The Adopt a Family Program

When Mark was little, every outing we took was a challenge. Sometimes, even between the three of us, Mark would manage to get away from us. He was an adorable streak of lightning with loud, garbled acclamations wherever he went.

We understood this to be part of Mark’s curiosity about everything around him, but the rules for safety were not being followed. At first we panicked and would frantically search and holler his name. This became our family joke: “the Millers are here, the Millers are here!” It was always hard to miss us due to the fuss and noise of us.

More often than not we would find Mark smiling in the arms of a community member. He had a favorite type of woman at that! Mark had learned to appreciate big women from his Richard Simmons exercise video, so we learned his system for choosing whom to sit with at church. He always started out sitting with us, but as the service progressed, he would wriggle out into the center aisle, and scout for a new family to sit with.

After church, we had to locate him in the crowd as he shook hands and visited the parishioners; received many a wink and “knowing smile” from them, and then we would all go home as one happy family.

Vacations were always fun, but again, modifications were required. Camping with Mark was a work out because he wanted to meet everyone in the camp- and stay to visit and have a meal with them. We rotated social duties as to who would take shifts of following Mark to the various campsites. We met some fantastic people who, unfortunately, encouraged this behavior in Mark. What else could they do? He was irresistible!

For our part, we didn’t want others to think we were just letting him run amuck unattended. The real challenge was at night. Once in the tent, Mark would get a second wind. He would try to get out of the tent to “go visit, hike or swim, etc.” I would not be able to sleep for fear he would get out of the tent and get lost or worse. After a few sleep deprived camping trips, I learned to bring a simple solution.

Once we were in the tent, I would safety pin the zipper, so it could not be opened. Mark had not mastered opening safety pins, let alone in the dark! Consequently, we laughed ourselves to sleep as Mark tried to find a way out of the tent. He was smart enough to know he got in there from somewhere, and that tents might be another raisin test (This piece is coming soon). He didn’t give up easily when the night diversions called to him, but finally, he would fuss around getting in and out of his sleeping bag, and once I pinned him in there too.

Taking a road trip from California to Yellowstone National Park was something we had always wanted to do. It was a daunting idea for us because no matter where we went we pictured us running all over the place looking for a lost child. Comfort comes in strange ways! As soon as we had set up camp in Yellowstone, Mark went “visiting.” He met the folks directly across a little road from our campsite.

It was a couple and their two teenagers and they shared a snack with him. By nightfall we had met them and were reassured they were nice people and they assured us it made them happy to have Mark around. He ate dinner with them, but he had to sleep in our tent so I could pin him in for safety. For the next few days, Mark spent so much time at the next camp; we were missing him very much. The family insisted in letting him move in with them.

He even dragged his “stuff” over there. Each evening all of us would go to the nature presentation as if we had known each other for years, but Mark sat with his new friends. That was Mark’s longest Adopt a Family stint and it left us realizing how much he savored his independence from our intense involvement in his every move.

Read another one about a unique toddle movement called the Jib-Skid, click here

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Free Food…Everywhere

This was an addition from Bonanza and The Hot Dog Man

Gene’s reaction to making Mark happy seemed to be common with mostly everyone in our town. It made them feel good to give Mark free food. When we went anywhere, Mark was running on his hyperactive 150 volts. I have to admit he’d readily slow down to eat something. When we realized this pattern, we would approach all small storeowners, hot dog stands, and food kiosks, introduce Mark and ask them not to give him free food.

Invariably, he would round the bleachers at any little league game with a juicy hot dog and a free soda. Why did people do this? Especially, because Mark was supposed to be playing baseball – in right field and he’d be getting free food at he snack shack! Mark is 18 this year, and just last month Steve took him into a café for lunch. Steve went to the men’s room. When he returned, Mark was sipping on a bottle of beer! Steve asked the bartender if Mark had paid for the beer to which the bartender nodded affirmative, Steve was so stunned he failed to ask if he had checked Mark’s age.

In disbelief we filed this under “free stuff.” Once in Santa Cruz, a restaurant owner offered our whole family a free round of beverages. We knew this was because we had Mark with us. Did they think free food and drinks would be a consolation prize for having a special needs child? Well, they were right about that. Who would say no to a few perks?

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Bonanza and The Hot Dog Man

Shopping for groceries with Mark took courage, endurance, and patience a mile thick. Large grocery stores were getting to be just out of the question. He always disappeared. However, he was predictable. It just took time. He could be found behind the meat counter, the restroom, or helping to bag groceries. But once, I found him riding in someone else’s cart!   After convincing him to come with me, as if I was the stranger, I decided I could not shop like that anymore. The following week we went to the smaller, local Bonanza market. Of course it was more expensive than Albertsons, but my nerves could handle a market with two aisles and nowhere else for Mark to go. No matter how many times he turned a corner in Bonanza, he always bumped into me.

A sweet Chinese couple ran the Bonanza market. Gene was the Bonanza meat butcher as well. He was most helpful in assisting me with Mark. His solution was brilliant. Every time I went in to Bonanza market, Gene would give me the “knowing smile” and ask,” He like hot dog?  He want?” He would be dangling a weenie the size of Mark’s arm and enough to keep him busy for the duration of the time I needed to shop.

We shopped at Bonanza until Mark was much more grown up and would stop in occasionally for emergency items. Even until Mark was in high school, just seeing Mark, Gene would happily charge over to offer Mark a hot dog. I assured Gene we didn’t need the hot dog anymore, but he would be crest fallen. “He want?” he implored of Mark.”  “I want!” assured Mark. And there would be this short high school kid walking around the store eating a hot dog. “He happy,” Gene would say, “He happy now.”

Gene and his family spoke Chinese and/or very broken Chinese/English. Mark was always mesmerized when Gene spoke to us.  Mark had and ear for English, which he nonetheless articulated poorly. He had had speech therapy his entire life. Poor kid could barely make half the sounds in the alphabet, and his rate of speech was so fast it wouldn’t have mattered. Another time, when he was in middle school, we had begun to tease him when we could not understand him; we would say. “Slow down and speak English please.”

Mark loved engaging other people. Once, in Bonanza, Gene had friends visiting. They were speaking rapid Chinese when we got there, and Mark must have felt something twitch inside and he loudly blurted out, “Slow down and speak English please!” They gave me horrified looks. I froze with embarrassment, and did what I always did when Mark did his things like he did. I swallowed my pride and gently tried to explain he had Down syndrome. They looked blank, so I did the really bad thing. I’d point to the side of my head and say he was retarded and didn’t know any better. ”Ahh so!” they mewled with more “knowing smiles.”

When Mark was a baby I swore on his baby blankets I would never sell him out like that, but it felt better to do it then, than to admit I was a crappy racist parent who let my kid insult people of different nationalities. Soon, everyone was smiling and bowing. After hearing Mark’s apology, I think they finally realized what was so funny! His English sounded like it came from Jupiter.

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Locomotion: The Jib-Skid

Our Son the Cheetah

When Mark was eighteen months old, he discovered the “Jib-Skid.” The world was becoming an interesting place and he had made it clear he was not going to miss any of it. The Jib-Skid was his first independently invented form of locomotion, although it was clear it had either come with this genetic package, or he had seen it somewhere else…. For the record, with months of physical patterning, we had been trying to teach Mark how to crawl on all fours. Patty, the physical therapist and I would crawl around the floor around him and move his arms and legs in a crawl sequence called “patterning” so he could see and “feel” the rhythm. He would sit and watch us with obvious disinterest and would object to this very boring form of entertainment by repeating his one complaint hoot after another until we stopped. Although Patty and I firmed our thighs up, Mark’s opinion of learning to crawl was clearly that it tedious and slow.

The “Jib- Skid” was his chosen mode of transportation. No matter how we describe it delicately, it was a genuine chimpanzee scoot. Mark would sit, shift his upper body weight to his hands and swing his legs under him. As his upper body strength and coordination matched his growing curiosity and motivation to get around independently, there was no nook or cranny safe from his attention.

So there he was with his cute flattened face, button nose, slanty eyes, and his smaller, low-set ears, strong upper body, hooting unintelligible words in public. In addition, Mark had monkey feet. They were very narrow at the heel and wide in the foot. There was that Down syndrome fact # 6; a wide space between the big toe and the rest. I admit in shame, I tried to keep shoes on him all the time to hide those peculiar feet. I took him everywhere, which meant I had to carry him everywhere. To this day my posture lists to the left!

When I could carry him no more, I’d gratefully put him into stroller or a grocery cart and try to do errands and shop. He’d hoot and howl and make the sign for “Down”. If I was getting groceries, he would systematically throw out groceries in the cart within his reach. Oh, yes, I gave in and just sat him on the floor. Sometimes I was so desperate for time, I would just tell the checker Mark was on the floor and not to let him scoot out the door! And I kept shopping not knowing if one of my errands that day would be a trip to jail for child endangerment or abandonment. Mark had no qualms; he’d hit the ground jib-skidding and hooting with great joy. His enthusiasm was contagious. People that had seen Mark grow painfully slow actively cheered him on. Imagine being in a large super market, and people are encouraging your toddler to “Go! Go fast Markie!

And he’d disappear around the aisles, jib skidding under people’s feet, chasing shopping carts of people who called out to him. This was a no fear activity for Mark. Every person he saw showed him a positive reaction. The skid made it hard to keep up with Mark, but I could pinpoint his general direction by his exhilarated hooting. Initially, I panicked for all the right reasons as he left my protective sight. I learned to use those giant super market mirrors placed near the ceilings to keep an eye on him. (Ah! That’s what they’re for!).These were the first months I knew I needed my community’s help in raising Mark. They would come to know him as a favorite son, and I would forever be known as the mother of Chimp Boy.

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The Sibling

The Sibling

Ryan was three years old when Mark was born. Needless to say, no matter how hard we tried, Ryan became lost in the initial craziness. There was no mystery about it. Ryan let us know in no uncertain terms that this brother was a disappointment. He couldn’t play ball, go fishing, or shoot arrows. He was too small to do anything fun. He never wanted to get out of his cradle. For heaven’s sakes, he was in the living room in that cradle all the time! Mom, he said, “We have to teach Mark to be a brother okay?” He won’t get well unless we go out and play. Won’t get well? Ryan thought Mark was sick? I had figured on a few more years before having to explain to Ryan that Mark would be different from his friends’ little brothers. For now, it was a blessing to lay that little white lie at Ryan’s feet. “Yes, I lied,” Mark needs more time to get well…

In response to Ryan’s observations we began to take Mark on more excursions. We went outside more as the summer came on, took him grocery shopping, to the movies, etc. What we learned from Ryan was that we began to explain that Mark was not a sick child, just different. And POW was that clear when anyone saw him with us. At a year old, Mark weighed 18 pounds and was not mobile. He lived on my right hip. Human beings have genetic radar that instantly recognizes when another human is genetically different. It magnetically drew people to us in pubic places. We received them graciously and satisfied their curiosity with more little white lies. I lied about Mark’s age for the first four years of his life. A child of three should be running around in public and mine was always on my hip. I could control the response from strangers from a disappointed “Oh, he’s three and not walking yet?” which would depress me for the rest of the day. Or, since he was so little anyway, I chose to say he was a third his age, which would elicit the comment:” He’s so big for his age!” and that would assure me of a more positive thought to carry home. Then I could cry there instead of the minute I got back into my car. Wherever I cried, Ryan would cuddle me and say, “Mom, Markie will grow up big like me pretty soon.” I would feel like the luckiest mom in the world and go hide in the bathroom to cry some more. I would lean into the mirror over the bathroom sink and pray to Annie Sullivan to help me do right by Markie. Then, I would make the sign of the cross and renew the “Oath” to myself. My mom used to make the sign of the cross when she made a pie, and they always turned out fabulous. I needed more strength than just optimism at this point and that time honored ritual became a starting point where hope and denial evolved into a simple daily prayer that Markie Sparkie would grow up big like Ryan and create his own holy sparks for the divine fire of his own life.

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