August 31

I forgot last week to share that while Carl and I were away, Sonia gave the girls a bath and washed their hair. The remarkable thing is that Sarah tipped her head back in the water and didn't fuss about the whole process! Clearly Sonia will be washing Sarah's hair from now on. :) Part of the reason this happened and worked is that Sonia didn't know that Sarah doesn't tip back. The follow-up to this bit of news, though, is that when we returned from a camping trip this morning and needed to wash Sarah's hair, there was lots of yelling and resistance. Perhaps I should have called Sonia to come do it. Or maybe it is just that sometimes hair washing goes easily and sometimes it doesn't.

Sarah had her first week of preschool (as part of our homeschooling). She did beautifully. I was there the first day, sitting in the hall behind closed doors. I only helped for when Sarah needed to stay in a line and with snack time and outside playtime. During the prayer before her snack she kept sneaking peeks back at me. It felt very kid-sneaky-wonderful. I didn't observe her for very much of the time overall, but what I did see felt full of a clear, present, calm, healthy poise. On the playground she watched the other kids often, but with a mostly calm demeanor. A couple of years ago she would have had her head tilted upside down while she watched the feet passing her and her jaw and hands would have been moving a mile a minute. Now she stood and watched, head and body upright, jaw mostly still, hands mostly calm. 

One thing I am appreciating recently is the perspective of when.  It is not if, it is when. For anything. It is not if she will be able to play with other kids; it is when and how can we best continue to help her?

Overall I have felt more successful in being compassionate with Sarah's upsets. (Not all the time; especially not regarding camping because that collided with my own tension). I have hugged and held her more and sometimes this helps her move into calm more easily. I have been able to say I'm sorry I have to wash her snail pants from a place of empathy instead of defensiveness. 

Carl had a new experience around Sarah's upset too. Sarah loves a car across the street very deeply and if it is not parked outside then all is not right with the world. Several nights ago, Sarah checked on the car's status after bedtime and was chagrinned. Carl came in to comfort her and did so from a shared belief that all was not right with the world because of the missing car. He was really with her. Then he started talking about where the car's owner might be. Together they decided that the owner had gone to Target to get a pizza. This seemed new in how Sarah was thinking while moving through her upset instead of being frozen in her upset.

On Tuesday the girls had gymnastics class. This is the first time they are in a shared class and without a parent directly with them. I stayed in the room and only had to intervene a few times when Sarah tried to get to new equipment before it was time. Sarah sat on the line at the beginning and said her name when it was her turn to introduce herself. She followed 1/3 of the warm-up movements before getting more interested in other things. This is a huge improvement from when she first took a gymnastics class a few years ago. I was struck by how proud I was of Sarah's participation. Then I was aware of how much I take for granted that Amy will participate easily and the fact that she does so gets less awe and appreciation, though it is no less amazing. Perhaps it is because it comes relatively easily for Amy whereas I know it has been a struggle for Sarah and work from her SR team to help her get to this moment. Still, I want to notice the miracle of Amy at the same time as I notice the miracle of Sarah.

We went to a beach at a lake yesterday and then went camping in the adjoining campground. It was wonderful. (And sometimes stressful and annoying.) There was a lot of whining and yelling during the morning to get ready and then impatience when we arrived to skip lunch and get right to the water, though we prevailed that lunch had to happen first. Most of the impatience was by Sarah, and then by myself towards her. The moment I am most proud of is when I realized that, for me, beach or camping preparations are stressful and that I have a challenging time with it, just as Sarah may be challenged by various situations, and that my recourse to self-care is grumpy tension as I try to maintain control in a non-standard setting. And that is all. That is ok. I was then able to let it be ok and release the grumps and have a good time. Amy was very bold, exploring all around and making a new friend. Because the beach is small and she had a life vest, we didn't have to shadow her closely. Sarah also explored quite a bit. 

When it comes to camping, we definitely had our priorities in the proper order. We began with s'mores. S'mores with homemade graham crackers (grain-free, vegan), homemade marshmallows (using honey), and homemade chocolate bars. The marshmallows didn't quite roast like the store-bought variety, but they were yummy. The girls mostly ate each part separately. Then we had hot dogs. Then we set up the tent. 

I have been again aware of my compulsion to think I should be doing more when things are feeling easy. When our Sarah-Rise program feels easily successful, then I think that we would be doubly successful if I doubled my efforts, even though some of the effort is to have things feel relaxed and easy. I think I'm succeeding at noticing but not acting upon the compulsion to do more. If things are going well, maybe let's just keep rolling. 

A less lovely awareness regards my reaction when Sarah slipped off the step stool a little during a middle of the night party a few nights ago. My reaction was one of fearful, angry judgement, of "what is wrong with you?" in my head. This was not a pretty moment to notice, but I am holding it with some gentleness given that it was a two hour party that started at 2:30am, on the heels of being up earlier because Sarah was yelling about needing new pjs because hers were sweaty and because she wanted a nightgown like Amy's new one (I had to explain that all the stores were closed in the middle of the night). This was also a solo night because Carl was gone for work. As Sonia pointed out, it is notable that this was the worst night in a long time. That means overall nights haven't been so bad. What I'm pondering now, in the light of day, is that maybe the person I am judging is me and how come I have a 7 year old who still wakes up so much in the night, who has rare parties that last for 2 hours, and who slips off a step-stool sometimes. If it could be ok that I have a 7 year old who fits that description, then maybe I could let go of judging Sarah in those moments. 

Sonia recently made a comment that has stayed with me. I was worrying about doing something to help a friend and wanting to do it right so the friend wouldn't get upset. Sonia said that even if whatever I did was great, the friend might still get upset because maybe she would need to be upset and that could help her be upset. This is helping me think about my girls and how maybe sometimes they need to be upset, they have feelings to vent and latch onto something I say or do as a means to help themselves. It doesn't mean I did the wrong thing. In fact, maybe it was just exactly the right thing. 

I have also been thinking generally about when everything goes haywire for a person's emotional equilibrium or clarity. I'm realizing that this is not a behavioral problem so much as a showing me where Sarah or I have reached our challenge point. I believe this is the main point of the Son-Rise Program, that kids with autism do not have a behavioral problem so much as a social relational challenge. I like the idea of extending this thinking to all challenges and behaviors that I don't like, in myself or others. The times that I blame Sarah for her behaviors are usually the times when I have run into my own challenge point, such as with camping preparations. So next time, maybe I don't need to ask her to be more patient. Maybe next time I can think about what is challenging for me and why and come up with new solutions to those challenges.

Anyway, thanks as always for listening. 

August 24

With regard to figuring out where I am, it has definitely helped to put words to my feelings. Once I do that then they usually start changing. It is sort of like recognizing where my head is in space. Once I do that then some of my neck tension tends to let go.

With regard to Sarah, I feel like she is starting to say more things and more varied things and that she is responding more quickly to things Amy says or does (joining a song, copying a new song or game) and things we say (telling us in return some piece of a story we just told her). I'm not certain about this perception. It is as if I have been listening to a song on the radio and someone turns the volume up very slightly so that I'm not sure if the volume actually changed or not. But I think it has. 

Sarah starts preschool tomorrow. (Amy's starts after Labor Day). It is part of our home schooling plan that she will attend the nearby preschool where she was last year. She will go three mornings a week 9-12. Sonia will be there, but this year she will sit in the hall outside the closed classroom doors. This way she will still be instantly available for things like snack-time, bathroom trips (so as to not to have Sarah instigate the whole class into playing with stall doors or jumping up and down), and the occasional melt-down. I am excited about this new arrangement because I think Sonia will be able to focus on other things, such as helping plan curriculum for our home activities, and I think Sarah may own her independence a bit more. My goal is that by the end of the year Sonia won't need to be there at all and that everyone involved will feel comfortable about that. 

Gymnastics starts on Tuesday. This is a short afternoon class and both girls will be in the same class. Sonia will be there in case Sarah needs extra help or supervision. (And she can of course help Amy too if need be).  Both girls have really been expanding their monkey antics at home so I am hopeful that gymnastics class will be the perfect place for them. Amy has started going across the monkey bars by using her feet in the rings and zipline ring to stabilize herself as she moves her hand placement to new monkey bars. Sarah has started trying to slide down the trampoline bar while saying "whee." This is way too short for her, but the idea is clear. Sarah also made a game of stepping over balloons on the floor. Amy likes to climb up the outside of the railing for the front steps. 

Yesterday we did an errand as a family. On the drive home, Amy starting singing something that sounded like, "Ala, ala....ala, ala." Sarah starting singing too. It was so awesome hearing them sing together and play together like that. 

With regard to school, sometimes I feel sad that we are doing yet another year of preschool for Sarah. Yet, when I hear that other kids with special needs are moving through grades and I know their capabilities are still at a preschool level, then I wonder what the grade labels mean other than that the kids are a certain age and have completed a certain number of years of school. Each year that Sarah has been in preschool has been different and I truly think this is where she is developmentally. What a huge success that she is here now and that she continues to grow and learn. What do grade labels matter? When I am in my Sarah bubble then I see our progress and I am amazed. When I am reminded that other kids her age are in second grade, specifically those she shared play dates with as a baby, then I feel like I am standing in a road and being left far behind. That feels rotten. I am also aware that everyone has some challenge in their lives and the challenges just come in different forms.  And I am happy for my friends who have second graders. That is truly wonderful. I want them to share what their kids are doing. No one is leaving me in the dust except the picture I give myself in my mind. From that road I will turn and go through my door to my beautiful house with my amazing family and continue building from where we all are right now, leaving labels behind in the dust.

August 18

Mom-Mom came to visit and it was wonderful to have such fresh help. She has totally fresh energy for the girls and I let her have almost solo childcare duty for two days while I did lots of other things (and Sonia took two days to work on her move). It was wonderful to hear new responses to some of Sarah's habitual melt-downs. I could see how I am jaded by repetition into having instant impatience. Unfortunately, as of right now, having witnessed and appreciated fresh responses has not translated into my having fresh responses. 

I am working mightily on first having compassion for my own tired self. I am trying to give my own feelings space so that I can let Sarah have her feelings. Maybe sometimes we are both just having a hard day together. Maybe when I am hurt that she just whines at me and never thanks me, maybe that is me not thanking me or validating what I do.

I am all for noticing and using my ability to choose how I respond to various things. I think first I must find out where I am. It is like locating myself on a map so I know where to go next. If I am feeling weary to my core then I have to let myself be weary to my core before I expect myself to be the Energizer Bunny. Yes, this is an amazing journey that I probably would choose again. Yes, I have incredible experiences and meet wonderful people. And, yes, I am so tired of not sleeping through the night because of small individuals. I am so tired of the yelling and whining. I am so very tired of always feeling like I should do more. I am just so tired. I get breaks, but maybe breaks do not do the backward filling of my reservoir. Maybe the breaks keep me at my current level. And certainly new revelations can do some backward refilling. But I also want to acknowledge and honor that this has been very hard. Parenting can be hard in general. Parenting a child with special needs can be another level of hard entirely. It has been hard in the practical ways of potty training taking longer and feeding challenges. It has been hard in the more spiritual/mental ways when I compare my situation and feel lacking or deeply envious of others. The demands are higher and the road is longer. For any developmental stage through which Amy passes, Sarah takes about 5 times as long to pass that stage. Sarah's stages are not as easy to read because she is all over the place. In some ways she is younger than Amy and in other ways she is older. 

What I realize after writing down some of what is hard is that at least half of the struggle is due to the way I am thinking about the situation. I am the one thinking I should do more. I am the one doing the comparing. So if I am tired of some of those things then it is time to stop framing things in the way I have been. This seems slightly easier said than done, but it is a start.

My thoughts on Wednesday: I am feeling like I want to go on strike for a bit. I don't want to do anything. I don't want to make more healthy food. I don't want to do more SR. I don't want to do potty sitting. I don't want to get up in the middle of the night. I don't want to read kids' books. I don't want to be yelled at or whined at or screamed at.

I often think that other people would be able to handle all of this better and that there are many other SR parents who do. But maybe that is irrelevant. There is actually only one Sarah and one me and one Amy. So there is no way to directly compare. Maybe the truth is that I have done the best I can and that sometimes that means excelling so I impress my own self and sometimes that means feeling like a slob as I chow down on a chocolate bar and let my kids watch as much Dora as they want. Sometimes it means I am totally motivated and rock a 2 hour SR session. Sometimes it means I want to lie down on the floor and not get up for a day. Sometimes I am tired to my core.

I am currently enjoying a small vacation with Carl and it is lovely. A huge thank you to Sonia and A. for making this possible. I miss my girls but I hope this break will give me more space to let them have a range of emotions. My goal is to increase my compassion for  their upsets. This means starting with more compassion for how challenging it is for me when they scream. First, it is acknowledging my own emotions and saying, "I am here."

August 10

After my last update I again thought I had everything figured out forever and that I would never be grumpy again, never yell at my kids again, never feel drained again. Not so. This week I have felt tired and grumpy. We have also had many lovely, snuggly moments where I feel so blessed to have so much time with my girls. When both girls are climbing on me and giving me kisses and hugs I think I am the most blessed person in the world.

In contrast to some times when I have been grumpy, this week I have been more ok with the whole range of everything. I am more aware that even if I have my grumpy times or times that I don't have energy for something, I am still a good mom and a good person doing my best. I am more aware in many situations that it is ok not to be perfect and that I can still relax and enjoy myself. (This was good for Zumba on Wednesday when I was the only student!)

On Tuesday we went to a party at a neighbor's house where there was a zipline. Both girls went on it and loved it, but this was the first time Sarah got on like the other big kids did. She climbed to the very top of a ladder, turned around, grabbed the rope, and sat on the seat. Amy got on at a lower spot like the other little kids. At the party, Sarah played with a playdough toy and did some coloring with other kids. Towards the end she got over-saturated with the experience so she was isming strongly and not connecting easily anymore. 

I made clothes for the girls. I have never made clothes before in my life. Sarah has been asking forever for snail pants because her beloved  pants of the past were retired due to disintegration. I kept looking for the exact pair in used clothing stores but never finding them. When Grandma made elephant pajamas for Sarah that were very different from THE elephant pajamas of the past, I realized we might have more leeway about the look of the snails. Friday afternoon the girls and I went to a fabric store and found the one snail-pattern fabric that they had. It was probably easier that they only had one kind of snail fabric as opposed to the 50 kinds of owl prints. I also bought Dora fabric to make a dress for Amy. I used the elephant pajamas from Grandma to make a pattern for the snail pants. I opened my grandmother's sewing machine that I haven't used since before Sarah was born. Somehow, without too much trouble and with minimal cursing, snail pants were created and I only had to adjust the waist once! The dress for Amy was much easier because the fabric was already elasticized at the top so all I did was cut the right size, sew a seam and add straps. Then Sarah wanted a dress too so it was good that I bought 4 times the amount of fabric I needed. I feel very accomplished and I even enjoyed the sewing, which is new because I used to hate sewing.

During one of my SR sessions, Sarah and I played a snail race board game two times for real all the way through. The games weren't consecutive because she needed some ism-decompression time in between. What amazes me the most is that I am starting to be unsurprised and unimpressed when Sarah plays a game for real all the way to the end. This is still huge, but it is starting to become more normal and that in itself is huge. With the snail game, the dice have different colors on each side. Sarah was starting to read her dice herself and then move snails accordingly. 

Yesterday Sarah and I clashed a lot with our grumps. Sometimes I observe friends and loved ones clashing with their own loved ones and it is clear to me where they each take something more personally than it was intended. I have marveled at such clashes and counted my blessings that Carl and I don't often clash in such fashion. Yesterday it became blindingly obvious that my partner in clashing is Sarah. This has probably been clear to others for years. 

One of Sarah's favorite movies is "Donald In Mathemagic Land." In one part, Donald is told to clear his mind and the speaker says that Donald's mind is full of bungling and false concepts. Perhaps Sarah is here to help me sort out my false concepts and bungling. The sorting seems to be full of bungling too and I feel frustrated a lot, but I will keep trying to figure things out so that we clash less often. 

This week I have been appreciating myself for modeling trying something new that I don't know how to do. I told the girls that I thought making pants might be hard and that I didn't know what I was doing. I said this in a dramatic playful way that Sarah loved. I have also been thinking that it is great how many times Sarah asks for a food she used to be able to eat and can't now and I say that I will make it, while having no idea how I will do so. I am hoping this serves as a model for the kids that they can go for what they want even if they don't initially know how to make it happen. One of the specific foods I made this week was Boston Cream Pie Ice Cream. I made coconut milk vanilla ice cream with honey and vanilla cupcake swirled in it. The cupcake had chocolate frosting. If you were to compare to Ben and Jerry's you would notice a difference, but I still think it was a delicious attempt that satisfied Sarah's wish.

Given how much I can grump and clash with Sarah or feel overwhelmed by parenting two kids throughout the day, I have been feeling extra appreciative of Sonia. We may not always get a ton of official SR hours, but having Sonia here means that our whole day can be much more Sarah-Risey overall with much less Jenny-Grumping. Both kids get much more loving, relaxed attention. 

Sometimes I judge myself as weak for how little time I am on my own with the girls and how much I sometimes still struggle. Then I think, "#$%*& that! I have been a stay-at-home mom to a kid with special needs for 7 1/2 years. I am done with doing it on my own. I will get as much help as I can!). For some reason, seeing it in print that is has been 7 1/2 years helps me find awe and compassion for my tired self. This has been a long, hard, stressful, tear-filled road. It has also been the most incredible, beautiful, stunningly amazing road full of unforeseen blessings. Given a choice, I would pick this road again. I really think I would. It is heart breaking and heart mending. It is heart growing and soul stretching. And it is also so ok that I run out of gas as often as I do. Maybe that is part of the journey and the view too.

August 3

This has been a phenomenal week for me. I think I am really deeply understanding how important my own self-care is. Am I to let my lettuce or veggies wilt or let myself wilt? Veggies! Is it more important to make yogurt so we don't run out or to make sure I don't run out of my own oomph? Well, usually my answer has been the yogurt and the veggies get preference, because that is a form of self-care so that we all have food and I feel less overwhelmed the following day, etc. But the to-do list never ends. For most of my life I have wanted to get all my work done before I relax so that I can really enjoy the relaxing. Now I think I need to reverse that pattern and that relaxing and having an excess of time for me needs to come first. In fact, the first ingredient to having the Sarah-Rise Program of my dreams is to really fully take care of me. This means paying attention to nuances and taking breaks, when possible, as soon as I feel myself slipping under 90% of good energy and good feeling.

This week I have been taking care of myself more than ever. As soon as I start feeling burned out, I go to my room with my laptop to catch up on email, bills, calls, etc and Sonia hangs out with the girls. Or if Sonia isn't around then I let the girls watch something. In the evenings I've been letting my to-do list be done and sitting down to relax. I have felt rejuvinated and ready for the next day and next SR session, even with nights that were less than stellar. On the days when this wasn't so feasible, by the end of the day I had less creative, relaxed, loving flexibility for everything and everyone.  So, really, the first ingredient is to take care of me and then I will have so much more to give others that is in line with my vision of how I want to exist in the world. You can't cook if you don't have a working oven.

What is extra noteworthy about this week is that after a few days of what felt like indulgent excessive self care, Sarah spontaneously started giving me kisses all the time, or coming up next to me with a smile as she nuzzled in for a cuddle. This may have been coincidence but I am going to bet my program on continuing indulgent self care in the hopes that it cleans the air waves for Sarah's loving self and innate intelligence to emerge more easily and often. The same day that Sarah started giving me tons of kisses, Amy changed her usual, "hey, Mom, I love you" to "Mom, I am loving you." The cockles of my heart just melted all over the floor.

Sarah still puts things in her mouth sometimes but the frequency has dropped notably and the cuteness factor of when she spits something out and says "patooey" cannot be ignored, though I pretend to ignore it to dissuade the behavior.

With regard to going in the room and what constitutes a good session... a big part of Son-Rise is to feel good after any session, regardless of what actually happened, because of how I show up in the room. Sometimes this is easier that others. It is always easy to feel good when we have a really connected learningful time. This week I felt like I was really feeling good about the struggly moments too, believing anew that this is really a great way to help Sarah with her future connections in school and with friends in general. So if there are tears in the session, awesome! If she tries to put something in her mouth, terrific! If she wants to leave early and I don't let her, hurray! If I feel uncertain or my energy flags for a bit, that is great too. I don't have to be perfect in there.

There were a couple sessions where I definitely had moments of wanting to end early because I was tired or at a loss for what to do, but I stayed the course and I'm so glad I did. I understand and appreciate the idea that we aren't to go in the SR room unless we want to because if we don't really want to then we don't have the attitude that will make the most difference. However, I know sometimes I just need to show up and then everything flows from there. Sometimes we start our time and then she tries putting things in her mouth and I feel my energy sink and I don't want to do it, but I stay with it and then we move on and have a time, sometimes even an amazing time. Tuesday morning I didn't have a client so I did two hours with Sarah. There were a couple times when she tried putting chalk in her mouth (though it didn't really bother me) and some bigger times when she really wanted to be done. I knew she was tired because she was up for two hours in the middle of the night, as was I. But I stuck with it. I reminded myself that in school she can't just take a nap whenever she wants or leave when she wants. I told her she could nap later. Believing that it was still the most helpful thing for her to be in the room really helped me stay there and we had two large chunks of play, lasting 20-25 minutes each. We had other connected play as well but whenever a scenario or interaction lasts 20-30 minutes I take note because that is still remarkable. We ended with singing 5 songs together, the last of which was Old MacDonald and we sang 11 verses together. She even supplied some of the animals herself. When I say we sang together, that does mean in unison, but it also means I go really slowly and wait for her to get going and then I join her. Sometimes I sing a few words by myself and then pause for her to sing again, joining her as soon as she makes a sound. 

My thoughts Tuesday morning at various moments: Wow! I am really good at this. I am so good at being in the room and helping Sarah towards our goals. Holy moly I am good! ... but what is the point? Am I going to work my butt off for each small gain? Maybe. Is that ok? Is this an ok thing to do with my life? I think so. If it means Sarah can have a more fulfilling and connected and independent life later, then yes. Is it ok to put so much energy and effort towards helping just one person when there are starving and dying people all over the world? I don't know. Maybe. This is what I can do and maybe there will be ripples outward of people being inspired to do things. Or maybe I am just going to help this one person. Maybe the one person is more myself than Sarah. Am I doing this because I love Sarah or because I so wish to not have a child with special needs? Am I going towards or away? But... damn! Sometimes I'm really good in that room!

This week I was more ok with offering activities and letting go of the outcome, while still feeling good about trying. I did some music and movement and Sarah mostly watched. In the past sometimes I would feel frustrated with this and as if I was failing, but this week I just felt light and free and good that I could offer it and let it be. The same with art projects (mostly). I think I will have a much wider range of offerings if I don't limit myself to what I think will succeed. I will offer, invite, let go of the outcome, and then go watch something with my snuggly girls or go take a break on my own. When I am on I want to be on and when I am off, I want to be off, and I hope to let go of the middling pulling myself through the mud by my fingernails because that is not really fun for anyone.

At the start of most days I repeat several times, "fruit, veggies, protein" to remind myself of my eating intentions. I am now adding a reminder of The First Ingredient. Perhaps that should be easy but it feels very much like cheating, even when I have the kissing cuddly sparkly proof that it may be the best way to help Sarah too. Why do I need a noble reason like helping Sarah to take care of my own self more? Isn't taking care of me the best way to help everyone, because then no one else has to take care of me?

May you all have the time and clarity to determine the First Ingredient to your dream life.