Everything Changes

 

My Mom and brother visiting the new house.

 

Back in the early 2000's when my family lived in Texas, my husband, brother and I were involved each year in Family Bible School at church. During the week long summer bible class we would do a play based on the year's theme. Each night of FBS after the class portion we would put on a 30 minute installment of the play. It was great fun, helped cement some of the lessons we'd been learning, and in some cases, put popular songs of the day into the "never hearing that song after this would be too soon" category. For me, anyway. One of those songs was "Everything Changes." I think we changed the lyrics a bit and used it when we were teaching about Paul. But these days that particular refrain, "Everything Changes" is stuck in my head

The changes began earlier in the month with the death of my mother. That was a blow no one saw coming even though she was 75 years young. She was strong, almost too independent, still caring for my brother who still lived with her. The one thing she could not do was drive. Her nerves were too bad to handle that so while she lived near us, my husband and I taxi'd her around town. Other members of the family did, as well, when the Hubs and i couldn't. 

Her death left more than just the void of her being there. It meant that someone new would be my brother's caretaker. Born prematurely and placed in an incubator with no oxygen for a few minutes by a careless or overworked nurse left him with mild cp (cerebral palsy) that affects the left side of his body and fairly mild mental challenges. Yet he is very intelligent. He may be at a loss for math skills, but he is the family historian. He remembers things many of us have forgotten --and we three sisters are all younger than he is.

My mother never left a will. Whether she didn't want to go through the expense or simply didn't think it was necessary ("Bobby knows who gets what") she didn't get one done, though I urged her to do so many times. With few exceptions there haven't been any squabbles over material possessions. Bobby has been a different story.  There have been heated discussions, hurt feelings, and a lot of stress, simply because two bull headed sisters each wanted what was best for Bobby. Even a few nieces got in on the act. In the end, Bobby spoke up. While he would love a place of his own, it's not going to happen yet. But while he would be happy and taken care of with any of us, his wishes are simple: He wants to be able to go to church every Sunday, wants a karate class, wants to go to the movies now and then. He chose to be with me. 

While I hate all the stress that this has caused, I am happy for this new chapter in my life. Though we are 14 years apart, Bobby and I share a closeness, just as our sisters do with each other.  I grew up taking walks with him, listening to the ghost stories he loves so much. And yes, as the years have gone by, I, the youngest of the family, have been guilty of mothering him a bit. I mother everyone who comes into my line of sight. It's just part of me to be a bit of a mother hen.

As for the Hubs and J, I think they too are happy with Bobby living with us. J adores his uncle. He sees someone who understands him (for the most part) and he has a few of his uncle's traits. The Hubs is one who loves to talk about the bible and faith in general, and Bobby is very much interested in that.

I am looking forward to seeing life as it unfolds. I know I still have much to learn from my older brother, and I hope I can teach him some as well.

Early Morning Autism Musings

It's after five in the morning. Two kittens affectionately known as the Zombie Twins have battled to the tired and are now asleep on my legs. A restless Baby Bear is slowly falling asleep on the other side of my bed after being up since at least three AM and playing musical beds and gigglepalooza in the kitchen. Those are two of his favorite games to play when insomnia strikes. There is nothing inspiring in the kitchen, he was simply avoiding sleeping in his own room and not really wanting to settle down in mine. This is the life of autism that I've come to know lately. This isn't the first insomnia inspired post, and likely won't be the last, either.

We have been working with a caseworker in order to get J qualified for a waiver that would free up money for some of his particular needs, such as a group or host home if he needs it, respite care (much needed), and maybe someone to come into the home to help with his daily care. My dream? Someone who could take the night shift so I'd be more able to manage his day time needs. We aren't so sure that would happen, but as I've said, it's a dream.

We have had well meaning doctors and friends, and even family at times, encourage the Hubs and I to think about placement for J. I will admit that there have been times that something like that would be a blessing. But when it comes right down to it, neither of us want to face that aspect just yet. I know I don't. A chance for J to have community access (translation: day program that gets him out of the house and has the added perk of excursions to restaurants and activities) and respite when we all need a break, yes. Someone else caring for my child 24/7, not. Not yet.

Do I have a problem with other families who choose the option of group homes or host homes(akin to foster homes, but for adults with special needs when a group home isn't suitable, the person cannot live on his own, and family cannot or will not provide care)? Not at all. For a variety of reasons, that conclusion is reached. None of us know what tomorrow holds. The Hubs and I certainly aren't getting any younger. Great health isn't always going to be there. We won't always be there, much as I hate to think about that. And family can't always be counted on to pick up the slack and take in an adult with special needs. These are things that I think about when I'm up nights.

Speaking of my young insomniac child, sleep has finally found him. Dad will need his own rest once he comes in from work in a few hours, so it's time for me to try and get back to dreamland. Have a good morning.