A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Saturday, March 30, 2013

IEP Victory!

If you haven't been following along my with my school sucks saga, you can catch up or just just read the last entry I posted in which I sum up a lot.

Here's where things stand today:
!Lo Hicimos! We did it! Here we are, in a place of victory (I think). Little Bird received an ASD certification through the local school district, and will transfer to an Autistic Impairment Program. The IEP was just 2 days ago and today is the last day of school before the spring break, so this is it. She'll begin the new program once we return from the break. Feels kinda quick despite the fact that I've been pushing for this since last September!

Once the Central Evaluation Team completed its testing including an ADOS exam, which the school district uses to determine Autism Spectrum Disorder is present in the student (another day another special education evaluation), I received my official invitation to the IEP meeting. It was overwhelming to see all the names of those who'd be in attendance: teacher, principal, SLP, OT, PT, adaptive PE, MSW, psych, teacher consultant. I knew all those people and their names, but then I noticed some names I didn't recognize, so I did a little research (read: googling). These other people who were invited to attend my daughter's IEP were the teacher, SLP, OT, and MSW that serve the ASD program. Woot! I mean, why would they be in attendance if the team wasn't recommending the change, right? So, I felt prettttty confident that was the direction in which we were heading. Then I got copies of all the reports and evaluations. Sure enough, they were certifying the girl ASD, even though they were clear that she presents differently in different situations and is very functional and incredibly engaged/verbal with me (but not with others, and certainly not yet in a school setting).

Going in to the meeting knowing that she was getting this certification and that the ASD class team were attending, I felt a lot more at ease. Plus, I had the help of the incredible advocate I'd hired. I am forever grateful. I walked into a room filled with about 20 people; all people I'm relying on to help me help my bird. Still, I feel like I'm up against them, too. The school administration is working hard to keep their costs low and often times, that means denying our kids the services they need, or the amount of time they get those services. I noticed that they were recommending that Little Bird get Occupational Therapy "20-30 minutes/2-4 weeks per month". Ummm, that's about 10 minutes per week!!!! She can barely hold a pencil! So, I had them increase that. Same thing happened with speech services. They were recommending 20-30 minutes/4-8 times per month. So, that works out to a minimum of 20 minutes a week. Well, you know what happens when you give a school district the minimum that they have to achieve- they shoot for the minimum! Now, I'm not certain that's how it is where you are, but that's certainly been my experience thus far in the public schools.

I knew my girl wasn't getting what she needed from the schools. So I fought for her. And I fought. And I fought. And I will keep on fighting for her, speaking up for her, and doing the things for her that she can't quite do for herself....yet.

Will the new class be right for her? Will she succeed and excel there? Will I feel like I'm going to vomit everyday when I go to pick her up from the new place? Find out next time on The Adventure of Little Bird!

**Side note: thank you to everyone who has supported me through this journey. I am forever grateful and indebted. It takes a village and I'm so glad that so many people out there are my village people!!


Friday, March 29, 2013

*This Moment*




{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Wednesday, March 27, 2013

Why I'm Going To Light It Up Blue on April 2

April 2nd marks World Autism Awareness Day and once again, we are planning to Light It Up Blue.
Just like in 2010, 2011, and 2012, I am asking YOU to join me by wearing BLUE on April 2nd and then send me a pic so I can add it to the gallery of supporters.

So, here's the thing... I know that many people associate the whole Light It Up BLUE campaign with Autism Speaks because they're the ones who founded that whole thing and promote it like crazy. I also know that many people who are parenting kids on the spectrum aren't totally thrilled with Autism Speaks. As well, many self-advocating autistics are very anti-Autism Speaks for a variety of reasons that I don't need to go into. You can google around if you are interested. Personally, I'm a bit uncomfortable with where their money goes, and their "research", as well as their public push to make Autism seem like a terrible sentence. Still, I am grateful for and admire their efforts to continuously raise awareness. And that's why we'll light it up blue: to raise awareness for the ever increasing numbers of families living with Autism.

But wait! There's more! There's more important work to be done. Awareness is just the first step. Let's get committed to working on Acceptance, too. So, when you wear BLUE on the 2nd, wear it to raise awareness and acceptance. Then send me your photos so I can post them here.  Email them to me at TheRealDaniG (at) gmail.com. Do it!!

Here's our pic from last year. Guess we need new shirts already...



Friday, March 22, 2013

*This Moment*



{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama


Sunday, March 17, 2013

I Made Food Out Of Pinterest Recipes

A nice, relaxing Sunday means the oven is on, the coffee is on, the record player is on, and it's still cold here, so the heat is on, too.

I pin stuff on the Pinterest that I think I'll enjoy making and/or eating. Then I make and/or eat said things. Today I got pretty busy doing a bit of that.

I started out baking brownies from scratch and I must say that after I baked these last week, I said I'd never bake brownies from a mix again and I am sticking to that. So easy! So, first I made some with gluten free flour and added a bit of xanthan gum. Then I made another batch with the real gluten-y flour.

Then I moved on to the Honey Cinnamon Roasted Garbanzo Beans I'd been wanting to try. They're pretty good, but I'm not sure Bird will like them as much as she likes plain, uncooked garbanzos. Seriously, the girls loves them. 
This recipe (and photo) comes from FitSugar and this is meant to be a sweet snack.
Side note: garbanzo beas or chick peas. Discuss.


Next I made delicious "Crispy Edamame". Mine didn't look even remotely close to the photo posted, but tasted just fine because parmesan cheese pretty much the best cheese. Ever.

Do you have any new, exciting, easy recipes to share? 
You can see what else I've made on my "Made it myself!" board or see what else I think I can handle making on my "I can do that!" board.

While I made this stuff, I listened to Tallest Man On Earth "There's No Leaving Now", Grateful Dead "Working Man's Dead", and Alabama Shakes "Boys and Girls". Good stuff.



Saturday, March 16, 2013

Another Day, Another Special Education Evaluation

Previously on the Little Bird School Sucks Saga...

If you haven't been following along for the past six months, here's the shortest version I can come up with. This is our first year in public school. Little Bird is in a mildly cognitively impaired classroom despite not having a C.I. label because it seemed like the least restrictive environment (LRE: that's legal special ed speak for the best fit). However, in September (6 months ago!!) I reached out to the special services administration, voicing my concerns that she was, in fact, in the wrong program and would benefit from an ASD program where the teachers and support staff understand the things that come along with a kid on the spectrum- sensory needs, behaviors, speech and communication issues, along with social interaction struggles. While Bird's teacher has been willing to learn A LOT about ASD, she's not an ASD teacher and doesn't have any previous experience teaching a kiddo on the spectrum. I was told they really thought she was in the right place. I trusted them and gave them a little time. By November, I was done giving time. I knew this wasn't right.

In December, I called for an IEP where I on the record discussed my concerns about her placement. There it was decided that she would be reevaluated and her placement would be reconsidered. Of course, we had to hold another meeting (hellooooo bureaucracy). In the meantime, Ben and I visited an ASD class in the district and I can see that she wouldn't fit in just right to that program. Still, she'd get the teachers/therapists/staff who just get it.

So, here we are in March. Freaking March!! She's been going through lots of evaluations. I have, too, actually. The team needs to meet with me to go through all these questionnaires and also be there with the girl for some of the observations, etc. So, we've been busy.

Little Bird has always been a tough kid to put a checkmark next to- hard to categorize. There are so many screening tools that the school district uses. As I went through the Childhood Autism Rating Scale (CARS), I found myself answering the questions with, "well, sometimes. I mean, she sort of does that. I've seen her do that, but not consistently," etc. That test uses 15 questions to rate skills based on parental observation from 1 to 4 (1 being normal and 4 being severely abnormal). I also did the Autism Diagnostic Interview - Revised (ADI-R) with a social worker. Ditto. I was answering things with such confusion. In some lights Bird looks really low, but in others, she almost doesn't seem to fit the bill for Autism. That's the thing with this disorder- it's such a spectrum that it's possible to be both clearly on the spectrum and to also do things that are very typical. That's why it's such a spectrum and diagnosis is actually pretty objective at times.

This week, we did the big one. The Autism Diagnostic Observation Schedule (ADOS) is the gold standard observational test for screening and diagnosing Autism. It was developed by Catherine Lord who ran the University of Michigan's Autism and Communication Disorders Clinic. That's where Little Bird was originally diagnosed with Autistic Disorder when she was 3 1/2. When you get the diagnosis from the person who invented the ADOS, you can't dispute it. But here we are almost 5 years late and this girl is NOT the same kid. She looked so different this time around. She was so engaged and interactive. She walked right up to the pile of toys, grabbed the baby doll and started in with, "It's a baby! Awww, baby, why you so sad? You want your mommy?" And there I was- jaw on the floor- wondering who is this kid with the pretend play skills?! I mean, I've been seeing some of this emerging at home for some time now, but not like this. She was actually really great. The psychologist, SLP, and MSW were all pretty surprised to hear her talk so much because they'd all observed her in her classroom and just figured she was largely nonverbal since she doesn't freaking talk at school.

When it was all said and done, I told her, "hey, we're done early enough so you can go to school today!" Her response?? "No school! No school today! I want to be sick!" My heart sank. I mean, I love her problem solving skills and how quickly she reasoned out how to get out of going to school, but still... I looked up to shocked faces. I told them she doesn't like it there. So sad.

So, while she was a completely different kid in a completely different setting, these school professionals from the evaluation team were able to see that in the right environment, Bird has a ton of potential, looks a lot more functional, is very verbal, and very interactive. Not at all what she's like in her current placement. You know, exactly what I've been saying for the past six months!!!

When will they start listening to the parents??!!

Next steps: more evaluations. Then the big meeting where the results of these evals will be revealed. And then I will sit back and listen to them suggest proper placement. I hope it's something more reasonable and better suited for her needs and, just as importantly, for her strengths. If not, I'm already looking at housing in another district!


Friday, March 15, 2013

*This Moment*



{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama



Sunday, March 10, 2013

National Women & Girls HIV/AIDS Awareness Day

Today is National Women and Girls HIV/AIDS Awareness Day. There are more than 280,000 women living with HIV in the US today. Most people in my life know I'm passionate about HIV/AIDS education, prevention, and finding treatments for those affected. I have friends who live and have lived with the virus. For the past couple years, I've been Rockin' the Red Pump to raise awareness and I'm doing it again this year.
There are many reasons why it’s important for women to know the facts when it comes to HIV. Biologically, we’re more susceptible to infection during sex. We’re also more likely to get infected through heterosexual sex.
Statistics used are from the Center for Disease Control’s website. Although these stats are only taking the United States into account, globally, HIV/AIDS is no less of a problem, especially for women.

The Red Pump Project


Key Snapshot of the U.S. Epidemic Today:
  • Number of new HIV infections, 2006: 56,300
  • Number of people living with HIV/AIDS: 1.1 million, including more than 468,000 with AIDS
  • Number of AIDS deaths since beginning of epidemic: 583,298, including 14,561 in 2007
  • Percent of people infected with HIV who don’t know it: 21%

HIV/AIDS AND WOMEN IN THE UNITED STATES

  • There are approximately 1.1 million people living with HIV/AIDS in the U.S. & almost 280,000 are women
  • In 2006, there were 15,000 new HIV infections and 9,801 AIDS cases diagnosed among women
  • There were 3,784 deaths among women with AIDS in 2006
  • Among those who are HIV positive, 35% of women were tested for HIV late in their illness (diagnosed with AIDS within one year of testing positive)
  • HIV/AIDS is the 5th leading cause of death in women in the United States, ages 25-44
  • High-risk heterosexual contact is the source of 80% of these newly diagnosed infections in women
  • According to a CDC study of more than 19,500 patients with HIV in 10 US cities, women were slightly less likely than men to receive prescriptions for the most effective treatments for HIV infection
  • Women with AIDS made up an increasing part of the epidemic. In 1992, women accounted for an estimated 14% of adults and adolescents living with AIDS in the 50 states and the District of Columbia. By the end of 2005, this proportion had grown to 23%
  • From the beginning of the epidemic through 2005, almost 86,000 women have died of AIDS and AIDS-related complications
  • The largest number of HIV/AIDS diagnoses during recent years was for women aged 15–39
  • New York has the highest number of women living with AIDS – 22,532
  • Seven of the 10 states with the highest case rates among women are in the South
  • The rate of women in D.C. infected with HIV/AIDS is nearly 12 times the national average

Knowledge is power. Find an HIV testing site near you


Friday, March 8, 2013

*This Moment*



{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama


Friday, March 1, 2013

*This Moment*



{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama




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