hide-n-(sensory)-seeking

Caring for an aging and ailing family member is immensely hard. It consumes so much energy, attention, and yes, money as well.  Caring for a child with special needs can and often is just as immensely hard, and is often a much longer journey. While I primarily focus on caring for an aging parent in this post, almost all of the points apply to caring for a child with special needs as well, and the accompanying printable list is just as useful for these parents as well. Support can be a difficult resource to find at times, and respite even more elusive. It has been a year now since our role as full-time caregivers to an elderly parent ended. We have still not fully recovered. We are still floating in bits and pieces in the aftermath of a storm that pulled our family in so many directions at once we felt parts tearing and then smashing into each other again. For a family who has some time to prepare for a loved one's illness, it can be incredibly hard to care for tha...

The problem with a long absence is trying to figure where to pick back up and what needs caught up. It's far too overwhelming to go into detail the events of the past few months, so I will fill in the most important gaps.  First off, Victor's dad passed away at the beginning of February. It was sudden and unexpected, but peaceful, for which we were grateful.  Obviously, adjusting was an interesting process. As was how to go about explaining the concept to Kit. I will write a separate post on that.  While it was sad, there is also a relief that comes when you know a person is not going to continue to deteriorate in health, body and especially in Grandpa's case, mind.  Kit struggled for a long while with the change that comes when a person who was in her life every day is suddenly not there any more. She was not especially close to Grandpa, they sort of lived around each other in the same house rather than together. He was a constant presence nonetheless, and some of...

By noon on Monday I already knew that my school plans for the early part of the week were simply not going to be happening. Not because of anything negative, I could just see the resistance, the desire to do anything else. And when that manifests in my kiddos, I take it pretty seriously, because, after all, our "school" involves a great deal of fun, so when they are drained, it's a sign that they truly need a break. So I gave them one. We took the whole week off, instead of just Thursday and Friday as I had planned. They loved it. Monday afternoon was spent mostly taking turns playing on my computer. I made cake. Tuesday the kids got new bikes. We had been waiting for the weather to cool, and the time felt right, and the day, sort of perfect. They love them. Grace is still trying to bravely learn to balance and ride without training wheels, which is going to take some time, but she's working very hard at it. Zak is in complete sensory heaven on a bike. I had forg...

It may seem odd to choose that word to describe this past week, but it has several meanings for me. The fact that I have been piecing together eight of the ten blankets that I am behind in making for new (and some not so new, more like 1 1/2 already) babies is obviously the literal application of the word for this week. But those blankets and the thread that binds them together also hold illustrative value for me this week. The reason I am so far behind in making them is because the tapestry of our life ran into some huge snags and snarls around the time several of these new babies were greeting the world. All my energies, all my attention, all my everything was being poured into surviving the last two plus years. So pulling out the sewing machine was not even on the checklist. Autism has a not-so-funny way of doing that. Of pushing to the fore, even when things are going smoothly. It's like being left-handed, in that one always is. A lefty  can learn to do just about an...

Today Grandpa insisted on picking up a bunch of stuff that Kit had scattered across the kitchen floor. Then Kit was offended that he had ruined all her hard work and promptly dumped a bunch more stuff on the floor. So then Grandpa picked it up. Then Kit dumped it out again. And again. And again. Finally, I recruited back-up. Zak ran Kit a bath and I quickly cleaned up while Grandpa warmed up his coffee (which was the whole reason he came into the kitchen 30 minutes before to start with), then wiped off the counters (pouring out my coffee which I was really not done drinking), and table, then had to warm up his coffee because it had cooled off, again. Things finally calmed down with Kit corralled in the tub, and Grandpa finally able to sit down and drink his coffee and read a good book (Grace's math book actually). Now he's watching March of the Penguins with Grace. Grandpa likes to add in interesting facts that the narrator leaves out. He's telling Grace that the...

Things are about to change around here again! This time definitely for the better. We are putting the finishing touches on Grandpa's new room, and if everything goes as hoped, he should be moved in by Wednesday at the latest. Here's hoping... That means we'll be back in ours ! Hooray!!   Yes, I do believe applause is in order!   It's been about 2 1/2 months since I last slept in MY bed. In MY room. It's been so long that I don't miss it any more. I've actually forgotten what my bed feels like. There is a long list of positives that will result from this new arrangement. But I will only mention four here today. First and foremost, everyone will have their own space again. This has been a large contributor to elevated stress levels around here, so I am more than relieved to have some designated private space again. A second and enormous benefit will be getting back the arrangement for putting everyone's clothes where they belong. No ...

HOORAY! OUR BILIBOS ARRIVED TODAY! Yeah, weird name... awesome toy! I was disappointed that I didn't get to see the kids open them. I was busy refolding clean clothes that Grandpa was pulling out of the plastic bin I keep Victor's extra clothes in. Grandpa gets confused about what is his and what is ours. I had just brought him his clean laundry and was starting to put it away in his drawers. He went to the bucket to get me more clothes that he thought were his and needed washing. He starts pulling them out of the bin, unfolding each item and laying it on the bed. The conversation went something like this: (Grandpa speaks with a heavy Spanish accent, btw.) "Okay, this is another one. It needs washed. Yes?" "No, that's Victor's shirt. Yours are right here. I'm putting them in this drawer." (Organizing drawer so similar items are together.) "No? This is mine?" "No, that is Victor's. Yours are here in these dra...