Friday, November 30, 2007

Crusade No. 14 - Who/what is your muse?

This month's (I'm barely making it) Green Pepper Press Street Team's topic is Imaginary Friends. Basically who/what is your muse? What inspires your artwork?

Well, since I don't consider myself a true artist I really haven't given this topic much thought until now. I had some trouble with this one and then one day it just dawned on me.

Stress--- stress---and more stress.

Maybe it's not a typical muse but I've created most of my published cards/projects under stress. When I am worried about someone/something I can throw myself into my paper, ink, stamps, etc and forget all about it for a brief time. Therapy for Momma. :) Pretty simple really. Maybe it should be called an escape instead of a muse but it works for me.

I'll leave you with a little creation for my ABA therapist. She does totally ROCK. Stamps are Green Pepper Press. Sweet stamps, huh?

Wednesday, November 21, 2007

Let's talk about the system

It stinks.

Okay----here's how it goes. You get referred for a complete developmental evaluation. You wait 4-6 months for your official appointment to diagnosis your child (sometimes longer---I've heard up to a year in Philadelphia). Birth-3 comes earlier but these kids need intensive therapy. It's not near enough.

You wait longer to get wraparound services. You have to have all these meetings, pick an agency, etc.

So basically you wait over 6 months to get intensive therapy started. So if we hadn't met a gal who knows Lovaas ABA we'd still be in a state of complete panic.

I've said it before. We got lucky. We have made huge strides and it's because of ABA.

So what is wrong with this picture. The typical family has just wasted 6 months of CRUCIAL development time. Time to remap the brain and get on that upswing.

This is the time you hear parents talk about---the time they see their kids "slipping away."

Sad, huh? No not sad------------------horrific.

Saturday, November 17, 2007

President veto

You can check it out here.-----I guess some still don't view this as a crisis.

Friday, November 16, 2007

It's official

We are offically on the spectrum---PDD-NOS to be exact.

Pervasive Developmental Disorder- Not Otherwise specified----translated into "we know there's something up with your kid but we don't know what exactly so we'll put her in this catch-all category." The good part is we do have the label so we will possibly qualify for more services.

I really don't feel like sharing my emotions today. There are some days I'm just overwhelmed and don't feel like explaining everything. Today is one of those days.

The psychologist will recommend 15 hours of wraparound therapy done in our house (in addition to the 4 therapists we have already). The psychologist seems to think we will be denied and will have to appeal to get the therapy. Joy. Isn't that sweet? I guess in Washington county they don't like to approve services for kids under 3 years old. By 3 years old it's so much more difficult to "catch up." So unfair.

We make strides every day but until you've had a child with these challenges you'll truly never know what it feels like to be part of that 1 in 150--to watch your kid struggle with things that come so easy for other children.

She is just such a smart and sweet kid.

She doesn't deserve this and it sucks.

Tuesday, November 13, 2007

Tomorrow----it ain't no big thang really................

Tomorrow is our official evaluation with the Child Development Unit of Children's Hospital in Pittsburgh. I look back at all the emotions surrounding this appointment and I'm finally in the correct state of mind. I've been all over the place emotionally with the appointment----everywhere from panic to dread to apprehension, etc. When we were first referred I couldn't wait for tomorrow to arrive. Then we met someone who has forever changed our lives. An amazing person who truly cares about kids and will go above and beyond. She literally trained me to be an ABA therapist to my daughter. WE GOT LUCKY. We were in a very dangerous place. You know that place you hear about on talk shows---"she was slipping away right before our very eyes"-----you watch any talk show about autism or any developmental disorder and you'll hear those words and dear God do I feel for those people. It was quickly happening here. I know Taylor's mind was making misconnections daily. I'm absolutely positive that was happening. We caught it in time and we are remapping as we speak and folks guess what?!!!! It's working. It's working. I know there are some people who think if we wait and see she will just come along in her own time. WEll, this momma can tell you that would've never happened and that's one risk in life Mark and I are NOT willing to take. Mothers ALWAYS know. ALWAYS. Her behavior was alarming and made me uncomfortable inside. If any mothers out there are experiencing the same feelings then you push your pediatrician to refer you on-----you PUSH like you've never pushed before. Your child is counting on you to do so.

I think back to filling out all those daunting blue forms we were sent when we first made THE appointment. I think about all those questions I answered. I am taking a different kid tomorrow. We have plenty to work on and many obstacles but they are being checked off one by one. I remember Early Intervention coming and asking me how I wanted our family social goal to be written----I simply replied, "I just wanna go out to a restaurant or store without a huge screaming struggle. I just want to be a family." That's it. Simple, right? Well it took a lot of work. We have been successfully out to eat twice in 2 weeks and to Walmart twice in 3 days. We have conquered the grocery cart----along with the sliding board and swings and trampoline. HUGE sensory progress folks. We will continue to work on playdoh, elevators, hair dryers, strangers, vacuum cleaners, loud environments, etc.

ABA therapy (done correctly) has changed our lives. Seriously. It is working for Taylor. It may not work for all kids but it is working here. She is feeling success. That is what it's all about -- her success which has quadrupled her confidence. She is so much happier now. Less frustrated with daily life---still frustrated with trying new things but we can work through it. She is so proud of herself when she makes progress. She knows. We still have a few bad days here and there but we won't focus on those right now. She's only 2 years old.

Soooo---this family still struggles and does tremendous amounts of therapy but we also trick-or-treat, go to the grocery store, do puzzles, read, jump on the trampoline, write, play chase, eat popsicles, watch Mickey Mouse Clubhouse, do more puzzles, hop, eat in restaurants, and many more typical family things.

So ya see tomorrow won't be a day to remember-----August 21, 2007------now that's the day to remember. That's the day we began ABA therapy and the day my child turned a very important corner----the corner of SUCCESS.