January 31

Nine years ago today Sarah made her debut into this world two weeks early and with a bit of unexpected (sometimes stressful) adventure along the way, setting the tone for the next nine years. What a feisty, determined, passionate little bear she is. What a blessing to have her in our lives exactly as she is. She has brought out the best feisty, determined, passionate (sometimes grumpy) mama in me. Through her, our small family team has welcomed an amazing amount of wonderful love and support into our home in the form of some of the most amazing people I have ever known. We are so deeply blessed. What a beautiful Sarah-Rise it has been and continues to be. See the gorgeous light? And the clouds that add to the beauty?

A brief look back at our beginnings… Sarah sat independently by 12 months, crawled at 18 months, and walked independently just before turning 3. I spent hours in the early days despairing and worrying about how she would ever learn to roll over, crawl, or walk. She was tiny and was diagnosed as failure to thrive (with the added line “feeding mismanagement” because that surely helps any parent move forward confidently!). She didn’t seem to like to eat solid food and my milk supply stopped working sufficiently around 6-9 months. Feeding times were crazy stressful and often involved me cursing and crying in the kitchen. I would sing and be silly for each bite she would eat. I scoured the grocery store shelves for anything with high calories regardless of nutritional value. I was desperate to avoid a feeding tube. I would walk her in the stroller for hours because that is when she would eat best. We counted calories down to each goldfish. We did avoid the feeding tube and she even started to enjoy eating but was still tiny and slow to gain weight. I fantasized about a future when we would look back and laugh about when Sarah didn’t like to eat. Amy was born when Sarah was 4. Sarah could point to pictures of what she wanted to eat. She could sign many words. She could make the first sound of many words but could only say maybe 5 complete words. I was wondering if we did need a feeding tube to give her sufficient nutrients to grow and learn. I still felt desperate. I had known about the Son-Rise Program from the time I went to college but I hadn’t really fully understood how it could help in so many different situations. I called as a last ditch effort to help with Sarah’s eating situation and with her language. Our life was forever changed for the better. Bricks of guilt and grief fell away from my shoulders during the Start-Up training. As soon as I came home I started asking Sarah for language differently, modeling language differently, and being with her differently. Her language started exploding. With the framework and support that we created and welcomed into our lives with Son-Rise, Sarah became potty trained, we dramatically changed her diet, she was able to come off all medications, and our whole family started eating more healthily. Sarah still has specific food preferences but she eats easily and willingly and I no longer stress about how much she eats (except to make sure she has energy for kindergarten!). Sarah’s eye contact improved immensely and she learned to play imaginatively. She learned to read. She is attending half-day kindergarten with 3 neurotypical peers 5 days a week with no personal helper. And she is still a growly feisty bear especially in the morning when she wants the sun to go back down. Thank you Son-Rise. Thank you team. Thank you Sarah.

A brief note from our week…Friday morning I went to donate some odds and ends to the Center for Creative Reuse and I came home with a clock. I wasn’t looking for it but when I saw it I knew it was for us. Sarah has been loving the idea of a grandfather clock, of clocks in general, of pretending to be various clocks (such as a cow clock when she is wearing cow pajamas). She was so excited when she came home from school and saw the new clock. Her clock. She even wanted to nap next to it that day so I put it next to her bed. I hadn’t known how to decorate her cake for today but now I realize it will of course be a clock face, with the 9 as the only number written out.

May your own personal dreams become reality, be they clocks or otherwise, be they feisty or otherwise, be they bears or otherwise.

January 24

Sarah has been totally rocking her coat zipper. She does it all by herself almost all the time now. One thing that may have helped is that with my horrendous cough lingering and being horrendous at terrible times (in the waiting room at the pediatrician’s office while waiting to find out that Sarah had pink eye, in the hall outside the pediatrician’s office as we were getting bundled to leave) I wasn’t very helpful when it was time to do Sarah’s zipper. I was too busy coughing embarrassingly, uncontrollably, nearly pukingly. But Sarah can do her zipper! And I am almost better (it was a virus, confirmed by two doctors because I didn’t want to believe it the first time), as is Sarah, as is Carl. Amy just began a cold a few days ago. I don’t know whether I hope it is the same thing I just survived so that I am not at risk again or whether I hope it is different because I wouldn’t wish what I had on anyone. Luckily it seems that I got it the worst out of our family members. 

Yesterday Amy and I went out in the snowstorm to her doctor because I was worried she had pink eye (she doesn’t). During our absence, Sarah and Carl were talking about Sarah’s new cousin, baby A. Carl suggested that Sarah could pretend a Pooh stuffed animal was baby A. Sarah took this very seriously and was very tender and careful with her baby. She spoke to it, she carried it carefully upstairs, she put it gently in bed and then carefully snuggled up next to it for a nap. Sooooo sweet.

Next Sunday is Sarah’s birthday and when a card arrived yesterday I let her open it. She read the first couple of lines independently. It said “Dear Sarah, A star is what you are…” She read all of that before wanting nothing more to do with it. I know she knows most of those words but I didn’t know she knew “star.” 

I am having many conversations with myself about how today is going to go. I want to be super industrious and clean and organize my house mightily. I want to have an orderly desk. I want to have all my daily chores done early. And…I want to sit on my butt and read and not deal with the perpetual mess at all. As with most days, I will probably land somewhere in the middle. It is just interesting how many solo conversations happen as I move through the day. Whether it is about eating choices or cleaning choices, I have certain ideals that I think I should attain or want to attain but then in the moment I want an experience of ease and joy that seems to more easily come from other choices. All of this is intensified after being sick and still recovering. The mess has silted in and become more of a permanent fixture so there is both more and less urgency to deal with it. I have barely exercised in the past two weeks and am yearning to do more and yet I recognize that I still have to go slowly and gently and that sitting and reading is an important part of recovery. There is also the bookending of my sickness with Amy’s sicknesses, meaning that she wants to be snuggled with me more often. I am happy to oblige because it is a lovely feeling to sort of fix something for someone just by being me and being there. This does not, however, lead to exercise or cleaning or organizing my life or doing things on my list for the day. One moment at a time. Maybe I’ll just go read for a few minutes now...

I fervently hope you are all well.

January 17

I have a nasty cough that has been mightily interfering with sleep. I don’t understand why it gets worse at night. I understand it getting worse when I am horizontal, but why also as the hours get later? Sarah is sick too, though it is mild so far. Carl seems to have gotten over his version of whatever we have quite quickly, thank goodness. Amy had an ear infection a week ago but is well. I seem to have it the worst, sometimes coughing uncontrollably. When I’m not coughing though I can feel as if I am totally well, just tired. It is an odd mix. I am getting one heck of an abdominal workout.

Sarah’s nights were better until she got sick, and that included time off from eggs and time with eggs reintroduced. 

Sarah zipped her coat all by herself on Wednesday. I know she has occasionally done this in the past but it isn’t something she can do regularly. I think seeing  the OT helps me remember to ask her to do more fine motor things by herself and to give her the time and encouragement to do practice. It is also exciting to watch the OT do certain activities and to know enough now to understand what she is doing and why (such as tipping Sarah slowly from side to side while having her pick up a beanbag so that her reach crosses her midline; this helps with all sorts of brain coordination and balance).

I did the ATEC online autism evaluation checklist again. The last time I did it was a year ago. I try not to overthink my answers and certainly there is some subjectivity based on how much I deem something to be a problem. Disclaimers given, her score was a 25. A year ago it was 35. This seems to be quite amazing to drop 10 points. Even if I adjust for the places where my answer could easily have been different, that still would be a drop in 7 or 8 points. Wow. That means she is in the most mild end of the autism spectrum. I know that being on the spectrum is not the only thing to define Sarah’s delays and challenges, but still. Still. I’ll take this and run with it.

I hope you are all well.

January 10

We are taking a break from eggs. Sigh. I sincerely hope that the dramatically increased frequency of Sarah’s middle of the night parties was just due to Christmas excitement, travel excitement, and getting back in a normal routine kerfluffle. In case it was food related, I thought one plausible culprit was eggs so we are removing them for at least a little while to see if it makes a difference. Since removing them from her diet we have had two good solid nights of sleep from Sarah. This could also just be finally settling into normal home life. It isn’t enough yet to prove anything in any direction. 

Sarah has had a couple more small servings of ghee and two spoonfuls of lactose-free, homemade cow-milk yogurt. So far so good. 

On Monday Sarah had her first Occupational Therapy (OT) session at the Children’s Institute. I love the therapist assigned to us. The first session was all about building a connection through play that also helped the therapist ascertain Sarah’s strengths and skills. Sarah did wonderfully. She had an 8 or 10 loop conversation with the therapist. A loop is when person one says something and person two responds. (I think this is a loop anyway). Sarah followed the requests of the therapist easily with very little extra prompting. She has also been asking to go back every day since then. 

Amy has been sick for part of this week so there has been lots of cuddling time and the nights haven’t been as smooth as usual on her side of things. So I am a tired mama and it seems impossible that it has only been one week of “normal,” because it wasn’t really normal and Monday feels forever ago. I thought there were more things of note, but I can’t think of them. I feel like I am in slow motion moving through sludge. I want to nap and ignore all the mess and I also want to go into super-duper cleaning mode. I will probably land somewhere in the middle. The most important thing is to keep myself hydrated, rested, and well. I even put that on my to-do list for the day to make sure I don’t ignore my basic requirements. The mess will certainly keep and in a year I won’t remember it anyway.

I hope all of your snuggle-tanks are full.

January 3

On New Year’s Eve we did an early count-down celebration with the girls. At the suggestion of a friend who was visiting, we asked them if they had a favorite moment or thing from the year that they remembered. Amy said it was dressing up as a ballerina for Halloween. Sarah thought for a while and then said the ball pit at Idlewild. Wow. I am impressed with both of them. What is notable about Sarah’s answer is that she came up with her own instead of saying something similar to Amy’s. 

The thing that most stands out for me when I think of 2015 is that it is the year Sarah learned to read. We are no longer doing word cards. For Christmas I got Sarah a writing tablet that is basically an electronic slate. There is a stylus pen for writing and then when you want to clear it you press a button on the screen. That is it. I thought she might like to practice writing on it. I didn’t predict how wonderful it would be for practicing reading. I can bring it to wherever she is and write messages to her and she can read them, usually without much help. Having it be electronic means I don’t have tons of paper to recycle or store. Having it be so much simpler than an ipad means that Sarah isn’t tempted to do anything else with it because there is nothing else to do. 

Our Christmas travels were wonderful and sometimes challenging. The girls are amazing travelers now and the only difficult part of driving long distances is getting them back in the car after a rest stop. The most challenging parts overall were probably the nights. We celebrated our Christmas at home a day early and then at my mom’s on the actual day. This meant two nights where the girls were eager for the next morning. Sarah spent most of the day on the 23rd saying she wanted to wake up early. In the middle of that night she woke up and wanted to open presents, but it was truly the middle of the night. She finally went to sleep again. I woke up at 5 for no apparent reason and couldn’t get back to sleep. Amy woke up at maybe 6 and she and I opened our stockings together. Carl and Sarah slept in till 7:30. So much for Sarah waking up early. Since the girls can read all of our names they made fast work of the pile of presents. Then we drove to Philadelphia. At bedtime on the 24th I made the mistake of mentioning that the next day was Christmas. Half an hour after the girls were in bed they emerged ready to start the festivities. We finally got them back asleep. At 4:52am on Christmas morning Sarah decided it was time to get up. I said no. In hindsight I should have just gotten up with her easily so that only two of us would have been awake. Instead, my resistance led to Sarah screaming and then Sarah, Amy, Carl, and I were all up. We had a small breakfast. Carl and Sarah went back to bed. Amy and I stayed up. We learned our lesson by the time we did Christmas at my dad’s house so presents were opened in the afternoon. 

Normally Sarah only has middle of the night parties (that last 1-2 hours) once or twice a month. Starting with our first Christmas eve and continuing through last night, the parties have been roughly ever other night. I am hoping this is just due to travel and excitement. My concern is that it is food related but we have added several new foods (some small) and since I didn’t notice any problem with her skin or belly I thought we were fine. Maybe we are. 

This whole food business is so interesting. Every time I add something new I feel emotional in multiple ways. I have low level panic and embarrassment over adding something processed in any way or not homemade in every way. I also feel relief at expanding Sarah’s options so that she can travel more easily and eat at other people’s houses or restaurants more easily. While the pinnacle of healthy eating might be for me to make absolutely everything from scratch, I’m not sure that is the pinnacle of emotional or spiritual healthy living, at least for me. I have to repeatedly counsel myself that it is ok that she is having whatever new thing she is having, assuring myself, “it is food! it is ok! it is even healthy food by most standards! The worry is because such food was off limits for so long but it is really really really ok. It is food.” I have to say this even when the food in question is a banana. Or an egg. Or homemade whole wheat bread. Or organic fruit leather. The new things Sarah has had since I last wrote: fruit leather, chocolate ice cream made with coconut milk but not made by me, puffed rice cereal, Grey Poupon mustard, Heinz ketchup (regular with corn syrup (ack!!) and organic with organic cane sugar), fries at rest stops (made with either canola oil or corn oil) and  ****ghee*****!!!!!! The ghee was yesterday. That is our first tiny step towards dairy. So far so good, unless the night party was related. But night parties happened even when her food was unchanged for months on end it is hard to know.

Sarah’s fingers have been in pretty good shape. I took her soap with us on vacation and even brought it into the rest stops with us. 

I just read Glennon Doyle Melton’s Carry On, Warrior. I believe that a friend recommended this to me years ago and then it sat on my shelf for a while. I am so glad I read it. It is beautiful and raw and honest and inspiring. I highly recommend it for anyone struggling with anything and seeking to be kinder to themselves while being fully fallible and human.

Sarah is such a delightful social person. She certainly still has times of being exclusive but they are rare. If grownups are around then she wants to be talking with them, climbing on them, connecting with them. This isn’t new, but I have been appreciating it and marveling at it. 

Amy has started to be able to open doors by herself. This is awesome. Her coloring is also getting much more careful and specific when she wants it to be. 

As we navigate re-entry into regular home life I am trying to be gentle with my impulses to either ignore the mess or to get a dumpster and throw out half our our belongings. New toys and books are so wonderful! I just need to weed out some of the old stuff (at least storing it in the basement) to make room. In past years I have done this preemptively and that would have been helpful had I done so this year. 

I am deeply aware of how blessed I am in my amazing life filled with deeply amazing and wonderful people. Thank you all for being in my life. 

I hope all of you are having whatever kind of weekend you need.