Friday, December 30, 2011

Is it 2012 yet?

I just finished a long walk with Daniel around the neighborhood. I tried to breathe a little more deeply and let some of the chaos of the past couple of weeks go. It's been good, not so good, and at times a bit ugly.

First of all, thank God my parents have been here since Thanksgiving. I don't know how we'd have survived without them. We'd definitely be less well fed and the house would not be as organized. I love those two with my whole heart and every cell of my being! Not that I'm dramatic or anything!

Both of my kids had birthdays in the past week. Those were good days. Celebratory. Fun. I now have both a 16 and 13 year old living under my roof, and I'm about to hit 50. Let the good times roll!

On Christmas day we went over to pick up Rich's mom who lives alone since her husband of 64 years died this past August. She didn't answer the door, and the newspaper from the day before was still outside. Not good.

I yelled through the mail slot and heard her weakly say, "I'm coming," just as we got the stubborn key to turn in the lock. She was on the floor in her pajamas, and had been there for awhile.

Long story short, she was hurt, but not badly. We ended up calling rescue and having her admitted to the hospital where we found out she has a few issues that need immediate attention. Her rotator cuff is torn, and she's a little more confused than usual.

After a few days as an inpatient, she was transferred to a skilled nursing facility for physical rehab and nursing care. The main point that I must relate about all of this is that she is one tough, kind, positive lady. She's thankful, polite to all, and she does not complain. I could learn a lot from her. When I think of how well she's handled all of this, it really tears me up. I love that woman.

So, you can perhaps imagine that life has kicked it up a few notches lately. Daniel is great, he got over a cold in two days time and only a few nebulizer treatments. Melody took a little longer to get over hers, and I stayed healthy through it all. My mom and dad are strong like bulls, even though they have a lot of pain to deal with at almost 77 years of age.

We have a few more nights together, then we'll all be back to our old routines. For now, I'm focusing on ringing in 2012 with as much chutzpah as I can muster.

Here's to all of you out there struggling, yet having fun and making this crazy life work one way or another! If I don't post again until then, Happy New Year!

Tuesday, December 27, 2011


My daughter turned 16 today. If I could choose to help her learn just one thing, the above would be a pretty good choice. Truth be told, she teaches me more than I'll ever teach her. She has been one of Daniel's constant companions and best friends. Love, love, love that girl. We took a day trip with my mom to Cassadaga, Florida.

My mom and my daughter.

I am quite possibly at my nerdiest in this picture. It's one of few taken with my daughter today, so I'll bury my ego and include it here!

Friday, December 23, 2011


Daniel unwrapped the new iPad today, and his big sister helped with selecting the first few apps to get him started. Cool coloring app, and one specifically for autism that involves cause and effect. These were taken at the end of a long, very fun day spent in St. Augustine. He was tired, but attentive.

He (and I) are very lucky to have her to help us with the technical stuff. Here's to big sisters, Mission: iPossible and Daniel's thirteenth birthday!

Sunday, December 18, 2011

What keeps you going?

What is it that keeps you going as you care for your child full-time? Part of my inner pep talk comes from a book I read when Daniel was a baby, Changed by a Child, by Barbara Gill. When I'm really tiring out and starting to wonder how I can keep up, I think of her words.

She writes, "The physical acts we perform for our children easily become tiresome chores. Our son is seven and we still have to dress him; at fourteen we are helping with the shampoo, the bath, putting the special lotion on the very dry skin. He is well beyond age one and we are still feeding him and will be for years to come..."

"There are days when we think we cannot do another feeding or give one more bath. And then there are those moments when we give ourselves completely in response to our child's need...We know the intimacy of placing food in another person's mouth...We are not just putting on a shirt; we are consciously touching another person with love. When we surrender ourselves to these acts of physical caring, we experience love; we are healed and made strong."

When I hear him calling me on a Saturday morning and I'd really rather lie in bed awhile longer, that passage often comes to mind. Surrender. When I give up my ideas of how things "should" be, or might have been, or how much better or easier someone else has it, I can get into the zone. He needs me. He needs me every single day in very basic, life sustaining ways. I don't want to glorify his disability. Yet I also want to shine light on how beautiful our relationship is. It's a balance I'm aiming for.

I could easily let my thoughts overwhelm me if I dwell too long on just how dependent Daniel is on me. I am responsible for all of his physical routines such as eating and bathing as well as moving and lifting him. I support him financially. My job pays the bills, and the little I get from other sources wouldn't even cover a months worth of diapers and food.

It's not good to be without a back-up, but that's where I am right now. I have a little bit of state help in the form of a personal caregiver who enables me to get out the door in the morning for work before his school bus comes. If he's sick, I'm the one who has to stay home and miss work. The buck stops here every single time. That's ok, and yet it's not. I know I have to build a network and have supports in place. That's a topic for another post, though, and one I've touched on before.

Today I'm just grateful that I read that book when he was so small. It really affected the way I frame the experience Daniel and I are living. Is it stretching things to say that it's a privilege to be so enmeshed in caring for him? I don't think so.

So, back to my original question. It's one I really want answers to. What is it that keeps you going?

Friday, December 16, 2011

Thank you, Mission: iPossible!

When I started this blog my first entry was about communication. We were beginning to try a new picture system in school last spring, and I posted some photos of Daniel attempting to use it.

The picture book turned out to be too complicated and cumbersome. Even I, with somewhat normal dexterity, had trouble finding the page and picture I was looking for. We bagged it.

Then we started private speech and language therapy. Daniel's therapist suggested an iPad. Hmmmm. The cost of one is pretty steep. I told Dan's dad to save any Christmas or birthday money he receives for him (Daniel will be thirteen on the 23rd) and that I would do the same. I figured we might be able to pool enough to buy him one for his birthday/Christmas present.

Then I stumbled upon a blog that was giving away iPads. It's over here: Mission: iPossible

I entered. There was a two week wait, after which a random generator picked two winners. guessed it! Daniel won! I'm very excited about the potential that the communication apps have for him. It's also really good to end the year on a positive note like this.

Thanks, Ken, Heather and Mission: iPossible! Stay tuned for stories and pictures of Mr. D and his new state of the art communication tool!

Tuesday, December 13, 2011

Road Trip

We loaded up the van and went to Gainseville yesterday. Destination: The University of Florida and one of the country’s experts on Angelman Syndrome.

The trip started in the pouring rain. As I lifted Daniel into his grandpa’s van, I caught a whiff of something. Then it was back into the wheelchair, and back inside for what would prove to be a fortunate bathroom break.

Thirty minutes into the trip, I realized I left his bag with his Pediasure, diapers, wipes, cups and bandanas sitting in the garage. Oops. Do we turn around? Do we wing it? We chose to keep going.

Daniel is a fussy eater. He prefers Pediasure from a straw, but eats lunch at school everyday. I’m always amazed that they check “ate 100% of meal”. But apparently he does. So, when we pulled into KFC I had strong words for my boy.

“You MUST eat now, because I didn’t bring any Pediasure, and your stomach will hurt if you don’t eat something. It’s just like a regular school day. You HAVE to eat. No water until you eat, either.” That last part didn’t thrill him at all, and he reached and reached for the water cup. Drinking is one of his favorite activities.

Mean mama prevailed (I guess I'm not quite as ineffective as I think). He ate his lunch, drank a little water, and we were off again.

Parking was fun. We went to the wrong garage and the wrong building. When we realized it, we had to move fast (in the rain) through three parking areas and into the right clinic. This involved my 76 year old father helping me lift the wheelchair with Daniel in it up four stairs (not four flights, mind you, just four stairs. Still.) We made it to the check-in desk five minutes ahead of time.

Dr. Williams came in wearing a mask since he’s battling a cold. I thanked him for not sharing his germs with us, and he proceeded to go through the list of tests that Daniel’s had done in his almost 13 years on earth (this was after we saw the nurse, followed by the nurse practitioner).

The doc left the room to confer with his NP, then came back with his pronouncements. “This is not Angelman Syndrome. He doesn’t have the Angelman gestalt. His main characteristics seem to be severe growth retardation and autistic behaviors. It's definitely genetic. Have you had the microarray analysis done? No? I’ll write a script for one and it may show some chromosomal deletions or duplications.” He talked some more genetics talk, and then we headed to the lab.

We found some milk for him to sip while we waited. The technician looked for a vein and tightened the tourniquet on his arm. Daniel suddenly grinned big. Is he enjoying this whole debacle more than me? Then he passed gas. Loudly. Forcefully. I guess that’s what he thought of the whole business.

Tuesday, December 6, 2011

Communal Living

I've been researching the idea of disability communes, aka intentional communities, since a couple of posts ago. I sort of like the idea at (links aren't working right now, sorry), but it's designed for families whose kids have mild to moderate developmental disabilities. I would love to see something for those of us whose kids are in the severe range.

I'm wondering who else out there would be interested in a living arrangement that includes entire families who have a severely disabled minor or adult child. I'm envisioning something like a large area of land, maybe several acres, with separate cottages and possibly a common area for meals.

Does this ring anyone's bell, or do I need to get my head outa the clouds?