When You’re Told Your Child May Be Less Than Perfect

I see and hear about a lot of babies in my line of work.  As a childbirth educator, I count myself most lucky when I get to attend one of my students’ births, and second-most lucky when a mom or dad from one of my classes thinks to call me after their baby is born and tell me how things are going.  Truth be told: most newborn babes are kind of goofy looking.

You know what I’m talking about:  cone heads, scrunched up faces, puffy eyes, swollen genitals…most newborns certainly do not resemble their futures selves one iota.  And, while the occasional new mother or father experiences the perfectly normal process of falling in love with his or her newborn over a span of days to weeks…most parents of new babes fall into love at first site.  No matter WHAT their son or daughter is like upon birth.

The above holds true for babies born with no physical malady at all, and certainly remains true for darned near all parents whose children may be born with any wide variety of physical anomaly or handicap.

See, the thing is: in our eyes, our children are perfect just the way they are.  We are genetically and psychologically programmed to feel that way.  That’s where the unconditional love thing comes in.  We want to believe our babies are without imperfection and until the child reaches, say eighteen months or two-years-old, when they purposely begin testing their parents, their surroundings and their own control within those surroundings…we maintain that belief in our child’s perfection within our heart of hearts.

So how is a parent to handle it when someone suggests that maybe, perhaps, possibly, their child is not perfect?  That something is wrong with him or her.  That something went awry during his development in utero, or with during development after birth?  What then?  How do we rectify that information against our innate drive to believe in the purity of our little cherub?Our youngest son, at twenty-seven-months of age has a speech delay.  When he was eighteen-months-old we’d started to notice it.  Even before he turned two, he was evaluated as having a 50% speech delay – placing him at the language development level of a 12-month-old.  He’s been in and out of speech therapy but all along, Andrew and I tried hard to maintain the belief that he is just a “late talker” and that his language development would catch up without incident…given enough time.  And, of course, we’ve had many well-meaning folks tell us anecdotes about a child they know–perhaps even one of their own–who also progressed slowly through his or her speech development, who “turned out just fine” without any therapy at all.

Last week, I met with a new speech therapist.  One who comes highly recommended to us by several resources in our community.  This therapist:  she is specially trained in treating a variety of speech disorders.  One of these is Apraxia of Speech, or Childhood Apraxia of Speech (CAS). She recommended we read a book, The Late Talker (Agin, Geng, Nicholl) which specifically targets families of children with apraxia.

I read the book.  I underlined phrases and paragraphs, dog-eared pages, and circled quotations.  There’s no question our son harbors many of the symptoms described in this book.  Certainly not all of them.  But many of them.

But here’s the kicker:  CAS is described as a “serious neurological disorder.”  It is suggested to be a life-long ordeal that, with plenty of speech therapy and perhaps lots of Omega 3 fatty acids, can be greatly improved upon, but not necessarily abolished all together.

How does one know if their child has CAS?  Well, there are LOTS of signs and symptoms, but here are some of the main ones:

* a child with a significant gap between their receptive language (that which they understand) and their expressive language (that which they can speak)

* a child who omits sounds in words–such as the ending consonant, or adds others in, or has little to no speech skills at all by an age he/she ought to

*a child who signs, gestures, grunts, etc. to get their point across in the absence of forming real words

*and the list goes on…

The average two-year-old should have about 100-200 words in his or her vocabulary.  Our son has less than twenty and many of those “words” are only word approximations.

As a writer, I take for granted the voice with which I write.  I take even more for granted my ability to vocalize that voice – those thoughts, feelings, phrases and paragraphs that make up my writing.  I can’t imagine how it would feel if my head was full of thoughts, wishes, desires, statements, etc…and I physically did not have the means to verbally express those things.

This is apparently what it is like for someone who has apraxia.  Can you imagine anything more frustrating for a child who is in the PRIME speech development time of his life…and he can’t even form a sentence as simple as, ‘more milk, please.’

Our little guy is so sweet, mild mannered, silly and for the most part, compliant.  Yes, he’s two, and so he’s doing lots of typical two-year-old things…but he’s NOTHING like some two- and three-year-olds I’ve known.

We’ve been told by a person who seems to be extremely well-trained in her field; her assessment corroborated by a reasonable book written by a mother, and a former Speech Language Pathologist-turned Developmental Pediatrician, that our son is less than perfect.  That he has a “serious neurological disorder of motor planning that affects his ability to speak.”  We have been told that he will likely need years of speech therapy.

But you know what?  I don’t see anything “severe” about my son.  I don’t see him as any less whole than I did before last week.  He’s still perfect to me.  And even if he does end up needing years of speech therapy, he will still be no less than perfect in mine and Andrew’s eyes.

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9 Comments

Filed under Kids, Living

9 responses to “When You’re Told Your Child May Be Less Than Perfect

  1. I sympathize with your struggle. Please don’t take anything I say as second-guessing anything you’ve said or done because I have a lot of respect for you as a very intelligent person.

    But WOW! 100 words at 2 years old? I’m trying to remember if any of my older kids had 50. I’m sure DURING their second year they got up to 100, but AT 24 months? My youngest son is 19 months now and he can only say “Da-Da.” That seems normal to me but what would they say about him if I had him tested? Am I fooling myself?

    My first thought is, do any of these doctors and experts have any incentive to say that a kid is fine, don’t worry, please don’t bother to come in and spend lots of money on therapy?

    My third child would go in and out of a pretty severe stuttering when she was three and four. It worried me but I was more worried about what would happen if I asked for help. Maybe I did her a disservice and it was dumb luck that she came out of it and talks fine now. I just worry that once they get a person into the system, they have no incentive to let them out again.

    Maybe I am just paranoid. I would never tell someone not to pursue treatment when they feel it is necessary. But my instinct puts together “27 month old” and caring, involved parents and says, give it time. But maybe I’ve got my head in the sand. I just see more and more labels and treatments coming out of the woodwork to put people in more and more boxes, and it makes me sad and a bit scared.

    I wholeheartedly agree with you that your son is and always will be perfect, no matter what happens or where he falls on their developmental charts that they somehow magically decided were the way everyone should be.

    I hope my comments are not disrespectful, like I say I have every confidence that you are doing what is best, and I appreciate being able to have this conversation and share our situations, because the feelings we have surrounding them, about our kids being labeled “not perfect,” are so powerful and it is good to have financially disinterested (but emotionally interested!) parties to talk things over with.

  2. Sorry to be so long-winded, but I’ve spent all morning worrying about your son AND mine… I checked my other three kids’ baby books and they did know a few more words at this age than Hank does. He says “Da-da” and “Gar-gar” (that’s the nickname we have for his brother Garth) and “hot.” My husband reports that when I am not home he says “mama.” Perhaps because he is number four I haven’t been giving him as much attention. Perhaps there might really be a problem. In any event, it is good that you wrote such a timely post so that I can begin to pay more attention. Thank you.

  3. Elena,

    Your comments are so thoughtful and very much appreciated.

    I agree with you that it is a hazard to pursue attention/treatment that may end up putting a child in a box. Unfortunately, a big part of why that is a problem is insurance…and the tendancy to deny coverage for ‘reexisting conditions…in the event of an insurance plan change.

    Regardless of what label Gabe does or does not receive, we recognize that his speech development has been quite slow and also quite difficult. One thing I didn’t mention about him, that is also quite classic for apraxia, is that he will master a word and days or weeks later completely lose it from his vocabulary as if he never knew how to say it in the first place.

    We meet again with the speech therapist again next week, and will put a few more of the pieces together then.

    Keep me posted on your little guy…
    K.

  4. Cheryl Peterson

    I tend to agree with Elena. I don’t think there is anything wrong with your child. My son had about 20 words until he was three then just started talking. He is now 10 and has been a 4.0 student since grade 2. You talk about how your son has many of the symptoms of this thing labled CAS but sometime do a google search on your symptoms when you have a cold. Based on a few of the cold symptoms you can find you could have anything from HIV to Hunta Virus! You can have yourself convinced by tomorrow you face certain death. I think you may be spending way too much time looking for a cause. If you look hard enough you will find one and sounds like you did. CAS, ADD, ADHD, AD/HD… do you see a pattern here? The medical commmunity is almost out of cute initials to depict all the things that afflict us.

  5. Cheryl,

    While I appreciate your taking the time to offer some thoughts on the matter, please don’t assume you know enough about my son, based on my one single post, to diagnose him as having “nothing wrong.” The signs and symptoms listed above are a small representation of what is going on with him.

    I agree with you and Elena both that our medical community (of which I am/used to be apart as a PA) over diagnose people often…but the flip side is that often the medical community also dismisses symptoms in people that they can’t explain, and therefore don’t know what in the hell is going on.

    As parents, most of us want the best for our children and, some of us, put a decent amount of effort in looking ahead to our children’s future based on what we witness today. After working diligently with our son for six months on his speech development he has made only some progress in that department while his overall intelligence, fine and gross motor skills, etc. have soared. There is a drastic disconnect within him that we can’t ignore anymore.

    While at risk of appearing anxious to defend my choices as a parent, mostly I need to make it clear that NO ONE knows what my son does or doesn’t have better than his parents. The countless pieces of advice that suggest, “he’ll be fine…don’t worry about it,” may be 100% correct, or they may be just as dissmissive as the majority of the medical community we have interacted with since becomming parents over five years ago.

  6. Cheryl Peterson

    Good luck.

  7. wizzardmom

    I too have a son who will be two in April 2009. He doesn’t say too many words at all!! He grunts, and gets upset — has a temper like nothing I’ve ever seen before. He is number 5 for me, and I had a feeling that because he wasn’t talking that there was something to be investigated. He qualifies for a program close to us, that will help him in his Expressive Language area of development. We’re trying to use signs with him, but I keep forgetting the signs and … on and on… but as a mother I still love my son, but I also knew that in order to keep my sanity I needed to get HELP. So hopefully now, we can get some intervention, and hopefully get him back on track soon!! Best of luck, and so what if they aren’t completely NORMAL, because are any of us really?? We have instincts, sometimes we’re right, sometimes we’re wrong and sometimes, we’re just blinded by our unconditional love, and sometimes it just might be that we just aren’t educated about what “should” be. We just need to know our child and their personality and when things aren’t coming together and not working right, then getting help, is OKAY!! As long as he still knows that he’s loved that’s all that matters. Best of Luck to you and your family.

    • Dear Wizzard Mom,

      Your comments are poignant and, most importantly, full of love for your son!

      Since writing that post, our son (now 30-months-old) underwent an extensive evaluation and was, without a doubt, diagnosed with Childhood Apraxia of Speech. We have found a fabulous new speech therapist (who happens to have a bulldog named Stella…who Gabe absolutely ADORES…and we are seeing HUGE progress in his speech development!

      Our therapist recommended we read the book The Late Talker (Agin, Geng, Nicholl) and I can’t recommend it enough! The book makes a strong case for supplementing the child with speech development problems with Omega 3 fatty acids…which we started doing a month or so ago. As with many of the anecdotes in the book, we have seen a proverbial BOOM in Gabe’s speech! (He started out in the 97th percentile for cognition/receptive language–that which he understands– and the 3rd percentile for his expressive speech. We now understand, this is very typical of kids with apraxia: there is a HUGE discrepancy between what they can understand and what they can say.) I’d HIGHLY recommend the book to anyone who’s trying to discern whether or not their child is “just a late talker” vs. when there is an actual neurological brain disorder going on that PREVENTS the development of speech.

      Lastly, re: remembering signs: go to the American Sign Language Pro website (http://www.aslpro.com/cgi-bin/echo/aslpro.cgi) for video clips of common sign language words and phrases. This helped us TREMENDOUSLY in teaching our son the signs he needed to get himself across!

      Good luck. If you have more questions/thoughts, etc. drop me an email: kimmelin@adozeninvisiblepieces.com
      ~ Kimmelin

  8. Amie

    WOW! Your post takes me back to the first time we heard the term ‘apraxia.’ My son is now 3.5yo & is a “classic” case of apraxia. I’ve never read the book you mentioned but now I will. As we get closer & closer to school age with him I can see where the word “serious” can apply. 🙂

    Best of luck to you, your son & your family.

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