Monthly Archives: July 2017

EEGs, ASD and ABCs?

June 2017

Funny how when you know something is coming, but can’t bring yourself to actually admit it. That is where I found myself, unable to actually post my last entry. So here’s the update…

We met with a pediatric neurologist, who agrees what I saw sounds like seizures. However, she feels like they are a different type and does not agree with the medication that was prescribed. We were told to stop the medicine and wait for EEG results. Not sure about stopping the medication, as we have noticed a dramatic change in his mood. He has become very fearful and is showing A LOT of anger. I have been working on preparing him for the EEG, trying to make it fun, not scary.

The psychiatrist took a look at our ASRS and made an official diagnosis of Autism Spectrum Disorder. I still have no emotional idea of where to land with this one. Sure, his delayed areas are obvious and he has some quirks, but there are so many ways in which he approaches tasks and the world that are so amazingly unique. Do I wish everything wasn’t so hard for him? Absolutely. Do I wish he didn’t live with so much fear? Of course! But without the things that are so uniquely him…he wouldn’t be my Mr. Man.

IMG_9805I knew it was coming but now what does it mean!? I don’t even know the proper PC terms…my child with autism, my autistic son?… Do I even care? Do we tell everyone (I guess I just did!) or do we keep it to ourselves? How do I help him through obstacles? How do I equip him to face the world?

Because one thing is for sure… he’s capable, we still have expectations for him and we know he will succeed. But how do we help him be successful in a world that approaches everything so differently from how he processes it?

 

 

July 2017

I always tell Mr. Man that he is the bravest person I know. He is! I struggle with my own anxiety, I know what it feels like to be fearful. I know how much every new situation sets him into panic. Yet, he amazes me all the time. He was extremely nervous about his EEG (and the level of exhaustion he had to be at preceding the test only makes it worse) but he was so brave! I was worried that he’d be too nervous in the unfamiliar surroundings that we wouldn’t be able to get him to sleep. Was I wrong! He hopped onto the table and feel asleep before he was even hooked up. I actually became concerned that he would wake up before the nurse was done prepping him. Afterwards, we told him he won at sleeping. He knew he had to go in and sleep, and that is exactly what he did.

Even in stressful or emotional situations, Mr. Man always seems to find a way to make his Mama laugh. Before the test, we stopped to use the bathroom. He would not let me flush the toilet because he was worried that the loud noise would wake up all the other sleeping children. How I love his heart! My Jekyll/Hyde boy…. stubborn, ornery, angry much of the time, but so thoughtful and kind-hearted, too.

***EEG results came back completely normal. While he may have actually had a few seizures at the beginning of the year, it showed nothing to make us believe there is any ongoing problem. The doctor is hopeful that they were just isolated incidents and that we will not see any more.

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Waiting, how I hate it.

***The next few posts have been written for some time. However, emotion and reality would not allow this Mama to push the post button. It has taken a lot of processing, but here they are.***

March 2017

Waiting has never been my forte. I hate waiting. I make a plan and I move forward. Lately, life has thrown a lot of ‘okay, but wait’s’ at me. I don’t like it.

Mr. Man had an appointment with the psychiatrist, and I basically unloaded on him. Mr. Man had been seeing him for a year and I’d seen relatively little change. Sure, he ebbed and flowed. But, other than tossing us medication, I didn’t feel we had been given any direction. No real way to help him. I was very up front with what was working ,what wasn’t, where we still struggled and my fears for Mr. Man moving into Kindergarten (another blogpost entirely!)

From this discussion came two thoughts…

  • Seizures
  • Revisiting Autism

First, Mr. Man has had two distinct instances when I believe he has had what is known as an absence seizure. Based on my description and Mr. Man’s teacher’s description of forgetting common daily routines and general confusion, we agreed to start an anti-seizure medication while we waited on a referral to a neurologist– two months! Second, Autism. We had been told that while he did have several red flags, he also showed too much interest in interacting with others. This by a doctor I was never fond of, when Mr. Man was barely two years old. As I said before, he has seen his psychologist for a year and has never said a single word to him….complete refusal. So, he agreed that we should take another look at this possibility. My husband and I took the ASRS and we wait…..two months!!

This is a lot to sit and wait on. 😦

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