Friday, October 15, 2010

I need some advice

On October 30, we are participating in the First Annual Stroll.athon for Rett Syndrome in South Florida. This is the first fundraising event that we have taken part in.

When you have a child with Rett Syndrome (or any type of incurable special need) you feel very, very helpless. I take her to therapies, give her medicines, subject her to medical tests, and advocate for her at school but there is still only a small return on all of that investment. My child still doesn't always acknowledge me when I walk into the room. She refuses to play with me or allow me to help her. She needs help with every activity of daily life- eating, dressing, toileting, and even communicating. It's a labor of love and I do it every day, all day, because I love my girl so much.

This helpless feeling leads to advocacy. Raising awareness and fundraising for Rett Syndrome research is all I can do. Especially at this point in my life, where I am dealing with secondary infertility and wondering if I will ever have another child. Allison is it for me and I am going to do everything I can to give her the best life imaginable.

So, we are walking and raising funds for this event in two weeks.

This is what I need advice on. Our fundraising goal is $2,000. We have been working since August toward this goal. We have sent out messages and actually made a lot of progress. We have raised over $1,600 at this point. That is amazing and I am so grateful to all of our donors. What I am angry about, furious in fact about, is that only $300 have come from our family members.

Yes, that's right. And actually, $200 of those $300 have come from Allison's grandparents. So, from all of my aunts, uncles, cousins, my stepmother and stepsister, and all of Jason's aunts, uncles, and cousins (a combined total of approximately 70 family members) they have donated a grand total of $100. That was two donations.

I am so incredibly pissed off about this. These folks are not poor people. They have received messages from me via email and/or facebook. They say things like "Let me know if there is anything I can do to help..." or "I could never do what you do..." They are people who have never been solicited by me for money for Rett Syndrome.

These people, who are supposed to love and care for us and Allison, can't even donate $5 or $10. These folks don't even reply to my emails or posts with a "Good luck" or a "We'll be thinking about you on the 30th".

Gee.. I don't know why this makes me so upset, other than I guess I feel like they just don't care. I am feeling so helpless, and all I want is to feel like Allison's family supports her.

Can I do anything? Send another email? Post something snarky on Facebook? I feel like telling them all to go to hell, but I'm sure that's not very productive.

What would you do? Should I just calm down and let it be?

Tuesday, August 10, 2010

Ups and Downs

Being Allison's mom, I am hypersensitive to so many things. As a result, I feel like I am constantly on this emotional roller coaster. We go for days, weeks, sometimes months where I am feeling really good about her. She seems to be doing really well and I am so happy with her progress. But that happiness is very delicate because it seems just one small thing can set me off and make me depressed and sad about her. I hate Rett Syndrome so much some days that I long for the days when I didn't know what Rett was.


This weekend I was on an upswing. Allison is finished with her VPK (pre-K) class now and is all set to begin kindergarten. We did some back to school shopping and I was feeling very excited about her going to real school. A big achievement for us actually happened while shopping at Tar.get. Allison is 5 now and getting too big to shove into the top of the shopping cart anymore. I have never felt comfortable with her riding in the main part of the cart, so up until recently I have been still pushing her legs through the holes and having her ride in the top. She is so hard to maneuver in and out, and she doesn't help by moving her legs. It is pretty much impossible to do alone. So, we have been trying to see how she would do just walking beside us in the store. That might not seem like much, but for us if she would do this consistently and without wondering off or grabbing at stuff on the shelves, this would be huge. Well, on Saturday, she did it. She followed my mom and I through the store and only had to be redirected a few times. It was great! No more shoving her into the cart. I can only hope that as she gets older it will get easier and easier.


So coming off of that, I was feeling very good! Then came school this week. Since Allison is done with her pre-K program, she is going to summer enrichment (day camp) for this week. It is a shorter day but I still wanted her to have something to do outside the home this week since she will be off all next week. When I got to her school today to drop her off, I find that she has been placed with the younger kids. She is in a room with 3-4 year olds, what the school calls older preschool, instead of with the other 5 year olds. She was just with the 5 year olds in her pre-K class, but now they have moved her down to be with the little kids. Honestly, being with the little kids might be the best place for her. However, I am really annoyed that no one at the school thought they should talk to me about this, especially since they are putting her in the mainstream kindergarten. I heard from another mom whose little boy likes Alli that they put her in with the little kids because she is needed more help than the other kids in the kindergarten class. That is probably true but I was really annoyed that I had to hear this from another mom! Why couldn't the school talk to me about this? Erg.

I guess part of it too is also my being worried that maybe she doesn't really belong in the mainstream kindergarten and I'm afraid that they are going to switch that at the last minute. I walked by the kindergarten day camp class today and it looked like the students were playing some kind of trivia game around the smart board. I know that Alli wouldn't have participated in that. So many emotions are competing in my head. I don't want to become one of those bossy moms who demand my special needs child be included in things that just aren't reasonable. I know what it's like to be on the school side of this and want to be understanding. I would just really have preferred some communication from the school rather than just feeling like she was singled out.

Tuesday, August 3, 2010

Not blending in anymore

Wow, it's been a while since I have posted here. It's definitely not because things have been slow around here, but maybe more because we've had so much happening with Allison that I'm not sure where to start.

Allison is about three weeks away from starting kindergarten. Wow. I am blown away by the fact that she is already starting "real" school. It has also been pretty emotional for me because, in a lot of ways, I feel like once she is in real school she will start to fall behind more and more from her classmates. In preschool, it doesn't really matter if you need help eating, or still wear diapers, or like to sit on someone's lap during circle time. It also doesn't really matter how different you are because the other students don't really see you as different, or if they do they don't care. In kindergarten the other kids will start reading and doing simple math. They will write their names, draw pictures, and do science experiments. Allison will be exposed to all of that, which I know is good for her because I believe she is really in there learning, but she won't be participating the way the other kids do. She can't or won't hold a pencil or fork. She doesn't talk. She won't respond to math problems or science experiments. But she'll listen and learn.

Thankfully her school is wonderful in that she can be in a regularly paced kindergarten classroom with typical kids. They have a low enough teacher-student ratio so she doesn't have to be pulled out into the special class. It's bittersweet because I know she is in the best possible place but I had always dreamed of her going to my school, which is kindergarten through 8th grade. I was so looking forward to seeing her in the halls, lined up with her class. I wanted to peek in on her during art or pop over to help in her room during planning. Oh well. I will get over it.

Also new for Allison are leg braces. She walks wonderfully for a girl with Rett Syndrome, but she does walk on her toes a lot. Toe-walking puts her at risk for muscle shortening which could cause her to lose her mobility over time. Even though she currently has full range of motion in her ankles the doctors want her to come down onto her heels. Therefore, she is getting leg braces. Thus the title of this post. Once she gets leg braces she's not going to "blend" anymore. Maybe she hasn't been blending in for a while, but I can pretend sometimes that when we're in the store and she's walking by my side that maybe people think she is just like any other kid. With leg braces, it will be apparent that she isn't. I'm not even sure if this bothers me, but it's still something I have been thinking about.

Lastly, we are trying a new medicine for Allison. She has been on it almost a week. It is a medicine for ADHD. Since Alli is in constant motion, the thought is that the medicine will slow her down and allow her to focus more, learn more, and become more cooperative with her teachers and therapists. The first day I gave it to her I was a nervous wreck all day. I felt like I was giving her speed or something! I had to have a drink that night just to calm down and go to bed. Of course, Alli did fine with it despite a lower then normal appetite, which is expected on those type of meds. As the days have passed she seems to be doing better about eating and is even napping again at school. At this point I can't say that the medicine is even helping her at all as she still seems to be her usual bundle of energy and motion. We are going to keep with it though, at least through the next month, to see if it helps her in her big kindergarten transition.

So that's the news about Allison in a nutshell. I have pictures I want to share from our summer vacation, and several more posts brewing in my head.

Thursday, April 8, 2010

Swimming fun

Getting a pool was the best purchase we have ever made. We bought an above-ground pool, which however redneck it felt to us at first has been amazing. It was such an impulse buy, too. We bought it based on cost, but now that we have it, I realized that it is the best choice for us because of Allison. With an above ground pool, I never have to worry about Allison falling in. She darts right to water if she sees it. So in the end, our little redneck pool has been perfect for us!

I posted before about how much Allison loves to swim. We decided tonight that since our pool was finally a decent swimming temperature (81 degrees) that J would take Alli in after dinner. She LOVED it. She jumped around and splashed, laughing the entire time. It was so great to watch her enjoy herself.

Here is a video I took tonight of her in the pool. Do you think she liked it?


video

Sunday, April 4, 2010

Spring Break

Allison and I just finished our week long spring break. Every time I am going to be home with Allison for extended periods, I must admit, I get a bit nervous. I wonder how I am going to fill the time in a meaningful way for her. I feel like when she is at school she is stimulated in a positive way for most of the day. She sees her therapists and she is learning new things.

At home, Allison's primary interest is television. She is totally fixated on it and pretty much watches it for most waking hours at home. This has been a big source of frustration for me. I never wanted to have my kids watch TV much at all and she would watch it for hours a day if I let her. She will not play with me, or tolerate me playing and her watching. She refuses help, runs away and whines if I try to read to her, pulls her hands away if I try to help her color or finger paint. After years of trying everything I could think of I have grown weary. I still try new things with her every so often, but for the most part, she has won. She watches TV a lot. J doesn't think it's a big deal saying that she works hard at school all day long with no TV. He thinks she deserves a break. He is right, but it still feels so wrong letting her veg out.

So when we are off together I go out of my way to plan things outside of the house to get her away from the TV. It might just be a trip to the mall or grocery store but for that time she is looking around and seemingly interested in other things. I talk to her and feel like we interact more than when we're at home. We actually had two really good days this break- a beach trip and a trip to a hotel with a heated pool. Swimming and the beach are two things that Allison adores. I took probably 150 pictures of her trying to get some good shots from the past week. Here are the best ones:

At the beach (looking quite grown up...)

Playing at the hotel pool

On Easter, looking thoughtful..

In the car (I would kill for eyes like hers)..

Completely passed out on a deck chair after swimming..


Here, at the end of my week, I feel silly for having so much anxiety about being off with her for a week. We really did a lot and had a good time. I had fun with her! It was easy to keep her busy and our TV time was somewhat limited. I don't know what I was so worried about!

Monday, March 22, 2010

School pictures are here!


My little girl looks so grown up! Sniff. I really look forward to school pictures every year. It's the one time when I'm sure to have a photo of Alli where she is actually looking at the camera. I also have another adorable picture of her in her cap and gown (for pre-K graduation). I would love to share that one but it is a class composite and I don't think it's fair for me to show the other kids.

(I have been a terrible blogger but I will definitely update soon. I have lots of Allison related news to share!)

Friday, February 5, 2010

Just a few pictures I wanted to share..

This is Allison in her shower cap. It's the cutest thing ever. I started making her wear it so I didn't have to wash her hair every night. She gets so excited in the tub that her splashes make a big mess!

Alli got a new booster seat a few weeks ago. This one is rated up to 50 lbs with the chest harness which makes me happy. I wasn't ready to let her go to just a seat belt. She is way to wiggly!


Today was picture day at school. She wore her hair in pig tails and a pretty flowered shirt I bought her with her Christmas gift cards. They do such a good job with her every year that her pictures turn out great. Here is last year's...

I am really hopeful that this year's turns out as good! I have to wait until the middle of March for them to be delivered, and since I spent $50 on them I'm hoping that they are worth it!

Tuesday, January 26, 2010

Proud mama

It's not often I have something to be really proud of when it comes to Allison's school performance. She doesn't really participate in many of the activities but we have always thought that her just being in the school environment is good for her. She might not speak, but I'm sure that she listens. Last night I got this email from her teacher. I thought it was cute and it really made me smile.

"I just wanted to share a cute story about Ally from today. After rest time we were at circle time discussing birds. Ally was doing her usual wandering around the classroom coming in and out of circle time and listening from afar. We were watching a short video clip and it had information on bald eagles nests and it talked about how over time, they are so heavy they collapse. I gave the definition of "collapse" to the kids since it's a new word for them and then I gave a demonstration and pretended to collapse. All the kids wanted to try and took turns "collapsing". After all the kids had a turn I yelled for Ally to come over (she was on the other side of the room). I said "Ally come over and show us how you collapse". She turned around, walked over to circle time and collapsed!!! I really think she knew exactly what she was doing because that's not something she usually just does. When she comes to circle time she either sits down or goes down on her knees. It was the cutest thing ever and I wish I got that one on video tape. I know sometimes her therapist wants to make sure that she is always sitting with us, even though she doesn't like it, but it makes me feel really good to know that she is still getting all the information from wherever she is in the classroom:)"

Sunday, January 24, 2010

It's silly, but..

I get jealous when J plays with other children. Jealous of what, I'm not sure exactly. I think I'm jealous for Allison.

Tonight the neighbors came over and had dinner with us. It was a crazy chaotic night. The kids are pretty wild and were running around jumping on our furniture and being loud. I have a pounding headache now that probably isn't helped by the fact that I had two glasses of champagne with dinner. They have been gone about 20 minutes but I'm still totally tense now.

The neighbors have two kids, 5 and 18 months. The little one is a boy. J played with him on and off all night. They were high fiving, wrestling, tickling, you name it. I like that he is so good with kids- I really do. But I get so sad and jealous watching him enjoy someone else's children while Allison just watches TV and tunes the rest of us out for the most part. I also know J wants a son and he doesn't have one. That might be part of my sadness, too.

Allison does have her playful moments, but nothing like this. It probably shouldn't bother me, but it does. :(

Monday, January 18, 2010

Saving for the future

When Allison was a little over a year old, J and I decided to enroll her in the Florida prepaid college program. Wanting to be smart about saving for her future, we chose a plan that will lock in the tuition rate at current prices and cover her for 4 years of school and a year in the dorms at a state university. It was the smart thing to do for our perfect little girl who was growing and developing as she should.

To this day, she is still enrolled in the plan. Every month the bill comes in and we diligently pay it. However, that envelope never makes me happy when it's in the mail box. J and I have never really talked about the fact that we're paying for something that she may never use.

Yesterday I got our year end statement in the mail. We have paid almost 25% of her tuition. That's almost a full year of college for her that has been paid. If things were different I would be beaming with pride and imaging her as a young adult attending classes and living the college lifestyle. Instead, for the first time, I flipped through the enclosed brochure to see what the refund/cancellation policies are.

If we cancel the policy due to disability, they will give us a full refund minus small processing fee. Maybe it's weird but I don't think I'm ready yet to cancel. I think if I cancel I will feel like I'm giving up on her. That I'm giving up on a cure or treatment that could change everything. After all, she's only 4. Who knows what advances are just around the corner?

I'm not even sure if I want to talk about what I've discovered with J since he pays the bill every month without asking me what we should do about it. He's probably in the same place that I am but I don't want to risk that he might feel differently and want to cancel now and pocket the refund.

Hopefully we will have another child. When that happens, I could possibly cancel her policy and use the lump sum to open a new account for the other child. That way it is still college savings we have been paying for, just maybe for someone else. But that feels weird also to be honest, like I'd be giving another child something that belongs to Allison.

I think I'm going to put my head back in the sand a little longer on this issue. Over time, I think we'll figure out what we're going to do and hopefully then it will feel like the right decision.

Sunday, January 17, 2010

H1N1?

Whatever happened to H1N1? I guess it's still out there but the news on it is basically nonexistent. I wonder if it has really subsided in numbers or if it has just been overshadowed by other news.

Our Walgreens now has the H1N1 vaccine shots. I am toying with the idea of getting one for Allison. I didn't do it before because I kept putting it off, waiting to hear more news about it to see if it was safe.

I'm still not really sure what I want to do. Obviously I don't want me or her to get swine flu, but if it's not really a threat anymore do I want to expose her to a vaccination and possible side effects? I'm not usually weird about vaccinations but for some reason this whole H1N1 thing has me weirded out.

I guess it's time to do some more research.

***Update***
I have done my research. I think I'll be trying to get us our shots this week. Look at what I found on the International Rett Syndrome Foundation website in their H1N1 section:

Is my daughter with Rett syndrome at higher risk for complications?

Individuals with disorders that can compromise respiratory function or the handling of respiratory secretions or that can increase the risk for aspiration (e.g., cognitive dysfunction, spinal cord injuries, seizure disorders, or other neuromuscular disorders) are considered to be at a higher risk for complications. The Center for Disease Control and Prevention (CDC) in Atlanta reports that 477 people in the US have died from H1N1 influenza (flu), including 36 children, as of August 8th, 2009. Nearly 70 percent of these children had chronic high-risk medical conditions such as epilepsy, cerebral palsy or developmental delay, according to data published in the September 4, 2009 edition of MMWR News (http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5834a1.htm).

Okay, so ~that~ freaks me out. If 70% of kids who have died from H1N1 meet those criteria, we are getting that shot. Rett is definitely similar to CP, involves seizures, and causes developmental delays so it's pretty much related to all three of those categories. Yikes.

Monday, January 11, 2010

I've got skills

Add another talent to my resume: Vomit catcher.

No, she's not sick. She just gagged on a banana.

Sunday, January 10, 2010

Rett Clinic

Allison participates in the Rett Syndrome Natural History Study. The study is designed to follow the progress of girls with RS to document how the genetics affect symptoms, progress, and development. The hope also is to lay the foundation for clinical trials of future treatments. We meet with the research team every six months and this time it was in Tampa.

Saturday morning we loaded up the car at 6:45 to begin the long drive over to Tampa. It was dark and about 30 degrees and raining when we left the house which was not fun at all. Despite missing our exit on the interstate two times we were able to get there in time for our first appointment.

Allison's geneticist is from South Carolina and he is one of the principal investigators of the study. We met with him and his nurse first. They ask us a billion questions about her and interact with her, watching her responses. They perform a neurological exam on her, and then they measure her hands, feet, head, and do a basic physical exam. We then have the opportunity to ask about any questions that we have. We usually ask them about their research and if they have any updates on developing treatments, etc. I am always super tempted to ask them how they think she is doing or if they think she will continue to progress, etc. The hard part here is that they can never really answer us and have to be vague because the truth is that there is no predicting how Allison will grow and develop over the next few years. She is doing great now and making progress but that could change over night.

Her second appointment was with the dietitian and measurement people. The dietitian usually asks us about her eating habits and what foods/drinks she prefers. The measurement lady literally measures every part of her- almost all bone lengths, width of her arms, legs, and does skin fold measurements. She weighed in at 39.2 lbs and is 42.5 inches tall. When they plotted this on the growth curve it had her at the 50th percentile for height and weight compared to normal 4 year olds. This is fantastic news! Girls with RS are prone to growth failure and they drop off the growth curve starting around 3-4 years of age. In fact we have met many girls with RS who appear to be like 7 or 8 years old but are in fact in their early teen years. Allison's growth is a great sign that she will continue to keep her physical skills in place which in turn mean that her GI and orthopedic issues will also be minimized.

Allison's last appointment of the day was with a communication device specialist. We often say the the biggest disability Allison has is her inability to speak or communicate meaningfully. The device we looked at uses eye gaze to run an elaborate communication board. Girls with RS often don't have the motor skills to sign or type so eye gaze is how most eventually learn to communicate meaningfully. Allison wouldn't sit still long enough to try it out (she was exhausted after the first two appointments) but I used it. It was super cool! I could run the machine using just my eyes. Lingering on certain parts of the screen allowed other menus to open and I could have done all sorts of applications that ranged from extremely basic to very sophisticated. Right now, honestly, Allison is no where near being ready to use a device like this. She does not have the patience or the need. She gets what she wants just by vocalizing or banging on things. What the appointment did do, however, was allow us to see the variety of communication options that will be out there for her when she is older and ready or interested to use them.

The clinic provides lunch for the families and we spent the last part of our day eating and socializing. There were probably 30+ other families there with girls ranging from 2 to the mid 30's. It is often overwhelming for us to see the broad spectrum of symptoms the girls exhibit, most generally much more severe than Allison. I always feel a strange sense of calm and understanding when I am around other RS families. I could just be with them all day absorbing information, advice, and sharing stories. Despite the day being somewhat emotional, I left with a unique sense of hope and excitement about the future. This is a huge improvement over the past, where I have left fearful and afraid of what is to come for Allison. She continues to amaze me with her spirit and progress.

Saturday, January 2, 2010

Baby it's cold outside...

We shopped today at the Outlet Mall. It was cold and windy by Florida standards. Here are some shots of Allison in her hood.


Friday, January 1, 2010

Alternate universe

Last night to celebrate New Year's Eve, J and I went out for dinner before heading to a party. My mother graciously agreed to let Allison spend the night at her house so we could go out.

While at dinner there was another family just like ours sitting a few tables away. There was a mom, a dad, and a little girl who was probably around 4 or 5 years old. She was surrounded with stuffed animals and other little girl accessories that she had brought to entertain herself with. We occasionally could hear little tid bits of her conversation with her parents. She was well-behaved for the most part with a few little stints of being out of her chair and being reminded of her manners, etc.

As we were eating I was watching their family from afar and sort of imagining what life could have been like for us if things were different. For the most part, we don't take Allison out to eat with us. We used to and my desire was to continue to do so. She just has seemed to get more and more difficult in public at restaurants over the past few years. She no longer fits in high chairs, but booster seats don't have straps and/or are too small for her. She doesn't want to stay sitting in a chair or booth and having her on my lap is dysfunctional. In addition, she has no patience when she's hungry and just can not stand having to wait for her food.

For a brief moment last night I imagined what it would be like if Allison could be out to dinner with us like the other little girl with her family- if she could sit in her chair, feed herself, and entertain us with her conversation. Her parents looked a little bored and like they maybe couldn't get a sitter.

How ironic is it that they were probably wishing they could be out alone on a date like we were and we were wishing that we could have our little girl with us carrying on and disrupting our dinner out.