Tuesday, May 4, 2010

This last week

We had the meeting, the very big, most important meeting. It was... Odd.

Let me first say that the one thing that you should not bring to the very big, most important meeting is food poisoning. It really makes it hard to concentrate and might even make the strange people in your home think you always sweat and take deep breaths at odd times.

Yeah, I have been waiting for this meeting for about 9 weeks. It has been drilled into our head by doctors, friends, support groups, etc, that this meeting is very important. It sets the tone for what our precious little baby will receive in terms of support for the first 3 years of life. You want to be on your A-game for this meeting. You want to bring it. Me, I brought food poisoning. It sucked.

Anyways, other than trying to act like I wasn't going to vomit in mere seconds, the meeting went OK. We had an odd group of characters on our couch all hovered around a sleeping baby and throwing questions at Mike and I left and right. The weirdest part? No one introduced themselves when they came in. It was like a party and everyone was invited, but not by us, the hosts. We had to guess why they were here. Once we got that all figured out, we realized we had a state case worker, a feeding therapist and a early intervention specialist all gathered around Ella. The case worker was representing the DDD (which, by the way, stands for Department of Developmental Disabilities....) and she asked us questions like "what do you want to accomplish for Ella"? They were very broad questions. I tried to bring it back to what we wanted to accomplish for her right now and think that by the end of the meeting we got the point across. What we want to accomplish is for Ella to be as much like her baby friends as possible. If that means she needs 7 therapists and a rhinestone tutu, then that is what I want them to deliver to me. She ended up stating that her plan would, for now, include a speech / feeding therapist, a physical therapist and a developmental specialist. We have an option to add occupational therapy at a later date. I also told them I wanted all these therapies once a week. I think the way this works is it now has to be approved by some higher authority, so we are waiting on approval from the DDD to get it all started. I am hoping that happens soon.

The next lady on our couch was with Rise Services and was there as a replacement for the woman we met with when Ella was 4 weeks old. I am still unclear as to what Rise does other than set up the meeting between us and the DDD. I have gone to them to ask questions about the services, etc and haven't really received a straight answer ever, so the purpose of Rise is a little unclear to me. The woman had a box of toys more appropriate for a 2 year old than a 11 week old and asked me questions that were pretty straight forward given the baby in question was about 2 feet from her. "Does Ella open her eyes?" umm, yeah. "Does Ella bring her hands to her mouth?" Yep. I don't really know what she did with this info other than tell me Ella scored on the 0-2 month range and that you can't score below that and for her age you can't score above it either so Ella scored as expected. She then seem to watch my every move as I was changing Ella's diaper. I don't know if she noticed I was turning green or if she is a spy sent into homes to make sure we are proper parents, but she was there and part of the pow wow and seemed nice enough, so we let her stay.

The final lady was the biggest mystery and honestly, I don't know who invited her. She was the feeding therapist. She brought a giant bag of nipples and a miniature stethoscope and proceeded to mess with Ella during her feeding to the point I thought Ella might actually pull this woman’s stethoscope right off her neck. Now, yes, she was annoying with her 12 bottle types and all, but she was probably the most helpful person at the meeting. She watched us feed Ella, listened to her suck and swallow and gave us pointers for feedings. I am more interested in a speech therapist than a feeding therapist, but I am told that they come as one package this early in our plan, so I will take her and her mini stethoscope and try to get her to focus on speech with us more.

In all, the meeting was surreal. I was sitting on my couch, the couch I purchased 3 weeks before getting pregnant, the couch I laid on for weeks on end when my body didn't want to be pregnant anymore, the couch I held Ella on and cried and cried in those first few days after she was born and now the couch where I listened to a group of people I had never met before talk about my daughter and her disability. Funny how it all works. I got that couch because it was comfy and big and wouldn't show wear. It has already done its job a million times over in just 11 short months....

So. That was the meeting. I was sick, Ella was charming, Mike was trying to take it all in and then as soon as they all arrived they left and Mike and I were left standing at the door staring at each other and wondering if it all really happened or if it was a dream. I then left Mike at the door and threw up. Note to self, never eat at El Zocalo's again, no matter how good the salsa is.

Since the meeting I have had the opportunity to talk with an amazing mom of a 2 year old with Down syndrome who is willing to share her therapists with us. I am working on getting them added to our plan with the DDD and hoping they can all start within the next few weeks. I am also trying to figure out about the costs of the sessions. The state budget crisis has left a big part of the cost of the therapies to be absorbed by the families and while Ella will one day qualify for government insurances that cover the costs, right now we are in waiting for them to just look at the application. I have been told that almost all Down syndrome babies are rejected the first few years of life. I believe they don‘t have to cover it until they are 3, so it will be a long fight, but hey, I am ready. We do have private insurance so I have to see what they will cover as well. I am sure it isn‘t much as we are self employed and our insurance isn‘t the best. Yet another maze to get through. I have a feeling that in the next few months I will become an expert at insurance and government programs. Yeah!!

That sums up our Tuesday of last week... Let's see, we also had a parent - teacher conference for Reed where I was told he has a pretend cheetah as a friend ( I suspected this, but didn't really dig into it as I was hoping his imaginary friend wouldn't be a jungle animal) I was also told he has a hard time focusing and would rather talk and be silly than learn. Yep, that sums up Reed. I hope by kindergarten he imagines a cage for the cheetah or we will have all kinds of problems. He is the type of kid that would literally get up and run around the room screaming his cheetah is chasing him and then just sit down a few minutes later like it never happened. His poor teachers….

Oh, we also got a boat, drove it home from Yuma, launched it, docked it in 40 MPH wind gusts and managed not to get divorced in the process. It was a very successful week...

My kids are pretty much ready for school to be over. They just want to play and hang out and to be honest, I am ready for a couple of months of not waking up at 5 AM and not trying to seem like I am a responsible parent who utilizes all 5 food groups when packing lunches.

This week... Well, it is just Tuesday and today I managed to get someone fired from their job (not intentionally), we were served with a small claims lawsuit at work (darn tenants) and my cheetah loving son managed to overflow the sink at the nail place with soap bubbles in about 15 seconds (yes, I did leave a bigger tip than normal to hopefully make up for the mess he created). If tomorrow is anything like today, I can't wait to wake up!
Have a good night my friends!

1 comment:

  1. Been there done that, My Daughter is going on 13 in July Madison is truly a work in progress but then again aren't we all. As Ella continues to have milestones slip by, you will be proud of the milestones she achieves, it Is true, as you can think back on the times your boys first waved "bye-bye" or blew you a kiss , those days are hard to remember , but with Ella each milestone she makes you will appreciate them more because you now realize just how hard it is to perform even the simplest of tasks for Ella , I promise you will enjoy it and you will know all the milestones they are like a haunting list but as you mark things off the list you smile, I find my self smiling more than crying, That is a good feeling. I enjoy your blog and would love to meet you and Ella!