Reminders on my Phone: The search for answers (Part 1)

Reminders of terrible times come via my phone. This is one of them. Another reminder of a mess terrible time was a text that arrived from WoundNet, but that’s one for another day. Today’s post will be the first of a series on how I got my son diagnosed as autistic and other things.

We received our son, (I can’t say we ‘adopted’ him at that time because the adoption order took very long to come) when he was four and a half months old. Before we even got him, I knew something was not usual. The foster mother had sent photos and I asked her if she’d ever had a little one in her care who had the ear shape and placement he had. I’d never seen it. But I only had three children so figured with her being a foster mom, more babies would have passed through and she’d have seen more. Those ears would come to a neurologist notice later on without my even bringing it up. But I’m jumping way ahead.

To this day, I infer a lot from the way she never answered my ear question.

Ever. I hate rudeness in general, and that was rude. And honesty would have gone a long way in preparing me for what was to come. Instead, she sent random videos, spoke about other things… I also didn’t like how they were still talking and stimulating and laughing and playing with him at ten pm. But I’m a ‘sleep train babies as soon as possible’ kind of mom so I am the type that puts you to bed by eight pm and if you stay awake, I’m quiet and leaving only a dim light on. But they were full on lights on, coo and play. I don’t know when exactly they were going to teach babies a more normal time to sleep. Or maybe I’m abnormal. Better that than no stimulation or talking at all, i guess! But yeah, that also soured my feelings about her. Then add how professionals also didn’t like how they cared for six babies at once which meant they were really spread thin, and it then just soured my feelings about foster care in general. And this was without the fact that my other child’s arm got broken while in foster care and we were not given the true story by the social workers.

I digress.

We received our soon at four and a half months old and the very next day, I told my husband that he didn’t feel right. It was as if he was a newborn, not a four month old. I wondered about the veracity of the social worker’s claims, who told us that the babies get thorough checks and see occupational therapists. If I, as a mom of only one day, could feel that something was off, wouldn’t an occupational therapist have noticed? What about the foster family? Did they seriously not notice?

Didn’t help that we’d been told by the social worker that some of our fees get given to the foster carers yet a foster /kanga mom who worked ‘for’ then told me they never saw a dime of any money. All they got was the government foster grant. Which is more than what adoptive parents get but that’s not the point.

Things were looking bad. A foster mom who doesn’t answer my question about abnormal ears, social workers who tell us a baby is totally fine and thoroughly assessed when he’s so obviously not. And lies about the first biological mother of our other adopted child. But that is ALSO another story. I cringe in adoption groups when people recommend this particular group of social workers. The one social worker is extremely wrong for the job. When we were going to adopt a third time, I found different social workers to use. That’s how bad things were with this one social worker (in a pair of social workers.)

Again, I digress. Sorry!

So there we were. Four and a half months old and a floppy baby. Then I noticed that when held, he pulled away instead of lying on your shoulder or chest. As floppy as he was, he didn’t enjoy being held or cuddled. It was WEIRD. Part of what makes me enjoy motherhood are the cuddles. Mine only let me cuddle him when he was burning with fever and in pain. Which only happened once. It was quite hard to take. He didn’t even like us holding his finger.

When he woke at night, he didn’t coo or cry or make any verbal noise. You just assumed he was up because you heard rustling. You’d go in wondering if he’s awake or merely shuffling in his sleep only to find big eyes silently staring at you in the dark. It freaked both me and and my husband out.

He hated noise. He started crying if I was in a different room and coughed. If someone dropped a book upstairs, he’d scream in agony. At first we thought it was trauma fro.mm being separated from his biological mother, then being separated from his foster parents. But no other adopted children had all this going on…

He started preferring only me. He would cry even in my arms if his siblings dared to even look at him. I felt terrible for them. We’d been so excited to adopt again but now they couldn’t hold him and love him.

The eyes… I’d read of mothers not bonding with their newborns, of mothers not bonding with their adopted babies and not knowing how that felt, wondering what they meant. I bonded with both my biological babies and our first adoptee immediately. But not with my son.

I didn’t feel a connection. Not at all. Till it hit me when he was six months old. I mulled over it for a day. I had studied Psychology in university but not in a clinical stream, my bachelors and Honours degrees were in Counseling Psychology. But we’d done neurodevelopmental issues and psychiatric disorders in my earlier years… I knew. I finally knew why I didn’t feel like my son loved me or ‘got’ me, why I felt like we weren’t connecting.

A day after it hit me, we were all taking a walk. I stopped and told my husband and children. “I know what’s wrong with Micaiah. He has autism. The way he doesn’t make eye contact with us. The sensory challenges and sensitivities to sound…” with a lump in my throat as I tried not to cry, I told them again, “He’s autistic.”

They knew nothing about autism. I didn’t know how this realisation was just the tip of the iceberg. I did know that here you generally only got a diagnosis when the child was three years old. My son was only six MONTHS old. What next?

Worsening signs of other problems appeared. As he grew older, it became worse. He didn’t respond when we called his name. I knew he could hear. But he acted like he couldn’t. He didn’t babble at eight months old. So, no looking at us, and no talking to us. That’s definitely going to increase the ability to form relationships! (Note the irony.)

He was eight months old but had never rolled. He couldn’t sit at all. So his gross motor skills were also affected by whatever was going on.

He was moving onto solids but hated the typical baby cereal textures. He spat them out, gagged… And as for finger foods… I cried once watching him try to put food into his mouth. It was as if he had some kind of palsy or stroke. His hand movements were slow and labored. His hand literally shook as he was trying to bring his hand back to his mouth. It was as if he was trying to life s boulder. It was painful to watch. This slow, shaky hand movement just to put a small item into his mouth was the final straw.

Something was not ok with my baby and he needed help.

An old friend recommended a paediatrician friend of his. This part still brings tears of hurt, frustration and pain. I drove 200km in total (there and back) only for him to lecture me like I’m an idiot, “Children develop on a spectrum. They don’t all reach their milestones at the same time. But if you’re worried about his hearing, go get a hearing test done.”

I know that children don’t develop at the same time. He was child number four. I wasn’t a new mother. Nor was I stupid. But I knew his development was NOT on a typical part of the spectrum. Not unless we’re talking autism spectrum!

I drove home weeping. And to this day, what hurts more is that even after diagnosis and confirmation of all my fears, this old friend valued his ego above the needs of any other worried parents who’d see him in the future. She valued his apparently fragile ego more than the human need to hear an “I’m sorry, I should have heard you instead of listening and brushing you off like that.” She never told him he was wrong. She said she didn’t want to make him feel bad.

Umm, so it’s ok to make a whole host of other sad, desperate mothers bad? I drove the 100km return trip crying. I KNEW something was wrong. To be treated like I was a fool was the worst thing. I see his name come up when looking for paediatricians and it still triggers heartache.

I saw a different paed the very next month. HER comment was, “You’re right. Something is very wrong.”

I did take him for a hearing test. Because of his sensitivity to touch, those headphones were a disaster. But even in that very few minutes, we saw that he wasn’t reacting to sound as quickly as he could. She wasn’t sure if it was his extreme fear (He couldn’t handle strangers) or the sensory stuff, or if there really was something wrong with his hearing on a deeper level.

So off to the Ear Institute we went for him to be assessed by an audiologist in order to put to sleep and have his brain itself tested. (Layman’s terminology.)

The process was horrific. The one hospital admission so bad that they canceled and let to book again. They couldn’t find a vein to administer the anesthetic through. He was screaming in fear, hunger, and pain as they tried that needle all over his body. In his foot, hand, anywhere. My husband and I wanted it to stop but the anesthetist and audiologist had set aside this time. We didn’t feel ok telling them to stop. Nurses were holding our baby down, rolled up in a blanket as he looked at us as if to ask why we weren’t saving him.

It was HORRIFFIC.

Finally, the doctors said they’d have to put the needle into his jugular vein (in his neck.) That’s when we said, “Ok enough. Enough.”

We asked if we could return on a different day, have him sedated using gas, THEN do it. If he could not even handle our gentle fingers touching him, how would he survive a needle in his neck? And how much pain would that cause?

The doctors understood. The audiologist was actually grateful. He felt as if he was torturing the child and it was horrific for him too. So we set up a different date.

I’ll gloss over being in theatre with my son’s blood dripping steadily onto the floor as they put that needle into his neck and got him settled for testing, the staff having to step over the puddle forming on the floor. I’ll gloss over the same experience when he had a brain MRI. I’ll gloss over a hungry child fearing everybody at this hospital. A child sensitive to lights in a very bright hospital. I’ll gloss over how he tore at the bandages on his hand and arms when he had drips inserted. I’ll just state that two of these unconscious tests taken months apart showed abnormalities in the speed at which his brain processes sound.

(I wonder if these horrible experiences can cause a type of PTSD in parents.)

Some texts that come to my phone remind me of terrible times. The Ear Institute had a waiting area geared towards children but the chairs scared my son. The pictures on the floor were terrifying to him. Waiting with him was hard. I felt so sad and kept trying to distract him.

But the texts also remind me of professionals who DID listen to me. They remind me of support and care I received. They remind me that if I could handle those things without falling apart, with my Father I can handle anything.

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