Q. My 4-year-old son who has Down syndrome has begun to use many new words within the last year. Some are spoken and some are signs. I have been trying to get him to say two words together. He can say ball and he can say big. He can point to the big ball if I give him two balls to choose from, but he won't say ball. Sometimes, he will repeat the words big ball when I say them, but not always. How can I help him to combine words?
A. Your son sounds as if he is progressing well in his speech. According to our research, he is just about on schedule. In a recent study of 168 children with Down syndrome (Kumin, Council, Goodman, 1998), we found that more than one quarter (28.6%) of the children were not yet combining 2 words, but by age 5, all of the children with Down syndrome in the study were combining words at least sometimes. Our data showed that 26.1% of 5-year-olds were sometimes combining words and 73.9% were often combining words. These percentages stayed about the same through age 7 years. By age 7, 92.3% of the children were often combining words and 7.7% were sometimes combining words. By age 8, 100% of the children were often combining words. Since we were studying expressive vocabulary development, if the child was using 2 signs in combination, we counted this as combining words. We did not divide up signing and speaking, but our impression is that the ages for combining words in speech would be older than the ages that we found in our study of expressive vocabulary.
Try teaching your son to combine 2 signs that he knows, while at the same time providing the verbal stimulus (speech) for him. An effective technique for helping children progress from one word to 2-word combinations is the use of the pacing board. The pacing board is a visual-motor cuing system which uses dots, picture cues, or word cues on a large oaktag board to help children learn the concept of multiword combinations. The pacing board provides a visual representation of the units of language. The pacing board is usually used at the point at which the child is beginning to transition from single word to multiword utterances, just at the point where your son is now.
The pacing board used earliest generally consists of two large dots, arranged horizontally on a rectangular board (poster board, illustration board or foam core board. If your son likes power rangers or dinosaurs or cars, you could use 2 pictures, but you want to be sure that he doesnt get too interested in the pictures themselves. The pictures are just meant to serve as place markers.
When your son produces a single word utterance, for example, ball, you model a two-word utterance, for example, big ball and point to the dots in sequence left to right. Use hand-over-hand assistance to move the childs hands across the dots, i.e. hold your hand on your sons hand and help him touch the dots in sequence. Your son may imitate the words big ball or may imitate only one word in the beginning, but be sure that he points to the 2 dots. He may also use 2 signs to get his message across. Using the pacing board will help him understand the concept of using 2 words together.
For a complete description of the data on multiword expressive vocabulary, consult:
Kumin, L., Councill, C. & Goodman, M. (1998) Expressive vocabulary development in children with Down syndrome-Down Syndrome Quarterly, 3, 1-7
For a description of how to make and use pacing boards, you can check my book or the following article:
Kumin, L. (1994). Communication skills in children with Down syndrome.
Bethesda, MD., Woodbine House.
Kumin, L., Councill, C. & Goodman, M. (1995) The pacing board: A technique to assist the transition from single word to multiword utterances. Infant- Toddler Intervention, 5, 23 - 29
Q. The county diagnostic center says that they will do a speech and language evaluation for my daughter who is 2 years old, but that they do not start therapy for children with Down syndrome until they are 3 years old. I thought that it is very important to start therapy early, and I feel that I'm missing out on something she needs. I'm at a loss. What can I do if they won't provide services until she is 3?
A. The laws (PL 94-142, PL 99-457 and PL 105-17 IDEA 97) are very clear on the need to develop an individualized educational plan that is formulated and agreed to by a committee of educators, therapists and parents. It is illegal to say they do not start therapy for children with Down syndrome until they are 3 years old. It is also illegal to say, Children with Down syndrome receive group therapy or Children with Down syndrome receive 30 minutes of individual therapy each week. The educational plan must be individually designed by you and a team of professionals to meet your child's individual needs. Any statement that provides or denies specific speech and language services based on your child's diagnostic label, Down syndrome, is contrary to federal legislation. Your child's speech and language program must be designed to meet your child's needs. IDEA 97 includes parents on the team that is planning the child's program. IDEA 97 mandates the opportunity for parents to examine all records and to participate in meetings with respect to identification, evaluation, and placement. (section 615).
According to the definitions of developmental delays and at risk conditions, children with Down syndrome should be able to qualify for services if they meet certain criteria: an individual under 3 years of age who needs early intervention services because the individual -
* is experiencing developmental delays, as measured by appropriate diagnostic instruments and procedures in one or more areas of cognitive development, physical development, communication development, social or emotional development, and adaptive development; or
* has a diagnosed physical or mental condition which has a high probability of resulting in developmental delay (section 632 (5))
Early intervention services are defined, under IDEA 97, as including special instruction, speech-language pathology and audiology services, occupational therapy, assistive technology devices and assistive technology services, early identification, screening and assessment services, health services necessary to enable the infant or toddler to benefit from the other early intervention services. (section 632 (E))
You report that the local school system generally does not provide services to children with Down syndrome under 3 years of age. Make the point that you want your child evaluated to determine your child's needs for services. A comprehensive early speech and language intervention program should include evaluation in each of the following areas, and treatment as needed in each area:
1. Sensory perception and sensory integration
2. Oral movement skills
* voluntary movement
3. Pragmatics skills
4. Pre-Language skills
5. Communication systems that transition to speech
* total communication
* communication boards
* computer communication systems
6. Speech and language skills
Q. I am trying to teach my child the difference between I, you, he and she, but this is very difficult for him to understand. What are some ways to help the child know that these pronouns change in a conversation?
A. You are correct that these concepts are very difficult to teach, and are confusing for children to learn. They are relative to the situation, and are best taught in a context. If your child is able to read, portable cue cards can be used which would help in teaching the concepts. Using a group of people to teach the concept and then a group of stuffed toys or toy figures to practice the concept is helpful. Here are some ways to help your child understand the changing role of these pronouns:
1. In early play, always mark the turns. For example, when you are rolling a ball back and forth with your child, say Kevin's turn and Mommy's turn. Then introduce the concept of my turn and your turn. This can be done with the rolling ball, and it lends itself well to musical toys such as bells or xylophones. Once your child appears to understand my turn and your turn, introduce a third person, e.g. his older sister or grandma. Then mark the turns as my turn, your turn, her turn. Once this is mastered, add another person, a boy, and introduce his turn.
2. To teach their you need two helpers. Practice his and her, then have the two do something together, and introduce the concept of their. Its his ball, its her ball, its their ball or its his turn to jump, its her turn to jump, its their turn to jump.
3. If your child is able to read cue cards, it will be helpful. Make up index cards that say my, your, his, her, their. When I jump, I can hold the card for my turn. When you jump, you get the card for my turn and I get the card for your turn. Each time, we change cards, each person must read and practice his card. that introduces the idea of relative change as the situation changes.
4. Some items don't change in the same way, e.g. my room, your room. The use of the pronoun changes, but the ownership is not transferable in the same way that jump and turn are interchangeable. Here, you need to teach the concept that if I point to you or am talking directly to you, I can use your room; otherwise I would need to use his or her room if I am talking about you, rather than to you. If you are present, I can use your but if you are absent, I must use his or her. Once your child understands the concept with people, practice the structures using a room full of stuffed toys or action figures. Repetition is important to reinforce correct use of the structures.
Q. I think our son has apraxia. When he responds to our requests to say certain words, he sometimes gets a burst of non-related sounds. For example: Tell the puppet eat banana, and he says, eat dananananadananana or maybe something less close to banana. I have tried the pacing board, but that takes lots of tries. Any ideas!?
A. Since I do not know your son, I do not have a complete picture of his speech. Having difficulty turning off a sequence of sounds, reversing sounds, and having difficulty with imitating sounds and words are some symptoms of motor planning problems known as developmental apraxia of speech. You would need to see a speech language pathologist for an oral motor evaluation to determine if this is the problem for your son.
While the pacing board can help in providing cues for including syllables that are omitted, it is less helpful in helping the child cut down on the number of syllables when he is using extra syllables. So, if the pacing board had 3 dots for banana, your son might point to the 3 dots for his first 3 syllables, but then still be saying more syllables even though he ran out of dots. The pacing board can help develop the awareness that there are 3 syllables in the word banana, but does not help in stopping the flow of syllables.
But, if what your son is demonstrating is developmental apraxia of speech, there are very specific methods that can be used in treatment. The goal of the treatment is to help the child learn to sequence sounds and to be able to produce a longer string of sounds. Therapy progresses from shorter to longer sound sequences in a very organized treatment plan. Easy Does It for Apraxia-Preschool and Easy Does It for Apraxia from LinguiSystems and Becoming Verbal and Intelligible by Therapy Skill Builders are resources that are designed specifically to treat children who are experiencing developmental apraxia of speech. Talk with the speech language pathologist in your sons school or seek a professional in private practice, or a university or hospital setting. This is a complex speech and language problem that requires professional guidance.
Q. My daughter has a large tongue, and she has difficulty keeping her tongue in her mouth. When she speaks, it is always jutting out, and she is hard to understand. I am considering tongue reduction surgery. Will this help her speech?
A. In most people with Down syndrome, the tongue is average in size, but the mouth is smaller, so the tongue appears large. This is known as relative macroglossia, and tongue protrusion is common. True macroglossia (large tongue) is less common. Difficulty with speech may have many contributing factors, in addition to the relative size of the tongue. Low muscle tone in the tongue and motor planning problems may have an impact on easy your daughters speech is to understands. Both of these problems can be worked on in speech therapy sessions. There may also be low muscle tone in the lips and face, but not in the tongue, resulting in muscle imbalance and contributing to difficulty in keeping the tongue in the mouth.
Tongue reduction surgery is a medical procedure. It changes the structure, but not the function of the tongue, and research has not shown improvement in speech. It should not be done expecting speech improvement. At the 1996 annual conference of the National Down Syndrome Congress, Dr. Pilcher discussed various types of facial plastic surgery including tongue reduction (partial glossectomy). She reported that some improvement in tongue protrusion has been found post surgery, in some cases, because the tongue is smaller, but studies have not demonstrated improvement in speech. Dr. Pilcher cautioned that tongue reduction is serious surgery and that it can leave scar tissue. This may result in the tongue being less movable and an unusual shape, and this may negatively affect speech.
Dr. Libby Kumin, Ph.D., CCC-SLP, is the editor of the bimonthly newsletter Communicating Together. For subscription info please call toll free: 888-816-8501
This article first appeared in issue #7 of Down Syndrome Amongst Us