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

My Little Fish

Alivia, like many kids with FASD, has an unexpected talent. Unexpected because it took her so long to master gross motor skills, not to mention the fine ones. Alivia, however, did master most of the gross ones and is now quite the little fish! She still has some issues with balance, hopping, and jumping, but put her in the water and she can swim like a mermaid!

I recently got her a pair of swim fins (Disney princess themed at Walgreens for $15) and she can really get around the pool quickly with them. It's all I can do to keep out of her reach and I'm a fairly good swimmer myself. Today we took turns swimming laps and she just about wore me out! (grin)

Alivia has no body fat at all (I can't begin to express how jealous I am!) and can't float alone, so she still has to swim with a "bubble." (She used to have to wear two of them, but recently graduated to just one.) I still make sure I keep her in sight and can get to her quickly if needed, but she really impressed me today doing the laps. Our pool is nearly olympic sized and she didn't struggle at all. (Which has the added benefit of allowing me to get in much more actual swimming than I usually can, as well!)

Her fins came with a mask and snorkel and she got to try them out for the first time today. At first she was kind of panicked because the mask blocked her nose and she didn't trust the snorkel. I had to make her sit on the side of the pool for a minute with the mask and snorkel and practice breathing--after that she was fine. The only problem we encountered was that she loves to dive and that, of course, made the snorkel fill with water. A little more practice, though, and she's going to have it down!

I'm so excited to see her doing this--especially when it's something I struggle with. I have a really hard time trusting a snorkel myself. With me it's all psychological. I just don't feel like I'm able to get enough air. I'm going to try my best to get over that, though, as I have a funny feeling I have a few snorkeling expeditions coming up with my daughter in the not too distant future...

Let's hear it for our wonderful kids and their amazing talents and triumphs!

~ Jeana

Not Looking Forward to Puberty...

There are days I just have to wonder... Alivia can have some incredibly wide mood swings in a matter of a few minutes. One minute she's sad, the next she's mad, and the next she's laughing--sometimes almost manically. The roller coaster ride usually only lasts a half hour or so, but can go on for hours. It often happens right after a nap--a thing most kids find rejuvenating but which can sometimes be emotionally devastating for Alivia. So far I haven't been able to find any kind of common denominator for the episodes. Yesterday was a case in point.

I arrived at my mother's house to pick Alivia up at about 5:15. She had just awakened from a nap about ten minutes before that and, according to my mom, had been fine. As soon as I walked in the door, however, she burst into tears, and when I asked what was wrong, she couldn't tell me. Then she got mad, crossed her arms, and insisted she wanted to go home and play with her friends. A minute later she was all smiles and "mama, look at me!" as she showed off a new dance move, then a minute later crying because I was folding laundry without her. As soon as I told her she could help she was over the top laughing and hugging me. Then moments later she was crying in frustration because a shirt was inside out and she couldn't fix it.

Please understand, the timings I've given are not exaggerations! This all happened in less than five minutes time. And this is a regular occurrence for us. I could understand it better if it only happened when she was awakened prematurely. I have trouble regulating my mood when I don't get enough sleep. With Alivia, though, it can happen even after a nice long nap that she's awakened from naturally. She's plenty rested, but she's not able to regulate her emotions at all. I know it's an effect of the FASD, but it can be really challenging to deal with as a parent. And if she's like this at six, I can't imagine what she'll be like at puberty...

Yikes!

~ Jeana

A Rough Weekend and Back to School

The best laid plans and all that... I decided to take an extra day off last week to give myself time to finish up Alivia's bed, but things didn't quite work out that way. Instead I spent a full two days of my 4-day weekend getting the car fixed, one day in bed with a migraine, and the final day making it all up to Alivia who managed to stay out of trouble for the most part.

On the positive side, the car repairs only cost me $140. MANY, MANY thanks to Dirk in the service department at Key Hyundai for his assistance with that! I cannot begin to express how much I appreciate your kind (and free!!) help. Thanks also to the very kind associate at AutoZone for the free jump and suggestions as to the likely problem and probable solution. And major kudos to the AAA tech for stopping to help me even though I'm not a current member--and not charging for the service. You guys were all Godsends when I needed them most!

Today marked Alivia's return to school--and this year it really starts to count. She started kindergarten! I think she was more excited about riding the bus than anything else, but I'm thrilled to see how much she enjoys going to school. Her class is extremely small for the moment--only four kids--and she is the only girl. They will likely gain more students as the year progresses, but I think the cap is eleven. She'll probably remain the only girl. Her teacher was excited to finally have a girl in the class. I guess autism effects boys much more often than girls. Anyway, I appreciate the extremely low student to teacher ration as it gives Alivia a chance to adjust to the new environment with fewer distractions and allows her teacher to get to know her much more quickly than might otherwise happen.

Now, if I could only finish her bed...

~ Jeana

The FASD Knot (or FASD Not!)

One of my fellow bloggers brought up a question about a ribbon for FASD and wondered if it ought to have a big knot tied in it to represent the tangled brains our kids have. That got me thinking which always gets me surfing and low and behold... there actually is an FASD Knot! Here's the link: http://www.come-over.to/FASWORLD/fasknot.htm

And just so you don't have to go to the link to learn all about it... here's the background, symbolism, directions and a photo for those of you who want to create your own:

We have been pleased by the enthusiasm that volunteers from New Zealand to northern Canada have expressed for our new wearable symbol, the "FAS Knot." Each FAS Knot can be easily made in about a minute, for less than ten cents, and can be used as a fund-raiser ($2-$3 each) or given away as promotion.

This piece of knotted cord was designed in memory of Abel Dorris, 1968-1991, whose brief and poignant life resulted in the groundbreaking 1989 book about Fetal Alcohol Syndrome, "The Broken Cord," written by his father, Michael Dorris, 1945-1997.

The broken cord may refer to the umbilical cord, the spinal cord, the nervous system, the cord between the generations, or the cable on an elevator. Michael Dorris wrote that if we back off on our children with Fetal Alcohol Syndrome or Fetal Alcohol Effects, they will sink like an elevator once the cable is snapped.

Ten years later, a loving community around the world is reconnecting the broken cord, and the FAS Knot is our symbol. The cord is tied in a square knot, sometimes called a reef knot, the favored knot for reconnecting a broken line or cord. The knot is stronger than the cord itself, and cannot be broken or snapped.

To make the FAS Knot, we suggest an eight-inch piece of 3/16" white cord (figure #1), available in most hardware stores for a few cents per foot. You make a circle approximately the size of your thumb (figure #2), then tie right over left and under (figure #3); left over right and under. It should look like two loops intertwined(figure #4).

By choosing a cord instead of a ribbon, we are separating ourselves from all of the other disorders. We are not just another cause trying to raise money -- we represent those millions of individuals and their families who have gone unrecognized, unidentified, neglected on this continent and throughout the world.

The circle symbolizes the womb, a baby's head, the human brain, the earth. And we, a planet-size network of people who care about people living with FAS, are the knot that will make them whole. If women did not drink in pregnancy, FAS would be totally eliminated. Our long-range goal is to rename this small piece of cord, "The FAS Not!"

Personally, I like the symbolism of using a cord instead of a ribbon. The strands of the cord to me represent the frayed neural strands of the brain. My only addition to this would be a small pin that says FASD or No Safe Amount or something along those lines. I wonder what it would cost to get a batch of those made... back to surfing I guess!

~ Jeana

FASD Workshop

FASCETS is offering a three day workshop for parents and professionals who support individuals with FASDs. Registration is $325 and includes handouts, some meals, etc. I don't know if I can swing it this year, but I'm going to try... Besides, I've never been to Oregon... ;-)

FETAL ALCOHOL & OTHER NEUROBEHAVIORAL CONDITIONS: Understanding & Application of a Brain-Based Approach - A Three-Day Workshop for Parents and Professionals

October 20-22, 2011
Mark Spencer Hotel
409 SW 11th Avenue
Portland, Oregon
Contact: Wendy Temko
Phone: 503-621-1271
E-mail: wtemko@fascets.org (preferred)
Web site: www.fascets.org

This workshop will provide information about FASD and the effects of alcohol and other drugs on the behaviors of children, adolescents, and adults. FASD is a brain-based condition. The workshop will educate you on the current status of research, and an evidence-based best practices approach. Case examples of successful diagnosis, treatment, and accommodation are central to this workshop.

~ Jeana

The End of Summer Swim Class

Last week was the end of summer swim class and we have a month before the fall sessions start. I'm hoping Alivia and I can spend some quality time at the pool over the next few weeks and keep her skills up. Alivia has mastered all the requirements for the youth class except floating on her own, so she'll be (thankfully!!!) staying with the preschool class in the fall. She's smaller than most of the preschool kids and they have a smaller student to coach ratio, so I'm hoping to keep her in that group until at least the end of the year. Once she masters the ability to float, we can start looking at the diving class for her--she absolutely loves to dive! And I can see progress being made--we've gone from two support bubbles to just one and she's able to manage fairly well until she starts getting tired.

I was really enjoying the classes, too--Livi did well and had a great time and I got to socialize with a couple of the other moms. Livi and I hosted a couple of the girls and their moms at a swim party at our pool and everyone had a terrific time. I'm hoping to repeat it this Friday--mental note that I need to remember to send out the invites! I didn't realize how much I missed that interaction with other moms until I had it back again. And these two moms in particular, Lena and Suzanne, are so great to be with--laid back, accepting, and just all round great ladies.

Things are still going great in the sleeping arrangements arena. Alivia still loves her new bed and is staying in it all night. I'm not sure if the difference is that it's a big girl bed or that she sleeps really well on the new mattress. It's one of those memory foam mattresses that has to be tons more comfortable than the crib mattress we used on the toddler bed.

I'm still working on the final bed details--some corner braces and such, but am almost done. I also put up a huge castle mural on the wall beside the top bunk. Alivia loves it. I just hope it stays in place--the wall is rather textured which makes it hard to get the mural to stick. It looks really cool, though! Pictures coming soon, I promise!

In our adventures with FASD we have added yet another player to our little scene. In addition to her imaginary friends Cory and Zachery, Livi now has an old man named Ren (Wren? Who knows?). I have no idea where he came from or what his purpose is. So far she's only mentioned him a couple times. Dr. P feels that Livi is using her imaginary friends as kind of scapegoats for herself when she misbehaves and that they will fade out as she develops more self discipline and control. Since they have gone from being the same size as her to fitting in her hands, he thought that we might be seeing that phasing out starting, but I'm worried now that she's adding another character. I'm looking forward to our next session where I can bring it up.

My other Alivia challenge for today was trying to get her transportation issues settled for school. The bus will pick her up at my house in the morning and is supposed to drop her off at my mom's house in the evening. The school board is trying to finagle that last part right now. The problem is that my mom lives in a different school's bus area and the severe budget cuts are making it difficult to provide the additional covereage. (All the local magnet school kids have to provide their own transportation this year for the first time. Livi is in the special needs category so they are supposed to accommodate her if they can...) I'm hoping to have it all settled tomorrow.

So much for today...

~ Jeana

Trying to Slow Down...

The last week and a half have been crazy. I finally "finished" Alivia's bed. Still need to add some trim, but she's been sleeping in it for a week now and loves it. The bed was an incredibly consuming project taking up all my weekends for the past month plus. We were literally working on it all day and way into the night. I'm pleased with the result, though. It was definitely worth the time and effort! Livi loves the personalization and I love the sense of accomplishment! I've never designed and built a bed before!

I read a report on some new FASD research recently that supported something I already suspected from my own research on brain injury. It basically said that giving kids tasks that involve fine motor skills and increasing the difficulty as they become more adept helps to improve memory and cognitive function in kids with FASDs. My struggle has been finding a task that Alivia enjoys enough to persist at, but I think we finally have one--video games! Alivia loves playing Mario Karts and Toy Story on our Wii. She's not very good at either yet, but I am seeing improvement in her gaming skills and hope that this will eventually pay off with improvement in her memory, problem solving, and attention span.

She also surprised me big time a couple nights ago. She had opened one of the Wii game boxes and pulled out the instruction booklet which she promptly began to shred. (Alivia shreds every bit of paper she can get her eager little hands on.) When I scolded her and told her to put the paper back in the box she got frustrated and started to throw a fit. Out of patience, I told her to go upstairs and go to bed. She walked to the stairs and stood there crying for a couple minutes then got quiet. Another minute went by and she suddenly marched herself back into the living room and started picking up the paper. When I (cautiously) asked her what she was doing, she replied that she was cleaning up her mess. She then followed that up with an apology for making the mess. Wow... Some days I get so frustrated with her that it's so easy to forget she really is six years old and actually pretty smart, then she does something like this to remind me.

The other big news for the week--I went to my first FASD Family Support Group meeting. The group had disbanded when I went looking for it a couple years ago, but started up again this month. I enjoyed having the opportunity to interact personally with other people who can relate to exactly what I am going through. People who haven't experienced it just don't understand. Even some people who are experiencing it with me don't understand. They can't come out of denial long enough to deal with the reality. It was wonderful to be able to cry and to be able to laugh and to not have to worry that anyone was judging me as a parent or thought I was exaggerating when I talked our experiences. I can't wait for the next meeting!

In the meantime, I am trying to slow down... seriously! I'm going to take a couple semesters off from teaching and try to spend more time with Alivia and also try to spend more time on myself. I'm hoping to start an exercise regiment and maybe start taking advantage of PumpItUp's parents nights out on the first Friday of each month. I could go see a movie that's not rated G...

~ Jeana

Have I Mentioned How Much I Hate to Repeat Myself?

I've always struggled with patience and, as a result, have always encountered challenges that tested me to and beyond my limits. I used to wonder why, but since adopting Alivia it has become obvious. I need every scrap of patience I can scrounge up and then some to deal with the day to day of living with someone with FASD. Nothing is ever heard the first time you say it. Nor the second. Usually not the third either. Actually, it's not that it's not heard, but that it's not processed. Once it is processed, it's often promptly forgotten, leading to yet another round of repetitions. I really, I mean REALLY, hate to repeat myself.

Then there's the other side of the coin where something is mentioned just once, totally as an aside to a conversation, and it gets locked into her little brain FOREVER! Or that overheard curse word that suddenly becomes her favorite word to say... Yes, I know I shouldn't curse in front of her, but that kind of leads me back to the previous paragraph. Did I mention how much I hate to repeat myself?

I know that part of the problem is her total lack of impulse control. She gets an idea to do something and she can't not do it (double negatives intended!) I've also learned not to tell her not to do something (example--don't touch the stove) unless it's something I really do want her to do. She can't resist doing that thing that she is told not to do--even if it had never occurred to her to do it before I mentioned it.

On another note... This weekend we (a friend and me) will be finishing building Alivia's new bed. It's a loft bed with a play area beneath that can become a bed if we have a guest. Alivia is really excited about it and keeps asking when it will be ready. I hope she'll use it... I'd really like to have my bed back all to myself again. Well, me and the two cats, anyway. I'll post pics once we get it done!

~ Jeana

From the Mouths of Babes

About a year ago, my then five year old daughter Alivia found a unique way to express her frustration and said to me, "Mama, you're crackin' me crazy!" It struck me immediately how appropriate this phrase was for her. Alivia has fetal alcohol syndrome and has actual necrotic spots on her brain from the alcohol her birth mother consumed while she was pregnant. I've seen them--on an MRI--and try to keep that image in my head when Alivia is doing something that drives me crazy... which is a lot of the time. It's something I think most parents of kids with FASD have to do--remind themselves that their child can't help it, that their behaviors, their learning difficulties and memory problems, all their related problems are the outward indicators of an irreparable physical injury resulting from alcohol consumption while they were still in the womb.

FASD is characterized by a collection of behaviors, physical features, and health/neurological issues which may or may not be present in a given person depending on when the mother drank. In other words, no two kids are affected exactly the same way. Some kids show no physical anomalies and others, like my daughter, exhibit the typical smooth philtrum, wide spaced eyes, thin upper lip, and flat midface. Some appear completely normal in size; others, like my daughter, are extremely small for their age. And even though Alivia has the physical characteristics, she appears normal enough that most people just think she is younger than she actually is. Her peers are generally a good 6 to 8 inches taller than she is and more than double her weight. Some kids have such severe damage to the brain that they have below normal IQ's. Alivia is very intelligent, but struggles with some learning disabilities--much like a child with ADHD and dyslexia. The parts of her brain that are damaged are the parts that control things like sensory processing, impulsivity, and self-regulation.

You would think that knowing all this, that having seen that MRI would make it easier for me to deal with it. More patient and understanding. Sometimes it does--especially when I see other people becoming frustrated with her. But I have to admit that there are times when I get lulled by the seeming normalcy of a good day and I set my expectations too high only to have them blown out of the water (along with my temper) when Alivia is unable to cope/calm down/listen/follow directions/or whatever it is that day. Sometimes she cracks me crazy, too.

~ Jeana