I realize I’m long overdue to give an update on Vivian’s preschool experience. Mine, as well.
Orientation. Gratefully, my husband came with me. I walked in and couldn’t help but look around. I tried to see all the other children’s disabilities. I don’t want to sound selfish, I did this to look for someone similar to Vivian.
I was desperate to find a parent who feels the way I do. Who’s going through what I am. I’ve basically given up. I take each day as it comes – doing my best to keep trudging forward. Doing my best for my daughter and family. This is all I can do.
At orientation I find myself thankfully completing paperwork. I notice Viv head towards a boy with cerebral palsy, who wears a helmet. As she looks at him with her head cocked sideways and reaches to find out what’s under there – I’m filled with pride. I hope his parents are happy someone is being so gentle with and paying attention to him that they are proud, too. We of course stop her from taking off his helmet, but I think it’s a good first step.
There’s a big smart board in the room. It’s the first I’ve ever seen, but it’s a huge touchscreen for kids. We were waiting for our little miss technology guru to figure this out, but she had to be shown it much later. We also learned she would tolerate cube chairs for circle time. Good luck getting her to stay still was all I could think! Dave and I observed her for a while. We watched as she took to a brunette girl in her 20’s – much like her regular babysitter, Becca. It was great to see her making a connection – although we’re not sure the girl knew what to think of Vivian taking to her so well!
A week or so later, I sent her to school with a little list:
I don’t think this was bad! She had a few days of summer school and then it was ready for the school year to begin on August 26.
Vivian certainly lived up to this holiday’s name today! I made sure today was a mother/daughter day. We played outside, went for a walk, ate breakfast and lunch together. When it was time for Dave to come home from work, I wanted to (hopefully) surprise him.
Vivian does everything on her own time. If we try and force her to do something, most times she ends up resisting for longer out of fear. We have had this walker at the house for a few months now. We have gotten her to use it for very short walks around the house. Never would she walk without our hands over hers – just as she won’t when walking without the walker. We knew not to push her too much, but she was enjoying taking walks up and down our court, that I decided to try using the walker outside.
Sure enough she started walking, while I slowly moved my hands up her arms, then down to support her trunk. Once she was comfortable with that input, I then went to simply holding the back of the walker. This is the closest Vivian has ever come to walking independently! Little Miss did not want to head towards home, she wanted to keep going. A temper tantrum in a neighbor’s yard ensued, but luckily her daddy had just gotten home and was able to coax her to turn around. We finished our walk and went inside to cool down. We ended up going out again this evening – here is a video of her walking all on her own!
All I can say is I am so incredibly proud of her! I have been struggling, wondering what the next step will be in terms of her physical development. Now I have my answer and feel she is one step closer to physical independence!
My fears and anxieties have shifted in the last four years. Pretty much all of them are now focused around Vivian. This is one of my biggest ones:
The thought of my daughter being a special education student scares the shit out of me. I can now handle public speaking on a whim, interacting directly with executives, flying on a plane all with no problem. These are things that used to require medication to get through. Now, the mere thought of this orientation and her future in school elevates my heart rate and sends tears straight to my eyes. I try to avoid the topic with family. I put on a big smile and nod my head when I talk about it with her early intervention coordinator. I am not afraid to admit it here. I am scared. Frightened. Sad. Terrified. Upset. Every single negative adjective and I don’t know how to turn it around.
Orientation is Thursday and I’m not quite sure how I’m going to make it through. I always try and stay strong for her, to be positive for everyone. This will certainly be a test. Stay tuned.
Since fall, Vivian has been going to a motor group twice a month. It incorporates occupational and physical therapy with the early intervention program. Motor group did not start off very well. She was much more interested in exploring the classroom and trying to plot her escape than interacting with her teachers and peers. Group time pretty much consisted of myself and/or Becca trying our hardest to get her to sit still and participate. Although baby girl can’t talk, her crawling to the door and banging loudly to let her out was clearly telling us she didn’t want to be there.
Over time she has done much better. We got her to sit with us while we sing and act out the opening song “the more we get together”, instead of her screaming as soon as the music starts, trying to kick and push her way out of our laps. She still doesn’t fully participate in all the activities, but every class she improves.
This past Friday they wanted the kids to all sit on the green row of squares on the carpet for the song. We got Vivi to sit down, then the music started. I watched in amazement as she sat still, on her little square. Add to that, she starts trying to move her hands in circles as the music starts. Then the CD skips, she claps because it’s over and off she goes. Take #2 for the CD and I am in awe of her once again. Here was my baby girl, sitting by herself, moving her arms, pointing, “dancing” to this song, just as we had been teaching her the last 6 months. This was huge. I’m crying as I’m typing this, just as I did on Friday. I had a big, sappy mommy moment where I was overwhelmed with how far she’d come and how well she was doing that I had to leave the room to cry. At least it was a good cry!! I definitely count this as a triumph, as simple as it is for most children, it was not easy for Vivian to get there. Way to go, baby girl!
I consider myself especially lucky. I have not one, but two wonderful moms. One by blood, one by marriage.
I tell them I love them all the time. I thank them for all they do. I ask them for help when I need it. I laugh with them. I cry with them. I am incredibly blessed to have them in my life.
I believe family is the key to it all. Not just moms, but especially moms. It scares me to think of what my life and Vivian’s life would be like without them.
How lucky is Vivi that each week, on Mondays she gets to see her Grandma and Wednesdays she gets to see her Grammy. I know she looks forward to her coffee with Grandma and her long walks with Grammy. I love to see and hear all the laughs being shared, the wonderful memories being made.
Words can’t express how much you both mean to me – thank you for all you do for us. I love you and Happy Mother’s Day (a few days late, in typical Gina fashion).
It seems like twice a year I have a really hard time with things. This time of year is one of them.
I am a teleworker and my office window looks out to a cul-de-sac. It feels like every year I sit there and watch kids slowly start to play outside more and more, day after day as the weather warms up. I wish so much that I would look out and see Vivian running around, having fun with other kids. Maybe next year.
I was in a slump. It felt like if a negative thought merely crossed my mind, tears were in my eyes. I’ve been like this for a few weeks now. Monday was especially rough. I came across a blog about a woman who had just lost her 6 year old son. He wore orthotics. He had low tone. He had global developmental delays. I felt that I could emphasize what she was going through, raising her son with these special characteristics, though he had serious medical issues, which Vivian does not have. Of course the what-if thinking began. I got out of the house that evening, just to clear my head. Later that night, Vivian was playing upstairs and started to play with this wooden puzzle that’s a big more difficult than the ones she’s used to. This one is Thomas the Train with no pictures underneath to match up and they’re pairs of opposites. I sat on the floor and watched as she put the first one in. “Yeeeaaa!!!” came from her biggest cheerleader. And one more piece in after that. It wasn’t taking her long at all to find where these pieces went. One by one she completed put every piece in the right spot. When she was done we were both clapping and I was almost in tears. She was so proud, as was I.
My train had taken a turn to negative town, but it was in that moment I turned it around. I told myself, as I’ve done many times before, to stop dwelling on what she can’t do. She had just done a puzzle that she wasn’t able to do last week. The night before, she knocked during Toy Story 3 when Lots-O did (not after, right on cue). When her daddy asked for a kiss, she wrapped her arms around his neck and pulled him in for a big one. Tonight during my goodnight hug I asked her to pat my back – she did. The joy she brings is overwhelming and sometimes I just have to take a step back and realize how much the little things add up to.
Thursday was Vivian’s ABR test. We were up and out the door bright and early, arriving right on time. Shortly after arrival we went back for the nurse to take her vitals and get ready for the procedure. My favorite part was when Vivian made a monkey sound and handed her magna doodle to the nurse – she wanted her to draw a monkey. The nurse obliged but was quite embarassed by the final product. I personally love seeing everyone’s different renditions of Vivian’s requested animals. The anesthesiologist was quite a character, yelling “weeee, weeee, weeee” while pushing baby girl to the procedure room.
One of us was allowed to go back with her while she was put to sleep and I was the lucky one. The doctor put the mask over her face, I gave her a kiss and left her to take a very good nap. About 45 minutes later the doctor came out to share the results. Vivian doesn’t have any hearing loss. Everything about her hearing leading up to her brain works. That’s good news, of course – but what gives? Immediately I start wondering what was wrong with her brain. I suppose we’ll follow up with a neurologist to see if there’s anything that can be done or if they can provide us with any additional information, but I doubt it.
I think either way the test results came back, I would be upset. If she would have had hearing loss, that would be unfortunate, but most likely there would be something we can do to fix it. Of course I wouldn’t want that, but part of me was hoping that maybe she just needed a hearing aid. We would pop it in and all the sudden I would have a daughter that I could get to know better. She could tell me if she’s hungry, full, thirsty, hot, cold, tired; what she wants to play with, what she wants me to draw…she could tell me she loves me. Was this naive of me? Yes. Of course. But some part of me has to remain optimistic. Now here we are again with no real answers. We’ll play the cards we’re dealt and make the best of everything.