Excellent Advice

I'm almost done reading the book Daniel Isn't Talking by Marti Leimbach. At the end of chapter 18, I came across some excellent advice.

Andy, a therapist, was talking to Daniel's mother who was concerned about what people (strangers) might think about her son when they see him out. His advice - "Other people don't have children with Autism. They are not entitled to an opinion."

I.Love.This.

- becky

Sometimes...

As Isaiah gets older, it seems as though we get more and more stares from people. Maybe it's because he is somewhat verbal, but not always in a functional way. Maybe it's because something in the room is too stimulating for him. Maybe it's because he doesn't understand what we are doing or asking him to do. Maybe it's because we have broken routine. Whatever the reason, it makes my heart sad.

Sometimes, though, a stranger will look at my child and see a little boy who does not appear to have developmental delays. This morning, I was pushing Isaiah and Mallory in the double stroller up to church for a pot luck picnic. An older gentleman was walking toward us, and Isaiah peeked his head out from under the awning and said, "Morning!" The smile on the man's face made my day.

- becky

Oh So Literal

Sometimes I have to giggle at the literal response that I get from Isaiah.

Tim was outside grilling today, and I was preparing the rest of lunch inside with the kids. A timer beeped, so I asked Isaiah to "open the door and tell Daddy, 'The timer went off.'"

Well, he did that all right.

But which door did he open?

Not the door to outside where Tim was grilling...he opened the refrigerator door and said, "Daddy, the timer!" It was the closest door to him, and I wasn't specific enough in my direction.

That one made me Laugh Out Loud!!!

- becky

Way Late EEG Update

So I have been really, really bad about updating this blog. We're busy. That's my excuse. I'll try to get better.

It turns out the neurologist is not entirely convinced that Isaiah is/was having seizures. In lieu of putting Isaiah through (potentially traumatic for him and quite expensive) tests, we have decided to monitor his staring spells. If we notice him zone out, we are supposed to pinch his finger. Should he respond, his staring spell is realted to his autism. Should he not responds, back to the neurologist we will go.

We're good with this decision. We have noticed so much progress with Isaiah over the last few months, with very few staring spells. It seems the time that he has them, he has a cold or is tired - and he responds when we pinch him (in a loving, yet please-respond-so-we-know-you're-not-seizing way).

- becky

EEG

Friday, October 8th - Isaiah's Early Childhood Special Education teacher, Barb A, called to talk with me about some concerns she and Isaiah's other teachers have about absence seizures.

Monday, October 11th - We took Isaiah to see Dr. Hunt, a pediatrician at Dr. Henry's office. (Dr. Henry is still on maternity leave, so we could not see our regular doctor.) The only way to know for sure is to have an EEG.

Monday, October 18th - I took the morning off work so that Tim and I could both be with Isaiah for his EEG. The prep was NOT fun. We were to keep him awake until midnight, if possible. Yeah, that didn't happen. Our child, who usually does NOT want to go to sleep was asking to go night-night at 7:50. Are you kidding?! We managed to keep him awake until 10:30 on Sunday night. The next step was to wake him up at 5:00. Yeah. He was NOT happy about that one.

Isaiah was quite squirmy throughout most of the 40 minute test. (He was still for maybe 1o minutes of it.) Next step - wait for a call from the pediatrician's office after a neurologist has had a chance to read the EEG. Hopefully, he was still long enough for the doctor to even be able to read the EEG.

Thursday, October 21st - Dr. Hunt called me herself. I always get nervous, but appreciate it at the same time, when the DOCTOR takes the time to call me. Isaiah has spiking at regular intervals in his left temporal lobe. (I have no idea what this means.) She explained as best she could, but I remained kind of fixed on the part of our conversation when she wanted to be sure that I understood that 1/3 of children with autism have seizures, but this is NOT that kind of seizure.

We could be looking at an entirely new issue. Yikes.

Now, we wait again. We wait for a pediatric neurologist's office to call us with an appointment. I let a week go by, but still had not heard anything. I called and left a message, but I am still waiting on a returned phone call.

I would bet money that if this were there child, they wouldn't have wanted this appointment made a lot sooner than it is taking for us to get our child in to see the neurologist.

- becky

More Cars Vitamins

Isaiah has never really been a fan of gummy fruit snacks. I think it's a texture thing. I was a little worried when I purchased him some Cars Multi-Vitamins. Unlike when I was a child, vitamins for kids are now the same texture as fruit snacks.

Well, Isaiah loves his Cars Vitamins. In fact, he even asks for them, reminding us to give them to him each day!

Here's the rub - we bought him some Cars fruit snacks, thinking he will now eat these. He does...kind of. I'll open a package for him, and he will only eat the red snacks. He leaves the purple, blue, and orange snacks - refusing to eat them. Wondering why? His vitamins only come in red.

- becky

Progress Communicating

Isaiah is continuing to make progress with his communication skills. He has learned how to tell us, "I can't do it," when he is having trouble with something and needs our help.

Funny story - last night, Mallory decided to sit on the Elmo potty. (She didn't go, but it was exciting that she wanted to try it out.) Well, Isaiah saw this happening, and he walked up to me, put his hand on my arm to get my attention and said, "I have to go potty." WOW! We rushed him in and he never did go, but we were ecstatic that he talked about it. I really think that they will both get trained at the same time. I think his watching Mallory go through it will be really good for his learning. For now, we will just be patient.

- becky