Wednesday, August 15, 2007

Where is Mary Poppins when you need her?

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


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

Little Frog in his own time

I have spent this summer cleaning. The usual household stuff; the regular but unusual messes Little Frog makes; and a major - dig to the back of the closets - read the expiration dates - when did we last use this! - whole house cleaning. I even had a commercial dumpster delivered to our house and we almost managed to fill it. We are feeling a bit lighter and breathing a bit eaisier. The whole family has a new found interest in tidiness - including Little Frog. Although he has not jumped on the "put it away" bandwagon, he loves spending time in his bedroom and playroom where there is a place for everything and everything is in it’s place. While I was sorting through the toys and books, I came across a story called "Ruby in Her Own Time" about a baby duck who develops a little more slowly than her peers, but flies the farthest in the end. It reminded me of Little Frog.

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.