I’ve been in a funk. It’s bit more serious than ‘the blahs‘ but I’ve passed it off as post-holiday blues, then as the universal diagnosis of “Pandemic Fatigue”. But I think it might have something to do with the fact that my twins are turning 18 next week.
It’s impossible to believe that this time has passed because as blurry as so much of our life has been as we’ve jumped from one crisis to another, I can remember my state of mind and feelings of being a new parent to O & W, like it was yesterday. I can almost taste the fears I had for them with their diagnoses, as strongly as I can feel the desperation and ache I felt in wanting to do whatever I could to optimize their chances for a full and rich life.
I suppose in some ways, I might be experiencing something akin to a ‘mid-life crisis’ though I’m not pining for missed opportunities for myself, but for all the things I did not accomplish for my boys. Realizing eighteen years went by in a blur because we were always reacting to one thing or another, when I wanted to be intentional and piloting their course to new skills and more opportunities.
Today I’m feeling bitter that my marriage fell apart. Without dipping into those details, I’ll just say that my regret is that I believe whole-heartedly that all three of my boys would be in a better place right now if they still had a two parent household. With two active parents, so many challenges could have been prevented and so many more goals could have been achieved. Instead, I spent most of the past seven years coping and treading water when I could have been working on skills with the boys.
But life doesn’t always turn out the way you think it will and despite the change of course, O and W have exceeded so many people’s expectations and have made me so proud over and over again. Eighteen years ago I was told they would likely need to be institutionalized. That they would likely never communicate. That they wouldn’t be able to learn beyond the age of six.
The learning never ends. They both communicate in ways that touch me more than words ever could.
Eighteenth birthdays aren’t meant to be sad, even when a pandemic lockdown prevents you from finding ways to celebrate it. But with my melancholic mood, I thought I would go back in time for this Flashback Friday and dig up an old blog that might answer some questions I often get from people, even now, about what the signs were that alerted us to seeking out an assessment for O and W, that later led to their autism diagnosis.
So here you go..
MONDAY, APRIL 06, 2009
Over the last four years, I have had so many people ask me what first alerted us to know that something was wrong with the twins, to lead to their diagnosis. I have to preface my response by saying that our early years were not easy. In fact, they were so difficult that they are nearly a cloudy dream that has almost faded from memory. I can say that in retrospect, so many signs were there, but we were probably too tired to notice. It’s true that we had an older ‘neurotypical’ child to compare the twins to, but in our defence, we were told over and over again “it’s different with twins. It’s a twin thing.”
Rather than list all of the signs by assigning them to who experienced what, I’m just going to list them all in point form. I couldn’t dare break down the signs chronologically as they appeared. I wish I could. But as I say, that time in our lives really was a blur. I can only say that these signs were pretty solid all prior to the age of two for both boys.
- often appeared deaf; did not respond to name, twins did not acknowledge each other
- eyes did not track objects or people’s movements
- lack of physical affection, would not tolerate being cuddled or held for length of time
- appeared to be colicky- excessive screaming, fussy, difficult to calm
- could never develop a routine for either boy, sleep schedules were erratic & unpredictable
- introduction to foods did not happen as it should- rejected entire food groups, once they found something they liked they were fixated on that food and we could not even rotate brands
- PICA- eating, licking non-food items including bricks, threads, dirt, rocks, crayons, etc.
- sought out different textures- ran fingernails over pieces of paper, along carpet, fabrics, etc.
- constantly covered ears with both hands
- flicking of fingers in front of face
- no interest in toys, activities (even bubbles) or other children
- fixation on particular objects (pulling threads out of couch), television
- toe-walking, excessive jumping on the spot, flapping of hands
- strange vocalizations
- lack of eye contact
- had a couple of words, appeared for a day, then disappeared
- no communication. used adult’s hand as if it was a tool or extension of their own arm and dragged around to reach for desired object.
- TEMPER TANTRUMS!!!!!!!! could last for hours and hours with no explanation for the cause. No self-regulation to calm down.
- excessive hyperactivity
- ‘inappropriate’ emotional responses- laughing/giggling or crying for unexplained reason
- extreme difficulty with transitions from place to place or activity to activity
- did not try to ‘please’ parents in any way
- could not act on any commands/receptive instructions
- zero imitation skills
- zero attempts at labeling (pointing to objects and saying “huh?” or other typical baby commenting)
- seeking out of dangerous stimuli (ie. if Will pinched his finger in a door, he would stick it back in over and over again)
- appeared to be a lack of ‘feeling’ when in pain.
- not hitting milestones for gross motor or fine motor skills (climbing stairs, jumping, grasp, etc. not typical)
- gut/digestion issues
- swallow & chew issues
- visual fixation to view objects (that were not obvious to us) from certain, odd angles
- extreme fixation or addiction to preferred items – milk bottle had to be specific colour/type
- lost in their own world. Had own agenda. Oblivious to world around them.
- extreme, unexplained fears
- huge anxiety
- sought out deep pressure.. would often try to squish behind people seated in chairs, or bury himself under tight places like the sofa or bed
- like to cocoon himself in heavy bedding
It makes me sad to write this. Looking back I suppose to anyone else, it would have seemed obvious. But we were overwhelmed parents with three kids under the age of 2 and had no time to evaluate what we were experiencing. We were just in survival mode. It wasn’t until their first birthday that we started begging for a referral for assessment (after the kids seemed to have a significant turning point where they appeared to have lost what little gains they had made). No point looking backwards. I just hope this might help another parent, family member or friend, to help catch the signs early so that a child might seek out an early diagnosis.
I am not a doctor, I’m just a mom. So if I could recommend anything at all, if you have a child who shows any of these signs — don’t panic and assume it’s autism. But if you’ve got that niggling feeling in your gut that something is a little off, I would alert your doctor AND I would journal it all. There is nothing worse than waiting forever for an appointment with a medical professional and drawing a blank when they ask you why you’re there. Be ready with your list.
And if you the autism diagnosis is given.. take a deep breath. Look at your child and remember they are the same child they were before you heard those words and your love, your strength and resourcefulness can move mountains. There will be struggle, there will be tears and some heartache. The lows will feel lower than anything you’ve felt before, but I promise you.. there will be highs. Highs that will elevate your lives to an extraordinary place.
For more information: https://autismcanada.org/autism-explained/early-signs-characteristics/
I’m trying my best to pay it forward by dealing hope and sharing stories & tips on caregiving and how to survive hard things. I blog a lot about single parenting my adult twin sons who both have autism, and the challenges we face in surviving the everyday challenges and planning for a future full of unknowns.