I'm Back

Sorry for the hiatus, but M was in Alaska for a week, and after getting up at 4AM for nine days in a row, it was all I could do to cope, let alone write. Actually, I had my moments, but overall, it wasn't too bad. I had a good amount of help and adult interaction. It helped to simplify my activities, a.k.a. do nothing I did not absolutely have too. That said, I did attempt a couple of crazy things, including taking both kids to Pump It Up for a party with the Family Autism Center (Sam cried the whole time and The Little Person threw a huge fit when we left), and went to an autism workshop one night put together by our pediatrician's office (got lost and after arriving an hour late, figured out that I was actually a half hour early, so I helped set up). I skipped The Little Person's swimming lesson to nap on the couch while he watched TV, but I did take him to the movies to see How To Train Your Dragon in 3-D on the night my parents watched Sam so I could sleep in past 4AM (7Am never felt so wonderful). We got dinner and had a date night, though I wouldn't let him sleep with me and I didn't put out. Then there was the night The Pugs came over, with their person, my Trainer, Mer. The kids had a great time chasing the dogs around the house until they went to bed, and then Mer and I had dinner and pomegranate martinis. That was a mistake. They were a little, how do you say....STRONG! So, I was hurting a little the next day, and that was the morning of the Pump It Up party. Also, there was some unidentified stuff in my bathroom that made me want to call CSI, but that's another story.

So, M got back Thursday night, and then after the ceremonial Handing Over Of The Children, I slept a little, worked out and got some beauty treatments. Friday afternoon we left for an overnight in Boston to celebrate M's birthday. The kids were in good hands, with Babysitter Extraordinaire (BE) as our Christmas present. The trip was excellent. The first time we've ever gone and stayed in a nice hotel together. Now we may have to do it every year. We stayed at The Fairmont, Copley Plaza, and got bumped up to the concierge level with a view of Copley Square. The room was beautiful, and the staff made us feel like royalty. That night, we did some shopping and wandering around before dinner. I got some fabulous boots at Fluevog, which I wore with my dress to dinner. We took a cab over to Oya, which I had made reservations at a month before. It was incredible from the second we walked in. It looks like a hole in the wall, down some random alley near Chinatown, and there was only a small sign to give you a clue where the restaurant was. The door was a big industrial door, and when you walked in, you would never have believed you just came in from the alley. It was like a little hideaway. The staff was great, and we had about 12 courses of mini plates (an Asian version of tapas), with mostly nigiri sushi and sashimi. Good wine/beer and elegantly plated. We were well sated, but not overstuffed. It was everything I wanted it to be. Note: it is not cheap, but well worth it for a special meal.

We slept great in our king sized bed, and had a leisurely breakfast upstairs at the hotel, and went to do more wandering. We got coffee and went to The Apple Store. There was a line around the block, but if you were not purchasing, you could go right in and try out an iPad. So we did! It was pretty fun to play with it. Then we walked down Newbury Street and looked for a lunch place. We ended up at Stephanie's, which was great. Afterwards, we got ourselves together at the hotel and started home. All in all, one of the best times we have had in a long, long time. Happy Birthday sweetie!

Yesterday we hooked up with a friend who was a VISTA volunteer with me our first year in Alaska. She and her family were camping in Middleboro, and stopped by on Sunday morning with a LOT OF DONUTS. The kids all played well, and we had a lot of fun catching up and meeting her husband, who was a good six inches taller than M (Mis 6'2"). W whiled away the sunny afternoon gardening and playing in the yard, and then had The Grandparents over for a BBQ. Pretty, pretty good weekend. Somehow, though, I feel like I need to recover! I got up at That Hour with Sam today, and had to nap this afternoon. This is the first day The Little Person has not had a fever since Thursday, so he went to school, swimming and then Grandma's. More playing in the yard with Lovely Neighbors, and it's almost time for bed. The big goings on this week are Sam's cavity getting filled at the hospital on Thursday (they are going to put him under for the procedure). So that will be fun. Good times...

The Home Stretch

Ok, a little more than 48 hours left to go in single parenthood. Unfortunately, the last part is going to take the most energy. Today is easy (so far), but tomorrow The Little Person has no school and Sam has a dentist (another familiarization visit). Then, Thursday, M gets in at 9:30AM. Sam has a speech therapy appointment at Children's at 11AM. I will need to go pick him up at school and drive the almost 40 minutes. Fortunately, Sam's teacher, Mrs. H will be with me. Since it hasn't worked out the last two times we've tried to go, I am a little anxious. Hopefully the Speech Therapist will be on the premises. Then M will be home, which is great, but he will be jet lagged, and I will be outwardly sympathetic and inwardly crabby. We will try to recover by Friday when we are having an overnight in Boston ALL ALONE! I hope I can do more than just sleep on our time away.

Last night was Passover at my parent's house. The dinner was great and the company couldn't be better (grandparents and lovely neighbors), but The Little Person was being, shall we say, challenging? And I feel like all I did was yell, and look for Sam. This morning I snuggled with both boys in my bed, and then I took The Little person to school in my pajamas (the glories of the Drive-By-Drop-off). Now I am making breakfast (matzoh brie) for my Mom who is blessedly not making me come over to help put things away from last night. Pajama party!

Where do all the bookmarks go?

Every time I use the MacBook I make Bookmarks of pages I visit regularly. Except, I have no idea where they go, because when I try to bring them up, they don't exist. Does anyone know where Bookmarks go on the Safari browser that Apple uses?

Today is Day Three of being Home Alone, but Day Four of getting up at four. I'm getting a little tired. So my parenting plan tonight, while Sam is having a sleepover at my parents' house tonight so I can sleep in tomorrow, is to take The Little Person to a movie. We are going to see How To Train Your Dragon in 3D. That way, I can be with him, without being with him. Then we come home, and he goes to bed. I may go to bed then too. Last night babysitter Extraordinaire was over and after putting the kids to bed and dinner, we stayed up talking until eleven. And then I read my book for a while (The Girls Guide to Hunting and Fishing). So, not exactly doing great on going to bed early. And then Halitosis Boy (I think the cavity is making Sam's mouth stink), got up at 4, like normal.

Tomorrow, I am going to (hopefully) sleep past 4 and go to Sweaty Yoga. Then I have arranged for M, the woman I work out with (notice how I am uncomfortable saying My Personal Trainer?) is coming over with her (two) pugs for a visit. I haven't told the kids yet, but it is part of my little plan to get them addicted to pugs and tell their dad they want a dog. Plus, I have been wanting to hang out with M, and thought it would be fun. The on Sunday, The Boys and I are going to Pump It Up for a party with the local autism organization. I plan to arrive after the training video and leave before the pizza. Then I plan to pawn off The Little Person while L is with Sam (I even have homework for them to do!) and just breathe. Or nap. Sunday afternoon/evening a friend of mine from high school (but who I did not go to high school with) and his wife are coming over to play. The kids love them, so that should be good.

Monday, I have to try to get the school to send one of Sam's teachers to a local autism conference hosted by The Doug Flutie Foundation. There is a presentation on Assistive technology and Speech Generating Devices (SGD's) and since nobody at his school (besides his one-on-one teacher) has any experience in this area, I think it would be good. I'm all for training. I should have suggested they send someone to the Autism Symposium we went to with Temple Grandin. Oh well, next year.

Also, next week is Dentist Appointment #2 and Speech Therapy at Children's Appointment #1. Good times. Gosh, now I feel like I need to make a To Do list for myself. I'm starting to feel a little verklempt (it's a Yiddish expression, look it up). I still need to pack an overnight bag for Sam, and new clothes for The Little Person who Didn't Make It To The Bathroom at Grandma's house. I'm sure he's walking around in my Dad's XL t-shirt right now.

Next up, processing all the conferences I've gone to (I went to a workshop last night for parents with kids on the autism spectrum), and start implementing more of the ideas. Also, working on a haircut for Sam, who looks like a cross between a wood sprite and a character from Annie. Till then, Chow, Shalom, Salem Alechem, Sayonara, Adios, and Domo Arigato. Have a great weekend.

Day One

I have exactly 15 minutes to write this post before the kids go to bed, and as I am alone, you can bet your ass they are going to bed on time tonight. M is still en route to AK for a week of business and hopefully skiing. He left at 6 this morning, so I've pretty much been alone all day, except...Gram and Pop are back! Gram came over around noonish and took The Little Person until after Sam got home, so I had a few hours to relax. I didn't get anything done, but I did catch up on Real Housewives of New York, a guilty pleasure for sure.

Back at the ranch, things are going well. Had a little tune-up from The Therapist, to remind myself that I'm not insane and things really are okay. Actually, after we talked about my worries for a bit, I spent most of the time updating her on all the great things the kids have been doing. Plus, she told me about a new restaurant in Somerville, MA. I was telling her about my great experience with M at Solea, in Waltham. Love the tapas.

Took Sam to his first dentist appointment. It was just a first step in what they call "Familiarization" visits, so we'll continue them once a week for a while to get him used to the office, the dentist and all that they do there. Unfortunately, in the less than 3 seconds Sam let her look in his mouth, she things she spotted a cavity, in a place which may mean there are more (between his teeth, and big enough to see at a glance). I think for that, we will take him to a children's hospital (Franciscan), where they will put him under and they will fill the cavity(s), take x-rays, and do whatever else they need to do while he's out. I know it sounds harsh, but considering the time and trauma of getting him to the point of being able to do it easily in her office, it seems like the best choice. Hopefully, they can put some sealant on his teeth while he's there to prevent future cavities. I feel awful that I let this happen, but even though he is willing to brush, he mainly goes across the front, and anything else is a battle (one which I tackle, but obviously not well enough).

Speech at Children's for Sam continues to be postponed, this time until next week. And even then, it's not totally consistent. To be honest, I am not thrilled with the whole process there. After having had the appointment postponed twice, once after we had confirmed the appointment the day before and actually physically shown up for the appointment.

I have already broken my word twice now. Originally, I said I had 15 minutes to write this post, anf that was at 7:15PM. Now it's 9:54PM, and I said I would get into bed at 9 and try to be asleep by 9:30. At least I got into bed around 9:40 and i am no longer watching TV. Problem is, I'm not Sleepy Tired, and I don't feel like reading. Cruising the internet it is. Nite.

In My Pajamas Before 7PM

I feel like I should preface this post, and all of my interactions today with the following caveat,

"I got up before 5AM; my parents house and another property they own is flooded and they are on vacation; my lower back is killing me; I have not had a good kid break in a couple of days; we can't go to Vermont this weekend because of the aforementioned flooding; I had to cancel my much needed haircut because of same flooding; and my husband is going to Alaska on Wednesday for a week and a day and I will be GASP, a single parent of two lunatic children."

In addition, my ENTIRE family's birthdays are in March (including M), and I have yet to purchase one of the seven plus cards and gifts I will need by the end of this month. However, I did find the PERFECT gift for friend K in Oregon, Been Doon So Long, by the owner of the Bonny Doon Vineyard in Santa Cruz, California. I had it sent to me so I could preview it. K is a wine and food connoisseur (yes, I had to look up the spelling), and I think he will be quite surprised since he is not a friend I usually buy gifts for (his wife is a BFF of mine). But I like to get the perfect gift for someone when I find it, even if my purchasing habits may be inconsistent.

So, I have had, as Babysitter Extraordinaire (BE) put it, A No Good, Very Bad, Horrible week. Two autistic kid events that didn't work out, either well, or at all, no exercise (until today), I had very little chance to do computer work with Sam, and the rest of the shit you already know about. Plus, childcare is somewhat limited because we thought we would be away. But, the upside is, GARDENING! YOGA! SUNSHINE! M even took the lawn furniture out today, which I am sure will result in subsequent snow and cold.

As my therapy this week, I have chosen retail, specifically Amazon. Those folks are, as The Little Person remarks,

"(That's) Genius!"

They have my credit card info (actually Debit, we don't use credit cards anymore), and all it takes is One Click. I think of something I need/want and CLICK! It's mine. So, the packages have been arriving. Four new cookbooks, plastic strap-on skis for the kids, autism books, and more autism books.

It is the kind of week where Things and Television make me happy, in addition to magazines. Did I mention my new subscriptions? Also, sweaty yoga tomorrow, and hot tubbing with Lovely Neighbor. Along with resulting tasks at Flood Central. I'm thinking pancakes and bacon for breakfast. What are you doing this weekend?

Part Deux

So, the swimming. Let me set the scene.Sam has been taking private swimming lessons for a year and a half. First we went to the JCC, which had an Adaptive Aquatics program, so the instructor(s) had some experience woking with kids with autism. We were fortunate to get Tony, who was fantastic. The first thing Tony did was kick me out of the pool area. I would go upstairs and watch through a window whilst sitting and reading. It became my favorite part of the week. The going was a little stressful, since I picked Sam up at school (15 minutes away from our house) and then drove to the JCC (20 minutes from Sam's school). I would bring snacks, and he would chill and in the early days, sometimes fall asleep on the way. So the driving was about almost an hour all told. Then there was walking into the JCC, checking in at the front desk with my squirming child, and taking him down to the family locker room to get him dressed. It was all good unless we were early, or Tony was busy.

The good and bad was that Tony was the Aquatics Director, and so he sometimes had to cover for other staff. But all in all, we were happy. Tony works somewhere else in the summertime, so we had Lucinda last summer, and though we were concerned at first (and missed Tony, who SAM was used to), she ended up being great. Very calm. Both of them had oodles of experience with kids on the spectrum. Then the JCC became the YMCA, which changed things. The Adapted Aquatics Program was a JCC program, so they were now running the program from outside the building and had less control. The available times became much more limited and were mostly on weekends, when we go away a lot. So we took a break and eventually signed both kids up as members at another YMCA nearby. The plan was to have L take Sam swimming on Sundays, but it took us a while to set that up, and then it didn't work out so great. L was into it, but the slide at the pool was a problem (Sam would have to wait in line) and the young lifeguards on the weekends were not accommodating to a kid on the spectrum, mostly due to inexperience. We talked with the administration at the Y, and they were receptive, saying that they just hadn't been able to effectively train all of their staff, and perhaps we could try a weekday. So I looked into private lessons, and though their Adaptive Aquatics program had been going on for less time and seemed less organized than the JCC, they had just hired someone with experience and were eager to work with us. That was the first instructor, who's experience ended up being with a child with cerebral palsy, but she was very nice and eager to work with Sam.

M ended up teaching Sam swimming for about a month or so. Then we signed him up for the next session, assuming it would be with her again. Apparently, M switched her days, and they were planning to switch instructors. I told the Aquatics Director that we would prefer to stay with the same person, and so WE switched days. The first day we showed up as M was leaving, apparently she didn't know she had to teach even though I had confirmed it with The Director that day. She was very gracious about staying and teaching Sam. I gave her my number and she said she would text me regarding the next week and the time (I had asked if she could do it 10 minutes later so we wouldn't be late). I may have written about this previously, but I arranged to pick Sam up at school and play on the school's playground for 10 minutes so we wouldn't be too early. M texted me an hour before the lesson to say she was sick and could we reschedule. So I picked him up anyway, and he was fine about going home.

She texted me during the week to see what days would wok for us, and we decided to just make it up at the end of the session. Then this week we showed up and...there was a new instructor. A is her name. She said that M had a health issue or emergency and they had to take her off the roster. I was dumbstruck, as I couldn't believe that The Director wouldn't call to let me know it was going to be a new person. I asked about A's experience working with kids with special needs and autism. She said 16 years. Great! I gave her a little information on Sam, ie: he's non verbal but understands a lot, he will test you until he knows you, he knows some signs, he can swim etc...and I went to sit in the lobby (it is so hot by the pool you could die. The air is suffocating, but the pool is often freezing. Go figure). I am sitting watching through the glass in the lobby and reading a magazine when A comes to the window and mimes like she needs help. I should back up and say that I already noticed that she had no control over Sam, and I had already seen him get out of the pool walk past two lanes and jump off a platform over a few other kids. I RUN around to the family locker room and out to the pool. Turns out Sam was crying and pulling his bathing suit down, signing help. Guess what? He had to go to the bathroom. Also, she scratched him with her fingernail by accident when he was getting out of or into the pool, so there is a nice red scratch up his side. I take him to the bathroom, come out and she apologizes, says he was all over the place and not listening to her and do I want to continue the lesson (there are about 5 minutes left at this point)? I say I think we are good for today, and leave to comfort my child, who is still crying. I feel like at best, she was totally unqualified to be teaching him. I also decided we were done with Sam at the Y. I emailed The Director that night and told her what had happened, why I was unhappy and that I would like a refund on Sam's lesson and the rest of his year membership.

The next day I got two emailed apologies, one from The Director, and one from A. Both were very nice, and honestly hoped that we would try again. By that time, I had already called a different place and spoken to someone about a different placement for Sam. I had been furious, but I was never sad. This was a difference for me. Whereas before, I would have been embarrassed, defeated, wrecked by this type of situation, I was instead just mad and concerned about my child. It wasn't his fault that she didn't understand he needed to go to the bathroom, that he got scratched, and that the instructor was unprepared and inexperienced. It was not his fault that the instructor had changed with no notice. I did what I needed to do For My Child. As it turns out, we will get the refunds we asked for, and Sam will get to swim. I am even thinking of checking out Special Olympics as a after school activity.

I am feeling so much better about my life with Sam. He is my special boy and I cannot wait to see what he can do! And, life keeps going. There is always something new to deal with. Today we went to a special Speech Therapy appointment at Children's Hospital in a department that specializes in Augmented Communication. We confirmed the appointment yesterday, mostly to make sure the insurance authorization had been obtained. I picked Sam and his teacher up at school and drove the thirty minutes to the appointment. When we got there, all prepared with our device, computer, iPod and snacks, we found that there had been a mix-up, and someone had scheduled us in a time slot that should have been blocked. The Speech Therapist was not even on site, and could we come back in two hours?

Therein lies a whole nother post. Till next time, my dear friends.

Wormy The Pet Worm

This post is being brought to you by The Little Person's new pet, Wormy. If you hadn't guessed, Wormy is a worm. I have a lot to share, but feel a little overwhelmed by all that is going on.

Autism Symposium

M and I attended an Autism Symposium on Thursday and Friday of last week. Since we were both going, it took some arranging, but thanks to Gram, Lovely Neighbor, and Babysitter Extraordinaire (BE), we pulled it off. BE actually attended the Symposium with us, which was fantastic. It was so good to have her there, and she saved us seats, which was important, since there were 450 people attending the first day. The keynote that morning was Temple Grandin and she was amazing, inspiring and super funny. She had her trademark cowboy shirt on with her pins, and Claire Danes did an incredible job portraying here because they sounded exactly alike. I even asked a question, whether she still had the Squeeze Machine and whether she could comment on her relationship with her typical sibling/sister.

They had a great "bookstore" with tons of resources in the back, and I bought as many as I could that I thought would be useful for working with Sam. The second speaker of the day was Elaine Hall, from Autism: The Musical (great if you can rent it). I have heard her speak before and seen her story about The Miracle Project, where she brought together a bunch of differently functioning kids with autism and their families to create a musical. I think, as BE commented, that she would be better for people new to the autism community, either parents or practitioners. She was good at energizing folks, but I felt like she didn't share as much of her story as she has in the past, and that affects her authenticity with this group.

The next day we heard from Pat Mirenda, who is the guru on all things AAC (Assisted Augmented Communication), SGD's (Speech Generating Devices), assistive technology, and social interaction for kids on the spectrum. I loved Temple, but this was the presentation I got the most out of, because this is exactly where we are at with Sam. I enjoyed it thoroughly, took copious notes and didn't want to miss a minute. I was fully engaged the entire time, which was most of the day. I again purchased resources, but we also got lots of ideas for things we can and want to do with Sam. It felt great (and overwhelming) to think about all of the things he can do with a little help. I will keep you updated as we implement some of the new things we learned about.

The other thing is that Sam has a new SGD (speech generating device) called, ironically, Say It Sam, and apparently he has really connected with using it, according to his teacher. He comments on the weather, and tells his teacher when he has something to say. We are looking forward to seeing him and the device in action. Hopefully, the prior authorization from our insurance will be worked out for his speech therapy appointment on Thursday. He has been doing great work for me at home, and with L, who does respite on Sundays. Aside from the ongoing early waking, I am feeling really good about things with Sam. Though there is always nagging feeling that you can always be doing more for or with your autistic child, or that you should have done more earlier. Found a good book by a local (Brookline, MA) woman called The Autism Mom's Survival Guide, which I identify with a lot more than I would have thought.

OK, need a break. Part II regarding swimming and anything else will be tomorrow (hopefully).