Children are universal. Everyone has been a child. Everyone knows a child… and even if they have not had their own children – everyone feels compelled to offer advice about kids. It may take a “Village” to raise a child, but for those of us with kids that are outside the norm we sometimes wish the “Village” would take a hike!
The members of the Apraxia-KIDS listserv have shared some comments made about their kids who are struggling to learn how to speak, and what many of their reactions have been. Unfortunately, many times the comments are so unexpected that our reactions make us look like a deer caught in headlights. I will present some of the most common comments and how to handle them, so that hopefully parents and care givers can be prepared and perhaps provide some education to the “Village”.
A Dose of Understanding by Us
Truthfully, apraxia and dyspraxia are uncommon. It is estimated that speech and language disorders affect 1 out 10 of people. It is then very difficult to get a definitive number on how many of people with communication disorders have either apraxia or dyspraxia, since they often have other diagnoses. The number would be much smaller than the total percentage of children receiving services for developmental disabilities (2%) or the percentage of preschoolers getting services for communication disorders diagnosed with a phonological disorder (10% of diagnosed kids, 10% of 10% would be about 1% of total kids… and apraxia/dyspraxia might be a percentage of that!).
Apraxia and dyspraxia are also not easily understood disorders. Deafness is a much less common reason for communication disorders than others (this includes ALL communication disorders), but it is a much simpler one to understand. A person can imagine the loss of hearing, but it is very hard to understand a disorder they cannot see nor even pretend to experience.
Not many people have had to deal with a child who needs so much help learning how to do something as “simple as learning how to talk”. It is no wonder that we get so much misunderstanding. Many times people will speak out before they think and are not trying to be deliberately hurtful or ignorant. This is when being armed with literature, knowledge and the understanding that you are not alone can go a long way.
Choose Your Battles
The first thing one has to figure out is if the person making the comment is worth “educating”. Most times if it is a stranger that the child may never encounter again, it is just sufficient to “nod and ignore”.
Now, for friends and family, these are people you may wish to become part of your support network. They are definitely worth educating!
[Side note: family dynamics can be an important factor. Be advised that sometimes it may be more useful to put certain family members in the same “village” category as “stranger/neighbor”. Families are wonderful things, but sometimes we find that families are made up of just mere humans.]
If the comments come from doctors, teachers, therapists or other folks who come under the heading “those who should know better”, then please refer to pages on the Apraxia-Kids site that may be more helpful. But sometimes it helps to be informed if the medical and educational personnel you are dealing with do not seem familiar with either apraxia or dyspraxia. Remember that the literature on Apraxia-KIDS is usually the most complete and current available.
Finally there are those that I would just refer to as “Poison People”. These may be neighbors, family or even medical care providers or educators. There just seem to be those folks who will not or cannot do anything but criticize, complain and try to suck everyone they meet into their morass of misery. I have decided that no matter who they are, these are people who are best avoided and the less they know about your child the better. If you do come across medical and educational personnel who are “Poison People” and not interested in being educated or even helpful, then replace them!
Here is a list of some of the most common comments with some suggested responses. Some of the responses are truthful and informative, but some are just plain fun (and perhaps a little mean).
“Einstein didn’t talk until he was 3, 4, 5 years old!”
Sigh… if only that was true. But it isn’t. There is an Einstein family story that relates Albert’s comment when he was told he had a new baby sister to play with. He said “But where are the wheels?” AND he was 2 years and 8 months old when he said that.
This is documented in two well referenced biographies, The Private Lives of Albert Einstein by Roger Highfield and Paul Carter, 1993 and Albert Einstein by Albrecht Folsing, 1997, translated from German by Ewald Osers. These books use papers and letters that came out after two people who were safekeeping his estate died. These people had worked hard to keeping certain aspects of Einstein’s life secret and tried to perpetuate many myths about his life… to the point of not allowing family members to publish their own viewpoints. The first referenced book is a fascinating and entertaining look into a less than functional family life, the second one deals mainly with his scientific achievement.
“Sorry to say, but that isn’t really true. It is part of the Einstein ‘myth'”
“Thank you for your insight. But I do not wish to take chances with my child’s development and that includes social and emotional — two things Einstein lacked in adulthood.”
More to the Point:
“I don’t really CARE what Einstein said or did as a toddler… we KNOW what is wrong with our child and we are doing something about it”
Touched with Humor:
“Do you really think my child is the next Einstein?!”
“I wonder what he would have accomplished with early intervention!”
A Bit of Mean Fun:
“Have you seen a picture of Einstein? Would you want your kid to look like that?”
“So and so’s brother’s wife’s nephew’s cousin third time removed didn’t talk until they were 3, 4, 5… etc. He’s just a late-talker. He/she will just start talking one of these days. You shouldn’t have him/her in therapy!”
This is related to the Einstein comments, and often comes with the Einstein bit and lately with an added twist a book by conservative columnist Thomas Sowell. While there are children with language delays, they are quite a bit different from kids with speech disorders (like apraxia), and even they benefit from good therapy after an evaluation from a qualified speech/language pathologist.
“We have received a diagnosis from a speech/language pathologist who has told us the difference between a language delay and a speech disorder. Our child has a speech disorder and is benefiting from therapy. If you wish to read up on the myriad types of conditions that can cause speech and language problems I will be glad to share them with you.”
“I used to hope it would be that way for us. But it is not going to be that easy.”
“He is trying very hard to learn to talk and we are very proud of him.”
More to the Point:
“What if he’s not ‘just a late speaker? Why should I take a chance on MY child, especially since early intervention is so valuable?”
“Okay, so if I pull the kid out of therapy under your advice… can I count on YOU to explain to her why she couldn’t get the therapy she needs when she comes home later in life crying because she was being picked on for the way she talks!?”
“Please explain why we should listen to you over a certified speech/language pathologist and a board certified child neurologist.”
A Bit of Mean Fun:
“So you are saying he’s just a late talker. Are you a late thinker?”
“He doesn’t have to talk, his brothers talk for him! You don’t talk to her! You don’t read to her! You don’t talk to her right! He doesn’t have to talk because you do everything for him! She is just being lazy, just force her to talk! If he wanted to talk he would.”
Some of the least favorite comments to members of the Apraxia-KIDS deal with the fact that even though we are dragging the kids into experts for evaluation and countless therapy sessions, the roots of the whole problem are our “parenting skills.”
The polite and informative responses presented above can also be used in this case, with the addition of:
“If I make him speak to get something I will only get a screaming frustrated child and that would accomplish very little.”
A Bit of Mean Fun:
(These insensitive remarks seemed to bring out the most vehement and frustrated responses.)
“If I was doing it all wrong don’t you think all the professionals would have caught that by now!”
“Our minds are melded together by ESP and I get him everything he needs before he has to ask.”
“How do you know we don’t talk or read to her? Have you been stalking us 24 hours a day?”
“Do you go around telling blind kids that they aren’t trying hard enough to see or do you try to take wheelchairs away from paraplegics because they could walk if they wanted to?”
“Is he/she deaf, retarded, autistic, dumb?”
Despite the fact that these may be legitimate reasons for a child not to speak, it is usually rude for a person to make these assumptions and the politically incorrect vocabulary often offends us.
“Speech and language problems are the most common reported disabilities in children and are not confined to being deaf, mentally disabled or autistic. Her/his diagnosis is oral motor dyspraxia. It is a neurological condition that is confined to the areas of the brain that control speech and is completely separated from areas of intelligence.”
A Bit of Mean Fun:
“Children who have trouble speaking don’t have a corner on the ‘dumb’ market!”
“You are so lucky to get free preschool! My kids don’t get door to door bus service!”
It is usually a comment like this that reveals that the person has no clue what it is to have a “different” child.
“Early intervention is a cost effective way to work with these kids. It is in the school’s best interest to try to get them caught up before kindergarten. Luck has nothing to do with it.”
“Personally, I would have preferred that he/she were typically developing and not need special education services.”
More to the Point:
“Don’t you think I would rather have my child possess the ability to communicate with me and the people around more than I would to have ‘free preschool’?”
“Free preschool hardly makes up for the fact that I’m paying between $80 to $200 per week for therapy not covered by our health insurance.”
I would like to thank all the members of the Apraxia-KIDS listserv for sharing their comments, stories and frustrations with the “Village”. Unfortunately I couldn’t get everything in, nor could I touch on every insensitive comment out there (it would take up to much storage space!). But I hope I got most common of them, and this will make many of you more prepared when confronted by something out of the blue.
I would also like to recommend a wonderful book with personal stories by parents of children with disabilities (including a couple from Apraxia-KIDS). Many of the stories deal with the subject of this essay, but more importantly it reminds us that we are not alone (plus it has lists of several organizations for parents). The book is You Will Dream New Dreams, edited by Stanley D. Klein, Ph.D. and Kim Schive (ISBN 1-57566-560-3).