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Coping and surviving when your child won’t speak

Maureen used to be obsessed with baseball -- and then she had children. After she welcomed her son, Charlie, and his extra chromosome, she discovered her passion for writing about Down syndrome and disability-related issues.

With two...

The long, agonizing silence

The moment when a child who doesn't yet speak is trying to communicate is a collision of the child’s frustrations, the mother’s overwhelming desire to understand and the underlying pressure on both to remain patient.
Child with Down syndrome and mom

Charlie woke from his nap in a cheery mood, which isn’t unusual but always is appreciated. As we padded down the stairs, I whispered, “What do you think? Do you want to have a snack?” 

My children’s reactions to words related to food have always reminded me of our family’s dog’s reaction to the word “walk.” She would shiver and shake with excitement as she prodded the invitee with her nose and danced between the doorway and her escort.

But this time, Charlie had a glint in his eye. As I put him down at the base of the staircase, he screeched in frustration and held his legs up in the air, refusing to stand.

“What’s the matter, buddy?” I asked, confused by the sudden mood shift.

“Ahhh!” he exclaimed, putting his hands together in what was clearly an effort to sign something. But what? His signs always have a slight modification, but this one was unfamiliar. Because he was pinching his fingers together (close to the sign for “more” and also similar to his sign for Cheerios, or “Os,” as we call them), I assumed he was referring to some type of snack.

“Do you want some Os?” I asked hopefully. Charlie let out another screech and dropped his chin to his chest in frustration.

“Um, maybe some crunchies?” I offered, using our recognizable word for Gerber’s Cheetoh-esque snacks. Again, a yelp of frustration, but this time accompanied by a hand to his forehead.

My child may not speak, but by God he is expressive.

Shared grief

“I’m sorry, buddy,” I sighed dejectedly. “I have no idea what you want. What do you want?” I tried again, hoping to start fresh.

“Ahhhh! Ahhhh!” Again, the undeciphered sign. Again, confusion clouds my eyes. Again, Charlie’s crestfallen face erodes my faith that we will get through this.

“When they talk about how having a child with special needs is a journey in grief, that is particularly true for me when it comes to speech,” confides Kathryn, whose 8-year-old son has Down syndrome. “I love having a son with [Down syndrome] and I think that God blessed our family in so many ways by giving us [my son]. But there are times I still just sit and cry thinking that my son does not have functional verbal skills.... and I don't know when, or if, he will.”

5 Tips to break the silence

Children may wait to start talking for many reasons: Developmental delays, physical issues and even emotional issues. Whatever the reason, parents may go through a variety of emotions as they struggle to cope with the situation and work to improve it.

The National Down Syndrome Society (NDSS) addresses the communication development delay that many children with Down syndrome demonstrate with five tips from Libby Kumin, Ph.D., professor of Speech-Language Pathology/Audiology, Loyola College in Maryland.

“Effective ways to work on these skills at home can be learned through early intervention sessions, through books, workshops and speech and language professionals,” Kumin advises.

While her recommendations for working on a child’s speech language skills are focused on children with Down syndrome, each tip can be applied by any parent trying to help a child begin to communicate.

1

Remember: Language is more than spoken words

When you are teaching a word or a concept, focus on conveying meaning to the child through play or multisensory experiences (e.g., hearing, touch, seeing).

“An enormous conveyer of meaning is not the words themselves but body language,” points out Toni, whose child has Down syndrome. “We… find out a lot about [my son’s] needs, preferences and state of mind by listening not only with our ears — but with our eyes, hearts and minds.

“This way of thinking helped me recognize that not being able to speak is not at all the same as not having anything to say… [It also] released the pressure and impatience [we were feeling because of] the slow progress of speech.”

2

Provide many models

Most children with Down syndrome need many repetitions and experiences to learn a word. Repeat what your child says, and give him a model to help him learn words.

“Have a communication routine for everything,” recommends Victoria, who also has a child with Down syndrome. “It's not just about speaking, but simply getting your point across while you work on speech.”

Victoria describes an exercise that worked for her child. “You can print out pictures of common things he would want or need. Use a strip of cardboard with Velcro squares and attach all his favorite [things] he uses throughout the day… He can either point to what he wants or remove it and hand to you; you have to show him what to do, of course. Each time you give him one of the objects, you also show him the picture and say its name.”

Think that’s too complicated? Try these steps:

  • Search Google images
  • Drag selected images into a Word document
  • Print the images on a color printer
  • Cut out the pictures and laminate for protection
3

Use real objects and real situations

When you are teaching a concept, use daily activities and real situations as much as possible. Teach the names of foods as your toddler is eating, names of body parts while you are bathing your child, and concepts such as under, in and on while your child is playing. Communication is part of daily life.

Larina’s daughter began speaking when she turned 3 years old.

“Don't just wait, hope and pray,” Larina urges. “You are basically waiting for the speech center in his brain to ‘turn on’… This is the time to teach [your child] words. Relentlessly… when you say a word, say it three to five times instead of just once. If you think he knows the word, even if he doesn't say it, move on. There are endless words!”

4

Read to your child

Help your child learn concepts through reading about them, field trips in the neighborhood and daily experiences.

“I would love to hear what happened at school today,” Christi shares. “[I would love to be able to hear answers to:] ‘Was it fun? Did you play with your friends?’ I rely on [my daughter’s] teacher for information and sneak in early to observe and snoop!”

5

Follow your child's lead

If your child shows interest in an object, person or event, provide him or her with the word for that concept.

“There are many milestones as the child progresses toward using speech,” Kumin says. “The child responds to a familiar voice, recognizes familiar faces, experiments with many different sounds, produces strings of sounds over and over and makes a sound to mean you (Dada, Mama). Many children enjoy looking in a mirror, and increase their sound play and babbling when vocalizing in mirrors.”

For additional information, visit the American Speech-Language-Hearing Association to connect with certified audiologists and speech-language pathologists through on-line search function.

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Best apps for kids with special needs

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