Thursday, May 14, 2009


Lack of communication is just frustrating. (Is that an "Amen" I hear from my fellow CHARGE families!?!) It's been (and probably always will be) one of the most difficult parts of my journey with Maxwell.

As much as he can express himself to me (and I am incredibly grateful for his expanding signs), there are countless ways he all.

For whatever reason, it really hit me yesterday as I was getting him off the bus. I send him to school and then two hours later, he returns. I have no idea his favorite part of the morning...what kiddos were there today...what was funny...what he learned. Nada, zip, zero. I have a good relationship with his school team and we talk often. But boy would I love to hear directly from Max about his day and I wonder if/when that will ever happen.

Then yesterday afternoon, we were running errands and suddenly he was angry. And he began to yell, scream, and hold his breath. Sure enough he turns his infamous color of pale blue and becomes stiff and non-responsive.

I have learned to not completely freak out about this, but it still isn't easy. And let me tell you the looks we were getting from others. Wow. So of course, we quickly headed home and called it a day. What got him so upset? I have no idea.

Overall I feel quite blessed with the level of communication we have achieved. Truly amazing considering his challenges. (I still practically cry when he signs "chocolate" to stinkin' cute!)

But sometimes I am reminded of just how overwhelmingly far behind we are and how amazing it would be if I could simply ask him "what did you do today?"


Jen said...

I can only imagine your frustration. Max is doing exceptional but still I can understand wanting to know from him what goes on when you're not with him.

shawn said...

You aren't behind. He's ahead by leaps and bounds where he might be without all of your dedication. He's precious just as he is!
And not to make light... but as far as communication struggles? I have a husband. :)

ypersico said...

When Keith was in preschool - all the way through first grade, the teacher made a "back and forth" book. She would draw a picture and in a few sentences talk about what they did that day. She would show the kids at the end of the day what she had prepared. When Keith got home, we would look at the page together, and I would read it (later he would read/tell it to me) and hopefully he would elaborate, and I would have some idea what he was talking about. Then each night, I would draw something from our part of the day with some key words, and his teacher would sit with him the next morning and do the same. It really helped....I became really good at drawing the zoo and trains, and I cherish these journals ... <3 <3 ~y

Eva Nichole said...

Today at the zoo Eva was NOT happy in the morning I wish she could have told me why be we have no idea. It is hard and I work everyday on some kind of signing with her and pictures but I can not use pictures EVERYWHERE I go it would just be to much and to hard. I wish I had some kind of system I could use with her and one day it might happen.
Crystal and Eva

hannah m said...

Sweet friend, I totally hear what you're saying. I don't want to sit here and write platitudes - because it's all so complex - but I just want to say that from where I sit, your connection with Max is amazing. And beautiful. And deep. And strong. And while you and Max are working on getting to the stage where you can chitchat about the minutiae of the day, your connection is real and meaningful.

I love the journal idea - I'm tucking that idea away. I think it could be so good for your mamaheart, and I bet Max would love it, too.

Lots of love. And a big, big hug.

kanda said...

When my non-verbal daughter was 3 and got off the preschool bus one day, she had a giant bruise on her face and a bloody lip. The bus driver said she got on the bus that way. I called the school and the teacher denied that was injured at school. I had no way of knowing what had happened to my child, where it happened, or how severe an impact it had been. Did I need to take her to a dentist? Did she hit her head in the process and need screening for head injury? Had she fallen? Been hit? I could see the dried tears on her cheeks so I knew she must have cried -- how could none of the adults responsible for her care not have noticed? I was furious.

mama to jayna and ryen said...

I can really relate to this post. After the first week at preschool Jayna's teacher and I chatted and she actually asked me if Jayna liked school. I told her "she hasn't developed the ability to communicate that way yet" if she didn't already know that? It made me doubt her teacher's abilities for sure...and it stung that Jayna could not tell me how her day went.

ladergurl said...

Hello Amy and Max!

I have not seen your blog in quite some time. When we switched computers over 18 months ago my bookmarks went with it. I thought about Max today and decided to google and see if I could find him.

You can imagine my surprise when I saw the big boy on the home page! Max, buddy, you have grown up quite a bit! You are so handsome and I am so happy to see all that you have accomplished!

I wish you all well and I hope to keep up with Mighty Max!