How to donate

Make tax-deductible checks payable to: Help Hope Live, with "In honor of Cash Burnaman" in the memo section

Mail to: Help Hope Live, 150 N. Radnor Chester Road, Suite F-120, Radnor, PA 19087

For credit card donations, please call 800-642-8399 or visit helphopelive.org (enter Cash Burnaman into the Find a Patient field.)
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Wednesday, June 29, 2011

Not 4 eyes, but 8 eyes

Work is super busy.

Hey, we have a house! We'll be living in a 3-bedroom, ground-floor unit at the Vinings in South Carolina starting September 1. It's great to have that settled, but boy is there alot to do before then.

I bought Cash his third pair of new glasses in the last 2 months today. The first pair was Medicaid-approved and broke almost immediately. The second pair I bought online for cheap and they don't fit quite right. Today, we ended up with new sturdy glasses for $225. At least they had better be sturdy.

Tuesday, June 28, 2011

Lots of learning

Cash is at the Early Learning Center today - he's having some full days at daycare so that he can have time interacting with other kids this summer. He was clearly interested in the toys, but had to put on a show about me leaving. He whimpered the whole 30 minutes I was there. His teacher Casey was great, though, and I know he'll be fine.

Talked with Karla Kuban today about the Wild West Show. It sounds great - I hope it's a fabulous success! Also, this weekend Ann Larson from the Snowmass Sun took our photo for the newspaper and Cash got a new western-style vest. While we were in Snowmass, we looked at the Ice Age mammoth bones they found there last fall. Cash was very cute running around the discovery center.

The last two nights he has fallen asleep with his head resting on me. I love the way he feels and smells.

Friday, June 24, 2011

We're Wild

I just finished being interviewed by the Snowmass Sun for an article about the Wild West Show. Woo! It really sounds like a great event - there will be a Pioneer Village with craftsmen, a heritage show, and music. I think this event is a great fit for Change for Cash - Cash is a little cowboy, of course, what with his horseback riding. This is just such an amazingly kind thing for Jim Snyder to do. I feel so much gratitude!

Thursday, June 23, 2011

Very happy, actually

Wow, I just noticed my posts have been a little dark lately, which is weird because I've actually been in a very good mood! Cash is doing wonderfully, stuff has calmed down with Josh, and I'm excited about the move. I think I've been trying to tackle more serious subjects in the blog, which is fine, but it doesn't really reflect that we are enjoying the summer alot.

So!

Challenges

This morning Cash looked in the mirror and pointed to his nose. It was very cute. He also signed "sleepy" this weekend, but I can't get him to repeat it.

We had dinner with Ariana last night. Cash started out shy, but by the end he was giving her flirty smiles. He is spending a couple nights with Gran and Pop this weekend while I go to Vail to see Ali and Keri (my best friends from when I was 12). G and P had better watch out because Cash is a terror these days - zooming around, into everything, demanding attention.

Ariana told me something that creeped me out. She mentioned someone who reportedly said she doesn't hang out with me because she "thinks it would be sad for Stephanie to hang out with normal kids". Yikes. That just feels gross to me. While I certainly sometimes struggle with being sad about Cash, hanging out with my friends makes me happy. The comment freaked me out because I wonder if other people think the same thing, and really I don't think it is about me, I think it is about their own comfort level. Cash and I are not pitiful. If seeing him makes you uncomfortable or feel sorry for us, then that's really about you, not us. Everyone has challenges - ours is maybe particularly sad, or maybe not. Is it really sadder than people who face degenerative illness, people who lose a spouse or a child, people who can't find a job? We're actually fine and mostly happy. Just like everyone else.

Wednesday, June 22, 2011

Ooh

A wonderful opportunity has come our way - Jim Snyder of the Snowmass Rodeo has offered to donate the proceeds of Snowmass's Wild West Show to Change for Cash! The Wild West Show will be July 9th and 10th at the Rodeo Grounds, and it sounds like tons of fun. I'm particularly charmed because of course Cash likes horseback riding, and so I think he'll enjoy the whole scene. We're trying to find a cowboy hat for him.

This is so kind and generous of Jim. It just feels to me like a little miracle that came out of nowhere...

Friday, June 17, 2011

Reality

There was this little girl who came by my office yesterday with her mom, who is a member of the summer staff. She's probably about 2 and she was very cute. It struck me as I talked with them how different Cash is - I mean, I KNOW he's slow and his behavior is autistic-y, but I usually just deal with him as he is. This was one of those moments that I didn't have my guard up and got surprised by how normal kids act. It sucks. It makes me sad, even as I am so happy for his recent progress. He's been doing amazing new things lately, but he's still my funny little guy. I wish ... oh, I wish ... but there's not point in wishing. I've just got to deal.

In a happier vein, I nearly ate Cash up yesterday with kisses. He is delicious.

Thursday, June 16, 2011

Tuesday, June 14, 2011

Touching

Last night our neighbor Shelley and her little girl Hannah came over. Watching Cash interact with Hannah made me think a little about Cash's autism. He likes kids - he was thrilled to see Hannah - and he will do some interacting around a toy. But Cash was reluctant to hug Hannah (who he likes very much) and he pushed her away almost immediately. I pester him with kisses and hugs constantly, which he seems to mostly tolerate. Sometimes he seems to like it and seek it out, and other times he pushes me away too. I know normal kids don't always want to be bothered, but I just wonder how Cash feels about touch. He likes to be tickled, he likes to be carried, and sometimes he likes to be cuddled, so I know he doesn't object to all touch. But hugging seems to be hard for him - he has hugged me, but I can just see in his eyes that is uncomfortable for him.

I don't have any answers, I'm just musing. I insist on touching him all the time, and I always have, and I guess I believe that even though he sometimes moves away, he appreciates the affection from me. I'm sure that it makes him feel loved, just like the rest of us. Plus, picking him up when he is crying consoles him and he likes to snuggle in the mornings. But he is also obviously not thrilled about other touches. I wish he could share with me what he is feeling.

Monday, June 13, 2011

More school

Summer school started today. It lasts two weeks, then Cash will be at the Early Learning Center daycare for two days a week. The rest of the time he'll go to his therapies and hang with Gramma. He needs quite a bit of attention and stimulation these days, so I think it is good he'll continue to have school and interaction with other kids all summer. He wants to play, play, play.

Cash's dad Skype'd him yesterday and they chatted for a few minutes. Josh is traveling around the world.  

Thursday, June 9, 2011

Mug shot

I gave that guy a haircut last night. It is challenging to cut someone's hair who does not stay still.

We spent nearly two hours at the post office this morning trying to get Cash's passport renewed. There was a family of four who did not speak the english so good ahead of us and then when it was our turn there was a problem because they want both parents present. Since I don't even know where Josh is, that presented a problem. Hopefully we found a solution and we'll get Cash's new passport in a couple of weeks. Here is a picture of his picture (and thus the haircut can also be admired):

Wednesday, June 8, 2011

Don't go, Mommy

Usually Aunt Dianne or Mom drops Cash off at PT, and by all accounts he approaches those appointments with equanimity. Right now, though, I am dropping him off, and this morning he started to cry before we even got out of the car. Once we got in, he was wailing and signing Mommy. This is not new per se - last summer he got upset whenever I dropped him off and he went through a crying phase at school two years ago - but it is still interesting. I remember when Cash was little and other mothers would talk about the difficulty of leaving their kids at daycare, and I semi-enjoyed, semi-regretted that Cash was always so calm. But that's over. And the crying is definitely a show for me - he doesn't do it with AD or Mom, and he stops as soon as I leave. It's hard to leave because I want to reward him for showing his feelings (and because it is darling having him sign Mommy), but I also don't want to reward acting out.

His walking has progressed to a new stage. He really PREFERS to walk. Now he tends to scoot or hop only to get to somewhere to stand up or because he is tired.

Monday, June 6, 2011

Time for sunscreen

We had a really nice weekend - Cash spent Saturday gardening with his Gran and Pop while I hiked Difficult Trail and the Ute, and then on Sunday we went over the pass and had ice cream at Big K's in Buena Vista. Lovely weekend.

Cash is doing well. He threw a huge tantrum the other night because he wanted to mess with the radio and he could not reach it. He eventually settled down after I took him to read a book, but the hissy-fit was complete with crying, whining, and throwing himself around. Good for him, I say - assert yourself.

I cried while looking at Aspen from the top of the Ute. It's so hard to leave here.

Friday, June 3, 2011

The Graduate

Today was preschool graduation. It was adorable. The kids all wore caps and gowns and sang a little song for us before getting their certificates.

Cash was unimpressed with the whole process, but he behaved well - once he got up to walk towards me - and he seemed pleased to see everyone.

His teacher Elizabeth has been so wonderful this year - we are going to MISS HER! Actually I'm going to miss everyone in Special Ed in Aspen, and also his class. They are a very sweet group of kids.

Cash starts summer school in a week, but in the meantime:

Thursday, June 2, 2011

The cuteness is strong within him


Cash was unreasonably cute this morning. He's lucky I haven't eaten him.

It's difficult to enumerate all his changes lately - many of them are subtle. And if you saw him, you'd still recognize that he has obvious problems. But if you spend much time with him, the improvements since India are impressive. Not just the walking and signing, but also the interaction with people, this feeling of him coming into himself. He is often spunky and mischevious, often whiny and willful. He is usually responsive when you talk to him, and sometimes you can catch him eavesdropping - you'll be talking about driving and he'll be sitting over there signing "car". The autism is in some ways more apparent now than before, because ... it's hard to explain. But it's like you know he can do something, but he won't. Or how he now consistently waves hi and goodbye, but he doesn't like to make eye contact when he does. On the other hand, he wants more attention now than he used to and he often wants you to participate in his play.

He's just a weird, wonderful little mystery.

Tomorrow is preschool graduation day.