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

1999 – Monica Age 7 – Vacation, New Sibling

An excerpt from our Christmas Letter 1999

This year we are a bit behind and did not get a picture taken in time to send out before Christmas, but rest assured, we mostly look the same.

This summer we had a vacation like we’ve never had before. Mary Ellen planned a Westward Ho, Colorado River vacation. Here are some pertinent numbers to snapshot the vacation. Thirteen states in 13 days in a Ford Econoline (use of the van was a gift of our friends the Singerlines!), that took us 5,304 miles roundtrip from home. Six nights in our dome tent and 6 nights in hotels. We were able to attend mass 7 days, (once in Spanish!) The highlights were hikes through Bryce Canyon and Arches National Park, a train ride to the Grand Canyon, a tour of the mighty Hoover Dam, swimming in the pools of the famous Flamingo Hilton in Las Vegas, observing the stars from the Lowell Observatory in Flagstaff, Arizona, a trip to the up thrust edge of Meteor Crater in Arizona (4,100 feet across, so big you have to see it to believe it) a family reunion in Phoenix, winding down old Route 66 through desert in southern California, and on the way home up 670 feet to the top of the St. Louis Arch. Mary Ellen had the vacation well planned out so the kids were always busy with reading, writing or games. We even had Spanish lessons twice a day with books, videos and audio tapes. Que bueno! Tim’s parents met us for the Arizona leg of the trip and we had a great time together in Arizona and Utah. Wonderful.

A sweet son was born to us on November 16th. John Bernard is five weeks old today and is a great joy to the whole family. We celebrated our 18th wedding anniversary in the dining room over dinner with our six children. So, life goes on! And God sends his blessings! Rebecca, Gabriel, Daniel, Monica, Gregory and John bring us joy. Necessity keeps us active and prayerful.

[2012 notation – This letter shows we were not always focused on Monica’s development, family life went on for all of us. Monica loved hiking the national parks and was able to navigate the trails pretty well. In Bryce Canyon we did use the child harnesses for Monica and Greg because in sections the trails were narrow and the drops steep.]

1999 -bryce21999 -John_is_born1999 -loving_john

1998 – Monica Age 6 – Daily Life

An excerpt from our Christmas Letter 1998

I was thinking about how we write about our big events of the year but it’s the little events that make up most of the year. Most days include events like trying to find something for breakfast that everyone can or will eat, remembering who needs gym clothes today, teaching Monica and Greg to play quietly so I can get some household chore done, thinking up a new way to get the older kids to practice their music lessons, serving dinner so that we have time for conversation between sports practices, listening to spelling words and flashcards, reading picture books to the little ones before bed and having the older kids put down their books to listen to an old favorite, sharing our petitions and thanks together on our knees at night, and after the kids are in bed, being able to look in each other’s eyes and rejoice in all that we have together.

We spent a few days in Washington, D.C., seeing the monuments and the national shrine. Our little guys aren’t really ready for a lot of museum time yet. We had a fantastic peanut butter-and-jelly picnic at the base of the Washington monument and spent a long time on the sidewalk in front of the White House while the kids drew it. Greg got a little tired of waiting and threw Monica’s sun hat through the bars to stir up some excitement. A nice-sized crowd gathered to watch the very well-equipped guard stroll across the whole lawn to pick up the hat and hand it to me!

1997 – Monica Age 5 – Outside Play, Sunday School, Acceptance

An excerpt from our Christmas Letter 1997

We are looking forward to some winter weather this year – Monica and Greg are old enough to really play in the snow and our backyard is now fenced, so they should be able to get out a lot more. We never thought we were fence people, but having one of the little ones heading for the street at the same time the other headed for the creek was just too much for me. They are so happy to be able to enjoy their backyard more now. I will admit that an awful lot of the garden was harvested this year before its time and none of the raspberries made it to the house!

Our fall parent teacher conferences at St. Angela Merici were very nice. Rebecca, Gabe and Danny’s teachers all reported the kids are conscientious, hard-working, polite, and have friends. That’s all we needed to hear. I was quite upbeat to head to Monica’s school two days later. She’s in the same Fairview Public Schools classroom with the same teachers as last year. The teacher, the aide and the speech therapist were glowing with enthusiasm over her progress this year. As my back straightened and my proud smile broadened, they told me that “Now she keeps her clothes on”!!!! Every once in a while we are shaken back to reality, aren’t we? After that I didn’t even ask what else I never knew about last year. Monica is getting better at following directions and is starting to be able to say some words. Her receptive language is really growing. She is a terrific helper at setting the table and loading the dishwasher.

During Lent, I was able to go away for a weekend retreat; my first in about five years. One of the things I came to realize in a new way was about accepting the will of God. You know, we really never questioned why Monica has Down syndrome, we just figured it was part of the job of life for us. We know many couples now who did not have the upbringing or support that we did and had to struggle with this. Of course, like us, they love their kids with Downs to pieces now. But what I’ve been doing is seeing this job as having the goal of minimizing the Down syndrome as much as possible and that my success would be measured by how normal I could make her. And that if I’m doing well maybe people wouldn’t even notice she’s Down syndrome. What I see now is how I need to love Monica having Down syndrome because that’s God’s will. That’s where we are here and now. How often we say we’re accepting God’s will, but we mean we’re grudgingly going along with it. That’s different from loving it. The following weekend was Monica’s Preschool Sunday School program. Monica had to process in, sing songs, sit, stand, etc. at the appropriate times, including go up and receive her certificate when her name was called. She obviously needed help for all these and it was one of the first times we were publicly facing ‘everyone’ knowing she’s different. Later that day, one of our parish priests asked us if he could wash Monica’s feet at the Holy Thursday celebration of the Last Supper. Again, we were going to be where ‘everyone’ would see her. Well, what a confirmation to sit there watching Father tenderly wash and dry her feet and realize that he, as a servant of God, really wanted to wash her feet. This wasn’t just a nice little ceremony, this was real. I could feel so clearly God’s love for Monica – exactly who she is. And I was so happy to sit there with her on my lap, even in front of ‘everyone’. In day to day life, all this probably didn’t change what I do, just what is in my heart, . . . and I do still roll my eyes when after she’s had a tantrum in the grocery, some stranger tells me it’s a blessing to have a Special Child.

1996 – Monica Age 4 – Talking, Pre-school

An excerpt from Christmas Letter 1996

We decided to make a study area in the basement for the older kids to be able to do their homework away from the distractions of the kitchen and the little ones. They really like having a place for those toys with small parts like Legos and K-nex that Moni and Greg get into.

Speaking of those little ones, they are a challenge! Remember how Monica was a baby for a long time? Well, apply that to the next phase too. I really tried to avoid the phrase Terrible Twos with the other kids, and tried to see the delights of constant curiosity and emerging independence. But, with both Monica and Gregory in this phase of development at once, that phrase sure keeps coming to mind! We are enjoying the acquisition of speech for both of them. We don’t know if it was getting the tubes in her ears, (we found out Monica had intermittent hearing loss due to fluid), starting private speech therapy, or having her constant playmate start to talk, but Monica is now saying some words! She dropped signing as soon as she was able to make a few sounds that were close enough to the words she needs to say most often; like more, juice, hot dog, cookie, no, up, out, please and thank you. She has been saying Daddy for quite awhile, then added Mommy and Bebba (Rebecca) this fall and just last week said Babe (Gabe) and Danny the first time. It is really a thrill.

Gregory’s speech is absolutely exploding. I know we were excited about the other kids too, but somehow Greg amazes us. He voluntarily says greetings and I love yous and points out objects he sees all the time.

Our summer was much more relaxed this year, if that can be possible with two toddlers. We gave up the organized sports and lessons and bought passes to the pool instead. Rebecca, Gabe and Danny really improved their swimming and snack-begging skills. Monica and Gregory were well occupied with their filling and pouring skills until the last week of summer when Gregory figured out how to open the gate to the baby pool area and I improved on my chasing skills!

We moved Monica to the Special Education Preschool in our own school district this year. The class is a good mix of children: half with identified delays (like Moni) and half typically developing. She has a lot more examples to follow than last year and it’s a shorter bus ride. We were thrilled a couple weeks ago when the mother of one of her classmates asked the teacher for our number as her little girl wanted Monica to come over to play. She’s very happy to get on that bus every day and now recognizes her own art projects when I take them from her backpack.

1996 -swim

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.

1993 – Monica’s First Year, Open Heart, Sitting Up

This is an excerpt from our Christmas letter – 1993.

Thanks for all your prayers for Monica. She is just fine now!

Tim always wanted to deliver a baby at home, but I was always worried something could be wrong with the baby, so I’ve insisted on hospital births. Instead, Monica found her own dramatic entrance into the world! Tim delivered her about halfway to the hospital in the back seat of the Caprice. We are so thankful for those 10 minutes I held her during the rest of the drive to the hospital. Because of all the medical problems babies with Down syndrome have, she would have been whisked away from us immediately had she been born in the hospital. It was a wonderful experience — but I wouldn’t actually recommend it!

Rebecca, Gabriel and Daniel are thrilled to have a little sister. Becca is especially glad to have someone to share her room with. They are terrific with her, and although Daniel is the best possible stimulation anyone could ask for, we sometimes fear for Monica’s safety under his affections!

Our pediatrician advised us to have an echocardiogram done right away for Monica, since about 4O% of Down syndrome babies have some type of heart defect. Monica had an AV Canal Defect.

When she was 6 weeks old, she went into heart failure. She was put on medication to boost her heart, but was losing weight because her heart was using all her calories trying to keep up. The cardiologist recommended supplemental nasogastric tube feedings. We were able to keep her at home and use breast milk for the tube feedings. She nursed during the day and got 12 ounces over 10 hours through the tube during the night. She was able to get to 10 1/2 pounds in time for her surgery at 3 ½ months! The surgery lasted five hours. Her surgeon used patches to create dividing walls between the sides of her heart and made a flap of tissue into 2 valves. It worked! The nurse clinician doing our patient education said it would not be unusual for a baby to be in for 2 weeks to a month [in 1992], but Monica came home on the 8th day! Her hospital stay was certainly very stressful, but we felt the grace of everyone’s prayers during that time. Tim felt there was an army of 10,000 behind us. The presence of the communion of saints was never more real.

Six months after her surgery, the cardiologist took her off all medication and said he doesn’t need to see her for a year. Our pediatrician says he can’t believe how good her heart sounds.

We are so excited about Monica’s development. She started smiling at about 6 months and sitting at 10 1/2 months. The kids are her best cheerleaders. She responds now when we play with her and is even starting to initiate play. There was such a long time when we didn’t even know if she knew who we were. That was hard for us. I have to admit I am glad when I come home now to a babysitter who says Monica cried the whole time because she missed me!

Monica is a great joy for us, but we must admit to some emotional ups and downs. Tim sympathizes with his small business clients who must make their buildings handicapped accessible, but yet we are grateful for the doors opening to Monica. We have home visits from the County Board of Mental Retardation that have been very helpful (your tax dollars at work paying for early intervention services). Ironically, these visits leave us feeling under a lot of pressure to put all their suggestions into practice. I wonder whether my mothering skills are adequate to the task. Thank goodness we can repeat often “I can do all things in Him who strengthens me.”

Christmas 1992

Christmas 1992