Things to Do

Planning for the Arrival of your Special Baby

Disabilities are defined as physical or mental challenges that prevent people from being able to perform certain functions as well as most others. Children with disabilities may be born with them or they may develop sometime after birth.

Common childhood disabilities include autism, Down syndrome, physical disabilities, and issues that can disrupt learning such as dyslexia, attention deficit/hyperactivity disorder (ADHD), and sensory processing deficits. Dealing with disability in childhood will have a lifelong impact on a person’s emotional, mental, and physical health, as well as their social interactions. Whether that impact is positive or negative has a lot to do with the support they receive at home. 

Whether you are expecting a child and you just learned about their disability from prenatal testing or you are adopting a child with an existing disability into your home, you can help facilitate a healthy environment that supports their healthy and happy development just as you would with a typical baby. Only you will be very proud of the extra details that you thought on your own to put in the nursery for your special baby.

Preparing Your Life for a Special Needs Child

By Jenny Wise

There are so many thoughts and emotions that whirl through your mind when you learn your baby has a disability. Once the initial surge of emotions has passed, it's time to think seriously about how you'll prepare your life for a child with a disability. These are the five things every parent of a special needs child should do before their baby is born.

Photo by Aditya Romansa on Unsplash

Prepare Your Home

Once you understand the nature of your child's disability, start thinking about home modifications that will create a safe, accessible environment for your child. Modifications will likely be minimal when your child is a newborn and can't move around, but as your child grows older, you'll want your home to be an environment that fosters independence. Planning now allows you to budget and schedule remodeling accordingly.

Accessibility remodeling can be costly. If you're worried you can't afford to modify your home, look into grants and other assistance programs. There are a variety of organizations that help families adapt their homes for disabilities.

Prepare Your Finances

may qualify for monthly SSI payments through the Social Security Administration. In most states, Medicaid eligibility is automatically triggered by SSI approval. You can learn more about SSI benefits at BBVA Compass. Whether you qualify for assistance or not, you'll need to carefully review your household budget to make room for your child's expenses. Consider that you may need to scale back how much you work in order to care for your child.

There are many other financial considerations for families with special needs children, many of them too complicated to go into here. You can read up on the basics at The Simple Dollar, but it's recommended you talk to a financial planner and an attorney.

Know Your Healthcare Options

This is not something to push aside until after the baby is born. Check your health insurance policy's,co-pays and limits on what they will pay annually. Your child may need both occupational and speech therapy for a long time. Get the best coverage possible before your baby is born.

About half of all children with special needs receive healthcare coverage through Medicaid and CHIP, according to the Kaiser Family Foundation. There are several pathways through which you can qualify for Medicaid, so don't assume your income makes you ineligible before doing your research. Families that don't quality for needs-based medical assistance must buy insurance through their employer or the public healthcare exchange. You may choose to double up on insurance to maximize coverage.

If buying insurance, pay attention to the out-of-pocket limit. Children with extensive healthcare needs hit their out-of-pocket limits quickly. You may save money by paying more for a policy with a lower out-of-pocket limit.

Identify Your Support System

Every new parent needs a support system, but support is especially important for parents of a child with disabilities. Seek and accept help from your friends and family. If you're not getting the support you need, ask for it. If you start determining who will be there for you to give moral support or a break when you are pregnant, then its one thing that you don't have to do after the baby is born. It seriously does take a villiage of helpers to raise a special needs child.

Many times, our loved ones want to help but don't know how and are afraid of overstepping. It's also important to seek support from parents who understand what you're going through. Online communities, blogs and support groups are safe spaces where you can connect and learn from other parents of special needs children.

Don't discount professional support. In addition to early intervention services, consider hiring home health care, a housekeeper and a counselor to lighten your load and help you cope.

Make a Self-Care Plan

It probably feels wrong to think about yourself right now, but the truth is, your baby needs you to. You're responsible for keeping your child safe, healthy and loved. If you're not taking care of yourself, you can't give your child your best.

Keep up with your healthy habits, like eating fresh food and exercising. If you need to schedule everything out and automate your meals through meal planning, batch cooking or meal delivery services, do it. Sleep when you can, even if that means hiring someone to clean the house so you can nap when the baby naps. And try to stay focused on the positives—keep a gratitude journal, give yourself pep talks, or do whatever else keeps you looking at the bright side.

Nothing can truly prepare you for raising a child with disabilities and the many joys and sorrows parenthood brings. However, when you address these questions before your baby arrives, you enter parenthood as ready as you can be.

Sharing The news

Sharing the news with friends and family that our daughter was born with Down Syndrome was a task that filled me with anxiety. In the beginning, I just wasn’t ready to talk about it.  I needed time to get my mind right and understand our new reality.

Set rules for yourself.

Personally, it was very important to me that the news of this diagnosis didn’t change how we celebrated our girl. To keep this value at the forefront, I had one important rule for myself: I’m not going to hide my daughter.

That boundary set early on helped me overcome fears as I decided when and whether to take public family outings and post photos on social media. If I was avoiding something out of a desire to hide Rory, I knew that I had to make a different choice.

What are some clear rules you can set for yourself so that you don’t fall into behavior you might look back and regret?

Do you have key people you feel should hear the news in person/first?

My parents, sibling, grandparents and closest girlfriends were on my list. I’m not going to lie this was hard. But, these intimate conversations were also life-giving. They will be in my heart for the entirety of my life. I was met with love and support. I didn’t start this train of face to face conversation until Rory was close to 8 days old and we were home. I was honest about my fears, what I needed from them and how I hoped they would love my daughter.

You don’t owe the world an explanation.

In the age of social media, public announcements are hard to avoid. In my case, I’d been blissfully sharing my pregnancy journey for 9 months with friends and family online. When Rory arrived with this extra news I had a ton of internal conflict regarding making a public statement about her diagnosis or not.

It gave me a lot of anxiety. It took me close to six months to finally put a name and statement to what we had been walking through. You don’t need to label your circumstances until you feel ready to do so. My “rules” came into play on this one. I wasn’t going to invite the general public into this personal moment until I could share our story in a positive light. How could I expect them to not feel pity for us if I was pitiful when telling them.

When developing your announcement think about how you wish you could have met your child or heard the news.

You will never get that moment back, but sharing your baby in the light you wish they would have been introduced to you is empowering. Remember, baby first, diagnosis second. Heck, send out a normal birth announcement, just them with no diagnosis attached to it. I was in a haze of shock and never sent one out for Aurora. I have regret over this now that we are out of those heavy days.

THERE IS NO RIGHT WAY TO DO THIS.
YOU WILL HEAR THAT YOU'VE GOT TO PUT YOUR EMOTIONS FIRST, YOUR FAMILY FIRST OR YOUR LITTLE ONE FIRST. THE GOOD LIFE ISN'T OVER.
THERE IS JOY IN THIS JOURNEY. 

It could also be a good idea to add some of these books to your Pregnancy Survival Kit for when you are feeling a bit down: they will definitely help you reconnet with baby and remind you that you are carrying a little miracle inside of you 🙂

8 Things I Regret Not Doing During My Pregnancy

With me being at the end of my first pregnancy I’m pretty much just winging the whole thing. I’m 4 days away from my due date and there are several things I wish I did to prepare more or accomplish.

I know that next time I’m pregnant I will definitely do these things before my baby comes, but that is a couple years from now.

I hope that y’all can learn from my mistakes and prepare better for your baby!

If there are any other things that y’all regret not doing sooner or at all comment them below for other mammas!

Take More Photos

I didn’t start taking bump photos till I was 16 weeks. I didn’t feel like I should because my bump didn’t even start showing till about 27 weeks, which frankly looked like I ate a little too much at Thanksgiving!

I only took pictures about every 3 weeks and I wish I would have taken one every week. It would have been more fun taking pictures with my husband as well. I have seen so many cute bump pictures that have the partner involved as well.

Next time I am definitely going to include him more in my weekly bump photos. He is going along in this journey with me as well!

Maternity Photoshoot

We also did not do a maternity photo shoot this time around. Which is crazy because I have so many photographers in my family!

I love seeing all of the cute photo shoots of couples and families together. They are so stinkin adorable!

I will for sure do a newborn photo shoot because it will be so special to have those photos taken with our new baby.

Mamma take advantage of doing photos with your significant other during this time of growing your baby.

Capture those cute and tender moments together because you will regret not doing it later on.

Update: As I was writing this post I texted my sister to see if she could take our pictures the next day. So 3 days before I was due we were taking our maternity photos! I am definitely a procrastinator.

Don’t wait till last minute because you never know when your baby is coming! If you plan on doing maternity photos most women get them done about a month and a half before.

Write In A Journal

Writing in a journal is such a great way to connect with your baby and to remember what your feelings and emotions are during your pregnancy.

It helps you to stay organized, relieve stress, self reflect, and you can look back at your feelings and experiences throughout pregnancy.

Let’s be honest it’s hard to remember everything while you are pregnant!

If you struggle with what to write read my post on pregnancy journal prompts!

Go On A Babymoon

I sooo wish we did a baby moon! The only time my husband and I go on vacations is to visit family. So no romantic getaways besides our honeymoon.

Essentially what a baby moon is for is to relax and connect more as a couple before your baby arrives. It’s best to do it during the golden 2nd trimester when you feel your best.

You don’t need to spend a lot or go somewhere exotic, unless you want to and can afford that! You could always just do a weekend trip at a place that will relax both of y’all and connect y’all together more.

You should do this because you never know when you will have time alone after the baby comes.

If you have other kids you can have a family member watch them for the weekend so you can be alone together.

Take A Spa Day

Take a spa day for yourself! Your body is creating a miracle inside of you and that takes a lot of work!

You need to have a day where you can get pampered, either going to an actual spa or asking your partner to give you a spa day at home.

Pregnancy can be hard and having a day to relax can lower your stress levels which is also beneficial for the baby. So there are multiple benefits for an R&R day!

Go On A Hospital Tour

This is something I wish I did much sooner, but it was kinda of out of my hands.

When I was thinking of doing it my hospital wasn’t running them because we are having the COVID19 Pandemic currently so they shut all tours down.

I have heard hospital tours are great to do with your partner so when the big moment comes you will know exactly where to go.

It’s also great to help familiarize you with the environment that your will be laboring at. You can ask questions and even preregister at the hospital as well.

Take A Prenatal Class

This is a great tool to prepare you for your labor and delivery! Every birth is different so learning as much as you can is a great resource.

There are plenty of free online courses or you can do the one your hospital provides (usually those are free too).

I did this super last minute, like the day of my due date. That is how last minute I did this to prepare for my first labor.

Hilary at Pulling Curls has awesome birth classes that are fantastic if you want a more in depth labor and delivery course. Her classes help you feel even more prepared for your labor! You could never over prepare.

She has a course that you can take alone, or you could take her couples course.

She is a labor nurse of over 20 years and she had a lot of great info to prep me for my labor. I felt very confident and ready after I took her courses, but I definitely wish I did them much sooner!

Please take birthing classes much sooner, not the day of your due date, and take a variety of them.

Freezer Meals

I stocked up on lots of food, but I didn’t do any meal prepping. Thank goodness my mother in law is coming and cooking us food. Also my church has several women who are going to be bringing us meals.

Not everyone has this option though so stock up on freezer meals because the last thing you will want to do is cook after baby comes.

I have a great board on Pinterest the is all about meal prep for after the baby! There are a lot of meals that you just dump in the crock pot and eat it later.

I hope y’all learn from my regrets and enjoy your pregnancy!

3 Simple Breathing Exercises to do Today for your Anxiety

Stress and anxiety are natural reactions to living. Read that again! Our body is wired to protect us and keep us safe.  When we anticipate real or perceived threats to our safety- emotional, mental or physical- we call on our fight, flight, or freeze responses. This is common and natural, and a pertinent function of our brain. You are not alone if you are experiencing stress or anxiety. 

Did you know one in five women experience anxiety during the perinatal period along with one in ten expectant fathers?

Pregnancy can absolutely accelerate the release of stress hormones.  An increase in stress and anxiety, with the additional pregnancy hormones we have at play, can bring on physical pains and issues too. Exercise, hydration, and rest are three tools we usually call on; but let me offer something you can do while driving, sitting on the couch, or at work. Really, anywhere!

Conscious breathing – Giving awareness to how we breath will:

• release ample oxygen flow to rebalance our central nervous system, 

• return your mental state to the present moment if your mind has been hijacked into perceived or real trauma, 

• bring your heart rate down,

• relax your body- especially places like your shoulders, lower back, and hips where tension builds!

Wherever you are on your journey, know that your breath supports all of your body’s important functions. Give it attention and practice to help release stress, calm anxiety, and enjoy the moment at hand.

4-count Breathing – This breathing exercise is hundreds of years old and a favorite in meditation. 

1. Inhale through your nose for four counts. 

2. Pause for four counts, if expecting, pause for just a second.

3. Exhale through your mouth for four counts.

4. Repeat while closing eyes or focusing on the same focal point.

With your mind focusing on counting the duration of the inhales and exhales, you are drastically drawn to the present moment and thoughts and distractions have no room to take space.

Blossom Breathing – This breathing exercise is taught in our “Your Best Birth” course as I love the mind+body connection it provides for calming your central nervous system, but also as it builds awareness to your pelvic floor. 

1. Place one hand on your chest and one hand below your belly button, cradling your bump if present.

2. Close your eyes and inhale through your nose allowing the abdomen to expand, and pelvic floor to open and drop.

3. Exhale deeply while tissues come back to where they started.

4. Repeat.

Mindful Breathing – You will breath by focusing attention on a visualization such as a balloon filling with air and emptying or a wave growing in height as it approaches the shore and then folding over to the shore.

1. Finding a comfortable seat, close your eyes and draw in a visual of something that takes two opposing forms.

2. Inhale deeply through your nose and picture something opening, like a hot air balloon being filled.

3. Exhale through your nose and visualize that same object releasing or decreasing in size.

4. Repeat and allow your visualization to distract negative thoughts and release them away.

Remember, breathing is an accessible tool if you are experiencing stress and anxiety pre and post birth.

Things to do during pregnancy so that you will not have regret

August 7, 2018

Pregnancy is one of the most beautiful stages in the female life, therefore there are many things you should try during pregnancy so that you will not regret them.

I  asked several women who had tried this experience, about the things they regret not doing during pregnancy.

Their answers differed from woman to woman depending on their interests.

I will show you the answers after I say my personal opinion on this subject.

For me, the most thing I regretted not doing during pregnancy is eating healthy and staying active.

Yes, there are many things it’s better to do during pregnancy:

• Ask your God to give you a healthy baby.

• Quit smoking if you’re a smoker.

• Stop drinking Alcohol.

• Eat healthily, take the pregnancy vitamins.

• Stay active.

• Avoid stress.

• Speak with your baby inside your tummy.

• Prepare yourself for Labour.

• Buy the new baby requirements. You can here have an idea of a what do you really need for a newborn.

• Learn how to avoid postpartum depression.

• Get enough knowledge about the signs of a healthy baby.

• Get enough knowledge about the common mistakes made by new mothers.

• Learn the right way to raise a happy child.

Now, I’ll show you the answers of the women:

1-pregnancy photo shoot and recording the birth:

•  pregnancy photo shoot and I wish I also have a photographer at my birth.

• Take more photos and embrace my beautiful belly baby’s.

• Maternity photos and more bump photos.

• Documenting my growing belly each week, such cool apps out now to do this.

• More newborn pictures.

• I wish I printed more of the digital photos I took since a lot have lost or hard to find throughout years of tech/computer upgrades/transfers. With the next bub, I will definitely be printing every month.

• I regret not getting birthday photos. I was adamant when I was pregnant that I didn’t want to see or have any photos or videos of my labour and the birth, and now when I look back on it I really wish I had.

• Video of Baby moving at 8 months.

Related:14 things to do to your baby in his first year so that you will not regret14 things to do to your baby in his first year so that you will not regret.

2- pregnancy massage, yoga and exercise:

• Back strengthening exercises as the little beans can get heavy.

• pelvic floor exercises, I really regret not doing it.

• Yoga.

• I didn’t have a chance for swimming.

3- Relax and enjoy the pregnancy:

• Sleep..TV..chill..all day..everyday.

• I wish when I was on maternity leave pre-baby I spent more time doing nothing, days in bed, watching TV shows or reading books.

• Relax and enjoy my pregnancy instead of stressing ridiculously about how on earth I’m supposed to push this watermelon out! I literally spent my whole pregnancy petrified of childbirth and didn’t let my self-enjoy the experience.

• Enjoy it! I was so unwell with both my kids that I just didn’t let myself enjoy pregnancy.

• Sleep 24 hours a day uninterrupted!!

4– prepare for labour:

• I regret that I did nothing to prepare for labour and I’ve done nothing post-baby.

• plan and get baby room ready.

5- Eat right and be more active:

• Eat right with my first pregnancy and keep active, now finding it hard to lose weight.

• I ate too much and should have done some exercises.

• Left my bed and remained active.

• Keeping weight under control.

Also read:17 things you should never ever do to your baby in his first year. 

6- Using compression belt:

• I regret not using compression belt Compression belt after babies were born.

7- Spending more time with the partner is one of the things you’ll regret not doing during pregnancy:

• Enjoy the time I got to myself, do more with just me and my partner like dinner, movies, a little holiday, enjoy each other.

• Enjoying more time with my partner and really cherishing that time.

• Going on a little gateway with my husband for a couple of days.

8- Gender reveal party and baby shower:

• I didn’t have a baby shower, I wish I had a little celebration dinner.

• Should have planned my own baby shower instead of waiting for someone to offer.

• Gender reveal party, really regret not doing that.

9- Appreciate the baby inside my belly:

• I didn’t take enough time to appreciate the baby inside my belly. The second he was born I mean asked him inside of me. Having another chance I would have set a reminder in my phone and took 5 minutes a day to still and love that baby in there. Towards the end, I would have talked more to him also.

10- Belly cast:

• I really regret not doing belly cast for my pregnancy.

• After birth, I wish I had done the hand feet/casting.

Another thing they regret not doing during pregnancy:

• Not having pregnancy vitamins.

• 3D and 4D ultrasound.

• Finish work earlier.

• Save money.

• Freezer meals.

• Not going to a Metallica concert.

• Not having a body pillow and maternity clothes.

Now, if you lived this experience before, what are the things you are for doing during pregnancy, and what the things you regret not doing?

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Prenatal Testing During Pregnancy

by Maria Masters

 Medically Reviewed by Jennifer Wu, M.D., F.A.C.O.G. on March 29, 2021iStock

Learn the basics of the prenatal tests and screenings you’ll be offered throughout your pregnancy.

IN THIS ARTICLE

• Types of prenatal tests and screenings 

• Prenatal screening and testing 

• First trimester genetic screening and diagnostic testing 

• Second trimester genetic screening and diagnostic testing 

• Third trimester screening and testing 

• Questions to ask about prenatal testing 

• Preparing yourself for prenatal tests 

Throughout your pregnancy, you’ll probably be poked, prodded and pressed by practitioners more than ever before. Fortunately, many of these prenatal screenings and tests — like blood tests, urinalysis and ultrasounds — are routine, pain-free and absolutely beneficial.

Prenatal tests offer the most accurate view possible of your and your baby’s health, and can catch many pregnancy complications early on. Some prenatal tests could be life-saving, while others provide information that can tell you more about how your baby is developing, such as whether he may have a genetic condition.

Types of prenatal tests and screenings

Some of the tests that you’ll take during pregnancy will help your doctor monitor your health, while others will give you more information about your baby’s health.

Here are the different types of prenatal tests that can give you more information about your child, including their risk of having a genetic or chromosomal condition:

• Screenings. Prenatal screenings, such as blood tests, can help you identify the likelihood of a baby having a genetic or chromosomal condition, but they cannot actually diagnose the disorder. If the results of these tests indicate a high risk for an abnormality, your doctor may suggest a diagnostic test to confirm or rule out the finding.

• Diagnostic tests. If the results of a prenatal screening indicate an increased risk of a disorder, you’ll likely get a diagnostic test, like an amniocentesis or chorionic villus sampling (CVS), next. These tests will examine the chromosomes of your baby (either through a sample of amniotic fluid or cells from the developing placenta), rather than your own. These tests can diagnose some conditions with nearly 100 percent accuracy.

Prenatal screening and testing

Some prenatal screenings and tests are par for the pregnancy course, and offered to all pregnant women. 

Recommended Reading

Ultrasound During Pregnancy

Urine Tests During Pregnancy

The Nonstress Test During Pregnancy

• Urine tests. You started off your pregnancy by peeing on an at-home pregnancy test — so it’s only fitting that you’ll continue peeing in a cup at pretty much every prenatal visit. Why? Urinalysis helps your doctor or midwife check you for two potentially dangerous pregnancy complications: high blood pressure (preeclampsia) and gestational diabetes. Both are treatable, but can be dangerous if they’re not identified. The good news: Providing a urine sample is risk-free, so drink up before each appointment! 

• Initial blood work. At your first prenatal visit, you’ll roll up your sleeve for a blood sample, which will be tested for conditions that could affect your pregnancy and delivery. Specifically, your provider will check for anemia, along with your blood type, hCG levels (a hormone that’s produced by the fetus), immunity to certain diseases and Rh factor, which diagnoses Rh disease, another condition that can be easily managed as long as your provider knows about it in advance. You may also receive a screening for cystic fibrosis, Tay-Sachs, sickle cell anemia, spinal muscular atrophy, thalassemia and other genetic conditions, if you weren’t screened before conception.

• Pap smear. Your midwife or doctor might do a Pap smear (or Pap test) at your first prenatal appointment to screen for abnormal cervical cells. You’ll also likely be screened for sexually transmitted infections (STIs) including gonorrhea, syphilis, hepatitis B, HIV and chlamydia. If you test positive for a bacterial infection, your doctor will prescribe pregnancy-safe antibiotics for you and possibly your partner — because if you give birth with an untreated infection, your baby is at risk of dangerous infections too, including pneumonia.

• Genetic carrier screening. A carrier screening can reveal if you have a gene for (or, are a “carrier” of) genetic conditions such as cystic fibrosis or spinal muscular atrophy. Your doctor will likely take blood or a swab of saliva from the inside of your cheek and send the sample to a lab. The results will either be “positive” (meaning, you are a carrier for the condition) or “negative” (meaning, you aren’t a carrier for the condition). While the test can be done before you get pregnant, some women choose to have the test done during pregnancy.  

First trimester genetic screening and diagnostic testing

Starting around week 10, pregnant women can receive first trimester screening and tests for certain chromosomal conditions. If the screening results indicate that your baby may have an abnormality, you can receive follow-up diagnostic testing to confirm or eliminate the diagnosis.

By opting for early screening and testing, you’ll have more time to make medical decisions during your pregnancy and after delivery. 

• Noninvasive prenatal testing (NIPT). NIPT (i.e. a noninvasive prenatal screening, or NIPS) is a blood test that analyzes DNA fragments that are circulating in a woman’s blood (also called cell-free DNA, or cfNDA). The test, which can be done around week 10 of pregnancy, can screen for certain chromosomal abnormalities, including Down Syndrome, trisomy 18 and trisomy 13.

• Nuchal translucency screening (NT). The nuchal translucency (NT) screening is an ultrasound that’s performed around weeks 10 to 13. This routine test measures the nuchal fold, an area of fluid behind the baby’s developing neck. Babies with increased fluid and swelling in this spot have a higher risk of chromosome abnormalities, such as Down syndrome. The hormonal levels drawn at the time of the NT can also indicate an elevated risk of preeclampsia.

• Chorionic villus sampling (CVS). If an NIPT or NT shows that your baby has a higher than usual risk for certain congenital conditions, your doctor might recommend a diagnostic test called a chorionic villus sampling (CVS). This test will take a small sample of the placenta, which contains baby’s genes, and can confirm or rule out that your child has the chromosomal condition. CVS is typically done between week 10 and week 13 of pregnancy.

Second trimester genetic screening and diagnostic testing

The results from your first-trimester screening can be combined with others that are done during the second-trimester — including the quad screen and an amniocentesis — to give you a more accurate understanding of your child’s health.

During the second trimester, pregnant women also receive a glucose screening and an anatomy scan.

• Quad screen. The quad (or quadruple) screen is a blood test that measures four substances in a mother’s bloodstream: alpha-fetoprotein (AFP), a protein made by the baby; human chorionic gonadotropin (hCG), a hormone made by the placenta; unconjugated estriol (uE3), a form of estrogen made by the placenta and baby; and inhibin A, a hormone made by the placenta. The results, taken together, can determine the likelihood that your child has a neural tube defect or a chromosomal condition such Down syndrome or trisomy 18. The test is typically done between week 14 and week 22 of pregnancy.

• Amniocentesis. An amniocentesis, or “amnio,” for short, is a diagnostic test that can detect hundreds of genetic and chromosomal conditions, including Tay-Sachs disease and Down syndrome, as well as neural tube defects. During the procedure, which is normally done between week 16 and 20, a long, thin needle will be inserted into your abdomen and uterus, and a few tablespoons or amniotic fluid will be withdrawn. The fluid will be sent to a lab, and the results made available within one day to several weeks. 

• Anatomy scan. Given during the second trimester at around 20 weeks, the anatomy scan — also known as a level 2 ultrasound — makes sure baby is growing and developing as he should. During the ultrasound, the technician will move a wand over your abdomen to generate a 2D (or even 3D or 4D) image of your growing baby. She’ll also take baby’s measurements, examine his heart and organs, and check your placenta and amniotic fluid levels. And, unless you want to be surprised, you’ll also learn the sex of your baby during this scan. Some higher risk patients may be referred for an early anatomy sonogram at around 16 or 17 weeks. For high-risk patients, if there is an abnormality found, then they can make a decision to do an amniocentesis before 20 weeks.

• Glucose screening. A glucose screening is recommended for virtually all moms-to-be between weeks 24 and 28 of pregnancy. The test can detect gestational diabetes, a type of diabetes that occurs during pregnancy and affects an estimated 6 to 9 percent of all expecting women. For the test, you’ll drink a special sugary beverage that tastes like flat soda, then give a blood sample. If the test reveals that your blood sugar levels are higher than expected, you’ll take a second glucose tolerance test that involves fasting for at least 8 hours before drinking another sugary beverage and having your blood tested several times over a 3-hour period to confirm or rule out the diagnosis.

Third trimester screening and testing

Starting at 36 weeks, you’ll have weekly checkups with your doctor, which will continue until you go into labor. Unless your doctor has told you otherwise, you may only need to have one more screening: the group B strep test. Some women, however, may also need to have other tests, including routine biophysical profiles or nonstress tests.

• Nonstress test. If you have a high-risk pregnancy — for example, you have gestational diabetes or your baby is measuring small for his gestational age — or you have gone beyond your due date, your doctor may want to monitor his heart rate with a nonstress test (NST). During an NST, a fetal monitor will be placed around your belly for about 20 to 40 minutes. If the results are “reactive,” your baby’s heart rate went up occasionally, which is normal. If the results are “non-reactive,” your baby’s heart rate didn’t go up enough times, and your doctor may recommend follow-up testing with a biophysical profile.

• Biophysical profile. If the results of one test, such as the nonstress test, are unclear, doctors sometimes order a biophysical profile (BPP) to determine if labor should be induced. The test uses an ultrasound to measure your amniotic fluid levels and evaluate your baby’s heart rate, movements, tone (i.e. the ability to flex a limb) and breathing (or, if he takes “practice breaths” of amniotic fluid). If the results are normal, your baby is likely fine, but you may need to have another test later on. If not, you may need to deliver early.

• Group B strep test. About 25 percent of women have group B strep, a type of bacteria that’s found in the vagina and rectum. Group B strep is harmless to you, but it could cause an infection in your baby when he’s exposed to the bacteria during childbirth. Your practitioner will offer this risk-free test toward the end of your pregnancy, usually around week 36. It involves swabbing your vagina and rectum during a pelvic exam. If you do have group B strep, you can take antibiotics to protect your baby during labor.

Questions to ask about prenatal testing

Thanks to major medical advances over the past few decades, it’s now possible for parents to learn their baby’s risk for a number of medical conditions as early as a few months into the pregnancy.

If you’re thinking about being screened for chromosomal disorders, here are a few questions to consider:

1. Which prenatal genetic screening tests do you recommend for me and why?

Your doctor will likely perform a preliminary chromosome screening for some disorders as part of the first trimester blood work. She may also offer more advanced screening, like NIPT, for patients whose babies have an increased risk for chromosome disorders. Those include moms who are 35 or older, moms who previously had a child with a genetic disorder, or those with a family history of certain conditions. You should ask about all your options.

2. Will my insurance cover this test?

Insurance companies are covering more essential prenatal care than ever before. If you have certain risk factors for chromosome abnormalities and your doctor orders a test, your insurance may cover part or even all of the cost. If you’re unsure of whether your insurance company will cover a prenatal screening or diagnostic test, call your insurer first.

3. Are there any risks?

Physically speaking, screenings that only require a blood or saliva sample are practically risk-free, but some diagnostic tests, such as amnios, carry a small risk of miscarriage. More commonly, undergoing genetic and chromosomal tests can cause anxiety and emotional challenges, regardless of the results.

It may help to speak with genetic counselor before having a prenatal test; he or she can help you weigh the benefits of the test with the downsides. 

4. What conditions are — and aren’t — screened by this test?

Some prenatal screenings, like quad screenings and first trimester blood work, assess a fetus’ risk for chromosomal conditions. More advanced technologies, like NIPT, can determine a fetus’ risk of up to hundreds of other disorders, including Turner syndrome (a female baby who’s missing an X chromosome) and triploidy (a baby who has an extra set of chromosomes in each cell).

But not all screenings and tests look at the same chromosomes, which means that they aren’t all testing for the same conditions. And chromosomal screenings can’t assess your baby’s risk for genetic disorders like sickle cell anemia or neural tube defects like spina bifida; congenital heart defects (which can be identified with a nuchal translucency screening); or developmental disorders.

In the end, you may opt for a combination of screenings, which can take place during different phases of pregnancy.

5. How accurate are the results?

Not all screenings and tests have the same level of accuracy, so it’s important to discuss how precise each recommended screening is at assessing your baby’s risk of a chromosomal disorder. NIPT, for example, can tell you with over 99 percent accuracy whether your child is at risk for having Down syndrome, while quad screenings are only about 80 percent accurate.

6. What are my options if my test results indicate a high risk for a genetic or chromosome disorders?

Your doctor likely has a standard protocol if a screening shows a mom-to-be is at high risk for a chromosomal disorder, so he or she will know how to help you understand the next steps before you even get started.

When a prenatal screening indicates that your child is at risk for a genetic or chromosome disorder, your doctor may suggest a diagnostic test, such as an amnio or CVS, to diagnose the condition. If a diagnostic test yields a positive result, your doctor might refer you to a genetic counselor, who can talk you through all your options in more detail. 

Your practitioner may recommend a specialized birth facility for labor and delivery that can better address your specific needs or recommend medical interventions which, if performed immediately after birth, can improve your baby’s quality of life.

Preparing yourself for prenatal tests

Bottom line? While testing can be stressful, information can be powerful — especially when it comes to you or your baby’s health. The results of all these tests will allow you to make better health care decisions, and in many cases, get treatment to solve or manage unexpected conditions.

You can ease the stress you might feel by talking openly with your doctor or midwife. Ask what tests and screenings they plan to conduct and when. Make sure you understand which ones are routine and which ones are optional (or “opt-in”). Although most are covered by insurance, some aren’t if you’re not considered high-risk, so get that information up front.

And don’t be afraid to ask plenty of questions at every prenatal visit. Your practitioner has done these tests a thousand times and may accidentally forget to go over all the details. Speak up and ask what a screening is for if you’re confused, how it will work, any risks associated with it, and when you can expect results. Your relationship with your doctor or midwife should be a partnership, so take an active part in it. 

How to Share a Special Needs Diagnosis with Friends and Family

by Amands Cunningham August 18, 2018

Sharing the news with friends and family that our daughter was born with Down Syndrome was a task that filled me with anxiety. In the beginning, I just wasn’t ready to talk about it.  I needed time to get my mind right and understand our new reality.

Looking back, I’m in some cases happy with how we shared this news, and in other instances, I wish I had gone about the process differently.

Following Rory’s birth, as family members came into the hospital to visit, I chose not to say anything. Whether because we didn’t have confirmed test results yet or because we were simply in shock and denial, both my husband and I opted not to mention it at all.

No matter the motivations, though, I still smile as I look back at those photos of our first few hours in the hospital with family and friends. I’m glad that they all had the opportunity to meet Aurora first—and not her extra chromosome.

If you’re currently navigating how to share your child’s special needs diagnosis with friends and family, here are a few things to consider before you begin sharing the news:

1. Do you feel emotionally ready for questions?

If not, keep this in mind when preparing to share the news. If you don’t want to talk, be open and share this in your communications or direct them to someone who can give the details you don’t have the ability to share at this time.

2. Set rules for yourself.

Personally, it was very important to me that the news of this diagnosis didn’t change how we celebrated our girl. To keep this value at the forefront, I had one important rule for myself: I’m not going to hide my daughter.

That boundary set early on helped me overcome fears as I decided when and whether to take public family outings and post photos on social media. If I was avoiding something out of a desire to hide Rory, I knew that I had to make a different choice.

What are some clear rules you can set for yourself so that you don’t fall into behavior you might look back and regret?

3. Do you have key people you feel should hear the news in person/first?

My parents, sibling, grandparents and closest girlfriends were on my list. I’m not going to lie this was hard. But, these intimate conversations were also life-giving. They will be in my heart for the entirety of my life. I was met with love and support. I didn’t start this train of face to face conversation until Rory was close to 8 days old and we were home. I was honest about my fears, what I needed from them and how I hoped they would love my daughter.

4. You don’t owe the world an explanation.

In the age of social media, public announcements are hard to avoid. In my case, I’d been blissfully sharing my pregnancy journey for 9 months with friends and family online. When Rory arrived with this extra news I had a ton of internal conflict regarding making a public statement about her diagnosis or not.

It gave me a lot of anxiety. It took me close to six months to finally put a name and statement to what we had been walking through. You don’t need to label your circumstances until you feel ready to do so. My “rules” came into play on this one. I wasn’t going to invite the general public into this personal moment until I could share our story in a positive light. How could I expect them to not feel pity for us if I was pitiful when telling them.

5. When developing your announcement think about how you wish you could have met your child or heard the news.

You will never get that moment back, but sharing your baby in the light you wish they would have been introduced to you is empowering. Remember, baby first, diagnosis second. Heck, send out a normal birth announcement, just them with no diagnosis attached to it. I was in a haze of shock and never sent one out for Aurora. I have regret over this now that we are out of those heavy days.

There is no right way to do this. You've got to put your emotions first, your family first and your little one first. The good life isn't over. There is joy in this journey. 

5 Tips for Finding Your Tribe as a Special needs Parent

April 14, 2017

Before we found our people, I would look with envy at blog posts and social media updates about how important your tribe is as a special needs family. I hadn’t found mine yet. How does one find their tribe of people?

Over the past year, with our second child receiving an autism diagnosis and C starting school, I have never been so thankful for the tribe of advocates, therapists, educators, and caregivers that we have established. I truly do not know what our family would do without them.

I want every parent to feel supported in their community. Here are some tips for finding your tribe of people to help you raise your awesome child(ren):

CALL DIFFERENT PROVIDERS

You will likely be able to tell through a conversation if this therapy center/in-home therapy company has values and goals that align with yours. I was happy with my initial conversation with our children’s therapy center; but watching C get excited about the toys and interact with his potential therapy team made me feel comfortable.

REACH OUT TO A LOCAL SUPPORT GROUP

Does your local area offer a support group for parents? Try it out. If it’s not for you, there’s no pressure to return; but you may be surprised by a welcoming environment that you can’t wait to go back to!

PARTICIPATE IN A LOCAL EVENT OR AWARENESS WALK

Local events and awareness walks are great self-care opportunities, because you’re getting out to enjoy an activity. The added bonus is that you will meet other families like your own!

JOIN A LOCAL FACEBOOK GROUP TO CONNECT WITH OTHER FAMILIES

The beauty of a Facebook group is that you can comment as actively as you’d like. Read conversations, ask for advice, seek support, offer your insight. Connect with others as your schedule allows, from the comfort of your home.

RESEARCH LOCAL SCHOOL DISTRICTS

If there is school choice in your area, or you have the opportunity to move to a better district in your area, it may be beneficial to research the special education programs offered by local school districts. I realize this isn’t an option for everyone. We happened to move last year, and chose our home based on the school district’s special education ratings and our commute to therapy.

Finding a support team is an important piece of your family’s well-being and success. I hope that you will find an amazing group of people in your community. If you’ve found your tribe or have tips to add, please share them in the comments!

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What Babies Enjoy Most When They're In The Womb

A mother and a baby have a strong connection, even before the baby arrives into this world. This is because the baby develops certain likes and dislikes while still being in the mother’s womb. While the rest of the world may not have the slightest idea about it, somehow only the mother gets a hint of it. At times, it is more than just a hint. It kind of becomes a secret language between the baby and mother, which only both of them understand. And, of course, nine months sure is a hell lot of time to try and develop an understanding with the little being growing inside. While a mother looks forward to the day when she’ll finally get to hear her baby babble, the baby does make sure to let her know what he/she likes the most when still in the womb. Here are a few such things:

How to Find Local Resources for Your Special Needs Child

Note: I may earn money or products from the companies, products, or links mentioned in this post.Recently, I received this question from a friend:“How do you know where to find resources for a special needs child and where do you start? I have only one special needs child, however finding therapies and care for him is proving difficult. He only receives therapies once a week (PT, OT, and ST), but we are still very new in our special needs journey and it’s overwhelming trying to find the help that we need. After he turns three, his therapies will stop unless we enroll him in school. It’s hard to know where to start!” – SarahI was thrilled to receive this question because it’s a great one! After having two special needs kids that I’ve had to find multiple resources for in multiple states, I like to think I’m a bit of an expert in this area.It can be tough trying to find the best resources in your area, but as a mama and an advocate, you’re doing a great job starting here and now.

Finding Resources for the Special Needs Child

1. Start With the Source: Other Special Needs Parents.

As a military family who has moved around a lot, I have found that the best way to find local resources for a special needs child, is to find other special needs parents who already live in the state or city you are currently in or going to. Depending on the needs of my child, I do a Facebook search to find other parents who have a special needs child in the area I’m looking for.Word of mouth is powerful and asking parents who have gone through the same things as your family and who understand what it’s like to try to find the best resources for a special needs child can be invaluable.

• See my list of 60+ Facebook Groups for Special Needs Families!

2. Use Google Search.

 The same tip I just gave you can be used in Google search as well. Use those keywords to help you find resources in your area. If you want to get more specific you can google terms like, “Therapists in Colorado Springs,” or “Pediatric Physical Therapists Colorado Springs.If the places you find have a place for parents to read reviews, read those carefully as those are going to be as close as you get to word of mouth and parent advice.

3. Military Families Can Ask Their EFMP Coordinator.
If you’re a military family making a move or PCS, the EFMP program coordinator at your new duty station should have a list of local resources. They also should be able to tell you which doctors, therapists, and hospitals, they refer out to. Sadly, I’ve found that not every EFMP program is the same, so if you find that they are not able to help in this area, try one of the other suggestions on here!

4. Ask Your Insurance Company.

Many insurance companies will have a list of providers that are covered and that you can use. You can call your insurance company or visit their website to find a list of providers. Once you find the list, start researching the different resources and reading the reviews to find the perfect therapist or doctor for you!

5. Use Early Intervention Services 

Did you know that every state has Early Intervention programs that provide in-home therapy to children birth to age three who need it? While every state’s programs will vary and some will be better than others, this is a great way to help your child have a great start working on any of the delays he or she may have. I believe the majority of these programs provide free therapy or discounted therapy based on income.Did you know that every state has Early Intervention programs for children birth to age 3?CLICK TO TWEETFrom Understood.org:

• “In every state, very young kids can get early intervention help if they have developmental delays or specific health conditions.

• Early intervention helps children meet developmental milestones through a wide range of services.

• An evaluation can confirm whether your child is eligible.”

These programs will help create an IFSP (Individualized Family Support Plan), which is similar to an IEP that a special needs child would receive in school. Having an IFSP will help make sure your child has the support they need and it will help them to transfer over to a school IEP smoothly once they turn three.

• See: Why Early Intervention is the Best Thing You Can Do for Your Child

9. Ask Your Case Worker or Social Worker.
A lot of special needs families will have a case worker or social worker who is helping their families. If you are a military family, you can ask your base pediatrician or EFMP program coordinator to be assigned one. If you do not have a case worker or social worker, ask around about how you can get one.Usually, you can ask your insurance company to assign you a case worker or you can ask your child’s pediatrician or local children’s hospital for a referral to see a social worker to talk with them about resources in the area.

You Found Resources for Your Special Needs Child, Now What?Once you have a list of resources for doctors and therapists you want to check out, do you know what to do next?

• Study the Reviews. I know I’ve already mentioned this several times, but asking around or reading the reviews will be so helpful in narrowing down the list or resources you have.

• Call the Potential Company or Therapist. When you’ve chosen a few resources you want to look into more, call and ask to talk to a therapist there. Ask if you can schedule a time to go in and look around and see what they offer.