For the sake of the newcomers to my life, I’m going to delve into how I became mother of three diagnosed autistics (My teen daughter and I suspect my other three year old twin daughter is also autistic but very verbal and not negatively impacted by it.) and two with ADHD, Apologies to those who have been there since the beginning.
I’ll go in order of timing of diagnosis. My firstborn was only diagnosed late last year and he turns 18 this year. What I see now was a hyper focus, I thought then was him being a stereotypical boy. (Love and knowledge of all things related to cars.) Or maybe I won’t go in order of diagnosis!
When he was young he spoke and walked early, read early (I taught him and his sister to read when they were age four and three respectively. And could tell me what kind of car was in front of us. There were absolutely no signs of any neurodivergence that I spotted.
It’s only in the recent teen years that we realized he had something interesting going on. Non-typical communication. I cringed when he spoke to my sister-in-law, thinking that how he was relating to her was giving the exact stereotypical idea of homeschooled kids-inability to socialise. He was ‘awkward,’ not aware that he sounded unusual or abrupt. But I ignored it.
Then he started making it obvious that he could live without people. He didn’t NEED human interaction. He would tell me he didn’t miss anybody. He said he didn’t want to make friends. Doesn’t “like people.” I had told my GP that I had an autistic son (Meabibg the one who was diagnosed first) but after meeting him, at my next appointment she asked if he’s the autistic one.
He also would just suddenly leave us while conversing as a family. I’d go look for him, and he’s reading a book. He couldn’t (can’t) think when there’s noise. He shuts down. And he had executive functioning issues. Logic and reasoning. First noticed those when teaching, and it became so bad in general that his dad said he’d never hire him if he went looking for a job under him.
Long story short, a psychiatrist did official tests and confirmed it.
My first diagnosed child is a difficult one. Lots happened. He was our second adoptee. Before we got him, his foster mother sent videos and photos. I asked her if she’d ever had a child in her care with ears like his. She never responded. The wars later made a neurologist and then a pediatrician this year wonder if he doesn’t have a genetic syndrome. Them plus other physical signs.
We received him when he was four months old, and the very next day, I felt something was off. He “felt like a newborn, not a four month old.” By six months old, I knew he was autistic and told my husband and children so. (Any negative person who comes across this will know it’s me. I’m just hoping they have stopped searching or don’t find me.)
Finally after a horror of awful developmental delay, muscle strength so bad that he was suspected of having cerebral palsy, having begun occupational therapy from 9 months old, inability of doctors to find good veins till they were sweating and I was on the verge of tears, postponing the admission for another time, and after an MRI to check there was nothing sinister going on in his brain, we had the diagnosis at three years old. Back then the pediatric neurologist told ME to figure out if it was what was called Asperger’s, or if it was high functioning. (Those terms are no longer used. It’s all now just autism.) He also had global developmental delay, hypotonia, SPD and ADHD. (Suspected FASD too.)
Our first adoptee, I figured had ADHD before I figured he had it. Educating her was mostly futile. Her eyes would dart all over the place, her memory was worse than it is now, she couldn’t focus, she was extremely impulsive and had verbal stims. I took both her and my son to an educational psychologist who diagnosed them both with quite hectic ADHD. They’re both on Ritalin. They both used to put books into the bath tub, into the toilet. Climbed high shelves, stuffed potato salad into the toaster, are creations, damaged clothing, couldn’t sit still for five minutes… Even medicated, I’m struggling with behaviors they would have outgrown if they were neurotypical.
Then my last baby. My three year old. She developed normally, though she cried a LOT and was a very restless sleeper. Both twins refused to sleep anywhere but in our arms. After I had suffered through their hectic pregnancy- gestational thyrotoxicosis and laryngopharyngeal disease reading their ugly beads-they were born at 36 weeks. Good sized, but they had stopped growing, and I had pre eclampsia symptoms so was admitted into hospital where they were born via emergency c-section two days later. Both placentas had stopped working, the doctors found when they opened me up. Our last born also had been in distress, evidenced by meconium in her sac and delayed crying.
She made up for it in the latter months. She cried much more, much louder and much longer than her twin, and slept restlessly when she eventually did sleep. She also made lots of noise and screams and trills instead of sleeping after we sleep trained them at four months old. She still has sleep problems. Less sleep than normal.
She had begun well. Counting, saying daddy, smiling socially…Then suddenly at 18 months or so, that all stopped. By 25 months, she too was diagnosed with “autism and severe problems.” She was no longer speaking, hated being touched, hated hugs, preferred being alone, was totally unaware of us as humans. She’d walk on us as if we were nothing. And stopped making eye contact.
It was the worst time emotionally since my now seven year old’s trials. When he was crawling stage, his arms were so weak that he’d crash down onto his face, often biting his tongue or smashing his gums. Bleeding often. When he finally started walking, he had terrible spatial awareness-running into counter tops, smashing into walls. I often felt like crying along with him.
‘Losing’ my daughter (Twin B) was just as hard emotionally. Not for my sake, but because her twin was (is) so attached to her. Twin A loved her, but my girl pushed her away, sometimes making her fall. Even now, my girl loves her with an aching love. When she returns from church, she runs to her twin, trying to hug her and shouting hello. Though she is no longer pushed away, there is no smile returned, no hug accepted. It hurts a lot. She has the twin bond but it’s not reciprocated.
She also has a definite developmental delay or lower IQ. She pulls me as I’ve mentioned before. No longer is she content to be alone. Now it’s the extreme opposite. She needs me. And needs me to feed her all the time. Which I can’t do unless I want her to die early from obesity related causes. She looks us in the eye especially when she’s trying out a word. Mostly she recites things she’s heard, sings a lots, and will either say a word, echo a word, or produces word salad. Where she looks me intently in the eye and says random things like, “Good gurr (girl), come, yellow, foot.” Rare, but much more often than when she was diagnosed.
Nothing keeps her attention. No toy, no activity. She is unable to do much, But she likes water. Splashing herself till she’s soaking wet when playing with the water table and sometimes wanting me to wash her hands. She has asked twice, “Wash your hands,” and when I’m tired of refusing to give her food, will always come with me when I in fatigue and exasperation will tell her to come with me so I wash her hands.
I am in love with homeschooling. But my children’s needs don’t work well with my physical problems. If there was an affordable special school, I’d send them all. But there isn’t. Not one that will keep them safe, that will have small classes and one to one attention. Not one where they can have all the extra help they need. And so, I pray that soon, my heavy angel will stop wanting me to walk aimlessly around the house or more often, feed her all the time. I yearn for the day she does not bang on my door crying when I’m trying to use the toilet. When she won’t pull me to stand up when I’m in so much pain that I need to lie down.
What I love is that though my heart sinks, just one look at her ‘so happy to see me’ face takes the “woe is me” feeling away, and I hug her happily, sit on the floor with her willingly when she comes in carrying bread given by an older sibling.
I have seen people ‘understanding’ when a desperate but physically healthy mom has murdered her children with differences. I have not even come close. My heart rejoices when I see them after they’ve taken a walk with their older siblings. I miss them even while enjoying the solitude. I would cry if I did find a school for them where they’d be happy. I feel like I’m the best there is for them. It’s complicated.
It’s life. Glorious and unbearable. Beautiful and hard. Lovely, and lonely.
I’m not checking for errors. Its 23:32. I’m going to try sleep again. (I suspect the AS meds are messing with my tummy so that woke me.)
PS The constant eating isn’t typical of autism. Quite a few children struggled with it in my “mothers of children with autism” group. But it’s not a defining feature or “usually there” feature like SPD is. These poor moms even had to chain their fridge and cupboard doors shut. One has a child so even are non food items. Mine is worse after going on Risperdal. But it was already extreme anyway. (2:03am and she woke me at 1:30am. Hoping she sleeps soon.🙏🏾 My head is achy and lifting her hurts my back.)
They said I should write a book 