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.
Saturday, November 11, 2006
He was the author of the Combating Autism Act and is one of autism's greatest supporters in Congress. He's fought for federal funding and clearly is behind increasing research being done and not wasting any more time. And he wasn't re-elected. It was nice to have a Republican on our side, as another Republican was holding up passage of this bill in the House. It wasn't a Red vs. Blue thing.
So I lift my glass to Sen. Rick Santorum and thank him for all his hard work and support. He will be missed. And I pray that someone will take up the fight and get this legislation passed quickly. One in 166 births today. One in about 120 boys born.
Several posts back, I said that I would talk about T's potty training saga. This has been an ongoing source of stress, confusion, and until quite recently, despair for me. T has been able to "tinkle" (I know, only mommies use that word) in the toilet for at least a year now - almost always prompted - he rarely requests to go - but he can do it and that is a relief and a major milestone.
Potty training is a major issue for many kids with autism. T's challenge is exascerbated by his almost complete inability to imitate. Echoing language - no problem. But he does not learn a new task by simply watching another person do something. It doesn't occur to him. This is why I was so excited about The Itsy Bitsy Spider several posts back. (This is THE major skill area we are tackling with his Verbal Behavior program.) Another thing: kids with autism don't receive messages the body sends the brain in the same way as you or I. So they may not realize that they have to go, or even realize that they've already gone. Layer on top of that his struggles with understanding language (although he is making MAJOR, major progress because of the VB program), and we've got a challenge to say the least.
Okay, so let's say you have a child who doesn't understand language too well, that doesn't imitate the actions of others and whose brain doesn't always get the message that "I have to poop." Where on earth do you begin?
Start a potty schedule. Okay. Track bowel movements for three weeks, then find the pattern and time he usually goes and take him to the toilet and sit him there until he goes. Check.
Mission NOT accomplished. About 60% of the time, he'll go between 4:00 & 5:30. Right when I'm making dinner and can't watch him like a hawk. I try, but little luck. What about the other 40% of the time? 2:30 p.m. one day. 11:00 a.m. another. 3:15 p.m. (while on the bus) THEN again at 7:30 p.m. 4:00 p.m. Pattern? Hmm.
But wait, it gets better. Add to this his panic over sitting on the toilet with or without the potty seat. Yep, even on the days I did catch him about to go, he'd scream when I'd approach him and resist & pull my hair on the way to the bathroom. Force him to sit? All you parents out there: remember the "banana" position your kid would go into when he/she didn't want to sit in their car seat? Yep - that was T. Needless to say, we haven't pooped in the toilet yet. And the stress over all this was making him averse to even going into the bathroom at all! No, no - we can't regress, please.
I asked our Occupational Therapist. Nothing helpful beyond what I already had been trying. I called our children's therapy clinic to see if ANYONE had any help to offer, any different ideas. Nope. Is there anyone who knows how to potty train autistic children?
Books. Okay. Still pretty basic. Websites & blogs...ah, there are some interesting ideas (have your child sit on the toilet with a full diaper then cut their diaper open so the poop falls in - interesting, but with a writhing child? Maybe not.)
THEN...our Verbal Behavior consultant came for her weekly visit. She asks, in passing at the end of a session, how my week has been. I sigh, try to keep a good face on, but she sees through it. I'm at my wit's end and am in despair. We try to take T to the bathroom, and she sees what no one else has - and no one else seems to believe - that he now freaks out about going to the bathroom. Then she suggests what will be a miracle: how about putting something in the bathroom that he absolutely cannot resist? How about giving it to him ONLY when he's sitting on the toilet?
Out comes the portable DVD player. Out comes a Baby Einstein DVD. And in a few minutes, T is not only in the bathroom but happily sitting on the toilet. "I have families who have set up an entire entertainment system in their bathrooms for just this reason," she says with a smile.
So here's the plan: several times a day, T gets to watch a few minutes of Baby Einstein while he sits. We slowly increase the amount of time so he's completely comfortable. We try to find a pattern again, a usual time of day, and try again. She said that one kid took a year to finally poop in the toilet, but he did, and so will T - eventually.
Relieved sigh. So now I have a plan. T will happily go to the bathroom and tinkle and sit on the toilet. Now I just have to be patient and positive. It will happen. I look forward to the day we don't have to be washing poopy underpants anymore. It's been 5 years and 3 months. I'm ready. Now I just need to wait for him to be ready! Any time, T, any time.
Saturday, November 04, 2006
Sunday, October 22, 2006
T rode his newest horse for the Fun Show, and he did really well. In fact, all the extra people didn't seem to phase him at all once he was on that horse. He rode like the little pro he already is and grinned and laughed when he got to trot. Rob took pictures - if you are interested, here is the link: http://picasaweb.google.com/chesterley/Pals_fun_ride You can even see his first medal.
So what does this look like? How does it work? The first step was finding a consultant. She comes from Indy once a week to train me, our team of VB therapists, set up and maintain the program. If we do this as prescribed, T should have 25-40 hours/week of this therapy. We'll see if we get it up to that. Last week, my big task was to go through the ABBLS (the Assessment of Basic Language and Learning Skills): 26 categories of skill sets (visual performance, imitation, requests, labelling, etc.) with 10-52 tasks each - assessing T. Whew. The ABBLS assessment clearly shows us which tasks he has not mastered yet, and we use these tasks as the basis for his weekly program.
Teaching the tasks is done by breaking them down into small steps and rewarding each step completed successfully. We're doing this to help with toilet training - another post for another day. Rewards can be food, use of a toy for a few seconds, a video or music for a few seconds, or even tickles or praise.
It's a huge undertaking, and I'm exhausted from the week. Thomas, however, is already really responding to the techniques, and I'm thrilled and filled with hope for what it can do for him. I'll post soon about the potty training - that will give a clear example of how this works (even though potty training isn't verbal, the technique can still be used.)
Sunday, October 15, 2006
Tuesday, October 10, 2006
In a slightly nutty moment, I danced along with one of the Teletubby dances in the kitchen the other day while T ate his snack. Usually nothing can avert his attention from the screen when the Teletubbies are on, but he realized I was doing something silly and watched. The look of absolute delight and amazement he had was worth any silliness or embarassment I felt for dancing with the Teletubbies. He grinned and watched me, then looked at the TV (Yep, by gosh, she's doing what they're doing!) and looked back again - another little connection, another little magical moment.
Friday, October 06, 2006
At 5, he's already a ladies' man.
I was disappointed by their decision, but in a way I do understand. It still bugs me that they said no, and thankfully Rob was home for lunch today and we processed this together. Left to my own devices, I over-analyze, dramatize, and can blow things out of proportion. (Being an opera singer was a good fit for awhile, after all.)
At one point, Rob (who was also bummed that they said no) said that it probably wasn't personal, and that we shouldn't take it personally - that they are doing their job (no more, no less) and they were probably just making sure that they weren't getting too personally involved. Yes, this is true. But as I thought about this, I said "But I WANT it to be personal!" I want people who work with T to care about him and love him so much that they will take time out of their lives to help his life flourish. I want people who are passionate about him because working with him is not for the faint-hearted, and neither is planning for and building his future.
We are spoiled - so many of the people who do work with him absolutely love him. Case in point: A former SLP (Speech & Language Pathologist) came over after school this week for a visit because he kept saying her name over and over - I emailed her to let her know, and she was here, on the floor playing with him ON HER OWN TIME within 48 hours. These are the people I want working with him. Do I expect too much? Perhaps so, but isn't that what I have to do for T? Expect the unexpected, aim higher than I think possible?
Okay, take a deep breath. They want to know about the Circle and be involved, even if it is only by phone & email. I can also understand having to say no to some things. I'm having to do a lot of that myself. But I'm still disappointed, darn it.
Tuesday, October 03, 2006
We drove there the day before and spent the night at a hotel nearby. Our appointment was at 8:30 the next morning, and we didn't want to have to worry about finding the place after making the long drive, let alone have T go through that entire day on the Dramamine he needs whenever we go more than 20 minutes in the car. We wanted him to be at his best even though we were in a new place, in a new room with new people. Not the best scenario for these kiddos.
The procedure took the whole day. It was professional & thorough, and well done - many people spent time with us and with T, from a pediatrician to a child psychologist and speech therapist. They observed, asked questions, and midway through the afternoon broke the news to us that we expected. I don't remember the exact words, but it was something close to "The best way to explain your son's behaviors and challenges is to say that it is autism." Words were spoken after that, but I do not remember them. They were kind and supportive - that I know - and I think it was recommendations for what to do next. I recall several reactions: relief that we finally knew, feeling like I was kicked in the stomach, numb, suspended in time...and all the while I sat there with Rob pretending to listen. After a few minutes, the child psychologist took a moment, looked at us and gently said, "So, how are you with this?" I said "Okay" and then burst into tears. I cried hard for a minute or so, with Rob rubbing my back and the psychologist giving us a moment, then I stopped, dried my tears, ceased the sobbing and said, "Okay, what do we do now?"
On the drive home, we called our family. They were all awaiting the news, and all were true to their loving, supportive selves. We are blessed with a family that has supported us all the way, sharing our concerns, loving us and not undermining or doubting. This is a huge blessing.
It took us about 2 months to do anything at all with the news. It was all we could do to just keep moving forward, let alone act on any of the recommendations. But by late December, we had met with a local child psychologist who specializes in autism and we had requested a reconvening of T's case conference at school to get him into a different preschool. It took a while, but we hit the ground running.
My challenge over the next several months was feeling like I was never doing enough. I'm a rule follower. I like checklists. I like following guidelines. I mean, I'm even a classical musician, for crying out loud - I bring to life what someone has already written down. I do not do jazz or improvise. Period. But here's the deal: there is no one way to do this. No right way. Each child with autism is slightly different, and each needs his/her own combination of treatments, therapies, educational practices, and even diets or nutritional accomodations. We have had to become instant experts in a field that is exploding with research and new treatments, and I've spent many months feeling completely inadequate, filled with self-doubt, and thinking that I'm not doing enough.
Today, I can honestly say that I feel exceedingly good about what all we have set up for T. It has been a long road, and we have just begun. Just a few days ago I learned of another therapy that sounds like a great fit for him. It never ends. But at least we are on top of it now, and T continues to amaze us with new wonderful things everyday. Tonight at 10 minutes before bedtime, he took the potty and bathtime PECS pictures off the bathroom door and handed them to me for the first time, telling me that he needed to go potty and wanted a bath, too. Brilliant child. Something new everyday. I am filled with wonder, amazement and love.
Sunday, October 01, 2006
Friday, September 29, 2006
Our local Y has been such an amazing resource and a huge blessing. This fall we began adapted swimming lessons - swim time for children with special needs. Teacher/student ratio is 1:1 which is, of course, excellent. He has always loved the water, whether it is in a pool, the ocean, a lake, or swirling around in the toilet! This can be a mixed blessing, so I wanted to make sure that he learned to respect water - it can be fun but a danger, too (not to be too dramatic, but I hear the leading cause of death in children with autism is accidental drowning.) I'd love for him to learn to tread water and eventually swim.
It took awhile for him to be willing to leave the stairs of the pool in the shallow end, but now he goes right in. He laughs and smiles the entire time, while his teacher/volunteer pulls him around the water floating with a "noodle" or "bubbles", trying to avoid him jumping on her legs or knees the entire time. He comes home happy & tired. Any camp counselor knows this is the best way for a kid to end their day!
Another benefit: I get a little theraputic time myself. All the mommies sit in chairs by the side of the pool and talk, savoring a half hour when we don't have to be on constant alert, and this is proving to be one of my favorite 30 minute spans of my week. The children in this class have all manner of challenges and ability levels, and frankly, even though our present & future are filled with unknowns and endless therapies, at least T is a healthy boy. His condition is not life-threatening; he faces no major surgeries or dangerous health conditions. What's so great about this time is that these moms GET IT - they know what it's like to have a child with a disability and how that effects your life and changes you. They inspire and motivate me. These women have become instant trusted friends even though I've only spent two lesson times with them.
Wednesday, September 27, 2006
A favorite pastor of mine recommended looking for - and savoring - God Moments. They happen everyday - even several times a day - if you pay attention. This was definately my top God Moment today.
I have two reasons, perhaps three, for this blog. One is to keep grandparents, aunts, uncles, and all relatives and friends posted on our son's activities - and mine! Another perhaps equally important reason is to have a place where I can write down all of his new skills, fun and/or funny things he did that day, or even when we had a tough time. It's difficult to keep everyone posted on these things. But even more importantly, he's doing so many new things lately that I want to remember them, especially when I might be feeling blue or frustrated - I want to be able to look back and see just how much progress he's making.
The last reason: to share my reactions, thoughts & feelings, joys and grief, struggles and triumphs. Raising a son with autism is the hardest thing I have ever, ever had to do and it will also be the longest. But it has also been filled with joy - over the big and small strides that he has made.
So this is the first posting. I'm sure I'll add pictures and have fun with the layout of this thing. Welcome.