Down syndrome Day Care and Preschool

Public Day Care/Preschool

This is the time when I began cut my “bitch mother” teeth.  I now understood that some people in our community would not support us in our quest to educate Mark.  So, we set out to find those who would.

Generally, preschools for toddler age children have some requirements: potty trained, reasonably well-behaved, functional language skills, and some independent self help skills. Mark had none of those, plus he needed weekly speech and occupational therapy sessions. I met a few preschool directors who sympathized with us and were ultra kind as they declined the challenge. We knew this job was not for everyone, but it didn’t take too long to find directors who were enthusiastic about taking Mark on.

Those wonderful people are out there. Look for them. Find them. Hire them. The first thing everyone wanted to know was,” What special things should I do?” First, they were happy to have the therapists work with Mark in their living rooms, ( I know this was a welcome break for them as well!) Aside from using his basic signs, I insisted they do nothing special or different. EXPECT him to rise to your standards.”  Their eyes would bug out, eyebrows shot up, and mouths would drop.  Its amazing, I’d explain. Treat him like everyone else as much as you can. It just takes a long time for him to learn, then, he won’t forget.

Praise for Sunny, Kathy, Carol, Cindy, Mimi, and Little Friends Day School

By age five, Mark was an emerging independent entity. He had first hand knowledge of the preschooler’s working world. We had not just tried to prepare him with isolated therapies and isolated lessons. He learned in the real world what the real world expected of him. If he didn’t play fair, or took a toy from someone else, they cracked him over the head or wouldn’t play with him. If he didn’t use a sign or try a word for what the wanted, he didn’t get it; even from his playmates.  He learned a day could be spent in time outs or practicing to communicate and cooperate.  He got no sympathy from anyone for poor behavior or choices. He did receive sympathy at the end of a busy day for just trying to follow the rules.

It took tremendous effort for Mark to make his way through each day. He worked extra hard to comprehend the adults and playmates in his world.  I was sleepless many nights with guilt about “working him too hard.”  There were  many people in my community who disapproved of our approach and thought we were asking too much from such a young child with so many delays and cognitive disabilities.

I always swung around to the facts about Helen Keller. Hell, if she could learn, so could Mark!

I know it worked because none of us knew what we were doing! We were willing to try everything we thought would teach Mark what he needed to know. A failed idea became a stepping-stone for another trial. No present manual or agency was strong enough to truly guide us or criticize us in the way we were teaching Mark. We were, however, on Annie Sullivan’s protocol for teaching learning impaired children. I recommended my teachers watch the 1939 version of the Miracle Worker with Anne Bancroft as Ann Sullivan teaching (Patty Duke’s) Helen Keller. I did not defend Mark’s impulsive, poor behaviors because I did not want my child to grow up that way. I usually defended my teachers and supported them with my condolences when they felt under qualified to teach Mark. I assured them they needed no special ed. diplomas or certificates to make them any better teachers than they were,… and to watch the Miracle Worker again for inspiration. It was the first of many years of Mark’s No Mercy program for Growing Up program.

How did we know we were doing the right things? These women, their assistants, and the other children they cared for, taught Mark everything he needed to know for kindergarten. Yes, the little preschoolers learned about Mark’s Down syndrome and how it made him the same and different. They were in on his little secret; and his strengths and weaknesses.  He became more verbal, more mobile, more social, less impulsive and more independent in all self-help skills. Praise be leveled at these people whose very environment helped to potty train Mark between three and four!  I sing praises for their cheerful classrooms, and cozy living rooms. I celebrate their daily support for me as a parent with a “different” child.  I truly revere the commitment they showed us in Mark’s early education.

Flub Dub

One day Mimi told me she would be teaching the kids about their hearts. Even though Mark was five, should she expect Mark to participate? Of course I told her, since he has one he should know about it. For the next few days, Mark kept uttering a new word. It was more of a chant, but I couldn’t make it out. Later that week, I asked Mimi if she knew what he was saying. “Oh yes”, she said proudly. She led Mark and I to a foot high plastic model of a human heart.  He traced the arteries for me and placed my hand on his heart. “Flub dub” he said. He signed for me to listen to his heart as he said out loud, “Flub dub, flub, dub, flub dub.” It was a day to remember. Our  beating hearts sang flub dub double time all the way home.

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Mrs. Scary’s Preschool

At three Mark was nearing mobility, had emerging but unintelligible verbal language, could sign his needs, some feelings, and name basic farm animals.

I had to return to my teaching job, and Mark had to go to Day Care. I had known all along the county had a preschool for special needs children. And it was FREE. It was 1989.

Our county preschool for special needs children was housed at our county fairgrounds. I went to visit. From the outside I walked up to a 10x 12 patch of dirt and weeds, surrounded by a dilapidated chain link fence. A few 1950’s red metal tricycles lay around. Several preschoolers were milling about the yard, and no supervision was to be seen. That was IT for the outdoor activities. Inside, the classrooms were dim and largely undecorated. One youngster was huddled under a teacher’s desk. I had been there for 15 minutes and had not seen an adult anywhere.

Then I heard a woman screaming, “Time to come in!” I will call her Mrs. Scary. She was inside the hallway door out of view of most of the kids. She hollered a few more times and got into a frustrated rage. She had not taken one step onto the “playground” to signal the children to come in. I knew these were children with various learning and language disorders. This was a poor method to invite them back into the classroom! Her tone had clearly alarmed them as much as it had alarmed me. The more upset she became, the more they huddled at the far end of the yard. They looked like tiny criminals against the chain link fence about to face a firing squad.

I was determined to stay out of the fracas, but she shot out a last threat unless they came in- and they began to creep toward the door. I had come up from the classrooms behind her. Suddenly, as the first children approached to slip past her into the dim hallway, I saw her arm come up sharply. I can only say I had an instinctive reaction and caught her wrist on its way down to club a few kids.

I remember saying to her, “I don’t ever want to see you treat children this way again!”

Maybe I just happened to meet Mrs. Scary on the worst day of her life………

Yes, I called the director of the pre-school and the superintendent.

Yes, I called C.P.S.

Yes, I inquired amongst the special education community.

Yes, I was labeled a nosy bitch mother, and Mrs. Scary kept her job at the Special Ed. Preschool.

No, Mark did not attend the county special Ed. Class, even if it was for FREE.

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Out in Public

My friend, Kathy, babysat Mark for me when I went back to work. She said it was an easy job, and we would laugh at our twisted good fortune. Her son, Monty also had Down syndrome. Even at two, we could sit our boys on a blanket and walk away; and they would still be there when we got back!

Eventually, to get around, Mark had learned something we called the “jib-skid.” It was no less the way a chimpanzee scooted around on all fours, swinging his bottom forward to move along. But mobility was a triumph in any form at that time.

I enrolled Mark in a kiddie gymnastics class at three, even before he could walk. He would be close to four years old, and weighed nearly 40 pounds when I finally put him down for good. I just couldn’t carry him anymore.

At three, he needed to learn social rules, and how to be a part of peers his age. He had very little impulse control, so standing in line, (let alone he was barely standing!), and waiting his turn were emerging skills at best. There had to be a transition from “emerging skills” to mastered skills, but what was the answer? Where could we find the balance needed?

So I just began including him wherever I found toddlers. That’s how the local Kiddie Gym Class became our first social experiment. You should have seen the faces of the gym-mommies when I plunked Mark on the mat in the circle with their children. I knew they thought Mark would “ruin” the class, but my warrior mother instincts gathered for the battle and I’d just ignore the incredulous looks from the gym class mommies. They were patient, but could not understand it. Well, here was a place Mark could stand and safely try to walk like his little peers. Everywhere he moved there was an industrial strength mat to cushion his falls! It was a fun, active place with jumping, swinging, rolling, etc. And Mark could not do most of the things in the program. But he did want to do the activities he watched his peers do. I could accept how odd it was to include him, but I don’t regret it. The task had become to convince Mark that walking could be as efficient and easy as the “jib-skid.”

At first, the other children all learned the “jib-skid.” It became definitely harder to ignore the indignant gym-mommy comments. One day, the instructor proposed a race from one end to the gym to the other. I felt she did this to prove a point to me about Mark not being qualified to join the class. But, as this was a sort of “raisin test” I expected Mark to win. Which he did. He “jib-skidded” into racing history. I felt so smug!

Mark took his sweet time learning to walk. He weighed nearly 40 pounds when I finally put him down for good. I just couldn’t carry him anymore

Still, we kept on doing “normal “family outings and expected Mark to participate. We knew those family activities would be absolutely abnormal, knew we had to have a plan, delegate “vigilant eye” shifts, and steel ourselves for the inevitable public scrutiny our family would need to endure. We would sally forth and hope to endure each public experience with Mark, with grace and aplomb

Take the word Aplomb; notice it sounds like A Bomb.

Wherever we went, we attracted attention. Mark expressed himself verbally with loud unintelligible word-like calls and charged around doing his “jib-skid.” Picture a busy place like the Monterey aquarium….and he’d disappear into hundreds of people. I couldn’t find him, because he was on the floor. He scooted under and in-between crowds of feet while we ran stooped over trying to spot him. Panic and thoughts of impending lawsuits, negligence, and CPS investigations would nearly paralyze me; but I was part of a search triangle, and had to cover my corner. We hollered for tourists to “stop the kid on the floor!” Sooner or later we could expect a friendly sort to dangle Mark up over the crowded heads and holler back, “Got’im!” We’d run to get him like game show contestants who walk away proudly with the booby prize.

When he finally learned to walk, he ran instead. At that time, child harnesses were in vogue. I thought, “How perfect!” and bought one with a rainbow leash immediately. We went to the Steinhardt Aquarium and Natural History museum in San Francisco. I explained to Mark that the harness would keep him close to us and he wouldn’t get lost. It took all of us to harness Mark up and tugged on the lead. He looked like a trussed up turkey, so his reaction wasn’t startling. However, he began to scream and holler in tones we had never heard before. It was the sound of utter humiliation. Even with all his modifications and contrived activities he had never felt indignant. We would pay for this transgression.

The verbal complaints elevated to an Oscar award type collapse on the pavement complete with piercing screams and a death roll worthy of an alligator. I imagined the headlines again: Parents Humiliate and Abuse Handicapped Child in Public! I tried to calm him without success. Giving in, I undid the harness and dropped it in he nearest trash barrel. Mark got up and took off running after a flock of terrified pigeons. To this day it is one of my favorite pictures.

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Learning From Peers and Demanding the Best

When Mark was two, I took a leave from my teaching job to stay home and co-ordinate his speech, physical and occupational therapies. We had hours and hours to practice and he needed that! The following year, when I returned to work, he went to a “regular” daycare instead of the county special education preschool. I had learned that the most precious commodity to help Mark learn was any crowd of non-disabled peers. They spoke well, behaved well, and dragged him all over the playground to learn social rules. And they matched him punch for punch literally. We helped with ideas, but the kids were the best with common sense and  “learn it or you can’t play with us” attitude. Yes, they changed game rules often to help him stay in a game, but most of the time, they kept the standards’ bar as high for him as each other.  We tried to never overprotect him from those real world lessons. His teachers and other parents often thought we were heartless, but we trusted his peers to do the right things. So he learned and learned and learned.

Consequently, against our school districts initial refusal for a full time educational aide for Mark in kindergarten, we sent him proudly and trusted him to do  “regular” kindergarten class alone. He had been in “regular” pre-schools with most of his peers anyway. The year went well, with kinks along the way.  Mark would not tolerate crowding or loud, chaotic noise, such as when the bell rang for recess. In a crowd, he would straighten his arms out and swing them. Unfortunately, some of his classmates would get clubbed in the head at times. This did not go over well with the other parents!  So, we simply informed the children why Mark did that and asked them for solutions. They suggested that at lining up time, everyone would stay a few steps back from Mark.  For our contribution, we took a field trip to Open House Day at Beale Air Force base for a noise desensitization experience.  We had no idea it would prove embarrassing and slightly cruel! Mark sat on Steve’s shoulders and when the jets screamed overhead, Mark screamed onto Steve’s head for half a day. Everyone stared at us. But we stayed until Mark realized sound could not maim him. It worked. Steve, however disagreed.

However, Alleluia, even after a few more kinks, apparently because of a few kinks in his program, the district agreed to hire the instructional aide full time for the first grade to assist with activities in general and modify the lessons when necessary; which was always.

Mark loved school, and learned most of life’s lessons from his peers in “regular” public school.  A friend of mine with a daughter with Down syndrome had said, “ If our kids go to school with friends who don’t talk, or know social rules, how will they learn to have a conversation or do the right things?” She had a point, so we stayed with “regular education.” But behavior was an issue. A few times throughout the school year, our school psychologist would visit with Mark’s class while he went on an errand with the teacher, and the kids could tell her their “Mark stories.” This was an excellent way for the students to cathart; ask questions about Mark and Down syndrome, etc. Once, they all drew pictures of their positive and negative experiences with Mark. The teacher laminated each page and bound it together for us. Mark loved looking in that book. He got the idea that the other kids had opinions about him, what they liked and didn’t like. He truly cared what they thought and that year he began to improve his own impulse controls. Sort of.

As Mark moved through the school system, an educational aide assisted him and the classroom teacher. Mark was more like his peers than different, but in speech and language, rate of cognitive development, learning styles, and some maturity issues, he was different.  We needed a TEACHER and the wonderful classroom teacher could not “do” Mark alone. So Steve and I went to an IEP war and got Mark a one-to-one aide. This person was not to mother Mark, She was to teach him what he needed to know, and I would be on the interview team. It was a no mercy program for Mark. No pity allowed. And I had learned by second grade to be a “bitch mother.” These mothers know school law and are not afraid of school administrators. We bring cookies and cold sodas to IEPs and we never sign the IEP until we get what we know our kids need. We shamelessly blurt out “I don’t care how much it will cost, find the money!”  Because Mark grabbed that raisin at six months old, I knew his spunk and determination would be worth the energy and every cent the school district put into educating him. Even though I behaved very badly as a bitch mother at times; I even screamed profanities at a principal once and got thrown out of his office, (remember that Stan?) we all learned a lot about how to fully include special needs kids into their programs. And we learned and we learned and we learned.

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The IEP Raisin Test

A child who will have physical or cognitive special needs is entitled to special education.

Their educational needs are determined by a team, who creates a plan called an IEP or Individualized Education Plan. A team of teachers, parents, psychologists, therapists, and school administrators work together to help formulate this plan. The IEP becomes law, and is reviewed yearly, and changed/amended as needed to suit the child’s needs. These meetings can be quite convivial or have highly contentious power struggles between parents and other personnel who disagree about proposed services. This is usually the parents vs. their school district administrators who may or may not have the funds or capabilities to provide the services necessitated by the special needs student, but by law, they must.

Mark’s first IEP occurred when he was about 6 months old. There were excellent Infant Stimulation teachers and therapists available for Mark, but we had to have an IEP to determine precisely which services, and whom Mark might need. He could still barely sit up. We went to the county school for special needs kids and sat with a nurse, psychologist, and school administrator. There, the nurse examined him for reflexes and degree of poor muscle tone, etc., the administrator cooed things like, “Mark is so lucky to have you for parents,” and “God chose you to take care of this special baby…”I wanted to scream and run out of there!

Quite suddenly, the psychologist announced it was time for the” raisin test.” The mood downloaded to somber. A great intensity crept over everyone as the psychologist extracted one tiny raisin from a small box and placed it in on the table in front of Mark. He was in Steve’s lap and I was across the table facing them both. The object was to test for curiosity (intelligence) and fine motor skills.

I knew Mark had never even seen a raisin. I was frantic. I wouldn’t feel this way again until seventeen years later when our oldest son went to take his SATs for college! But Markie zeroed in on the raisin visually for quite some time while his baby arms stuck straight out and took swipes at the raisin, getting no where close enough to pick it up. It seemed that everyone was holding his or her breath. I was a lousy mother for not teaching my child to pick up a raisin. The suspense and overpowering, quiet was agonizing. No one was oversmiling anymore.

This had become a serious undertaking that would somehow give us an idea about what kind of character Mark possessed at six months old. But determined he was! He made some weird baby noise and slammed his right fist on top of that damn raisin! More seconds crawled past, and then his little fist shot up with the raisin in a perfect pincer grasp. I knew at that moment, that nothing would keep us from progressing. What ever the point of the test was, the result was profound. I would forever encourage and let Mark take his raisin tests, fight his raisin battles, and trust he would find his way.

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