Re-introduction

I thought I should re-post our introduction for anyone from the ENKI special needs homeschool yahoo group or the DIR/Floortime on-line conference who might be stopping by to find out more about Little Frog. Here is where we were in 2006:


Thursday, August 10, 2006
Welcome to the Pond


Welcome, I'm so glad you found us! We live in the wet wilds of the Pacific Northwest. After college and graduate school, my husband and I came home and settled down near family in the small town where we grew up.

Our first little tadpole, diva frog, was born in 1998. She was early to talk, early to walk, an inquisitive little "grown-up" from the moment she was born. By age 3 she was known as mommy's little legal assistant and was quick to give the City attorney her opinion on everything. Today diva frog is a true girly girl - complete with a pretty in pink wardrobe, Barbies and Polly Pockets galor, and ballet and gymnastics classes every week. Her life is a musical and she is the star - singing every solo.

Our second tadpole, little frog, was born in 2002. 10lbs 11oz, sunnyside-up with his head turned to the side, little frog was born via c-section after days of start and stop labor and hours of unproductive pushing. Little frog came into the world with a strong startle reflex and extremely powerful lungs he was not afraid to use. For the first few months of little frog's life he screamed long, loud and hard, nursed voraciously (45 min at a time) and slept sporadically. Being the experienced frog parents we were, we declared him colicky and began to apply all the home remedies and old wives tales. But little frog was a conundrum. He detested riding in the car and screamed as if he were being tortured. He had a very high tolerance for physical pain, but could not tolerate a light touch or anything brushed against his skin. He loved the sound of running water, the vacuum cleaner, the TV, and musical toys, often rocking on his hands and knees while listening. He cried when the sound stopped. But he did not startle or even turn his head to look when you called his name or banged pot lids together behind him. He loved to be held or swaddled tightly and rocked or bounced with great energy. He would look at you and light up when you entered a room with a charming grin and a twinkle of delight in his eye. He did not care at all if you left.

He crawled with his left hand turned out. He had an uncanny ability to drive his walker, maneuvering it into and out of tight spaces like a professional. When he walked, he walked on his tip toes (sometimes on the knuckles of his toes). When he ran, which was most of the time,it was always fast and furious with little regard for what lie in front of him. At 18 months he did not speak, he did not wave, he did not point, he did not seek us out for help, he did not reference us for reassurance and he did not turn to us for comfort when he was hurt or sad or afraid. Diva frog pointed out that he never looked at her eyes, only at her mouth. The pediatrician told us not to worry, but to have his hearing tested if he did not have some words by age two. We began our own research and slowly came to realize that our little frog was swimming in the deep, dark water of autism. Deep and dark to us because we had so little understanding of how he perceived the world or how he felt. Deep and dark for little frog because he had been learning to navigate these waters on his own.

Today little frog is four years old. We are still traveling the maze of therapies and interventions. Some have helped, some have not. Little frog continues to grow and learn. He still does not talk. He only points to show us what he wants, not to draw our attention to what he sees or hears. Sometimes he comes to us for help, although he is still a fiercely independent problem solver (which makes toddler-proofing the Lilly pad a big challenge for mom and dad). He does come to us for comfort, and is beginning to look to our expressions to help make sense of new situations. He still has his smile and the twinkle in his eye and he continues to charm everyone he meets. And just a few days ago, on his birthday, he looked directly into diva frog's eyes as if to say "Look at me! Look at what I can do!" and smiled his delight just for her.

Today Frog is over 5.5 years old. Since this post we have continued with DIR/Floortime, used The Listening Program, obtained an individualized HANDLE program, started homeschooling with ENKI, started NAET allergy elimination treatments, and are just starting to work with Rapid Prompting Method. We supplement his diet with Omega 3, 6, and 9, multi vitamins, and zinc/B6. Some of the interventions that did not have any significant value for little frog were ABA, PECS, Sign Language, GFCF diet, Verbal Behavior, Vantage Voice Output System (although we are still holding out hope that he will take to the device in the future) Little Frog has made great strides in his joint attention, social initiation, and his own non-verbal communication. He continues to be a great independent problem solver and gets into everything. He pays more attention to speech and responds to his name and the words stop, wait, and no. He uses two claps for yes, but has no sign for no. He varies the intensity of his clapping to signal enthusiasm or ambivalence. He is still too loud at times (he doesn't speak, but makes every sound in the English language and some from other languages in a combination of babble and verbal stim), but has improved his ability to modulate his voice with a verbal prompt (quiet voice). He is curious, happy, engaged, graceful, charming, alert - but can not readily participate in the ideas of others even though he shows that he understands what is being asked/suggested. He is able to respond quicker to simple ideas/instructions if there is a musical cue rather than being spoken to. Picture cues have never worked for him. He taught himself to play the harmonica. He has almost taught himself to swim. He still puts everything in his mouth - but does not show signs of PICA, just a need for oral information. We have worked with some amazing professionals over the last few years and they all agree that he is a conundrum, unlike most spectrum kids they meet. We continue to grow and evolve with him and are enjoying life one day at a time celebrating all his progress and trying not to spend too much time worrying about what he is not doing yet. He is one amazing kid.

Frog Update

We are back from Frog’s first Neurology appointment. They were not able to give us any new insights, but the Neurologist confirmed what we have suspected all along. Frog is part of that rare (or not so rare, but often undiscovered) subset of ASD where receptive language, social awareness, and the desire to connect with others is fully intact, but he is so severely limited by his lack of expressive language, sign, gesture, and inability to imitate that he can’t regularly demonstrate the extent of his knowledge and awareness. He compared Frog to a few other kids he had seen in his practice who were considered severely impacted-low functioning ASD and then they began to type or write when they reached 10 or 12 years old and were able to tell about everything they had been aware of over the years - Similar to Tito Mukhopadhyay or more recently Carly Fleischmann . We have started using Rapid Prompting Method (RPM) developed by Soma Mukhopadhyay to teach her son Tito. Through RPM we have discovered that Frog knows his letters and numbers, listens to the stories we read and can answer questions about them, wants to know more about dinosaurs and cars and wants to learn to ride his bike, can read some words, is frustrated when people don’t know how smart he is, thinks his sister talks too much and he wants a dog. I’ve been trying to figure out why he can and will choose between two answers for RPM, but was so hit and miss with discrete trial. I can see two major differences: The physical motor plan for the activity stays the same and has the same prompt (giving him the pencil) and the information is constantly new – he is not being asked to do the same meaningless task over and over again. He has also started to request to write letters and after months of avoiding his voice output system, he is now exploring it a little on his own – especially the alphabetized keyboard screen. I suspect he will be writing and/or typing within the next year or two.

So our days are now structured by the rhythms and open intake philosophy of ENKI using DIR/Floortime, sensory play, communication through RPM, and lots and lots of letters. It is starting to feel like school – and we are starting to make some progress on the goals that are most important to us as a family. We also found a new social outlet for Frog – JUMP PLANET! While we were in Seattle for the neurology appointment, Jump Planet was hosting a special needs family night. We weren’t sure how Frog would react to all the people in the room, but he dove in with wild abandon. The set-up was safe and contained so we could give him the freedom to run around and choose his activities independently. He had a ball – jumped with other kids, tolerated unexpected bumps and jostles, no pinching, no biting, no meltdowns. We will defiantly be going back.

I will also be expanding my DIR experience with an on-line conference. I’ve wanted to go to a conference for several years, but could not find it in the schedule or budget to be away from home for that amount of time. Dr. Greenspan and Rosemary White, OT are putting on an interactive on-line version of the conference training starting on April 25th . Parents and professionals from all over the world have signed up – I’m excited about the chance to compare notes and experiences with this diverse group.