Thursday, August 30, 2012

Just When You Think You're in the Clear

Somewhere in the back of my mind I always knew that there was a possibility that yesterday could happen. As I was finishing lunch I got a phone call from my youngest son's teacher. She called to say that as they were coming in from lunch, my son's legs buckled under him, he turned pale white, and his lips started turning blue. His aide brought him into the classroom where it was obvious that he couldn't walk right and needed to lie down. I can't say for certain because I wasn't there to see it, but it sounded like an atonic seizure. He used to have those when he was a baby.

I'd like to think that maybe it was just the heat or maybe he was a little dehydrated. I can rationalize with the best of them, but my gut says that it wasn't heat or dehydration. It wasn't that hot yesterday, and he usually has no problem drinking fluids. Also, his teacher, his aide, and the principal all witnessed the episode so it's not based on one person's perception.

I'd almost forgotten about them because it's been so long since he's had one. Even when I wrote about the ketogenic diet last year, I knew there was a possibility of a breakthrough seizure, but I never focused on that. It's easy to go merrily along through life and then WHAM! you get kicked in the face. I refuse to get paranoid, but I can no longer be relaxed and complacent.

So, yesterday was a wake-up call to remind me once again that life is not to be taken for granted. In the 8 years that he's been seizure free, this is the only time he's had a breakthrough seizure - that I know of. Let's hope it's the last time.

"Heal me, Lord, and I will be healed; save me and I will be saved, for you are the one I praise." Jeremiah 17:14

Monday, August 20, 2012

The Talk

Sooner or later some of us will have to have "the talk" with our children. And no, I'm not talking about the birds and the bees. I'm talking about the talk that we parents have to have with our typical children regarding the care of their sibling with special needs. Frankly, I think the birds and the bees talk is easier.

I don't know what possessed me to do this, but a while back I stumbled into a conversation with my oldest son (who has Asperger's Syndrome) about the differences between him and his brother (who has moderate disabilities resulting from a neonatal brain hemorrhage). The conversation went along the lines of him complaining about something that wasn't fair. I pointed out to him that his brother was unable to do many of the things that he took for granted: riding a bike or a scooter in the neighborhood, shopping with his allowance money. I then steered the conversation to the future. I said, "You know, your brother's life will look alot different from yours. You will probably drive a car, go to college, get a job and live on your own. Your brother won't. In all likelihood, he will live in some type of care home or group home after Daddy and I pass on. You have to promise me that you won't forget your brother. Promise me that you will always look out for him." He said, "I will, Mom. I promise I won't forget my brother."

That's a pretty heavy load to lay on a 12 year-old and I'm not for certain that he understood the full extent of what he was promising. I'm also positive that we will have to revisit this conversation more than once. It's an awkward but necessary conversation to have. Since I know that my youngest son will need some form of care and supervision for the rest of his life it's imperative that he has a family member who will look out for his best interests. Make no mistake, I want him to live at home with me and my husband for as long as he can, God willing. However, we're not getting any younger.

Ideally, my husband and I would like to be in a position to help select the group home while we're still living rather than have a social worker place him after we've died. Personally, I feel it would be less traumatic for everyone if we were able to ease my younger son into the transition. I'm thinking about this more and more as the boys get older. Tomorrow begins a new school year: my oldest son will start 7th grade and my youngest son will be in 5th grade. Some say that I have a while to go before I have to make any decisions, but, really, time flies by. The boys will be out of high school and into adulthood before I know it.

So, in addition to the birds and the bees we also have to talk about family responsibilities. Of course, I really don't want my oldest son to look after his younger brother because it's merely his duty or his responsibility. I hope he does it out of concern and love for his brother. One can dream.

"He defended the cause of the poor and needy, and so all went well. Is that not what it means to know me?”declares the Lord. Jeremiah 22:16

Wednesday, August 15, 2012

Daytripping: Bodega Bay

Jetty at Doran Beach
Bodega Bay is another favorite beach spot for my family. The drive to Bodega Bay is a much easier drive than the drive to Stinson Beach. There are no windy (long i, not short i) coastal roads bringing you down to the ocean. You simply drive through the town of Petaluma, meander through dairy country, and before you know it, you're at the coast. No terrifying descent on a narrow road where you have to share the road with bicyclists and idiot drivers. OK, maybe "terrifying" is a bit hyperbolic.

Testing the water
Some of the beaches at Bodega Bay can be difficult to access as you must climb down a cliff to reach the beach. Oh sure, there are "stairs" but they are rustic to say the least and they can be slippery. And heaven forbid that you have to use the facilities, because then you have to climb back up the cliff to reach said facilities. (I'm thinking of Portuguese Beach in this case. It's gorgeous, but...) If you, or someone in your family has mobility issues, I do not recommend these beaches. This time around, we went to Doran Beach. Doran Beach is right off the parking lot so it was easy to get to. It is also a dog-friendly beach so we were able to bring our rat dog. We did have to pay $7.00 for parking, but we considered this a small price to pay for easy access to the beach and to facilities.

"Hi, Mom!"
Doran Beach is a sandy beach instead of a rocky beach. It also has camping areas for tents and RVs as well as areas for day use complete with picnic tables and bbqs. I'm definitely going to remember this for next year's camping trip. There is a Coast Guard training station there, so we got to see a Coast Guard helicopter go on patrol (or whatever) and a Coast Guard boat. Since my oldest son's latest obsessions are airplanes and helicopters, this was exciting for him.

Can't say we weren't warned
We parked our butts on the beach near the jetty. My husband and oldest son spent some time exploring the jetty where they observed people fishing and trying to catch crabs. There was plenty to do for the camper or the daytripper.

I'm not going to say that it's the best beach I've been to. Honestly, I still prefer Stinson Beach. But as far as ease of access is concerned, I would say that Doran Beach in Bodega Bay gets an A+.

Hermit crab


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