The Mom Crowd

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?

I’m back!  My husband and I recently adopted a little girl from Ukraine and I took some time off of The Mom Crowd to focus on our new little one. I have not experienced anything in my life more rewarding than inviting this precious angel, who was abandoned, to be a part of our family.  The fact that she will not die in an orphanage without knowing what love is makes me wish for others to consider adoption!

Adding a 15 month old to your family is a little different than adding a newborn to your family!  Reese joined our family with an already somewhat formed personality.  The only language she understood was Russian and she has lived her entire life in an orphanage sharing 2-3 caregivers with 15 other children 24/7. So, the adjustment after an adoption has some unique challenges that adjustments immediately after childbirth do not have.

Our adjustment and Reese’s adjustment since coming home from Ukraine has gone remarkably well.  My older two children did better than I could have imagined, with very minimal jealousy from my two year old son as he relinquished his role of being the baby of the family.  Most of the adjustment issues I was prepared for with Reese became non-issues and I have spent the last month in awe at how {dare I say} easy this transition has gone.

I think the research I did on bonding and attachment issues in orphans really helped prepare us all for this transition.  It is not realistic to expect an orphan to feel an instant love for their new family and many times new parents do not feel an instant bond with the child they adopted.  I did not have the expectation that from day one, she would feel bonded to us and even us to her.  My love for her started before she came, but my bond with her may be something that I would acquire over time and not necessarily instantly feel.

Reese’s personality is pretty laid back, so she ended up being content with our routine and family dynamics quickly.  A lot of orphans are not comfortable with too much touch because they are not used to it.   I was prepared to teach Reese to enjoy being held, but there was no teaching necessary…she ate it up from the start!  The one place she is aversive to touch is her face, so we are sensitive when we have to wipe her nose.  While it was good that she loved being held from the beginning, she did not like being put down.  Reese had a hard time with making eye contact with us the first week she was home.  However, that changed pretty quickly. We also had to work very hard for her smiles and giggles in the beginning.

Even though she had very little difficulty in adjusting to our family, I am still amazed at the changes in her over the last month!  After about four weeks, it became quite obvious that she knew we belonged to her and that she was a part of our family.  Around the same four week mark, she began laughing and smiling much more, did not require being held all the time, and is even doing better when I wipe her nose.  It is hard to put into words, but she obviously feels very established in our little family now and it brings me so much joy!  We are all used to our “new normal” around here.  The only thing I am still getting used to is the logistics of transitioning from place to place with three kids rather than two. Getting in and out of the car with three kids is probably not my favorite thing to do…

The question my husband and I had before we met this little girl was whether we could truly love her as much as our biological children.  The answer is aboslutely “YES!” and it happened quicker than we thought!

3.31.09. Today is the first ever “Spread the Word to End the Word!” I am excited to celebrate this awesome day with all of The Mom Crowd readers! As you know, the word “retard” is abused and misused by so many people. Most people use the r-word as slang or tongue in cheek, however, it is disparaging and hurtful to the millions of people with intellectual disabilities, their friends, and their families.

Spread the Word to End the Word is a campaign created by young people with and without intellectual disabilities to create a societal taboo on the r-word. The Special Olympics and John C. McGinley (Dr. Perry Cox on Scrubs) are endorsing and publicly representing this campaign. Rallies are being held in work places, high schools, middle schools, elementary schools, and colleges around the world. The state of Delaware will be asking all 40,000 high school students to pledge to not use the r-word in their vocabulary.

I challenge you to not just roll your eyes thinking this is yet another political correctness movement. I challenge you to hear the words of those with intellectual disabilities, their friends and their families. I challenge you to remove the word from your language that destroys the dignity of so many individuals in our world. I challenge you to “Spread the Word to END the Word” today and tomorrow and the days to come!!!

Any mother would be proud to be Soeren Palumbo’s mom! This kid has defined why the r-word is so offensive. I hope you will watch this high school student’s amazing speech!

I will close this with a personal message from Dr. Cox err…John C. McGinley:

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