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