The Mom Crowd

After 2 years of blogging, today is McKenna’s last official post on The Mom Crowd. We have 5 writers for this blog and McKenna is my first co-writer. She is also a co-founder of The Mom Crowd. I remember having an “official” meeting in her kitchen back in the summer of 2007 to discuss post ideas, logo themes, and vision casting for this site.  We also created the short-lived “The Mom Crowd Show!” together.  Like official reporters we ran around the San Antonio Baby Expo together with a camera and microphone interviewing the representatives at each booth. It was so much fun!

I am certainly going to miss McKenna’s insight into the world of special needs and her positive outlook on life. I am grateful that we got to walk through her journey to adopt Baby Reese from the Ukraine together. McKenna will be spending this semester caring for her 3 little ones, taking a full schedule of college courses, and helping with ReecesRainbow.org. We will still see her around here as a faithful reader and possibly with a guest post from time to time. Best wishes to you and your family.

In honor of McKenna’s last post, I asked to pick her favorite 5 posts.

McKenna here.    I am really going to miss writing for The Mom Crowd.  I have loved posting on this blog and have enjoyed the companionship, support, insight from all the other moms who participate in the discussions at The Mom Crowd.  Reading through my old posts over the last two years brought up so many memories!  It’s been amazing to watch a blog develop from discussions with Amanda at my kitchen table and at her neighborhood park to such an active, insightful, encouraging blog for moms. 

Alrighty, my most favorite posts:

1. The Mom Crowd Shows - Shooting these episodes was so much fun!  I would do this again in a heart beat!  I loved our one-man camera crew, making my living room and later Amanda’s living room into a studio, and the funny out-takes.  Oh, and remember not having a charged battery downtown and running and trolleying all over downtown San Antonio, Amanda?  Good t imes!  Man, my hair is longer!!  Oh, on the third episode, there’s a great discussion about using a mirror to watch your child’s delivery…too many puns to count!    These shows were way too fun!
2. When You Find Out Your Baby Has Down Syndrome - One of my favorite things about writing for The Mom Crowd was documenting some of my life experiences as a mommy.  I have also been so happy that my life experience parenting children with health issues and special needs has encouraged other mommies in similar situations with their children.  I love the comments that pop up on this post years after I’ve written from people doing google searches.  And I love that I have these emotions docuemented for myself. 
3. Ready Set Sign - As a speech pathology student, I have a passion for helping children learn to communicate.  I am a strong believer that every parent should use the valuable resource of signing with their children when they are young!  Signing with my girls has been one of the most valuable resources for us as parents. 
4. Teaching Your Children and Yourselves How to Live Within Your Means - I have many posts that I’ve written for The Mom Crowd with advice and suggestions I struggle to take.  Writing posts like this one have been helpful for myself as I try to become a better mom, wife, and child of God.   
5. Censoring Disney? – Sometimes, writing for The Mom Crowd was difficult because I did not feel as though I knew the right answer to issues I struggled with as a mom.  This post was one of those posts where I learned so much from the discussion following the post. So many readers of The Mom Crowd have more good ideas than anything I could find online as I researched some of my posts.   

I’m sad to not be a regular contributing author of The Mom Crowd, but excited about all the things I have going on in my busy life!  I’ll be around…it’s not that easy to get rid of me! 

On Wednesday, Christy posted about secondary infertility.  It was a deeply personal topic for her and one that greatly encouraged others.  I was encouraged by Christy’s gentle reminders of what to say (and what not to say) if I ever find myself conversing with a friend in that position.  Thank you, Christy (and dear readers)!

Ironically, Wednesday was also the day that one of my friends began the in vitro fertilization process for the first time.  I will call this friend Allison.  Naturally, my heart thought of Allison and her husband as I read Christy’s words.  Infertility has long been their battle, and IVF is a huge step for them. 

One thing I love about my friendship with Allison is that we are completely different from one another.  She’s an introvert; I am not.  She is an engineer; I most definitely am not.  She is hard to get to know; I am not.  She doesn’t like “The Office” (and oh, how I do).  You get the idea.  I think it is from sheer perseverance on both our parts that we have become close at all. 

It was nearly a year into our friendship when she revealed to me the depth of her sadness about wanting to become a mother.  I had always wondered why this fantastic couple didn’t have children, but I didn’t want to pry.  The day Allison started to open up to me, I felt that she was handing me a fragile part of her heart, and I needed to care for it responsibly.  I can recall few times when I have been so cautious with my words. 

Allison and her husband talk with others about their infertility issues as little as possible.  They don’t like being asked, on a regular basis, about “how things are going” or “pregnant yet?”  They know their friends and family have the best of intentions, but the constant questioning irritates and saddens them.  They have even refrained from telling certain family members about the IVF process, as a measure of emotional protection for themselves.  Not only do they dislike having to give detailed updates on a regular basis, they feel they are disappointing others when nothing changes.  They are so consumed with their own worry, the idea of letting too many others in on it would put even more on their shoulders.

Over the past several months, I have learned from Allison that she desires prayer and concern from others, but she doesn’t want conversations to revolve solely around her infertility.  She desires her friends to check in occasionally.  To ask first if it’s something she is up to talking about.  To give hugs generously and to use words sparingly. 

These are lessons I think a lot of us well-meaning mothers could use.  I hope Allison’s story will give you strength to support someone you love in a similar situation.

Have you ever been on either side of this process, either as the friend or the woman pursuing IVF?  What were the challenges you faced in relating to the other?  Is there a right thing to say?

photo courtesy greekadman

I began motherhood as a parent of a child with special needs.  I really don’t know what parenting is like without having children with medical concerns and special needs.  What I do know is that I view motherhood as one of the most beautiful gifts I have received.  My children are beautiful creations and through them God has placed some amazing people in my life.  My dearest, closest friends are friends I have made or become closer to after becoming a mother.  I often have struggled with feeling as though I have been loved much more than I am capable of reciprocating because these people in my life can love like no one else I’ve ever met. 

I am sure it can be intimidating if one of your friends or someone you know has a child with special needs.  You may not know how to approach them or may feel awkward around them or their child.  When that mom talks about frustrations that are bigger than anything you’ve dealt with as a mom, you may not know how to respond to them.  As the parent of children with special needs, I’d love to share with you some ways to support, encourage, and deepen your friendships with moms of children with different needs than your children. 

Allow the friendship to be two-sided

• It is hard for me when a gal pal makes the entire friendship about my needs and doesn’t allow me to encourage and support them.  My closest friends are friends who talk to me about the things happening in their lives without fearing that their drama is less important than mine.  Don’t hold back discussing your life with your friend because you are afraid that they have more important issues than yours to talk or think about!  Allow them to comfort and encourage you!

Ask questions

• If you do not understand what their child’s needs are or want to know about something, do not be afraid to ask.  Most parents would rather you ask questions than make an assumption.  For example, when my daughter had feeding issues at birth requiring a feeding tube that most people had never seen, it was relieving to me when someone would ask me what the tube was.  I felt like most people were scared of the odd tube coming out of my newborn baby’s nose and it felt good when people would approach me and ask what it was or why she had a feeding tube.  
• Be slightly careful with advice or suggestions though.  Even if you have experience with an issue the mom is dealing with, don’t be too forceful with your input or opinion about the situation.  They likely have a bunch of specialists, therapists, and mother-in-laws helping them with the issue and probably forcing their own suggestions on their shoulders.  Just like with all your mom friends, they are not going to share the same parenting philosophy as you on every issue.  And the definition of their issue may be different than in the world off the typical developing child.  For example, with a child with medical or developmental issues, they may not be able to use the “he’ll eat when he’s hungry” approach with their picky eater.  However, don’t allow yourself to cross over from being sensitive with advice to being afraid to talk about their child’s struggles.  It’s ok to suggest anything, just without becoming forceful or overly opinionated. 

Pay attention to what is said

• Write down important days coming up  in your friends’ life.  If they have a special education meeting with their school, remember the day so you can follow up with them about how it went.  If they mention a week full of doctor’s appointments, ask if their other children can come over to play while they’re at the appointments.  It always feels good when somebody remembers what you tell them.  

Allow them to be negative and vent

• It is hard to maintain a positive attitude about the struggles involved in raising a child with special needs.  When your friend vents, pouts, cries, or is ultra negative about a situation, give them your ear and shoulder.  Try not to assume that they are overall unhappy about their lives though because they have these bouts of negativity.  I get frustrated whenever I see my OB/GYN doctor because he saw me at my very worst when my first child was born with Down syndrome and my second child was born with a heart defect.  I always feel as though he doesn’t believe me when I tell him that life really is going great because he will always see me as the mother grieving for the children she expected to have, but didn’t.  I wouldn’t trade my kids for the world and even though I pout and become very negative about certain health issues they face, it is freeing to know that I have a few ears and a few shoulders who can handle that crying and even whining knowing how much I love my children.  Those people have even told me I’m very positive about the situations I’ve faced, which shocks me because they get to see the nasty side of me during hard and scary times. 

Remember that they’re moms just like you

• Talk about the things you talk to other moms about.  Do not feel intimidated because their parenting experience is a little different than yours.  Invite them to playdates.  If they’ve mentioned that their child has sensory issues and does not like over-stimulating environments, plan a quiet playdate at your house.  Ask them mom advice.  Don’t assume that they are too tired for a phone call or a moms night out.  In fact, plan a time for you to get together sans kids! 

All of these suggestions have come from being on the very wonderful receiving end.  I hope that you will reach out to a mom you know who has children with different needs than your children!

Health insurance is a hot topic in the US right now.  While congress debates the topic, I thought I’d share an option some families have that many are unaware of to insure their children.  Most people are aware of Medicaid, a government run health care option for low income families.  Many people do not qualify for Medicaid due to the income and financial guidelines.  However, every state in the US has ”Medicaid Waivers” that allows certain individuals who do not qualify based on financial criteria to participate in Medicaid through these waiver programs.  Typically, for a child to qualify for Medicaid, the government will evaluate the family’s income and assets to determine eligibility.  Medicaid waivers evaluate the individual’s income and assets to determine eligibility and does not consider the parents’ income and assets.  In other words, my daughter qualifies for Medicaid through a waiver based on HER income and assets and our total family income and assets are not factored into her eligibility determination.  The waiver is offered to different populations of people.  Some state Medicaid waivers are offered to individuals based on their intelligience quotient.  Some state Medicaid waivers are offered to individuals based on their medical issues and health.

Every state is very different in how they run their Medicaid waiver programs and every state offers different benefits outside of Medicaid to their waiver participants.  So, to keep my dear readers from becoming too confused, I am going to share with you how one Texas Medicaid waiver works.  Keep in mind, in the state of Texas, there are actually many different waiver programs that all are slightly different from one another, however a basic understanding of one of these waivers will give you a general idea of how Medicaid waivers work.

My daughter is on the Medically-Dependent-Children’s-Program Medicaid Waiver (AKA: MDCP).  When she was a few months old, I put her on an interest list, which is basically a waiting list to be evaluated for eligibility for MDCP.  It was very easy to add her to the interest list and I called religiously every month to see where she was on the list.  A month before her third birthday, I received a phone call from MDCP stating my daughter had come up on the interest list.  We set up an evaluation in my home and she qualified for the MDCP Medicaid waiver due to her health issues and medications.  We chose to keep our primary health insurance for her and she started receiving Medicaid as a supplemental health insurance, so we no longer had to pay for her deductibles, co-pays, prescriptions, cost-shares, or any other health related expense.  Her MDCP Medicaid waiver also brought along several other benefits, including:

• MDCP pays a portion of our primary health insurance premium.  It is cheaper for Medicaid to be a supplemental health insurance, so as an incentive for us to keep her on our family’s primary health insurance, we are reimbursed a portion of our monthly premiums.
• MDCP provides respite.  Due to her health care needs, she needs to be left with caregivers who are aware of her health issues, medications, and special needs.  MDCP pays a person who we have hired to take care of my daughter in our home.  This has been a huge blessing for my family.  We were able to hire a person we trust to take care of her when we needed someone to watch her and are confident that if she needs any medical attention, that person will be able to take the proper steps necessary.
• Her waiver provides medical equipment and supplies that are not otherwise covered by health insurance.  My daughter is almost five and is still not potty trained.  Her waiver provides diapers and supplies for her.
• Her waiver provides transportation or mileage reimbursement for the many doctor and therapy appointments she has every week. 

A lot of states, but not all, have waiting lists for their Medicaid waiver programs.  To see what types of Medicaid waivers are offered in your state, click here: http://www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/08_WavMap.asp  When you click on your state, a list of waivers will pop up.  The state of Texas has 25 waiver programs.  You may need to scroll to another page to see all the waiver programs in your state.  When you select a program, you will have the option to download the very long and confusing program description.  I suggest, instead, contacting or looking up your state’s Department of Aging and Disabilities website to find more information (in layman’s terms) about your state’s waiver programs and process of applying.  Medicaid waivers can be very difficult to navigate, but very beneficial to families who have children with a lot of medical issues or families who need respite care due to their child’s higher level of needs.

Until recently, I assumed that the divorce rate among parents of children with special needs, including Down syndrome have a higher divorce rate than parents of children who do not have special needs due to the additional obstacles these parents face. I was surprised to learn that, in fact, parents of children with Down syndrome have a lower divorce rate than parents of children without special needs. In my own marriage, I can see how having Darah has strengthened my relationship with my husband. She is an absolute joy to parent and watch grow up.  Neither of us could have ever dreamed that we would have this much love for someone.  Our perspective on life is drastically different than what is likely would have been had we not had a child with special needs.  We appreciate the small things and have overcome very big things since Darah has joined our lives, which has definitely strengthened our relationship.  Truth be told, having a child with Down syndrome has most certainly added stress to my relationship with my husband, but we both hands-down agree that the most stressful season of our relationship were the colicky days of our typical developing son. 

This article discusses research performed at Vanderbilt Kennedy Center. One theory in the article as to why the divorce rate may be lower among parents of children with Down syndrome may be due to the “Down syndrome advantage.” Meaning, children with Down syndrome have easier behavior than typical children and that parents of children with Down syndrome are often older, more educated, and married before having children.

I disagree with their theory.  This article isn’t accurate when they say that most children with Down syndrome are born to older parents. Actually, most children with Down syndrome are born to parents UNDER the age of 35. This is a very common misconception, even misunderstood by some physicians. While it is true that women over the age of 35 have a higher chance of having a child with Down syndrome, the pregnancy rate every year after age 35 decreases exponentially compared to the pregnancy rate before age 35. So, if you consider that most children in general are born to women UNDER 35 years old, there is going to be a larger pool of children born with Down syndrome in that population, due to sheer numbers. In other words, if a 49 year old woman has a 1 in 10 chance of having a child with Down syndrome, but it’s difficult to find ten 49 year old women having babies.  If a 26 year old woman has a 1 in 800 chance of having a child with Down syndrome, it is pretty easy to find 800 24 year old women having babies.  {I hope that makes sense!} 

I have my own theory on why the divorce rate is lower in parents of children with Down syndrome. If you consider the fact that in the U.S., more than 90% of babies who are prenatally diagnosed with Down syndrome are aborted, most babies born with Down syndrome are born into families who either refused prenatal testing because it did not make a difference to them or learned of their child’s diagnosis prenatally and chose to give that child life regardless of their number of chromosomes.  I believe that their approach and attitude about raising their children is what positively influences their marriages.  My theory is consistent with this research findings that parents of children with special needs other than Down syndrome actually have a higher divorce rate than parents of children without special needs.  Most other serious congenital issues are not detected prenatally as often as Down syndrome.  I believe that once autism and other congenital issues are able to be determined prenatally, our population is going to sadly become a lot smaller.  Most people are unaware of the waiting lists in the United States of people who WANT to specifically adopt a child with Down syndrome and other special needs.  Of course, that is my own personal theory. I’d love to hear yours!

Are you surprised to learn that the divorce rate is lower among parents of children with Down syndrome?  Why do you think the divorce rate is lower among parents of children with Down syndrome?