Archive for the ‘Jenn Kubicza’ Category
Friday, February 15th, 2013
February 15th is the first ever International Angelman Syndrome Day. Aside from possibly hearing it from me, I bet you have never heard of Angelman Syndrome before. I had never heard of it before. It’s pretty uncommon. Only 1 in 15,000 people have it. One of those people is my son, Cole.
We did not know he had it during my pregnancy, nor did we know when he was born. We didn’t even know he had it when he turned one… or even two.
It took us two-and-a-half years to find out that my son Cole had a deletion on his 15th chromosome. This deletion was actually on the maternal side of the 15th chromosome, giving Cole Angelman Syndrome. If it had been on the paternal side, it would have been an entirely different syndrome – Prader-Willi Syndrome. This specific deletion contains an important gene that would normally aid in brain function. This is the reason that people with Angelman Syndrome have symptoms like seizures, developmental delay, and complex communication needs.
Not everything about Angelman Syndrome creates a struggle for Cole, though. When Cole was an infant, he only hit one milestone on time. It was smiling. Cole, and other people with Angelman Syndrome, are typically VERY happy people. They are constantly laughing and smiling. They are also very social and make wonderful friends.
Cole is making great progress, though. He just started to walk only holding on to one finger for help! He’s eating with a fork – as long as you put the food on it for him, and he’s starting to wave. He is a complete joy.
The good news is that there are already clinical trials happening for a therapeutic cure. In fact, the Foundation for Angelman Syndrome Therapeutics is wrapping up the first clinical trial this month. That means it is possible, within the next few years, my son may have the opportunity to talk. I just may have the opportunity to hear him say, “I love you, Mom.”
Jenn Kubicza is a mom of two little boys, one of whom has a neuro-genetic disorder called Angelman’s Syndrome and will require extended diapering.
Tags: angelman syndrome, caring for children with disabilities, cloth diapering, cloth diapers, extended diapering, FuzziBunz, fuzzibunz cloth diapers, international angelman syndrome day, potty training
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Wednesday, January 23rd, 2013
Being a working mom of two, it is necessary my boys go to daycare. I work a split shift from home for a large company, so I am able to be home with them from 12:30 until they go to bed around 7:30 pm. After they’re asleep, I finish my shift. Because of this, I only need 13 hours a week for daycare, which is great. I have a lot of time with my boys and still get to work full-time. However, I didn’t want to give up my cloth diapers because my boys were in daycare.
I did a lot of research on health codes and asked a lot of advice from my cloth diaper community. I wanted to be sure I had all my information ready. At the time we decided to start, I had two in diapers and the boys were going through at least three diapers a session at daycare – if not more. I knew it was going to be a lot more “wallet-friendly” to have the boys in cloth during their daycare time as well as at home. The cost of daycare for two boys is expensive enough! Our daycare was very accepting of our choice, which made the process a lot easier for us. I am pretty sure we were the first family at our daycare to try this out.
It was determined that (in the state of Connecticut, at least) the soiled diapers needed to be placed in a sealed container, which was to be taken home each night and cleaned for use the next day. For this, we used a shoebox-sized plastic bin from the storage container section of our local “super-store”. This size bin nicely held three cloth diapers, which was typically perfect. We did keep a few disposable diapers on hand at the daycare in case there were a few extra “stinky” ones which required more than three diapers in one day.
My biggest concern was the use of diaper cream. Prior to cloth, diaper cream was applied regularly at daycare, providing we had given permission. Obviously, diaper cream is not to be used with cloth diapers, but I came up with a solution. I only asked that that it be used if he had some redness. Cole especially has really sensitive skin, so we do periodically coat him with a little cream on occasion to keep any skin irritation away. I purchased flushable liners to be used at daycare and bought a cloth diaper-friendly cream just in case some accidentally got on the diapers. The flushable liners also helped with the poop diapers, too, since it make it easier to dump in the toilet.
I came in and demonstrated the diapers, which I pre-stuffed for the staff every day. This way, they were able to ask me questions and be comfortable with using them. I think some of the staff was pretty surprised as to how easy they were. Over the last two years or so, cloth diapering at daycare has gone smoothly.
 - Cole on his birthday.
On January 5th of this year, Cole turned three years old. A few days after his birthday, he actually transitioned out of daycare and the early intervention program (an at home program for kids with delays or special needs) and into the public school system. He now attends a 3-5 year old program through our local kindergarten that is for children with special needs and “typical” peers. At first, I was afraid we would have to go to disposable diapers. I actually was a little nervous to bring it up with all of the formal meetings. When we starting visiting the classroom, I decided to give it a go and ask. What was the worst that could happen? They say no? So I asked. At first, they said we would have to buy disposables for school, but after I showed them the diapers and how similar they are to a disposable diaper, they agreed to give it a go! And so far, it seems to also be going well!
I know some people decide not to cloth diaper because they send their kids to daycare. I can tell you that with the right center, and the right research, you can successfully cloth diaper and have child care!
Jenn Kubicza is a mom of two little boys, one of whom has a neuro-genetic disorder called Angelman’s Syndrome and will require extended diapering.
Tags: caring for FuzziBunz diapers, child care, cloth diaper, cloth diaper benefits, cloth diapering, cloth diapering at daycare, cloth diapers, daycare, easy, eco-friendly, eco-friendly diapers, fashionable diapers, FuzziBunz diapers, sahm, save money with cloth diapers, school, wahm, working dads, working moms, working parents
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Monday, January 21st, 2013
I just can’t believe that my youngest is three! Where did the last three years go? He has come so far in these three short years and we are so proud of him.
By three years old, a lot of kids are potty trained or are starting that journey. I have yet to decide, when, exactly to approach this with Cole. My first was potty trained at 3, on the dot. He was the easiest kid to potty train (maybe because I just waited until he was ready). He asked for big-boy underwear and we went with it. He had about three day’s worth of accidents during the day, and about two week’s worth of accidents at night. But, after those two weeks, my little boy was completely out of diapers! He is four now, and has not had one accident since (aside from the occasional “bad aim” when using the toilet).
The “easy” potty training experience will not be the same for Cole. I don’t even know for certain that Cole will ever fully potty train, but I am willing to give him the opportunity to try. In fact, back in the beginning of December, I was able to get Cole to use the potty a good handful of times. We’ve backed off a little, because with Cole, everything is on “Cole’s terms.” We don’t want to get him frustrated, so when he starts showing us that he’s not happy with what is going on, we back off a little and try again later.
I find that method of backing off also worked well with my oldest when we started the potty training experience with him. We had initially thought we could do a “boot camp” type method with him when he was a little over two years old. When it didn’t go well after the first day, we backed off. It didn’t make sense for him to get frustrated and not want to do it. We wouldn’t get anywhere by doing that.
Whenever Cole is ready, we are planning on using an “elimination communication” approach with him at first. This approach is often used with infants, but because Cole has complex communication needs and can’t really let us know he has to go, it may be just the place to start with him, too. Essentially, it means we will watch for signs that he has to go and make every effort to sit him on the toilet. My plan is that once he begins to have success and can get a good understanding of what it going on, we can them move more toward the “typical” potty training approach. I already know what rewards I’m going to use with Cole… empty plastic water bottles and a bowl full of water – two of Cole’s favorite things! (Probably slightly different than your three year old’s favorite things… but hey, if it works, it works!)
For now, I get to enjoy my fluff a little bit longer… and maybe the fact that I don’t have to buy disposables for these extra years will make it a little sweeter to have a preschooler still in diapers.
Jenn Kubicza is a mom of two little boys, one of whom has a neuro-genetic disorder called Angelman’s Syndrome and will require extended diapering.
Tags: cloth diaper, cloth diaper benefits, cloth diapering, FuzziBunz, fuzzibunz cloth diapers, FuzziBunz diapers, potty training, reusable diapers, save money with cloth diapers
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Tuesday, December 18th, 2012
A few weeks ago, my husband and I attended a conference and gala for the Foundation for Angelman Syndrome Theraputics (FAST). This was our first year attending since my son, Cole, was diagnosed with Angelman Syndrome back in June. It was completely amazing. We met so many people in the same situation as us. Just about every person in that room had a child, grandchild, niece, nephew, or someone they knew with Angelman Syndrome. It really made my husband and I feel comfortable knowing how much we all really did have in common, despite coming from all over the world. We felt like part of a community.
I think that we can all relate to that sense of community. Communities can involve anyone and anything. In the cloth diaper world, we have our own community. We go to websites, blogs, message boards, and groups to talk about all of our fluff! We can get answers to questions about which is the best laundry detergent or reach out for support when our 1 year olds start figuring out how to take off their diapers. You may have a local diaper swap in your area where you meet up with other parents who share the same love in cloth as you. This community makes us feel like we’re a part of something big.
These communities help us sort through our problems and are there to give us a “wahoo” when something goes right. I had never really looked at the people in my life this way until Cole was diagnosed and I was not sure where to go.
The day we were diagnosed, I updated my status on Facebook to announce the news. Not only did I receive an outpouring of support from my “friend” community, I also received contacts of people my friends knew who also had children with the same syndrome as Cole. I was able to get in touch with one of these contacts and she was able to put me into a group that has been a life line for us. We were able to finally meet a lot of these people in that online community when we attended the gala.
I must say that I feel very fortunate to be part of that Angelman Community. Even though the reason we’re a community isn’t ideal, it is a very special group of people. Each member of the community is there for each of our children. If you post a question on Facebook , within minutes there is a response. And then another. And another. Every person in our community cares about everyone else’s journey. We’re in this together. The chairperson of FAST mentioned this at the gala and it brought tears to my eyes.
I hope that everyone has a community they can turn to.
Jenn Kubicza is a mom of two little boys, one of whom has a neuro-genetic disorder called Angelman’s Syndrome and will require extended diapering.
Tags: angelman syndrome, cloth diapers, community, diapering, FuzziBunz diapers, groups, help, parenting, support
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Wednesday, December 5th, 2012
BY JENN KUBICZA
The weekend before Halloween, we left our first-ever home. Moving has been more of an adventure than I had ever expected it to be.
Last year when our youngest, Cole, began having seizures and got the diagnosis of Angelman Syndrome, my husband and I really stopped to think about the future. We had always known we wanted to have children, and when we bought our first home we did pick a town with a good school system. We didn’t know that we’d really need to be looking for a town with a good special education program. We did some research and talked to families in town and in surrounding towns and decided that, in our opinion, it was best for Cole to get into the program one town over … and we had to do it before he turned 3, so he could start with preschool.
And so it began. We put our little two-bedroom townhouse on the market back in April. We had quite a few showings before someone FINALLY put a realistic offer in. Ironically, it was the day we came home from one of our short hospital stays with our son and the house was in NO condition for a showing! During this whole process we had been talking to the boys about the move. We had even taken them to see a bunch of houses with us to include them in the process. I believe this really helped my oldest, Lincoln, understand what is going on.
But, we had run into one problem. Unfortunately, we have yet to find our new house. Seeing that we have such a specific school district we’re looking for, and such a specific price range, our options are very limited. We continue our search, but for now, are living with my husband’s parents, whose home is (thankfully) in the school district we need.
“The Move – Part 1,” as I have called it, has taught us a few valuable lessons that we will indeed be putting into action when we are ready for “The Move – Part 2.”
1) Moving with children takes a lot more planning than we anticipated.
The last time we moved it was out of our parents’ houses and into our own home. We did it at our leisure! This time…we had more of a deadline, but we also had lots of “Mom!!!! Can you help me with this?” and “Dad!!!!! I need you to fix this!” going on while we were trying to pack. We also had lots of “Oh, Mom/Dad!!! You found my [insert old toy that I was going to donate here] …” So things were not getting packed nearly as quickly as I had hoped.
The moral of this story is to pack the toys AFTER the kids go to bed…or hire a sitter!!! (Note: I will say my 4 year old did try to be helpful!)
2) A good thing to do is wash your entire cloth-diaper stash BEFORE you pack up your washer and dryer.
Turns out it’s not really useful to have your washer and dryer packed up early. We ended up having to do two days of disposables because I wasn’t thinking ahead much. We ran out of clean diapers.
3) Accept help.
We actually believed that we could move our entire house by ourselves in one day. Obviously, that was way too ambitious. It is pretty much impossible to finish packing, load a moving truck and unpack it (three times) within eight hours. We really did think we could do it … but, it turns out that we really needed help (which we thankfully did get) and it took us about two days to get it all completely done. We learned that doing ALL the packing ahead of time is helpful… and getting as many extra hands as you can get!
4) If you think you have enough boxes, buy at least 20 more.
We aimed to use as many “reusable” packing materials as possible, so we kept an eye on the local ads and opted to get a bunch of the plastic totes. We decided this would be beneficial for us because we will need to store old kids’ clothes and toys eventually, and it would make less waste. Well, we needed a lot more than what we bought. We had to go to the hardware store and buy cardboard boxes twice before we were actually done.
We had no idea that four people living in a two-bedroom townhouse could actually fill an entire 10 x 20 storage unit…plus a few more square feet in each of our parents’ garages. This lesson won’t have to be used next time since 90% of our stuff is already packed up … thankfully!!!
Jenn Kubicza is a mom of two little boys, one of whom has a neuro-genetic disorder called Angelman’s Syndrome and will require extended diapering.
Tags: cloth diapering special needs, cloth diapers, jenn kubciza, moving with babies, moving with babies in cloth diapers, moving with kids, special needs children
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Wednesday, November 14th, 2012
BY JENN KUBICZA
Halloween has passed, but pumpkins are still very much in season! This is a picture of our pumpkins from this year. We painted them purple as a part of the Purple Pumpkin Project to raise awareness for epilepsy during November, National Epilepsy Awareness Month. Epilepsy is a seizure disorder and is a huge part of my son’s condition, Angelman Sydnrome.
Did you know that about 1 in 10 people have a seizure in their life time? Did you know there are many different kids of seizures? Seizure activity can range from loss of consciousness and lots of muscle contractions (tonic-clonic seizures) to subtle staring episodes (absence seizures). Would you know what to do if you witnessed someone having a seizure?
Thankfully, when my son had his first seizure, I was prepared from some emergency training I’d had for an old job and was able to stay calm. Cole’s seizures began before we knew he had Angelman Syndrome, so when his seizure happened, the doctors were saying it was just due to a high fever (this is known as a “febrile seizure,” is very common in children and usually no cause for concern).
When Cole had a second seizure in the Emergency Room, they knew that this was more than just a febrile seizure. Cole was then diagnosed with epilepsy, which ultimately led us to our diagnosis of Angelman Syndrome.
Here are a few things to remember in case you ever witness someone having a seizure:
They can NOT swallow their tongue. This is a myth! It is, however, important to lay them on their side if possible. This will allow for easier breathing, keeping airways clear.
Remain calm! Most seizures only last a minute or two, and when the seizure ends the person may be confused and cloudy. Be comforting, as it can be just as scary for them.
Don’t try to hold them down. This can cause injury to the individual. If possible, you can place a soft pillow or something similar under their head to avoid a head injury.
For more information on Epilepsy, you can visit www.epilepsyfoundation.org
Jenn Kubicza is a mom of two little boys, one of whom has a neuro-genetic disorder called Angelman’s Syndrome and will require extended diapering.
Tags: angelman's syndrom, cloth diapering for special needs kids, epilepsy, fuzzibunz cloth diapers, jenn kubicza, national epilepsy awareness month, purple pumpkin project
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