Abigail seems to really benefit from swimming, so we put the kids back in another session this month. Any activity where she has to use both sides of her body at the same time and makes her brain "cross" over both sides is really good for her. Plus, she absolutely LOVES it, particularly being underwater.

We will take a couple weeks off and then sign them up for the summer session of lessons. Hopefully she will do well among lots of other kids. We have been spoiled with our small classes of two or three!

Knows Her Alphabet

About halfway through our Letter-of-the-Week study of the alphabet, Abby began to struggle a bit. I decided to buy the Leap Frog Letter Factory DVD because I had heard some good things about it. I didn't have very high expectations since my experience in the "educational" toy market has taught me that there is usually very little in the way of education and much more in the realm of entertainment.

However, I was pleasantly surprised! After watching it just a few times, I saw dramatic improvement in her ability to retain the names of the letters she had already "learned," and she quickly picked up several new ones we hadn't gone over yet. In addition, she was learning the sounds they make and retaining the information really well. Retention is difficult for Abby, indeed for most kids with FASD (Fetal Alcohol Spectrum Disorder), so this was very encouraging for me.

She now knows her entire alphabet and is very proud. I purchased the Leap Frog - Talking Words Factory and told her she could watch it as soon as she learned all her letters, so she's excited that she can now watch this one as well!

Celebrating

Well, it's been a LONG road to potty training success for Abigail. We first began thinking of potty training back in July of 2005 when she was a little over two years old. Then last January she was doing great with it, but then she had her regression or whatever it was that caused such stress and turmoil in our home for the better part of the year. Since then potty training has been an exercise in futility and frustration for everyone in our household...until last month.


Something clicked for Abby last month and she began having dry days and going to the bathroom all on her own at times. Today I am VERY proud (not to mention relieved) to report that Abigail has not had a single accident for seven whole days!!!! She at long last earned her Princess Phone that Gramie gave her as an incentive almost a year ago. She is so excited, and I think she's feeling much better about herself. I am hoping this is "it" for her and we are past this milestone. If she can continue without any accidents for another couple of weeks she will get her final reward that she has been wanting for two years. Stay tuned for further updates!

Water Bug

The kids are taking swimming lessons again with our homeschool group. It's nice because there are just three children in the class, so they each get lots of individual attention! Abigail is such a little water bug. She loves the feel of the water and now that she's actually learning to use her arms, it's so very good for her! Cross-over activities (using both sides of the body at the same time, hence both sides of the brain) are really good for kids with sensory issues, FAE, and other neurodevelopmental problems.

Difficult Decision

We have been a little puzzled by some changes in Abby recently. Ever since the beginning of August our lives have been pretty busy with camping, a trip to Seattle, and a long trip to California, and we have not done any of her therapy program (with the exception of stopping the self-stimming behavior). Yet in that time she has progressed back to the point or even better than she was a year ago when all this regression started (with the exception of not being potty trained still). She still has a lot of "issues," but we just aren't seeing the same disturbing behavior that we were back at the beginning of the year.

So we're wondering if the therapy has been helping all these months and she's now rapidly reaping the benefit of that, or did it just go away, or is she just maturing and growing up and out of some of this stuff? During the time we were doing therapy we didn't see this much progress, so now that we've stopped and are seeing a return to her "normal" self, we are questioning whether we need to continue the therapy.

After some prayer and discussion with hubby, we have made the hard decision to cancel her next appointment with the neurodevelopmental specialist. I hope we don't undo all we've done, but at this point we don't see the need to put Abby--and me--through the program. She had really begun to hate doing her program every day, and when she found out we weren't doing it anymore, she was so excited!

Another factor in our decision is that we have two appointments with a specialist recommended by our pediatrician back in June. We couldn't get in for five months, but we will see him this month. I am a bit skeptical about these visits, but I'm willing to listen and hear what they have to offer. Afterall, we did ask our ped for advice, and it would probably be a good idea to follow through with his advice instead of just dismissing it without checking it out, huh?

All this to say, please pray for wisdom and guidance for us. I am truly shocked and dismayed that there really are no specialists in the area of FASD, and no one really seems to know what to do. Most treatment is parent driven and I sometimes feel like an explorer lost in a world completely unfamiliar to me yet refusing to believe that medication and/or doing nothing are my only options. If that turns out to be the case after all my searching, so be it. But for now, I am not going to be content with that. Abigail is an incredibly bright (and beautiful, I might add) child who just needs help in reaching her potential!

Lord, help me help her, please.

Her Impulsiveness/Our Paranoia

One of things we are trying to work on with Abby is her impulsiveness. She seems unable at times to control herself, often to her own endangerment. It's a classic symptom of FAE/FAS, but whether it's that or just her personality, we don't know. I know some people think we're somewhat uptight regarding her, but we just never know when she will suddenly dart out into a busy street or pick up something vile off the ground and shove it into her mouth. I can let Ryan walk on a sidewalk by a busy road without holding my hand and not worry about him, but I wouldn't even dream of letting Abby do that!


When we arrived at our campsite and saw that our nice creek side campsite (I reserved it on the interent) turned out to be about a 20-foot steep hillside that led down to a shallow and narrow but swift-running river, I felt my stomach turn. So I pulled Abby over to the edge of the embankment and showed her how easily she could fall, then took her down to the river and showed her how quickly the water was moving. Then I did what all good parents do (don't they?)...I bribed her. It doesn't always work with her, in fact, it rarely does, but it was worth a shot! I told her if she would stay up on the embankment and not go over the edge or down to the river without Mommy or Daddy the whole time we were there, I would give her a special treat when we got home. She kept bringing it up and reminding us that she was obeying and wanted her treat when we got home, and lo and behold, she did it! She didn't once give me a scare about her getting too near the trail or anything. When we got home, I gave her a treat I had stashed away, a small (think Polly Pocket size) Cinderella doll with clothes and shoes and even "glass" slippers. She was thrilled and has been thanking me ever since!


We had some other "tests" during our camping trip. We were hiking and geocaching and the trail brought us to the top of the Dorena Dam. We walked out on it, and while Ryan was holding our hand too, we were squeezing the life out of Abby's hand. It would be just like her to lean between the rails to point to something and slip and fall over or see some bug flying just out of reach and stretch out to grab it...the ways she could thoughtlessly endanger herself goes on and on.


On our last hike we were on a very well-paved trail going around the lake, and from time to time the edge would be a pretty steep dropoff, so we would take Abby's hand and make her walk alongside us for those stretches. She really prefers to run ahead of us, and when it's safe, we let her. On one stretch that seemed safe, she was running ahead and I was snapping some pictures. Our usual routine is when she gets a ways out in front, we call to her and have her either stop and wait for us or come back to us. This time when we called, either she didn't hear us or she chose to ignore us and she kept on running. Suddenly she darted off the side of the trail and we couldn't see her anymore. We yelled as loud as we could for her to come to us while we were running to catch up to her. There was a bench off the trail a bit, and she had gone to sit on it...but talk about giving me a scare!


After administering some discipline, we sat on the bench, took her to the edge of the steep dropoff, and again talked about how important it is to obey Mommy and Daddy and how we make rules for her safety and for her good (the rule was to not leave the path).



As I read through this post for typos, I'm aware of how paranoid I sound, but I also remember that we've seen her dart into the road because she saw a "beautiful" piece of trash or a leaf she wanted completely heedless of the cars and we've pulled her back from the brink of disaster countless times in myriads of situations. We try to give her space and freedom to fall and get "reasonably" hurt on the playground or other such places where her life isn't endangered, hoping it will help her learn some awareness of danger, and I think it's slowly helping. But in the meantime, we guard her closely and thank God for the angels He's given watch over her (I'm sure she must have more than one!).

Overdue Update

I haven't really posted about Abby's progress in a while. She had both her four-year checkup with her pediatrician and her revisit with her neurodevelopmental specialist (ND) in June. I am always a little torn about how much information to put in my blogs. I use them personally for an online journal for the kids, and I know some family and friends keep up on our lives by reading them. I also want to be an encouragement to anyone struggling with a special needs child, specifically with the issues Abby faces.

However, the last couple months have been very difficult and stressful, and no one wants to read about that and I don't want to remember the hard stuff. I like to look back over my blogs and read the highlights of our lives. It helps me remember that all is not dark and all is not stressful, and we DO have fun and enjoy each other. On the flip side, it can be encouraging to look back and see what trials the Lord has brought us through, how we've grown through the difficult times, and hopefully bring some encouragement to others along the way.

So the facts are that Abby is now the same height as Ryan (he is NOT pleased)! At her checkup she was 95 percentile in height and 85 percentile in weight (she weighs three pounds less than Ryan). There is nothing else remarkable to report from a physiological standpoint.

She made good progress at her revisit with the ND, who was very pleased with her gains. Her ND also was very impressed at her cognitive development. She sees no cognitive delay and says Abby is quite intelligent. Of course, we already knew that! She overhauled our program for Abby, paring it down by about two hours at my request. We are doing some new things, and Abby is enjoying it again. I am feeling better about it too since it is shorter and easier to get done every day.

Her pediatrician kind of got tunnel vision as soon as we began talking to him about some of her behavioral issues though. He thinks she may have Attention Deficit Disorder and brought up the possibility of medicating her. We are quite resistant to that idea (though there are days I've seriously considered it!), and after some more talking he decided to do some investigating. I have done quite a bit of reading and research on sensory integration dysfunction (SID), fetal alcohol spectrum disorders (FASD), autism, pervasive developmental delay (PDD), attention deficit disorder (ADD), etc. I know I'm not a physician, but I am convinced her "issues" stem from her alcohol exposure prenatally.

My gut instincts tell me that if we treat her for ADD or ADHD, we will only be treating the symptoms. I don't want to fix the symptoms (okay, some days I'd settle for that). I want to get to the cause of the symptoms and do my best to treat that. After quite a bit of talking, our pediatrician said he'd investigate some of the questions we raised, and he ended up giving us a referral to a behavioral pediatrician instead of going the medication route. He said he consulted with this doctor about Abigail and the specialist was "very excited" to see her and thought he could really help her, probably without medication, though he left that on the table for a possibility.

Our pediatrician told me that this doctor is very much in demand, so I wasn't too surprised when I called and was told she couldn't get in until October. In the meantime we will continue with what we're doing. It IS helping her, albeit, slower than I'd like. I have been doing quite a bit of research on FASD and may do a couple of posts on what I've found, Lord willing. In the meantime, we are grateful for your prayers!

Another Progress Report

I am having a terrible time keeping up my blogs, but I did make a point today to write a couple of posts while the kids were having their quiet time. I forgot I had started this post a couple weeks ago but hadn't finished it, so I just posted it today but wanted to give a little more detail in this post. I uploaded these short videos to show some of the activities we do with her each day. She doesn't really like these particular ones, but she is a trooper and does them when we ask her to.

This is called Seesaw.
Abby is making some small progress. We have noticed that she is making much better eye contact, she is doing better in following directions, and she is not "mouthing" things nearly as much. We've been doing her new program for a month now, and it seems to be helping, though not as rapidly as I would like, of course.


This is called Cross on Back.
This may seem minor to some reading this, but it was a huge thing for Daddy and me: We told Abby to go put her jammies on one evening...and SHE DID IT! Whoo-hoo, big happy dance! We then told her to put away her Noah's Ark she had been playing with...and SHE DID IT! I can't remember the third thing, but we told her to do something else as well, and she did it also!

Normally, she gets too distracted on her way to do something that she forgets all about it and doesn't complete the task, or she is overwhelmed by the task and can't even begin it. We usually have to stand in her room and give commands like, "Pick up the zebra and put it in the ark, pick up the giraffe and put it in the ark, pick up Noah and put him in the ark," and so on ad nauseum until the task is complete. So this was a big deal!!! She's not consistently doing this but it IS happening occassionally, and I am encouraged by the little steps we see.


This, of course, is the army crawl.
She has also stopped the biting she was doing, at least for the most part. She still puts her fingers in her mouth quite a bit, but I haven't seen any actual chewing on anything in several weeks. Unfortunately, she seems to have replaced that behavior with touching everything. She puts her hands in her milk, yogurt, etc., and the bathroom sink is her new toy. I talked to the ND about it, and she said that actually it is a sign of progression. She is discovering her hands (like a six-month-old would), and is wanting to know what everything feels like. So she gave me some things to do with her to help that behavior as well.


This one is called Tiger Creep.
Potty training is still on hold since she just doesn't seem to be able to distinguish the sensations necessary to be successful at it right now. She will go if I tell her to, but she's not recognizing it on her own consistently enough for me to stress over it right now. We will try again in a couple months. I feel bad because she's going to be four tomorrow and she's still in Pull-ups, but since there's nothing I can do to change it, I'll just have to get over it.

Thanks to all who are keeping us in your prayers! (Don't stop, we still need them!) We are doing well over all. Ryan seems to have made his adjustments and is even showing some signs of budding maturity lately, so thanks for the prayers regarding him as well!

Patterns

One of the activities we are doing with Abby is a series of patterns designed to help organize the brain. Anything that uses the limbs and crosses over the body or uses the limbs on opposite sides of the body is good for this, such as crawling. This one is called Tuck in/Blast out, and the first couple of days she did this, it was very difficult for her, but she's got the hang of it now. We do this 50 times in a row and then three other patterns 50 times each right after. It wears her out!

"Doing School"

Though at first I was pretty overwhelmed with everything I was going to have to do with Abigail on her new program, after breaking it down into smaller chunks, I felt much better. I made up index cards with about 15 minutes worth of activities on each one, and I have started working through them one card at a time throughout the day. Daddy is also helping with a card or two in the evenings. The last few days I have been telling her we're going to do school like Ryan, and she thinks that great! So while he is learning his math facts and/or writing, Abby is learning how to retrain her brain! This has been working great so far and since Ryan can do his math and writing without much assistance from me, this doesn't feel like I'm adding too much to our morning since I used to spend that time with Abby reading stories or something anyway.

Our cute little "bug!"

Some of the time doesn't involve direct one-on-one time with me, like wearing her pinhole glasses. She has to wear these for 15 minutes twice a day while watching DVD. Marilee said most kids will want to take them off, but Abby has been very good about leaving them on thankfully. These pinhole glasses are supposed to force her to use her central vision since you can't see out of them peripherally. Once she is using her central vision normally, she should stop doing some of the self-stimulating behaviors such as shaking things (anything and everything) beside her face, dangling strings, etc.

Listening to Mozart...which she LOVES!

I have been starting out slowly on the program and adding more each day. Tomorrow we should be almost up to full program with the exception of a few things I can't do until I get the supplies (such as the nutritional supplements). I'll also try to post some video of some of the fun things we are doing with Abby. I'm so grateful she likes just about everything we do!

Neurodevelopmental Evaluation

We had a very long but fruitful weekend. We left the house a few minutes before 5:00am on Friday and drove about 12 hours to Modesto, California. The kids were amazingly good and really enjoyed our surprise of a dual screen DVD player for the car! We only have one set of child-size headphones, so the kids were trading off and on with those while the other one was left to keep pushing them up on their ears. I tried to improvise with a pair of socks (which had us all cracking up every time we looked at her), but it didn't work too well. Another set of kid-size headphones is definitely on the list to buy!


The kids were thrilled to see Gramie was already at the hotel waiting for us. As usual she had brought all kinds of goodies for the kids (and for Mommy and Daddy). She took us out to a nice dinner that night, and then we went back to the hotel for baths and bedtime. Ryan fell asleep fairly quickly, but Abby didn't get to sleep until after 11:00! She was WAY overstimulated, and it takes her a long time to settle down when she's like that.


We got up and took Abby to her appointment at 8:00am on Saturday. Abby warmed up to Marilee very quickly and was very cooperative during the whole evaluation. As we expected, she is hyposensitive in her tactile, proprioreceptive and vestibular senses. We also learned that she uses her peripheral vision much more than her central vision (this doesn't have to do with 20/20 sight but with how the brain functions in conjunction with the eyes. She has very good vision.), which was a bit surprising and cleared up a few things for me, namely, that she doesn't make eye contact even when I am holding her face in my hand and trying to force her to look me in the eye!



We were then asked to wait about 30 minutes while she put together our INP (individual neurodevelopment plan). We were given about 4 1/2 hours of activities to do five days a week (some are seven days) with her. It was also recommended that we have an assesment done and get her on some mineral and electrolyte supplements to help with her metabolic issues. We got back to the hotel at about noon, so the whole evaluation took about four hours.

We were a bit overwhelmed, but after reading through some of the handouts and watching some of the videos provided, we felt much better. It was so wonderful to have my mom there to watch Ryan during the eval and to play with both of them while we processed the information and planned out how we would implement everything!

After lunch we went to the Great Valley Museum that turned out to be much better than it looked on the outside and was definitely worth the $3 per family admission price! The kids had a great time looking at all the taxidermied animals and playing with the hands-on stuff for the kids, as well as seeing some real snakes, frogs, tarantulas, etc.


We had another yummy dinner, and headed back to the hotel for bed. Abby again had trouble getting to sleep, but Mommy and Daddy had no trouble whatsoever. After breakfast we thanked Gramie, said goodbye to her and left for home at about 9:30am. It was a VERY long drive home. It took 14 hours due to needing to stop more and to a big mess we needed to stop and clean up in the van (can you guess who made the mess?), so we pulled into the garage at about 11:30pm and crashed into bed. Abby didn't even fall asleep until after we left Salem (which is only an hour from home), and Ryan didn't fall asleep till Scappoose (10 minutes from home)!

Regression

Having lunch at Subway.

Abby has had some sort of regression. We don't know what triggered it or exactly what's going on with her, but for the last six weeks or so she has started doing things that she hasn't done for two years. She is biting everything, drooling off and on again, engaging in lots of sensory play, etc. Her potty training is stalled or going backwards and involves messes you don't even want to know about. Her impulse control has never been great, but the last six weeks it has been almost nonexistent.

We called her neurodevelopmental specialist only to find out she no longer works at the clinic, and we haven't been able to locate her. It's a long, complicated story, but we really can no longer attend the clinic where we were once "regulars," mostly due to Abby's age. I have been researching and trying to find some answers because things just cannot continue as they are.

Through a very unlikely source, I heard about ICAN, and I sincerely believe the Lord led me to this group! Though they don't have an associate in the Portland area, there is one, Marilee Coots, who travels here several times a year. I have been talking to her and have set up an appointment to have Abigail evaluated and a treatment plan designed in Modesto next month (we don't want to wait till June when they will be in Portland). Though her website's focus is helping with learning disorders, she has dealt extensively with FAS/FAE children and drug-effected children, and it was a relief to talk to someone who understood Abby so well even without seeing her.

Many doctors believe that children with Fetal Alcohol Effects (FAE) are permanently brain damaged and there's nothing you can do about it. While it's true Abby has permanent brain damage and the connections aren't being made correctly, neurodevelopmental specialists believe that the brain has plasticity and can be retrained or remapped to give her another way to access the information and intelligence that is there but not able to be used efficiently. We have seen this to be true and are not willing to give up on our precious girl! If you feel led to, please pray for her and us. It has been a stressful and exhausting year so far for our whole family.