Curing Your Kids?
I am not a gifted storyteller. I can’t take you on the painful and overwhelming journey of discovering and admitting there was something “wrong” with my son. He wouldn’t talk and was socially withdrawn. A possible autistic spectrum diagnosis would go through the mind of anyone who knew enough about it, but language was our primary concern. Over the years he has changed and developed and perhaps the most accurate diagnosis is Specific Language Impairment.
I do, however, want to tell you about something I read a couple years later written by a young man with Asperger’s Syndrome. He didn’t understand why someone would want to find a cure for Asperger’s (or autism) when he didn’t want to be cured. It was who he was.
I looked at my son and realized that whatever challenges he will have, they will help mold him into the person he will become. As much as I wished I could give him a “pill” to “cure” him, down the road, how could I want to cure a very integral part of him?
I looked at my own experiences. There were positives and negatives that came from my experiences and they have helped shape who I am. You can’t take those things away without changing the current me.
As the years go by, I will not be able to separate my son from his weaknesses; they will be a part of him as much as his amazing strengths are. His unique experiences as he deals with his successes and failures will influence the person he will become. How dare anyone try to take those away from him and “cure” him? And how dare I as a parent ever tell him I wish he were different?
JKS is thirty-five and lives in the Seattle area. Her strengths and interests include financial management, British history, taxes, Shakespeare, Tim McGraw, and her children’s education. She loves to attend the ballet and play games.
Her recent accomplishments include: organizing a playgroup, using a power saw for the first time and putting up new molding, going to an IEP (Individual Education Plan for children with special education needs) meeting for her kindergartener and hearing the principal say she was the “most prepared parent he’d seen.”
She has a BA in History (after going through many majors) and worked as a bookkeeper for several years. She’s been married for 14 years, and has three children.
July 28th, 2006 08:36
I have two children that have Language disorders and it has been very hard for me to deal with as they grew. Even today I struggle with trying to get them to understand what I tell them and what they need to do to improve. They are smart children but they have difficulty communticating what they know and understand. I have accepted this is how they are. It doesn’t make it any easier as a mother to watch these bright children struggle with school when they have cousins that get extremely good grades and family “brags” about how wonderful these other children are. I have learned to focus on their inner spirits and their enthusiasm for other things in life.
July 28th, 2006 09:01
Very interesting thoughts.
I have my own weaknesses. There have been minor limitations that I have that have kept me from doing some of the things I would like. Nothing major. But the way I often feel, I would be tempted to trade many of the good things in my life to not have these weaknesses, and be able to have a mortality ‘do over’ without them. Some of those things come down to what we feel about our own problems, and if we seek to be cured of them. For certain cures, I would be first in line.
July 28th, 2006 11:04
How dare anyone try to take those away from him and “cure” him? And how dare I as a parent ever tell him I wish he were different?
I have a 20-year old son with Down’s Syndrome who is almost completely nonverbal. Every time we give him an augmentative communication device and encourage him to use it, we are telling him we wish he was different.
I also have a daughter who struggled with OCD and various eating disorders. Every time we took her to a counselor, we were telling her we wish she was different. When her weight dropped to a level where we had to have her hospitalized, we were telling her we wished she was different.
How could we possibly do otherwise?
July 28th, 2006 11:25
Last Lemming,
Personally, I think there are different answers for different situations. Some things we must try to change (like an eating disorder that can put her life at risk). Other things like the communicative device can help in positive ways, too. I tend to think, however, that there are aspects of life that we can’t really change, so it’s better to accept them and try to learn from them. If there are unchangeables with our kids, I think the same thing can apply. It’s a tricky balance. I’m with Eric that there are weaknesses/struggles that I have that, if a cure were known, I’d be signing up. Mortality is wrought with such “opposition” and yet our prophet himself praises the wonders of medicine that have improved much of life. So I think we can’t swing to one end or the other on this pendulum. Some things might be changeable, and that might be a good thing. Others need to be accepted and seen as opportunities for growth.
July 28th, 2006 11:31
I think about this all the time regarding my son who has adhd. There are gifts that go along with his condition that may really benefit him someday — his energy and intensity that wear me out, might someday make him a great scientist or performer or whatever he chooses to be. But to get along in the world right now, he has to conform. To preserve his self esteem, he has to be ABLE to conform. And so we use medication, but every time I administer his pill I think about this and wonder if it is really right or if I am just knuckling under to a very intolerant world.
July 28th, 2006 13:04
Last Lemming, I don’t think JKS meant to say that we shouldn’t try to help our children in any way we can to overcome their disablities so that they can function as well as possible during their mortal life.
I like the way Michelle put it(#4): “Some things might be changeable, and that might be a good thing. Others need to be accepted and seen as opportunities for growth.” As parents we do all we can to help them. And despite all the frustrations of dealing with their physical, mental, emotional or spiritual shortcomings, we love them, and wouldn’t seriously consider trading them in for better-functioning models. (At least most of the time!)
July 28th, 2006 15:56
Last Lemming, I am glad you posted here. As you say, “How could we possibly do otherwise?” I also have worked with my son a lot and he gets professional speech therapy. But it seemed to me like I was stressing out so much about trying to fix his issues.
The thought occurred to me that I had been a shy child. What if my parents spent all their time trying to make me not be shy anymore? How fair is that? My parents are willing to accept that there are some things I’m good at and some things I’m not good at.
For me, this epiphany led me to take some time to “work on his strengths.” It also helped me imagine that his weaknesses would create other strengths. Nobody goes through life unscathed by pain or disappointment. As a parent you want to shield your child, but if you keep them in a bubble they don’t get to learn anything.
Every parents job is to help their child reach his or her potential and to help them grow up and get along in this world. How you help each child depends on the individual child.
With your DS child, when you help him communicate maybe in some ways you are saying you wish he is different, but you are also helping him learn and reach his potential and can be proud of his accomplishments and what he actually does communicate.
Since your son is 20, you could probably write a lot here for me to learn from. I’m still a mom with young children who has quite a lot of parenting still to experience. What the Asperger’s young man wrote helped me be just a little more accepting of the fact that my child’s life would not be perfect - and that maybe that’s not such a bad thing. Acceptance of this is a process, I think.
Thank you for posting. Here is a link to an article I read (after I had written this post) that is along these same lines (particularly at the last couple paragraphs).
http://www.businessweek.com/technology/content/jul2006/tc20060720_148057.htm
July 28th, 2006 15:56
Tanya – Since my son only just finished kindergarten (part day) I am unsure about how school will go down the road. So far I’ve noticed that my son really soaks up information about things that interest him, but school won’t be like that. I think that’s great that you focus on what other things make them great. Definitely feel free to brag about them too!
Eric – It is an interesting thought to wonder what I’d want to be cured of. I guess for myself I’m more willing to accept that life sucks but for my children I really have a hard time thinking about bad stuff happening to them. I know that all of this is part of mortality, though. What exactly are we supposed to learn? Obviously everyone gets a different mortal experience. I have to tell myself that if it would make a difference for my child’s eternal existence, Heavenly Father would intervene. So if he didn’t, my children will be able to reach their “eternal potential” even with whatever disadvantages or tragedies befall them.
July 28th, 2006 16:24
Interesting thoughts.
July 28th, 2006 19:30
JKS, have you read Beth Kephart’s “A Slant of Sun”? It’s a moving and beautifully written memoir(?) of her journey to a diagnosis of PDD with her son, and her gradual acceptance and appreciation of him. Reading it helped me notice and understand my children’s gifts in a new way.
July 29th, 2006 13:04
Someone mentioned something about conforming and it made me think of a condition I have that is permanent that I was born with that will never be changed… that will always be a part of me. WHen I was a teenager, I had a difficult time with accepting that this was part of me. I was upset that my body had been created with a defect or a problem that was not curable. It took awhile to accept. I fought it tooth and nail and tried to sneak foods that I wasn’t allowed to eat so that I could “be like all the other kids” and not be weird or different. The consequences for my behavior can be neurological damage that is irreversible and mental disorders that are irreversible. If I had conformed to what the world did or conformed to what all my friends wanted me to do so that I would be accepted and normal, then I could have had dangerous consequences. Thankfully that is not the same for everyone’s problems or challenges and often the consequences are not as noticable. However, I did have to conform. I had to conform in a different way… not to be like everyone else, but I had to conform to medical professionals by eating a specific way that is funny and weird and different than everyone else and I had to conform to stay on a specific diet that my doctor’s prescribed and take a certain formula that my doctor’s prescribed for me to keep me from experiencing permanent neurological damage in the future. Although I don’t really like the word conform, I did in fact have to conform to a certain way of living and being that wasn’t like everyone else and was different so that I could be healthy in body, mind, and spirit. This makes me think of conforming to Christ’s will. We are all born with a purpose and GOd has a plan for each of us. If we conform to His will, we may not be like others and may even be weird. If we conform to Satan’s plan, we may be just like everyone else but that doesn’t mean that we will have the eternal reward that God desires for us or that we will be healthy in spirit. I dont know. Just a few thoughts that I had while reading this.
July 30th, 2006 18:28
My daughter has down syndrome.And I wonder if a “cure’ was avaliable, would we want it? would she still be the little girl we love? When we die will she still have DS? If she doesn’t, will she still be her?
I know she sometimes is frustrated with us for not understanding her right away, or wants to do things just like other people but just can’t quite get it. It is hard. We just keep trying to help her reach her potential the best we are able.
July 31st, 2006 10:08
Hi JKS! I have a son with developmental/language/neurological issues as well (he’s so close to normal, but a little odd in so many ways.) I also have a 2nd cousin that I grew up with, who has been diagnosed with Aspergers as an adult. He’s a good husband and father, with friends and interests. He tells me that he has realized he just doesn’t have much sympathy for others, and frankly that is how he is and he doesn’t want to be cured, now or in the resurrection.
Well, he may lack some ability to sympathize, but he’s too good of a father and husband to be completely insensitive. I think he’s developed other aspects of his personality to compensate, and these have become strengths. I told him that I think when he is resurrected, he will keep all the strenghts he developed as part of this challenge, and he will gain the abilities that have thus far elluded him. I think he’ll be “cured”, but without losing the precious things he’s gained. Just my opinion.
Like you, I try to help my son in every way I can. But sometimes I help in a really supportive and “helpful” way, and other times I am overcome by irritation or my own fears and embarrassment, and my help stops being helpful and just becomes a criticism. It is then that I need the reminder you gave with your post. Thanks!
July 31st, 2006 12:12
Karen (#12), I think Kristy (#13) has beautifully answered your questions about your daughter with Down’s Syndrome: “When we die will she still have DS? If she doesn’t, will she still be her?” Although we don’t understand how everything will work in the resurrection, in Alma 41:4 Alma the Younger said, “all things shall be restored to their proper order, everything to it’s natural frame–mortality raised to immortality, corruption to incorruption.”
IMO, that means that anyone who is in any way denied full use of their mortal body or mind either from birth, or due to accident or illness will probably have full use of it again after the resurrection, through the Atonement of our Savior.
I interpret this to mean that, as Kristy put it regarding her cousin, “when he is resurrected, he will keep all the strengths he developed as part of this challenge, and he will gain the abilities that have thus far eluded him. I think he’ll be ‘cured’, but without losing the precious things he’s gained.”
July 31st, 2006 13:15
I have put a hold on “A Slant of Sun” at the library. Thanks for the book recommendation, Kristine.
July 31st, 2006 13:31
THanks for all the responses. There are a lot of good ideas here. I posted on this topic because my son’s situation forced me to view things in a new way. What exactly is my job as a parent? To help my child reach his potential, as Karen said. The fact that every child’s mortal potential is different, doesn’t change your role.
Spiritual potential is a little bit more of a mystery. I don’t exactly know how this mortal experience prepares us for the next life. I do think that all of us are “limited” because we are human. Whether we are talking physical limitations or cognitive or emotional, or the fact that we all make mistakes.
We are asked to learn here on earth, and I know we will take what we learn when we move on. I think, however, that most of our mortal limitations will be removed. I think Kristy’s Asperger’s cousin, for instance, will not be the “same” after he is resurrected, he will be a better version of himself. I have faith that I will be a better version of myself.
We don’t have that many details about what continued process and development we will go through after death and after resurrection, but I am convinced that it is more than our mortal existance.
I don’t know why exactly some people come to earth and live only a short time, or in difficult circumstances. I think we knew this, and God obviously thinks it has to be this way.
To continue what Stephanie brought up, Satan’s plan probably included us living exactly 80 years with no health problem and having exactly 100 IQ tests and being equally attractive and talented in all areas, with no tragedy or sorrow in our life. But for some reason this was not the best way for us to develop.
July 31st, 2006 14:03
> As the years go by, I will not be able to separate my son
> from his weaknesses; they will be a part of him as much as
> his amazing strengths are. His unique experiences as he
> deals with his successes and failures will influence the
> person he will become. How dare anyone try to take those
> away from him and “cure” him? And how dare I as a parent
> ever tell him I wish he were different?
I’m afraid I have to disagree.
Your son’s weaknesses may shape him, but they are not an essential part of his identity. If those weaknesses were to disappear spontaneously, would you say, “This is no longer my child?” I don’t think so.
Look at the opposite situation: Assume you had a child who was permanently injured in an accident. The weaknesses resulting from the accident would influence the person that child would become. Would that child somehow be less your child because their development takes a different course after the accident than it would have otherwise? I don’t think so.
Helen Keller developed to be the person she was due to her blindness and deafness. If she hadn’t gotten that infaction as a small child, her life would have been very different. Yet if a cure for her blindness and deafness had been found, I would not ask her mother how dare she try to “cure” her child.
In John 9, the Savior healed the sight of a man who was born blind. Did that man stop being who he was? No–his life had been shaped by being blind to that point, and that past would continue to affect him in the future. But his future development would also be affected by his having sight.
Change comes to people’s lives. If a cure for a child’s weaknesses is found, something that would allow the child wider opportunities in this life, it doesn’t change who the child is. It doesn’t take away a child’s past successes and failures. It changes what strengths and weaknesses–what successes and failured–will affect the child’s future development. And for that, I think a parent can dare to wish a child’s future to be different than it might otherwise be.
July 31st, 2006 16:00
I have never liked hearing a parent say about an unborn child, “I just want this child to be healthy.” Do you love the child any less because he/she is unhealthy? Perhaps this is the same thing. Some people think that statement means wanting what is best for the child, some people means it is a rejection of imperfection in your child as well as rejection of the child. I fall in the latter category so I never said it.
Read the link I gave above in #7. Like the author of that article, if there was a “pill” to “cure” him I would give it to my son. I have given him everything I can to help him.
It is the wishing he were different that is the real problem. How do you react to parents thinking the following about their own children:
“If she had only been taller, she would have been a great basketball player.”
“If he had been a little more good looking, he could have a girlfriend.”
“If she weren’t so introverted she could be a salesperson.”
“If he hadn’t made that big mistake at work he’d be running the company by now.”
“If only she didn’t have a weight problem, she’d be married by now.”
“If he just needed less sleep he could accomplish so much more with his life.”
I don’t want to look at my children and think that “If only he was better at ……” or “If only she wasn’t so……”
I go ahead and give my children all the advantages I can. They smell like trout because I give them fish oil because it helps the brain. But speech therapy or fish oil or a cure isn’t the point of my post. The point of my post is that whether my son goes through life with no speech therapy or with an operation that cures him, he is my son and will experience his life from his own viewpoint.
My daughter has tons of energy and initiative. This is both a good thing and a bad thing. My son is less assertive. This can be a good thing and a bad thing.
I have multiple children. If I wished away their weaknesses and could give them all the same strengths, I would have clones. They are individuals, though, and I love their whole package. I think that we should remember that when wishing things away.
July 31st, 2006 17:34
“I think a parent can dare to wish a child’s future to be different than it might otherwise be. ”
Eric, I’ve already responded somewhat, but I want to keep responding to this statement. I think parents should do their best with what they have to work with (resources, medical intervention, circumstances, etc.) and give the best future possible for their child. However, our children’s futures are not perfect.
In the July Ensign there is an article about a girl who was raped. This tragedy caused many problems in her life. Her parents had to adjust their mindset about their daughter’s future. When life “happens” you have to change your idea of your child’s future. You can’t hold on to the dreams you had before your children were even born.
Perhaps this is a no-brainer for some parents. But for others they have to face this idea that their children aren’t perfect and their children will have pain and experience failures and disappointments.
July 31st, 2006 17:44
Ana - I’ve been thinking about what you said about him needing to conform. Since there is no “cure” for ADHD you do your best to manage it. Don’t feel guilty if right now you think medication is the best course. Like my thyroid disease (no cure) there are many options for treatment. You just have to go with what seems like the best decision at the moment. Every once in a while you re-evaluate how it is going and if you should do things differently.
It sounds like you’ve looked at the pros and cons. If right now it seems like the right choice, don’t feel bad! And if down the road you make a different choice because things have changed, that is ok too.
Realizing that even treating my thyroid disease isn’t cut and dried really made me realize that treating depression or adhd isn’t a black and white issue and you don’t make a permanent decision anyway so you need to adjust treatment based on new circumstances.
August 1st, 2006 07:16
JKS - Your children smell like trout? There are non-fish extract alternatives for Omega fatty acids, but they are more expensive.
August 1st, 2006 13:29
> I have never liked hearing a parent say about an unborn
> child, “I just want this child to be healthy.” Do you love
> the child any less because he/she is unhealthy? Perhaps this
> is the same thing. Some people think that statement means
> wanting what is best for the child, some people means it is
> a rejection of imperfection in your child as well as
> rejection of the child. I fall in the latter category so I
> never said it.
I think you may have hit on what’s causing our disagreement.
Of course a parent should love a child the same whether it’s healthy or not. But I don’t see wishing a child were healthier as a rejection of the child.
Maybe it’s just my way of thinking. The reason I responded so strongly is it looked to me when i first read your post as if you were endorsing the same type of logic that leads some people in the deaf community to reject the idea of cochlear implants or to intentionally try to have deaf children. (How dare anyone try to take the deafness away and “cure” deaf people?) I think that’s an extremely wrongheaded approach in the deaf community, and I don’t think it makes much sense in other contexts.
When I was on my mission, I lived next door to a family that had an adult son who was autistic to the point that his only verbal communication was a sort of groan. I’m sure his mother loved him. From my point of view, there would be nothing wrong in her wishing he could actually talk. I would not think she loved her son any less just because she wished to hear her son speak to her.
August 1st, 2006 13:47
Audrey, lol, yes. My husband came home from work one day asked kissed our youngest and asked why she smelled like trout. I know there are non-fish oil EFAs, but when I did research a few years ago, I was led to believe that there was a higher concentration in what I was buying. My kids don’t mind eating it because I give them gummy bear vitamins afterwards.
Eric, if my kid was deaf I would get cochlear implants.
I just think there is a fine line between wishing the best for your children and wishing they were different. If you really love them, you have to stop and think about whether they will feel that love if they feel you wish they were different.
August 5th, 2006 22:25
> I have never liked hearing a parent say about an unborn
> child, “I just want this child to be healthy.” Do you love
> the child any less because he/she is unhealthy?
Have you ever been told that your unborn child has a birth defect? I have.
I don’t love him less because of it, I simply love him enough to wish he hadn’t been born missing an organ. There isn’t much worse as a parent than knowing your child has a problem you can’t fix, especially when they are tiny, newborn, and helpless. We want our children to have good lives, and even though struggles, emotional or physical, are part of life, we certainly wouldn’t wish them upon our kids. It seems illogical that someone would say they hope for an unhealthy child.