A Beautiful Day in the Neighborhood... NOT!

Today a couple of the older children in the neighborhood came over and invited Alivia to play with them. Allegedly one or more of the children noticed that she had to go to the bathroom while they were playing and "encouraged" her to pull down her pants and go in the backyard. When Alivia told me about this and one of the children confirmed it, I was seriously upset and decided to go talk to the parents of the other kids. I approached them calmly, but immediately got placed on the defensive by the parents saying it was my fault because I allowed her to play with the older kids without me being there to supervise. One of the moms even said she had made a point of telling her son that "Alivia should still be treated like a human even though she is disabled."

Is it wrong of me to expect these parents to teach their children not to take advantage of those who are weaker than them or less socially developed than them or younger than them? I don't expect them (neither the other kids or their parents) to take responsibility for Alivia when she is playing with them. But I am flabbergasted by the complete lack of empathy these seemingly educated parents show to my daughter and apparently condone in their children. 

To say that she should be "treated like a human"? Dear God, that in itself that implies that they believe she is something less than human. Honestly, it makes me question their humanity. 

My lease is up in nine months. I can't wait to move...

Jeana

Round and Round and Round We Go...

Lately we seem stuck in a never ending loop of undesirable behaviors. Last night, for the fourth time in seven days, Alivia has gotten into my makeup and emptied an entire container of loose powder all over the bathroom. I don't just mean she's gotten into the same container of powder four times... I've had to buy a new container each time and she's emptied each one! When I ask her why, the answer is "because I want to."
I'm beyond upset that she keeps doing this. And it's not just makeup... she is creating chaos in every room in the house, scattering things everywhere and, in many cases, destroying things. I've tried every disciplinary measure I can think of and nothing is working. It's literally to the point where I can't leave her unsupervised for even a minute and as a single parent that is an almost impossible task.
I know in my head that all of this is part and parcel of the FASD life, but it is still so hard to accept that this beautiful child, a seven year old who can be so charming and loving and is so good at solving problems, seemingly can't comprehend the simple logic of good choices earn rewards and bad choices earn consequences. Or maybe it's not that she can't comprehend it so much as that rewards and consequences have no value to her. When confronted she acts remorseful, but I think it's more that she's sorry she was caught than sorry she did it.
The stress of dealing with this has made one thing clear for me, although not what you might expect. I have come to realize that I need to devote some time to myself if I'm going to survive this. I've been looking around at some different options and I think I'm going to get us a membership at the Y. They provide up to two hours child care each day while the parents are working out--it would give me a chance to work out, swim, relax in the sauna, etc., without having to worry about her. My hope is that I can regain a healthy body and lifestyle and through that, find a renewed inner strength, as well.
Lord knows I need it...

~ Jeana

Mommy, My Think is Broken and Other Tales of Woe

A few months ago Alivia had what her teachers thought was an absence seizure during speech therapy at school. Our pediatrician referred us to neurology and they ran an EEG which was indeterminate. that was followed by a 48 hour mobile EEG test which was quite conclusive... Alivia has very frequent multi focal seizures that typically do not have any outward manifestation. After much debate and several consultations with neurologists, pediatricians, and geneticists, we opted to go the medication route to protect her brain.

The diagnosis was unexpected, but even more unexpected was Alivia's interpretation of all of this. On our way to the clinic to have her wired up for the 48 hour test, Alivia startled me when she asked me if the procedure would "fix her think." I asked her what she meant and she told me that her "think" was broken and she wanted to know if this was going to fix it.

I have no idea where her concept of this originated, but it occurs to me that it is really is a great way of describing FASD. Even better, I must admit, it has given Alivia a way to communicate about her issues that, hopefully, can help me to better understand her needs on a day to day basis. Most of the time it seems to work. When we have that occasional "good"day, I can ask her how her think is doing and she will tell me that it's getting better. When I see her struggling with impulsivity, attending, and other problem behaviors, I can ask her about her think and she will tell me that it's not having a good day or its not working,

Most of the time it seems to work, (Yes, I know I already said that.)

Sometimes, it doesn't. And that's when I know her "think" is really having problems. Yesterday was a case in point. It started out as a pretty good day. We met a friend for breakfast and Alivia behaved very well, but was perhaps a little distracted. By early afternoon, though, the tide had turned, and Alivia became an emotional and intractable train wreck. EVERYTHING was cause for tears--and not just a little crying, but outright inconsolable sobbing. I tried everything I could think of--cajoling, reasoning, sympathizing, even threatening, but nothing could stop the tears. And the worst part of it was she couldn't explain why she was upset. Nothing hurt; nothing was wrong; but everything was wrong at same time. The answer to nearly every question was "I don't know."

I asked her what she wanted and she answered that she wanted to go outside and play. I told her that she could as soon as she calmed down and stopped crying, but that just set off a new torrent. She finally calmed down enough that I could let her go outside, but along the way she decided to pull down the basket of easter eggs in the garage and check each one for coins. When I told her she had to pick them all up and put them in the basket it set off another meltdown, but she started doing as I had asked. It was taking forever, between her sobbing and taking the time to meticulously put each of the plastic eggs back together before putting them back in the basket, so I told her not to fix them, but to just put them in the basket so she could finish faster... big mistake! That set off a new explosion of emotion because she felt she needed to put them all back together.

Sigh...

On the advice of her psychologist we have started a token economy tied to behavior. When she exhibits good behaviors she gets rewarded with "coins" (magnetic disks that we painted like coins) put in a "treasure chest" that I painted on a white board. When she exhibits bad behaviors, "coins" get placed in the "trash can" I painted next to treasure chest. At the end of the day we subtract the value of the trashed coins from the treasure coins and that is her earnings for the day. She can then use her earnings to purchase special treats--a trip to McDonalds, a new puzzle or game, etc. It's meant to encourage good behavior while allowing her control over the incentive to keep it fresh. Days like yesterday make it difficult, though. By the time we were through she owed me money (a lot of money!) instead of the other way around... and yet how much of it was something entirely out of her control? She was simply and completely unable to regulate herself by any means yesterday, but there was no noticeable trigger or reason.

There are days when I am amazed at her unexpected flashes of brilliance and then there are days like yesterday when I am at a complete loss as to what to do to help her and how to survive with some small piece of my sanity intact. I've come to realize that in some ways Scarlett had it right and I just have to sit back and remember that, after all, tomorrow is another day!

Jeana

Back for More

It's been a crazy nine months!  It's taken lots of time and hard work to get it off the ground, but my new organization--the Florida FASD Resource Center--is finally up and running. I'm hoping that we will have lots to share as we continue to pick up momentum.  Be sure and stay tuned!

Jeana

Ups and Downs

The last few weeks have been filled with ups and downs--both literally and figuratively.

Up, then down... Alivia showed off her sheer fearlessness by tackling a rock wall at a Halloween festival. I put the video on YouTube (http://www.youtube.com/watch?v=H_RvOZvngpc) I love that she wanted to keep trying even after falling. She is one brave little girl. Another up...

On the down side, she has broken her glasses three separate times in the last few weeks. I have ordered a fourth pair with plastic frames that should be stronger than the three wire frame pairs we already have.

On the up side we got her first report card and it was all satisfactories. I am so proud of her!

Down again... one of my uncles passed away a couple weeks ago. Alivia was very well behaved at the visitation (up again) and very curious about death as is appropriate for a child of just six.

And so far we are still up... I asked Alivia to bring me a pad of paper from my bedroom upstairs and she not only brought the pad, but also a pen and my reading glasses. I was surprised, pleased, and proud to see her thinking. Actually thinking... what a concept!

IEP's, ABC's, and Snakes...

Today was our first IEP meeting with the new team. I'm really happy with the results and how cooperative everyone is. They asked for my input and listened to what I had to say. They asked for suggestions and also gave some good ones of their own. I think we are fortunate in a sense that the teachers at this school have some previous experience with a child with FASD. That and I was able to convince them early on that I know what I am talking about when it comes to dealing with Alivia. I hear such horror stories about parents being ignored by teachers and kids not getting the services they need, but I've been really blessed with good teachers, therapists, and administrators who have been willing to do whatever it takes to help Alivia. This team is all about challenging her, motivating her, and helping her to be as successful as she can be and I am thrilled to have them all involved!

One of Alivia's weak areas is writing skills. This goes back to impaired motor function from the FASD brain damage. We are going to be working with her intensively on this with writing practice and other fine motor skill development activities. Gran found a really cute buttoning activity and I am going to see if I can find the game "Operation". It has those little tweezers that you use to pick up bones and you get a buzzer if you touch the sides. It'll be a fun challenge for her.

I've been trying to find ways to encourage her to eat more, too. Sometimes she'll do better if she has helped prepare the meal, so I've been having her help me make dinner each night. She helped me make meatloaf a couple nights ago and her eyes simply lit up when I told her that, no, she could not have a spoon; meatloaf has to be mixed with your hands! It was so cute! And her meatloaf was great, too! Of coure, I did measure out the ingredients for her, but still! She got to choose the sauce (a hawaiian marinade with pineapple and terriyaki sauce) and it was really quite delicious!

Our other big challenge has been getting some play time each evening. We have an epidemic of poisonous snakes in our neighborhood--the drought is bringing them out of the woods in search of water. This means she can't go outside by herself as 1) she pays very little attention to her surroundings, and 2) if she did see one, she'd likely try to pick it up. So this means I have to be outside with her. We've been taking walks and visiting with all the neighborhood dogs... Last night we walked up to the drugstore (a mile and a half each way) and only saw two snakes--both rattlers--but most nights we see a water moccasin or two, as well. Scary! I've learned to carry a long stick with me just in case we get too close and I have to flip one away from us. Scary!

~ Jeana

A Princess Moment

This past weekend was a busy one for us. Alivia had an audition for Disney on Saturday. She didn't get a callback, but she did have fun! We followed that with making our own movie... a short video, actually, for the Disney Princess Moment contest. You can view the final cut online at http://princessmoment.disney.go.com/s/7ghrpo.

This week will be a busy one, as well. We had doctor appointments today, her school open house is on Thursday, and we have an IEP meeting on Friday. This will be the first IEP meeting with the new team, so I expect it will be a long one. This is just Livi's third week in this school, but she has definitely shown them her extremes, so I'll be interested to hear what they think. I'm going in armed with a few book and video titles for them to check out...

Speaking of our doctor appointments, I was disappointed to find Alivia has lost weight since her last checkup in July. She weighed in at just 31 lbs this morning with her shoes on. Not a good sign... It has really been a struggle lately to get her to eat dinner. Last week I asked my mom to cut back on the snacks and today's weigh-in "added weight" to my request. I'm hoping we can get her back on track soon! Looking for some new recipes to entice her...

~ Jeana