Tuesday, October 29, 2013

The Aaaays to the Queues, Part I

Thank you all for indulging me with so many fabulous questions last week in response to my plea to populate a series of Q&A posts!  I was worried I'd be the laughing stock of the blogosphere if I hadn't received any, but I always had an out if I wanted to say I'd received all of my questions via private Facebook message.  Who'd be any the wiser, right?  But I didn't have to resort to such a clever yet brutally pathetic deception.

Because I often tend to get long-winded when talking about myself, I'll say that this is just Part I, to keep your eyes from glazing over, and that there will be at least one more Part in the series of A's to your Q's. 

Q)  What do you want teachers to know when your child is in their class? How can teachers help your child in inclusion? What is the most frustrating things about school? What do teachers not do that you wish they did?
A) Oh, these are excellent questions! I may have to skip the 4th question because her teachers read my blog, but to be honest, I can't think of anything at this point that they did not do that I wished they did. This is actually a pretty hard series of questions in general - we've been really fortunate that we've not yet seen the *other* side of education, the one where we need to fight for inclusion or one where the teachers weren't invested in my child's education. We've always had an aide in the class that helps Samantha stay focused and helps to modify some of the instructions. We don't want the GenEd teachers to have to modify what they do for a class of 21 to suit just one child - it's not fair to them. We want to make sure that the supports are in place within the classroom environment to help Samantha keep up, etc. 
We had an IEP meeting yesterday to add in some accomodations and modifications, things they already had in place, but that we wanted in writing just in case.  They included having Samantha stay in class for the introductory portion of the more conceptual lessons (Civics, History), then leave as part of a small group to have the lesson broken down into more basic, comprehendable pieces by the Resource Teacher.  I really don't give a rat's ass if Samantha learns what the longest river in Europe is, but I do want her to know how to look at a map or globe and to understand where we live in relation to other places.  She can memorize stuff, but I'd rather she understand more basic concepts that will help her in the future.  This is what they've been doing, and this is what's been working.  I don't mind these short, periodic pull-outs, as long as she's learning.  We were validated a few weeks ago when we were told by Sammi's GenEd teacher, the Resource Teacher, the Assistant Principal and two people from the county that had observed Sammi in the classroom setting, that she is definitely in the right placement, that she belongs in the GenEd second grade setting.  I know that can often be the biggest fear for parents - that someone will come and tell them that things just aren't working out, that they need to re-evaluate their child's placement in school.  I certainly feel for those parents.  We hold our own breaths often enough.
The most frustrating thing about school?  I just wish that we could observe Sammi in her classroom environment more.  Last year we dropped off and picked up Samantha from her classroom.  This year we have to say goodbye at the front door of the school in the morning, and wait for her to be brought out with her class in the afternoon.  I totally understand security measures that need to be in place, and the fact that there's far less chaos when the parents aren't buzzing around in the mix of things, but we really relied on that extra few moments of communication and connection with her teacher and her aide last year, and now we get so much less feedback on a daily basis.  Sure, we get a behavior chart with notes on it each day, but there's really nothing like 1:1 interactions.  It felt good to have the Parent Teacher meeting yesterday to quell the insecurities we often feel about the teacher we just don't know much, if anything, about, in a classroom we've only ever seen, perhaps, once.  Once again we were able to feel that comfort that had been missing, much like the daily visits we'd lost.

Q.  What is your favorite brand of leggings? Brand of clothes that fits her best? Love your taste in clothes and the fit has been a struggle lately...

A.  Definitely Naartjie!  Their pants and leggings all have stretchy waistbands, and they go up to a size 12.  They pay great attention to detail, and leggings are so much more interesting that regular leggings you'd find anywhere else.  I also find great striped leggings at Old Navy, usually on sale.  For clothes that fit her best, in general, also Naartjie.  They do styles that are less clingy and more flattering than other brands,   Check out their website - they're almost always having a big sale, and every Tuesday they select 3 or 4 items out of their newest collection to run at 40% off for the day.

Q.  Did Sammi's diagnosis factor into your choice to only have one child?

A.  Nope.  We had always talked about having only one child from the get-go.  Plus, I was 37, and knew that even if we did want another child, I couldn't even fathom having another any time in the next several years, at which time I would be too old.

Q.  What programs/apps/etc. did you use to help Sammi to start to read? And keep reading?

A.  Before Sammi was even 2, we were using alphabet and number flash cards with Sesame Street characters on them and baby sign language cards with photos on one side and the words on the other.  She was totally obsessed with those cards, and we never left home without them.  At 24 months she knew her alphabet, and she shocked me before she was 3 by looking at the back sides of the baby sign cards, where only the word resided, and telling me what each card was.  To this day I'm still not sure whether it was just pure memorization of the color of the card, or if she was actually able to read them through long-term memory recognition/recall.  At 4, we were invited to join a test pilot of Terry Brown's online version of her highly successful So Happy To Learn program, in which she has taught people with Down syndrome to read, at her home, for many years.  It could not have gone better, and Samantha, empowered, took off from there. 

Q.  Couples who have a child with special needs have a statistically higher incident of divorce. How has Ds changed/improved your marriage? Has it had a negative effect in your marriage at any point and, if so, how did you get through it?

A.  The key word here is special needs.  The statistics of divorce among parents of children with Down syndrome are actually lower than in the general standard statistics of divorce.  I suspect this may have something to do with how manageable Down syndrome is, how much information and support there is out there that helps parents to work together to successfully raise their children with Down syndrome.  We have been so happy to have been able to agree on everything when it comes to raising her, educating her, providing for her and advocating for her.  Our marriage has definitely been stronger as a result, and Down syndrome, or the fact that Samantha has Down syndrome, has never played a negative role.

More soon!  Feedback and commentary are always appreciated.  :-)



Linda Atwell said...

I figured you'd get lots of questions and these questions (and answers) are great. Thanks so much for opening up your private world and answering them all. I can't wait to read installment #2! http://outoneear.com

Stephanie said...

This was a great idea and I've been looking forward to reading the Qs and As.

Jenny said...

I was wondering when you were going to answer all those questions!! I loved this...Such great questions and I loved reading your answers :)

Carolynn said...

Thanks for the answers about Sammi and reading! Great ideas for moms like me of babies with DS :)