So many things in my life are the best thing ever. Being born to my parents was the best thing that could have happened to me. As was meeting E and G, my dear friends that I have had since I was 4. Meeting Carl was the best thing ever. Deciding to be a massage therapist and then discovering the Alexander Technique were the best things ever. Having Sarah just as she is was the best thing that could have ever happened to me. Having Amy just as she is was the best thing! Finding our current house was the best thing! Running a Son-Rise Program continues to be the best thing ever. Having Sonia join my efforts is the best thing! Having my generous aunt and uncle as benefactors for our program is the best thing! Discovering Zumba has been the best thing! My substantial community of family, friends, professionals, volunteers, and helpers has been the best thing! I am sooooo amazingly blessed and I love the idea that so many parts of my life can each have been the best thing ever. They can continue to be the best things ever. There are certainly challenging moments at least several times a day, but I also have so many moments where I am so deeply grateful for my amazing life that I think I will burst.
After my last update, my mom pointed out how miraculous it is that we now chuckle over Sarah sneaking food. This is a child who used to seemingly not want to eat. Many people use food as a reward for other things. I used to use other things as a reward for eating. I would sing songs and be silly to get any bite in her mouth. I would walk or drive around and around and around. That was a handful of years ago, but at the time it was so real that I could only dream of a time when we would look back at laugh. How amazing that we are at that time. I still have ambitions for increasing the ease with which Sarah consumes a balanced diet, but those are ambitions of how fun and creative I can be and aren’t born of a desperate fear about keeping my daughter alive. How wonderful!
I have continued to read Raun’s book (Autism Breakthrough by Raun K. Kaufman) and it is sooooo good. It is so good to be reminded of all the fine details about Son-Rise and that attitude of love, acceptance, creativity, and hope. I love the reminder that it is not about changing behaviors; it is about helping Sarah want to connect more and more fully with people and that any behavioral changes come from a desire to connect. Raun posted an online reminder of the difference between celebration and praise that is a helpful reminder for me:
“Praise = the use of an approving statement as a ‘reinforcer’ to get a child on the autism spectrum to do what you want.
Celebration = the outward expression of a genuine feeling of delight and gratitude for what your child just did.”
I love this. I think almost all of what Raun writes about how to relate to children on the autism spectrum can be applied to relating to all kids, maybe all people, and all challenges.
This weekend my mom and step-father were visiting. We had a lovely time. When we went for walks, the girls almost always refused to hold my hand and insisted upon holding the hand of Mom-Mom or Pop-Pop. Amy and Mom-Mom went fishing in the back yard many times at Amy’s suggestion, using sticks as fishing poles. Pop-Pop brought and assembled a Thomas the Tank Engine electronic racing toy. I feel proud of the collective clear thinking and team work on how to interact around and through an electronic toy that Sarah adores. Mom-Mom and Pop-Pop introduced the idea of the trains needing to rest and that Sarah could count to a certain number while waiting. We elaborated into singing songs. At one point I said the trains needed a lullaby. Thank goodness for my delay in starting singing. Sarah started singing “go to sleep my little Sarah…” which is a song Carl used to sing to her when she was veeeeery little. He also sang it to Amy some when she was a baby. But I think it has been at least a year if not two or more since Sarah heard that song. Other train interruptions included needing to give the trains pretend drinks of water and Station Master Wellington needing to write numbers on a train schedule. When it was dinner we had to make our way to the dining car, wobbling some along the way and nearly losing our balance! A hilarious moment occurred after dinner last night because the drone of the train motor was solidly going and then Carl called to Sarah that dessert was ready. The motor stopped instantly.
Yesterday we went to the spring carnival run by CMU students. Amy really wanted to go on a spinning dinosaur ride (akin to spinning tea-cup rides), until it started and then she wanted to get off. She made it through though. Then she wanted to go down a very big slide that was so big I made Carl be the one to take her. She was rather scared and shocked at the end, but she made it. Sarah loved riding the tractor ride and the ferris wheel, doing each twice. Part of the carnival involves thematic booths made by students. Amy’s favorite replicated the play area at a St. Jude’s hospital. It was filled with dolls and small toys. Amy and I went there 3 times and spent many minutes hanging out. Whoever thought to create a home away from home for small kids at a carnival was a genius.
On the drive home from the carnival, Carl discovered that Sarah can open the bottom buckle of the carseat that is in his car. She can also almost unlock our back screen door lock, which has been my back-up because she can open the regular door lock so easily. And she can open and close the new bubble bottle easily. Each step of independence is so awesome and it keeps us on our toes.
Apparently, Sarah can play a regular game of Candyland! I had no idea. Whenever I have tried it has felt like I was forcing something, but Sonia informed me that she and Sarah have played a few rounds of the game.
As you know, one of my struggles is in how I respond to yelling, screaming children. This past week I have felt a true internal shift in how at ease I can remain lots of the time. Not 100% but it is notably different, at least on the inside. The thought that actually seems most helpful for me when Sarah starts screaming is that I will not negotiate with terrorists. I know, perhaps it is an extreme and ridiculous thought. But what it does is remind me to just wait and that there is no point in trying to speak or reason through the screaming. And it helps me not take it personally so the calm waiting can be more true calm instead of my trying to seem calm but not really feeling that way.
I hope you all are having lovely weekends and that something is the best ever.
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