Seiz(ure) The Day!

My wife and I have an 8 year-old boy with Autism. We have been through the wringer, experienced the highs and lows, and triumphed regarding services for the boy. State Regional Center, Insurance Company, School District, physicians, psychiatrists, and aide workers... we've seen them all. Our journey with my son is not a tale of woe of lack of services (yet), but rather a careful weaving and negotiating of which services are the most appropriate. Through it all, and looking forward, we are confident that we have the tools and Los Angeles has the resources, and we have the patience, and my boy has both the steadfast determination and endearing nature to make this journey the best it can be.

We are, at long last, and confidently, hopeful.

***

My wife was the first to say something. She came to me and said "have you ever noticed the baby girl rolling her eyes? There's something I don't like about it."

I started noticing it, too.

***

Absence seizures (formerly called petit mal seizures) affect about 1 in 500 people and are most common in children aged 5 to 15. Sudden increased electrical activity in the brain neurons, result in what is commonly seen as a staring spell of unconsciousness, usually lasting 3-10 seconds (more or less in some cases). They are usually harmless and mistaken for "daydreaming" in school aged children. About 70% of the time, the child simply "outgrows" them. There are very successful medications to eliminate them entirely with few side-effects.

About 25% of the time, however, they can develop into tonic-clonic (grand mal) seizures. Tonic-clonic seizures present more the way that most of us think epilepsy looks (brain activity accompanied with movement, convulsions, impaired speech, etc.). Untreated, they can, in rare cases, lead to permanent brain damage.

***

All of that information was from WebMD. I found pretty much the same information on Hopkins Medicine, Mayo Clinic, NIH, and even Wikipedia.

Where I didn't find any of that information was from my daughter's neurologist.

***

My wife refuses to take our daughter to the dentist. Not because she has any issues with dentistry, but rather she can't take her baby crying or scared, and, let's face it, the dentist can be a scary place. She has no problem taking the boy, however. So, somewhere in the parenting responsibility negotiations I drew the "taking the baby girl to the dentist" straw.

I could talk about that forever, but I need to speed this up.

So, we took Jade to her pediatrician and told him we were seeing what we thought were seizures. He agreed. He asked us to try to catch it on video and put in a referral to a neurologist to our health insurance company. There are no pediatric neurologists in our HMO network, so they would find one that accepted our insurance. It was approved. An appointment was made.

And we took our baby girl, our precious pride and joy, our perfect angel, here:

No. We did not. This "doctor" was not even licensed to treat children. An angry phone call was made and we were sent to another neurologist.

The office was a little nicer, yet still filthy. The doctor was friendly. He was sweet to Jade, and she was an awesome patient. He did a simple EEG and it confirmed the seizure activity. He told us this goes away 100% of the time and take these meds (wrote a prescription).

"What about side effects?" "What are seizures?" "If they are harmless, and go away 100% of the time, why do we medicate?" "Can you tell me more?" Were just a few of the questions we were asking... that went unanswered. He told us to start giving her the meds and come back in three weeks and he can answer all of our questions then...

"But, how do we dose up the meds"?

I was handed a piece of paper.

"I have a lot of patients to see today. Google this"

So, we will not be going back there either.

We called the insurance company again. We (with our pediatrician) have requested a "real" neurologist... in the neighborhood, not the cheapest quack on their payroll. We will have a "professional" EEG done at Children's hospital Los Angeles and do our on-going care with a new neurologist.

That has not been approved as of this blog.

Meanwhile... The seizures continue for this little angel.

***

As is the case with most of my blogs, I fully intended to write about how fucked up and wrong access to health care is in our country... But I'll save that because I want to end this about something else...

***

Jade, I promise you that your mother and I will get to the bottom of this. You are our precious baby girl and you deserve better. I am neither scared, nor intimidated, by this impending health care battle. You will thank your mother and I...

But thank your brother first.

That's right. The same one you jump for joy to see.

He is the one that has taught us all how to fight.

On Being Neurotypical

In our community we often use the term "Neurotypical" (or NT) to mean "Not-Autistic". The term "Neurotypical" means having a typical neurology.

Jack has a sitter three days a week after school. Almost a year ago, we went to an agency (Care.com) looking for someone to "have fun" with Jack 2 or 3 days a week after school. At the time, he had therapy 5 days a week in addition to school and we felt he didn't need another therapist... we just wanted someone to have fun with him... he deserved it.

We interviewed several sitters, found one we really liked and the young lady had to decline days before she was to start. So, I re-posted the ad, and went to a bar to watch a football game one Saturday afternoon. I received a new response... not only was she interested she was in the neighborhood and we met 30 minutes later... and we had our newest sitter.

And the jokes started instantly about how much she looked like us. "We didn't know you and Julie had an older daughter" "Is D your sister or Julie's?" "She's too young to be Jade's mom" and we laughed along.

What we didn't expect was to gain a family member. What we really didn't expect was for Jack to gain a role model.

You see, D is an adult living with ADHD. She told us when she interviewed with us and Julie and I had the same misguided thoughts we had before about adults with ADHD. But this was different. It wasn't a buddy of yours forgetting where their car keys are and saying "must be my ADD" or not remembering a name of a friend and saying "must be my ADD" or finishing one of your sentences and saying "must be my ADD". She was not self-diagnosed and, in many ways, was very like Jack.

We had a lot of challenges with Jack taking his medication back in the day. One of his concerns was that no other kids took Ritalin to go to school. He discovered that Billy Joe Armstrong (lead singer of Green Day, and his hero) did, and that worked for a bit. But then he discovered that D did as well. Now he had someone who understood. We encouraged the two of them to talk about it as much as possible.

And they did.

We weren't looking for a therapist... yet we found one. She often asks us what she should do in situations. We told her her instincts are always right... because they always are.

They're rough on each other at times. I've listened to them argue through homework. I've seen him sent to his room for bad language. I've counselled D when she didn't know what to do.

But there is always a love and understanding between those two that I never understood.

And perhaps I never will.

***

A few weeks ago, D posted something very simple on her Facebook page... one word really.

"NeuroAtypical"

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I am learning through her what I can not through myself. She is very open about her own diagnoses. I'm learning what adults with ADHD are. I see the signs once in a while. I test her once in a while. I watch her use self-focusing techniques (she might not know that I see them). I watch her guide and inspire my son.

I pick her neuroAtypical brain all the time.

Most importantly, I watch the two of them enjoy each other.

Julie and I had the pleasure of meeting D's parents. They came over for a brunch one weekend when they were in town. I don't think we thanked them enough for how wonderful a job they did raising her. They told us how much D was like Jack at that age. They may have given us a glance of our future with the boy.

And for the first time in a long time... Julie and I were hopeful.

If only.

***

There is so much to learn about our kids from adults on the spectrum...

The neuroAtypical spectrum.

 And Yes, we ordered D her shirt too.

Thank you for loving my boy and teaching us so much.