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First Comes Love, Then Comes Marriage: Should Special Needs Couples Have Babies?

First comes love, then comes marriage, then comes baby in a baby carriage. Baby Carriage

That is the rhyme I recited as a little girl. I used these words in my neighborhood and on the playground, taunting friend and foe. I grew up believing that life happened in this order.

But what if the couple that falls in love and marries is special needs? Can they procreate? Should they?

The answer to the first question is yes, many special needs couples have the physiological capabilities to make babies.

The answer to the second question isn’t so easy.

My daughter married her long-time boyfriend two weeks ago. I’d jump over the moon (and back) if the next verse of that rhyme could realistically unfold and Lindsey could conceive a baby. Every woman I know who has been granted grandma status, says, “Being a grandmother is the greatest gift ever!”

Nick And Lindsey Sitting On a Bench On Their Wedding Day
Nick And Lindsey On Their Wedding Day

At Lindsey and Nick’s wedding, we displayed baby pictures of the bride and groom. Both infants sported round, bald, heads with gummy grins. It stands to reason that this newly united duo would produce an adorable, bald, rounded-headed clone. I’ve overheard their conversations about babies and how they’d love to have a little boy, or a little girl. But truthfully, could they properly care for an infant, a toddler, a child?

Years ago, sometime after Lindsey was diagnosed as mildly mentally challenged, I read an article that surprised me. Unless my daughter’s disability was the result of a genetic abnormality, it was likely she would deliver a mentally healthy child. Doctors didn’t believe that her diagnosis–unidentifiable syndrome–fell into the abnormal genetic category.

In the 2001 movie, I Am Sam, a mentally challenged man fathered a healthy baby girl, but lost custody when she was seven. Sam fiercely loved his child. But love was never the question. The concern was whether or not he could properly care for her. At seven, she had already outpaced many of her father’s mental capabilities. Ultimately, Sam finds a way (due to friends and supporters) to be the dad in his daughter’s life.

Rachel Randolph of The National Resource Center For Foster Care and Permanency Planning created an information packet: Parents with Mental Retardation and Their Children.

Children of parents with intellectual disabilities are at-risk for developmental delay, psychosocial retardation, and behavior disorders (Feldman, 1998;Feldman& Walton-Allen, 1997; Garber, 1988; Gillberg & Geijer-Karlsson, 1983; Reed & Reed, 1965).

In other words, mentally healthy offspring born from mentally challenged parents would be more likely to suffer from environmental disabilities than intellectual ones. Many mentally challenged parents don’t have enough knowledge or skills to stimulate their children so they will flourish.

Randolph’s report stated that children of special needs parents have suffered from the following: (a) untreated diaper rash; (b) malnourishment (due to improper feeding techniques, formula preparation, and/or nutrition; and (c) gastrointestinal infections (due to poor or absent baby bottle cleaning and sterilization techniques). And these are only a few of the complications that could occur in the first months of a baby’s life.

My thirty-two year old daughter has essential tremors. Her hands, arms, and head shake. This hinders many aspects of her world: she has difficulty coordinating a knife and fork to cut meat; she prefers to drink all liquids from a straw; her written correspondence looks like a preschooler’s. Twelve years ago, when I first broached the possibilities of motherhood with Lindsey, she said, “I could love a baby, but I might drop it.”

I worried about that too. But I also feared Lindsey’s limited reasoning abilities might prevent her from properly caring for a child. Randolph’s report confirmed my concerns:

The children are endangered when, for example, the parents do not know how to hold or bathe the child safely, make the home environment safe, provide emergency first aid, or when to take the child for medical treatment…

Just like I Am Sam, many parents in these case studies struggled to keep their children. Some lost custody for temporary periods; others, the separation became permanent–a heartbreaking outcome for all involved.

According to Randolph, although most of the children of parents with mental retardation were born of normal intelligence, the kids were being raised by parents who were unable to read to them, who couldn’t drive them anywhere, and who often lived in a state of poverty. In many cases the parental/child roles reversed and the child began bossing the parents, taking on tasks and responsibilities the adult could not handle.

So we were very concerned when Lindsey experimented with sex at nineteen. (Please refer to my blog, Yikes! My Special Needs Daughter Had Sex). Besides the possibility of contracting a sexually transmitted disease, our greatest concern was: pregnancy. John and I wanted to be grandparents (someday), but we didn’t want to raise our daughter’s child. We understood Lindsey’s limitations. Wouldn’t it be morally wrong to encourage her to have a child?

We sat Lindsey down and discussed the pros and cons of having a baby. Birth control options were addressed before narrowing the conversation to a more permanent possibility: tying her fallopian tubes.* Lindsey didn’t get pregnant. And the following month, she elected to move forward with a tubal ligation. She discussed the decision with her doctor. He agreed to preform the surgery, but recommended she not discuss it with anyone outside our immediate family.

In 1999 (like now), sterilization of mentally challenged adults was a sensitive topic. Advocates could be found on both sides of this issue. Although some organizations supported Lindsey’s choice, other groups supported and encouraged mentally challenged adults to have children (if they so desired). Her doctor warned, “Someone could make things difficult.”

I couldn’t believe an organization might interfere in our daughter’s life, our lives and try to prevent her from making this decision. Then a long forgotten conversation I’d had with my mother resurfaced. Her cousin had delivered intellectually-disabled twin daughters. Years ago, when they became sexually active, the parents tried to have the girls sterilized. Activists intervened and the parents were forced to hire an attorney before the tubal ligations could take place.

I wondered if these advocates would be there in the middle of the night when my daughter needed help calming her screaming baby? Would they help change diapers, see to it that the child was fed properly? Would they make sure the tot received proper medical attention? When the toddler grew into a student, would they help this child with his/her math? And who would pay for all this support?

In our case, Lindsey’s surgery went as planned; no protestors showed up at the hospital. And years later, we learned Nick had also made the decision not to have children and had a vasectomy.

The rhyme I chanted as a child: first comes love, then comes marriage–won’t go any further for Lindsey and Nick. They won’t be the parents of a cute, cuddly, bald-headed infant, smelling of baby powder. They won’t be pushing a baby carriage down the sidewalks of our town. Sometimes, my heart aches and I feel deep grief, knowing Lindsey will never experience motherhood–and I won’t be blessed with grandchildren from her. (I may still have an opportunity to be a grandma if my son and his wife decide to have babies.) Yet I know this was the right decision for her. Procreation wouldn’t have been fair to this couple–or their child.

Some parents and/or advocates may stand against me on this issue. They may shake their fists and fight for their special needs adult to bear babies. They may feel it is within their child’s human rights. They may believe their mentally challenged adult could learn enough parenting skills to be successful. And these parents might be spot-on. I’m not promoting forced sterilization for the mentally challenged, but shouldn’t the rights of an innocent, vulnerable baby be taken into consideration, too? Shouldn’t the emotional growth and safety of an inquisitive toddler be encouraged and protected? And as the child ages, doesn’t he/she have the right not to be environmentally handicapped because his/her mentally challenged parents wanted a baby?

There is no easy answer to this situation. Once a young man or woman begins to engage in sexual activities, it is unlikely a parent (or anyone else) will convince them to stop. We can’t lock our adult children in their rooms or be with them twenty-four hours a day. Sterilization may be a realistic option for some intellectually challenged individuals. Others may consider this option to be offensive. I wish Lindsey (and Nick) never had to make these difficult decisions. But I’m thankful these two high-functioning young adults were courageous enough to choose to be responsible.

 

Loving Lindsey CoverMy first book, Loving Lindsey: Raising a Daughter with Special Needs will be out September 26, 2017. If you would like to learn more, click here.

I share many passions in this world: antiquing, gardening, hiking, traveling, taking amateur photographs, writing, sitting on a white, sandy beach with my husband and sipping a frozen margarita—just to name a few. If you enjoy any of these things too, let's connect! The world is better with friends.

  • Aunt Kandi

    I was hoping I’d read at the end about Lindsey’s alternative – – she loves her ‘adopted’ children that she has sponsored through (World Vision? Compassion International?). Perhaps you could place the link to where Lindsey sponsors so others could also sponsor – I’m sure it would tickle her pink to know her act of kindness could be paid forward by others!! She LOVES to talk about her adopted kids!!!

    • I debated on whether to include that here, but didn’t want to give away all the feel-good moments in the book. But the company she uses is Children’s International. Thanks for bringing that sweet aspect of my daughter to the forefront. I know she’d love it if others sponsored a child too!

  • First of all, congratulations to Lindsay and Nick!! But this post re-surfaced so many things I’ve been keeping back regarding my own daughter. As a child with Down syndrome, the only way she could ever hope to mother a child would be if she married someone who does *not* have Down syndrome. Ds in males usually results in sterility. And her chances of having a child with Down syndrome would be *greater* although not a sure thing. She is my only child, so hopes of being a grandmother are next to 0. But I still hope. She’s a super-smart cookie, and I like to think she’d be an excellent mother. Who knows? It’s still too early to say. But there are so many moveable parts that would need to fall perfectly into place first that the odds just get greater and greater. I feel like I’ll be writing a blog post about this one day soon…

    • Dee

      I replied to this but I don’t know if it went through or not. So here I go again. I can relate to what you are saying, Becca. It’s been five years since your post. Has anything changed? I too want a biological grandchild but my son is mentally challenged. His is not a genetic problem to anyone’s knowledge. He is 19 years old and I wish he could have a girlfriend or wife and a chance at having a child. I would pitch in to make it work by raising the child myself if that’s what it would take.

  • Wow, what an amazing and well written post on a really hard topic. I’m a long way off from knowing how challenged my son will be as he’s only three (undiagnosed developmental delays) and honestly, I’ve never thought about him as a father. But I think you’re right that it’s not fair to the child of two special needs parents to not be able to have guaranteed safety, stimulation and appropriate care. I kept hoping that I’d read that they were going to adopt a baby but share a home with Nick’s typical sister and her family or something. You’re so brave to write about this. Hugs to you and yours!
    By the way – congratulations on the wedding! They look so happy 🙂

    • Kristi: they truly could not handle a kid, it would be too stressful for both Lindsey and Nick. In the end, the child would be raised by us or someone else in the family and to me, that doesn’t seem fair to us, them, or the potential child. On a positive note, Lindsey adopted a child from Children’s International when she was sixteen. She pays $12 a month. She is on her third sponsored child. To me, that is a great way for her to feel connected to kids (even though the girls she has sponsored are from the Philippines) because they send her letters and pictures and it makes Lindsey extremely happy to get mail and tell everyone, “this is my ‘dopted daughter!” There are some special couples who could handle kids. This decision really does need to be made on a case by case basis. Again, I appreciate you reading this post and leaving a comment. Now that all my friends are becoming grandparents–I’m feeling a bit of jealously. But I can keep the green monster in check. I couldn’t handle my daughter and her husband not caring properly for an infant/toddler/teen.

  • Pingback: Lindsey’s Twelve Things of Thankful: December 29, 2013 | OutOneEar()

  • LynnK

    Choosing to have children is a private topic and by all accounts Lindsey weighed those options (just like I did and all women do) after she was given a lot of information on the topic.
    I’m a proponent of person centered care and if parenthood is part of that plan then it’s my job to assist in the independent living and support of all choices.
    The way Minnesota works is once a year someone from the state comes out and assesses the needs of the person and PCA hours are given based on the need. So if they became a parent or were trying to conceive they would get hours to cover that need.
    While we as care providers would in no way be raising the baby we would provide the support and education needed to enable the parents to be the best possible parents they can be. So yes we, I, would be there in the middle of the night to assist the person to do what was needed.
    Lindsey and Nick made very mature choices based on their lifestyles. Which is more than I can say for some people.

    • Awwww. Your comments are making my day. This is a tough decision to make. Thanks for your kind words. I may wish to talk to you more about this in the future–if you don’t mind???

      • LynnK

        I would be very open to talking more.

        • Thanks Lynn. I’m traveling right now, but I may take you up on this as I’m working on my manuscript. Truly appreciate it. 🙂

  • Johnny Berg

    It is an honor and privilege to even read this. I know it comes from your heart. My wife is intellectually disabled and is a mother of two. I am disabled as well, yet we manage. We have quite a unique situation and there is not much on the internet covering this subject material. When I bring it up in other forums I am reduced to a vile person for even being married to an angel as my wife. We have a very beautiful outcome and it hurts me to not share it and when I do it gets trampled. I very much admire you for keeping this blog. The risks and challenges are very real in special needs parent homes. It takes a lot of diligence and patience. We keep strong supports in place but they can’t live our responsibilities for us. I was touched years ago and my heart ached serving the special needs population. I heard well their hearts though they were non verbal. A vision developed from being in fellowship with them. I cried unto God in desire to see care to be upgraded to levels of full inclusion, live their dreams, community support empowerment, etc. Little did I know I would become widowed. Life has since required of me to apply the standards I held high for the special needs field to provide for the angels among us. With what measure I judged I now have been asked to live by. I am living my dreams and prayers with a very beautiful person. It is far from easy street but I have a very special place even still in this world of troubles. A refuge, a strength, a joy…and it is in human form…I hope someday you can meet Heather.

    • Thank you for reaching out to me. I loved your sweet comments. Thank you so much for sharing. The best of everything to you and your family.

  • MotherKnowsBest

    If the disease is genetic, they should not. Otherwise, more power to you, unless you are physically and/or mentally incapable of raising a child. If I was suffering of some genetic disease, especially if it was a severe one, I would not have children voluntarily, because I could not, in good consciousness put that knowingly on a child and force them to be limited by it.
    However, again, if the disease isn’t genetic or completely crippling, it wouldn’t enter my mind in regards to child birth.