Tag Archives: epilepsy

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
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Breaking the Silence on Autism and Immunizations

There are many controversial theories on autism. What’s even more relevant is what isn’t being said about autism.

I’m often asked by family and friends what my thoughts are on autism and immunizations. Our son began having seizures 2 weeks after a series of booster immunizations (including DTaP/HepB/IPV, Hib, and PCV.)

One thing that isn’t being said is that immunizations won’t trigger illness in autistic children. Most people are aware of the possible adverse affects of immunizations on healthy children.

Autism has a number of other related health conditions. Children with conditions like feeding difficulties and seizure disorders, are more likely to suffer adverse reactions to immunizations.

Continue reading Breaking the Silence on Autism and Immunizations