Feeling Like We Don’t Belong

I took Rebecca to story time this morning as I usually do on Thursdays.  We walked in and sat on the floor with the rest of the moms/grandmothers and their toddlers.  A few minutes into story time Rebecca was curious and got up to go look at something at the back of the room.  A child was sitting on the floor with her legs out, and Rebecca walked right into her and fell down.  Rebecca got up and continued walking to the back of the room, she grabbed a piece of paper, and started walking back to give it to me.  She tripped again over the same girl’s legs and fell down.  This happened a few more times within the next 15 minutes or so.  Rebecca would be walking, and she would walk right into someone who was sitting on the floor and she would fall.  Then the toys came out and the kids started playing.  Rebecca got up to walk towards me and she must have fallen four times over toys just to get to me.  I don’t think she saw them.  I don’t think she saw the toys and I don’t think she could see the people’s legs on the floor.  She was looking straight ahead while all of this happened, and I think that the lower part of her field of vision just isn’t there anymore.  I was heart-broken.  I scooped her up and excused ourselves and headed to the car where I just sat and cried.  Is her vision already deteriorating that much?  I know she doesn’t have the best night vision, but during the day, I just thought we had more time before it affected that.  I had to leave story-time, I felt like no-one understood, and I felt like we didn’t belong there.

Last week I took Rebecca to Tumble Time, as it was recommended by her PT at Children’s Hospital.  Rebecca’s vestibular system is non-existent.  Basically, what keeps you and I upright, is not in Rebecca’s make-up.  She has to work extra hard just to keep from falling over.  So for therapy, her doctors have her doing PT on surfaces that have a little “give”, such as mats like they use at Tumble Time.  Rebecca was standing on one of these mats last week, and the instructor came over and started jumping up and down on the mat next to Rebecca saying, “jump Rebecca!”.  If she only knew how hard it was just for her to stand there.  But people don’t know, and the don’t understand.  I explained to the instructor after class, without going into too much detail, that Rebecca’s balance is not good and that we are taking the class to work on that.

I feel a little defeated today.  I feel like we don’t belong at Story-Time or at Tumble-Time.  Should I ask the parents at story time to have their kids move their legs in if they see Rebecca walking their way?  And to pick up the toys that they leave on the ground because Rebecca can’t see them and may fall over them?  They’d probably tell me to get bent.  The world isn’t going to adapt to us, and I don’t yet know how to make it work.  I am struggling today and I don’t have any answers.  I don’t know what to do or how to handle these situations.  But this is just the beginning, and I am going to find us in these situations more and more, so I need to figure it out.

4 comments

  1. I am so sorry Beth. I have no answers but always hear to lend an ear or a hug. We love you and your family so much! ❤️ I think if after story time you speak with the other moms about your situation they would have no problem to adapting to Rebecca’s needs. I think you should keep bringing her. Good for Rebecca and hopefully good for the other kids tooo!

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  2. Beth, you are right, you are going to have days like this and you have every right to break down in tears! It’s okay. You and Jake are doing everything you can for Rebecca! Keeping this blog and keeping it real is helpful to other families going through the same and for some of us, including myself, who need a reality check once in a while! I wish I had the words to make you feel better but I don’t all I can say is that you are an amazing mom and I love you very much!

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  3. I completely understand! From one Usher mom to another, it’s not easy watching our babies struggle with small things like walking. Gunnar is always tripping and falling. I always try to explain to teachers, instructors and other parents but it’s hard and sometimes I just don’t have it in me. You are doing amazing. Even though it is hard, Rebecca is getting a lot out of all the fun places you are taking her. I’m here if you ever need to talk.

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  4. 😘😘 we’ve all been there. I’ve got 4 kids, 2 girls with Ush1b. The balance thing sucks BUT. Keep going to PT, it really does help. My 10 yr old rides her bike, no training wheels, around our neighborhood. She even roller blades! Start teaching your daughter now how to scan her environment as she’s walking. Go back to story time. Practice there. Hold her hand, and tell her, “Look! Look where you are going! See the legs! We’ll see them, and step over!” You belong at story time, and so does she. She belongs wherever she wants to be. My kids have participated in many activities….balllet, basketball, swim lessons, horseback riding. I usually apprise instructors ahead of time so they are aware, esp for safety issues. I remind them to look at my kid so she can see their face when they’re talking, and quickly cover how the vestibular stuff might impact the activity, and I wrap up by asserting that my kid can do the thing.

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