Thursday, December 14, 2006
So I stood in front of the refrigerator, pondering...do I give him some yogurt to help his intestines while he's on this medicine, or do I let him suffer through more discomfort so he can stay on this diet?
Casein (dairy) can be out of the body/digestive system in 3 days.
Decision made. So we're off the diet for a while.
Then the next night, Rob said "hey, listen to him!" T was alone downstairs playing with the jack-in-the-box and SINGING THE SONG along with the music. Not all the words were perfect, but who cares - our little boy was singing!
Going to the doctor has been a huge drama since very early on. I always hated going to the doctor too, but at least I could understand the words my mother would say to me about where we were going and why. That didn't stop me from screaming at the sight of the nurse's red cape! (Can you imagine - nurses back then in white uniforms and red capes! How cute.) So clearly T has inherited his intense dislike of doctor's offices from me. hah. But I digress.
He's been getting better about office visits, and panic mode sets in later in the process the older he gets. He still gets pretty agitated when our doctor, the lovely, gentle combination of Mr. Rogers and Ichabod Crane, walks in the room. But the doctor is so very patient and just talks with him until he calms down a bit. (Another aside - a doctor who isn't in a rush! We adore this man.)
I've been attempting to get T to say "Hi" to people when we meet them, a socially appropriate thing for a child to do.
I said: "Say hi, doctor."
T said: "Hi Santa."
Mind you, this doctor does not look like Santa at all. No red on whatsoever, and clearly if he's part Ichabod Crane, he's not shaped like Santa. But throughout the exam, he kept referring to the doctor as Santa, and thankfully the doctor was quite amuzed. And thinking that the doctor is Santa as opposed to some devil coming to hurt him is much better for all involved!
Thursday, December 07, 2006
Here is how it usually goes:
Dad (or Mom): "Goodnight, T."
T: "Goodnight T." (repeating what he hears)
Dad (or Mom): "Goodnight T. Say Goodnight Daddy."
T: "Goodnight Daddy."
But tonight, when I finished his bedtime song, he looked right at me and said "Goodnight Mama."
5 1/2 years old. My birthday is in a few days. I just got my best birthday present EVER.
Wednesday, December 06, 2006
The GF/CF diet is part of the world of biomedical treatments available for people with autism. The theory is that these kids, due to their compromised digestion, have something called a leaky gut. While digesting food, esp. gluten & casein, these proteins leak out of the intestines and into the bloodstream, where they eventually end up in the brain. The brain reacts like it's on drugs - a narcotic effect. Some kids have major digestion troubles and allergies, and are constantly sick or have loose stools and are grumpy, and might not even sleep through the night because of acid reflux. Many of these kids crave these foods and eat them exclusively, even though they are so damaging to their bodies. This is the theory, in a nutshell.
Rob & I have dug in our heels about going down this road for T because he is a happy guy with normal bowel movements and who eats a good, balanced diet (well, practically no veggies, but what 5 year old likes veggies? Okay, if your 5 year old does, that's amazing and fantastic. I don't want to hear about it!) He sleeps through the night and just doesn't fit the usual description of the kids who really benefit from this diet.
But what about the narcotic effect? Some kids present no outward symptoms of these food "allergies", but just act stoned/spacy all the time. Oh geez.
If I'm honest, I must also admit that I really don't want to do this diet. No wheat? There goes his sandwiches, cookies, Goldfish crackers, pretzels, pancakes, waffles...basically all his favorite foods. No dairy? Okay, that's a little easier, but he really enjoys the one cup of milk he has a day, loves string cheese and mows through macaroni & cheese like he's me (I STILL love Kraft mac & cheese!) There are substitutes for most of these items at our local health food stores, but great scott are they expensive.
So why am I writing about it? I am a believer in messages. A friend with an autistic son has been doing this diet for awhile for him, and she says she sees great improvement in his behaviors. My sister is having lots of trouble with food and digesting lately and had some testing done - the result: she's on a GF/CF diet, and has discovered some pretty major food allergies in addition. And yet another new friend has her son on the diet, and believes firmly that it has helped him - and I must admit, her son is doing amazingly well. So when she told me that the doctor that is the expert on these biomedical treatments up in the Big City north of here was having a parent information night - and that we should go - I looked to Heaven and said "All RIGHT already! I'll go. Grr."
I just don't want to leave any stone unturned.
I also know that every medical treatment is experimental at first. And as the treatments are done, there is only anecdotal evidence at first. This is how it goes. There is research being done, but the medical community is not of one voice on these treatments yet.
So Rob & I went to the parent information night last week. We went being skeptical, to say the least. But this woman (an M.D., sorry all you D.O.s out there) said the magic words for us: "This is NOT a cure. But this may help your child." And: "I don't want you to leave your pediatician. I will work with your pediatician on a consulting basis." Further: she doesn't have her own line of products to sell. In fact, she learned about these treatments when her daughter, who has Asberger's Syndrome, wasn't responding to traditional therapies. So she started researching alternative treatments, and long story short, she's a believer because it worked for her daughter. She now commits one day/week in her practice to autism because she believes so strongly in these treatments - and the more kids she treats, the more she sees that it works.
So, T is worth it. If it may help him, we owe it to him to give it a try. So we will.
What I'm finding interesting is my grieving for his diet, and what he'll miss! I would just be heartbroken if I missed all the Christmas cookies and dilectable treats this season. But how silly is that? I'm really not sure that he remembers the cookies from last year, and I could make him some of his own very special cookies made from almond flour. But isn't that funny? I'm projecting my desire for those cookies on him, and I'm considering delaying this just so he can have some sugar cookies!
Another lesson I'm learning again & again: do what's best for him, not what I would want for myself. What's best for him usually isn't something I would chose for myself.
So I've posted previously about the extreme challenge of potty training, especially with bowel movements. I have an update.
T has had the unfortunate luck of having an intestinal virus this week which has lasted 4 days. Let's just say that over the last several days, he's had many more opportunities a day to go to the toilet than usual. I didn't want to press it too much - obviously, if you have diarrhea for 4 days, you aren't feeling good or wanting to be messed with! But yesterday, I could just tell that he was about to go again. I sat him on the toilet, and he didn't argue. About two minutes later, he discovered the beauty of pooping right into the toilet - for the first time EVER!!! 5 1/2 years. My joy and relief were tempered by seeing just how miserable he felt, but nonetheless, he did it! I didn't do a happy dance, just hugged him and told him how wonderful he is and how proud I was...and wasn't it nice not to have to be so messy this time?
We haven't replicated this success yet, but I now know he CAN do it - and more importantly, HE knows he can do it.
More to come. Updates, that is!
It was fascinating to watch the procedure, and moving to hear the representatives - and there were several - stand up and talk about numbers of children effected (another statistic I heard today: more children are diagnosed with autism each year now than with cancer, AIDS & diabetes COMBINED.) I heard the number 1 in 166 too many times, and tears came to my eyes.
Finally some good news - it passed!!! All the phone calls to Washington must have paid off. I'm still keeping them all on my cell phone's speed dial, though.
Sunday, December 03, 2006
Skip ahead to the Tuesday before Thanksgiving. I get a phone call from this amazing teacher to confess that T hasn't been getting the speech services he's legally required to get, that she's been less than forthcoming about this fact when I've asked about it, that she feels that she's been forced to run an illegal classroom because of it, and that this is the last straw for her after 10 years of struggles with the administration and...she's resigned.
I actually felt the ground move under my feet when she said those words.
I won't bore you with the details, which are many. We have only heard the teacher's side of the story, and it is clear that there is more, much more to this whole situation. The night that this all happened I said to Rob that this may be the beginning of something really, really big with the school district - just the tip of the iceberg. I will keep Chesterley's Child posted on how this thing plays out. But Rob & I have a decision to make: do we keep T in this classroom with an unknown entity coming in to teach in January, or do we pull him for the rest of this school year and send him to the classroom this teacher intends to have set up in time, keeping him with the teacher who has done magical things with him and who may be his best hope for being ready for Kindergarten in the fall?
In the meantime, Rob & I along with the other parents have been to the school board to tell them about the lack of speech services. Somehow I became the spokesperson for all of us, and addressed the board myself. I am glad to report that two members replied to me immediately after I spoke, both voicing their concern about this and their support for our children getting everything they need. One had a child who received speech services and was very concerned that our children weren't receiving them. Several others approached me after the meeting to thank me for speaking that night (!) and asked me to come back and keep them posted. I'm feeling like we have the school board behind us on this, and we certainly have the law on our side. So here we go.
I just didn't think we'd have to deal with all of this in preschool. Shades of challenges to come. Better add "expert in special education law" to my list of roles I play.
The day after Thanksgiving, Rob & his mom & I took T downtown to the lighting of the holiday tree and all the lights on the square. I love this part of living in Small College Town (there really is a town square with a courthouse in the middle! How Americana can you get? I love it!) We all had a lovely time, T included. He did very well with the crowds and the cheering, and especially liked seeing the tree inside the courthouse all lit up and sparkle-y. Lots of jumping and vocalizing over that!Pictures from the weekend, if you'd like to see more (pictures courtesy of Rob's mom - thank you!) http://picasaweb.google.com/chesterley/Thanx2006
Next we tried to go see another indoor display, but the place was jammed because SANTA had arrived. No way would we be able to wait in that crowd. So we went back the next day, not thinking that we'd visit Santa - just to see the winter wonderland set up inside.
But sure enough, there he was, with no crowds around him: Santa himself, just waiting for a little one to stop by. I really didn't know what T would think of Santa, but lo and behold, there he was, walking right up to Santa's little gazebo as if this were standard practice.
This was the perfect Santa. Not too loud or boisterous, just really kind and patient and lovely. I told T to say "Hi Santa" and he did - both words! Usually we have to prompt both words, i.e. Mom: "Say 'hi Santa'"; T: "Hi"; Mom: "Santa"; T: "Santa." Santa had jingle bell bracelets on which T loved, and before long, he was snuggling up to Santa like an old friend (with occasional breaks to jump around and look at the lights.) Next thing I know, Santa says, "Let's get a picture. This one's on me." And Thomas leans right into him, puts his head on his shoulder, and voila, we have a picture with Santa. After some stunned protesting against the free picture, Santa said "I do this for my special kids" with a smile in his eye.
I think it was about 10 minutes before I could even think of speaking again without sobbing over this small act of kindness on his part - and over T's wonderful moment. Thank you, Santa - for this God moment.