This week we got 10 hours. I know long ago that would have felt like a huge achievement. Now that we have reached much bigger numbers and have bigger future goals that feels like a small number. In my consultation with M. she helped me see that I am still running a program, even if the numbers are smaller and that maybe I don't have to be disappointed in myself. I am really ready for M. to be here next week and to go for the next bit of SR training. I need a boost.
This has been a hard week, a hard month, a hard 5 1/2 years. I know that some times haven't felt hard at all (many are easy and joyful and exciting and amazing), but when things do feel hard it is difficult to remember that it's not always that way. Please know that every response, every email of support, every phone call, every question about how things are going, every everything that you do to let me know you are with me really means a very great deal to me. It means a great deal each and every time.
I think this was a particularly hard week for multiple reasons.
1. It is hard being a parent
2. It is extra hard parenting a child with special needs (I continue to be stunned by the ease with which Amy learns things and imitates things and wants to help with things and listens to things and eats things)
3. It is hard having a rambunctious toddler and a child with special needs
(yes, I know they are also my greatest love and joy, and yet...)
4. Last week one of my first grade teachers died
5. Last week a friend that I knew since I was 4 died
6. Sunday-Monday I drove 13 hours to attend the funeral. Still processing the death of someone so young. Still processing that she won't write back any more.
7. Carl and I didn't see each other from Sunday afternoon till Friday night and this was his fourth trip this month
8. Got briefly locked out of the house Friday afternoon (climbed a ladder to get in through the balcony)
9. Every morning is a struggle to get Sarah to dress herself/use the potty in a time frame that feels shorter than a thousand years
10. Amy fell off some equipment at the playground and bumped her head; she was ok but I was shaken.
11. We are still not up to full volunteer strength. Soon. I knew Sept would be this way, but it doesn't make it easier. It does make me appreciate my volunteers even more than ever.
12. Sometimes I am just tired of cleaning up toys and dishes and trying to keep everyone fed
13. Sometimes I am tired of the screaming and the crying and the tantrums
14. Sometimes I am tired of being asked 20 times a day to put on my jean shorts
15. Sometimes I want to wake up and have Sarah be a typical kid
16. Sometimes I am tired of the weird things that Sarah does
17. Sometimes I am tired of reading Amy's books to her over and over and over and over and over
18. The days are long. Even when I have help for some portion of them, they can feel very long.
On the plus side, Sarah has eaten cooked peas two days in a row!
Sarah's eye contact outside of the SR room is sometimes just beautifully present and clear. It is like this inside the room too but not always and not lately for me. Lots of semi-exclusive or fully exclusive behavior and less eye contact in the room (including telling me to move back). I also brought less umph to the room this week. Outside the room we have conversations of many loops as she goes through some of her new things to discuss. One recent event was last weekend when she and Carl tried to fix a broken toy by taking it apart with a screwdriver and putting in new batteries and testing wires. It is still broken. She talks about: turn screwdriver, fix toy, buy a new one, new batteries, new speaker, etc. (not all quite clear to outside listeners but pretty good if you know the context).
When we went on a walk in the rain I had a drop of rain go in my eye and others go up my nose. I also bumped my head on a wet leaf. The next day Sarah said "Don't bump head on wet leaf" and "you bump head on wet leaf" and "dop water up nose" and "dop water in a eye."
When she was playing outside and tripped a caught herself she said "Okay...yay...caught sef hans."
It is great that we are on the verge of my not being so impressed with her level of talking, that I am almost taking it for granted. Wow. I also realize we are now at a point when I need to watch my own language. Ahem. :)
I know some of you probably had harder weeks than I did. I hope the rest of you had easier weeks. I hope we all have a good upcoming week.
Love to all. Thanks for listening.
Saturday, September 29, 2012
Saturday, September 22, 2012
September 22
This week we got 16 hours.
Sarah is definitely talking more to her volunteers than in the past. She continues to tell stories about what happened to her or to Amy, mainly about falling down the stairs. Sometimes it is a bit confusing to follow whether she is talking about something that did happen or something that might happen or will happen (eg if someone falls down the stairs then they need to go to the hospital). Certainly not everyone understands everything she says but we are so much farther along than we were in January when we started with volunteers. On the one hand, of course we are farther along. On the other hand, I want to continue to notice and celebrate because it keeps me motivated.
This week we had some extra unscheduled time so I took Sarah back to hippotherapy. It went fine but it also reminded me why I had stopped and that it is still a good idea not to go regularly. It is just way too long of a drive for the girls for a very short time on the horse and it messes up Amy's bedtime.
When Sarah wants a certain person she usually says their name followed by "come in." One evening when I was putting her to bed and we were talking about the glowing stars on her ceiling she said "Moon, come in." (because there is no moon sticker on the ceiling.) I love when she can take her language that step farther into spontaneous and new sentences and sentiments.
When I took the girls to Trader Joes saying we were going to buy something for Mom-Mom, Sarah said her version of "buy a birthday cake." This was another new creation by her, showing that she really understood. She also then helped sing "happy birthday" to Sonia, with her solo sounding something like "happy buh tish you" with some lengthy pauses but some lilt too.
Sometimes I can feel tired in a way that isn't really about sleep. Sometimes I just want to let go and stop working so hard. What I love is that when I have that thought of letting go and falling, I never fall even an inch because I know that I have the hands of all of my volunteers and friends and family there holding me up with their time and encouragement and belief in Sarah and in me. Thank you all again and again forever and always.
Sarah is definitely talking more to her volunteers than in the past. She continues to tell stories about what happened to her or to Amy, mainly about falling down the stairs. Sometimes it is a bit confusing to follow whether she is talking about something that did happen or something that might happen or will happen (eg if someone falls down the stairs then they need to go to the hospital). Certainly not everyone understands everything she says but we are so much farther along than we were in January when we started with volunteers. On the one hand, of course we are farther along. On the other hand, I want to continue to notice and celebrate because it keeps me motivated.
This week we had some extra unscheduled time so I took Sarah back to hippotherapy. It went fine but it also reminded me why I had stopped and that it is still a good idea not to go regularly. It is just way too long of a drive for the girls for a very short time on the horse and it messes up Amy's bedtime.
When Sarah wants a certain person she usually says their name followed by "come in." One evening when I was putting her to bed and we were talking about the glowing stars on her ceiling she said "Moon, come in." (because there is no moon sticker on the ceiling.) I love when she can take her language that step farther into spontaneous and new sentences and sentiments.
When I took the girls to Trader Joes saying we were going to buy something for Mom-Mom, Sarah said her version of "buy a birthday cake." This was another new creation by her, showing that she really understood. She also then helped sing "happy birthday" to Sonia, with her solo sounding something like "happy buh tish you" with some lengthy pauses but some lilt too.
Sometimes I can feel tired in a way that isn't really about sleep. Sometimes I just want to let go and stop working so hard. What I love is that when I have that thought of letting go and falling, I never fall even an inch because I know that I have the hands of all of my volunteers and friends and family there holding me up with their time and encouragement and belief in Sarah and in me. Thank you all again and again forever and always.
Sunday, September 16, 2012
September 16
This week we were just shy of 20 hours. It is amazing the difference it makes to have a few volunteers! I am astounded to report that as of now I no longer need any volunteers. Holy cow! With the two new people I recently started/am about to start training, we are all set to achieve 30-40 hours a week once Sonia is here and we are fully up and running. Holy cow! I am just so amazed with how all of this has come together. I am so blessed. So blessed by my volunteers and by my amazing family and friends. Word of mouth is such a powerful tool. I have gotten 4 volunteers because of A.! Because he talked about what he was doing and how much he was enjoying it. It is like thinking you received one present and discovering 4 more inside.
This week when Carl was playing with Sarah and they were drawing on the white board, he asked if she could draw a circle. She did a pretty good job at the circle and then spontaneously said her version of "color in" and proceeded to do a better job of that than ever before. This is exciting in terms of both spontaneity as well as skill. I have requested that she color things in and it is usually a scribble covering the object and reaching far beyond as well. I have modeled coloring things in and staying in the lines. It is exciting when things seem to percolate inside her and come out more fully processed.
When Sarah was playing with Sy. and heard Amy crying, Sarah proceeded to spend 5 minutes interactively talking to Sy. about falling down the stairs and going to the hospital. She had eye contact the whole time. Sarah and I spend lots of time talking about this subject but it is super exciting that she chose to tell another person and that Shephaly could understand! One of my new volunteers, Sc., was also able to understand almost all of what little S told her - another amazing thing. It is so hard to remember a year ago when Sarah barely said any words. She had signs and the beginning sound of many words and a few complete words. Now she says 3-5 word sentences!
Another subject that Sarah likes talking about is when something goes down the wrong tube, such as Amy's juice or water. When G. was here and Amy was drinking and then coughed he said that something went down the wrong pipe. Sarah clearly understood and was tickled by this alternative word choice. In general I make a conscious choice not to dumb down my speaking. Certainly there are times to be simple but there are many other times when I purposely smart up my speaking and use big words and weird words and nerdy words. I so much appreciate when other people also expect that she can understand things.
I hope everything is going down the right tube for all of you.
This week when Carl was playing with Sarah and they were drawing on the white board, he asked if she could draw a circle. She did a pretty good job at the circle and then spontaneously said her version of "color in" and proceeded to do a better job of that than ever before. This is exciting in terms of both spontaneity as well as skill. I have requested that she color things in and it is usually a scribble covering the object and reaching far beyond as well. I have modeled coloring things in and staying in the lines. It is exciting when things seem to percolate inside her and come out more fully processed.
When Sarah was playing with Sy. and heard Amy crying, Sarah proceeded to spend 5 minutes interactively talking to Sy. about falling down the stairs and going to the hospital. She had eye contact the whole time. Sarah and I spend lots of time talking about this subject but it is super exciting that she chose to tell another person and that Shephaly could understand! One of my new volunteers, Sc., was also able to understand almost all of what little S told her - another amazing thing. It is so hard to remember a year ago when Sarah barely said any words. She had signs and the beginning sound of many words and a few complete words. Now she says 3-5 word sentences!
Another subject that Sarah likes talking about is when something goes down the wrong tube, such as Amy's juice or water. When G. was here and Amy was drinking and then coughed he said that something went down the wrong pipe. Sarah clearly understood and was tickled by this alternative word choice. In general I make a conscious choice not to dumb down my speaking. Certainly there are times to be simple but there are many other times when I purposely smart up my speaking and use big words and weird words and nerdy words. I so much appreciate when other people also expect that she can understand things.
I hope everything is going down the right tube for all of you.
Saturday, September 8, 2012
September 8
This week we got 13 hours and 40 minutes. This was mostly me with a little bit of time from Carl and some from my mom, J.
Sarah had a bit of a tumble down the last of our concrete steps outside. I don't know if the fault lies in her new sneakers being sized with room to grow or that they were so interesting to look at that Sarah was a bit too intently focused on seeing her shoes and not on her balance. I know that I was going to get Amy in the car while Sarah came down the steps on her own, as she always does, and I turned to see her tip head first into the cement and roll out of it. So it is good that she sort of knows how to do a somersault because it made it graceful and it was low velocity and a short distance, but cement is cement and one's head is bound to lose in such a pairing. So she had a large goose-egg on her forehead and some scrapes under her eye. I took her to the doctor and he said she was ok. That night she had a fever and was low energy the next day. I took her back to the doctor and they thought maybe she had gotten a virus at the same time. Given that one day later she was totally herself I think maybe the whole fever and low energy day were due to her body processing and healing from the fall. Now Sarah has added to her rules to live by: no fall down stairs and no somersault down stairs. Good rules to be sure.
The day after her fall I did some SR time that was very chill and low-key. At one point we were lying on the floor and she looked at me and said "Mom, fahnd dahk boo paydough" (mom, find dark blue playdough). I frequently model that kind of sentence construction with my name at the start of a sentence. This is the first time she has used that construction beyond "mom, help." So exciting. She is also starting to fine tune some of her language. As I ate a bagel for breakfast she said "cunch....cunch....cunching" (crunching).
When I picked the girls up from daycare on Friday, Sarah noticed me, looked at me with a smile and said "mom! ha" (mom, hi). I know that I keep describing these little moments so one might think they occur all the time. They are picking up in frequency but are still novel enough to be exciting and unexpected each time. It will be marvelous when I start taking them for granted.
As I mentioned, my mom is visiting. Hallelujah! Carl is away for some rowing and business trips so it is really great to have the extra help, especially over the weekend since weekends alone are always the hardest for me. The last time J. saw Sarah was in July and she says there has been a language explosion even since then. I agree. J. also noticed that what Sarah says is more often relevant to what is going on, as opposed to in the past when she was obsessed with certain stories and would reference them out of the blue.
J. had a lovely 40 minute SR playtime all focused around making Sarah's bed and Sarah being a lump that couldn't be smoothed out. This wasn't in the SR room but was very clearly SR play. When I came over at one point to say hi to Sarah she clearly told me to move away. I love when she can so clearly say what she wants. She was also attending to the game and giggling about it for 40 min! That is huge. We definitely hit that length of attention span these days but it isn't all the time. When I introduced the peg board into the room last week, she and A. played interactively with the pegs for 90 min. That might be a record. I often get 20-30 min times but I also often get 10 min interactions before we change to a different activity. The lump in the bed game is extra exciting because it was J.'s game that she introduced to Sarah. Many interactions in the SR room center around Sarah's chosen activity and then we build in new ideas in small ways.
Sarah had a bit of a tumble down the last of our concrete steps outside. I don't know if the fault lies in her new sneakers being sized with room to grow or that they were so interesting to look at that Sarah was a bit too intently focused on seeing her shoes and not on her balance. I know that I was going to get Amy in the car while Sarah came down the steps on her own, as she always does, and I turned to see her tip head first into the cement and roll out of it. So it is good that she sort of knows how to do a somersault because it made it graceful and it was low velocity and a short distance, but cement is cement and one's head is bound to lose in such a pairing. So she had a large goose-egg on her forehead and some scrapes under her eye. I took her to the doctor and he said she was ok. That night she had a fever and was low energy the next day. I took her back to the doctor and they thought maybe she had gotten a virus at the same time. Given that one day later she was totally herself I think maybe the whole fever and low energy day were due to her body processing and healing from the fall. Now Sarah has added to her rules to live by: no fall down stairs and no somersault down stairs. Good rules to be sure.
The day after her fall I did some SR time that was very chill and low-key. At one point we were lying on the floor and she looked at me and said "Mom, fahnd dahk boo paydough" (mom, find dark blue playdough). I frequently model that kind of sentence construction with my name at the start of a sentence. This is the first time she has used that construction beyond "mom, help." So exciting. She is also starting to fine tune some of her language. As I ate a bagel for breakfast she said "cunch....cunch....cunching" (crunching).
When I picked the girls up from daycare on Friday, Sarah noticed me, looked at me with a smile and said "mom! ha" (mom, hi). I know that I keep describing these little moments so one might think they occur all the time. They are picking up in frequency but are still novel enough to be exciting and unexpected each time. It will be marvelous when I start taking them for granted.
As I mentioned, my mom is visiting. Hallelujah! Carl is away for some rowing and business trips so it is really great to have the extra help, especially over the weekend since weekends alone are always the hardest for me. The last time J. saw Sarah was in July and she says there has been a language explosion even since then. I agree. J. also noticed that what Sarah says is more often relevant to what is going on, as opposed to in the past when she was obsessed with certain stories and would reference them out of the blue.
J. had a lovely 40 minute SR playtime all focused around making Sarah's bed and Sarah being a lump that couldn't be smoothed out. This wasn't in the SR room but was very clearly SR play. When I came over at one point to say hi to Sarah she clearly told me to move away. I love when she can so clearly say what she wants. She was also attending to the game and giggling about it for 40 min! That is huge. We definitely hit that length of attention span these days but it isn't all the time. When I introduced the peg board into the room last week, she and A. played interactively with the pegs for 90 min. That might be a record. I often get 20-30 min times but I also often get 10 min interactions before we change to a different activity. The lump in the bed game is extra exciting because it was J.'s game that she introduced to Sarah. Many interactions in the SR room center around Sarah's chosen activity and then we build in new ideas in small ways.
Sunday, September 2, 2012
September 2
This week we got 27 hours and 15 minutes. This was in large part due to wonderful help from A., who came every day to work with Sarah and to watch Amy while I worked with Sarah. Today we bid him a fond farewell as he heads off to NYC. He will be missed.
September looks like it will be a lean month Sarah-Rise-wise because 4 volunteers will be away for part or all of September.
Sarah's eating this week has been a marvel. On three separate occasions she has consumed 2 hot dogs in one sitting! If only someone could have told me this would happen back in the early days when I would be a sobbing mess, cursing and screaming to God in the kitchen because Sarah wouldn't eat even a small jar of baby food. Thank goodness things have gotten better. We certainly still follow a high-calorie regimen but it is with more ease and so much less desperation. I also got her to eat some diced prunes this week by calling them fruit snacks (a term she associates with a packaged treat, even though the fruit snacks I get her are also simply dried squished fruit).
We had a miracle of listening and self-restraint the last time we went to the co-op. Normally I have Sarah in the cart and she clamors to be done and wants to play with the door; or I have her loose but then she often runs to play with the door so I have to keep a firm hold on her hand. This week I let her stay loose on the standing board of the stroller and we did a very fast shopping trip. The miracle was that as we were checking out I told her to stay with me and the stroller until I was done and then I would let her play with the door. She did it! She was mere feet away from said door and was chomping at the bit but she restrained herself and waiting until I said she could play. All went beautifully until I told her it was time to actually leave and then she tried to get away from me so fast that she nearly collided with the counter, to which there is a downhill slope. Still, I count this as an achievement for both of us. I think it was important that I was willing to let her play; if I had just been saying no then I think she wouldn't have waited because she would have been so desperate to get in any door play.
This morning we had a beautiful social moment. The girls and I were returning from a stroller walk and we passed a house where some parents were helping their young children get ready for a bike ride. Sarah (on the standing board) turned her head to look at them and waved and said "ha" (hi) repeatedly until they looked up and said hi. This is not a usual occurrence for us and it is so exciting when Sarah takes these social steps without any prompting.
I hope you are all having a good holiday weekend. As always, thank you all for your love and encouragement. And, as ever, thanks to all of my volunteers (and paid professionals) who give their time and love to make our program the success that it is. Thanks for being our village.
September looks like it will be a lean month Sarah-Rise-wise because 4 volunteers will be away for part or all of September.
Sarah's eating this week has been a marvel. On three separate occasions she has consumed 2 hot dogs in one sitting! If only someone could have told me this would happen back in the early days when I would be a sobbing mess, cursing and screaming to God in the kitchen because Sarah wouldn't eat even a small jar of baby food. Thank goodness things have gotten better. We certainly still follow a high-calorie regimen but it is with more ease and so much less desperation. I also got her to eat some diced prunes this week by calling them fruit snacks (a term she associates with a packaged treat, even though the fruit snacks I get her are also simply dried squished fruit).
We had a miracle of listening and self-restraint the last time we went to the co-op. Normally I have Sarah in the cart and she clamors to be done and wants to play with the door; or I have her loose but then she often runs to play with the door so I have to keep a firm hold on her hand. This week I let her stay loose on the standing board of the stroller and we did a very fast shopping trip. The miracle was that as we were checking out I told her to stay with me and the stroller until I was done and then I would let her play with the door. She did it! She was mere feet away from said door and was chomping at the bit but she restrained herself and waiting until I said she could play. All went beautifully until I told her it was time to actually leave and then she tried to get away from me so fast that she nearly collided with the counter, to which there is a downhill slope. Still, I count this as an achievement for both of us. I think it was important that I was willing to let her play; if I had just been saying no then I think she wouldn't have waited because she would have been so desperate to get in any door play.
This morning we had a beautiful social moment. The girls and I were returning from a stroller walk and we passed a house where some parents were helping their young children get ready for a bike ride. Sarah (on the standing board) turned her head to look at them and waved and said "ha" (hi) repeatedly until they looked up and said hi. This is not a usual occurrence for us and it is so exciting when Sarah takes these social steps without any prompting.
I hope you are all having a good holiday weekend. As always, thank you all for your love and encouragement. And, as ever, thanks to all of my volunteers (and paid professionals) who give their time and love to make our program the success that it is. Thanks for being our village.
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