On top of dealing with a narcissist for years -this makes co-parenting literally impossible- I also had to deal with abductor tactics revolving around my son’s Autism Spectrum Disorder. My son was abducted. All of my son’s developmental/social/mental issues stemming from his ASD diagnosis were suddenly blamed on me.
Like, just WOW.
I know all you autism Mom’s out there will back me on this post because you all get me. I did everything that I could humanly do for Zander. When he was 2 and a half, a well meaning family member pointed out he was exactly like another autistic child they knew. I denied it. Finally, my own mother pointed out the obvious, and it was apparent I could no longer ignore what was right in front of my eyes. He was my first child, and I didn’t know what was up and what was down. But my mom did. It’s not normal for a child to sit for 9 hours doing one task over and over again, without any concern over soiled diapers or hunger. You could not break his concentration no matter how many times you called his name. He could line up cars FOR HOURS.
He would bang his head on everything for long periods of time. He wasn’t being silly or cute. He would bruise & knot his head.
Finally, at 3 and a half years of age, I placed him in an early intervention school. That’s when the blame game started. You-Know-Who called the school psychologist and blamed all of his developmental struggles on instability of early childhood because of me. The psychologist informed me what he had said and reassured me she did not agree with him.
Then You-Know-Who decided to show up for 3 days to see Zander after not seeing him for a few years. After 3 days, he declared stubbornly that he saw nothing wrong with Zander. In his mind, all was perfect, and Zander’s issues were the result of being “smothered” and “spoiled”.
I was understandably upset that this man who was NEVER a primary caretaker could brush all my real concerns as the primary caretaker to the side like nothing. In my mind, this was not a caring or loving parent at all. I made an appointment despite this man arguing with me not to.
April 25, 2013 I took Zander, not to any of the local programs, but to a highly qualified professional at Pittsburgh Children’s Hospital. My mom and I were Zander’s primary caretakers, so we went together and filled out the extensive questionnaires.
Zander was diagnosed as being on the Autism Spectrum Disorder.
What a relief! Now we could finally receive referrals for therapies and real help. Now, I want to talk to you about those questionnaires. Not just anyone can fill them out. It has to be someone who has been there since Day 1. You-Know-Who was NOT. These forms go up to age 48 months, because the formative years are super important for a proper diagnosis.
Does your child name at least three items from a common category? For example, if you say to your child, “Tell me some things that you can eat,” does your child answer with something like “cookies, eggs, and cereal”? Or if you say, “Tell me the names of some animals,” does your child answer with something like “cow, dog, and elephant”?
Without your giving help by pointing or repeating, does your child follow three directions that are unrelated to one another? Give all three directions before your child starts. For example, you may ask your child, “Clap your hands, walk to the door, and sit down,” or “Give me the pen, open the book, and stand up.”
Does your child catch a large ball with both hands? (You should stand about 5 feet away and give your child two or three tries before you mark the answer.)
Does your child dress or undress himself without help (except for snaps, buttons, and zippers)?
Zander didn’t score well on any of those questions. I knew when he started talking. I knew how he acted around us as compared to other kids. Even when I was married to You-Know-Who, he wasn’t in the picture. He wasn’t there for the first words. He didn’t see him not responding to anyone around him. He didn’t see how withdrawn he was on a daily basis. You-Know-Who likes to blame me for that. He once told Zander that he didn’t start sucking his thumb until we moved back to America. Yet, it’s easy to find pictures of Zander sucking his thumb at 6 months, 9 months, etc. My mom had concerns about Zander’s lack of responses as early as 2 months old.
Here are directions on another form:
” This Checklist is designed to identify different aspects of development in infants and toddlers. Many behaviors that develop before children talk may indicate whether or not a child will have difficulty learning to talk. This Checklist should be completed by a caregiver when the child is between 6 and 24 months of age to determine whether a referral for an evaluation is needed. The caregiver may be either a parent or another person who nurtures the child daily.”
Do you see where I’m going with this?
You-Know-Who wasn’t there when Zander didn’t notice his surroundings during play. Zander didn’t care if we watched him or not. He didn’t notice us. He didn’t look up at us and laugh or smile. He never communicated with us that he needed help. He never actively engaged with us –to make us laugh, to get our attention, to make us watch him play, to show us his play, etc.
Now I’ve had two more children. Zander was 2 and a half when Killian was born. It didn’t take me long to see the differences. The coos, the engaging smiles, the clapping. Killian was more interested in us and our reactions, not TV. Killian reached milestones before Zander.
Yet You-Know-Who thinks he can just go to a psychologist and have him tested when a huge part of the diagnosis is those formative years. Zander does not have ADHD; he has ASD. No amount of Maltese psychologists can convince me, especially knowing the misleading and false information that You-Know-Who would undoubtedly provide.
So why am I bringing all this up, you may ask.
Because You-Know-Who has thrown Zander’s issues in my face one too many times. He recently informed my Mom, “Zander didn’t even know what a hug was when he was here.”
Like, I cannot even comprehend how someone can be so cruel.
Completely ignoring the hundreds and hundreds of cruel sh** similar to that since the very moment I informed him that Zander had “concerns”. Goodness, that would take far too many words quoting all the horrible things he has said to me during the path we went down because of Zander’s spectrum issues. Besides the fact that he was always just an overbearing controlling A-hole, his behavior and accusations during a very difficult period for me, Zander, and my family will forever be the main reason behind the breakdown of our communications. You-Know-Who forever lost my trust in him as a parent because of his behavior and cruelty.
7 years later and here we are. Nothing has changed.
Do people honestly believe that we don’t want to hug our children?? I know that all autism parents get this so much, but we hurt so bad, we die a little inside every single time our spectrum child recoils from our touch. Most children on the spectrum also suffer from Sensory Processing Disorder.
Zander had SPD severely. His autism itself was mild, but the SPD was severe. After his diagnosis, I hired a pediatrician nationally recognized for her work in autism. Received therapies to a Pediatric Rehabilitation Center. He had 3 therapies every single week. I was making 2-3 trips weekly, Tuesdays and Thursdays, and every other Friday for his psychologist appointments. I did all of this by myself. I had another young child. I was pulling him in and out of school for these therapies. Not all of them were covered by my husband’s insurance. I was paying anywhere from $86-$162 WEEKLY. In one ear, I had this man (You-Know-Who) verbally lashing me at every opportunity, trying to make me feel like a bad mom despite the fact he was on another continent. Telling me I couldn’t spend Child Support on gas/car maintenance or any bills. Telling me I was too negative. Causing stress at every opportunity. Then in the other ear, I had all these professionals and therapists telling me how intuitive I was with my child. They were amazed how I just got him.
And on top of all this, You-Know-Who was either threatening legal action or taking me to court. He and only he knew all about Zander and his issues. He was a self-proclaimed expert and could tell the courts that his autism was mild and of no concern, and I was just making it all up to stop Zander going on his first overseas visit. Regardless of the fact that after a year of services, Zander was hardly making real progress. His SPD was just so out of control.
Despite what You-Know-Who claimed after his 3 day then 3 week visit, Zander wasn’t just sensitive, he was overloaded. They weren’t tantrums 25x a day, they were meltdowns. He wasn’t sniffing everything, like our skin, just because. He wasn’t being difficult on purpose about his clothes, “just wanting to get his way”. He wasn’t being naughty when he had a screaming fit because plans were changed. He wasn’t being defiant about refusing to let me clip his nails, and I wasn’t being a neglectful mom because he had long fingernails.
It was Sensory Processing OVERLOAD.
Zander was all over the Sensory Processing realm. He had Tactile Defensiveness and Tactile Hyposensitivity.
Both of which can make it difficult to focus in class. I was told to buy the Out-of-Sync Child. So I did. I learned so much about Zander and with the help of his therapists, we worked on a sensory diet that was tailored for his needs.
Because Zander was either:
- difficulty wearing rough clothing (like jeans or anything with buttons)
- Instantly goes into “fight or flight” response with non-threatening touches (like hugs)
- Does not like messy activities – like finger painting and mud.
- Unexpected hugs, kisses or touches are usually unwanted
- very ticklish
- May not notice extreme temperatures resulting in dressing inappropriately for the weather (he wears coats in 80 degrees)
- Touching people constantly
- tends to invade personal bubbles
- poor body awareness
To accuse me of being the reason Zander didn’t like hugs is a statement born out of willful cruelty and willful ignorance. I wanted to hug my child. He didn’t like being held as a baby. He didn’t like being touched. I remember picking him up from one of his car-lining activities, the ones that lasted hours, and sat him on my lap to hug. He screamed, kicked, and clawed at me. That hurt. In the beginning, I thought I was a bad mom. In those beginning years, Zander was unmanageable. He was so difficult. It was so hard to be patient. Some days I yelled, some days I cried, some days I was mentally done, some days I felt like a crap mom. But as I learned, as I studied, as I actively put all of my needs to the side and focused on my special needs son, I grew as a person and as a mother and as an autism advocate.
I fought for my son against his own father. I fought for my son against untrained educational figures. I fought for my son in court. No one knows the utter exhaustion that I went through. The countless sleepless nights. The fears and anxieties Zander and I both went through in public. The dirty looks. The judgements. The financial hardships. To this day, I don’t know how I managed to pay for Zander’s therapies, the books for my own education, his weighted blanket, or anything else he needed while paying for a lawyer for 2 years, especially when Child Support stopped for months at a time.
Through it all, I have all the documentation proving that the first 5-6 years of Zander’s life were full of hardships that absolutely required professional help. Everyone who knew me personally -my friends, my family, therapists, psychologists- nobody could deny that I worked my exhausted, determined, strong ass off to get Zander where he is today. I advocated for him on the daily. Relentlessly fought for him and his needs. I sacrificed my own health for that child.
And I’d do it all over again in a heartbeat.
That year and a half that I homeschooled Zander, where he wasn’t traveling internationally, where he didn’t have to be stressed and full of anxiety from public school and bullies, he grew so much emotionally and physiologically.
He no longer flinched at being touched. Sometimes, even to this day, if you touch him unexpectedly, he will shout defensively “Don’t hit me!” Not because he’s being dramatic, but because touch sets off his “fight or flight” response. Touch is a huge issue and always has been as scientists have discovered. Finally, we could sit side by side on the couch, touching. Zander would play with my hair, with his arm around me. Sometimes he would let me put my arm around him. It was like beautiful music to my soul. There was a lightness on my heart that after all those years of craving physical interaction with my child, he was reciprocating. I never forced him. I still remembered the screaming, kicking, and clawing.
After all of this, my battles, Zander’s battles, where I’m only skimming the surface of information I could share, to have that thrown in my face!?
They took Zander to psychologist after psychologist until one was found that tried to remove his autism diagnosis. No, uh uh, that’s not how that works! You don’t take an 8-9 year old boy, after his mother has relentlessly fought and paid for YEARS worth of brutal therapies and professional help and say he doesn’t have “this problem” that I literally worked my ass off to help Zander function more normally in society. He is always going to have social issues. That’s part of his diagnosis, but those huge problems for the first 6 years of his life are either gone or not huge anymore. Zander appears mostly “typical” now.
Go ahead, pat me on the back.
That’s something that gets me the most. Not once did that man ever THANK ME. Not once. Ever. He belittled me, accused me, argued with a condescending tone and attitude for years while I fought to help our son. And he wonders why I can’t stand him? Even through all that, I attempted to be friendly. To educate him. To include him.
Don’t blame me for problems that I did not cause. I’m over it, and no more will I sit back quietly and accept the abuse. Not for me and not for my son.
And I have enough Autism Moms who can collaborate exactly what I’ve been through with the lack of hugs with our children.
I know all too well about sensory processing disorder (SPD). My son Adrian is 10 years old now but when he was younger his SPD was so bad he couldn’t be touched. He would head bang, scream, he even got to the point where he wouldn’t eat. Although some kids with SPD aren’t as severe, I had to puree foods for Adrian for almost two years just to keep him alive. Touching him would make him extremely uncomfortable. He would scream or bite you. SPD is very real and on the rise and more people need to be aware of its correlation with Autism. ~Amanda