fiercely independent from the get go. He just looked at those kids just sitting still and was like "I'm out!". ZOOM! Off he would go and off I would run after him through the kind hostess' house that week. One that would not have been baby proofed to the level we were at yet. The other moms would get a chance to catch up on adult conversation and I would pray to God that he wouldn't break something that week.
Of course eventually all these kids that didn't walk as quickly as he did started toddling. The playing field leveled out a bit and I could go to houses knowing gates were up, Breakables were put out of reach. It got a little easier but then dammit wouldn't you know it those kids started talking. All the sudden words like "Duck" and "Mama!" were yelled out all the time. Kiddo started doing that too. A little later and not as much but he did them. Plus all the nice mommies in the group all echoed that wonderful catch phrase "Early walker, late talker!" See? Not a thing to worry about. It's totally cool. Don't mind me as I clean up the two hundred diaper wipes my son managed to pull out of the box and scattered around your kid's room while your kids actually want to play together, side by side. Keep talking! I'm listening! Oh you're pregnant again? Great!!! (In my head I am screaming "Are they crazy??? They want MORE of this???")
I think back to that last Christmas before we started down the autism road. My husband had set up the tree in our family room while I had the kiddo upstairs doing the dinner, bubble bath and fresh pajamas thing. He turned off all the lights except the tree and told me to bring Kiddo down the steps. I held his hand on the steps as we climbed down one by one. I counted each step out loud to encourage him and he echoed some kind of a hum talk pattern back to me. I remember him in his pale blue fleece footie pajamas toddling up the tree. His eyes were wide and a big smile on his face. He was so happy and decided he needed to add to our tree. Thus started a holiday season of whatever was missing in the house, go look on the tree. TV remote? On the tree. Where did my bookmark go? On the tree. Dimmer switch to lights downstairs? Yep, you guessed it. On the tree. Everyone thought "Oh my gosh! That's so cute! He's helping decorate it!" Now I think maybe he was just thinking "Oh we put stuff on the tree. OK, let me go get some stuff for it." Literal thinking is his way.
So yeah, it's complicated. I have a thousand memories that come back and I think to myself,"Why didn't I know? Why didn't we start this sooner?" It just seemed there was always someone around that made me think it was okay and not worry. I don't blame them. I don't blame me. It just what happened. I can't change the past. It's just a complicated one.
Exactly. I cannot pinpoint an exact "aha" moment. I will have to borrow "it's complicated"
ReplyDeleteYou're right it's hard to pinpoint. Mine was watching my son lay watching Thomas the tank engine while I banged pot lids above his head and he never noticed. and then after passing his hearing test I knew it was something. I remember being disappointed he was not "just" deaf. Deafness seemed less scary. You can "fix" deafness to some degree.
ReplyDeleteI didn't even know what autism was.
I can echo your thoughts exactly. So many other things were fixable. Autism was just plain scary.
DeleteWe didn't have an autism diagnosis until freakin middle school for my oldest! Of course he was born in 1995. Autism wasn't the "in" diagnosis at the time. It was ADHD, so that's what they gave him. You're doing great mama. You're ahead of the game.
ReplyDeleteI totally get this. Now that I look back the signs were there. Back then I had no clue what to look for, so I saw just thought he would catch up. It is complicated but you are kicking a** now and doing your best for your child.
ReplyDeleteI don't think there are many out there who have an aha moment! I remember asking her first paediatrician as we went through many many genetic tests etc etc, is it possible she has autism? The resounding answer was NO!. She must have been 3 years old, maybe older. Yet at 6 it took a different paediatrician a 20 min look at her to give me a very firm definite diagnosis. I have worked with Autisitc children for a long time and I didn't really see it, it was the loving, eye contact , socialising child that confused me. However, she is becoming more so, echolalia began at almost six and she now grits her teeth and bites down hard, occasionally she spins. Beating ourselves up with what ifs is what any parent does with any child, but it does us no good does it? We love our children, we do what we can for them, it will probably never be enough in our own eyes, I never believe others when they tell me I am a great mummy. WHY don't I? I think it is simply because I am a mummy and that is what we do !
ReplyDeleteGood post. No a-ha moment here for either of mine. I even remember thinking with the younger one that he was so much more social and verbal than his older brother had been at 2 that I shouldn't have any issues and then he ended up with regressive autism. Figures.
ReplyDeleteI've always referred to Dec. 17, 1997 as our kicked-in-the-gut day. I just wasn't expecting autism. ADHD maybe, not autism. Even though he had the constant crying and inability to settle or sleep when he was an infant. Even though his ear infections started at 6 months. Even though at 2 years, I noticed he didn't have the shared attention or conversational back and forth that an 18 month old had. Nowadays a pediatrician would pick those cues. Back then, not so much. But like Kiddo, he was fiercely independent, climbing into and out of everything. We suspected ADHD (Karen's right; it was the "in" thing). The autism caught us off guard. So you would've thought we'd learned our lesson, but our Aspie daughter wasn't diagnosed until 20. So, yep, still complicated.
ReplyDeleteGirls are much harder to diagnose! My son was diagnosed at the age of two, with little doubt in anyone's mind. Everyone in my family responded the same way, with relief and a "no wonder" attitude. The correlation of his behavior and quirks with my older sister is really unmistakable in retrospect, but she has never been diagnosed, not to this day. She was just a day-dreamy girly girl with a skip in her step that she still swears is in everyone else's imagination, and the inability to stop humming. She has no social skills because "she's an artist." Her strange, obsessive habits and complete lack of time management is cute to her husband. She's been scheduled for testing by neurologists who were convinced she was having seizures (because of her stimming, which they thought were petit mals), but she never went back to either of them for the testing, because both of them told her she shouldn't be driving. I think they were onto something, but they were wrong in their suspicions. She's an aspie who's flown under the radar. To be honest, she's not doing too badly without a diagnosis, although I think a gfcf diet would help her a bit. She's got a degree in music education, a great husband, and 2 NT kids that love her to pieces. I think she'll be fine.
DeleteOh I so get all of this - the not being able to enjoy conversations with others in their houses, or in mine because my attention was being demanded elsewhere. Also couldn't go to toddler groups because whilst my eldest would sit right next to me quietly and listen to the 'leader', youngest seemed almost unaware that someone else was in charge and certainly wasn't prepared to sit still and listen to them... It took someone else to suggest the 'A-word' to me, and even though I knew nothing about autism, that was my lightbulb moment - everything that had gone before suddenly made sense. And boy, what a relief that was!
ReplyDeleteI just recently remembered that for the first year of my son's life, he slept in his swing... and that swing ran all night (thank God, battery powered and not an old-school crank one). He has never slept "normally". There are so many things that I know now that I should have mentioned to pediatricians... No one moment, like you said - it's complicated.
ReplyDeleteMaybe my AH-HA should have been at 2 weeks of age... nope its just a "Quirk" she has wanting to be breastfed at a 90 degree angle with her body down my legs....and it was..."ok so she doesnt need as much sleep as other newborns" 20 mins every 6-7 hours. ...and "Ok so shes just Always hungry"... fine I have enough milk for 6 kids.... maybe it should have been at 5 month when she screamed blue murder over the softest stuffed baby rattle.... or 10 months when she finally sat unaided but only grabbed the same two toys repeatedly. .....it didnt even occur to me when she could only say 3 words at 26 months "ada"( poppa...my dad) ama ( grandma my mum) and No!... sure it hurt Mama wasnt a word she knew... and maybe shes just rwally attatched to that rock or rocks and shoes she HAS to have in her crib..... no my ah ha was a whack of a speech and behavior specialist at the age of 3 1/2 saying NOT onlyndid she have language delays but we believe she should be tested for Autism and Global Development Delay... no GDD but Autism like the proud neon blue flag it is. Surely not... so she speaks "TahneeSpeek" as we named it..a mix of gobbledygook and what was clearly englishneese. But hey I KNEW what the different grunts ment... she was talking now...after all I did not speak until 3 or 4 ( ok so I had an older sister who talked for me). The fact she was an only child around 3 adults ( we live with my parents) and she was still mainly grunts and full hand pointing. .. nope NOT even a flag going up!!!! So MY AH-HA moment... August 16th 2006... the day our worlds changed. But if you really want to know. .. the day it really showed.... February 26th 2003. The day my special person was lifted from my belly and handed over to the surgical midwife. Just doctor notes state August
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