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.

School Project

One of the new things on Abby's therapy program is the "bean bag sandwich." For three minutes twice a day we squish and squash her in the bean bag, and she loves it! This may seem odd, but it helps her proprioreception and helps "organize" her brain. It is also calming for her if she is upset or not feeling well.


Ryan often asks me to squish him after I'm done with Abby. For some reason, it's popular with the kiddies. Today while I was doing this school project, he asked if he could take a picture of us, and I said sure. This is the picture he took.

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!

Small Progress

Our ND (neurodevelopmental) specialist told me that after two to three months of consistently having Abby on her ND program we would start to see some progress, so that's what I have been expecting. However, after only two weeks on the program, she is already showing some encouraging signs of improvement! She is making much better eye contact, seems a bit less distractable, and is even following directions better. It's small progress but very encouraging for me and Daddy!!!

Overall she seems to like the activities we do with her each day. She will even ask to do a couple of them that she really likes. There are one or two things that she fusses about doing, but I've noticed that as she is getting better at doing them, she is fussing less. The army crawl is one she just hates to do, but she has to do it for three minutes five days a week. She gets pretty worn out by the end of the three minutes, but she is complaining less than she was ten days ago.

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!