Elise rode on the school bus for the first time today. As you can tell she wasn't at all thrilled about it. In fact she seemed terrified.
I felt like the worst mom ever.
Here I was putting my 3 year old (who doesn't understand much) on the bus, buckling her, and telling her she is going to preschool and waving bye to her. During that whole time she kept looking at me like what is going on, what is this place, who are these people, and where am I going.
Yep I felt awful and cried after. I kept thinking, who does that to their child? I felt so sad for her. I hate that I had to be in that position. I hate that I can't just keep her home with me like any other 3 year old. I hate it. It's hard leaving her with so many different therapists yet I know all of it is to help her. As much as I wish desperately that I could do it all myself, give her all the time and energy the therapists do, I know I can't and that's what I hate sometimes.
I know that God knows me and my tender feelings as a mom because Elise's teacher called me a little bit after Elise arrived to tell me Elise was safe and was doing great. That's all I needed to hear. It was like the Spirit was telling me that I wasn't such a terrible mom after all, that Elise did and would live through this experience and that it was all going to be all right.
This picture cracks me up.
Elise was being brave and figured out how to lay down in the water all by herself. She's never done that before so I was super excited! Sometimes I feel like the people on The Croods when the "new stuff" is totally awesome. This is new and it is totally awesome; I LOVE new things!
Her face was like this the ENTIRE time as she very, very slowly laid down.
It was really slow.
I kept thinking this was a great abdominal workout for her (she has very low muscle tone, so we are always trying to find ways to build muscle strength).
Elise is so stinkin' cute though! She was giggling almost like she couldn't stand the feel of the water, kind of like when you are being tickled, then she scrunched her eyes super tight and had her mouth open the whole time. I kept laughing to myself because I have never seen anything like it before. It was so funny. She experiences things way different than other kiddos and I enjoy the ride along with her.
Elise also figured out how to get up by herself AND climb out of the bathtub. This just shows that her motor planning is improving, something the therapist and me have commented on the last few weeks. Hooray for new things!
It was 1 year ago at this same appointment that changed my life forever. Another curve ball was thrown at me again today.
As Elise's pediatrician and I were discussing Elise and I was describing her more in depth she told me she would be surprised if Elise didn't have a syndrome instead of autism. I was surprised at her bluntness but not shocked. We have discussed here and there the possibility of her having Rett Syndrome, but until genetic testing is done, we won't know for sure. Testing is still on hold until we get an appointment (these appointments take forever to be seen!).
Elise's temperament, lack of motor skills, abnormal breathing patterns, and hand movements all point to Rett Syndrome. She fits the mold. The doctor said she doesn't have the classic autism behavior and there were a few other things that are steering her away from it. I am so glad she was honest with me. She is an incredible doctor!
Rett Syndrome is a neurodevelopmental disorder and can be diagnosed with genetic testing on the X chromosome. Rett Syndrome looks like autism, affecting primarily girls, but has quite a few differences. There are 4 different stages, the last one being motor deterioration.
Elise shows many of the signs but until testing is done I am trying not to think about it until we know for sure. I may be spoon feeding her a lot longer than I thought I would have to!
Elise's hands are constantly moving. These pictures show all the different hand movements she does all the time. The first picture shows her clapping and she claps a lot.
Her hands are in her mouth and she moves her tongue around...
they are slapping her head or brushing her hair back...
her right index finger is in her mouth then to the nose.
Elise turned 3 years old today. It wasn't the best of days for her. She cried a lot but in spite of that we still managed to have a pretty good day for her.
Brock is the biggest sweetheart to her. He volunteered to hold her hand and walk with her in the circle while the music played. When it stopped Brock handed the present and Bryn opened it and showed Elise, who really had no idea what was even going on. Bryn and Brock had a great time though! They love birthdays.
Brock got her a Baby Einstein book. He couldn't wait to read it to her.
I asked Bryn and Brock what they loved about Elise and why they are grateful she's in our family. They both responded with how much they love her giggles.
I asked that same question a few months ago. I was surprised that neither of them knew why they loved her. I realized that was probably because she didn't "give" them anything in return. She doesn't play with them, she doesn't talk to them, or show much affection to them. I think what they are learning and what we have learned is that love really does grow by serving someone else. These kids definitely serve their little sister every day and I can see the selfless love grow in them for her.
She's pretty lucky as are we.
We feel so blessed to have this sweet angel in our family!
I LOVE being a mom to my 5 kids; one with special needs. There is no greater joy than being a parent! I love each one individually but this blog will mostly focus on our daughter with special needs and our journey with her. Thanks for reading!