Working with Down Syndrome: Q&A

Often we are asked questions about how we provide treatment for children with Down syndrome.  The following is a series of questions and answers to help families, professionals, and educators regarding our approach to working with these children.

Question: How can you tell when a child’s oral motor strength is less than other kids?

Approximately 40 percent of children with DS have an oral-motor problem that falls in the moderate to severe range. All have some motor problem, due to hypotonicity, or relaxed muscle control. For those with a more severe problem, it can affect their eating, chewing, swallowing, and eventually can affect the child’s speech production. In speech, we see a lot of difficulties in lip rounding and closure, and in tongue tip movement. You will hear more back sounds, than anterior sounds. Now, with Douglas, he has a good deal of difficulty in lip control and tongue mobility. In addition, he produces a lot of lateral sounds, especially in fricatives. This is due to his poor tongue-tip plus teeth coordination. You can watch him when he produces sounds and see these movements.
Many children with DS look like a child with oral-apraxia. In addition, many children with DS look a lot like a child with oral-apraxia. That is, the child might have great difficulty imitating what I ask of him. If so, I try to get him to watch me produce something, but because of his history of not being able to match an adult’s production, he will refuse to attend. That is part of why I use the mirror (i.e., second question). The mirror, when laid flat on the table, allows the child to see right down into his/her mouth and watch the tongue move. If I would hold the mirror up, the child would typically look at his eyes and smile. I want him to his mouth. Then, when I sit next to him and look at the mirror in parallel, he will attend better to my production and then to his. It also allows me to do what is called “shadowing”, or talking directly into the child’s right ear which goes directly to the child’s left hemisphere (due to right ear advantage). I am “hoping” that it will tap into the child’s close-circuit neuro-system, and help to stimulate proper speech production    (A method adopted from Van Riper.)

Question: How do we help him with his speech?

Basically, my approach is that direct work and drill does not get you very far with these types of children. The idea is to tap into his multi-channel learning system, the auditory+visual+kinesthetic+tactile system. He will need to see, hear, feel, and move with the productions. He needs to go with the “flow.” One of the best ways I have found to approach this is through Literacy. Here the child learns to make sounds for letters, is asked to write them, is asked to blend sounds together or to attack words, and to see them. The beauty of this system is that the child doesn’t really know he is being asked to do all of this stuff. An added dimension to this approach is that we are also working on vocabulary and syntax at the same time. The words we read may be new concepts or old. The stories we read provide much ore experiences than a traditional, and unfortunately, boring language approach. The sentences in the stories can become models for the child to say and learn. I also begin to ask lots of questions about the stories, called scaffolding, which increases the child’s listening and language knowledge.
It is important to realize that a little goes a long way with these children. A little of intensive drill, for short spurts, say 2-3 minutes, is much more beneficial than is 15 to 20 minutes of practice. Although a 2-3 minute spurt seems like little time, it does appear to embed the motor activity within their system. I certainly don’t just do one 2-3 minute spurt, but will move off onto a language or related literacy activity with the intent of returning to this oral-motor 2-3 minute spurt again later on. If a session goes well, I include these spurts three to four times per session.
I also do not concentrate entirely on the sound(s) that the child has in error. Success and having fun is as important as drill on the error(s). A child needs to feel s/he is succeeding in the interactive-learning situation before the can “go with the flow” of the motor-planning involved with a more difficult task. I use the concept that a child needs to be at least successful in what s/he is being asked to do at least at a 80 percent level. That means if the child is struggling, don’t push him/her or frustrate his/her efforts. Help him/her by modeling the correct production and move on. Children easily understand what is being asked, the problem all too often is that the adult thinks the child doesn’t understand, and then the adult pushes the child beyond his/her limits or ability. The child then shuts-down and gives-up. It is important that the personal interactive-channel between the adult and the child continue to flow so that the child will attempt new and different productions.

Question: Will a child’s poor speech intelligibility slow him down?

Oh yes! Poor speech intelligibility will become a frustration to a child, and he will begin to be less of a risk taker. He will more and more stay within his comfort zone and not attempt things. WE MUST NOT LET THIS HAPPEN. Also, and more importantly, his teachers and therapists are going to believe that he “can’ do it” because they cannot understand him, or he will not try for them. They will begin to lower the bar of expectation more and more, expecting less and less of him. And, he will begin to do less and less WE CAN NOT LET THIS HAPPEN.
The number one concern of most parents regarding their child’s development is whether s/he will be understood. They often have to deal with heart defects, visual problems, hearing difficulties, etc. But, these are things they feel can be “fixed.” The problem of not being understood is much more evasive and insidious because the parent does not think it can be easily “fixed.” Not only that, it speaks to the importance of communication as a social value. The individual who cannot communicate, or who can not be understood, is often considered less social, less adept, and less independent. We, as a society, can function without reading, without math, without machines, but we cannot function with out communication. Speaking together is the essence of society. Through out communication we establish rules, define problems, resolve issues, reduce chaos, refine needs, and express ourselves as human beings who are unique and different from all of the other animals on the planet.
Being able to speak and to communicate is the most humanistic characteristics that we have.

Question: I remember that many kids with DS have autism. Is it really obvious when they do, or is it more of a tendency?

Autism is a spectrum disorder. That means you have to understand what constitutes autism in order to determine whether a child with DS has autism too.

• Qualitative impairments in social interaction, as manifested by at least two features.
• Qualitative impairments in communication as manifested by at least one feature.
• Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one feature.
• Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
1. social interaction
2. language used in social communication, or
3. symbolic or imaginative play

To be autistic a child must have a total of 6 points from these areas. Considering a typical child with DS, they will have at least one point in qualitative impairments in social interaction (that is, if he has an attention problem and “tunes” out his environment, he would qualify here.) All children with DS would receive one point in the second category in that they have qualitative impairments in communication. For the third area, restricted repetitive stereotype patterns, it is again possible for nearly all children with DS to score one point (especially in the area of difficulty making transitions. That is, children with DS are quite rigid and do not like to move from one activity to the next, or one level to the next, or to repeat an activity that was just finished.) In the fourth category, it is easy for a child with DS to receive two points: one for language used in social communication and one for symbolic/imaginative play. Frequently, children with DS lack these two areas due to their nature.
Therefore, if we add correctly, many “typical’ children with DS would have a score of five points, or only needing one more point to qualify as autistic. It is quite easy for a child with DS to have an additional point. In fact, the literature says that nearly 40 percent of children with DS have autism.
Do I think that most children with DS have autism? The answer is clearly no. In my estimation, the score for children with DS to be autistic should be higher than six, perhaps a score of eight. Are we seeing any children currently with DS who I believe are autistic? Yes some, more often no.