My Wonderboy

September 29, 2008 @ 1:04 pm | Filed under: Special Needs Children, Wonderboy

The other day I mentioned that Wonderboy got another new diagnosis this summer and I have been wanting to write about it but needed to think through the privacy issues first. After taking some time to ponder, Scott and I agreed that this is something just as important to write about as the challenges and joys we’ve experienced as a result of our boy’s hearing loss, and that blogging as frankly about this new challenge as I have about other things is for the good—Wonderboy’s, ours, other families’. I know how much I have benefited from hearing other parents’ stories and advice over the years—during Jane’s cancer treatments, and Wonderboy’s early medical adventures, and during all sorts of challenges related to nurturing special needs children.

Information-sharing is a very good thing.

I said “this new challenge,” but the only thing new about it is that doctors put a name on what I had already been suspecting for some time. Wonderboy has mental retardation.

During my son’s first two or three years, any gaps in his comprehension were easily accounted for by his hearing loss and speech delay. But this past year, especially as Rilla (who is two and a half now) has zoomed past Wonderboy developmentally in many ways, we wondered more and more if there perhaps there was some other piece of the puzzle yet to be named. He is four years and nine months old, but he still doesn’t recognize colors by name—though he’s been signing color words since he was a baby. He doesn’t understand days of the week, is only just beginning to grasp “yesterday, today, tomorrow,” can’t count past three or four, enjoys baby board books but isn’t yet ready for storybooks.

He’s a dear, jolly, affectionate soul, the joy of our household. I’m not sure when I knew for certain that he had some kind of cognitive deficit overlaid on the hearing-loss challenges. I first used the words “mentally retarded” tentatively, questioningly, in an IEP meeting last winter. (He receives speech therapy and audiology services from our public school district but that’s all.) My words were met with dead silence around the table, and for once the school district “team members,” who usually have so much to say about everything, said nothing at all. I thought perhaps I’d blundered, had used a non-PC term, and after an awkward pause, the discussion moved on: we were there to talk about speech therapy and audiology, and nothing more was said about a cognitive deficit.

At the time I already had him on a waiting list for an in-depth evaluation with the behavorial/developmental clinic at the children’s hospital: an appointment Wonderboy’s geneticist and pediatrician had been strongly recommending for months. The wait was very, very long: the evaluation did not occur until this past July. By then we were reasonably certain in our own minds that autism was not on the table: based on everything I’d read, Wonderboy did not meet the social/communicative criteria for an autism spectrum diagnosis. And sure enough, the four-hour battery of tests confirmed that he is not on the spectrum. “But there is a cognitive issue,” the doctor said, “something you need to know…”

I’m not sure what official diagnosis I expected, but I know that the words themselves, when they came, even though I’d had my own suspicions, were a shock—not the condition so much as the terminology.

“Mental retardation” is a label with an awful lot of social baggage, especially for people of my generation. Was there anything more insulting you could call someone in grade school, or be called, than “retard”? And twenty, thirty years later, that slur is causing just as much pain and controversy as it ever did.

Being something of a word person, I was fascinated by the reaction the words got when we told friends and family about the diagnosis. Honestly, I think I had to spend more time talking to people about the terminology than the condition it describes. Even the Wikipedia entry begins with a long discussion of the various terms that have been used and discarded over the years—discarded after common usage coopted a clinical term for use as an insult. First “cretin,” then “idiot” and “imbecile” (indicating differing degrees of cognitive disability), then “moron,” a word invented by doctors in the early 20th century, and when that became a slur like the others, “mentally retarded” came into use.

I learned that the American Association on Mental Retardation renamed itself in 2006: it is now the American Association on Intellectual and Developmental Disabilities, and its preferred terminology for mental retardation is now “intellectually disabled.”

I confess that sounds a bit jargony to me. It’s hard to imagine using it in conversation. Also quite a mouthful is the broader term “developmental disability,” which does encompass Wonderboy’s physical and cognitive delays. I am seeing that term used quite a bit online, on special-needs forums and such. I suppose it lacks the emotional baggage of “mentally retarded,” but for us it’s a moot point anyway, because here in Southern California at least, “mental retardation” is still the clinical term in common use: it’s what appears on my son’s charts now, and whenever I walk into a doctor’s office and am asked, as I always am, “what’s his diagnosis,” among the list of medical and developmental terms I must rattle off is, now, mental retardation.

[2012 update: Now the accepted term, both in educational and medical circles—at least here in San Diego—is "cognitive disability."]

Whatever you call it, the fact is that my boy’s brain doesn’t work the same way most four-going-on-five-year-olds’ brains do. At this point, he has great difficulty grasping abstract concepts. His language skills are actually quite good—as long as we’re talking about concrete things. Most abstract concepts seem to elude him right now. Developmentally, he is much more like a two-year-old than a four-year-old.

And he is wonderful. His joy, his eagerness, his abundance of love and affection—these are the qualities that melt me a hundred times a day, the qualities that make him uniquely him. He is his sisters’ darling. The way he laughs and literally quivers with excitement whenever one of us has been away for a few hours and returns home: his happiness is completely infectious, and I’ve seen him set whole rooms of people to smiling.

This is not to say there aren’t challenges: there are many. After the diagnosis, when fuzzy suspicion became clear understanding, I realized that I pretty much have two-year-old twins at the moment. No wonder I’m always wiped out! Pregnant, pushing forty, with toddler twins: you better believe I began cutting myself a whooole lot more slack after I fully grasped the reality here.

For me it is always better to have a name for something, better to have a firm diagnosis to wrap my head around. And so although those words were initially a bit of a jolt, in many ways they made life much easier.

I have volumes to say about all the different aspects of this newly defined reality, and much yet to learn. I learned a long time ago that the blessings that come along with a special-needs child are immense—and immensely beautiful. I love my little guy to pieces. Doesn’t that grin just make you melt? Oh, he is the sweetest boy! I was laughing last week because four separate people—two different PTs who saw him on separate days, his speech therapist, and her assistant—all remarked to me, spontaneously, independently, a variation on the same exact statement: “Your son is so much fun to work with! What a sweetheart he is.” :)

Ain’t that the truth.

Good grief, somebody clean that kid’s glasses!


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Comments

43 Responses | | Comments Feed

  1. Your honesty is a blessing to the world. Praying that you can handle the challenges. Your family certainly has the love and faith to shelter your son and help him grow. He really does have a face that melts your heart.

  2. Quite a lot to take in! I’m glad you have an official diagnosis…there’s something reassuring when you have your parental suspicions confirmed. What a sweet, sweet boy! I’ll pray for your family as you continue this journey.

    Interesting that mental retardation is still the official term. The Knights of Columbus in Virginia have an official fundraiser KOVAR: “Knights of Virginia Assistance for the Retarded”. They have been criticized so much for using that “derogatory” name, but they have insisted it’s official.

    And when I think of the word retarded, I think of the musical/Italian term Ritardando, ritard (rit) – gradually slower.

  3. Dearest Melissa :)
    All I want to do now is to hug you tight – along with your little Wonderboy.
    You are so brave – and sharing your thoughts and feeling with all of us here is just a small part of it.
    But Melissa – “retarded” ?!?!
    Wonderboy simply has his special way of growing up – he looks nothing of the sort. He is such a sweet little fellow – and his face is full of smile – and a bit of mischief – and telling us “here I am – Very Special and Important Person” – so please treat me like one” !

    I pray everyday for you and the Boy – and I know the Good Lord will continue to keep him – and you – and all of your Gang – in His Special Care.
    Be Blessed –
    Love – Helen

  4. I’m impressed with your ability to be so upfront about all this, I truly am. My oldest son struggles with autism and some cognitive delays. In his case, there are a lot of skills that show up unexpectedly and, because he is autistic and struggles with communication, it’s hard to know what he’s got a grasp of and what he doesn’t. Many times he surprises me, and many times I’m disappointed. I’m still struggling to admit his difficulties to myself and others. It stings most of the time still.

    Anyhow, I thought you’d enjoy this little comic from “For Better or for Worse”. In it, April tells Shannon, her retarded friend, how the term “en retard” is french for “late”. In other words, on its way but its not there yet. That’s the way I think of my son and that’s the way I’ll think of WonderBoy – he’s on his way, just a little late. You can find the comic strip here. (http://www.fborfw.com/strip_fix/archives/002350.php)

    Many blessings on your family’s continuing journey.

  5. Dearest Lissa,

    I have been thinking this over for the couple of hours since I read it, and honestly only one thing comes into my heart. But I don’t know if you’ll understand, so please forgive me if it sounds awful or insensitive …

    I am so pleased Wonderboy is mentally retarded. Genuinely, deeply pleased. He has so much to deal with in his life, so many stresses, pains, and hurdles. But he has been blessed with a beautiful innocence of understanding. I am sure the retardation is like an angel’s wing, lifting him above the misery that might be his if he better comprehended his condition – it is the thing that allows him to be so joyous and free.

    I am sorry for your pain, and the challenges you face. But I can also tell you have a wonderful perspective – you know that what makes Wonderboy so precious has nothing do to with his brain, but everything to do with his soul. I have no worries for him in his life, with such a family supporting him.

  6. Putting out that positive description of your son’s mental retardation is a profoundly political act. In a good way. Things don’t change unless we change them. Slowly. Confidently. May you have all the support you need on this journey.

  7. I am in awe of you and your family. You are all so blessed to have one another. And we are so blessed that you share Wonderboy with us. In this way, he is able to bring joy to all of us as well.

  8. Oh he’s so beautiful! I love when you share pictures of your family. :)

    I can’t add anything that hasn’t been said better than I could ever hope to, although I wish you could see the love that’s in my heart for all of you even though we’ve never met. :)

    God bless you on this Michaelmas!

  9. I am so, so glad that you decided to write publicly about this, Lissa. You have been so generous towards all of us by letting us get to know Wonderboy on your blog. He is a beautiful little boy. I am blessed by your family and your sharing.

    Love, Rebecca

  10. Oh Lissa, isn’t it grand having ‘two year old twins’? I’m sure we could swap some funny stories as our ‘twins’ are so close in age. That was a brave and beautiful piece of writing – thanks for choosing to share. And you sure picked the right name for your special boy, right at the start. God bless that dear boy and all of his dear, loving family!

  11. I remember when my son was diagnosed with autism. I remember well the jolt even though I was prepared for it. Thank you for a wonderful post about your sweet boy. {{{Big hugs}}}

  12. Thank you for having the courage to share this, Lissa.
    Clearly, God knew what He was doing when He put Wonderboy into your family!

  13. Lissa,
    Thank you for sharing. Your family, and that special little guy, are in our prayers. Give him a smooch for me will ya?

  14. I admire you for sharing this story and for being able to explain your feeling so articulately. Blessings on you and your amazing Wonderboy.

  15. Hello Lissa, longtime lurker here, hoping you won’t mind if I de-lurk . . .
    Speaking as a primary school teacher, what occurs to me is how very very fortunate your little lad is to be where he is. Where could he be better off than in a loving family with patient sisters (and possibly brothers later on!) who can gently help him to make sense of the world he’s in, nurture and protect and strengthen him, and enjoy his grace and joy and innocence as a family delight as well.
    Cognitive delay can be a serious issue depending on the degree of functionality and the extent to which life skills can be instilled, but how much harder it would be for him if you were to place him in the harsh mainstream school environment – I see so many children in his situation, children with mild to moderate learning difficulties (our term for mental retardation) baffled and bewildered and unhappy because there is no decision from their family to give them the extra nurturing they need while they grow – instead they are shoved into mainstream education in the interests of political correctness or financial expediency and flounder miserably as the world overwhelms them. Of course you won’t want to over protect him – but how great that he can develop at his own pace.
    I am sure as you find out more about your lad’s difficulties you will be able to make the relevant decisions, but I would like to share that my moderately learning disabled cousin has, with the patient care of two great parents, been able to lead an independent and fulfilling life. Perhaps you might also like to remember the old English descriptions of children like Wonderboy – ‘God’s innocent’ ‘God’s baby’ and ‘Simple’ with its beautiful connotations of holy grace and simplicity. You say he already brings joy to people he meets – how many of us can say that?
    Hope you don’t mind me commenting.

  16. Lissa – he will bloom with all of you, maybe on a different path, in a different way and at a different speed, but bloom nonetheless- and beautifully, I’m sure :)

    Hugs to all of you, I’m sure this was a difficult post, and as usual, you did it with grace all ’round…

  17. Beautiful post about your beautiful WonderBoy. It’s been too long since I’ve seen him! :-)

  18. Just beautiful Lissa, he’s a saint in the making, especially with parents like you and Scott, not to mention his sisters! He’s totally perfect and beauiful, sweet boy!

  19. Ditto what JoVE, and Jennifer, and Rebecca, and Joanna-in-England, and Amy said. Beautiful post!

  20. Thank God! It crossed my mind that you were about to divulge some new life threatening condition. Thank God you still have him and thank God he has all of you!

  21. What a beautiful and courageous post. I echo what so many others have already said. How wonderful that Wonderboy has you all, and how wonderful that you have Wonderboy!

    And thank you for sharing your beautiful family and your honest journey with many of us who have never met you…but feel like we know you.

    That picture is indeed heart-melting. Smudged glasses and all. :-)

  22. I’m glad you posted about this… Now we’re one step closer to everyone feeling this way about this kind of diagnosis – I mean, still seeing the person, and still seeing the wonderful positives they give the world, despite their differences to the ‘norm’

    hugs for you all

  23. Wonderboy looks like one of my kids–smudged glasses and all. :)

    I appreciate the frank discussion about the use of the word retarded, but I do hope you’ll find other words to use with Wonderboy.

  24. Like J, I was really scared about what this diagnosis might mean. I’m so glad that Wonderboy is well!

    I’m sure you’ve come across the Pioneer Woman’s blog, but just in case, I’m going to give you the link. She often posts about her “retarded brother Mike” and is unapologetic about naming him as such.

    http://thepioneerwoman.com/2006/06/i_have_a_retard.html

    He has a wonderful life as an adult, and everyone he comes across loves him.

  25. Thanks for all the comments, everyone. :)

    I appreciate the frank discussion about the use of the word retarded, but I do hope you’ll find other words to use with Wonderboy.

    There’s really no reason to use any term at all with him right now–wouldn’t mean anything to him. He’s just himself. :)

    Early on, I did have a few friends express concern over our using the term at all, in any context. But my take on it is this: treating those words as a taboo only adds to their stigma, and there is no reason for them to carry a stigma at all. And since my kids are constantly overhearing me on the phone with doctors, therapists, the insurance co, etc, not to mention accompanying us on plenty of dr appts, they’ll hear the term a-plenty. And I would NEVER want to give them the impression it’s something negative or shameful, not to be talked about. It is what it is, and it isn’t something bad. It’s something out of the norm.

    Cate, I DO know and love Pioneer Woman’s stories about Mike!!! In fact I was happy-weepy over one just the other day and left her a gushing comment. That picture she posted of herself and Mike as babies is too, too sweet.

    Joanna-from-England, I too feel immensely fortunate to be homeschoolers and to have all the flexibility we have. I have felt that all along, genuinely reveling in the way the whole family was able to be a part of his physical therapy and sign language. In fact I have loved learning ASL so much that at times I felt almost guilty about it!

  26. I kind of know what you are going through, except I don’t have a diagnosis for my son yet. We have been told numerous labels, but have yet to figure it out for sure. I am like you, a label would give me something concrete to work with. Except, it really doesn’t change anything. My son is who he is and regardless of the label, we deal with him and his behaviors and problems. the school wants a label though. he is the only one of mine I don’t homeschool. If I homeschool him we lose all services. Right now he really needs his speech and OT, so he is in Kindergarden. I have no idea what we will do next year. I guess that depends on if we end up with the correct label or not. I think Wonderboy is a pretty great kid and very lucky to have such great parents.

  27. He looks like a delightful little guy. He really, really does.

  28. There’s really no reason to use any term at all with him right now–wouldn’t mean anything to him. He’s just himself.

    Amen to that! :)

  29. Hugs to you Melissa! I think wonderboy is so lucky to have you as a mom.

    And I think he is the cutest thing, and he does have a wonderful, infectious smile!!

  30. Praying for you. By the way, my 12 year old, who now loves to read, count etc, took till almost age 9 to get “time” in any form as a concept. It was just sailed right past her. In fact, for a few years I put a Hershey bar in her lunch on Friday so she remembered she spent the next two days at home with me :) God blesses us so richly thru the trials we face–your son’s hearing loss gave you new insights. That he will learn differently, and to different levels, will only add to your appreciation of life. He is blessed to have such a Mom!

  31. Thank you for writing about this from the viewpoint of a beautiful boy who has a diagnosis, rather than a diagnosis that overtakes the child. Our society takes a stance of shame, pity and a desire to fix what does not need repair, instead of giving children patience, love and acceptance. The three things we all as human beings desire. We unschool our amazing, loving, laughing 8yo boy, who also happens to have developmental disabilities. (the term where we live;) Thank you for writing!

  32. Melissa –

    I am not a crier, but this post made me weep. Your Wonderboy is a special love letter from God to your family and to the larger world. Thank you for sharing him with us.

    I loved the comment about music. Slow down and take life at a different speed. There’s a lesson in that for all of us.

    – Kelly

  33. [...] don’t often write about my family, but I was deeply touched by a recent post by Melissa Wiley concerning her son’s recent [...]

  34. I am glad you wrote about this but I didn’t know when you would! I spend my days from monday to friday with students with an intellectual disability. It is truly fun but I do realize sometimes that we are quite isolated on our ”planet”. I do suspect that most employees at the school have a direct experience with mental retardation, a sister in my case. The stigma is still very strong (why is it that whatever word is used always becomes an insult and then needs to be changed?)but a society can be judged on the way it treats its more vulnerable members. I hope your son becomes a good companion in life as that is what I wish for all of our students (I hope it makes sense – I am translating from french here). Also, I do not want to be hard on the parents as I cannot begin to imagine how painful what they live can be, but many, many times, because of feelings of guilt among other things (fatigue?), they do not apply the basic principles of discipline they would use with a normal child. Well, it only adds to the children’s issues if they are made to believe that simple rules do not apply to them… I will be curious to follow your other posts on the subject,your son looks very sweet and may not be complicated to raise at all!

  35. Melissa, the first time I read this post, I didn’t know how to write my reaction. My reaction isn’t about your diagnosis though, since life is all about me me me… it’s about how I feel about the possibility that our own little guy has cognitive issues. Along with the diagnosis of autism this past February, we also heard that there is a distinct possibility that R has mild to moderate cognitive impairment. Don’t you just love the fancy words? And I have been struggling with that ever since. We don’t know yet – it’s hard to be certain when there is a communication gap. But I wonder.

    I’m glad that you know. I’m glad that he has you. I’m glad that you were so open. It helps sometimes to hear others working through things.

  36. Lissa-

    Reading this post left me with such a feeling of awe. To understand life in the terms you have described is so beautiful. To look at the life of a child and simple take that child as he is, is truly the definition of unconditional love.

    If everyone accepted their children as they are- no matter where they are on the spectrum of cognitive or physical abilities, the world would truly be a better place.

    Thank you for your honesty and your profound insight.

  37. You know, as someone who grew up with a mentally retarded sister, I think ‘intellectually disabled’ sounds worse, and I think it’s wrong.
    My sister may not have been able to figure out how to run a checking account or keep a job, but she wasn’t ‘stupid’. Some of the most profoundly deeply spiritual conversations I ever had were with my sister who was “mentally retarded”. I can’t explain it except that God reveals to the little children that which he hides from the rest of us.

    How I miss her! Especially since today we celebrated her daughters birthday today, 8 years she has been with us, and I’m so grateful God has given me this treasure to remind me what a beautiful human being Kathy was.

    God bless little Wonderboy.
    God bless you and Scott as well Lissa…you must be one of God’s favorite people since he entrusted one of his special angels to you.

    love mary

  38. That’s just the dearest picture of your son, Lissa. Have you ever heard John Lennon’s song “Beautiful Boy”? I love that song.

    Thinking of y’all,
    Susan

  39. Melissa,
    Your post touched me deeply. I grew up with my beloved Aunt Nancy who was severely mentally retarded. My mother was one of her primary caregivers, so Nancy was more like my sister than my aunt.

    She brought so much joy into all of our lives. She was not able to speak or walk, but she let us know that she loved life.

    Growing up with Nancy inspired me to become a teacher of mentally retarded children.

    I loved working with my students. So many of them truly embraced life with joy and excitement over the things we take for granted.

    Your Wonderboy is beautiful. I can imagine him lighting up every room he enters. I have an idea of the pure joy he must bring you each day!

    Praying for rest and energy for you as you carry your precious baby and care for your little ones.

    Thank you for sharing your heart.

    Blessings,
    Shannon

  40. [...] We kept on learning new stuff about our sweet Wonderboy. [...]

  41. Wonderboy is a wonder, indeed. Who makes up these rules, these standards? These words that become stones to be cast, to hurt, to devastate? Wonderboy — from his picture alone — is a beautiful blessing, who is happy and well loved. Can we all say that? I can’t, and I have a fairly high IQ. He is all the important things — the REALLY important things. And he is fortunate enough to have a mother who “gets it”. I have a granddaughter with disabilities. I don’t see them. I see her smile and her beautiful blue eyes and hear the music of her laughter. This life is difficult enough without hanging labels on people and deciding upon standards — who is ‘normal’ and who is not. If we must judge, why can’t we just judge by how much a person can love? How kind is the person? How generous? It doesn’t matter much that you can solve a calculus problem if you have no love in you. This is a lovely article, and I’m glad I followed Stephanie Pina’s link to read it. All the best to you, and the well named Wonderboy.

  42. It’s wonderful that you have the courage to be so open and honest. I have a loved one with a disability so stigmatized I can’t write openly about it, even though the light of day is necessary to end the stigma. Revealing it will have such serious ramifications on that person’s life, it stays hidden. Your Wonderboy is a marvel and very blessed, as are you. He is simply marching to Thoreau’s different drummer, “Let him step to the music which he hears, however measured or far away.”

  43. Hi Lissa,
    Thanks so much for your story. I really like your take on not letting the words “mentally retarded’ have negative power. I agree that the more you are honest about the situation the better it all works out for everyone. I know with my daughter April and her vitiligo we have found that the more upfront and honest we are, the more accepting others are. It’s nothing for April to be ashamed of and she doesn’t waste time hiding the truth. If you have a minute you may want to visit my facebook page, Different Just Like Me, and share just a bit of your story, and maybe a link to your blog. The page is to help others by sharing our stories of diversity and acceptance. https://www.facebook.com/pages/Different-Just-Like-Me/179403388747666?fref=ts
    Thanks again for your story,
    Lori