scattered.

The EIBI workshop is scheduled for Sept. 13th. If you need more info than that, let me know. EIBI stands for Early Intensive Behavioral Intervention and is a form of ABA and of course is a form of the behavioral therapy that was first integrated by Dr. Lovaas back in the 70s and 80s and so forth. You can learn a little bit more about EIBI here on the Association for Science in Autism Treatment website.

We met with Maddy's psychologist, Dr. MAL (using initials) on Thursday. The visit went really well. She will be leading the workshop in September, of course, and we feel comfortable with her expertise as we travel down this road of therapy and hopeful recovery.

(sidenote. let me apologize if this is the most choppy and weird post that I ever write. My brain isn't in "writing form" so I'm grasping just trying to make some congruency in writing this entry. Normally I would just put it off but I need to get the info out there)

Dr. MAL took down the names of all of Maddy's current therapists and will be calling them to establish some congruency to her therapy sessions. The problem that I was seeing was mostly in Speech and the PEC system. Remember when I mentioned PECS in the last post (PECS actually stands for Picture Exchange Communication System)? Well...from early on I could tell that Maddy was having some trouble wrapping her mind around this. Basically in the early stages that we are in of Speech, PECS was introduced with a "more" card. ST wrote "more" on a card and then had Maddy hand her the card when she wanted more of something. The problem that I was seeing was that Maddy already knows the sign for "more" and she is beginning to say it as well. The card was meaningless to her because she doesn't read and she really didn't have any clue of whether she should be signing "more" (like I require her to do at home) or giving this card to ST for more. Many times she tried to both but you can imagine that would be frustrating. Think of your everyday conversation and then imagine that you would have to hand someone a card or picture for everything you wanted to have or to express EVEN THOUGH you could sign or speak it. Annoying, right? And in a sense eliminated the need to speak if you can just hand someone a picture for it.

Now, do not think, for those of you who are in the "know" of everything I am talking about, that I am bashing PECS because I'm not. I think it would be/is highly useful for people who cannot speak or are not showing any signs of any kind of verbal or sign communication. In those situations, I can only imagine how VALUABLE this PECS system is. I bet it truly is amazing.

However, Maddy is showing signs of speaking...she has roughly 30 words at this point (mirror that to the mere 10 she had in April when we started Early Intervention) and a dozen more signs that she doesn't speak at this point. And she babbles. Plus she is beginning to use up to a 3 word combination. Such as "here you go". She added "welcome" this week after she hears "thank you" or says thank you.  And so obviously we are at the threshold of some really awesome speech...let's not confuse that with pictures. Of course we will still use them as like a visual aid...such as a schedule of what we're doing today but not as a basis for her communication TO us.

Okay. Enough of that. And for all of you who are going...what? I know. A month ago I would have been SO confused too. Thankfully I have this college degree in broadcasting which taught me how to think like an expert at something in a short amount of time...not that I am...but it comes in handy. Who would have thought being a reporter would pay off after I've been out of that industry for 4 years now?

Either way, I think any parent with a special needs child would understand that sometimes while all of your help has the best intentions....it's like being pulled in a million different directions at the same time. Everyone, including the general public and medical professionals alike, has an opinion on how you should be helping your child. Heck, most PARENTS in general know that. The unsolicited advice can be deafening. But so can the silence...so while I don't always appreciate everyone's opinions...I don't hate it either. Because the double edged sword of this is that sometimes when people say NOTHING to you about your child, it hurts more. It makes your child and your current situation, invisible.

Wow...I wasn't even meaning to talk about that today.... Anyway, I am a mess...of sorts. All I want is for Maddy to be "fine" - whatever that is. Sometimes I want to just wake up and she's smiling and talking to me and shows no autism aspects. I know that's SO unreal but I think it would be weird if I didn't wish for that. I know there is NO miracle cure for autism and I know we have a long road ahead of us. I know these things but my human brain still wishes that it wasn't true. I'm sure anyone with kids who have illnesses like cancer or diabetes or heart problems or tourrettes or Downs or any of them ALL wish their kids would wake up one day and be "fine". Like, oh, it was a mistake and your child is fine. Normal functioning child with no medical issues.

They say having your child diagnoses (preliminary or not) with Autism requires a grieving process. Just like any kind of loss, there requires a grieving process. I don't know what stage I'm at. I'm not in denial but maybe it's some kind of hopeful/realistic denial...like yes, i know it's true but I wish it wasn't. I'm still gonna fight really hard for it not to be true someday eventhough it is now. If that makes any sense.

Alright, just to wrap up this very scattered and jumbled entry. For those of you looking to HELP us. There is the workshop on Monday the 13th of Sept. If you have no desire to take part in the workshop, I will need childcare for my kids and those other mothers who will be attending sans kids. My friend Laurel is organizing a signup for bringing us meals twice a week...you can contact her about that - if you don't know her or what not, email me: jbkatt@yahoo.com and I can get you connected. Other needs include child care for Maelle and Eva - roughly 2 hours a day 5 days a week - you can sign up for one day of that week and Maddy's therapy will be at the church so you can even watch them there if you don't want to/can't bring them to your house or you can come to my house. And general housework. Such as helping me by washing/vacuuming my floors once a week or folding laundry or dusting or helping me organize this clutter. It's not always the huge things...sometimes it's the little things adding up that make everything very overwhelming for all of us. Like taking 30 minutes to come over and unload/load my dishwasher. Or changing our bedding. Seriously.

And if you want to know, in all honesty, it is VERY hard and VERY humbling to have to ask for these things. As mothers, we like to think we can do EVERYTHING and when we can't then we have failed in some ways. It's true. But my daughter's life is at stake and not my pride nor what I think other people think of me. Honestly, I just don't have time to mop my kitchen floor. Someday I will again. But not now. So for those who want to help...that is how you can help me. And prayer. Pray. If you can't do anything on my little list, pray. For Maddy. For me. For Justin. For Eva. For Maelle...just pray.