Down Syndrome: “Gregory”

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gregoryOn April 19, 1983 we heard these words from a doctor, “I believe your newborn son has Down’s Syndrome. I encourage you to take him home from the hospital, but he probably won’t be able to go to school, run, read or write.” Those words were very sobering concerning our son’s prognosis. They were also words we chose not to believe. We would not put a limit on our son’s abilities. We did take our son, Gregory, home and began an incredible journey that has been filled with ups and “down’s” that have not stopped.

We were determined to research everything we could find to help our son. Over the next few years Gregory experienced medical problems such as a heart defect, a serious, mixed seizure disorder that was uncontrollable, gastro problems, respiratory problems, chronic infections, surgeries, unable to regulate body temperature, etc. Gregory had various speech therapists, physical therapists, occupational therapists, seven different schools (public, private and home), medical specialists of every sort, behavioral psychologists, alternative treatments, supplements, etc. We began to notice that Gregory wouldn’t establish eye contact, didn’t want to be touched in some places and would scream as if in pain when we brushed his teeth, and not feel any pain in other areas of his body. He would yell if he heard different sounds such as a hair dryer, the ocean, music, or a vacuum cleaner. It became increasingly difficult to take him anywhere publicly like a store, church, movie theatre, etc. He would usually end up in a corner moaning and covering his head. So we didn’t go out much at all. He didn’t express emotion and was banging his head and doing other self-abusive behaviors. He was demonstrating all kinds of self-stimulating behaviors and not developing speech. His coordination was poor. Then came the diagnosis of autism.

As the years progressed, the labels and diagnosis’ poured in. Our hope was diminishing and the answers were running out. It was now 1993 and Gregory was 10 years old with only a small amount of improvement, but little did we know that everything was about to change. We had heard about sensory integrative therapy and felt Greg would benefit from it. We found a therapist who taught us how to do it. We began seeing improvement. The therapist had just recently returned from visiting a Dr. Berard, who had trained her in how to do auditory integrative therapy. We tried it and what an amazing result for Gregory. Following the first few sessions of therapy, he started talking. The first word he spoke was “yes”.

In 1995, a friend introduced us to National Association for Child Development and on February 22nd of that year we took Gregory for his first evaluation with Bob Doman. We were at first cynical, fearful, and not sure what we could learn after “all we had been through”. That day forever changed Gregory’s life and ours for the better. It turned out to be the answer to many years of prayers. A home program was set up to address Gregory’s tactile problems, his dominance issues, his unusual behaviors, his language difficulties, mobility problems, auditory problems, etc. Mr. Doman even made us aware of a thyroid problem that had been undiagnosed in Gregory. That initial evaluation accomplished a lot more that a home program. For the first time in 12 years we had someone else helping us prioritize Gregory’s needs. We no longer needed to run all over going from therapist to therapist. We could stay home and do the program. It saved us money, time and a whole lot of energy. There was hope again. We could relax and spend time enjoying our son instead of always researching and seeking endlessly for answers because NACD did that for us. NACD spent the last twenty years researching and developing new treatment techniques. So many of the pieces that others are trying to fit together NACD has already put together. The folks at National Association for Child Development were nice, friendly and helpful, unlike so many professionals we had dealt with in the past. Anytime we had a question, they had suggestions and were always looking for new ideas and alternatives. We have been acquainted with terms like proprioception, auditory enhancement training, The Listening Program, trigeminal stimulation, hyperacute, etc. There was a lot we needed to learn and NACD was been kind enough to teach us. The best part was that the program worked!

Greg will be 18 years old on April 19, 2001. Thanks to NACD he has a full and enjoyable life. He competes statewide in horse shows entering categories of barrel racing, showmanship, equitation and trail. He competes in track and field events, bowling and baseball. He enjoys showing off his numerous trophies and ribbons. He is a forever Star “Trekkie” and loves lightening (studying, observing it, and collecting photos). He enjoys drawing, going out to eat, shopping, etc. He has mastered all of his Nintendo games and has now conquered the computer. One of his many hobbies involves trains (HO, wooden, etc.). He has been honored at banquets and has the best of manners and is very socially appropriate. He reads and writes. Greg has a winning smile and demonstrates a full range of appropriate emotions. He no longer has difficulty with sounds and is the best of our 5 children at vacuuming. We have to stay for hours at the beach because we can’t get him out of the water. His ability to regulate his body temperature even improved which enables him to participate in more outdoor activities. He is seizure free and has a cold maybe once a year. He is healthy and strong. Greg’s area of greatest need continues to be his auditory processing and speech, but we are still working and not placing limits on him. We are now looking at vocational training opportunities and hopefully one day an independent living arrangement. There’s not enough thanks or money in the world to express our appreciation for what The National Association for Child Development has done for our family.

We are not a wealthy family and we have had to come up with creative financing ideas such as garage sales, donations, etc. to pay for the program. It has been worth every penny. NACD works hard to keep the costs down. We have 3 adopted children who are presently on the NACD program. Our state adoption workers were so impressed with Greg’s program and progress, that they made the cost of the NACD evaluations part of the children’s adoption package. They are benefiting greatly. We are looking forward to the next few years so we can share their achievements with you, also.

With sincerest appreciation, Bill and Donna Ortt

This is a humorous paper I wrote in trying to deal with the frustrations of stopping Gregory’s self-stimulating behaviors. This dealt specifically with his obsession of playing with string. In re-reading it, I am amazed at how far he has come. Years ago, it felt like we would be dealing with these behaviors the rest of his life. It took a lot of persistence and work, but it is rare today to see Greg do any of the old behaviors. He is a kind, calm, socially functioning person who has a lot to offer society and his family. He gained these tools from NACD. “Thank you” can’t begin to express how we feel. Keep up the good work. The work you are doing is impacting so many lives for the better. With warmest regards, Donna Ortt.

GREGORY’S RESOURCE MANUAL
A Guide for Replacement Behaviors

(In other words, what do you do when Bob Doman tells your mom, “Don’t let him do stimulating behaviors, like playing with string.”)

Dedicated to Greg’s mom for her untiring efforts in extinguishing his stimulating behaviors, like play with string.

If you find yourself in the position of being without a string for one reason or another, here is a list of alternatives that work quite nicely. They have all been extensively field tested and will serve as a replacement for string.

  1. Find a woven rug that is off the beaten path. Try to locate a snag in the rug. If none can be located make your own. Slowly, so as not to damage the weave, pull the snag until it is approximately 42″ in length. The next part is a little tricky. Locate scissors or a knife to cut the length off at the rug. If you cannot locate an instrument to cut, then continue the pull until the section of the weave runs out. Of course, this method leaves a more obvious mark on the rug. Hopefully, it will be hours before it is discovered.
  2. Since this idea only works for a short time, here is a second one to try. When someone pulls out gift wrapping paper, this is your cue. With this idea you can hit two birds with one stone. After the person finishes wrapping the gift they usually use RIBBON!! When their attention is diverted, grab the rest of the ribbon and RUN! There are a number of good hiding places to store your treasure: under your pillow, inside your dump truck, tied around toys, wadded in your pocket, etc. You can think of your own places, too. Now for part two. Grab the TAPE! It is a great alternative when all string has been purged from your environment. You can use tape anywhere and everywhere and it stays where you put it. It will stay on the floor, on your linens, on your toys, on mirrors and windows, on your books and cassettes, it even hides well on toy trains. It can take your parents weeks to find all the places. But beware, this idea usually provokes an outburst from them. When this happens, just use your tape to tape their door shut. You don’t have anything to lose at this point.
  3. By now you should be getting the hang of this. Let us move on to more sophisticated alternatives. These alternatives are more deceptive to the casual eye. Hopefully, this deception will provide you more hours of entertainment without being discovered. Nonchalantly, remove lint from the your clothing or others apparel. This gives the appearance of being helpful. It is also small enough to palm when parents are looking.
  4. Another great idea is RUBBERBANDS! Who would have thought a rubber band could have so many uses and appear so harmless. I did!! They can be cut in different lengths. They come in various colors, shapes, and sizes. They are so versatile. They offer more than just plain strings. Rubber bands are also easy to acquire anywhere: doctors’ offices, schools, desks, off the morning newspaper, on the ground, office supply stores, and most public places.
  5. Keep your eyes open for helium balloons. Have you figured out why yet? That’s right! The tail or ribbon on the balloons can last you for weeks. Your parents won’t be any wise. They thought the ribbon was thrown away with the deflated balloons.
  6. If these ideas fail, you can try some riskier solutions. Notice that at the bottom of your or pants there is a hem put in with thread. Grab an end and carefully start pulling. With any luck you can pull off a few inches without losing your entire hem and becoming obvious.
  7. You should be getting the idea of alternative replacements for string in your home. Try some of your own ideas. It would be interesting to have a report from you on your ideas and how they worked. We must stick together to protect our self-stimulating behaviors that provide us with hours of entertainment and escape

Reprinted by permission of The NACD Foundation, Volume 14 No. 2, 2001 ©NACD