Don’t take my word for it: Q & A

September 20th, 2011

Question:   How can the pediatric ophthalmologist know what the right prescription is for Verity, or for any other nonverbal person who can’t answer the “which is clearer, A or B” questions as he flips the lenses around?

Answer:  A lens bends light the same amount going either way through. When a person wears glasses, the light (and the image) coming into the eye is bent, or refracted, by the artificial lens of the glasses and then again by the natural lens in the eye. Then this twice-bent light hits the little sensors on the retina in the back of the eye.

If the ophthalmologist is looking into the person’s eye with a light, the same correction that best allows him to see the retina and its blood vessels, etc, in perfect focus to his eye looking in will be the identical combination of natural and glasses lens that will bring images into perfect focus to the patient’s eye looking out.
~my new friend Dr. Elizabeth DeHority  [Please click on that link!  I promise it is not what you think!]


Question:  What would you say to someone who had decided not to adopt a child with special needs for the following reasons, which I have re-stated in a more courteous manner:

“What would happen to a special-needs adult after the parents are no more?  Would I burden my children all their lives with a sibling who is dependent on them?  What about their future families?  These are valid concerns to me.”

Answer:  I passed this question on to a group of parents who have children with Down syndrome, and asked them for responses.  I also asked my husband and older children for their thoughts.

Here’s what they said, all names given by permission…

“I guess that I would be concerned about the mentality of the [other] children of that person. I was raised with expectations of what ‘family’ means. I would take care of my siblings, even my cousins or their kids, if they needed me. That mentality though I don’t think is innate; my parents raised me to value family. Perhaps that person shouldn’t adopt if they are going to raise their kids to see their sibling as a burden.”

“God has called us to this adoption.  He has made Himself VERY clear that this is His plan for our lives, including the lives of our children.  We have two choices, obey or disobey.  Live in God’s will or live out of God’s will.  We all (including the children) are choosing to live IN the will of God and to obey.  We are believing and expecting Him to take care of us and the child we will adopt for all of our days.  No one knows the future except for God, the one who is calling us.  I trust Him more than I trust myself.  I will trust and obey!”

“Well, until that person’s perspective changes, and they don’t initially view their child as a ‘burden’ – then maybe it’s a good thing they’re not up for adoption.  It would be hard knowing that the people who adopted me thought of me as a burden from the get-go.”

“Let’s say they were never going to be prospective [adoptive] parents and one of their other children had become paralyzed or disabled.  Do they then become a burden?  And to their other children too?”

“My daughter shares her opinions on whether or not her sister would be a burden to her in this post:  My Sister, a Burden?!?!?!

“One of my sisters was adopted, and I never, ever considered her a burden.  I’m sure my parents thought she was a handful sometimes; she certainly knew how to get into a lot of trouble when she was a teenager.  She passed away at a young age, and I miss her every day.”

“Same question comes down whether it’s adoption or continuing a pregnancy after a prenatal diagnosis.”

“We have two adopted children with Down syndrome.  We…trust a carefully chosen circle of friends for each child to be part of a “trust board.”  Each trust board will meet yearly to keep up-to-date with the children and their goals and dreams and plans.  Out of these trust boards will emerge a logical guardian for each child and someone who can manage their finances when we, the children’s parents, aren’t here.  We have no family that can care for our children when we go, so we have to formalize things a bit.  We are saving everything we can for their futures and we are praying we can trust our community to be good to our children when we can’t advocate for them anymore.”

“Why have we as a society become so incredibly self-absorbed?  We don’t want anything to inconvenience us (or others, though I think that is often an excuse for ourselves).  What does ‘burden’ mean anyway?  Almost everything in life worth anything is a burden to some person at some time.  It has become so pervasive that we cut each other off on the freeway, provide bad service, don’t even smile at the person in line next to us at the grocery store.  All wrapped up in our own little world, no wonder the idea that we might have to care for someone who can’t completely care for themselves someday would be considered a ‘burden.’

I feel that by making the statement that I don’t want my older two children to ever be ‘burdened’ by Reagan someday, I am cheating them out of several things.  First is real maturity.  Part of raising them to be godly women is to teach them to care for others above themselves.  But most of all what has struck me over and over since Reagan was born is that if I don’t raise them to be ‘burdened’ by their sister I am CHEATING them out of loving fully.  Being of service gives us purpose and we all need a purpose to feel valuable. So I would say to someone asking about burdening their children–what kind of people do you want them to grow up to be?”  ~Shauna, mom to cutie-pie Reagan

“My sister has special needs (not Down syndrome).  She is six years younger than I am, and I’ve never seen her as a burden.  And she requires a lot more care than the ‘average’ child with Down syndrome!  In fact, my parents just dropped her off here for me to look after her for two weeks while they’re on vacation.”

“I think it’s about perspective. If you encourage your children to consider their sibling with special needs a burden–adopted or otherwise–then they will consider them a burden.  If you talk up the good things along with the bad, it just becomes part of life.  And I think that’s what people fail to see.  At the end of the day, people with special needs are just…people.  They might require more care than people without special needs, but if you ask me, the giveback is awesome.”

“I’ve…seen many articles about non-family members who WANT to support friends’ adult children with Down syndrome and bring them into their families.”

“I would want to take care of them.  I would be mad at the person who said that they were just a burden.”  ~ nine-year-old daughter Jane  *polite cough*  *has some familiar lessons ahead of her*

“Your other children would grow up with their brother or sister, and be used to them, and would love them, and it would not be a burden.  I don’t know why it would be a burden.  Even if it would be hard to take care of them, I would still want to, because I couldn’t bear to leave them alone.”  ~twelve-year-old daughter Laura

“What would you adopt them for if you didn’t want them?”  [“No, I mean, would it be unfair of the parents to expect their other children to take care of their sibling when they were grown up?”]  “I don’t see why I wouldn’t want to take care of them.”  ~fourteen-year-old son Joshua

“Adopting a child with special needs certainly won’t make their other children into worse people!”  ~sixteen-year-old son Daniel

“It all comes down to what their priorities are in life.  Is it important to them to give up lesser things for the sake of serving someone who is weaker?  What they think is important is what their children will tend to think is important.  If they’re viewing it just as a burden, they shouldn’t be doing it, anyway.”  ~son Daniel

“What would happen if they didn’t adopt?  There would be one more child who just did nothing for the rest of his or her life.  You can’t say it’s more valuable for your other children not to have that sibling to care for than for this other child not to have any life at all.”  ~son Daniel

“You’re never going to convince somebody that God wants them to do something.  It has to be God.  If they are determined not to do something, or they are stonewalling, only God can change them.  God does use people to show things to other people, though.”  ~son Daniel

“It depends on how you’re raising your kids.  If you see the child as a burden, your other children will too, and you probably shouldn’t be adopting then.  Some people think that they have to do something hard for God, and they don’t really want to.  We should be letting the light shine out of us…doing it joyfully.  If we won’t be doing it joyfully, maybe God would rather we didn’t do it at all?   I don’t know.”  ~seventeen-year-old son Joseph

“If the adopted child ended up making them all feel like he or she was a huge burden, and they acted selfish and grouchy, it’s just bringing out their true nature, and they would have been that way about any other work they had to do.”  ~son Joseph

“Actually, the way I would answer that might not make sense to someone who didn’t have the same belief in the sovereignty of God.”  ~son Joseph

And my personal favorite…

“If you’re going to worry about passing a burden on to your children, worry about your sins and weaknesses.  Those are what will harm and burden your other children, not adopting a child with special needs.”  ~husbandman Joe


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15 Responses to “Don’t take my word for it: Q & A”

  1. Joseph says:

    “Almost everything in life worth anything is a burden to some person at some time.”  One of my favorites.  But I think Dad’s really sums it all up.  He is so right.

  2. sabrina says:

    Loved all the responses.
    This was one of my favorites.
    “If the adopted child ended up making them all feel like he or she was a huge burden, and they acted selfish and grouchy, it’s just bringing out their true nature, and they would have been that way about any other work they had to do.”  ~son Joseph

  3. Deanna says:

    I loved Joe’s response!
    Why do we not see these things as huge burdens to pass on to our children?  Thanks for sharing your kids thoughts too.

  4. Terri says:

    As always, your post blessed me this morning! 

    I love all the responses and think your husband’s is one of the best I have ever heard not only in this context but also in the context of adding any child to a family.  I know some of our relatives think it is a burden on our children to add a new baby to our family and the same thoughts apply.

  5. Lish says:

    My younger sister has cerebral palsy, she’s classified as quadriplegic and has always required a great deal of care. In my teen years I was given a great deal of responsibility for her care. I had no idea that it was preparing me for my future. My mom passed away at the young age of 41 of cancer and my father fell deep into substance abuse. With just two months before my wedding day, CPS removed my sister from my father’s home where she was being neglected. I received a call that I had a choice: take in my wheel chair bound sister even though I was young, about to be wed, living in a 1 bedroom, non accessible upper apartment or send her away to a facility in another county to be cared for by strangers who don’t know or love her. My immediate instinct was YES, ofcourse I had to discuss this with my soon to be husband and we agreed she belonged with us. I’d be lying if I said there weren’t hard times, times where I felt some bitterness, not towards my sister, or my mom but my drug addicted father and  the injustice of it all. But never once did we regret choosing to take her in over having her put in a “facility”. That’s not where a a child belonged, she belonged in a loving family (even if it was a family that was still trying to figure out how to be a married couple, as well as parents)  She lived with us for the first 8 yrs of our marriage,  into adulthood and is now living on her own! She has her own apartment in a secure building designated for elderly or disabled people and has caregivers that pop in through out the day to help with her needs. She loves the social interactions that her new living arrangements afford her and can be a “grown up” While she no longer lives with us we’re still “parents” to her and the first people she calls. Don’t underestimate the love of siblings we love our special needs sisters and brothers, we sacrifice and love them so much. While the world sees the disabled as “burdens” we see them for who they are,  the ones we grew up with, share happiness and sorrow, laughter and tears, snuggles and even tiffs. Adopted or biological they’re our sisters and brothers, God’s precious children and deserve to be part of loving families.

  6. Kendra says:

    Great post.  Love Joseph’s post…so right!

  7. Shauna says:

    I too LOVE Joe’s response…we don’t ever consider that do we?

  8. Susanna says:

    Lish, that brought tears.

    Thank you so much for writing.

  9. Cecilia says:

    If I am honest, I feel like the tone of most responses to question two do not match the tone of the question. You have always been so gracious, and it bothers me that many answers question the character of other siblings. Words like self absorbed should not be used lightly, especially when the question was asked politely (at least what was posted). I would guess others have had these same questions, and I admire your willingness to provide answers.

  10. Susanna says:

    Cecilia, thank you for your comment.

    The original question came some time ago, anonymously, and in a much less courteous manner than the one I cleaned up and posted. In the rest of the comment, this particular anonymous commenter made it very clear that they were living under the assumption that a human being could rightfully be called a burden. I am sorry to say that they also made it very clear that they believed they had the right to carry a bitter grudge against anyone who disagreed with their assumptions. I don’t know this, of course, but as I read the anonymous comment, I assumed that the commenter would not be visiting this blog again.

    [NOTE ABOUT ANONYMOUS COMMENTS–As always, I’m not sure some folks understand that a blogger has absolutely no way of privately answering an anonymous comment. So it really comes across like an immature attempt to have the last word or to cast off the constraints of courtesy that come with using one’s own name. And when the comment contains false accusations, as they nearly always do, it also comes across as attempted emotional manipulation–trying to make the blogger wither apologetically back into the dark, quiet hole of fear. Sort of like hand grenades being tossed out from behind a bush to the blogger who is standing exposed to the public eye. It is more likely just an opportunity for “free” venting, sort of like a public toilet, which is why I trash most of them before they see the light of day. Just for the sake of public decency, you know, heh heh. I’m slowly learning that a healthy sense of humor is a great defense against this kind of hand grenade!]

    We thought that the core question was a good one, though, as an opportunity to cut to the truth of the matter. The answers do not beat around the bush, but head straight for the core assumptions underlying the commenter’s words. It is not accidental that people who have a child with special needs often describe the experience as opening their eyes. When someone has a child with special needs, the whole experience has a way of exposing an awful lot of myths and half-truths that they used to assume as fact. The commenter did not have the privilege of having a child with special needs, but even if I hadn’t known that, the assumptions underlying their statements were a dead giveaway. There is a HUGE divide between the perspective of those who love a child with special needs, and the perspective of the rest of the world when it comes to disability. It was one of the first things that struck me when I began to meet other T21 parents, and I still see that HUGE divide today. If I could, I would give everyone else the glasses we see through every day. They can make some vital things very clear very quickly.

    Also, I want to encourage you to go back and read the replies again, and look to see if they are truly challenging the character of the siblings, or if they are challenging the false assumptions of the parents, who are at risk of handing those false assumptions down to their children. I think you will find that the writers are saying that IF the parents live from the assumption that any or all of their children are burdens (via words, avoidance techniques, eyeball-rolling, sighing, complaining, martyr attitudes, etc, etc), that their children will most likely adopt those assumptions, but that IF the parents embrace each life as a gift, that their children most likely will, too. And this is true.

    Thank you again for your comment, and I hope this sheds a little more light on the subject for you, and allays your concerns.

  11. Cecilia says:

    Thank you for clarifying, Susanna. Knowing the question was edited some does help. I don’t like the word ‘burden’ either when used to describe people. I suppose I was viewing the question more from the viewpoint of considering logistics of care (I see the bias in the question as well now, I read it quickly), and that was answered by a few in the comments. Thank you for your gracious answer.

  12. Kendra says:

    What a beautiful post, Lish.  I just read it out loud to my husband.  Thanks so much for sharing!

  13. Shari~hotfudgecustard says:

    Eric said, “AMEN!” to Joe’s response!  : )

    Great thoughts!!

  14. Sandie says:

    And your new friend spins and knits, too!  Wow, I have to meet her, we have so much in common:)

    Great explaination on how the eye exam is done. 

  15. Phyllis says:

    We have a question, if you have time: will Katie grow and catch up with other children her age once she joins your family? Is it likely that she’ll learn to walk? My children have been desperately praying for her, and they’re very curious to know this.

    I haven’t had a chance to comment before this, but I found your blog while you were in Katie’s country, and we’ve been praying since then. We live in Eastern Europe and have seen similar heartbreaking situations, so this is very close to our hearts. Thank you so much for what you’re doing!

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