I Should have Known

As a parent of a child with autism, or in my case two children, I’m sure most of us have had plenty of hard moments.

This was my very first hard moment, and also the hardest one.

I’m a mom of twin girls born in June of 2014. Let’s call them L and T. They were born 11 weeks early and we stayed in the NICU for six weeks.

Dramatic yes, but we had a good outcome. No damage on any organs, scans looked good and so on.

I was on maternity leave for two years and the girl’s dad left for work after we had been home from the NICU for two weeks.

I took all the waking hours every night (many hours may I add), had them all day, and took them to every doctor’s appointment (when you’ve been in the NICU there are quite a few of those).

You name it, I did it! A lot of times by myself.

I considered myself to know my girls the best. If their dad and I disagreed on something I used to say…’They lived in me, I’m right.’

When L and T where 8 months old their dad started to notice something wasn’t right. He’s a smart man and did a lot of research.

After a while he told me he thought that at least one of our daughters, L, was autistic. I could not have disagreed more.

Both L and T had great eye contact with me, they smiled at me, and even calmed when I picked them up when they were sad. They didn’t flap their hands (and still don’t) or any of the other stereotypical things you read about.

The only thing I noticed was that they didn’t react well to their names. I figured it was a twin thing. They had names that were similar to one another (not very smart in hindsight) and nothing else felt off to me.

So, I claimed my, ‘they lived in me’ statement and told him not to worry.

But he couldn’t let it go. We had a lot of arguments and discussions.

I still didn’t believe that something was wrong, but I made all the appointments I could to make sure and prove I was right.

We checked their hearing, went to a speech therapist and when they turned 2, we had an appointment with the NICU-team. I called them in advance about the concerns my daughter’s dad had and we got a longer appointment.

The doctor we met could not see anything conclusive, but “based on dads worries”, we got a psychiatric screening a few months later in August of 2016.

The day before the evaluation of L, the girls dad stood in front of us while we watched tv.

He jumped, shouted ‘look at daddy!’ and banged himself in the head with toy. No reaction. Not even a quick look.

He told me something like ‘this isn’t normal’ or ‘how can you not believe me’ and I remember exactly what I answered…

‘If I’m wrong, may I please be happy for the next ten hours?’

The day after we went for the screening with L. After the test we wondered what the physiatrist thought.

She answered, ‘How brutal can I be?’

There was no question, the screening showed that L needed the full evaluation. The day after, the same thing happened with T.

My world changed in two days.

I, the self-proclaimed super mom who knew her girls the best, the “they lived in me, I’m right” mom, was wrong. So wrong.

This was and still is by far the hardest autism moment in my life.

One of the things I still find hard about this is that when you read similar stories, when one parent is certain something is wrong and the other parent disagrees, it’s always the mom that notices.

I have never read a story where the dad was sure something was wrong and the mom didn’t notice a thing. Never.

How could I not be that mom? I, who spent every waking and sleeping hour with my girls?

How could I have missed it?

Their dad worked full-time and didn’t spend half of the time with them as I did their first two years. How could he see it and not me?

To this day this is still something that I feel very ashamed about.

I do everything for my girls. I do all the ABA training that’s required. I go to every therapy sessions with them.

If a problem emerges around their special needs, I do all the phone-calls and set up all the meetings with the right people needed to fix it.

And this is besides all the normal “moming” that I do. But none of this makes that feeling, that wound in my soul, go away.

I should have known.

Written by, Mine Yazar

My name is Mine and I’m a 34 year old mom of 4 ½ year old twin girls with autism. We live all the way over in Sweden and I’m a seemingly ordinary mom with two very special daughters.

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