Early Intervention

"What a quiet, sweet child! How well behaved she is! She's not demanding, is she? She doesn't hang on to you. What a long attention span she has."

Compliments or danger signals? Parents who express concerns are often told "Children develop at their own rate," "Oh, he'll talk when he's ready," and the ultimate put-down, "Don't worry so much."

As a parent, you know your child better than anyone else does. If your child doesn't (or didn't) babble as other babies do, if your child doesn't respond to people outside the family circle, if your 18-month-old stacks seven Duplos for twenty minutes (or engages in any other repetitive behavior), or if he has not advanced to double syllables (as in ba-ba, ma-ma, etc.)- by age two, those remarks should only reinforce your concerns.

While parents of premature and low birth weight babies are cautioned to be on the lookout for delayed development, we don't always recognize the symptoms. Even full-term and robust babies can be slow to develop for no discernible reason. It's easy enough to spot problems with head-banging, rocking, screaming touch-me-not behavior, but the passive "good" child sometimes falls between the cracks and is not diagnosed until three or four or even five years of age. The current label for these developmental delays is PDD or sometimes PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified).

But no matter what the problem, the sooner you get your child tested, the sooner he will qualify for the services he needs, and the sooner he will benefit. If you worry, or wonder if you have cause to worry, don't hesitate to ask your pediatrician, call the nearest Children's Hospital, or check the Internet for the whereabouts of early intervention programs. "Early" means before three years of age. They will set up an appointment, listen to your concerns, answer your questions and arrange free testing and screening. The early intervention programs only last until the child's third birthday. At that time, the school system takes over. Special pre-school classes are available for three- and four-year-olds, where your child is tested each year, an individual education plan is created, and his progress is documented.

The best window of opportunity is between age two and three. Before that, especially with borderline cases or passive children, it's sometimes hard to tell if there is a problem. If YOU feel there is reason for concern, run, do not walk, to your nearest early intervention program. It won't cost you a thing and may make all the difference in the world to your child. It did to Gwen.

Let me tell you about my beautiful, quiet, well-behaved (so long as you left her alone) grandchild, Gwen, who didn't respond to her name, didn't make eye contact with anyone other than primary caretakers, and had only single syllable utterances at age two.

She had problems getting enough nourishment in the womb and was born early. She weighed 2 pounds, 6 ounces. She spent 53 days in intensive care and came home weighing 3 pounds, 14 ounces. Gwen's mother had serious health problems and her father was taking care of her mother, so I was Gwen's primary caregiver. It complicated matters that I was not a legal guardian and each time I found a new way to help Gwen, I had to get her parents in to sign papers.

After a slow physical start, by the time she was in her second year, it seemed as if she would be all right. She walked, she smiled, and she said a few words: "tar" for star; "Eee-ow" for the cat's sound; "dis" for 'read this book!'; "bye" and sometimes "bye-bye"; "no" for nose; "mmmm" for more and also for moon; "app" for apple. But before she was two, she lost these words. (Regression at this age is a real danger signal.) She had never put two words together. That she didn't respond with glee when her father came to pick her up worried me most of all. She was passive, ignoring anyone else in the room. She focused on her book, or video, or duplos to the exclusion of all else-she just tuned in and dropped out. When she couldn't shut out the world, as in a crowded or noisy place, she would panic and scream inconsolably. I began to bring up her lack of speech at her regular doctor visits at 18 months, but she was 24 months old before we got a referral to Children's Hospital Speech and Hearing Clinic, and it took over two months to get an appointment. Her hearing was OK, but her speech development was not. She was enrolled immediately in twice-a- week speech therapy.

Pediatricians are only concerned with physical development, and must feel constrained by insurance company rules. This is the only reason I can figure for waiting to refer the child until she was two. I knew something was wrong, but had no idea where to go for help. When Gwen went for her second hearing test the department head did the test, and observed her lack of response, as well as her unruly behavior during the test. (She wanted to be left alone, not forced to sit still and listen.) He suggested she might have a problem and we might like to visit the early intervention program upstairs. Yes! So it was by pure dumb luck that I found the Children's Hospital newly developed early intervention program.

Only that morning our private speech pathologist had mentioned autism as a possible problem. Two professionals in one day suggesting the child needed more help than speech therapy confirmed my fears. The teachers at the early intervention program tested Gwen and found her to have moderate delays in speech, cognitive abilities, motor ability, and social skills, which qualified her to participate in this free program.

Once a week we went to "school" and with three or four other children. In the early intervention program, Gwen learned how to play, and I learned how to teach her. Our teacher provided structured play designed to teach the children how to play, how to sit in a circle at story time, and how to interact (appropriate finger motions while we sang "Itsy Bitsy Spider" for instance). Sensory integration exercises included finger painting, making instant pudding (and eating it), playing with ice cubes or whipped topping and using cookie cutters to cut thick gelatin. All this was done at a table in the kitchen! The teacher provided season-appropriate crafts that each parent helped their child with. Refreshment time encouraged the children to communicate by choosing between two foods offered, and by asking for "more".

So, by the time Gwen was two and a quarter she was going to speech therapy twice a week and Early Intervention once a week. We had a "user friendly" speech pathologist and I sat in to learn the techniques used to elicit speech. On Fridays I "borrowed" a friend's twins who are eight months younger than Gwen. I put them in youth chairs around the dining room table where we sang songs, identified ourselves in a hand mirror, molded Play-doh or dug into indoor sandboxes (large flat containers filled with rice or beans). Refreshments, free play in Gwen's room, and watching "Little Bear" on Nickelodeon completed our play group time. It's important for your slowly developing child to be around normal children. Children watch other children, and learn from them, not only speech, but social behavior as well.

I worried that I wasn't doing enough; I wanted her to be fixed right now. But that's not the way it works. It's a slow and laborious process, especially at first. I was told that I was doing all that could be done … a two-year-old can "go to school" only so much. Of course, I followed up on the things I learned in speech and school. At bath time, I asked for, and got, the word "more" or "buh-buh" when she wanted me to blow another bubble. I became slow to wait on her, and didn't notice when her cup was empty. Her request for more juice was always promptly rewarded.

Gwen always liked animals, so we used picture books, toys, stuffed animals, and videos like Bambi and Aristocats to take advantage of that interest. I never shall forget the thrill of her first spontaneous multi-syllable word. "Eh bah dee", she said, "Eh bah dee…" Her grandfather caught on first. "They're singing "Everybody wants to be a cat", that's what she's trying to say!" And it was. I took up the phrase and she ended it with "ah cat". Later on, as she began to relate what she was seeing to her own experiences, she was riveted by the scene in Bambi in which Thumper teaches Bambi to talk.

Gwen learned to talk by echoing what she heard, then learning to use the language in appropriate situations-"I'm fine, thank you", for instance, or "Let's go play". She began telling us she was hungry by saying what we said: "Are you hungry?" Then she switched to "Am I hungry?" Now she tells us: "I want a peanut butter and jelly sandwich!" She answers questions, and uses pronouns correctly - most of the time. She would like to converse with her peers, but has trouble putting her ideas into words. Spontaneous conversation is very difficult. Her contributions to the conversation most often are phrases she has learned verbatim from videos or storybooks. She gives one-word answers to grownups, leading those who don't know her to conclude that she is just shy.

When she was two, she had frankly autistic traits that were obvious to the speech pathologist, the hearing evaluator, the Early Intervention staff and certain members of her family. Now her autistic traits are hardly discernible. She is happy, outgoing, and confident, comes when called, engages in creative play, and can verbalize her needs.

Early intervention made a very real difference in Gwen's development. She still has a long way to go, but she would not have been nearly so far along now if we had waited until she was three or four to get help. My advice to you is:

1. Listen and learn from your speech therapist and apply those techniques until they become second nature
2. Participate fully in your child's early intervention program and repeat those activities at home
3. Regularly invite one or two other children over for playgroup - be sure to plan activities!

Today Gwen is four-and-a-half years old and in her second year of the preschool program for speech-delayed and handicapped children at Burkett School in Jefferson County. Next fall she will be in a Special Ed kindergarten. After evaluation by her kindergarten teacher, she will be mainstreamed part of each day.

May, 2001 Update

When Gwen was 4 ¼ years old, in October of her 4 year old Preschool, she suddenly began to understand, to 'catch on' to things, and to see and appreciate the world around her. Her big breakthrough came at Halloween. She had always liked Princess stories like Snow White and Cinderella, and when I bought her a Cinderella costume, she was on top of the world! She preened in front of the mirror and wanted to wear her costume all the time. It was her first Halloween. Thanksgiving, Christmas, New Year's, Easter, they were all new to her during her fifth year. We had certainly tried to interest her in the decorations, costumes, gifts and stories of each season, but the penny didn't drop until she was four. Halloween is still her favorite holiday.

Kindergarten was a banner year for Gwen. In the Special Ed classroom and in the regular classroom for academics (with one other child and an aide) she continued to progress. She began to read spontaneously, and started working on her graphs while other children were still having it explained to them. She grasped concepts presented, and having an aide at her table helped keep her focused and on task.

First Grade has been more difficult. She has not been able to stay on task with so many distractions in the room. She has speech twice a week where they work on verbal social skills… saying the appropriate things in different social situations. Syntax is not so much of a problem as she learned to speak by memorizing whole stories and movie dialogs. By the time she began using language herself, the syntax was pretty much set. She goes to a Special Ed teacher for Math, but we feel she needs more one on one, especially when she is doing workbook sheets and other writing projects at her desk. Gwen has an active fantasy life. She isolates herself from her classmates by reading a book or by acting out her favorite stories.

(If you suspect that your child has a developmental delay, NICHCY can refer you to early intervention resources for each state in the U.S. Or contact your local autism support group, in the U.S. or around the world.)

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