Thursday, November 29, 2007
Elephants walk heavy and slow
They raise up their trunks to greet people they know - (raspberry).
I modeled this with an elephant walk and a trunk (arm) raise, several times. The next day we did "hand over hand" (more like body over body) and did the exercise together. After a few rounds, he actually came back for more. I think we looked a little like baby Dumbo and his Mother. I'm hoping we will have a whole "Animals on Parade" routine eventually. (baby Dumbo and Mom statue available on e-bay. Auction closes Dec. 3)
I was also encouraged to imitate the rhymed verse accompaniment to ENKI stories with the stories we are using. This week it is "COOKIES" from Frog and Toad Toad Together
A batch of cookies Toad did bake so warm and chewy and sweet,
He put them in a giant bowl for Frog and Toad to eat.
Frog took a cookie, took a bite and said “These are the best!”
Then Frog and Toad continued eating cookies without rest.
“Stop” cried Frog “We have to Stop, I think we’ve had our fill.”
“If we do not stop eating now, I fear we may be ill.”
“One last cookie each my friend and then it’s time to stop.”
They each ate one, and then one more - they were both about to pop.
“We must stop eating” cried out Toad as a cookie he did munch,
“We need to find our will power and stop this cookie lunch”
We will try hard to stop this feast, we won’t another cookie eat.
We will not take another bite; we won’t eat cookies day and night.
We’ll put them in a box and we’ll put the box away.
But we could open up the box and eat them anyway.
We will try hard to stop this feast, we won’t another cookie eat.
We will not take another bite; we won’t eat cookies day and night.
We’ll tie a string around the box with a knot that’s tight and strong.
But we could cut the string with ease and eat cookies all night long.
We will try hard to stop this feast, we won’t another cookie eat.
We will not take another bite; we won’t eat cookies day and night.
We’ll tie the string and place the box upon the highest shelves.
But we could climb back up and get the cookies for ourselves.
We will try hard to stop this feast, we won’t another cookie eat.
We will not take another bite; we won’t eat cookies day and night.
Frog took the box of cookies to the yard and called the birds,
“We have cookies here to share come get them and they’re yours.”
“Birds came and took the cookies Toad, now we can’t go wrong!”
“I’m going, Frog, to bake a cake, I hope your will power’s strong.”
We are doing movements for several of the verbs, signs for "cookie" and "stop"; and emphasising words with a PU or UH sound (sounds we are working on in speech therapy with The Animated Alphabet). We are also baking and eating a lot of cookies! Frog is taking me to the pantry for cookie mix on a regular basis. Frog laughs when I say "A batch of cookies Toad did bake" while we make cookies. We also made spaghetti sauce (can't live on cookies alone). I wanted to make it ahead of time so I could put a quick lasagna together for Aaron's Team tomorrow - a home visit with all the therapists. Frog and I sampled some for lunch the day we put it together - Bolognaise Nuevo. I was able to put in onions, mushrooms, peppers and zucchini, as well as ground beef browned in large "meatball" chunks. It's nice that we have moved on from PBJ and Lunchables.
Our other breakthrough has been rediscovering TAMO
"handling always applies forces associated with independent movements; that is, the therapist does not support nor move the patient; instead, the patient plans and generates the movement in response to the therapist's 'loading', which accentuates appropriate gravitational influences. That loading force is almost always directed through the patient's body to the support surface. The exact direction of this loading force constantly changes with movement. However, the observer cannot see that. You should ask your child's therapist to apply that 'loading force' to you! TAMO handling feels good; it gives a sense of security (stabilizing to the support surface and moving from the support surface) and it allows you to move with ease. Careful, it's easy to get hooked on TAMO treatment! This type of handling requires a good knowledge of the relation between pressure distribution at the contact with the support surface and the associated body posture and movement."
We haven't had a lot of training in this, but our private OT showed us how to use loading force along the gravitational vector of his pelvis while he was playing to help him stay focused and feel grounded. We used it mostly to help him calm himself when he seemed to be loosing his proprioceptive sense. But after watching power struggles at school to "keep" him in his chair or at an activity and then watching him go through similar struggles at speech therapy I decided, instead of trying to not be too distracting during the appointments - maybe I could be a part of them. I sat behind his chair and applied the loading force - gently, dynamically(moves with him rather than restricting or supporting him), at a pace of 60 beats per minute. The difference left both the speech therapist and me speechless ourselves. He went from screaming, crying, trying to get out of the chair or away from the activity, to sitting in the chair for 20 minutes, lots of attention, some complaints - but not to the point he disengaged from the activity, attempts at specific sounds and use of his voice output system, looking at books, playing "new" games. When he finished the appointment and I stopped applying the pressure, he remained calm. He put on his coat, put away his Vantage with some guidance, and WALKED down the hall to the waiting room QUIETLY. My new dilemma is how to use the technique at home when its just the two of us. It will be a topic of discussion tomorrow!
We are on the right track - I can just feel it.
Friday, November 16, 2007
After listening to Frog's teacher's concerns and mixed messages -8:30am "he's doing really well, I'm so pleased", 3:00pm "I'm really concerned, he's not progressing as I had hoped. I think it is sensory and I'm concerned his program is too scattered. I think we need an IEP meeting to discuss his behaviors, make sure we are all on the same page and not duplicating what you are doing at home." (...?!!!!??) I spent a day observing Frog at school. I've been in his class on a regular basis this year because I was walking him to school every morning. I noticed both kids (Frog and his classmate) did a lot of screaming, crying, and trying to get away, but I always got reports of "good day." I gave the benefit of the doubt that having an extra adult in the room made things more chaotic. That changed after I watched what was going on. Frog's teacher was especially concerned about his "behaviors" meaning he frequently bit his wrist and pinched the teacher or pulled her hair. I am familiar with this behavior. It has been going on for the last two years he has been in her class. At home the behavior has steadily decreased and I assumed that was also true at school. I knew the teacher responded by holding his hands firmly away from his body so he could not bite or pinch and turning her gaze away from him until he calmed down. The morning of her phone call, while I was in the room I watched one of these episodes. They were sitting at the snack table. Frog's wrist went to his mouth and he pinched the Teacher. She told him "NO!" and restrained his hands. He calmed, she let go, and he went after her again - 4 times in a row with the same response from the teacher. I stepped in and suggested that she direct him to his Vantage Voice Output device, help him select the emotions menu and encourage him to "tell" her how he was feeling rather than "show" her with a pinch. When I demonstrated, he chose "excited". The teacher was clearly not impressed - although the picture for "excited" looked a lot like Frog in that moment.
The following day, I checked his Vantage when he came home - not one single word had been accessed. I had encouraged the teacher to use the structured nature of the program to encourage him to use the Vantage. I had even modified activity lines and made pages to suit her lesson plans for him. But she left the device on the snack table where he could access it if he wanted to, but he was never encouraged or directed or shown that it was appropriate or acceptable to use in the classroom. We and several other families had gone through the same thing with PECS training in this classroom. One family got the district to bring Pyramid PECS trainers to town to train the staff and parents - I wasn't there, but heard that most of the staff were more concerned about where they were going to go out to lunch than learning the training techniques. PECS books were regularly left zipped up in backpacks or put away on high shelves until snack time when they were used as choice boards. I paid my own way to get the training in another state when it was offered, then went into the classroom (for 4 weeks) to get the training started. It never worked for Frog, but we got several other kids off the ground. It was apparent, however, that this particular teacher did not want to bring anything new into her program and assumed that communication was the SLP's job. I could see we were still on the same road with the Vantage.
The teacher began taking functional behavior data on Frog on a Thursday. I asked her to e-mail me the results. I was stunned - not only by the number of times he was biting and pinching, but by the fact that the only categories she could see for "perceived function" were avoidance and escape. I went into the classroom the next day and took my own data resulting in a 7 page write-up of observations.
I spent the weekend celebrating Diva's birthday, then got down to IEP business Sunday evening after the kids had gone down for the night. I finished at 3am and shot a copy of my observations and conclusions off to Frog's Psychologist and private SLP. Both confirmed that I was not crazy to be highly concerned and agreed that my plans for home school would serve him better. I e-mailed my seven page document to the IEP team 3 hours prior to the meeting. I copied the Principal and the Special Ed Director - who both hightailed it to the meeting along with the school psychologist invited by the teacher. My conclusions prepared them for what was coming:
III. PARENTS CONCLUSIONS:
While I did see many examples of the behaviors that were brought to my attention, they did not seem as dramatic or intrusive as the data would suggest. What I did notice was a lot of communication from Frog that while I would hope was not going un-noticed, was certainly not honored or even acknowledged. I also saw dominating behavior on the part of the adults. While I am certain it was done with Frog’s best interest at heart, it certainly would shake the trust and confidence of a small child whose world view is often confused and chaotic. I do not believe it is helpful, healthy or wise to take all of Frog’s control away. That in itself would cause enough anxiety to interfere with learning. (On a side note - I applaud the introduction of sensory calming and sensory input activities into the work of the general classroom. I would caution, however, these are tools not magic bullets. The wrong tool used at the wrong time or used excessively can make things worse not better. I got the feeling that Frog was to be squished on a regular basis whether he needed/wanted it or not. On one occasion, I saw a Para trying so hard to comply with Teacher's direction to make sure Frog got a good squish, she directed him to the mat and when he didn’t go, she brought him to the mat and made him lay down, and when he tried to crawl away, she pulled him back and squished him.) I saw examples of auditory and visual distractions interrupting Frog's motor planning leaving him floundering for what to do next preceding some of the incidence of these behaviors. And, some of the behaviors were perfectly typical fight or flight responses to unexpected or startling events. In any event, while I think they do interfere with his learning to a degree, to the extent they are communicative I don’t want to extinguish the behavior without substituting another way for him to say ‘NO! Stop that! I don’t want to do that!” He is vulnerable enough as it is. Extinguishing behaviors that are defiant, and seeking complete compliance and submission is too dangerous for him and will make it difficult for him to ever feel his has the right or ability to self advocate. Other 5 year olds (and 4, 3, 2, even 1 year olds) say NO all the time. It is ok and developmentally appropriate for him to be non compliant at times. Furthermore, extinguishing the behaviors without truly identifying their purpose and helping Frog find appropriate substitute behaviors may not give us the results we desire. He didn’t start biting his arm and pinching us until he was taught (at school) to cover his mouth with his hand when he started to scream. In my opinion, if the program he is in requires a level of compliance that does not allow him to say no – I need to put him a different program.
I cut the teacher off as she began to read her observations and concerns pointing out that these were not new behaviors and they were decreasing in an environment where he was listened to and validated. We had a long discussion about the differences between ABA and DIR which was educational for some of the staff members. Then I suggested that it was time to take a break from school and focus on communication. I got no argument from the team, and the Teacher, who started out defensive, seemed a little shocked and a little relieved. We all made nice and allowed everyone to save face. We planned a goodbye ritual for Frog complete with a photo memory book and a cupcake celebration. We told him that we were proud of how much he had grown and learned in Teacher's class and now he was ready to move on to adventure school with Mommy. We kept the IEP for now with a placement of "home school". That means we can still access the OT that we adore and the new SLP who we were so excited to work with at the begining of the year.
We have realized at home for a long time now, that
Frog learns faster and more naturally when he backs into an activity rather than trying to learn through direct instruction. I'm in the process of modifying the home school curriculum with the advice and guidance of the teacher who developed the program, to meet his specific learning style. She suggested that he may show strong resistance initially to anything he perceives as "instruction" and suggested we unschool for a little while. Today when we left our private SLP's office, the local para-transit bus was parked at the front door. Frog froze, panicked, sat down on the ground and looked at me with scared pleading eyes, vocalized distress, tensed his body and started rapid, shallow breathing. I talked him through it - "No, that is not your bus. We are going to get into our van and go home. The bus is going away and you are not going to ride the bus" He held it together, but could not move until the bus left. Riding the bus was always one of the highlights of the day. I see this as Frog's way of saying I like what we are doing and I don't want to go back to school. I feel the same way.
We did get school pictures back this week - and they are soooo good, I just have to share:
About this Talk
Sir Ken Robinson makes an entertaining (and profoundly moving) case for creating an education system that nurtures creativity, rather than undermining it. With ample anecdotes and witty asides, Robinson points out the many ways our schools fail to recognize -- much less cultivate -- the talents of many brilliant people. "We are educating people out of their creativity," Robinson says. The universality of his message is evidenced by its rampant popularity online. A typical review: "If you have not yet seen Sir Ken Robinson's TED talk, please stop whatever you're doing and watch it now."
Sunday, November 04, 2007
On a lighter note - here are some pictures of what the frog family has been up to in my absence:
Wednesday, August 15, 2007
We've been fortunate that Little Frog has always been a very healthy little guy. We've hidden a few nutritional supplements in the maple syrup on his waffle or the jelly on his sandwich and slipped the occasional 3mg of melatonin into his ice cream, but it is a rare occasion when we have to give him actual medicine. Tylenol is the most common followed by the occasional 10 day round of antibiotics. He always gets better after we administer these medications, but the thing is - rarely does enough of the medicine get into his system for me to believe it is having any real effect. I think his "recovery" is due more to the heightened sensory input he gets from the struggle to avoid the medicine or he has some amazing ability to absorb the stuff transdermaly.
I have a dear friend, another autism mom, who has taken a much more biomedical approach to Autism. She has two boys who at any given time are on a variety of meds and supplements given on a daily basis. She firmly believes that I should desensitise and use behavior modification to teach Little Frog to take his medication without the aid of dramatic hiding rituals. I agree, that when he actually needs medication, ie antibiotics, he is not getting them and the struggle is monumental. One of her sons has PICA issues and getting him to swallow things was not a big deal. Her other son was very resistant and she describes a three year process of behavior modification, reasoning, consistency, and heavy duty reward systems that have recently culminated in her son agreeing to take a new, foul tasting medicine without incident. I would love to be able to give Frog some Tylenol when he is hurting, or make sure the antibiotics actually got into his system, but his reaction to taking medication and to us pushing him are worrisome. I fear creating more problems than I solve.
Frog's inability to swallow things seems to be a sensory issue. His throat closes in an almost instinctive way. (I'm channeling Grandin now - correct bad behaviors, accommodate sensory issues). This time around, by day three, we had to chase him down and wrap him and his arms in a towel, but then he would open his mouth and let us put the syringe in - there was just nowhere for the meds to go. Even with him mouth clamped shut by us, the meds just pooled at the back of his throat. I don't think we want to completely undo this protective reflex, as it is what keeps him from swallowing the various rocks, dirt, rubber bands, toys he pushes around inside his mouth. It is also what keeps him from sucking in a lung full of water when he swims under water with his mouth open like a baleen whale.
We do continue to reason with him, and maybe I should work on that when we are not in crisis mode - daily vitamin in jam perhaps. To this point, the very act of "forcing" an issue with Frog, no mater how gently we do it, pushes him just over the edge and I don't know if he can continue to process the language adequately at that time to engage in "reasoning". Also, with the language issues, I don't know if my reasoning is addressing his actual concerns and is therefore valid or persuasive in his mind. I do think that if I could come up with a new preparation to replace the pink suspension, that would not require two teaspoons of liquid, I could make a killing! Spoonful of Stevia anyone?
Does anyone have suggestions, opinions, or experiences that might help me decide what my next course of action should be?
Friday, August 10, 2007
Food, glorious food!
We're anxious to try it.
Three banquets a day --
Our favourite diet!
The day I've been waiting for has finally arrived - I cooked one meal for my family of four and everyone ate! It was a quick fix dinner from the frozen food section to boot - 15 minutes from freezer to table. Not my favorite way to cook, but it beats prepping three separate meals every night.
Diva has been very good about trying new things over the last year, but Frog remained steadfast in his five dish diet (Ego waffles, PB&J sandwiches, Mac-n-Cheese, Chicken Nuggets and French Fries, and Turkey and Cheese Sub with lots of Olives). A few nights ago, something amazing happened. Frog flat out refused his PB&J sandwich at dinner time - pushed the plate away. Then he went after his Dad's spicy penne and shrimp. Dad held him off, warning him that it was hot and asking him what he wanted. Frog said
"Nu, Nu, Nu, Nu, Nu".
Since that night, Frog has eaten spaghetti with meatballs, Fettuccini Alfredo with chicken and broccoli, white rice (I thought of you Charlie) with Thai sweet and sour sauce, Gnocchi with tomato and cheese sauce, hamburger bun with ketchup (he left the burger behind), popcorn, and muffins. Last night I made homemade rice pilaf and a gourmet pork chop dish with a red wine, rosemary, and Dijon mustard pan juice reduction. Little Frog mostly tossed the rice around, but he did climb onto the counter after dinner and enjoyed the remaining pan juice reduction. Tonight - chicken vegetable stir-fry. I cut the vegetables and chicken really small for him and he ate most of them - even finished what Diva left behind. Diva even surprised us by asking for peas in the pod which I had left out of her serving because I though she only liked carrots and broccoli.
For a Frog Mom who loves to cook, this is happy news indeed!
Tuesday, August 07, 2007
I had such great expectations for this summer - jam packed with new adventures and learning experiences for the whole family and a specially designed summer home school for Little Frog. But, the best laid plans . . . I guess I should have checked with Little Frog before I got so wrapped up in the idea. I just have to keep reminding myself - "In his own time".
We've had our share of adventure and learning, just not in ways I intended. Diva has flourished in gymnastics and is reaching a level where the elements become quite nerve wracking for parents to watch. There have been play dates galore, but not the inclusive experiences I'd hoped to provide for Little Frog. And Frog's Dad has learned all about pool installation with a wonderful new 15 x 30 foot above ground pool to show for his efforts. Thanks to the heat pump and some stretches of nice weather, the water has remained in the upper 80's.
Little Frog's summer has been full of more misadventure than adventure. We started with some major dental work under general anesthesia which sent both frog parents into small bouts of panic attack - not only thinking about the procedure itself (7 crowns and one extraction), but the potential aftermath of completely changing Frog's mouth - his proprioceptive center. Frog did amazingly well and showed little impact from the changes. During his pre-operative check-up however, his doctor became concerned that his heart murmur seemed dramatically louder. After the dental work, our next appointment was with the pediatric cardiologist. More anxiety for mom and dad, as I was a child diagnosed with Paten ductus at the late age of 4 and required heart surgery to correct it. Fortunately, Frog's murmur turned out to be a standard Stills murmur - nothing to worry about.
The afternoon following his appointment with the cardiologist, Frog went to spend time with his grandma so Diva could entertain friends in the pool. While Frog played outside at grandma's, she noticed him wiping his foot in the grass and finally sitting down to look at the bottom of his foot. It is unusual for Frog to be sensitive enough to feel something on his foot. She wondered if he had a sliver. She got a quick look, but didn't see anything. I looked when he got home and didn't see anything. We had him soak his foot in the bath for the next couple of nights and he spent a lot of time in the pool. We still did not see anything on his foot and he was running and jumping without any apparent distress so we let it go. On Sunday evening, we noticed that Frog was walking flat footed. His teacher always insisted that he walk flat footed at school. At home, we remind him occasionally, but are not sticklers about it. I watched him walk around for an hour without going onto his toes. Then I watched him jump on his toes on his bed. Later I saw him walking on his heels. I figured he was just trying something new.
On Monday, Little Frog turned 5. It was a big day with a small evening celebration planned for the family. Late that morning, I heard a squeal from downstairs. I came down to find Frog sitting on the kitchen counter covered in extra strength dish washing detergent, mouth open in a silent scream, rubbing his eyes with soap covered hands. I grabbed him, threw him into the sink, got a good wrestler’s grip around his soapy body and arms, used my head to hold his head still and used the sprayer from our sink to rinse out his eyes with cold water while he writhed and screamed in fear. He was soaked, I was soaked, and the entire kitchen was soaked and slippery with dish soap. His eyes red and swollen with irritation and terror, I carried him upstairs to clean up and realized that he still seemed soapy. I called to Diva "let's get Little Frog to the swimming pool to rinse off, he likes the pool." I took him to the middle of our pool and let him go, as he likes to sink under the water. He was too traumatized for that. Although he does not know how to swim, he held his head above the water and paddled away from me as fast as he could making it all the way to the stairs without getting his face in the water. While I was impressed with his new "swimming" ability, it became clear that we would have to abandon the pool and go back to the sink for more eye rinsing. He enjoyed his party, the balloons, the presents and the brownies, but his eyes were still a little weepy.
On Tuesday, while we waited for his new big boy bed to be delivered, he found his way into the bathroom, took a drinking glass and smashed it in the toilet bowl. Smashing glass has become a new hobby for Little Frog. In the past month he has swiped glasses from the sink and smashed them in the rock pile where he likes to play. He has taken jars of spaghetti sauce from the pantry and dropped them onto the concrete walkway in front of the house. He has taken bottles of beer from the refrigerator and smashed them on the garage floor. The glass in the toilet bowl cut his hand as he dipped water out of the bowl with another glass and dumped it onto the bathroom floor and bedroom carpet. Upon discovering this latest event I quickly removed him from the bathroom and went on a frantic search for antibiotic cream, lotion, spray, all of which I have, none of which I could locate. I finally settled on a good soapy washing at the sink followed by an antibacterial hand wipe, with Little Frog screaming and crying about being restrained and forced to comply with the washing.
Wednesday, what had seemed to be a new found interest in walking on flat feet or his heels then progressed to a limp. By Wednesday evening he could hardly walk on his right foot and a large hard red bulge was appearing just behind his toes with a small white spot in the middle. Thursday morning, the white spot had grown considerably and he could not put any weight on the foot at all. He was not running a fever, and he ate his breakfast, but a trip to the doctor's office was in order just the same. We saw the young resident who diagnosed it as a boil that had formed around a splinter. As he lay on his stomach, I laid my body across him while she examined his foot and expressed a small amount of puss from the abscess for culture. She sent us home with instructions to soak his foot often, apply antibiotic cream, and watch for signs of improvement or worsening. We only saw worsening. While Little Frog loves water, by evening I had to coax him into putting the foot into the water. I told him that if he soaked his foot it would make it better so he wouldn't have to go back to the doctor's. Not a promise I should have made. I struggled to get Tylenol down him - a battle Little Frog views as assault. When morning finally came, the abscess was larger, the foot was red and I was fearful that one of the red marks I saw might be a sign that the infection had entered the bloodstream. I called the Doctor's office, but they were not open yet. Little Frog was in good spirits, not running a temperature, and was eating - but he tired easily. I thought about going to the local ER, but knew that by the time we got through the admitting paperwork, his doctor would be in - so we waited for the doctor instead.
When we got to the doctor's office, Little Frog threw a fit. He was frightened, but he was also mad - and why wouldn't he be? I was the one who told him that if he put his foot in the water he wouldn't have to come back here. While I stood holding him in the waiting area, he screamed and clawed at my face. Behind my sunglasses, I started to cry - not necessarily for his physical pain and fear, as heart wrenching as that was, but more for the idea that I was betraying him, albeit for his own good. The person he most trusted in the whole world to protect him was delivering him once again for a painful procedure, holding him down while he screamed. The procedure was over very quickly followed up by two shots and a 20 minute wait to make sure there was no reaction to the shots. Little Frog, as always, was resilient.
As we made our escape from the clinic, he was happy. He showed no sign of any resentment towards me (though he screamed when I told him we would have to come back tomorrow for a quick re-check). He came home, ate lunch, napped the afternoon away and woke happy, giggling, requesting hugs, snuggles, and tickles from all of us. He was obviously feeling a good deal of relief from the release of all that pressure that was building in his little foot. I, on the other hand, could not stop crying. I made it through the fairy picnic play date Diva had with her friend at our house, but every time I was alone I was crying. I had reached my limit for torturing my son for his own good. The next morning, Frog woke with some energy and quickly drained. When we got to the doctor's office for the recheck, Frog could not hold his head up. While we waited in the exam room, all he wanted to do was lie down. He mustered up a quick scream when the blister was again punctured and drained, then he was practically asleep. No fever, just wiped out.
By Sunday he was back to his old self. He was getting around just fine and running from us when it was time for antibiotics. Not only did he never loose his appetite, but he rejected all his usual favorites and insisted on trying new foods. He is now eating spaghetti with meatballs, fettuccini Alfredo, and white rice with sweet and sour sauce. Today he repeatedly signed and used his voice output system with some guidance to request chips, candy, water and more. He approximated spoken words (Mmm - more, Dee - candy, Yea - yes). He sat and listened to an ENKI story about dandelions. He spent 20 minutes with me exploring roses and rose petals - touching, smelling, biting, tearing, and tossing them. He listened when he was told "No. Stop climbing over the fence. Put your feet back on the ground." He opened his mouth for medicine (and then spit it all back out). He has started playing with different toys and looking at books. And tonight, just before bed, he lost his first tooth.
Once again, Little Frog reminds me that he needs to do and learn things his own way in his own time. I guess I should stop worrying so much and just enjoy the ride.
Friday, May 25, 2007
Last weekend was Recital weekend for Diva and her ballet class. The show was amazing as usual. Over 20 acts with dancers ranging from age 4 to adult. Diva was in the Wildflower act and I, as usual, was a backstage mom. I have a feeling that I will never see Diva perform from the from the audience, but I don't mind because it is so much fun to watch these little girls conquer their anxiety, pour their hearts into the show, and bask in the excitement of the performance. Diva was old enough to dance both the Saturday and Sunday shows this year and she and her class did a great job. Coming off this performance, she can't wait to go to dance camp this summer and wants to take Jazz as well as Ballet next year (so she can have two costumes at the recital :0).
With the same passion he has for water, Little Frog has a new obsession - Rocks. Everywhere he goes, Little Frog finds, inspects, mouths, drops, and collects rocks. The picture above is our front yard now affectionately referred to as the Rock Garden. We also find rocks in the living room, the playroom, the bathroom, our bed and the car. We are reminded of our first child - a tri-colored cocker spaniel named Chopin (named after both the composer, Frederic Chopin, and the author, Kate Chopin). She was an avid rock hound who never missed an opportunity to add to her rock collection. At least she broke the ice and gave us a good sense of humor about living in the stone age. Chopin was gone long before Little Frog was old enough to remember her. I think they would have been great friends.
Tuesday, May 15, 2007
Today, after the IEP meeting I told him that I had started working on a short yoga sequence with Little Frog: Mountain Pose, Forward Fold, Lung, Downward Dog, Cow Pose, Child's Pose, reverse the sequence back to Mountain Pose. Little Frog and I worked on imitating Mountain Pose, the beginning and the end of the sequence. Beyond that, I modeled the sequence over and over while Little Frog watched from his swing. Within six repetitions, he knew when the sequence ended and waited until I returned to Mountain Pose to request another push on the swing.
Little Frog's Physical Therapist said he had given it some thought and wanted me to add another pose to the sequence, one that would be challenging but not unfamiliar and would give Little Frog a sense of his body. He asked me to add Frog Pose - how appropriate!
Second Chakra Excercise - Frog Pose
1. Come into a squat, up on the yoes, pressing your heels together.
Have the knees bent and spread apart, and the buttocks resting on the heels, which are off the ground.
2. Place the fingertips on the floor between the spread knees.
3. Inhale and keep the fingertips on the ground. Lean into your hands and push up, straightening your legs. The buttocks will raise in the air, while the head goes down. Try to bring the nose as close to the knees as posssible.
4. Exhale, come back down, letting the buttocks strike the heels. The inhale and exhale should be powerful.
5. Start off with eleven frogs at a time, and build up to twenty-six, fifty-four, and eventuall one hundred and eight frogs.
Monday, May 14, 2007
Here in Western Washington we have a very special family who, 40 years ago, took some puppies to their son's special needs class. They quickly discovered that most of the children had never really been around animals. They invited the class to come to their family farm to see real animals up close. The kids had a wonderful time and some amazing connections were made. The Corey's decided to continue to offer their home for the field trip. Soon other schools heard about the day and asked if they could join in. Before long, the project had to be moved to the county fair grounds. The Corey's asked their friends and neighbors to pitch in and farmers from around the county showed up with their tractors, horses, bunnies, chickens, barbecues, and families to spend the day with special needs children.
Today was the 40th annual Corey's Special Day at the Farm. With the help of several service clubs, our special ed PTO raised the money to send 7 buses with 100 (pre-school to high school) Students and 60 Teachers, Paraeducators, Therapists and Parents on the 1.5 hour trip. Schools from 4 different counties are invited to participate. There were horseback and pony rides, hay rides, a petting zoo, tractors to climb on, a cowboy clown making balloon animals, llama's and other animals to pet, the army reserves were there to pose for pictures and let the kids climb all over their rig, a roping demonstration and class, musical acts, tee-shirts, pictures and a hot-dog lunch all free to every special needs child who attended.
The kids had a blast. Everyone participated to the level they felt comfortable with. Nobody noticed much when there was crying or tantrum or unusual behaviors. It was a very liberating public experience. Over the years, the volunteers have also come to love this event. Many have commented that working at Cory's Day has completely changed the way they look at disability.
This was Little Frog's first year to attend. He was not too sure about participating, and waiting in line was a little too much to ask. But he seemed to be taking it all in. He did ride a pony for about five seconds. The volunteer helped him get down and brought him back to his teacher. Later, when we asked him about riding the horse - he got the biggest smile on his face!
Thank You Corey Family - you have created quite a legacy.
Saturday, May 12, 2007
TOP 10 THINGS I LOVE ABOUT BEING A MOM
10. Being able to say “because I said so” with authority. You would think it would work with my employees too.
9. A good excuse for eating extra treats – someone has to finish that ice cream cone before it melts all over the mini van.
8. An easy out from awkward social situations, “I’d love to, but Diva’s ballet class, Little Frog’s therapy, need to be home to check the homework and read the bedtime stories….”
7. Checking homework and reading bedtime stories. The great feeling you and your child get when you explain a new concept so they understand and aren’t frustrated anymore. Getting to revisit your childhood friends – Good Night Moon, Winnie the Pooh, Laura Ingles Wilder, Where the Wild Things Are, Horton Hears a Who, Hop On Pop, The Mixed Up Files of Mrs. Basil E. Frankweiler, Anne of Green Gables, Little Women, Make Way for Ducklings, A Wrinkle in Time - all over again and experience them like the first time through your child’s eyes.
6. Playing – really playing like you did when you were a kid. I have Little Frog's Autism to thank for this also because play has become so important and I truly have license to let go and play.
5. Singing to and with a very forgiving audience.
4. watching them grow, mature, overcome developmental and social obstacles. I think I feel even more proud when they succeed (and sometimes just trying is success in and of itself) than when I succeed.
3. Perspective – being a mom shifts what I find important and/or necessary – and I like who I am all the better for it.
2. The Secret Mommy Handbook – I feel I understand my own mother much better now that I have passed the initiation. Now we can even share the secret handshake!
1. Unconditional Love – My love for my children is the closest I’ve come to experiencing unconditional love and I am in awe of its power.
Happy Mother's Day to Moms everywhere!
Sunday, April 29, 2007
Thursday, April 26, 2007
Be reminded that I vacuum everyday - these are just the shoes from yesterday! We don't call her Diva for nothing!
Diva Frog's Creation:
"Blue Flower No. 1"
By Diva Frog
Painting in Acrylic
Our Trip to the Zoo was wonderful even with extended car ride due to road work, missed ferry boats, and limited parking. The highlight was an up-close and personal experience Little Frog had with a peacock. Little Frog was in a stroller, eating (and dropping) goldfish crackers. The bird spotted the crackers and after realizing that Little Frog was not a threat - in fact didn't seem to be paying much attention at all, walked right up to the stroller to get a snack. Little Frog watched, but did not flinch or react in any way. The bird, being comfortable with this arraignment, stayed and ate crackers with Little Frog while everyone (except me of course) snapped pictures. When the crackers were gone, the bird turned on his heals to move on wafting his enormous tail feathers across Little Frog's face. Little Frog was a bit stunned but mostly he just enjoyed the sensation - no melt down. As the bird was leaving, a young NT boy was throwing crackers at it, trying to get it to come to him. The bird sensing too much attention picked-up speed in the other direction. The boy, not to be deterred, chased after the bird, trying to step on its tail feathers to make it stop. His mom chased after him saying "no, no, no" - it was a nice bit of role reversal for us! Diva Frog found a display on Thailand near the elephants and was thrilled to learn about spirit houses (having seen some at her favorite Thai restaurant and being unimpressed with mom's explanation). Little Frog loved the River Otter exhibit where you could look through the window and see both above the water and below the water at the same time. Over all it was a wonderful day.
Our trip to the beach was eye-opening. With Little Frog's water obsession, we are always wary about taking him near large bodies of water. On our last trip to the beach, he waded into the waves on a sunny but chilly March afternoon, fully clothed (in brand new shoes mind you) and stopped only when he was knocked down by a wave. Now wet from shoulders to toes, he stood back-up and hesitated a moment while he processed my pleas to come back to the beach. We were only planning on walking along the waterfront on the trail that day and being so close to home I did not have a change of clothes for him let alone myself should I have to go in after him. He took pity on me and came back on his own. For our spring break beach trip we choose a beach equally close to home, but on the far side of the protective hook that forms our harbor. We were right there with the bigger, wilder waves of the Straights of Juan DeFuca. I think he remembered how cold the water was last time and these waves made a lot more noise. This time he stayed at water's edge and ran up and down the beach, watching sea gulls and coast guard helicopters. He could make as much noise as he liked without being told to use his quiet voice. He found a variety of rocks and gravel of different grades and had a ball sorting and sifting. The entire beach is on the far side of giant rocks placed there to protect the hook from erosion. It was quite and adventure getting all three of us over the big rocks. But, once on the other side, there were no worries about Little Frog running away or into traffic. He enjoyed the freedom, I enjoyed the freedom, and Diva enjoyed having more of mom's attention as she and I searched for colorful rocks to put in Grandpa's rock polisher.
The Art Walk was another surprise. We have a small but well respected fine arts center in town. The exhibits change regularly, but it seemed a little soon to take Little Frog who would be much more impressed with the tonal quality and sound dynamics of the building when he was screaming in it, than the art on display. Frog's Dad happened to have the center's director on his radio talk show last month and I learned about the outdoor exhibit. The residence that became the art center sits on about 5 acres. A local savings and loan association funded a five acre art installation with an ever shifting and changing display along the trails through the woods. On our first visit, Little Frog was intrigued and wanted to touch, taste, and feel many of the pieces. About 15 minutes into our walk he had reached overload and we had to leave. That night Diva Frog asked if we could go back and see more. I asked if she wanted to go for several short visits with Little Frog, or go by herself with just mom or dad. She said she would rather go with Little Frog. We went back the next day and Little Frog stayed with us for the whole hour we spent wandering around the exhibits. He especially liked the bouncing rocks (large cobbles mounted on rebar that were cemented into the ground), the Temple Bells, and a musical bench he could sit on while he made sounds and feel the vibrations. Diva Frog enjoyed the thrill of discovering something new everywhere she looked.
Little Frog went shopping with us at a local nursery for our salad pot supplies. It was near the end of the day and he did really well. He didn't start with the loud screams until we were on our way to the car. He did pick out several varieties of lettuce for me. When we got home, he was too tired to plant. So Diva and I finished that project on our own. Little Frog has become our official waterer - carrying cup after cup of water from our fountain to our plants.
We all enjoyed the music and the dancing. The following week, Diva and I were back in Seattle with two of her friends to see an American Girl play. There was a drumming jam session going on out on the lawn beside the big fountain. The girls were really enjoying the music and the rhythm along with the big water show. The fountain is designed for playing in, but we didn't bring any extra clothes. I think that may be our next destination with Little Frog. At the end of the week he was worn out. But he also seems more eager to engage with us and frequently takes me to the car - I take that as "I want to go mom!"
Wednesday, April 25, 2007
When Little Frog was 18 months old, he babbled up a storm. We heard lots of mamamamamamam, and dadadadadada, so we assumed, along with all of the professionals who worked with him that speech was right around the corner. He could and still does make every phoneme used in spoken English along with many that are heard only in other languages and cultures (including clicks and whistles). As he grew, we began to hear phrasing and intonation in his babble. At 29 months, he came down stairs and proclaimed triumphantly "Deedle, Deedle, DEE!" with an expectant look like we should all know exactly what he was talking about. As he continued to grow we heard words - clear, specific and appropriate that would come out of the blue and disappear just as quickly - Yellow, Let's go, OK, It's broken, baby, Goodbye. Then there were attempts at words that he would speak very softly under his breath as if he were afraid of what might or might not happen - cookie, water, mom, go, more.
We tried gestural communication which would work beautifully for something he really desired - another push on the swing, another ride in the wheel barrel. He would be so excited about the power of his new gesture he would quickly co-opt it so say everything. Soon we were led to the kitchen by the hand and presented with a quick "clap, clap" and an expectant look. When we would teach another gesture he would take to it just as readily then quickly stop using the first gesture in favor of the new one.
We tried diligently to establish PECS (Picture Exchange Communication System). I traveled to another state for a two day training, then volunteered in the classroom to get him going. He stalled out when he had to actually look at the pictures and pick the correct item. He could do it only in a formal trial setting where he was working with the same 3 to 5 pictures. I firmly believe that he does not "see" the pictures as representations of a specific object, but learned quickly in the trial setting that the bluest card got him chips, and the card with no color got him water, and the card with three things got him a toy, etc.
After our visit to the HANDLE Institute, he started saying parts of words - cu, or kie for cookie, wa, or atter for water, ack or ker for cracker, kie for blankie, mo for more. These were not consistent but they were more communicative than his previous speech attempts. He was diagnosed with verbal appraxia due to his motor planning problems and we started with PROMPT. He took to the physical manipulations and oral motor exercises used by his speech therapist right away and we began to hear some progress at speech therapy - But, still not much more at home. We decided that in addition to working on production of specific sounds, he needed more work in differentiation of his whole body. After a DIR conference last fall, I added ABLC (affect based language curriculum) to his home program. We have not seen a lot more spoken language, but he is doing better with other aspects of motor planing and auditory processing.
Our next attempt was Sign Language (ASL). As with the gestures, he could pick-up and use one or two signs effectively, but seemed to loose them when he learned a new sign. And he was quick to expand the meaning of various signs. At school they were hopeful that by applying verbal behavior and error less learning principals, they would be able to teach him to sign with a speed method. I was doubtful that an apraxic child with sever motor planning issues would benefit from speed anything. They were able to teach him one sign over the last 7 months.
In an attempt to test his desire and aptitude for a voice output system, I bought a GO-TALK 4. A relatively inexpensive device that allows you to pre-record up to 20 words or phrases on four buttons with 5 levels. It also has two buttons that remain constant no matter what level you are on. I recorded a lot of his favorite food choices, his biggest motivator, and placed the device next to him in the car. Being strapped into his car seat for a two hour ride, it took him less than five minutes to realize that I would become a human food dispenser if he pushed the buttons. When we got home, I hung the device in the kitchen. "Cookie, NO" he kept pushing. "You don't want a cookie?" we'd ask, "What do you want?". "Cookie, NO" he would push again. It was frog's Dad, who finally figured it out. "Oh, you don't have a cookie. Would you like a cookie?" "Yes" he pushed. Later, when he pushed cookie repeatedly, I gave him a girl scout shortbread cookie. He took it, looked at both sides of it, and put it on the counter. "Candy, Cookie" he pushed - "Candy cookie?" I asked. "Candy, Cookie" he pushed. After thinking a minute, I remembered that we got Diva Frog a box of All Abouts - short bread cookies with chocolate on the back. One afternoon, about a month after the device was placed in the kitchen, I was cleaning-out the refrigerator. I had already told Little Frog that he needed to stay out of the kitchen until I was done. He quietly strolled in and watched me for a minute. Then he went to his device and pressed "Candy". "No Candy" I said, "I'm busy and it is too close to dinner." "Candy" he pressed again. "No Candy" I said again. "Yes, Candy" he pressed. "No. Mommy said No Candy. Go play with Daddy." "Yes. Yes Candy." "NO CANDY!" I said yet again. I was frustrated and elated at the same time - this was our first verbal argument! The funniest part was the look on Daddy Frog's face when he came in to find out what was going on. This device requires you to record the words. I had done the recording myself - to daddy Frog, sitting in the living room, it sounded like I was arguing with myself!
As Little Frog approaches his fifth birthday and nears the end of the autism preschool, we know that functional communication is the number one goal for him. His speech therapist rented a sophisticated voice output communication device from Prentke Romich that he has been experimenting with over his last 5 appointments. Even with limited access, here is what he has told her:
I want eat french fry.
I want eat chips.
I want to drink water.
I want to play with ball I.
(He entered this last sentence while they were playing with a ball together and she kept telling him "my turn" and snatching the ball from the air when he was dropping it from one of his hands above his head to his other hand down by his waist - he wanted to play by himself).
I downloaded a simulation of the device so I could learn how to use it. In a cheesy attempt to win my husband over and convince him this was not just another expensive tool that would end-up unused in the corner, I typed "I love my dad" and showed Little Frog how to click the mouse to make it play. When Frog's dad came in I helped Little Frog click. "I love my dad." "I love you too," said dad. Then to me Frog's dad said "yeah, but you put that in there not him." Little frog, in his own off handed, not looking, seems to be a coincidence but could it really be way - moved the mouse and clicked twice "I love my dad, maybe." said the device.
We've learned about our son's receptive language skills, frustrations and sense of humor with just a tease of these systems. I can't wait to find out what he will do with one of his own.