Today we had another first. T & I were in the kitchen; I was washing dishes and he was in his usual place these days, hovering over the fan of the humidifier, rubbing his fingers over the protective grating, grinding his teeth and grunting at it. This is typical behavior for him, such an everyday occurrence that he will sometimes do this for minutes without my noticing it. But something happened today when he stood up – I heard the unmistakable sound of a head hitting something. I turned around and saw T standing there, his little face turning red and pouty and concerned while he held his head. Clearly, he was in some pain. Then, remarkably, after I said “Oh, did you hit your head, honey?” he walked over to me, put his head against my tummy and leaned into me.
He wanted a hug. He wanted to be consoled.
I stood there, holding him against me, suspended between the heartache a mom feels when her child is hurting, and the sheer, almost tearful delight I felt over his coming to me for comfort.
I’m sorry he bumped his head, but I have had a very warm feeling all afternoon since I was able to console my son today.
Thursday, February 15, 2007
The Diet, Biomedical updates & reactions
We’ve now had T on a GFCF (Gluten Free, Casein Free) diet for 6 weeks. We’ve also started him on the incredible journey of biomedical intervention since our visit with the DAN! doc last month. Test results have come back – not all, but some – and he is currently on a prescription for yeast overgrowth in the intestine, another prescription for a bacterial infection, and a third for iodine deficiency. Then there are vitamins and supplements: Super Nu-thera, DMG, zinc, vitamin C, cod liver oil (that one hasn’t gone over too well), probiotics, and soon we’ll add digestive enzymes and something called L-Carnitine to help with attention. It feels like my entire day is giving T some syringe full of liquid meds or applesauce mixed with supplements. He’s such a trooper about it, but today I could tell he was getting tired of it.
We haven’t heard back about allergies yet. That should come any day now. I’m trying not to worry about an allergy to corn or soy. Those are pretty typical allergies, and could have a huge impact on the dietary changes we’ve already made for him. But I’m not thinking about that – don’t have much time to, anyway.
Have we seen any changes? Hard to say at this point. He has been able to sit with one of his Verbal Behavior therapists for 40 minutes and work – with reinforcements, but no breaks. Remarkable. He also came to me for comfort today – that merited a separate post. Rob says that he sees less aloofness, which is good. I’m with him all the time so it’s hard to notice subtle changes. But then again, my sister lost like 80 pounds back in the 1980’s and since I saw her all the time I didn’t notice until I saw pictures of her from several months previous.
On the downside, he is much more “stimmy” (short for self-stimulatory behaviors.) He shakes his hands in front of his face, grinds his teeth, and literally runs in circles at school (I witnessed this myself last week.) No running in circles at home – he has the humidifier and various spinning toys that he rescues from their hiding places to meet that need. Aggression has reared its ugly head again – he hasn’t pulled my hair in months, and just a few days ago pulled so hard that I nearly cried. Granted, I thwarted him from doing something he wanted to do then proceeded to confuse him, but he hasn’t tried to hurt me in a long time and I was really, really surprised and sad when he did (I learned from experience not to react – not even change facial expression when he does things like that – but this time it was impossible.) I understand that this sort of regression is normal when starting the GFCF diet and yeast meds because their little bodies are going through so much with the yeast dying off, and they just feel bad for a while. But as I said to my sister last night, I’m ready for him to feel better and to see some results from all this effort.
So long story short, we’re riding this experiment out. I’ve been told to be patient, and I’m doing my best. That’s what my life is about, anyway – immense, unending patience.
We haven’t heard back about allergies yet. That should come any day now. I’m trying not to worry about an allergy to corn or soy. Those are pretty typical allergies, and could have a huge impact on the dietary changes we’ve already made for him. But I’m not thinking about that – don’t have much time to, anyway.
Have we seen any changes? Hard to say at this point. He has been able to sit with one of his Verbal Behavior therapists for 40 minutes and work – with reinforcements, but no breaks. Remarkable. He also came to me for comfort today – that merited a separate post. Rob says that he sees less aloofness, which is good. I’m with him all the time so it’s hard to notice subtle changes. But then again, my sister lost like 80 pounds back in the 1980’s and since I saw her all the time I didn’t notice until I saw pictures of her from several months previous.
On the downside, he is much more “stimmy” (short for self-stimulatory behaviors.) He shakes his hands in front of his face, grinds his teeth, and literally runs in circles at school (I witnessed this myself last week.) No running in circles at home – he has the humidifier and various spinning toys that he rescues from their hiding places to meet that need. Aggression has reared its ugly head again – he hasn’t pulled my hair in months, and just a few days ago pulled so hard that I nearly cried. Granted, I thwarted him from doing something he wanted to do then proceeded to confuse him, but he hasn’t tried to hurt me in a long time and I was really, really surprised and sad when he did (I learned from experience not to react – not even change facial expression when he does things like that – but this time it was impossible.) I understand that this sort of regression is normal when starting the GFCF diet and yeast meds because their little bodies are going through so much with the yeast dying off, and they just feel bad for a while. But as I said to my sister last night, I’m ready for him to feel better and to see some results from all this effort.
So long story short, we’re riding this experiment out. I’ve been told to be patient, and I’m doing my best. That’s what my life is about, anyway – immense, unending patience.
Friday, February 02, 2007
I just want to be a Mom
Off to the side of this writing, you will see the “About Me” section. Allow me to elaborate – this is a partial account of the last five days in my life:
Collected stool sample and urine sample from T to send off to two different labs. Said prayer of thanks that he will now, occasionally, poop in the toilet and therefore into the makeshift potty sent home by the DAN doctor to catch the poop before it goes into the toilet. No toilet water or pee contamination allowed. Stool sample had to be put in four different vials and taken to local hospital. Thankfully when I go, there is no one else waiting to register (yes, you have to register at our hospital just to drop off a lab.) T jumps around the lobby while I answer all the questions by the receptionist. A kind woman, thankfully. Urine sample sent off via Fed Ex to lab in Kansas. Collected at 3 & 5 a.m. Yawn.
Receive letter from DAN doc saying results of “recent routine lab tests” were within normal limits. What were those tests? What were they testing for? Call DAN doc’s nurse. Gets snippy when I ask too many questions. Make mental note to tell doc to send home a flier with patients that describes all these tests and what the results may mean. This would 1) be helpful to parents and 2) mean fewer calls to nurse who gets annoyed by the amount of calls she’s getting. I should be the office manager for DAN doc – hah – in my spare time.
Shop at local natural food grocery on weekly 10% off day (not the co-op – I wear mascara, use deodorant and live on the grid, so I don’t feel too comfortable shopping there. Joking – kinda.) When employees see the binder I have with me to tell me what foods are GFCF and okay for T to eat, they go to work with me, trying to find foods for T. Hadn’t even asked for help. Bless them, bless them. Buy myself Newman’s Ginger-O’s cookies because I’ve earned it, damnit.
Local organization called that provides Respite care for us. Seems our provider is medically no longer available to drive for 3 months, maybe more. Do we want to continue with this provider or get a new one? (Provider is scheduled to come two nights in a row in the next few days – no time to get a new one for now. Providers must be trained, have an orientation meeting w/ us, etc.) Legal ramifications of having provider w/out transportation? Decision: we’ll keep her on for the next two visits, but send someone else out for training as a Plan B.
Preschool Special Ed Coordinator called to continue the proceedings of securing the make-up speech and occupational therapies that he missed ALL of last semester at school. Can I meet with the Speech Therapist at school at noon? (She’s speaking with Rob – I’m at the therapy clinic with Thomas getting his private Speech & Occupational therapy. Won’t be home until 10:30.) When I get home, I call her back – get voice mail. Call the school – get voice mail. Call the office – Speech therapist happens to be right there. We work out that she’s going to come here to see how we have our home set up with picture schedules & visual supports to help T. They’d like to do this at school, too – the way the previous teacher who resigned had them. Stomach churns as I remember the pain and bitter disappointment of that drama last month. Forget that - no time to marinate on that anymore. Or so I try to convince myself.
Medical release form needed to be taken to local pediatrician to be signed & returned to PALS so T can have his therapeutic horseback riding lessons again this year. Should have mailed it weeks ago, but it got lost in the shuffle of papers in my disaster of an office.
Researched the labs done on T on the web. Find answers to my additional questions there. Don’t have to bother snippy nurse. Silently stew about nurse & her lack of interpersonal skills. Try not to take on the task of fixing that situation – just deal with it. But I’m mentally writing a letter to doctor…
New weekly lesson plan for T’s Verbal Behavior program written - 2 hours. Maintenance probe data entered – 2 hours.
Binge on Twix “fun size” bars, potato chips (GFCF!) and Ginger O’s. Yes, it DID make me feel better.
Filled out Autism Treatment Evaluation Checklist (ATEC) online. (You do this every month or so to track improvements in speech/language, sociability, & sensory/cognitive awareness while doing the DAN protocol.) Server down so I can’t send it in. Nice. At least it was still there when I hit backspace. Tried again this morning – voila. Thank heavens for small blessings.
Call state’s Dept of Health to start process of applying for Special Health Care Services (“…a supplemental program that helps families of children with serious, chronic medical conditions pay for treatment related to their child’s condition.”) Speak with a saucy, funny woman who tells me exactly whom to call to get an appointment so she can fill it out for me. Smile at the wonderful energy of this woman on the phone. Very different from usual tone of conversations w/ state agencies.
Discover – after numerous phone calls – that neither option school system is offering to make up speech therapy missed last semester is going to work with T’s schedule. This is why it should have happened last semester, but can’t marinate on that either. Call Spec Ed coordinator, leave message that we need another option. Worry that this is not looking good for T – and he is not going to be the one that gets the short end of the stick again.
He’s had a cold this week, too.
Lab tech, medical interpreter, nutritionist, legal expert, special education law advocate, courier, researcher, Verbal Behavior program director, insurance advocate, nurse…
The thing that kills me about all this is that it takes away from my being able to be a mommy. All this can’t be done in the 2 ½ hours he’s at school. Just part of the tragedy of all of this. And time to be a wife, too?
We do have friends coming over tonight, Rob & I have a date night tomorrow (a free night of babysitting from one of his VB therapists was our Christmas present this year!), and I’m going out to dinner with other mommies from church in a few days. So we carve time out as we are able.
Very well-meaning people ask me what I do for myself. Right now that is just another “should”, and someone once told me never to "should" on myself. This blog is a great release for me – and frankly, the responses I get bolster me enormously. American Idol, Scrubs, Dallas reruns and an occasional Nora Roberts book give me a little escape time during the week. And what would I do without The Daily Show & Colbert Report?
And I have found a few moments to play with T. His sheer exuberance and huge smile when I hide behind the couch and jump out at him is such an immense source of joy for me. And I get hugs occasionally. There is nothing like the joy of your autistic child smiling at you, reaching out to you or wanting to play with you. Hopefully this will all calm down soon and I can spend more time with him.
Collected stool sample and urine sample from T to send off to two different labs. Said prayer of thanks that he will now, occasionally, poop in the toilet and therefore into the makeshift potty sent home by the DAN doctor to catch the poop before it goes into the toilet. No toilet water or pee contamination allowed. Stool sample had to be put in four different vials and taken to local hospital. Thankfully when I go, there is no one else waiting to register (yes, you have to register at our hospital just to drop off a lab.) T jumps around the lobby while I answer all the questions by the receptionist. A kind woman, thankfully. Urine sample sent off via Fed Ex to lab in Kansas. Collected at 3 & 5 a.m. Yawn.
Receive letter from DAN doc saying results of “recent routine lab tests” were within normal limits. What were those tests? What were they testing for? Call DAN doc’s nurse. Gets snippy when I ask too many questions. Make mental note to tell doc to send home a flier with patients that describes all these tests and what the results may mean. This would 1) be helpful to parents and 2) mean fewer calls to nurse who gets annoyed by the amount of calls she’s getting. I should be the office manager for DAN doc – hah – in my spare time.
Shop at local natural food grocery on weekly 10% off day (not the co-op – I wear mascara, use deodorant and live on the grid, so I don’t feel too comfortable shopping there. Joking – kinda.) When employees see the binder I have with me to tell me what foods are GFCF and okay for T to eat, they go to work with me, trying to find foods for T. Hadn’t even asked for help. Bless them, bless them. Buy myself Newman’s Ginger-O’s cookies because I’ve earned it, damnit.
Local organization called that provides Respite care for us. Seems our provider is medically no longer available to drive for 3 months, maybe more. Do we want to continue with this provider or get a new one? (Provider is scheduled to come two nights in a row in the next few days – no time to get a new one for now. Providers must be trained, have an orientation meeting w/ us, etc.) Legal ramifications of having provider w/out transportation? Decision: we’ll keep her on for the next two visits, but send someone else out for training as a Plan B.
Preschool Special Ed Coordinator called to continue the proceedings of securing the make-up speech and occupational therapies that he missed ALL of last semester at school. Can I meet with the Speech Therapist at school at noon? (She’s speaking with Rob – I’m at the therapy clinic with Thomas getting his private Speech & Occupational therapy. Won’t be home until 10:30.) When I get home, I call her back – get voice mail. Call the school – get voice mail. Call the office – Speech therapist happens to be right there. We work out that she’s going to come here to see how we have our home set up with picture schedules & visual supports to help T. They’d like to do this at school, too – the way the previous teacher who resigned had them. Stomach churns as I remember the pain and bitter disappointment of that drama last month. Forget that - no time to marinate on that anymore. Or so I try to convince myself.
Medical release form needed to be taken to local pediatrician to be signed & returned to PALS so T can have his therapeutic horseback riding lessons again this year. Should have mailed it weeks ago, but it got lost in the shuffle of papers in my disaster of an office.
Researched the labs done on T on the web. Find answers to my additional questions there. Don’t have to bother snippy nurse. Silently stew about nurse & her lack of interpersonal skills. Try not to take on the task of fixing that situation – just deal with it. But I’m mentally writing a letter to doctor…
New weekly lesson plan for T’s Verbal Behavior program written - 2 hours. Maintenance probe data entered – 2 hours.
Binge on Twix “fun size” bars, potato chips (GFCF!) and Ginger O’s. Yes, it DID make me feel better.
Filled out Autism Treatment Evaluation Checklist (ATEC) online. (You do this every month or so to track improvements in speech/language, sociability, & sensory/cognitive awareness while doing the DAN protocol.) Server down so I can’t send it in. Nice. At least it was still there when I hit backspace. Tried again this morning – voila. Thank heavens for small blessings.
Call state’s Dept of Health to start process of applying for Special Health Care Services (“…a supplemental program that helps families of children with serious, chronic medical conditions pay for treatment related to their child’s condition.”) Speak with a saucy, funny woman who tells me exactly whom to call to get an appointment so she can fill it out for me. Smile at the wonderful energy of this woman on the phone. Very different from usual tone of conversations w/ state agencies.
Discover – after numerous phone calls – that neither option school system is offering to make up speech therapy missed last semester is going to work with T’s schedule. This is why it should have happened last semester, but can’t marinate on that either. Call Spec Ed coordinator, leave message that we need another option. Worry that this is not looking good for T – and he is not going to be the one that gets the short end of the stick again.
He’s had a cold this week, too.
Lab tech, medical interpreter, nutritionist, legal expert, special education law advocate, courier, researcher, Verbal Behavior program director, insurance advocate, nurse…
The thing that kills me about all this is that it takes away from my being able to be a mommy. All this can’t be done in the 2 ½ hours he’s at school. Just part of the tragedy of all of this. And time to be a wife, too?
We do have friends coming over tonight, Rob & I have a date night tomorrow (a free night of babysitting from one of his VB therapists was our Christmas present this year!), and I’m going out to dinner with other mommies from church in a few days. So we carve time out as we are able.
Very well-meaning people ask me what I do for myself. Right now that is just another “should”, and someone once told me never to "should" on myself. This blog is a great release for me – and frankly, the responses I get bolster me enormously. American Idol, Scrubs, Dallas reruns and an occasional Nora Roberts book give me a little escape time during the week. And what would I do without The Daily Show & Colbert Report?
And I have found a few moments to play with T. His sheer exuberance and huge smile when I hide behind the couch and jump out at him is such an immense source of joy for me. And I get hugs occasionally. There is nothing like the joy of your autistic child smiling at you, reaching out to you or wanting to play with you. Hopefully this will all calm down soon and I can spend more time with him.
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