When “Normal” was Normal

Lately, I find myself trying to remember what normal was like. What exactly is normal anyway? I’m not sure I’ve ever really known “normal” but there was a time before I had a child with autism and special needs. It seems so long ago now, like a distant memory…

I recently restored old photos from a backup drive. I’m glad to have the old photos back within reach because I honestly can’t remember if everything was “normal” in the beginning. I had started to wonder if I had missed the signs of what was yet to come…  So I sit here looking at old photos and examining them for something I could have missed or something I’ve forgotten.

Stephen had the cord wrapped around his neck at birth. I don’t remember him being blue for long, but then I wondered…

I held him for a brief moment before they cut off the end of the cord...
I held him for a brief moment before they cut off the end of the cord…

Stephen was diagnosed with Infantile Spasms at 5 months old. I’ve heard that having the cord wrapped around the neck at birth is common in babies who have Infantile Spasms – especially when the exact cause is unknown.

I remember he cried right away when he was born. He started to get pink right away and they cleaned him up and next dad cut the cord...
I remember he cried right away when he was born; he started to get pink . They cleaned him up and then dad cut the cord…

 Infantile spasms is associated with a significant risk of mortality and morbidity. Riikonen has followed 214 infantile spasms patients for 20–35 years and has accumulated the best long-term follow-up studies of these patients. In her series, nearly one third of the patients died during the follow-up period, many in the first 3 years of life. Eight of the 24 patients who died by age 3 died of complications of therapy with ACTH…

I was induced at 9:00 am and Stephen was born by 6:00 pm. Here he is looking like a normal healthy newborn in his brother's arms.
I was induced at 9:00 am and Stephen was born by 6:00 pm. Here he is looking like a normal healthy newborn in his brother’s arms an hour later…

Without even realizing it we had a vision of what life would be like…

We could never have imagined what life had in store for us…

This was just the beginning of our story

Stephen is now 7 years old. His diagnosis includes: autism, epilepsy, GI disorders (gastrointestinal), hearing impairment, vision impairment, and neuro developmental delays. He is non-verbal and legally deaf-blind. He went through 6 years of weekly therapy for feeding difficulties, most likely caused by GI disorder. He is self-feeding and eating solid foods now. We’ve started potty training, and we’re finally making progress towards independence and self-help skills! 🙂

A Harvard Medical School analysis of electronic medical records suggests that some children with autism fall into one of three distinct subgroups based on common medical issues.

This post is in response to:Weekly Writing Challenge: Threes | The Daily Post

Creative Commons License
Love, Support, Educate, Advocate, Accept… by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. Baby Pictures above are © 2014 Liana Seneca, all rights reserved.

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35 thoughts on “When “Normal” was Normal”

    1. Thanks! Glad you enjoyed it 🙂 There’s so much to our story that I like to try to keep it in small digestable pieces and focus more on the roller coaster of emotions!

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    1. Thanks 🙂 I like how the pictures add to this story. I’ve heard the one thing many special needs parents regret is not taking pictures during times when their children aren’t so healthy. I can relate. I didn’t take too many pictures after the seizures. His eyes drifted apart – and he went blind. Now that he’s had surgery and his vision has improved it’s hard for new people in his life to imagine where he came from and the obstacles he’s had to overcome developmentally. When things aren’t going as well as we would have hoped, it seems like something we won’t want to remember. Looking back I realize that we won’t forget by not taking pictures. Instead we wish we had something more to show how far we have come. I think even if things had ended badly we would have wanted something to hold on to and look at, because no matter what we will remember those we love…

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    1. Thanks Lita! 🙂 We have a busy week ahead… I find myself looking forward to the morning routine of reading the blogs I follow. I feel like I miss out when I have to start the day without a cup of coffee and some time to read…

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      1. Same here. I love looking through the Reader to spot who’s doing what 😉 Such a great way to connect. Coffee rocks too of course!! Enjoy your busy week

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  1. Normal is just a state of mind. My son has been acting very strangely (refusing to go to school and saying mean and violent things) the last few days and I have been really worried. I looked up some articles on the internet and found that a lot of mothers are facing the same problem. So what is normal then?

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    1. Yes, normal is just a state of mind. It’s all relative to each individual. With Stephen, the moody days are unique because he doesn’t talk. I talk to him and look for his reaction. Stephen is usually in a hurry to go to school and on days he doesn’t want to go there’s usually something bothering him. Sometimes it’s because he’s not feeling good and sometimes it’s something he’s heard someone say. Often it’s him reacting to our feelings, our worries, and our concerns. Kids react to the behavior of their peers too. It could just be that your son is sensitive to interactions with other kids his age. That would make sense to me because his mommy is so friendly and gets along well with others 🙂

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      1. My son is a very social child and loves the company of others. When he goes to school (screaming and crying) and once he settles down he interacts well with the other children. I just can’t understand why he doesn’t want to go to school.

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      2. Hopefully this phase will pass quickly and he’ll be back to wanting to go to school. I’m thinking maybe your son is upset over another child not wanting to play nicely? Just a thought…

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    1. Yes, always one day at a time – tomorrow has enough worries of its own. My son is 7 now and thankfully Infantile Spasms and complications from ACTH are worries of the past. What inspired my post was my grandson and the possibility of him having a seizure disorder in infancy. My step-daughter was asking “is this normal” and I had to try to remember what normal was like! I heard in a blog comment today, “Normal is just something made up to make boring people feel special.” lol Normal is definitely a relative term 🙂

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  2. Woah – my son was born with the cord around his neck twice and around his body once. When he was newborn he’d sometimes have a weird twitch of the eyes which sounds like what you described. These did pass, but no one I asked could tell me what it could be. He’s 12 now and he has a bunch of things going on, but is essentially healthy, so I guess we’re ok, but we’re definitely not a ‘normal’ family whatever that is. I look forward to reading more of your journey, though I know it’s a difficult one.

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    1. Yes, exactly! After the seizures I watched the twitch very carefully. When he went for an EEG the tech marked down when he twitched so that we could check if it was seizure activity (it looks very similar.) It turns out the twitch was normal for drifting off to sleep. The seizure symptoms change from a twitch to more of a tucking motion like doing a somersault – in a matter of days. But what exactly is “normal”? Our journey through special needs has been both the most challenging and the most rewarding experience of my life! Thanks for reading and following 🙂

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      1. I’m actually not sure where they do and don’t celebrate mother’s day today. We’re in the United States. I was thinking about it this morning, wondering where the tradition came from. It could have been the clever idea of a greeting card company for all I know 😉

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