Guilty

Right now I'm sitting in my kitchen, feeling a little guilty. And it's because of my yard. Well, I also haven't walked the dog yet, and the house is a disaster, but one guilty step at a time.

My yard looks fantastic. It's green and lush and full of blooming flowers. We are fortunate to have a cool backyard. It's not huge, but it's big enough to run around in, or sit in the back of. There are tons of plants that I had nothing to do with because they were here when we moved in. Whats cool about it is that it's not totally uniform. There is grass in the middle that winds it's way around both sides and snake around the corners. There is a rounded bed next to our back deck that is full of a lot of plants and flowers going wild in a semi-controlled sort of way.There are more wild beds around most of the edges of the wild. So the green grass is thin in the middle, like a bone and bulbs out on the ends to the sides of the house. There is as much planted area as grass. And the grass looks fine because it's cut, but not because we do anything else to it.We are just not that into grass. We have some nice trees for shade, and some raised beds for vegetables. It has just been mulched, and though I hate the smell, the look is great.

The front is similar, in that there is some fine-looking grass, surrounded by rounded beds in the middle and in various round shapes around the perimeter. And again with some nice trees. The difference is that we have put some time into adding plants and flowers in the front. The back just didn't need it. It's all pretty picture perfect.

The problem is that I didn't have a thing to do with it. I didn't mow the grass. I didn't edge the beds. I didn't spread the mulch. Which is where the guilt comes in. Because I sort of pride myself on being a gardener, a play in the dirt and take care of the plants kind of a girl. Now, we also think it's important to have a once a year clean-up done by a landscaper, to get us going, and then we can do the maintenance for the rest of the summer. And that's what this was. But I still have guilt that it all looks so beautiful, and I, I didn't do any of it.

UPDATE:  Later the same day...we went to our local farm/farmer's market to get fresh local strawberries and smoothies (we've been sick and the smoothies sounded good on our throats). We also went to get plants for a big pot up front and a hanging pot. These, I will do myself. Found some plants for the big pot out front, and some bee balm, and fox glove for the yard (haven't had fox glove since Alaska), but no hanging plants yet. I have found over the past few years that I really enjoy arranging annuals in our big pots that sit out front. And I've done some that are great (and some just ok), so I'm always chasing the dragon for that perfect arrangement. I'll post a picture when I get her done.

Trying it on for size

I've been thinking of blogging. Dreaming of it, even. I think of posts when I walk the dog, when I read a good article, when I am frustrated with a situation in my life. I need an outlet. In the past, I think I have been scared to be too honest. I have limited the scope of my writing to protect myself, and my family. And I think a certain amount of discretion, or privacy is appropriate. But, I think being more honest and more open, gives me a lot more to write about. And my life is so full. There is a lot beyond having a son with autism. And while my life is certainly not miserable, I have been struggling with some things. And I think writing about them will help me process them and figure them out. Sometimes thoughts and feelings evolve through moments in life, through conversations, through time...

And I have been taking some time. But, one thing I hate is people who are enthusiastically happy, ALL THE TIME. I like positive people, but not the people who don't seem real because everything is always perfect and sunny. I don't believe them. I like the funny, sarcastic, melancholy folks a bit more. I like a friend I can gripe with and laugh with. Who will complain about her kid, or mock a silly parenting situation. And while I don't think I have presented myself as one of those crazy happy people, I have been careful about what side of myself I have shown. I think now, that showing some other sides of myself, particularly maybe the ones that make me nervous, or that I'm not so proud of will be, eventually, freeing. Kind of a relief. This is my new self medicating therapy plan. What do you think?

What goes up must come down

Sam is doing so well overall, and especially lately, that we were bound to hit a road bump. I'm surprised that I was so surprised by it. Sunday afternoon we went to Dunvegan Farm to check out a possible horseback riding scenario for Sam. I had chatted with one of the owners, who also lives on the property. They rescue horses, ponies and miniature donkeys, and do riding lessons with inner city kids, and other kids at risk for lack of opportunity who are surviving a tough life. The setting was ideal, in that although the farm is not specifically set up to work with kids with autism, Allison was open to it, and really wanted to meet the four of us.

We arrived in the late afternoon, and the kids barreled out of the car. We could easily see the horse barn and the donkey pen, as well as some chickens. I managed to find my way up to the house and introduced myself to Allison, and introduced Allison to us. I guess what I was so shocked by, which in retrospect I should have expected, was how out of control Sam seemed. Like the Sam from a couple of years ago, he ran all over, neither listening to us, nor having any real focus. After I had explained how much Sam loved horses to Allison on the phone, I was almost embarrassed by his seeming disinterest in them when she tried to show us around the horse barn. The running wildly and not listening continued throughout the visit. We did get a chance to talk to Allison, who was very calm, not at all phased, and mostly interested in learning about Sam, and thinking about what we could do to interest him and focus him. Max got to lead a sweet old horse named Abe out to the grass to eat, and the boys had lots of fun jumping on, and "riding" the vaulting equipment. There were baby ducks, and a zen goldfish pond, complete with calming Buddha statue(s).

Though Matt and I were moderately stressed by Sam's behavior, Allison couldn't have been lovelier or more open to the ramblings of our wild family. We agreed to meet again in two weeks, and she said she would think on a structure for Sam's visits, and tasks that would lead to rewards, so he would know what to expect. I think she envisioned him working up to riding by caring for the animals, which sounded great to us.

We adults discussed how it was a new place for him, and how, come to think of it, it often took him some time in a new situation to get used to the space before he could focus on what was expected of him. Thinking later, I realized that instead of it being the old Sam, it was the new Sam, in a new situation. We had widened his world so much, incorporating and making him comfortable with so many new situations and experiences, that we forgot what it was like when something was new for him. We expanded his life to the point where a whole host of things is normal and a part of his repertoire. He can go to the grocery store, go for a family hike, go swimming at the beach, get a haircut, go to the toy store, go out to eat, go on family vacations, and ride his scooter up and down our street without accompaniment (but still with close supervision). Going to the farm was level of freedom and lack of structure in a new setting that he hasn't experienced in a while.

The experience was successful for a couple of reasons. In our way of thinking, it was good for Allison to see Sam at his worst, because it could only go up from there. It also allowed us to see how far he has come, how high our expectations are for him now. And lastly, it reminded us that there is always work to be done with our boy. That things still don't come easily to him, and that new things take time for him to get used to and adjust accordingly.

All I know is that today was a good day for Sam at school, and he scooted up and down our street this afternoon. He did go around the corner to an adjoining street, but was easily convinced to come back. He balked at getting his nails cut (and that is putting it mildly) and reading aloud before reading to himself in bed, but he did both. And he was happy.

The night I outed myself to the PTO

Tonight I attended an end of the year PTO get together from Sam's school. The program Sam participates in is housed in a different elementary school from where we are districted for, so he and Max will go to different public schools in the same town.

Anyway, we hung out, ordered drinks and food, and then there was a short presentation to thank the PTO board members and coordinators. After the presentation of gifts and the responses, we had an impromptu discussion about volunteering, and how to get more people to be active in the PTO, and by extension in their children's school. A couple of people mentioned ideas for why people didn't volunteer and suggestions for how to overcome those obstacles.

I thought for a while during the conversation about why I was at the dinner, how I had participated in this year's PTO activities, and what kept me from volunteering more of my time. I thought for a while about how I was different from the other parents there, and about pulling the PTO Chair aside afterwards and sharing my thoughts privately. She had been nice to me and had been welcoming at the BBQ for Teacher Appreciation Week I had helped out with a few weeks ago.

And I listened to these women, who sounded as if they really cared about their children school, the Parent Teacher Organization, and how to make it better and more inclusive. These were smart women, who seemed to have a certain amount of empathy and emotional maturity. In some ways, they didn't seem that different for me. And I opened my mouth, and I used my voice.

I told them about my disconnect. About how I felt different from the other parents at school, because I have a child with special needs. About how I felt that my parenting experience had been so different from theirs. About how I managed children in two different schools, in three different classrooms (Max's class, Sam's typical 2nd grade class, and his sub-separate classroom.) About how it was hard to participate in an activity if it was something that my child couldn't participate in for whatever reason. About how his sub-separate classroom didn't have it's door decorated for teacher appreciation week (at least six teachers). About how I didn't know most of the parents in Sam's "typical" 2nd grade class, and how I only recently stopped crying at teacher conferences.

I explained how when I do participate, I have to explain how my child is different. Why I live in another district and have a younger child at a different school. About how thankful I am to have this kind of program in my town and in one of our public elementary schools.

I think the principal was there. I think they all listened. I know that the five moms told me then and approached me shortly after we concluded to let me know that they didn't know that I had a child with autism until I told them; that they didn't know that their school had a program like Sam's with a sub-separate classroom; that their child was in Sam's class and that they knew of Sam but didn't know he had autism; that they wanted to introduce themselves to me; and that they felt disconnected too, for various reasons.

I left feeling a little lighter. The night went differently than I imagined, but I'm pleased that I went. Pleased that I participated in the organization, and pleased that I shared my thoughts. The funny thing is, as you know from my last post, I feel so much better generally. Sam is so much better. Our lives are good and full and both kids are progressing rapidly. I think that being in this place that we are in now, were we love our boys and we look forward to the future, also involves some public outing. Of who we are and where we came from. It involves having a voice and using it, in a way that works for us.

He is so different

When I started this blog, I was looking for a space to share my feelings about living with my autistic son. I soon evolved into discussing his younger brother, and other things that interested me, but living with and parenting a child with a developmental disability was still the focus. When I look back, even a year ago, I am amazed at the change, in my son, my family and my life.

What has changed? (How big?) So much (So big!) ! Sam is still autistic, but he is older, and with his growth and accomplishments have come change for all of us. For example, when we moved here almost three years ago, we installed a fence around our yard and codelocks on both sides of all of the doors, for security. And by security, I meant the peace of mind of knowing that Sam could not escape and get hurt. Fast forward three years. Yesterday I sat in a beach chair in my driveway playing a game on my phone while Sam scootered up and down our street by himself. He can now get a professional haircut; go for a hike/walk that is not a loop and that he has not done before (we did a 5k as a family to benefit his school last weekend); got to the grocery store and help with the shopping and carrying the bags and putting food away; READ OUT LOUD (this one still blows me away); speak, in a voice that gets clearer all the time; write somewhat legibly; help me bake a cake (which we did today); find ANYTHING on the internet by typing into a search engine (Nazi teletubbies, yay!); swim underwater; ride a bike without training wheels; take a shower; and give the people he loves hugs and kisses at appropriate times.

I finally feel like I have a real relationship with my son. I enjoy being with him, and I no longer dread the weekends or times when he doesn't have school. We are able to go places as a family, hiking,swimming and snowshoeing in Vermont, vacationing near the beach on Cape Cod, things I truly never thought we would ever be able to do. He is a fantastic traveller. Apparently all of those years going to and from Alaska and the East Coast (and Southern California) really paid off. He enjoys spending time with friends and family, especially his grandparents, brother, and babysitters. He understands and enjoys birthday parties and holiday gift giving, and his first real party this year with classmates and friends when he turned eight last month. He is a beautiful, smart, happy, healthy boy and we are so proud of him for all the work he does eery day. It is not easy to be Sam, but he beings joy to everyone who knows him. In spite of his limited speech, he is beloved by teachers and classmates alike.

And the talking, oh the talking! There is not much I like more than to hear my sweet boy's voice. He reads a book aloud every night to me. He is affectionate, and loves animals, particularly poultry and horses. He still gets up between 4-5:30AM, so we are looking forward to him feeding the chickens when we move to our farm house.

As for the rest of us, we are all settled into our new life. Max is obsessed with Star Wars and legos and anything interrelated, takes karate, and has also learned how to swim. He has made some good friends, and is thriving in school and at home. Matt has been very busy at our new house working in the barn and building a beautiful workshop. We have secured our first permit, and demo begins this week. We have no idea how long the renovation will take, but the sooner we start the sooner it will be done! Big plans for the summer include horseback riding for Sam, camp for Max, and a few big trips: to Alaska (me and Max), Europe (just the grown-ups for our tenth wedding anniversary) and a family vacation at the beach.

That's not to say that everything is always hunky dory. Being five has been as challenging for us as it has been for Max, and we are always working on the blood sugar/behavior balance (more food at key times equals better behavior). Max will continue to receive some support with fine motor skills in kindergarten next year, and apparently he is sensitive, just like his mama.

Sam has good days, great days, and days where he struggles, but the progression is still strongly forward, and he has a lot of people rooting for him. Matt and I have made some great new friends, and enjoy seeing our old friends now that we are baclk in the lower forty-eight. Also, we have managed to stay in touch with some current and former Alaskan friends, which helps to keep us grounded. The future looks bright for all of us. I am also thankful for wine and happy meds.

Secret to success....

Today was Day 1. It's not my New Year's resolution, but my plan each day. To be active as much as possible. It took me until 10AM to motivate but then I went for a walk. I made sure my skin was covered so I didn't get a case of the itchies. And I "borrowed" Sam's iPod and listened to a podcast of This American Life. Perfect amount of time to walk! The sun was out, and I was involved in what I was listening to and my skin was not itching from the inside out. Yesterday I walked to pick up LB at school and by the time I got there I was so itchy I got a ride home from his van driver. So today I planned better and it worked. Sweet.

Post vacay recovery

Just got back from vacation in California last night. We had a great time, although the flying was exhausting despite the kids being awesome. It is SO much easier now to travel with the boys. No longer the anxiety producing nightmare it used to be, and no more packing tons of stuff to take with on the plane. Both kids take their backpacks with some books, snacks, and toys, and M takes the iPod, ipad and DVD player. And headphones. I take my kindle, purse and some magazines. We sat in the Samsung area at the Dallas airport, with comfy mod leather seats, dimmer lighting, and lots of plugs. Also right next to Starbucks.

Kids did a lot of climbing around at Joshua Tree, swam in the pool and Sam went for bike rides on his two wheeler! Everyone went for rides on the golf cart, and we saw all the African animals at The Living Desert, along with the sickest model train set-up I have ever seen. M and I went on a date to Okura, our favorite sushi place, and a nice lunch at the clubhouse out by the pond looking out at the mountains and desert. The kids were so good at the pool I slipped in the hot tub while we were there. My parents friends were lovely and welcoming for Thanksgiving, as usual, and as usual we stayed longer than I thought.

It's nice to be home, as the day before we left we closed on our new farmhouse. It's from 1730, has a barn, almost three acres and is around the corner from our current house in another world sort of way. Today was the first day we got to take the kids over to run around. They were totally out of control, but fortunately we have some work to do on the house, so they'll have time to get used to it. Dreams of chickens and large gardens dancing in my head. Jet lag recovery is going well, and will be even better tomorrow when the kids go back to school. Hanukkah is around the corner, and Christmas soon after, so the Christmukkah shopping will begin shortly.

Waiting for Lovely Neighbors to bring dinner for our Sunday night ritual. Remind me to tell you about LB's birthday party coming up in a few weeks...