Oh Baby…How The Effects of Down Syndrome Turned Our Lives Around
Dragged Kicking & Screaming Into My BIggest Blessing
I'd like to share with you, an event that rocked my world, and maybe shed a bit of insight on what it's like to fall in love with a child with special needs.
When my second child was born, I was thrown into my darkest hour. Now, whenever I think of her—which is every morning, noon and night—I just smile and smile and smile!
I didn’t even know what Down's Syndrome was back then. I thought it had something to do with the special-needs character called Benny on L.A. Law, a TV show that was airing at the time. Every morning when I woke, I didn't have a moment's peace; a deep depression descended.
I had asked to see a social worker to see if anyone wanted to adopt! I certainly didn't want my lovely little family turned upside down because of this unfortunate occurrence. Now, when I look back, I see that I was the one upside down.
Little did I know, the hand that I was being given was to be a wonderful saving grace throughout my life. Other parents of kids with Down's Syndrome kids will know exactly what I mean. I was going to mention that my oldest and youngest are six years apart. My second was born before my first was out of diapers; and then, she potty trained with my last. That meant I had kids in diapers for six straight years! And, there were many little household situations that had to be dealt with. However, for those of you who aren’t parents of a Down Syndrome child, let me set the correct backdrop for this article by listing just a few of the blessings that arrived with my special child.
- Siblings become more caring compassionate human beings
- The entire household is automatically trained in the art of compromise
- Our special girl is the unrevocable tie that binds the whole family
- Receive unconditional childlike love that lasts a lifetime
- Friendships with exceptional people because of our common interest
- My own ability to see beauty and reality, that has nothing to do with physical attributes
She needs you even more.
She Needs You Even More. That was the headline on the pamphlet I was handed when my daughter was born. And, how apropos, that when I got home from the hospital and my new life began, so did the show Life Goes On, starring an actor with Down Syndrome, Christopher Burke. My education came swiftly, and with an unexplainable zest, I was on it…triple-time! Reading books, driving to therapy, traveling across the country as Green Lake County’s representative for special needs children birth to three, and editor of their newsletter, GOLD, standing for Given Our Little Differences.
However, as I zipped along on my rehabilitation program, my darling took her own sweet time. I remember another useful metaphor regarding giving birth to a baby with Down Syndrome… Imagine having planned an exciting trip to New York. You have prepared and packed and are jetting through the sky; only to arrive in the mellow, sloping hills of slow-paced Switzerland. Everything’s changed. I don’t know of a better way to learn and embrace patience as you participate in the life of a child with Down's Syndrome, albeit, a delicate, and slow-paced life.
By the way, here’s something interesting and useful for anyone communicating with an individual with Down's Syndrome: a person with Down's Syndrome comprehends information at a higher level than they can express it. It has to do with the brain's speech processing area, and seems similar to a person who has had a stroke, and has difficulty with speech. Case in point, although my daughter was typically late with language—walked at four, talked at six, rode bike at 12—she communicated with sign language from the age of six months.
110% Pure Heart
You want to get on my kid’s bad side; talk to her like a baby. She has a sixth sense when it comes to anyone patronizing her, and when you see her roll her eyes, just know, yea…that was for you. By the way, a lower IQ does not reflect social skills, compassion, or sense of humor prowess; she has these in abundance. And, come on, we all have an adult friend or two who seems to be getting through life well enough only using 2% of their brain power. Does it really matter?
As a toddler my daughter was fearless and preferred hanging with the boys. On the beach, ad hoc playmates quickly joined her sand digging; in first grade, she happily showed the other kids how to open their milk carton, since she was an old-timer, having been going to school since she was three.
At dusk, one 4th of July, the family was at the park and there was a healthy turnout of people milling around. Our daughter went missing for a bit; hearts in mouths as usual, we quickly surveyed the immediate area, only to find her with another little girl, also with Down's Syndrome, their arms locked around each other. It seems the other little girl was lost and saw our daughter. She recognized her from school, and went immediately up to her, and they just hugged. She wouldn't let go of our daughter. I don't think any words actually exchanged between them. Our daughter took her in her arms and just hugged her right back, sensing the girl was frightened, keeping her safe. She held on to her until we found them both. We then found the girl's parents, and witnessed what would become many, many examples of the huge heart of compassion our little one was gifted with.
Throughout her childhood, I enrolled my daughter in regular dance class, art class, karate, theater and summer camp with the understanding that if there was any problem we would withdraw. My daughter was the first special needs child allowed to attend the regular kindergarten because it was closer to our home than the Special Needs class. We were never asked to withdraw, and I can’t tell you how many times the teachers expressed to me that having her was an asset to the whole class. The theater director at the Fort Lauderdale Children’s Theater said his group embraced her.They even created a moment in one scene where they all stopped and had her do the splits, center stage. (One advantage of having hypo-tonic muscle tone.)
At home, her antics cracked me up. Remember the car commercial where a customer licks the keyhole of a car so another approaching customer won’t take it. Well, my kids must have seen it. My special daughter has a little sister whom she liked to lock out of their bedroom every chance she could. One day I’m with my girls in their bedroom, when, apparently, the little one has to go to the bathroom. I see her look toward the door, but she hesitates because she knows if she leaves, she might get locked out. She looks around, then quickly goes to the door and licks the entire doorknob. She leaves. What does my special child do? Without missing a beat, she grabs a roll of masking tape, and without touching the doorknob, shuts the door. Then tapes the entire door to the doorframe!
Stages: The big bedroom dump
Her girlhood, pre-teen and teen stages were marked by bedroom excavations. I noticed the first, early one evening, as I walked upstairs and found my daughter’s room suspiciously bare, and the hallway packed with the debris of childhood. The first time it was toys, stuffed animals, dolls; she was done with being a little girl. The next time it was chapter books, junk jewelry, and lots of pre-teen clothes; one time she simply told me she didn’t like anything blue. I’m not sure what that what the blue period was about; except her sister got all her blue clothes.
I don’t know if transitioning to young adulthood was more difficult for my special daughter or for us. She learned how to participate in a conversation at her social skills class, and a variety of vocational skills, but she was also becoming aware that she would never be Britney Spears cool, or even regularly 'included'. As she aged, the gap widened, and to simply throw her in with typical groups would just about guarantee a degree of exclusion. Her father and I took it hard. No matter how many summer camps we sent her to, or movie dates we arranged, this little darling would never get to experience the camaraderie of typical kids and teens. There would be no one calling and giggling on the phone and inviting her to hang out. The most frustrating and heart-breaking obstacle her father and I would ever be confronted with, was how to diminish the isolation of mainstream exclusion. It was a double edged sword, most of the world was uncomfortable with our baby; and our baby was uncomfortable with most of the world.
One summer, when she was about 13, my lovely daughter was sprawled across my bed. She was sad and melancholy. I asked her what was wrong. She gave me the usual shrug.
“I'm sad,” she said.
“Do you know why?” She shrugged.
“What were you thinking about, honey?”
This was the moment I had been dreading. My high-functioning girl had become aware that she was different. And it wasn’t different in a good way. Oh, we had had all the right conversations, about how some people had blue eyes, some brown. Some kids were good at some stuff, but other stuff, not so good. I don’t think she really understood what Down Syndrome was. But, that day, she definitely ‘got it.’
What happened next; well like the TV show says, life goes on, and it did. That summer was overcast with a soft sadness; and my heart felt like it was breaking. But my daughter is un-dauntable. She doesn't tell me everything, so I can only wonder at her resileincy from a distance.
Secret Powers & Special Skills
You’ve heard of nipping a problem in the bud. When it comes to derailing conflict, my daughter doesn't only nip it in the bud, she catches the seed. One day, we’re driving along, I don’t remember what the conversation was, but I was two words into my sentence, when a little voice peeps up from the back seat, “mooom.” Huh?!?! Her little warning had to do with the fact that she noticed a change in the tone of my voice that indicated an upcoming argument…Yea, she was right. She noticed I was irritated about something, before I even noticed.
I share the next one with you with the warning, believe it or not. I’m an old-fashioned girl with little interest in the occult or spirit world; however, I have been told that my house is a portal for spirits. WHATever, right?!?! So one day I come up behind my daughter, and she’s standing like a traffic cop facing the hallway that runs through the house front to back, and she has one hand up, pointing to her right, and the right is waving, like a traffic cop waving traffic through. The expression on her face is kind of resigned and comical, like ‘This again…it’s thatta way.” I have to tell you, just like any mom in my position will tell you, our kids keep their imaginary friends forever. So naturally, that’s what I thought all of my daughter’s chattering to the air was. Until one day, I saw her answering an invisible inquirer, rather irritably, about three times, that her name was Maggie. Since then, I have googled, kids who see ghosts.
Everyone Has Hopes & Dreams
And did I mention she has a killer sense of humor. One night, in the kitchen, beneath a single glowing light, I was trying to trim her bangs. She’s ducking her chin down, always a little uncomfortable at being ‘handled.’ So I’m bending over trying to get at those bangs; and she instinctively ducks down more; and I’m practically upside down trying to get at those bangs; meanwhile she sees the humor in this, and is ducking down even farther, and smiling. I’m laughing, saying, “put your chin up,” now she’s giggling…this went on and on until we were laughing so hard are eyes were streaming. Then she says…’mom, I peed!” Sure enough, she steps away and there’s a little puddle. This is the only person I know that actually peed from laughing too hard.
My sweetheart’s humor has gotten her into a bit of school trouble from time to time. In one class, social skills were being taught, and manners were taken very seriously. This particular morning, as she walked into the room, and burped out loud. The teacher asked her to say excuse me. Now, I don’t know why, but, she never wants to say ‘excuse me’ when she burps at home. So, she ignored the teacher…who asked her again. The whole class was watching and my little glutton for attention didn’t mind that at all; but the teacher was dead serious. Say excuse me. She refused. It was a stand off. You need to say excuse me. She refused. It was getting to the point where it looked like big trouble. Finally, the Teacher’s Aid went up to her, and trying to help, sweetly coaxed,“It’s just two words. Say excuse me. Just say two words.” Hands on her hips, she rolls her eyes and says “WHAT EVER.” She was promptly escorted to the principals’s office. (The aid told me later, she had to look away to keep from laughing.)
What would you do?
You see a person who appears to have Down Syndrome and they seem to be lost.
What the future holds.
We are at a crossroad. Independent living in a supervised group home is often a goal for special populations, for two main reasons,1), To enhance the quality of life and be as independent as possible, and, 2), to prepare for the possibility that the child outlives the parents. Although I had always been the biggest cheerleader for everything progressive when it came to intervention and inclusion, later in life, with more experience and practical knowledge under my belt, and hopefully a bit of intuition, I see that every situation in unique. I see many adults with Down Syndrome still happily living with a parent. I would like that fine; is it best for my daughter? She seems to think so. Even if she didn’t happen to have Down Syndrome, I believe she would be a very quiet, sensitive ‘home-body,” a bit of an introvert, like her mom.
Keep in mind, although we strive for, and envision best case scenario for people with special needs as living full, rich lives, for all intents and purposes, my daughter, in many ways, is still basically a six-year-old. Is it really necessary that this ‘six-year-old’ live on her own? I suppose the lifestyle does have growth opportunities that can’t otherwise be duplicated; but how can it possibly be wrong for my child to live with a parent. And that is my own, controversial viewpoint on that.
According to US News' and the National Down Syndrome Society, mortality statistics indicate I have about 35 years to go, my daughter’s father, her co-guardian has 25; and my daughter has about 45 years. That leaves us a 10 year gap of no guardian for her. She does have two siblings who will be in their late 50’s during that period.
At this time, we parents are wondering how to proceed. So far we’ve discussed finding the best group home situation possible; getting her on a waiting list, which is formidable for the nicer ones, and just wait to see how we feel at that time. Right now, my instinct is, my babe is staying right here.
Thank you for letting me share this little bit of our lives with you.