Zig Zag Development

We knew nothing about Down syndrome when Monica was born. We trusted that if God sent us this baby, He would also help us figure out what to do. Over the years we have received questions and comments about her development. Sometimes we would get overwhelmed realizing there was so much we didn’t know, other times we just dug in and found answers.

One thing people told us was that Monica would plateau – that kids with Down syndrome stop learning after a while. Some people even told us this would happen by the time she was around 10 and she would always be a child. We knew this simply could not be true, but we had no idea how to respond to such things. Now we have the personal experience that shows a person with Down syndrome does not plateau unless they receive no input, just like anyone else. Of course, Monica, like everyone else, is learning every day. We think perhaps the notion has been perpetuated because people stopped teaching, stopped pushing. Just a generation ago, special education programs were completely different and children with Down syndrome weren’t even taught to read. We are so grateful for the help we have received from the county and the school system and the therapists involved in Monica’s life.

Monica has however, learned some things in a different way or in a different order than the developmental checklist at the pediatrician’s office. And some things, particularly abstract ideas, are very hard for her to understand. But she’s not giving up and neither are we. In other posts, we talk about her starting piano lessons at age 18 and she continues to learn new things.

Ever since she was a very little girl Monica has been singing. But for many years her singing was more like open-mouthed humming. She had the tunes but not the words. We would often encourage or correct her to say the words, but we were not too successful. We would hear songs from Sesame Street, songs from church, even the Star-Spangled Banner – but never with words.

At Monica’s IEP meeting in first grade, we talked about reading. Since her development in all areas was slower than the other kids, we hadn’t really been expecting her to be reading yet and we felt we were plugging away towards reading. When the teachers told us they were beginning a sight word program with her, we were initially shocked. We said, “You can’t give up on her… we want her to be able to really read!” Then her special education teacher explained that they weren’t giving up either, but that just like the Signing had been a bridge to speaking, sight words would be a bridge to reading. Our other kids had done sight words too, but along with phonics and decoding, it all went so fast that once they were reading we never gave much thought to sight words. We did know that Monica certainly ‘read’ the golden arches of McDonald’s and that the red Giant Eagle logo meant grocery store to her. The Edmark Sight Word program is a very structured system which her teacher followed rigorously. Monica soaked it in and loved it. She was remarkable in her retention. We soon saw results that amazed us.

She came out of Vacation Bible School the first day bursting with joy. She held a paper with the lyrics to “This Little Light of Mine”. She had been singing that song for years, but never with words. She showed us the paper and said, “Look – it has words!” She began to sing the song with its words. She had learned all those words in her Sight Word program. She was so happy with this new discovery!

The Ear-Nose-Throat doctor was a regular visit for us. We always followed up on suspected ear infections, had ear wax cleaned out, had rounds of antibiotics, even preventatively, had ear tube surgery, and on and on. But there must have still been blocks of time in which the fluid in Monica’s hearing system just kept her from hearing well. Maybe there was also something about the combination of voices and instruments that made it hard for her to hear the words of songs. Now that she could read the words…she could sing the songs!

We soon realized this could be applied further. She always cooperated with bedtime prayers, but never actually said the words to the prayers, she just mumbled along. So we gave her printed prayers. She was so happy to read her prayers! And it wasn’t just reciting words: in the Edmark program, she learned the meaning of the words too and it shed light on so much for her! When you listen to the spoken word, you can’t control the speed it comes at you. When you read, you can control it. You can go the pace you need for understanding. This concept had never occurred to us for ourselves or for our other kids, because it came so smoothly for us. Monica’s knowledge of the words from her sight word program gave her the motivation to decode the words she did not know, because she now realized the point. Her life was enriched by this revelation.

Talking on the phone to grandparents in another state is fun for most kids, but it had always been frustrating for Monica and her grandparents. They had such a hard time understanding each other due to Monica’s difficulty in hearing well and speaking clearly. When Grandpa started writing letters to Monica, she was thrilled! She worked harder than ever in her writing so that she could answer Grandpa. Their relationship blossomed and she would carry his letters around and re-read them.

Areas of speech that are particularly hard for Monica, like putting the s on plurals or possessives, were helped by reading, because she had not really ‘heard’ those s’s consistently. Seeing them in print and learning the difference of the word’s meaning with and without the s through a structured lesson gave her what she did not absorb through hearing them in daily use.

In many areas of Monica’s development, we have been grateful for the professionals in her life who expose us to new ideas like the Edmark program. We have been surprised by Monica’s progress that didn’t follow the same path as other kids but took us on one wonderful adventure after another.

Sunday School

Sunday School

1995 – Monica Age 3 – Double Trouble, Walking, Signing

An excerpt from our Christmas Letter 1995

Monica became a big sister with Gregory’s arrival in February and she can’t get enough of him; throwing toys into his crib probably helped him learn to crawl fast.

All of the older three children have been a great help with Monica and Gregory, our double trouble team. The little partners in crime require constant supervision but are also a source of amusement and delight. They play their own follow the leader games. Monica will dump over the clean laundry and Greg will eat it. Monica opens the china cabinet doors and Greg pulls out wine glasses. They are engaging each other in “conversation”: imitating each other’s sounds and gestures.

Monica started walking in July and is doing very well at it; she is also climbing up short ladders and ramps. We are so proud of her! She now signs for Please and Thank you (with encouragement), cracker, drink, more, pretzel, cheese, cereal, bath, brush teeth, car ride and bed. She started attending a toddler program in September four afternoons a week which has been good for her development and Mary Ellen’s sanity!

1994 – Monica Age 2 – Cruising Furniture, First Signing

This is an excerpt from our Christmas Letter 1994.

We thank God for Daniel in many respects but one of our primary thanks is for the way Daniel loves Monica. He doesn’t pass by her without a kiss a hug or a caress or something rougher! He’ll offer her a book or a toy or pick her up (drag her sometimes) to involve her in something he’s doing. Almost every night his bedtime prayers include “thank you for Monica loving me… and for the whole day!”

Monica is doing great. She is still often a source of concern but more often a source of joy. Not being able to take her development for granted we have learned a new sense of awe for any child’s development. But she is developing at her own pace and we are so happy for her! She crawls up and down the stairs, cruises furniture, can open the piano lid, climb up the bench and bang the keys, escapes her high chair and steams to the middle of the kitchen table (amid shouts of “No No Monica” and frantic waving) and she is beginning to “sign” to us after months of one way conversations! We’ll be using sign language because her speech will likely be so delayed. The county early intervention specialists recommend this to cut down on her frustration; the signing will be dropped as she becomes able to say each word.