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Looking back through my life I am learning

I just left my second longest job.

2 1/2 years and I left.

I enjoyed working there and I’ll miss my coworkers, but I needed to move on.

As I’ve been applying for jobs and working on leaving my comfort zone, I have had some job apps asking for my full employment history. It had me going through and recounting and made me realize something. I have burned out on nearly everything but two stay in my mind.

Skincare and writing. My first job was in high school. It was my longest running job and only ended because I went to college. It gave me a firm love of writing articles. I loved pitching, researching, interviewing and writing. I loved taking the pictures for the articles and attending the meetings. I loved everything about it.

Back in 2011, I was looking at a website devoted to 30 day challenges where I ran across NANOWRIMO which quickly became my favorite month. It gave me a fierce obsession with writing and as soon as I finished the rough draft of my first, inspiration quickly hit me and I started a new draft. Then another.

The first was my first win and so far, only, but I have planned and started yearly since. This year will be my 7th year doing it and will be my second win. I have a finished rough draft of a short story from a few years ago and am planning the next several in the series. Once I get all 7 finished, I’m planning on publishing the full short story series and releasing it.

I read a lot about finding and following your passion and finally realized I found mine a long time ago. I’m a big advocate of following your passion, I guess now is a better time than never for me to listen to myself.

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Right now until the end of this month

40% off all readings at

https://www.etsy.com/shop/newagedreamchick

Also- free tarot for any astrological reading (equal or lesser value- message me in the store for the free reading)

And use coupon code FREESHIPHOLIDAY

At https://www.etsy.com/shop/bethcessoriesdesign

For free shipping

Both end at the end of this month

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How to Raise A Life Long Learner

Fostering a strong love of reading and learning starts before you even give birth. It’s known that baby can hear you talk before they’re even born, so reading to them while you’re still pregnant gives them the comfort of hearing your voice and their first stories. As children reach toddlerhood, it will get more challenging. As a baby, you’re able to sit them down on your lap and read full books. When they get older, they start to flip pages and yank the book out of your hand. It’s important to continue reading to them

From day one, babies are fascinated by life in general. Everything they see is brand new. It may seem mundane to us, since we see those objects all the time, but to an infant, it’s all brand new and needs to be explored. From the youngest age, infants start exploring by putting objects in their mouths. As they get older, the way they learn changes and as they learn to talk they will start asking questions about everything. The best way to encourage them to learn is to answer their questions, encourage exploration, take them out to show them different things and find fun ways to teach them about every day life. Silly songs, fun games, nursery rhymes and even good educational TV shows are all good ways to get your child interested. As they get older, there will be topics they are more interested in than others- make sure to take notice and gently push them towards gaining as much knowledge as they can on those 1-2 subjects. At a very young age, their brains are sponges. It’s the best time to teach them second (and even third) languages. Teach them multiple languages for basic words. Learning is great and it goes further than a classroom. Take young nature lovers on hikes, trails, to the park and to local landmarks. Take them on tours of various caves, caverns and other “field trips.” Make sure they know that life is an adventure, it’s a constant learning experience.

No matter how crazy an interest seems to you, or how mundane, build it up. If they are interested in the strange, paranormal or mystical help them make a collage to show different mythical beasts. There are books about cryptozoology creatures (some of whom have been proven to have actually existed). Take them on a hike through the woods. Take pictures of some of the bugs, reptiles, animals and plants- then go home and print the pictures. Look up any you don’t recognize and create a collage or a small book and have older kids write the names and descriptions. You could even let your child make a presentation on the solar system if they’re interested in space. Remember, the skies the limit with what they can do and the more you encourage, the more interest they will build with exploring and the more they can start to think creatively.

 

I have spent the last 30 years fascinated by life. If I could, I would happily live in school. I love everything about it. From the time I was four, I started reading. By first grade, I was reading at an advanced reading level and was reading everything I could get my hands on. I was that child getting in trouble for reading during class and reading ahead of the class. My friends and I did more than play “house.” We played ghost hunters, we set “traps” to catch evidence of animals (I remember setting up some string, dirt and a carrot to “catch” a rabbit), we played investigators- there was never a dull moment when my friends and I got together. Even now, I write all the time. As a child, I had a huge folder filled with poetry and now I have a whole virtual folder with fantasy drafts. My mom fostered a true love of learning in me and I developed the creative side of my brain naturally. I see it in both my kids now. My seven year old loves reading, books and nature. My two year old is already a story teller with a very strong imagination. We take them to the library weekly- last year, my seven year old won a giant stuffed Macie Mouse with a book.

Tips to Instill a Constant Love of Learning and Natural Curiosity

  • By far, the worst thing you can do is silence your child. By silencing your child when they ask (what may seem like endless) questions, you are teaching them to blindly accept and not look further. You need to be able to explain to best of your knowledge (and to their developmental ability).
  • If you don’t know, give them the resources to look the answer up themselves. If they ask you “why” and you don’t know why, look it up with them. Don’t just dismiss their questioning.
  • Make sure they have an endless supply of books- all different topics to read at any point and never get mad at them for wanting to read. If you don’t have the budget to buy every book, take them to the library regularly and let them research all interesting topics on Google.
  • Begin very early by reading daily to your child- even when your toddler grabs the book out of your hand, try to finish by making up the rest of the story.
  • Take them out on nature hikes, through the woods, to playgrounds and parks and just out in the back yard
  • Take up small hobbies to teach them about the world around them- making up little stories or songs, photography, even researching can be a fulfilling hobby.
  • Teach them to craft- there are sewing machines made specifically for children, teach them to knit or crochet, make jewelry, teach them to cook or bake then help them make up their own recipes- there are tons of options to inspire creativity and the more they find enjoyable, the more they will love to learn.
  • In good weather, take lots of pictures then look up everything you took pictures of and read as much as you can about everything.
  • The best way to teach them, is by example. Let them see you studying, researching, writing or doing other hobbies or crafts. Let them help you in the kitchen. Show them how much fun learning and creating is.
  • Start them young by reading and singing to them daily and as they get older, have them join in and have them to read to you or make games out of making up the silliest song.
  • Make sure they go to school on time and have all the supplies they need. Even though school is only one way of learning, it is still vital- they are there most of the day during the school year.

Teenagers are a bit trickier. They are often pushed for perfection- perfect grades, athletic abilities or test scores. By high school, school starts to feel like work. The best way you can keep encouraging is by not putting a lot of pressure on them for perfect grades. If their test scores aren’t 100s, don’t stress them same with athletics- if they don’t make the winning shot for their team, don’t get mad. Remember, life is a teaching experience. They are most likely on a sports team because they love the sport, in musical theater because they love performing- not because they are trying to be perfect and seeking perfection is the number one way to burn out.

What Can I Do Today?

One of the first things you can do, is turn off all electronics for a set time daily and go out and play. Even your own electronics- go and play pretend with your toddler, go on a hike with your elementary aged child. Collect costumes and create a costume closet so when your kids play pretend, they can ake believe in costume as well. It doesn’t matter how small or how big it is, get out and start encouraging your child. Show them new ways of doing things (if you can’t think of anything, research it first).

 

Sit down tonight and write your kids’ names out. Under their names, write what they’re good at, their strengths and weaknesses and what their interests are. Then look at all the interests and list five different ways to encourage those interests, build up the strengths and either strengthen or hide the weaknesses. After you have those figured out, start introducing those to your kids in fun ways. Above all, remember to make learning an adventure and life fun.

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Physical Attraction Vs Attraction (part 1 of the series)

I was reading an article saying that no one wants to admit to being unattractive so that makes it harder to fight bias.

Conventional attractiveness has different definitions in different countries and cultures, but not everyone can fit that definition. If people can’t all fit, that means there is a group of people out there who are not attractive. There are also people who don’t care about attractiveness so they have no issues with saying they aren’t attractive- but when someone says that aloud, they get jumped on and corrected.

If you had to choose between intelligence or attractiveness- which would you choose? Same with attractiveness and personality?

They aren’t exclusive- you can easily be all three, but how important is being conventionally attractive in the grand scheme of things? If you’re a model or a related career, it will matter- but it will be short lived since they always want young. After that, how are you going to use your looks? Are you going to spend millions on surgery to upkeep? Would you need to spend millions in order to continue being attractive to your partner?

Most people age- and with aging comes losing that attractiveness so if your only focus is on your appearance, it will do you no good. Most people who grow up less than attractive have to make it up in other areas- intelligence, personality, sense of humor. I am not saying you cannot have a great personality and be attractive, but over compensating does make those traits stand out more.

I did an informal survey of my friends on Facebook and overwhelmingly, personality and intelligence beat physical attraction (intelligence was 100% and personality was all but 1)

Is attractiveness purely physical?

When the attraction stops at physical, it gets boring. If you have no common interests, they have no interests or redeeming personality traits- the attraction will wane. It’s said we are attracted to more than physical- confidence, personality and holding interesting conversations are all parts of why we are attracted to who we are. There are also biological () that attract us to certain people we are biologically compatible with- for primal reproductive reasons. It’s similar to why wide hips and larger breasts are seen as attractive- the breasts nourish newborn babies and hips are an indication of reproductive abilities/fertility and health. Men are naturally born to be protectors and women are drawn to more fit men (biologically) because they are seen as able to protect. Of course, there are men who are skinnier and women who are not built in the biologically attractive way and they still find love. It may be that since we no longer need to produce offspring like we used to, those tendencies are starting to evolve and we aren’t following those instincts any more (plus, we can reason much more than animals) (the evolving thing is MY theory, not a fact I read anywhere)

Is “Conventional Attractiveness” truly ideal?

Conventional is pretty much different in all cultures- in the US culture it’s seen as tanned, blonde, long legs, skinny and tall- think nearly any model but what about people of other races? They can dye their hair blonde, but some seem to hold fat in different places. I was reading about how it’s unfair to other races to use those standards- and it’s not but it’s also pointless. Those standards may or may not even be wanted when it comes to long term relationships. Most models aren’t naturally like that, that’s why they look so sick. I was studying up on the fashion industry and they said they don’t even choose attractive models because models are walking hangers- they want the model to be plain so the clothes stand out. The models themselves follow strict workout routines as well as different methods of starvation (including the cotton ball diet- one of the more disturbing trends) but the sizes they are are hardly healthy.

The hourglass shape tends to be the most wanted- slim waist, curvy hips and breasts and smaller stomach. There is also a method that was developed that rates attractiveness of the face by symmetry.

There may be theories to the science behind what makes people attractive physically, but there will always be personal preference and chemistry in other ways- it’s all subjective.

 

This is only number 1 in my attraction mini-series. I’ll be posting more

 

 

 

 

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Things I Wish I Knew When I Was Pregnant

I have had a total of three pregnancies- my first ended at 28 weeks with a partial abruption and severe pre-eclampisa. She was only 1lb 11.5ozs and 13 inches long and spent a total of 8 1/2 months in NICU. She’s now a small but healthy 7 year old. My second was relatively uncomplicated but we lost her. She was born at 36 weeks due to me going into a painless labor and I wasn’t allowed by the doctors to go into labor. She died of a condition called Anencephaly (absence of the skull) and lived for 3 hours after birth.

My third was totally complication free and she was born at 37 weeks (once again, due to the complications of my oldest) and was 7lbs11ozs and 21 inches long- they told us she would have been a 9-10lb baby if she was born term.

I had each baby at 23, 25 and 27 years, I’m 30 now so I have spent almost my full adult life being called “mommy.”

I read all the books, blogs and joined all the support forums I could find. What to Expect was my bible through my first pregnancy and through her early years but nothing could prepare me for the almost 9 months of hell I was in for after having my baby.

When I was 22 and newly married, I found out I was pregnant. I was young, naive and even though I knew it was a huge sacrifice, I had a glorified image of pregnancy and motherhood. I knew it wouldn’t be a walk in the park and that I wouldn’t have near the freedom I had before but I still imagined taking the baby to baby and me classes, taking her out in cute little outfits with friends (since most of mine, at that time were also pregnant or new mommies) and late night cuddles. I thought of play dates and hanging out with friends would simply end up taking place at kid friendly places instead of bars. I had no idea what the dark side of pregnancy involved. I had heard of conditions like Pre-Eclampsia but the thought never crossed my mind that it could happen to me.

I decided to sit down and ask myself what 30 year old me wished 23, 25 and even 27 year old me knew. I was able to come up with a quick list of six major things I wish people had told me

  1. Take folic acid- lots of it. I didn’t realize how important it really was. I did make sure my pre-natals had it, but that was it. After dealing with Pre-E and losing another baby to Anencephaly, I joined a support group for people who lost babies to the disorder and that was when I read about folic acid and how vital it is to healthy pregnancies. I also learned about the MTHFR and after asking for a simple blood test, I found out I had a more severe form of the lesser mutation- which means my body only processes about 7% of the folic acid I eat.
  2. Swelling all over to the point where you do not look human IS NOT NORMAL. Don’t call Labor and delivery, go in to the ER to get checked- especially if swelling in the hands and face comes with headache and lightheaded or any other sign of high blood pressure. Pre-Eclampsia is serious, but can be managed if it’s caught early on.
  3. Lay off the baby books- especially if you have a preemie- seriously, cut it out. If your baby doesn’t develop by the books (either advanced or behind) they will stress you out more than help- it’s nice to know what “normal” development is, but if you start playing comparisons, it will make you lose your mind.
  4. Go ahead and complain about the morning sickness, crampy feelings, bloated feeling, headaches, mood swings, exhaustion and everything else- being pregnant sucks and it’s ok to not enjoy the symptoms- it’s the end result we all want.
  5. Do not freak out after being given the epidural. It doesn’t make all feeling go away- just the pain. With my first c section, they had to put me under as soon as she was out. I thought it was about to wear off in the middle of the c section. I always assumed that I would be totally numb and that I wouldn’t even feel the surgeon pull the baby out. My second two c sections went smoother because I knew what to expect.
  6. Enjoy the last little bit of freedom- the sleepless nights do not last long (be a few months, they WILL sleep through the night) but that small window of time in between feels like an eternity- and there will be times you will wake up freaked out in the middle of the night because your baby sighed and you thought they were choking- that is normal.

I wish I could go back in time, knowing what I know now, and possibly fix some of the things I feel I did wrong. Since I can’t change the past, I do try to share these tips when the topics come up. I’ll push the subject of folic acid or full body swelling when I’m talking to a friend who’s newly pregnant or trying to conceive. I have many other lessons I have learned in my 7 years of being mommy, but these stick out the most as the pieces of advice I wish I had listened to most.

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US Birthrate and Fertility Rates Dropping, Many Possible Reasons

I have been reading about the US’s declining birthrate along with the older generation reaching retirement age. The people they quoted acted worried about a smaller working population vs larger retired, disabled and sick/aging population. They named everything from women now choosing to put off having kids leading to a decline in fertility rates to Planned Parenthood and similar resources that help women plan out and prevent pregnancies. Paul Ryan even went as far as saying he did his part and had three kids.

What are the main reasons that keep coming up in discussions where choosing to either put off or avoid having kids is the subject?

The top reasons seem to be lack of good, affordable healthcare- even a lot of people working full time with degrees seem to have trouble affording the costs of paying insurance, deductibles and copays. Even if you’re lucky enough to have a decent insurance, the US has a higher mortality rate for both pregnant women and babies than a lot of other developed countries.

The costs associated with having kids also plays a huge role- it costs over 200k to raise a child and most of the time daycare for one child alone will cost over 20k a year. I know we were looking into daycares locally (low cost of living area) and decided not to because it would literally eat my whole paycheck. Daycares are also getting to be less trustable. They offer assistance, but also now allow random women to put in to run day cares out of their homes.  It’s frequently on the news about daycare providers harming kids, having drug paraphernalia and dangerous items (knives etc) out in easy reach and occasionally, they have gone as far as having children die in their care. This happens at the shady lower cost as well as higher, upper scale daycares so can you really trust daycares?

Maternity pay/leave is another higher up on the chart- most places do not pay adequately nor do they seem to give long enough leave to make it worth using. If you get pregnant while working in a lot of different places, if you already have temporary disability insurance, and have been working for over a year you can get paid 6 week leave. If you work less than a year and are not paying into it prior to getting pregnant, you’re out of luck unless the store also has maternity leave benefits mapped out and you’re eligible.

High costs of rent and cost of living in general– Couple that with the next on the list, stagnant and low incomes and you have large numbers of people who can barely pay back their astronomical loans while paying all other bills and you have the recipe for holding off on having kids. The costs of living continue to climb while wages are staying the same overall.

Women now have the option to have kids or not– this is a huge factor I’m sure. Women now have the options of birth control, they can go to college and focus on their career instead of getting married and staying home and not every women who grows up is forced by society to have kids (or be outcast).

But with the positive, negative can come in as well- women have choices now and there have been studies linking later maternal age can lead to infertility and other complications.

There have also been suggestions that fertility rates are dropping some maybe due to environment and others may be due to the later start dates for starting families and having kids but there have been studies that as a whole, rates are dropping.

There are many different opinions, ideas and reasons that people are holding off on having kids and that may not be a bad thing. Our population right now is aging, but after that generation leaves, won’t it start to even out again? Gen X started having less kids than the boomers did and now we’re down to a birthrate of 1.8 as of 2016. It is no longer needed to have a lot of kids to ensure the survival of your family’s genetics and it’s no longer that cheap to raise kids.

What reasons do you think I have missed?

 

 

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Winter Tips for Skin

The cold weather of winter hits your skin in multiple ways. The cold weather can wreck havic and dry your skin out. The dry air from running the heater sucks the moisture out as well. When you get sick, constantly blowing your nose chaps lips and dries out the skin under your nose above your lip. Winter is painful for skin but it doesn’t have to be. Here are a few tips to keep your skin smooth, moist and pain free during the dry winter months.

1. Wear sunscreen- just because it’s cold, doesn’t mean the sun isn’t a threat. It can be more of a threat due to reflecting off the snow (water). It can cause sunburn and sunburn is one of the leading causes of Melanoma (the most deadly form of skin cancer).

2. Use a moisturizer-with the chilled wind and dry air, a good hydrating moisturizer will be a must. Make sure to choose a hydrating formula because all this stuff dehydrates your skin and you need to replenish.

3. Drink lots of water- like I said in 2, dry air dehydrates your skin so drinking lots of water can help counteract the loss of moisture.

4. Use a cool mist humidifier or vaporizer. Using either of those at night while running the heat keeps the dry air from drying your throat or skin and I found it had me feeling better after one use. They both put moisture in the air so when you’re breathing in the heat, it puts the moisture back into your skin or throat.

5. If your lip or under your nose gets chapped, use vaseline or Aquafor- both help protect against further damage and both help heal chapped and painful skin. Usually 2-3 nights *along with using a vaporizer* is all it takes.

If anyone has anything to add to my list, let me know in the comments.

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Stop Blaming Millennials for your Failure to Evolve

Are millennials really to blame for so many failing businesses or industries? It seems every month there are new articles and lists about all the “beloved” industries that are failing and the millennial generation is to blame. Are we to blame, or are these industries and businesses just failing to keep up with changing times?

Retail, for one, is changing rapidly. The rise of Amazon from a book selling site to the powerhouse it is now is proof. Online retail is picking up popularity so stores like Walmart and Kroger are pushing to get in on it. Same with convenience, more people are now wanting to get their grocery shopping done faster so online site to store pickups are being developed. Walmart offers purchase online, a group of shoppers pick everything up and they deliver it to your car when you check in at an onsite kiosk. Kroger is offering similar and so are other retailers. Amazon has been testing out cashier less stores in some states.

Stores like KMart are failing and closing down all around. Toys R Us closed. Walmart and Target are both still standing firm. Walmart is constantly changing. They now have (too many) apps to work around various offers. They offer ship to store for free- you can order anything they sell online and have it shipped in less than a week to a store close to you for free. They also let you do your grocery shopping online and pick it up at the store.

Some stores are testing delivery to peoples’ homes.

Outside of Retail, taxi cab services are taking a hit thanks to giants like Uber and other driver services. Ubers tend to pick up faster. I know personally, I waited 4 hours for a cab once and gave up. They are failing to stack up to the standards of the customers, so now other services are starting to beat them.

We are also blamed for run of the mill, nothing special restaurants (Applebees being a prime example). I personally don’t know many people who are huge Applebee’s fans. Last time I went was using a gift card and the food is basically generic- there is nothing memorable about going (although I did have good service with my food limitations and didn’t get sick). Other restaurants similar are also feeling hits- The bar and grill is my personal favorite type of restaurant, but it seems to be failing just as much. People in my age range are wanting faster service- but healthier services and how the business owners give back is just as important.

Not all businesses are able to keep up with the changing times, but quit blaming a whole generation for not being interested.

Napkins are a waste of money when paper towels are more absorbent, golf is boring, country clubs are boring to those of us not interested in drinking and restaurants like Applebees don’t stand out.

.

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About 1P36 Deletion- Why Do I Even Have To Know?

              Why Do I Even Know What 1P36 Deletion Syndrome Is?

              I never thought we would be traveling down this path. I had severe Pre-Eclampsia at 28 weeks and had my baby weighing only 1lb 11.5ozs and 13 inches long. She was on a feeding tube, oxygen and heart monitor. She stayed in the NICU almost 9 months. She had Retinopathy of Prematurity (where her retinas were detaching from her eyeball) and required laser eye surgery. She also had five holes in her heart- PDA, ASD and three muscular VSDs. We had to have two of the holes (PDA and ASD) closed, luckily they were able to close them through a catherization instead of open heart. She also had feeding troubles after being on oxygen for so long, so the last of her surgeries was getting a g-tube placed in her stomach.

              She came home at eight and a half months old still on a nasal cannula and heart monitor that beeped every time she kicked her feet. She also still had the development of a newborn since she had been lying in a crib most of her life. For the first few months of having her home, we had a home nurse come to the house daily to help us out. I was testing the day time nurses to see if I could seek employment again whhile they took care of her during the day. The first outing we had as a family resulted in her getting a cold. A simple cold shouldn’t be that bad, right? It wasn’t RSV or anything more than a simple cold- and it landed her back in the PICU and on life support so I knew we couldn’t place her in day care, the nursing fell through and I had to cancel it so I decided to stay home with her instead.

              We were nervous for the first few months of taking her out of her crib too long, so we would keep her in the crib except during play time and feedings, baths and spending some time with her. I regret that to this day, but if her cannula came out of her nose for any length of time, she’d start turning blue. We finally figured out how to place her main oxygen tank so it could stretch all through the house and we were able to take her downstairs to be with us during the day, luckily that didn’t last long and around 15 months, she finally had strong enough lungs to get rid of the tube. By that time, she was finally starting to be able to lift her head and crawl during belly time. By three, she started walking without assistance but by that time, we had a misdiagnosis of Cerebral Palsy and she had started Pre-K. She had finished early intervention (birth to three in this state) and she loved Pre-School. Her first year, she didn’t talk and had to be carried. By the end of the year, she was walking holding the teacher’s hand and starting to say words. By four, she was walking on her own, by five she was walking and doing more talking. She started Kindergarten and entered a special class with an IEP. She had a tablet device to help her communicate. Now at seven, they’re putting her in second grade. She’s able to jump about an inch off the ground, walk up and down stairs, run slowly and speak in sentences (short sentences), her hole have fully closed up and she has a normal heart now. She still can’t write but she can read and is starting to be able to do basic math, she understands more than she’s able to communicate back to us.

So, what is 1P36 Deletion Syndrome?

              The first chromosome is the largest chromosome. It may be the most important to development. It is separated into two parts (1P and 1Q) 1P is the shorter arm and 1Q is the longer arm. The whole chromosome contains about 249 million DNA base pairs. 1P36 Deletion syndrome is when a part of DNA is deleted from the 1P arm at the 36 base. My daughter’s particular is 1P36.12-1P36.22. Different areas cause different symptoms but the syndrome has some common symptoms-

1. Low muscle tone (hypotonia)

2. Seizures

3. Growth and feeding issues

4. Developmental delays

5. Birth defects like cleft lip, pallet, heart defects or brain defects

6. Cardiomyopathy (enlarged heart)

7. Hearing loss

8. Vision problems

9. Thyroid problems (mainly hypo but this condition seems to put them at higher risk)

10. Behavior problems (self harm, throwing objects, hitting, melt downs, screaming etc)

              Those are the more common problems. There are some that are more rare- early puberty, undecended testes in boys at birth, scoliosis, neuroblastoma (extremely rare)

              Some of the other random common yet uncommon symptoms include shaking while excited and biting on their hands. My daughter has chew marks all over her hands, we try giving her chewies to use instead but she still has litte blisters. I thought it was anxiety for a long time, but learned it’s a symptom of the 1P36 Deletion Syndrome.

How common is 1P36 Deletion Syndrome and how does it happen?

It’s rare, but one of the more common genetic disorders. It affects 1 in 5-10,000. It’s not completely known how many since there are a lot of kids who go undiagnosed.

It can be passed down but it’s more common to be a random occurrence with no family history.

When it is genetic, the parents usually have what is called a balanced translocation. A balanced translocation is when part of the gene didn’t attach in the proper location and connected to a different gene. Since the gene is there, the carrier shows no symptoms and doesn’t have the syndrome- but they have a 50% chance of any offspring inheriting the deletion.

What’s the prognosis?

              Most children with 1P live into adulthood and with symptoms controlled, can live average lifespans. Some of the complications can take their lives early, but the prognosis isn’t bad. Our geneticist told us our daughter has a 50/50 chance of needing a care taker or living a normal life. There isn’t enough known yet as to the full severity.

              Our case isn’t as extreme as some of the cases I have run across in the forums and support groups I have joined, but it’s not the least extreme. She speaks in basic sentences and her speech seems to improve as her (normal developing) two year old sister’s does. She is fully potty trained, including at night but she has trouble tolerating loud noises and while her gross motor skills are improving, her fine motor still need to catch up. We lucked out and the majority of her problems seem to be physical,(not mental) she developed no brain bleeds or defects and doesn’t have seizures. She did have the heart defects, but they were easily fixable and she speaks more than a few words now. No two cases of any disorder will be the same. There are online support websites available, a yearly conference that is held in late July or early August. The conference for 2018 is from July 26-28 in Houston, Texas.

              The major website is http://www.1p36dsa.org. They have resources, information about the disorder, information for families a store and opportunities to get involved in spreading awareness or just making donations. They are a nonprofit dedicated to education and awareness.