December 22, 2007 9:12 AM
My life - quick and random thoughts
Is anyone out there reading? Just wondering if you are as busy as I've been. A lot is going on with my kids and they come first. But I'm always thinking, "Oh, I'd like to blog about this.. . "
Last night Jonny had a party with a bunch of guys from school. I say that casually, but for a 15 year old with Down syndrome, this was a really big deal. A dozen guys came over and ate pizza and watched Pirates of the Caribbean and played games. They were really sweet not only with Jonny but with each other. Most were on the basketball team and are part of a new Buddy Club at school that matches up kids with disabilities with typical peers for social stuff. One thing I noticed was that when we served the pizza, many sat at the table with their hands folded waiting for grace to be said, though no one had said anything about it. So cool to live in a place where that is the norm.
Zach has been home from college for a week, but Ben just came home last night because he'd still been working in Lynchburg, waiting tables to earn money for next semester. Both of them are financially independent now. When they asked last year to live off campus, I initially thought it was not a good idea, but they explained their position logically and won me over. Renting a house has done wonders for their sense of independence and responsibility. It was a good move.
Last year when I set out to fix all the accumulated problems around my four younger boys' IEPs, I had to prioritize because I couldn't tackle all at once. Now, nine months later, three of my guys have very strong IEPs and great teachers. Jesse has received the correct diagnosis of Down syndrome/autism and is getting more help aimed at his special needs.
So now we turn to Daniel, who in fifth grade and with a very bright teachable spirit has been relegated to a self-contained classroom doing early elementary work and next to no academics. This is my current challenge.
When I asked for a behavioral specialist to come observe and tell us what Daniel needs to be in full inclusion, the teachers said he has not behavior problems at school. He originally did and that was why he was in a self-contained classroom.
So I've asked to have him put in full inclusion. They've told me that he needs a new IEP to do that as since he is in a self-contained classroom, he can't have more than 40% time in full inclusion. So I asked for a new IEP. Then they said that if I push for full inclusion, he will have to be bussed to his home school.
Daniel is in the middle of his fifth grade year in a school he's attended for four years, and will have to make a transition to middle school next year. His small amount of inclusion in the 5th grade class is very successful with a teacher and kids who love him. It would make perfect sense to just keep him there so he has the greatest possible chance of success in full inclusion.
But no.
The school personnel don't like a parent stepping out of line. And this is the teacher/vice principal that started my radicalization process last year when Daniel and Jesse were being sent to the nurse every day for every little bump on their chest or lump in their mouth (what were they doing invading their privacy anyway?). This teacher is the one who thwarted my efforts to get Jesse's dual diagnosis so we could start adding the autism piece to his educational puzzle. (this was overturned during the review process I petitioned for).
According to advocates I've talked to, the statement that they can't go above 40% for inclusion under the current IEP is not true. Nor is it legal for them to threaten to send Daniel to another school if I initiate a new IEP requesting the least restrictive environment.
Daniel has been home with me because I think that profits him more than his current preschool level situation and spending most of his time hanging out with other kids with disabilities. This is a kid with Down syndrome who at 8 could read 200 words and who under his current teacher has made next to no progress.
Wednesday I sent him to school to avoid the truancy laws - have to send him on the 10th day of absence - and when he came home I was so frustrated by the silliness of the construction paper cut-and-paste activities he brought home - no academic work - that I took pictures of the contents of his backpack and the contents of my other guys with Down syndrome to send to the school administration to show that he is just not being taught at all.
I have some meetings with advocates/consultants the first week of January to help me get a grip on what his IEP should look like. Am also going to try to schedule a thorough reading evaluation. On the 15th we will have a meeting to write a new IEP for Daniel - hopefully to get him fully included with proper supports - without having to resort to the mediation process.
The 15th is the same day we have the meeting at Waterford with advocacy professionals to brainstorm ideas for increasing school and community awareness about disabilities. Thanks to Justin breaking through the MR barrier at Waterford, there will be at least one other student with Down syndrome there next year.
So that's been keeping me busy.
Maddy and Ben will be singing at the Christmas Eve service at our evangelical church. Ben is doing a solo of "O, Holy Night." I have been going to that church as well as to Mass during the week. Unfortunately, when Maddy was at praise team rehearsal last week, the leader prayed that her mom would continue to hear from God "even though she is attending the Catholic church." I was grateful she told us and Tripp called to talk to him about it. But I am not going to be deterred from my course of loving my brothers and sisters in both worlds. I will not get upset though people misunderstand and misjudge me.
Ironically, the words that come to mind are Martin Luther's: "Here I stand. I can do no other."
Well, off to Costco to get more pizza. Oh, no, not again! But today Sophia is giving a surprise party for a friend at 11:30 and so the pizza flow continues. Think I'lll get a veggie tray and stick with that. . .
My weight is up 8 pounds so I am really counting calories. I never kept any bigger sizes and refuse to go there again. I have seen the enormous benefits of losing that weight in my increased productivity and effectiveness in advocating for my kids. I cannot afford to lose that edge :) Besides I like how I feel at size 10 rather than 22w.
Posted in Catholicism, Church Issues, Diet, Disabilities, Down syndrome, Inclusion, Loudoun County, My life, Public schools | Permalink
Comments
For what it's worth, the district I'm in has MANY Special Education students in full inclusion. I know of one young man who (in high school) has 6 regular education classes plus one hour of "home room" time with a special ed teacher.
Posted by: Ellen | December 22, 2007 12:06 PM
Barbara, I think you should tell Maddy to tell her praise team leader that "My mom says 'Thank-you for the prayers, they help me immensely! The prayers help me see that I am right where God wants me to be!'"
I think humor is one of God's biggest blessings! Merry Christmas!
Love, Julie C.M.
Posted by: Julie C.M. | December 22, 2007 3:02 PM
Yes, I am reading (even though it is busy!)
I have been praying for KS Milkmaid, also. (hoping someone would have an update)
Thanks for your blog!
Posted by: Alicia | December 22, 2007 3:26 PM
It's unfortunate that Maddy had that experience, of COURSE you are going to continue to hear God. It's a testament to your relationship with your daughter that she came to you and your husband.
Posted by: aine | December 22, 2007 3:30 PM
hello barbara, you will be in my prayers for this. as a mother of a severely mentally ill 8 yearold, i am continually fighting for my son's life in the educational realm with ieps. as i know you already know, YOU are your child's best advocate. be encouraged friend! you are doing KINGDOM work! may God bless bless you! julie harris
Posted by: julie harris | December 22, 2007 4:46 PM
Thanks for your courage and parenting excellence.
Here's an excerpt from a blog post I wrote in response to what you have written.
I thought my two were enough. Twelve children, this mom deserves more than a medal. I'm an admirer and we've never met. The excerpt below came from a recent post that you should take 2 minutes and read in its entirety.
Stop by when you have 2 minutes:
http://www.thinking-forward.com/2007/12/mom-of-12-speak.html
Posted by: joe bruzzese | December 22, 2007 11:40 PM
Dear Barbara,
I read your blog faithfully and it has added much to my life. I thank you for sharing so openly and honestly. Whenever I read about your struggles in advocating for your children's educational needs to be met, I get a little knot in my stomach and immediately pray that those responsible for meeting the needs of your children will be led to step out of their improperly placed limitations and consider the power they wield and the impact that it has on the lives of your children. I know that yours is a daunting task and filled with frustration. I've seen first hand the crazy-making decisions that are made when I was in a position to have to advocate for my clients within these dysfunctional systems. I have a sister who works as a developmental psychologist with the public school system and is responsible for testing and evaluation and recommendations/decisions for placements and services. Two of her children have special needs. Even though she knows the system and has an "in" so to speak, she still had great difficulty getting her children proper placement and services. I like to think that her personal experience has made her more sensitive to the struggles that parents she works with face. She is frequently extremely dissatisfied by the way the system works, or doesn't work more appropriately. It never ceases to amaze me to what lengths some people in a system will go to keep from doing the right thing. To what end?
I commend you for your tireless efforts on behalf of your children. I empathize with your frustration. Nobody knows your children or their needs better than you. Keep fighting the good fight. You're in my prayers.
Maggie
Posted by: Maggie | December 23, 2007 11:01 PM
I came across your site on a search for christian/personality types. I've been encouraged to see someone else has had an interest in it from a spiritual perspective. Thank you sincerely for writing about it.
From your entry, you've had some great learning experiences with church cultures, too, which is also encouraging and something I feel I can relate to.
I've really enjoyed your site, and am looking forward to visiting again. Thank you for sharing from your life, and sharing your experiences. They have been a comfort to me today:)
Posted by: Learning | December 26, 2007 1:01 PM
Hey Barbara, I cannot believe that Sophia is now 18! WOW. I remember when she was this little cutesy girl among all the boys. God is surely amazing!
Why not put some current photos of your slimming self on the web site??? I love your comparison under the tree but some new ones would be oh so nice.
You are loved out here in crazy Marin and greatly missed...
Posted by: Robin | January 4, 2008 12:20 AM
I am sorry to hear about your problems with getting your children that have special needs accommodated. I am in the field of education, and I know that the trick of actively finding reasons to send kids to the nurses office is the sign of a very inexperienced teacher. It sounds like the special education teachers are not communicating well with you...they may very well have solid reasons for not wanting full inclusion for your son, but if they are not backing up their point of view and showing you why they recommend only 40% inclusion, they are not doing their job. As teachers, we are advocates for our students (or should be)and what's "best for students" should come before any policies or rules that are in place. Exceptions can always be made to polices, especially when the exception is what's best for the student. I have to say I am surprised at the threat to send your child to another school...first because your child's state funding would go with him to the other school and second because it is my understanding that it is the law to include special ed (and ESL) students as much as possible...actually it is my understanding that not doing so is a violation of the law (but this can vary between states). Research shows that inclusion is best for kids, so good educators should follow current research.
I am not sure what state you are in, but in Minnesota, there are publications about special ed policies so there's no questions as to what should be going on(you've probably already read those for your state). Also, it may be useful to find a lawyer that would help you advocate for your children (maybe one that would take your case for free or sliding scale)...sometimes one call from a lawyer or news station can change attitudes very quickly!
It's been a while since you first posted this, I'd be interested to see if you are still having the same problems...maybe you've already posted an update, I am still "catching up" on this blog, there is a lot to read! I am really enjoying the topics, though.
Take care!
Posted by: Lianna | June 23, 2008 9:51 PM
