Sunday, January 31, 2016

I have a question...


Max and his homebound teacher just finished A Long Walk To Water.  It is the story of one of the Lost Boys of Sudan who came to America, but made it his life's work to provide safe water for his home country.

Max really enjoyed the story of Salva and how he helped his people.  He told his teacher he liked the book and it was interesting.

On Tuesday night Max stayed up ALL NIGHT! I thought for sure he was going to be sound asleep for school.  But as it turned out, it was his best day in school so far this year.

His teacher had worked on setting up some choices in one of his communication apps for the ipad, ChooseIt Maker.  It allows for Max to put some thoughts together, but they are not his own original thoughts, it's more like multiple choice.

He's used the app for other projects, but he didn't want to use it to talk about the book.  He asked instead "Ask me a yes/no question."  I asked him if he meant to say that and he said it again, "Ask me a yes/no question."  His teacher came up with some yes/no questions and he answered all of them.




He answers, yes and noppe - we have to phonetically spell some of his words so the computer will say them out loud correctly.

After he answered her questions, she asked if he was ready to use the ipad app, and he said "I'm not up for this right now." "I feel pain. My Back hurts." So it was time to move on from answering questions and help him get repositioned.



What he moved on to was so great, because his speech therapists have been working with him a lot on trying to get him to ask questions, rather than playing 20 questions to figure out what he's trying to say.  He asked his teacher, "Can I ask you something? What you people."



We were talking about him meeting his new teacher - since there was a new SSN teacher starting mid-year who needed to meet him.  He was asking what people? Then he asked,  Mr Johnson? Who was his teacher last year.  I told him no it wasn't Mr. Johnson.  Then he said My Debbie.  That's his homebound teacher's name.





My DebbieDebbieDebbieDebbieDebbie.  That made her smile and I assured him that yes, Debbie was still going to be his teacher.  He wanted to be sure we both knew she was his teacher!

Debbie asked him if he had any questions he would like to ask one of the lost boys of Sudan after reading the book.  He said "I want to turn on some music! people I have a question. Can I ask you something? people"  All of this was leading up to, and prompting us, the listeners, that he was giving us context for what he was going to talk about.


After people he said, Miss Laura Miss Laura Miss Laura  - I had to ask him a few yes/no questions to figure out he wanted to ask one of the lost boys if he knows the song Miss Laura sings to him in music.  It's an African song and he always enjoys singing it with her.

Once we figured that out, he was on to asking what a lost boy would eat, and does he like pizza, pizza, tacos, pizza, tacos, pizza.  And then he has to always add in he likes his friends - in this context, that's classmates some he knows and some he doesn't because he's had such infrequent contact with them this year.  He said he wanted to ask his friends if they like pizza too - a great question to ask new friends!  For a kid who doesn't eat anything by mouth, he certainly likes pizza!



 His teacher was feverishly writing down Mr. Jabberwokie's stream of consciousness and he wanted to make sure she was listening when he asked "I have a question. Can I ask you something? work what people Debbie Debbie Debbie"
The context here is he wanted to know what the lost boy does for work.

His teacher asked if he was finished with his questions, and happy with them.  He answered yes yes yes.  Then gets in to his Santa Claus words and says "I've been great this year play"  Which cracked me up.  I told him he absolutely had been great, and I'll make sure Santa knows.  I think after this he asked what games they like to play, but I didn't get a picture of that.  He watched a video of the lost boys of Sudan singing and playing a game, then asked after about "play a game".


For a boy who had been up all day the day before, and all night he really surprised me with his school work that day.  I was SO surprised!  Not that he is so smart...I already know that! It's that he had any energy at all to not only do school work and do it so well, but he had music before and art after.  He did great in all three. 

At the end of their time he told Debbie Debbie Debbie - "work I want like"  He loves to do work. And he hasn't had a lot of it to do this school year, as not a lot has been sent home to him.  We're hoping a change for the better will be coming with the new SSN teacher to help facilitate that.   


He loves it when he is able not only to communicate, but he knows the listener understands him and acknowledges that he knows what he's talking about.  It can take an effort to learn Max's way of talking, but when he lets you in to his beautiful mind it's such a special treat.  

Monday, January 18, 2016

MLK, Jr. 2015...


This quote makes me think so much of Max.  

“Everybody can be great...because anybody can serve. You don't have to have a college degree to serve. You don't have to make your subject and verb agree to serve. You only need a heart full of grace. A soul generated by love.”


― Martin Luther King Jr.

You can read about Max's past MLK Day posts here and here.  And this post gives us a little more of a glimpse into his incredible heart when it comes to Martin Luther King, Jr. and civil rights.

This year, Max's school connection has been very poor.  It makes me upset to even talk about it so I'm not going to hash it all out here, but suffice it to say he had a much better experience at his previous school and we wish daily we could have kept him there all the way through his schooling years.  His homebound teacher read him a couple of books about Martin Luther King, Jr. this year, but that's as far as the instruction has gone.  So, we're picking it up and giving him the full month of learning about MLK like he likes.

Yesterday, we took him to the Martin Luther King, Jr. Memorial in Denver.  We were in Denver and told him we could pop by because it has been SO COLD!  We got him bundled up and walked over to the memorial in the blustery wind.  He was telling us all about it.  There weren't many moments of silence from him.









Tonight, Max is having a very special friend over to talk about Martin Luther King, Jr., his neighbor Neal.  Neighbor Neal marched with Martin Luther King, Jr. in Selma and he's going to come over for dinner and tell Max his stories.  We're going to watch his favorite speeches and we'll read another one of his stories to him.  We still don't know exactly what has sparked in Max such a love for the words and life of Martin Luther King, Jr. but we will continue to honor that life with him each year.  


Friday, January 8, 2016

Getting on with it....

I've been processing a post for a week.  Something I've debated writing about because Max's page is usually very upbeat.  But, I decided to write it out because I know I'm not the only one processing.

Last week I sat with my group of supermoms at the memorial of one of our super kids.  Sitting there I felt a mixture of emotions.  Certainly there was sadness for our friends, who lost their little one so unexpectedly.  But it wasn't lost on any of us in that row of support that it could have just as easily been us.  There was a strength in our row of supermoms in the back of that church.  We were there for that sweet family, but also there for each other too.

Now, before you click off this post for being too melancholy, please stick with me.  Hear me out. Because this is a part of life that needs to be talked about, and heard.  In this world of medically fragile children, we try to get on with making life as normal as possible.  We do school, and outings in the community, and even try to go on vacation.  But, it is always, ALWAYS there looming in the back of our minds that something could happen and our child's light could go out too soon. And we're always reminded most keenly when we lose one of them.

As I drove home from the memorial of this sweet little girl, I called my sister and told her what I was doing.  I told her if she needed a gauge of how you're dealing with the grief of losing your mother five months ago, just go to the funeral of an 8 year old.  She offered me her condolences and support, and I think I gave some pat answer like, "it's just part of this life we live.", and moved on to a happier topic.

But in truth, I was a bit of a wreck. Because it's not fair, this life we live. Because no mother should have to bury their child.  Because I should not have had to say good-bye to my mother so early in life. I was mad at death.  I was mad that people have to say good-bye.  I was sad to think that one day it could very well be me in the front row while my tribe of supermoms sit together in support of me.

Somewhere on that drive home, I took a wrong exit and ended up on the other end of town than I intended.  I ended up on the road right in front of the hospice my mom died.  And I thought, this was some sort of very cruel day.  My sadness was not getting a break.  I have avoided that road altogether since August, and here I was right in front of the hospice center.  And as I sat at a stop light feeling all the feels, I took a breath in and huge breath out.  This is life.  It begins, it ends.  We live on because of the love we've felt from those who have left us.  We try to do good by them.  We try to get on with living, because we have to.  And we're there for one another.

I guess in my roundabout rambling way, I'm trying to say that sometimes it's okay to feel it. I'm trying to put the sadness to words, instead of keeping it in. To acknowledge that life is hard for everyone, on so many levels.  This is something I've tried to remind myself daily since August. This is something I've tried to live by for the past 12 years.  Life is hard.  Life goes on, even through grief. And the burden of heavy sadness will lift a little bit at a time.  In the meantime, I strive daily to be kind to others, because you never know what they're going through. And give Max more cuddles. And remember my mom with happy memories.  And try to put one foot in front of the other and get on with living life.


“Give sorrow words; the grief that does not speak knits up the o-er wrought heart and bids it break.” 
― William ShakespeareMacbeth