Life with Down syndrome

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Last week we were “interviewed” via email for an article on raising children with special needs. It will be published in the Couple to Couple League’s magazine, Family Foundations, in the March-April 2009  issue. I asked permission to post the questions and our responses in their entirety here, and received it. So here you are: some perspectives on life with DS.

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·            What is it like to raise a child who is developmentally disabled?

 

Busy! We’re blessed with great therapists who come to our home, but even so, it leaves us with little unstructured time. Other than that, it’s not all that different from raising any other child. Julianna tests limits, gives us great laughs and smiles, good times and bad.

 

·            What are the unique blessings and challenges?

 

The busy-ness is a challenge and a blessing. I’m a very structured, on-the-go kind of person, so as a stay-at-home mom, the long unbroken days are hard. Having therapies ties us down, prevents us from running to the store or taking a day trip to visit family; it makes it tricky to set up play dates for Alex (3 ½). But on the other hand, it lends rhythm and structure to the days.

 

Blessings: Having Julianna has taught us the importance of keeping a balance between setting high expectations and getting caught up in what a child “should” be doing. It has made us better parents.

            Julianna’s smile is such a blessing. Having a 2 year old who is still more baby than toddler means that all those precious baby moments last longer. She still smiles just because we smile at her.

 

Challenges: We have to worry about education a lot more. Will she be included in the regular classroom or relegated to a resource room? Will she be able to attend Catholic school at all? Plus, we have to provide financial security for her total life, not just through high school or college. This is a much bigger financial commitment.

 

·            How has your child deepened your faith?

 

Since Julianna came along, the day-to-day worries of life no longer overwhelm us. We’ve learned to “let go and let God” a little better. Of course, in order to achieve this growth, we had to experience some earth-shattering upheavals. After the initial “mourning” period, we learned to view Julianna as a gift not only to our family, but to the world. We believe God gave her to us for a reason, and part of that reason is that we have such a public profile in our community that lots of people get to experience the joy of knowing a child with Down syndrome.

 

·            How has your child tested your faith?

 

In the beginning, we had the “Why us?” reaction, and had to grow past that limited understanding. We also had to accept that we probably will never have the kind of “empty-nest” freedom we hoped for. And there are always moments of doubt: will she ever learn to walk? Talk? We’re expecting our third child this spring, and I sometimes wonder how I can possibly care for a third child right now, when the two-year-old isn’t even walking or spoon feeding.

 

·            How do you and your spouse work to make your disabled child feel like a normal family member? How do you ensure their siblings feel normal too? Give examples.

 

Giving every child the appropriate attention, discipline and encouragement requires constant re-evaluation—just as it does for parents of “normal” children. Julianna gets lots of one-on-one adult interaction in therapies, so I tend to spend some of those hours with Alex (3 ½): reading books, making cookies, playing. We also try to find fun activities for Alex. For instance, he and I go to concerts (he loves drums). When we read books, we read alternate one for Alex and one for Julianna. As in any family, one child or the other is “in the spotlight” for a while, and then another takes center stage. We use the same disciplinary techniques with Julianna as we did with Alex; the difference is that she passes through the developmental stages more slowly, so each individual stage lasts longer (throwing food, banging on the piano during choir practice, etc.)

 

·            What kind of stresses come with developmentally disabled children? Ex. Greater need for a babysitter or help from extended family, financial stresses, home renovations for wheelchairs, etc.

 

Down syndrome is really very mild in the spectrum of disabilities, so although there is stress (of course!) it is not nearly the overwhelming experience that some other families have to cope with. I think that’s important for families to know, going in. The first year is the toughest. That’s where you have all the visits to specialists because of the health issues; that’s where the greatest financial crunch is.

 

·            How have you coped with these stresses?

 

We are blessed that Julianna and Alex are mad about each other, and can entertain each other; that our acquaintance is so far-flung that we almost always have an “expert” we can call for advice—medical, therapeutic, service-related, and so forth; and that our county provides great services such as “respite” for 5 or 6 hours a week. Outside of that, good time management skills are key—and using nap time wisely! Christian and I try to be sensitive to each other’s need for down time.

 

·            What’s your daily life like having a child with disabilities? Give examples.

 

Mornings are for swim lessons, grocery shopping, and therapies. Nap time is after lunch, with books and horseplay (lots of horseplay). Late afternoons, the kids play or watch their daily TV ration while I teach music lessons. It’s a fairly normal family schedule. The main difference is in how we play with Julianna—we have specific tasks to work on from each therapist (when we can).

 

·            Have you foregone certain luxuries such as movies or plays or trips because of the difficulties of including your child? How do you deal with that? Give examples.

 

Not so much, at least not yet. This connects with DS not being that severe, and besides, Julianna is still very young. We haven’t had trouble finding babysitters for dates.

 

·            What kind of stereotypes does your child encounter or your family as a whole? Has your child or have you encountered any offensive comments or misperceptions that have been surprising or hurtful?

 

Sadly enough, I have found ignorance and lack of support among the medical community. When Julianna was a week old, the geneticist watched her nursing and then told me that he knew I had my heart set on nursing, but I should prepare myself that she wouldn’t be able to—even though he could see for himself that she was already doing it! And for the first 18 months of her life, every time she got a cold, the doctors sent her to the hospital—even after her heart was fixed, they still treated her as if she was different from other kids.

 

From the general public, the comment we get the most often is that “these kids are so loving.” Fortunately, we tend to meet people who are more interested in asking questions than perpetuating stereotypes.

 

·            Would you like to comment on Sarah Palin’s candidacy and the fact that she felt she could be the Vice President and raise a young baby with Down Syndrome? Do you think that would have been possible?

 

I really don’t have much to say on this subject, either way. Sorry, I just prefer to avoid that wasps nest. :/

 

·            Were you aware of your child’s disabilities before his or her birth? Did you doctor ever suggest aborting the baby? How did you deal with that?

 

We didn’t know till after, but our doctor wouldn’t have suggested it anyway; he’s an NFP-only doctor.

 

·            What specific stories and anecdotes do you have that illustrate your child’s impact on the family? This could be a funny comment, a misunderstanding or an inspirational example set by this special child, etc.

 

Soon after I found out I was pregnant with our third, 3 ½-year-old Alex went running to our physical therapist and said, “Miss Gerti! My mommy has a baby in her tummy! And when the baby is born, you can give her PT, too!”

 

It’s been very rewarding to watch Julianna interact with older children, who adore her, and with teenagers and young adults, several of whom she has inspired to work with special needs kids.

 

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My thanks to Jessica Zimanske, who is writing the article, and to CCL for offering us the opportunity to share.

 

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