Today turned out to be an awesome day. I needed an awesome day. I felt like I hit the wall a bit yesterday. I was feeling like I didn't have a place to plant my feet with this whole diagnosis stuff. I have been offered emails and phone numbers of mothers with children diagnosed with autism, much older children. I don't want to know about anyone else's road traveled. Everything I read says that the journey ahead is going to be very unique. I met a mom with a three-year old diagnosed with autism. I loved talking to her. I felt like we were on the same chapter. We had different interpretations of the chapter but I didn't have to deal with spoiler alerts from parents that have 'been there.' I may sound bratty right now, but I don't want to know about how they know exactly what I'm going through because they qualify it with telling me how hard the road ahead is. I don't want to be prepped for the road ahead with stories of struggle. I met a woman that was very sweet and compassionate but scared the crap out of me. She has a child with an undiagnosed severe developmental disorder. The first thing out of her mouth "Can she self-feed?" She goes on to tell me about all the services that are available to my 'special needs' child. And then she gives me some advice "Focus on your marriage. The divorce rate for children with special needs is very high." Okay, thank you. While this is a very good piece of advice I didn't want to hear it right now. This very sweet woman is coping with her own unique experience and I appreciate the advice but I didn't need to hear about divorce rates right now.
It reminds me of a quote from one of my favorite writers- David Sedaris. It was a short story about his mother's cancer battle and passing. He was tired of everyone trying to help him prepare for her death. He writes, "you can't prepare for famine, if you have never known hunger." He goes on to write that it is better to eat up and savor every bite. That is how I feel about the road ahead. Thank God I am not having to cope with something as serious as cancer but I am tired of well-meaning (very sweet) people trying to prepare me for what is ahead. I don't know what is ahead. And it isn't helping hearing about their struggles. Their struggles scare me and make me question if I am tough enough for the road they think I am on. I hope I am not coming off as ungrateful. Like I mentioned earlier, I hit the wall-which is why I needed today.
Sofie and I had a PJs day. I was tired of holiday errands and decided we just needed to play. The cold rainy day helped seal the decision. I spotted Sofie while she bounced on her trampoline for about a half hour AND she actually went down easy for her nap. VICTORY! I tried to begin some of Sofie's homework from the speech therapist-that didn't go as easy. I am starting a game with Sofie where instead of Sofie doing the sign for 'more' or pointing, she has to knock on my closed hand to reveal the object she wants. So far she gets really mad when I do it. But I try to remind myself that is how she felt about pointing at first. The game is supposed to lay the groundwork for the give-and-take of conversation. It's cause and effect. The therapist said anticipation is a big part of the puzzle. She gave me some hints on how to create moments of anticipation with Sofie. This idea of anticipation took this afternoon's playtime to the next level and officially made my day awesome.
For the thousandth time I started stacking blocks. And for the thousandth time Sofie quickly swatted the blocks away. I then remembered that the therapist said some kids will stack other objects. I had tried stacking random toys but I hadn't tried stacking books. So I began stacking books. "Mommy puts the book ON TOP..." Sofie didn't swat the books away but she didn't come over to me either. I wasn't very interesting, I guess. And then it dawned on me-anticipation. I have been performing this block routine for Sofie a thousand times but I never brought her into the performance. If you are watching a play you don't hop up on stage and join in. I thought I was acting out the task I wanted her to perform but she was just seeing a boring show. We tried forever with pointing in a similar failed effort. We performed 'pointing' countless times and it didn't mean anything to her. So I took the therapist's lesson to heart. I took the books and gave it another go but this time I added the important element of anticipation. "I'm going to put the book onnnnnnnnnnnnnnnnnnnnnnnn top. Mommy is going to put the book onnnnnnnnnnnnnnnnnnnn...." And I saw Sofie give me this big smile while she looked at the book hovering above the table. She knew I needed her. She ran over and pushed her hand on top of the book telling me to put it on the table. "....Top! Yay Sofie!" We did this a few more times before she lost interest. This was huge! She did something similar when she began putting toys in her toy chest. I hope that means we have cracked the code on stacking! I got ambitious and switched to legos. I was fully prepared for this to fall flat but she went with it! I said "onnnnn...." and she pushed her little fingers on top of the block to attach it to the lego base. I was so happy. This made my week! The lows suck but these little victories reinvigorate me instantly.
After the blocks we just kept playing and being silly. I took a little cup and asked Sofie to put her pacifier in it. I helped her the first time and then she did it on her own from then on. She was a little Bubu possessed after that; she started taking all her toys and tried shoving them into this little plastic cup. It was so funny. We can work on spatial relations another day. Today was just wonderful and it didn't start out that way-that's a wonderful lesson. This afternoon was filled with giggles, laughing and rolling around on the floor. We have already come so far from where we were a month ago. Usually at this time of day Sofie was off in her magical world. But now she was running around playing with me. And with all the silliness Sofie found time to do her new job. She has the thankless job of throwing her toys over the half-wall that separates her playroom and the living room. She throws them back and forth. Object permanence has been a bit of question mark for us. I laugh thinking of her throwing her Abby doll over into oblivion and then coming around the wall saying "Are you kidding me? They have an Abby in here too? Oh well, let me make this one disappear too. Back to the playroom...Wait! Are you kidding me? Another Abby!?"
Today was great. I needed it. I'm going to go to sleep happy. Tomorrow is more therapy. Live. Love. Repeat.
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