Divorce and the Special Needs Family - Vow Not to be a Statistic

It's an ugly thought to dwell on, but divorce rates amongst families with Special Needs children are high. I had a difficult time tracking down numbers that were associated with credible sources so when I quote the following statistics, it's with nothing to back them up. I'm sharing them because even if these numbers aren't true, our society believes they are. That's a grim statement about how family life with a Special Needs child (or children) is perceived.

- 85-90% of parents with Autistic children divorce.
- 75% of parents who experience multiple miscarriages or lose a child divorce.
- 75% of parents with a Special Needs child divorce.

When Clara-Bear was in the hospital for a month following RSV, we developed a good relationship with many of her specialists. Her Infectious Disease doctor brought us a newspaper article that quoted the 75% of parents with SN children divorce rate and she complimented us on our communication. We laughed of course, because anybody who's every watched us try to do a home improvement project knows that communication is not our strong suit.

But one thing we do communicate well about is our feelings about Clara-Bear. We promised each early on that we would not judge each other for expressing our feelings about the changes a Special Needs child brings to our vision of a family. And no matter where else we have clashed as a couple, almost 5 years later we are still keeping this one promise.

Society is correct in viewing married life with a Special Needs child as stressful at times. But I think they are looking through fear goggles and exaggerating the stress. I know we are living some of our friends' worst fears for their children, but most of those fears are based in ignorance. Just because they can't relate to our struggles doesn't make the struggles any worse than theirs or the pressure on our relationship any different than what couples around the world face. The pressure is just different. And we live in a society that still can view different as something to be feared.

There are so many reasons a marriage can fail. And bringing a Special Needs child into an already rocky relationship can be the unfortunate final straw for some. Only you and your partner can decide how your relationship will evolve with your family. Don't just worry about it, vow together to fight for your family.
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Don't Let the Sun Fool You, Flu Season isn't Over Yet!

How's the weather? It has been gorgeous here in Mid-Tennessee lately. Sunny, in the 60's, finally feeling like this long, yucky winter is over. If you're home bound like us or bringing home a new baby it's easy to get excited and want to grab your kids and go, go, go. But did you know Seasonal Flu rates are typically at their highest in the month of February, and at their third highest in March?

This cute little bar graph from the CDC says it all:

Peak Month of Influenza Activity 1976—77 through 2008—09 Seasons


What does this mean for us? It means don't get casual, we're not out of the weeds yet. Cough or sneeze into your elbow, sanitize your hands often when you are out if you have little ones to protect back home, and use proper hand washing techniques.

Don't forget to use a sanitizing wipe on your cell phone, keys, debit/credit card, favorite pen, tv remote, digital camera, door handles, and light switches. And don't let your baby play with these during Flu Season. They are a known to be breeding grounds for germs.

If your baby is out shopping with you, sanitize your hands before touching your baby. I actually saw a woman sit her baby on the pharmacy counter during Flu Season and start rubbing her finger across his lips making funny noises. I wondered how many coughing and hacking people had waited at that counter that day. And I thought of all the scared parents of hospitalized babies and small children I've seen who have been confused about how their baby could be so ill when nobody else in the family was sick.

No, it's not trying to create a bubble. Yes, your baby needs exposure to germs to develop immunities. But your baby has to have a fully functioning immune system before he can fight off germs and develop antibodies to future illness. If you have a newborn or a baby who is especially vulnerable to Seasonal Flu, H1N1, or RSV, follow the recommendations of the CDC and your baby's Pediatrician and be extra careful during Flu Season.

How long Flu Season lasts varies throughout the country. Your physician should be more than happy to answer your questions about how to keep your family safe as we look forward to the sunshine at the end of Flu Season.
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You Know You're the Parent of a Preemie When...

This was going around 4 1/2 years ago when my daughter was in NICU, but I think some parts look a little different in this version than what I remember. I tried to see if I could find an author to give credit to, but this is in so many places on the Internet that I couldn't find the original source. Even though the days of counting every ounce Clara-Bear gained or lost are long gone, this still brings back memories. Enjoy!

You Know You're the Parent of a Preemie When...

1. You use strange initials (C-PAP, CCs, NICU, NG) when discussing your child.

2. You actually remember how many CCs make up an ounce.

3. You count his weight in grams.

4. The skin on your hands is peeling from washing so often!

5. You hesitate when someone asks his/her age, but you know exactly how much he/she weighs!

6. The answer to "How old is your baby?" is a story 30 minutes long!

7. When someone asks his birthday, you reply, "Which one?"

8. You start to understand some of the things they say on ER!

9. You turn into Kung-Fu Mom when someone tries to touch your baby.

10. You attempt to measure just how much spit-up he/she just had before you clean it up!

11. You know how much he weighs before putting him on the scale at the doctor's office

12. You cry at Maternity Ward and get mad at Baby Story.

13. You see a 7lb newborn and say "Wow! She's so BIG!"

14. Your baby is months old before he can even go to the mall.

15. You have never explained why your baby is on an apnea monitor.

16. When someone says how tiny your baby is, you argue that he is huge -- and to demonstrate, you whip out pictures of him in NICU.

17. You do a health check on people when they come to your house to visit.

18. You make people wash their hands before going near your child.

19. You want to scream when someone says that she just wants to have this baby now - at week 28, 32, or 34.

20. You are so amazed when someone actually tells you your baby is big for his age!

21. You tried to find a place to buy newborn size diapers in bulk.

22. You called half your relatives when the baby grew out of their first pair of pajamas!

23. You never take your child for granted.

24. You worry about RSV season and it is still weeks away . . .

25. You know what "RSV" stands for.

26. You donate his/her tiny clothes to the NICU and marvel that they seem so small - when they were too darn large!

27. Your son gets a simple cold and her doc sees him within the hour!

28. People say, "He CAN'T be __ old...he's too little!"

29. It has taken hi.m 5 months to grow INTO newborn clothes!

30. You pick up 2 pounds of ground beef and think that your baby was born at the same weight

31. You buy "Purell" in bulk.

32. You can stare at your baby for hours when he sleeps.

33. You know more about oxygen tanks and regulators than the company supplying it to the airplanes.
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Do You Know Enough about SIDS Prevention? Take the Back to Sleep Quiz

Anybody who has had a baby since 1994 has heard of Back to Sleep – a U.S. government sponsored parent education campaign that has reduced SIDS (or crib deaths) by over 50% since the program’s start.

In 2006, Back to Sleep was updated to include recommendations for NICU and preemies. But recent studies have found that nurses have not always been given the tools needed to implement Back to Sleep guidelines in the hospital and this has affected their teaching.

Take this Back to Sleep quiz to see if you know the facts about SIDS prevention and Back to Sleep guidelines.

True or False:
1) The only thing I need to know about Back to Sleep is that my baby should sleep on his back.
2) Secondhand cigarette smoke increases the risk of SIDS.
3) Back to Sleep guidelines are recommended until a baby is 1 years old, even if the baby is big or rolling over on their own.
4) Crib quilts, small pillows, bumpers and stuffed toys are never safe, even if they are not touching the baby’s face.
5) My baby will wake up if a blanket or soft toy is making it difficult for her to breathe.
6) I should not place my baby on his back to sleep if I’m worried about his head flattening.
7) Both boys and girls are at risk for SIDS.
8) Pillows should never be placed directly under an infant who needs to sleep with her head elevated for reflux or respiratory problems.
9) If I can’t use blankets on my baby, then I should keep the room warm or dress him extra warm.
10) I should swaddle my newborn or preemoe and put a hat on her while she sleeps so she doesn’t get cold.
11) Since pacifiers are a part of SIDS prevention, I should force my baby to use one and put it back in his mouth if it falls out when he’s asleep.
12) Using a positioning roll to keep a baby on his side is a safe alternative to back sleeping and will prevent choking if the baby spits up.

Answers:
1) FALSE. There is so much more to know! Read on!
2) TRUE. It’s not just about the smoke, it's the chemicals in the smoke that remain long after the smoke is gone (third hand smoke). This doesn’t just apply to smoking in a house or car while the baby is present. People who step outside to smoke trap smoke in their clothes. Car fabrics and car seats absorb smoke, even if the smoker cracks the window. This exposure increases the risk of SIDS as well as asthma, allergies, and ear infections.
3) TRUE. Being big or healthy does not reduce the risk of SIDS. Back to Sleep can be a struggle when your baby starts rolling over around 4 to 7 months, but you still need to try to return your baby to his back.
4) TRUE. SIDS doesn’t just happen when the baby’s face is covered. It’s believed that soft items close to the baby’s nose and mouth combined with the way a sleeping baby breathes can lead to SIDS deaths. Pushing cute bedding and toys to the bottom of the crib doesn’t protect the baby – even very new babies can get themselves into some unusual positions and places. It’s not uncommon for a baby to move around the crib while half asleep or crying, then fall back asleep someplace unexpected. Older babies can travel in the crib while still asleep. The picture at the top of this post is an example of how your baby's crib should look when your baby is sleeping in it.
5) FALSE. It’s believed that SIDS deaths occur because the baby cannot sense that he is not getting enough oxygen and reflexively wake up until after 1 year of age.
6) FALSE. Increasing tummy time and changing how and where you position your baby while he is awake will prevent head flattening. More on this later.
7) TRUE. SIDS affects more boys than girls, but baby girls are still at risk.
8) TRUE. Elevate the head of the bed, not the baby! We had to elevate the crib head for both of my babies, and we found the easiest way was to have a piece of MDF (or plywood) cut to the size of the crib mattress then put that under the mattress. We used folded blankets and a pillow between the wood and crib frame to create a wedge. Sleep wedges that are meant to go under a baby’s face can also be purchased.
9) FALSE. Being overly warm increases the risk of SIDS. Keep room temperature between 68 and 72 degrees, basically an adult should be comfortable in short sleeves. Dress baby in a properly fitting sleeper, with a onesie or tee shirt underneath if needed. Keep the crib away from windows and out of drafts.
10) FALSE. This one is hard for NICU grads, where the baby was always swaddled, wearing a hat, and there might even have been a blanket draped over the head of the bassinet. A baby should not wear a hat while sleeping. It’s a lot easier for parents to control the lighting, room temperature, and drafts at home then it is in a hospital.
11) FALSE. While pacifier use has been shown to reduce the risk of SIDS, not every baby is soothed by a paci so it shouldn’t be forced. Breastfed babies should be offered the paci after a month of successful breastfeeding (don’t worry – nothing will be as good as Mom at that point). Remember, this is about SIDS prevention. Anti-pacifier philosophy is a leftover from “Before We Knew Better” when compared to your baby’s life. It’s okay to limit paci use to only as your baby is falling asleep. That’s the time when it’s effective in reducing the risk of SIDS. When it falls out of baby’s mouth, leave it out. Pacifier as the baby is falling asleep and pacifier to soothe in other situations are two different things. Some parents are concerned about baby’s getting hooked on the paci even if its use is limited. There are a lot of resources out there dealing with how to get a baby or toddler off the paci. I’d rather have a two year old with a pacifier or a kid with braces than the other possibility. Of course, there is no guarantee that the pacifier will prevent SIDS death, but it’s a simple and cheap way to reduce a baby’s risk.
12) FALSE. A healthy baby will turn their head to the side if they spit up, many already sleep with their head turned while on their back. The concern with positioning wedges is that a baby can flip (even newborns can flip sometimes) or slide and wind up in a potentially dangerous position. If you have a preemie or baby with medical concerns, talk to your pediatrician about safe sleep positioning for your baby.

Reducing the Risk of SIDS in Childcare is a free online course for parents, caregivers, and healthcare professionals interested in learning to create a safe sleep environment for infants. Use code SIDSCCP to access the course for free.

Helping Baby Back to Sleep describes Back to Sleep guidelines and answers FAQ's.

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How Many Warnings does it take before a Baby Product isn’t Safe?

This is Part 1 of a 2 part post.

There are some silly baby products out there that make me laugh every time I think of them. My top two are a little “tee pee” to cover a baby boy’s winkie in case he pees during a diaper change, and a onesie with a belly button opening for easy access during umbilical cord care. Worst case scenario with products like these is you waste a little money and possibly get teased about being an over-worried new mom. Though some moms give the funniest products great reviews, so obviously these silly seeming products have a role in some people's lives.

I saw two baby products that did not make me laugh recently on a baby product review and giveaway blog. They initially scared me. I quickly envisioned bad things happening to helpless babies if these products were used. Visiting the actual product websites has reassured me, but I’m still worried about misuse. Two of the websites did a good job of addressing safety concerns and telling us where and how the products should and should not be used. One website gave a partial description of the limits. The original blog reviews I read did neither.

All this conflicting information left me wondering. How many other blogs, websites, and friends are selling, giving, or recommending these products without listing important do’s and don’ts? What happens when these products are passed along or sold secondhand, without the warnings that were a part of the original packaging? Should manufacturers trust that users will read directions and warnings for such simple looking and adorable baby products?


I am a sucker for baby hats. The Downtime Sleepy Hat covers baby’s eyes to block out light during a nap and is one of the cutest things I have ever seen. Many of my safety concerns were reassured in their Safety Tips page. But do I really want to use a baby product that requires a Safety Tips page with an opening line of “Our Downtime Sleepy hat is completely safe when used appropriately”?

SIDS prevention advises against babies sleeping in hats. It also warns us that loose fabric near a baby’s nose and mouth is as dangerous as fabric covering a baby’s nose and mouth. So I was definitely reassured to read that the Downtime Sleepy Hat’s fabric is breathable. But it “is not sleepwear and is not flame resistant.” Oh. The Sleepy Hat is not sleep wear. There might be some room for confusion here.

The Safety Tips also make it clear that “caregivers are responsible for ensuring that their child is safe and comfortable”. This includes monitoring your baby for physical comfort, overheating, and emotional well-being when her eyes are covered by the hat. We already do that as parents so that's not a stretch. But I have always found this challenging when my baby is in a rear facing car seat, like a couple of the babies pictured on the website.

Trust me, I get it. I know how stressful the never ending exhaustion and worry can be when your baby is not a good sleeper. But as much as I keep trying to like the Downtime Sleepy Hat, red flags keep popping up. As much as they have tried to address safety issues, I’m left uneasy. I’m glad that my babies are past the point of needing something like this, because I don’t know if I would think as critically about the pro’s and con’s of this hat is I felt my baby really needed help sleeping. I would love to have this and the next product that has me concerned in the NICU or PICU, where babies are monitored by medical equipment and people 24/7.

To be continued…
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Current Giveaway: Tiny Steps My Journey through the NICU Journaling Scrapbook

Clara-Bear's two volumes of NICU scrapbooks are precious to me. Not just because they're full of memories of such an amazing and surreal time in our lives, but also because they're probably the only scrapbooks I'll ever make. Clara-Bear was in NICU at East Tennessee Children's Hospital and we were blessed that donors were funding scrap booking supplies for parents. There were times I resented choosing papers and letters in the scrapbooking room when I really wanted to sit and stare at my baby. But I am so glad I stuck it out. I knew that even in perfect times I was just not a scrapbooker. I was right - it took me 2 years to make the last couple of pages.

Esther Thomas, a NICU nurse with over 18 years experience has simplified the scrapbooking process for tired and stressed parents with her creation, Tiny Steps: My Journey through the NICU. The scrapbook pages are beautifully pre-printed in a sturdy album. Esther uses her knowledge of NICU milestones to make it easier for parents to document special events and her faith to provide inspirational verses to help carry you through the stressful times. Tiny Steps is not just a scrapbook, it's also a journal. I have pictures but no journal from our NICU days, and wish Clara-Bear's journey was captured in my words as well as our pictures.

Tiny Steps: My Journey through the NICU is great for parents who have babies in the NICU or who have NICU grads. This would also be a thoughtful edition to a Welcome basket from your Special Needs organization. Retail value: $19.95.

You have the opportunity to enter this giveaway up to 12 times!!:

(Email me for directions on how to post anonymous entries)

Mandatory First Entry: Visit the Tiny Steps webpage and write a comment about what makes Tiny Steps: My Journey through the NICU so special.

The mandatory first entry must be completed before posting any of these additional entries.

For an additional 3 entries: Become a follower of able2able. Post 3 separate comments for your entries as a new follower. Current able2able followers may enter any giveaway an additional 3 times.

For an additional 2 entries: Sign up for able2able's Twitter feed. If you are already receiving our Tweets, you can still enter twice. Post a comment for each entry.

For an additional 2 entries: Post a link to this giveaway on your Facebook status. Post a comment for each entry for your Facebook update.

For an additional 4 entries: Blog about this giveaway! Your blog post must include links to able2able and to Tiny Steps. Include a link to your blog post in your comment. You must post a comment for each entry (but you only have to include the link in one of your comments if it saves you time).

It is very important that you post a comment for each entry. Why? Because a random number generator will be used to select the winner. Each comment will be numbered by Blogger, and I will use those numbers for the drawing. So if you combine entries into one post all your entries will not be counted. There will be no do-overs! I will verify that the winning entry has met the requirements above, so if your comment for a FB status update is the winning comment then I will want to see that update, etc. If I cannot verify your entry, then all your entries will be removed from the list and the drawing will be repeated.

This giveaway ends at 11:59 pm (CT) on Friday, March 19th. The winner's name will be posted on able2able on Saturday, March 20th and I will also email you. The lucky winner will have until 11:59 pm (CT) Monday, March 22 to contact me.

able2able... Your Special Needs Resource Directory has not been compensated with either $$$ or product for this giveaway.
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A Good Reason for Prenatal Screening Your OB Probably Won't Tell You About

A recent article about prenatal screening in our local Sunday paper triggered one of my pet peeves (A Vanishing Breed, by Marilyn Marchione, The Tennessean, Sunday, February 21,2010). Some of you might have seen it, it was an AP article so might have been in your local paper as well. The header under the title reads: "With lower costs and greater access, prenatal screening is close to eliminating some genetic disorders." The article discussed how parents are using genetic screening of themselves or of embryos to limit the occurrence of hereditary medical conditions like Cystic Fibrosis or Huntington's Disease. Some dating services are screening members then discouraging connecting with other members who are known carriers for genetic disorders as an ethical approach to reducing hereditary diseases.

The article talks mostly in terms of medical conditions that will affect the health of a baby and could be life-limiting in some cases. But the article also mentions Down Syndrome, with the disclaimer that DS is not usually something that the parents can be screened for, but that it is a chromosomal disorder that can be diagnosed during pregnancy with common prenatal screenings (we can get into the exceptions to this later if you want). My pet peeve is not an angry one, but more of confused frustration. There is a good reason for prenatal screening that has nothing to do with terminating a pregnancy, rejecting embryos before implantation, deciding whether to conceive together, or steering you away from future mates. So how come OB's rarely talk about this reason and it's rarely presented as a point of view in articles like this?

In January, 2005, I was 39 years old and trying to get pregnant for the first time. Like many, my answer when I asked if I planned to have prenatal screening was "Why? It's not going to change anything." Then, one day as I was working a shift on a post-partum floor, one of the other nurses brought a newborn to the nurse's station because he was having difficulty feeding. His blood sugar was low and he was acting sleepy, but we managed to get a little formula into him. His belly began blowing up like a little balloon in front of our eyes, and he started laboring to breathe.

I stayed with the baby while his nurse was calling the pediatrician, and began assessing him. A little over four hours after a traumatic vaginal delivery his face was still swollen and puffy, but the shape of his eyes and the bridge of his nose made me suspicious. His ears were slightly lowset and his neck seemed a little thick. Then I saw the creases on his palms and had no more doubts. This baby had Down Syndrome and obviously was born with some medical concerns that were interfering with digestion and possibly a heart condition. His parents had no clue. And to make this moment more painful, he was the first baby born into a new church. The waiting room and mother's room were full of his excited church family eager to welcome him. I will never forget the look in his mother's eyes when she saw how hard her baby was working to breathe and was told that he needed to go to NICU immediately for stabilization and further testing. Five years later, I still cry at the memory.

I decided then and there that this would not be my baby and I would not be that mother. If my baby needed help, I wanted help waiting for her in the delivery room. I didn't want our celebration to turn to tears and possibly fear for my baby's life. I wanted my baby to have access to every technology and any specialist that could save her life and spare us from this type of emotional and medical crisis. Choosing prenatal screening suddenly became a way to choose life by protecting it. I had no clue at that time, but two months before I conceived my daughter God was opening my eyes to the most precious reason of all to agree to prenatal screening - and it saved my daughter's life.

When I had my amnio at 17 weeks, I never expected to actually hear that my daughter has Down Syndrome. My pregnancy probably would have been followed closely because of my age and my daughter's tiny size, but we'll never know if I would have had ultrasounds as often as I did (every two weeks) without her diagnosis. We'll never know if I would have had that heart wrenching ultrasound at 26 weeks when her placental blood flow problems were found, or if she would have died quietly inside me before our 27th week.

I do know that we had state of the art prenatal care and an opportunity to choose where we delivered based on my daughter's now known needs. I am so grateful that I had an opportunity to work through my reaction to the diagnosis and return to the joy of preparing for my first baby. There was time to begin educating ourselves about her possible needs and her potential as a person. She had her first echocardiogram by a Pediatric Cardiologist before she was born. There would have been a NICU team waiting for her in the OB OR even if she had not been born so prematurely. She received the care and special planning she needed, and God made sure that as her parents, we received the loving support and education we needed.

It took 88 days in NICU, but my baby came home. I hate her medical issues and worry about her developmental delays, but I am so proud of Clara-Bear. I'm excited for her future. I don't want to wish her childhood away, but I cannot wait to see what kind of person she will be when she's grown up and am so excited at the thought of watching her change and grow! Aren't these good enough reasons to talk to your OB about prenatal screening?
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You Know You're the Parent of a Special Needs Child When...

...a tiny nosebleed instantly sends your mind rushing ahead to all the bad reasons for a nosebleed, even though you just saw your child fall!

Post a comment if you ever have those moments! Read more!