hello-o-o-o-o-o!

Did ya miss me? I know. I've been a bad blogger. It's not that I haven't had anything to say, just no time to gather coherent thoughts!

Quick summary of recent events:

- Kira turned three! We had her birthday party on Saturday and it was lovely. We had it at home, so it was just family and close friends (of course, that's almost 40 people right there). I think she really enjoyed it. She loved everyone singing to her and said "hooray" and "piiiiittttttty" a million times while opening her gifts. It was pretty low key and I was thankful for the chance for our old and new friends to meet each other. Pics later, when I steal them from someone else. As usual, Derek and I were too busy running around to take pics.

- Kira started school! She's in one of the blended classes. 5 typically developing kids and Kira is the third child in the class on an IEP. She's the youngest, the only girl, and the only child with Ds. The first week was a little rough, but yesterday she walked in like she'd been doing this for years. I think it's going to be a good fit for her.

- Other good stuff: We've had lots of chilling with family good times recently. Thanksgiving was lovely with Derek's parents. We spent the majority of the weekend in Shreveport with my parents and had a wonderful time. More on that (with pics!) later.

I've been busy crafting, crafting, crafting and want to share one project with y'all. I made this tutu and drawstring bag for mailing it in over the weekend:

I've donated them to the Zoromski's auction so that they can get their daughter Lily home. Lily is in an orphanage overseas. She is five years old with Ds and it is a miracle that she hasn't been sent to an institution, yet. Lily is a twin, her birth parents kept her biological sibling. You may not now it, but Michelle and Brian are also the parents of twins. Ruby's identical twin sister, Lydia, died at birth. As Michelle put it, they are a family missing a twin and Lily is a twin missing a family. Amazing.

Head over to A Home for Lily to check out all the cool items in the auction. I know Michelle, Brian, Karly, Braden, Ruby, and especially, Lily, would appreciate it!

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And I promise to be a better blogger. At least, I will once I get laid off from Santa's Workshop.

ARD - advice needed

We're getting ready for our ARD* meeting on the 18th. I'm attending a sort of "getting ready for your first ARD" training session next week.

Our OT (last visit, so sad) told me that if Kira starts in the blended class, to request that we have an OT monitoring Kira's progress periodically. (Assuming that Kira isn't offered OT, initially.) Laurie said that whenever we have an ARD, to make sure that we have concrete reasons for requesting various therapies, rather than just saying that we want OT (or whatever). Specifically, she said that we should request that Kira be monitored for hand strength, hand skills (grasp patterns, bilateral skills), and self help skills (eating, dressing herself, etc).


Brenda left this comment on an earlier post: Be sure to keep notes and documentation on/about all the ARDS.......keep copies of everything, phone calls, etc. You never know when you might need that data. (Thank you, Brenda!)


Beth recommended visiting classes to see what we feel the best fit for Kira would be. (Thank you, Beth!)

I'd love any advice anyone else wants to share about being prepared for the ARD. I don't anticipate having problems. I just want to be ready!

Thanks, y'all!

*ARD Meeting (Admission, Review, and Dismissal) - Annual review of a student’s special education program that includes an update of the student’s progress, a review of the current Individualized Education Plan (IEP), and development of a new IEP for the upcoming year.

So, today went well

Kira's testing today went so well! I was so nervous. We've been told by her therapists that there was a chance that she might be doing so well that she might not qualify for services. A lovely problem, yes, but one that made us very nervous. Private therapies aren't an option with our budget, so if she didn't qualify, we would be winging the next two years.

So...the cut-off for services is scoring an 80 or above on whatever the test was. She scored a 77. And I was thrilled! She gets services AND is doing really well.

We're not sure if she'll start off in a blended class or in a PPCD (Preschool Programs for Children with Disabilities) class. I'll learn more at the ARD meeting.

The school is really cool. As I've mentioned before it is just Pre-K, PPCD, and blended classes. Each class has 10 students. The blended classes are 5 students on IEPs and 5 typically developing kids. They have a little computer lab, a library, a gym, and a teeny tiny lunchroom.

The speech path at the school worked for ECI for awhile. We saw her a couple of times when Kira was one. She came into the office today, while Kira and I were waiting for the testing to start, and said, "I don't know if you remember me, but I think about your daughter all the time! I remember how great her speech was so early and how verbal her brother was, too." It was awesome hearing that, and we are very excited to get to work with her again.

The testing itself took about an hour and a half. I was amazed that Kira hung in there for that long, but she was "on" the whole time. She really seemed to enjoy it.

I feel so much better now that we're on this side of the whole thing. I'm terrified of sending my tiny girl off to school, but I'm really excited for her new opportunity.

Thanks again y'all for holding my hand these past few days!

thanks y'all

I am so lucky to be a part of such a wonderful community of people. Thank you all so much for all of the supportive comments on my last couple of posts.

I'm getting on my own nerves with the worrying, so I'm shelving it until after the testing is done. If you're the praying type, though, could you send some our way for Kira's testing tomorrow? And if you're not, I'd love some positive energy from you.

Moving on.

Up for today: much laundry, Halloween costume construction, and some batch cooking. It's a gray day here in TX, so the kids and I are staying in. They are currently eating popcorn for breakfast. Hey, it's a whole grain.

I hope y'all have a lovely day and thank you, thank you, thank you for making a mama feel so very supported!

see here's the thing

Mothering itself is a hard gig. (and Fathering, too, I assume - but I can only speak from my perspective.) You're constantly faced with "am I doing the right thing?" And the guilt, oy the guilt.

I've said before that mothering a child with Down syndrome is Mothering to the 21st degree. And it really is.

Is-my-child-hitting-milestones becomes Is-my-child-hitting-milestones-with-5-different-people-keeping-track.

And while you hope that all of those professionals have your child's best interests at heart (and we've been lucky in that respect, I think) the reality is that this is their job. And some days they don't want to be there. And some days they are thinking about their own kids. And some days your child is the hour they are just trying to get through.

And I'm having a hard time with turning my girl over. I'm sad. With Jackson, Derek and I just decided for a variety of reasons that we wouldn't do a traditional preschool. With Kira, it's this BIG DECISION that comes with more testing, and more paperwork, and new people observing and commenting and grading.

So, I worry about Jackson's future. But with Kira it feels that all of these decisions when she's just an almost three year old little girl will have such huge import on her future.

And who the hell decided that I was qualified for all of this? I know that with our kids we should presume competence, but I'm having a hard time believing in my own competence.

I'm sure that I'll look back at this post next year and realize that I was worried for nothing. I'm having a hard time right now, though.

procrastinating

I'm supposed to be filling out the paperwork for Kira's PPCD testing right now. Obviously, I'm not doing it.

I went to pick it up yesterday, and I was really surprised at how emotional I felt when I left. I almost started crying right there in the parking lot.

The school is nice. Everyone I've met is very friendly and I've heard wonderful things, so it's not that.

When I got there, I was surprised to find Kira's ECI coordinator there, too. She just happened to be in the office where I needed to pick up the paperwork. And then it was about five minutes of signing this release for info, that release for info, and three thick stacks of paper for me to take home.

The PPCD coordinator (no idea what her title is) said, "Now, it's Down syndrome, right?" and when I said yes, "Oh, we LOVE Down syndrome. We have two with Down syndrome in the class right next door! She is coming here, right?" There are, I think, 10 different PPCD programs here - most are in the elementary schools, but one is just preschool for 3-4 year olds and kids on IEPs. They have classes with just typically developing kids, classes just for kids on IEPs, and blended classes. Kira will most likely be in a blended class.

I think what bothered me was that here we are at the start of the next chapter and to the powers that be Kira is a pile of paperwork and "Down syndrome". And while I have no doubt that they will love my daughter, it's not because she has Down syndrome. She's my smart, beautiful, funny daughter not a bunch of test results and check marks on a development chart.

Throw in my ambivalence about sending her to preschool five days a week at the age of three and I'm a mess.

A procrastinating mess. Ugh.