Sweet William

I think I forgot to mention sweet Will in my last blog post.  He has always been such a sweet baby boy.  He was my best nurser, and he can pull his chin down into the sweetest double chin.  And though he is indeed very capable of getting our attention, he will often coo and coo first, giving us a chance to get to him (sometimes) before he gets upset.

The thing that drove me to the blog tonight, though, was his sweet singing.  Yes, he sings.  We noticed him hitting notes as his daddy sang to him last night while the big boys were bathing.  He did it again tonight, first for Galen, and then for me when I took him.  He cooed and cooed while we sang, and when he got too sleepy to continue, he seemed to just rest and listen as I continued on, fidgeting when I stopped - no momma, keep going.

What a sweet baby.  I am so glad he is #3!

My Cute Toddlers

My Cute Toddlers

I need to record a few things Jack and Rowan are doing right now, to remember forever.  Rowan, in particular, has come out with some really cute stuff lately.


"monkey bar"  There was so much to love about the park this summer.  The slides, the swings, the water.  But above and beyond all, for Jack, was the monkey bars.  This kid, whose core is supposed to be on the weak side due to his disability, will grab on to a monkey bar and hang like a champ, with much joy.  So it's not much surprise that this is one of our first phrases, but we were tickled when Rowan popped out with "monkey bar!"in the bathtub, clearly labeling our soap shelf as his brother's favorite playground toy.

"gonga gonga gonga gay" I think this is an adaption from "Down by the bay", as he also says something like "domba domba domba day", and "down by bay, down by bay, down by bay, down by bay".

"mee mo mee mo mee mo"  No.  I got nothing on this one.  It's just cute.

"bundi" the name for his bunny

"Ah-(sigh)"  "What does Rosie say?"  

"awe-some-ah" What he was saying as he flipped through his Child's Story Bible in this picture:

 

And some dancing.  My boys can dance.  As Galen put it, Rowan has his own groove.  He will dance at music he likes, or sometimes just when he feels excited.   And it is truly his own moves, usually stepping in a tight circle with a little bounce to the steps.  Something like this:

And here is one with both boys dancing.

 

And this is a keeper too.  Here is a much earlier video of Rowan playing in a patch of light, and then Jack helps break into "Ho Ho Ho Ho-sana". 

Just the Way I Am

From time to time I think about how to answer my children, and my friends' children, when they ask why Jack is different.  I don't know exactly how to answer that question yet, though Galen and I talk about it and hopefully by the time they ask, we will feel more confident in our answers, and how to communicate our answers in a way that conveys the respect and love and acceptance we want him always, always, always to have.  (Related to that, our pastor has recently been asking us to help the church think through what is the best way to teach Jack and communicate the gospel to him in Sunday School.  We will need to work through all these things as best we can.)

In the providence of God, when Galen and I first started dating, we decided to join the same Sunday School class at Christ Pres in Nashville.  Leading the class was Dr. Anderson Spickard, who has a son, William, with Trisomy 21.  We had a chance to visit Nashville the Christmas after Jack was born.  While we were there, Anderson's wife, Margaret, gave us a copy of Just the Way I Am, by Krista Horning.  This is a simple children's book, but it conveys bedrock truths that I want influencing my childrens' thoughts concerning Jack, as well as his own thoughts of himself, as they grow up.

But I really love John Piper's review of this simple book as it appears in the Amazon listing:

"For the people in this book, the sovereignty and goodness of God have become a sanctuary for the soul in a life they did not expect to live. When they affirm the goodness and wisdom of God in creating them for short-term disability and eternal super-ability, they do not do so without tears. There is no glib trifling with pain. They are learning the paradox of "sorrowful yet always rejoicing." They are learning how to be brought low and how to abound. They believe that in this fallen age, God's loved ones groan along with the whole creation, waiting for the fullness of adoption, the redemption of their bodies. They find more hope in God's unsearchable wisdom and power and purpose than in the vagaries of natural processes or the assaults of Satan. They believe that God did not spare his own Son but gave him up for their complete renewal-spiritually and physically. This healing is as sure as Jesus is precious-infinitely precious. It is only a matter of time, a vapor's breath, and they will be whole. Because of the grace of God, these lives and this book exist for the glory of God."John Piper.

My stars!  Who doesn't need to hear this?

Sweet Jack, God is using you.  There is so much here that a broken world needs to hear, that perhaps your life gives people reason to pause and think about.  Praise God!

Jack's Permission to Test

We held Jack's first meeting with Boston Public Schools today, to sign for permission to test.  It was a tough meeting.  The lady I met with was older and nice enough, but tough-minded.  It felt as if she was used to the drill of the meeting, presenting all the required items on her checklist and comfortable with telling parents what they could/could not expect from BPS.  

She gave me time to ask any questions I had, and I am so glad I had done me homework and knew what to ask.  Namely, I am glad I knew to ask for a copy of the eval reports two days before the meeting.  That was not something that was brought up by them. 

Also, when I told her that my ideal situation (for my 3-year-old) would be mornings only, with attendance 3-days per week, she gave me the impression that this could not be done.  I didn't appreciate that, because I know otherwise.  I told her that I know families that have this arrangement, and other professionals have mentioned this possibility.  But she gave me reasons why that arrangement would not be a good idea; namely, that Jack would not be receiving the full benefit of school, it is disruptive to the class, and teachers are trying to achieve certain objectives that would not be achieved if he didn't attend full day. 

He will be 3.  I have no problem keeping him home a couple of days per week, and mornings only.  I also know from experience that after lunch, productivity declines even in school-aged kids.

Anyway, here are the rest of the notes:

He is having the following evaluated:  ST, PT, OT, psych.  The respective professionals will conduct each of the evaluations. 

I will have to talk to the school principal if I want him to attend less than 5 full school days per week.  I can't get a list of schools from her that offer an inclusive environment, although we may be west zone?  She wasn't sure.  Anyway it might be a good place to start looking.

If I want to visit a school, I need to call a principal.  She discouraged school visits (what??!! Ugh.  That attitude really surprised me.) because "sometimes parents get really excited about a certain school, but there are no spots left".  I am not bothered by that.  We have another shot for placement in the fall anyway.  

BTW - if I want another school or placement for the fall of 2015, I will need to send a request letter to the SPED department.  ("to the assignment unit"?)

We have 45 school days from today until the IEP meeting will be held.  This means it will be some time in January. (Looks like by Jan 16, 2015)

I brought up the PT thing, and she said - and I knew this - that PT services would only be available to those that need them to access the curriculum. 

So, all to say it was good in the sense that we established permission to test, and the timeline has started.  It is good for me to be on "the other side of the table", if you will, and to experience how that feels.  It was an OK meeting, mixed with some disappointment for me, and it was an emotional experience.  I don't want to fight, but I sense that we will have to fight - or at least push and expect to meet opposition - for Jack in the future, for him to have accomodations that we feel are in his best interest. 

And at the end of the day, God is in control, and He is good.  What we want is God's plan for Jack, and that might not look exactly like what we want and hope for now. 

Pictures of Jack and Rowan late 2013- early 2014

Here are some recent pics of Jack and Rowan.  Not in order, but all around the last 6 months.

Oh I love those boys!

Spring Getaway in Woodstock, VT

Mom came up to Boston about a month ago to watch the boys while Galen and I went to a ski resort in Vermont.  We didn't ski, but we had a chance to rest (as in sleeping in!) and I got to go to the spa.  It was wonderful.  I had a "Peppermint leg and foot massage" and a manicure.  I think the leg/foot treatment was one of my favorite spa treats, ever. 

It turns out that Simon Pearce has a glass-blowing studio not far from where we stayed, with a restaurant overlooking a beautiful waterfall.  I love his glass; I just wish it was a little less expensive!  The water glasses are thick with clean lines, absolutely beautiful. 

We spoke to one of the glassblowers as he worked on what I think was a goblet.  Afterwards we took a look at the old generator below the furnaces.

Finally, breakfast was included in our weekend package.  Belgium waffles, maple pecan pancakes, bacon, fruit parfait - yum!  I thought their simple green moss arrangement on the tables was so fresh.  I loved the simplicity.