We are beginning to think about what to do for J for Kindergarten next year. He will be 5 in May so age-wise he could go to public schools. We have a great elementary school that he is districted to go to so that is not a worry for us. Here is our pros/cons list:
1. Once he is in public schools then all his therapies come from the school. J gets great therapies right now from the IU (Intermediate Unit - county). I am not saying that he will not get great therapies from the school but we know it won't be the one-on-one therapies he gets right now.
2. Private Kindergarten will allow him to continue services through the IU for one more year.
3. If he excels in a private Kindergarten then he could go to 1st grade the following year when he is 6 or go into Kindergarten again. You are only allowed to repeat a grade once so if he goes to public school for K then isn't ready to move to 1st grade he will repeat Kindergarten.
5. At 6 he will have to go to public schools.
6. Private K or a Pre-K enrichment programs are wicked expensive.
I visited a Montesorri school that I loved but I am not sure if it is a fit for J. We will take him to visit a few times before we make our decision. We would like him to go to where Kirsten is sending her kids but it is so hard to get into their program. We have been on a waiting list for 2 years there and I call 3x a month to see if they have any openings. There are 2 more schools that we are thinking about in the area also. One we have visited the other we haven't.
We made an appointment with elementary school for December to start the registration process and we have a transition meeting through the IU also. We were told we should go through the process of putting him into elementary school and have the evaluations done to see what type of classroom he should be in.
Tuesday, November 25, 2008
Friday, November 21, 2008
Jen Sucks
Okay, so I haven't been blogging. Rachel is sure to let me know about this. I have been going back and forth on the IEP and that's my excuse. It's lousy, but there it is. I hate the IEP process at the preschool level. It seems pointless. I feel as if no matter what the paper says, the class will be the same either way, with the exception of maybe an extra 30 minutes of ST here or there. It is what it is. Here's how I feel about school. It's better than stimulation than I could offer on a full-week basis, but ultimately, it's not going to be the ticket. It does make me feel inadequate though. (Autism will generally reduce you to your lowest level of incompetency.) No really, it's THAT awesome. I feel like I should be all over his school program, reviewing goals, tracking progress, observing, etc. More or less, school is just a place to go where he may learn something, but at least I'll have some time to try and figure what to do next. So, what are we trying next? We'll doing a few staple biomed supps like CLO, MB-12, zinc, probiotics, enzymes, P5P, E. I'm hot on trying GABA since we have such a lack of calmness and focus (unless it involves the alphabet.) I'm currently re-thinking the GF/CF diet b/c I'm not sure if he's a responder. I have no evidence of sensitivity to either and behavioral changes aren't apparent. I hate it throw in the towel on it, but I also don't want to waste time on things that are NOT HELPING. Got a bunch of blood work back and have a few markers suggestive of mito dysfunction, so we'll need to test for the MTHFR gene mutation so I can join Rachel's wicked happy club. We've also began work with a homeopath whom I really like and we've done two sessions so far with a cranial osteopath. Something's got to give. For Christmas, we are asking the grandparents for a child-tracking device b/c he's such a flight risk and he's so goddamned fast. Awesome.
HAPPY BIRTHDAY to Sue. At least I'm not so ridiculously old in comparison anymore. Because OLD and BITTER is such an attractive combo :)
HAPPY BIRTHDAY to Sue. At least I'm not so ridiculously old in comparison anymore. Because OLD and BITTER is such an attractive combo :)
This week by Rachel
Let's see...we had a good appointment with J on Monday with a new developmental ped who took our insurance. Her name was Dr. Beth Parrish at St. Chris Hospital in Abington. J scored at a 4 1/2 yr old cognitively (yipee) and about a 3 yr old language wise. So, we definetely have to increase his speech therapy - which has been on my mind to do recently anyway. I made an appt with a speech therapist who was recommended to me - he will have an assessment done in December. I asked Dr. Parrish if she thought J would be MR (mentally retarded) and she said she did not think so at this point. They can't test for this until he can get an IQ test. JL and I were happy with her and with the overall appt.
Then I got some bloodwork back and J is positive for the MTHFR gene mutation. This made me wicked sad. I don't completely understand this but I had the test done b/c I have been reading on message boards that if you have this and go under anesthesia then he could regress b/c of the nitrite oxide. JL read that 60% of the population have this mutation. It still makes me sad that JL and I gave this to J. I don't believe that the MTHFR gene mutation has anything to really do with his autism but it means he is inoxidative stress. Dr. Miller (J's ped) said that we are already doing everything to help him with the oxidative stress: Mb12 shots and glutathione. Also, having this mutation increases his risk for vascular disease later in life.
I do think we should do some more genetic testing so see what else is going on.
Then I got some bloodwork back and J is positive for the MTHFR gene mutation. This made me wicked sad. I don't completely understand this but I had the test done b/c I have been reading on message boards that if you have this and go under anesthesia then he could regress b/c of the nitrite oxide. JL read that 60% of the population have this mutation. It still makes me sad that JL and I gave this to J. I don't believe that the MTHFR gene mutation has anything to really do with his autism but it means he is inoxidative stress. Dr. Miller (J's ped) said that we are already doing everything to help him with the oxidative stress: Mb12 shots and glutathione. Also, having this mutation increases his risk for vascular disease later in life.
I do think we should do some more genetic testing so see what else is going on.
Tuesday, November 18, 2008
Feeding Therapy - Day 2 - Sue
I expected the worst day in my life, since CJ6 began feeding therapy today. On the contrary, CJ6 was awesome and ate 30 bites of blueberries, broccoli, and carrots!!!!!! I am flabergasted and ecstatic!!!
And then, he ate dehydrated apple chips at his social skills class. Say what?????? Are you serious? Is this the same ASD kid that I have been trying to force feed for the past 4 years?
And then, he ate dehydrated apple chips at his social skills class. Say what?????? Are you serious? Is this the same ASD kid that I have been trying to force feed for the past 4 years?
More of CJ6's history and Mito? -Sue
CJ6's feeding issues stem back to his first birthday. He would refuse food, gagging and throwing up on both of us. At first, I thought CJ6 did not want to get messy or that it was sensory based. At our 2 year well visit, I asked if his selective eating could be metabolic or due to allergies. I was told that he was growing and I should not worry. At age 3, I came back to the pediatrician with a child that had 5 foods he would eat without puking (all carbohydrates), and oh yeah......autism. At that point, I was told about early intervention. Fine, but what about a metabolic issue? Again, I was told "don't worry". Once we saw the dev pediatrician, he suggested a local metabolic geneticist. We started to rule out Fragile X, subtelomere microdeletions, FISH, etc... We did find that CJ6 was deficient in many amino acids (especially the branched chain and carnitine) ; He did the standard workup, but I never felt that we were getting anywhere with him. We still see this doctor because he has been monitoring CJ6's amino acids and prealbumin levels.
Not thinking there was a mitochondrial issue, we began working with a nutritionist. We tried to implement the Specific Carbohydrate Diet, however, CJ6 refused to eat...... for 7 days!!!!!! At this point, I knew that we needed a behavioral feeding therapist on board. 3 months later, we found Dr Dawson, who had been on the Kennedy Krieger intensive feeding team for years. She had just moved to Westchester University. We started the intake procedure and she said that we needed to run allergy panels first. Of course, up popped IgE egg and peanut allergies. Once this came back positive, she wanted us to do a thorough gi workup.
At the same time, I began talking to another mother whose daughter was diagnosed at 2 1/2 with autism. She had her daughter scoped at age 3 by both Dr Soriano at St Christopher's and Dr Krigsman. Both doctors found lymphnoid hyerplasia, significant inflammation and ulcerations in her daughter. Both docs agreed that her daughter should be put on sulphasalazine. Her daughter was scoped a year later, and the inflammation had disappeared. Her daughter is now 9 years old, has lost her diagnosis, is in mainstream classes, takes hip hop dance classes and had a spa birthday party! This woman's story became my dream and so I pursued the gi angle.
Before we moved to PA, the original dev ped had suggested that we see a ped gi doc that had put CJ6 on Elecare for low protein intake. It was only one appt. At this point, Dr Soriano had moved back to Chili and Dr Krigsman was not accepting insurance (which was out of the question). With this limited workup, we made an appt at a local hospital by default. After waiting 6 months to get in, I presented the doc with 25 gi related symptoms and then told him CJ6 had autism. The doctor scratched his head and asked me why I was not at the Autism Resource Center. I waited 6 months for this!!! I knew that I needed to go elsewhere! I needed to go to a doctor that specialized in scoping kids on the spectrum. This doctor would not have known what to look for and we certainly would have missed CJ6's sucrase-isomaltase deficiency. A month later, I spoke to another warrior dad that told me about Dr Buie up at Harvard Medical School. I called and got my name on his waiting list ASAP!
After talking to yet another warrior mother, I took that boys to Dr Jyonouchi, a research immunologist at UMDNJ. She is highly respected and has been recruited by NIH for years, but will not leave her lab facilities. (BTW, her son is a resident at CHOP working under Dr Orange. He often calls his mother to run workups on their patients.) Well, she ran cytokine profiles for both boys. The interesting part of this is that when she exposed CJ6's blood to milk, and soy, he made very high levels of interferon gamma. Wow! I am glad that we had already gone GFCFSF!!!!
I also spoke to another mother that told me that she thought her son had mito, and told me that CJ6 had red flags! I did some research on the UMDF's website and realized that we had already been doing a lot of the mito cocktail, but just added in CoQ10 and Vit E. What I found very interesting was that both CJ6 and TR2 made huge gains when we put them on Acetyl Carnitine!
We finally got to see Dr Buie in April, and we scheduled CJ6'S scope for July 31st. (He is one busy man!!!!) Leading up the scope, we stopped all supplements 2 weeks in advance, and CJ6 began throwing up. It was not until we were in the car to Boston, that I realized he had not pooped in 2 weeks. Nothing can go in if nothing is coming out! We began the 2 day bowel prep with castor oil, magnesium citrate, ducolax, and miralax. At 8pm the night before the scope, I called the gi on staff and he said to do more ducolax, miralax and a saline enema. We got a little bit of feces out, but when Dr Buie went in, CJ6 was impacted through the descending, transverse, ascending colon and the cecum!!! He immediately prescribed Carnitor, which I immediately told him that we had stopped the acetyl Carnitine 2 weeks before when the pseudo-obstruction had begun. When we got the scope back, we found out that CJ6 did not have inflammation which Dr Buie claimed was because we had done lots of "steps to rescue him"(CFSF, elecare, gastrocrome, singulair). However, we did find out that CJ6 was infected with aeromonas hydrophila (a bacteria found in fish and only found in people that are immunosuppressed). We treated with two weeks of flagella. The biggest revelation is that CJ6 is deficient in lactase, sucrase and isomaltase!!!! Wow! He was already not ingesting lactose because of our CF diet. In August, we started giving him Sucraid and Kirkman's CarbDigest for the Isomaltase. In the last several weeks, we have seen huge bursts!!! So....then I wonder......if CJ6 could not digest the carbohydrates that he loved to eat, what were they doing......they were putrifying and serving as a good food source for yeast and bacteria.....which were undergoing fermentation.....which produce lactic acid, carbon dioxide, acetylaldehyde (so he was basically his own little distillery). Crazy, huh?
During our 6 month gi wait at the local hospital , our pediatric immunologist (who also happens to be a DAN doctor) had run the ammonia, lactic acid and pyruvate. I finally got my act together and showed them to the metabolic geneticist this past May. Of course, we ran the tests again in a hospital setting with his nurse that immediately put the blood on ice (for ammonia) and performed the lactic acid (without a tourniquette). When they came back high a second time, he discounted it, saying that CJ6 must have struggled during the blood draw, accounting for the high lactic acid levels. CJ6 did not struggle.
Dr Buie did not think that the results were insignificant and told us to pursue the mitochondrial angle. Back in July, we made an appointment for Dr Marvin Natowitc at the Cleveland Clinic for June of 2009!!!! Dr Buie told us to get some workup done before the Cleveland Clinic visit with Dr Marc Korson of Tufts University. We had to apply to this doctor and we have been accepted, so we will be up in Boston for that 5 hour visit on Dec 9th.
In April, I also applied to be a patient of Dr Zimmerman's since we had never had a neurologist on board. I knew that he was highly respected and interested in immunology. I figured that we should just rule out silent seizures that might be happening during sleep. We were accepted but waited until October for an appt. It just so happens that Dr Zimmerman showed CJ6's labs to a leading diagnostician!
I understand that mitochondrial disorders are a spectrum. Even having been told that the problem may lie in Complex I, I also know that there are over 36 different proteins that are responsible for transferring electrons from NADH to Complex II. The ineffiency might be genetic, but I am wondering if CJ6's lack of efficiency might have more to do with his heavy metal uptake. .........
Well, CJ6 has persistantly had low hemacrit, hemoglobin, and high coproporphyrins. The porphyrin profile indicates lead uptake, but our immunologist wrote a grant and paid to have CJ6 undergo a cadnium gamma x-ray fluorescence of his tibia at Mt Sinai in NY. His bone is loaded with lead (comparable to someone who has been stripping paint off bridges their entire life). Yes, we have had CJ6's blood serum checked repeatedly for lead and it was always <3 ug/dL.
So, his mitochondrial inefficiency might be simply related to his heavy metal uptake rather than a true primary genetic disorder. At least that is what I want to believe until I am told otherwise......
Not thinking there was a mitochondrial issue, we began working with a nutritionist. We tried to implement the Specific Carbohydrate Diet, however, CJ6 refused to eat...... for 7 days!!!!!! At this point, I knew that we needed a behavioral feeding therapist on board. 3 months later, we found Dr Dawson, who had been on the Kennedy Krieger intensive feeding team for years. She had just moved to Westchester University. We started the intake procedure and she said that we needed to run allergy panels first. Of course, up popped IgE egg and peanut allergies. Once this came back positive, she wanted us to do a thorough gi workup.
At the same time, I began talking to another mother whose daughter was diagnosed at 2 1/2 with autism. She had her daughter scoped at age 3 by both Dr Soriano at St Christopher's and Dr Krigsman. Both doctors found lymphnoid hyerplasia, significant inflammation and ulcerations in her daughter. Both docs agreed that her daughter should be put on sulphasalazine. Her daughter was scoped a year later, and the inflammation had disappeared. Her daughter is now 9 years old, has lost her diagnosis, is in mainstream classes, takes hip hop dance classes and had a spa birthday party! This woman's story became my dream and so I pursued the gi angle.
Before we moved to PA, the original dev ped had suggested that we see a ped gi doc that had put CJ6 on Elecare for low protein intake. It was only one appt. At this point, Dr Soriano had moved back to Chili and Dr Krigsman was not accepting insurance (which was out of the question). With this limited workup, we made an appt at a local hospital by default. After waiting 6 months to get in, I presented the doc with 25 gi related symptoms and then told him CJ6 had autism. The doctor scratched his head and asked me why I was not at the Autism Resource Center. I waited 6 months for this!!! I knew that I needed to go elsewhere! I needed to go to a doctor that specialized in scoping kids on the spectrum. This doctor would not have known what to look for and we certainly would have missed CJ6's sucrase-isomaltase deficiency. A month later, I spoke to another warrior dad that told me about Dr Buie up at Harvard Medical School. I called and got my name on his waiting list ASAP!
After talking to yet another warrior mother, I took that boys to Dr Jyonouchi, a research immunologist at UMDNJ. She is highly respected and has been recruited by NIH for years, but will not leave her lab facilities. (BTW, her son is a resident at CHOP working under Dr Orange. He often calls his mother to run workups on their patients.) Well, she ran cytokine profiles for both boys. The interesting part of this is that when she exposed CJ6's blood to milk, and soy, he made very high levels of interferon gamma. Wow! I am glad that we had already gone GFCFSF!!!!
I also spoke to another mother that told me that she thought her son had mito, and told me that CJ6 had red flags! I did some research on the UMDF's website and realized that we had already been doing a lot of the mito cocktail, but just added in CoQ10 and Vit E. What I found very interesting was that both CJ6 and TR2 made huge gains when we put them on Acetyl Carnitine!
We finally got to see Dr Buie in April, and we scheduled CJ6'S scope for July 31st. (He is one busy man!!!!) Leading up the scope, we stopped all supplements 2 weeks in advance, and CJ6 began throwing up. It was not until we were in the car to Boston, that I realized he had not pooped in 2 weeks. Nothing can go in if nothing is coming out! We began the 2 day bowel prep with castor oil, magnesium citrate, ducolax, and miralax. At 8pm the night before the scope, I called the gi on staff and he said to do more ducolax, miralax and a saline enema. We got a little bit of feces out, but when Dr Buie went in, CJ6 was impacted through the descending, transverse, ascending colon and the cecum!!! He immediately prescribed Carnitor, which I immediately told him that we had stopped the acetyl Carnitine 2 weeks before when the pseudo-obstruction had begun. When we got the scope back, we found out that CJ6 did not have inflammation which Dr Buie claimed was because we had done lots of "steps to rescue him"(CFSF, elecare, gastrocrome, singulair). However, we did find out that CJ6 was infected with aeromonas hydrophila (a bacteria found in fish and only found in people that are immunosuppressed). We treated with two weeks of flagella. The biggest revelation is that CJ6 is deficient in lactase, sucrase and isomaltase!!!! Wow! He was already not ingesting lactose because of our CF diet. In August, we started giving him Sucraid and Kirkman's CarbDigest for the Isomaltase. In the last several weeks, we have seen huge bursts!!! So....then I wonder......if CJ6 could not digest the carbohydrates that he loved to eat, what were they doing......they were putrifying and serving as a good food source for yeast and bacteria.....which were undergoing fermentation.....which produce lactic acid, carbon dioxide, acetylaldehyde (so he was basically his own little distillery). Crazy, huh?
During our 6 month gi wait at the local hospital , our pediatric immunologist (who also happens to be a DAN doctor) had run the ammonia, lactic acid and pyruvate. I finally got my act together and showed them to the metabolic geneticist this past May. Of course, we ran the tests again in a hospital setting with his nurse that immediately put the blood on ice (for ammonia) and performed the lactic acid (without a tourniquette). When they came back high a second time, he discounted it, saying that CJ6 must have struggled during the blood draw, accounting for the high lactic acid levels. CJ6 did not struggle.
Dr Buie did not think that the results were insignificant and told us to pursue the mitochondrial angle. Back in July, we made an appointment for Dr Marvin Natowitc at the Cleveland Clinic for June of 2009!!!! Dr Buie told us to get some workup done before the Cleveland Clinic visit with Dr Marc Korson of Tufts University. We had to apply to this doctor and we have been accepted, so we will be up in Boston for that 5 hour visit on Dec 9th.
In April, I also applied to be a patient of Dr Zimmerman's since we had never had a neurologist on board. I knew that he was highly respected and interested in immunology. I figured that we should just rule out silent seizures that might be happening during sleep. We were accepted but waited until October for an appt. It just so happens that Dr Zimmerman showed CJ6's labs to a leading diagnostician!
I understand that mitochondrial disorders are a spectrum. Even having been told that the problem may lie in Complex I, I also know that there are over 36 different proteins that are responsible for transferring electrons from NADH to Complex II. The ineffiency might be genetic, but I am wondering if CJ6's lack of efficiency might have more to do with his heavy metal uptake. .........
Well, CJ6 has persistantly had low hemacrit, hemoglobin, and high coproporphyrins. The porphyrin profile indicates lead uptake, but our immunologist wrote a grant and paid to have CJ6 undergo a cadnium gamma x-ray fluorescence of his tibia at Mt Sinai in NY. His bone is loaded with lead (comparable to someone who has been stripping paint off bridges their entire life). Yes, we have had CJ6's blood serum checked repeatedly for lead and it was always <3 ug/dL.
So, his mitochondrial inefficiency might be simply related to his heavy metal uptake rather than a true primary genetic disorder. At least that is what I want to believe until I am told otherwise......
Monday, November 17, 2008
Happy Anniversary by Rachel
Happy Anniversary to us! We have been married for 7 years today and together 11 years total. This last few years have been very trying on our marriage, our life and our sanity but we are still here...together.
JL is a great husband, dad, provider and person. I am so lucky to have him in my life (in fact, everyone who knows him is lucky-he is definetely the person you want in your corner). Most of all he makes me laugh. And let me tell you when you have a child with ASD...a sense of humor is sometimes is the only thing that gets you up in the morning.
Do you want to know how we are spending our anniversary? We are going to another neurodevelopment pediatrician for a second opinion :) Not by choice, but after waiting 14 months for an appointment with a doctor who takes our insurance this was the day we got.
I love JL more today then I did when I married him. I am not sure I always tell him or show him this but it's true. Sometimes when you are pushed and pulled a 100 different directions you forget how important it is to reconnect with the people you love.
So on that note I am off to give my sweet husband a big hug!
JL is a great husband, dad, provider and person. I am so lucky to have him in my life (in fact, everyone who knows him is lucky-he is definetely the person you want in your corner). Most of all he makes me laugh. And let me tell you when you have a child with ASD...a sense of humor is sometimes is the only thing that gets you up in the morning.
Do you want to know how we are spending our anniversary? We are going to another neurodevelopment pediatrician for a second opinion :) Not by choice, but after waiting 14 months for an appointment with a doctor who takes our insurance this was the day we got.
I love JL more today then I did when I married him. I am not sure I always tell him or show him this but it's true. Sometimes when you are pushed and pulled a 100 different directions you forget how important it is to reconnect with the people you love.
So on that note I am off to give my sweet husband a big hug!
Monday, November 10, 2008
A feel-good moment:) by Kirsten
I had a great moment today that I have to share! I was picking J up at school/daycare today & when I walked in they were sitting in a circle on the carpet & the teacher was reading a story. J immediately got up & walked over to me, but then realized that he wanted to hear the story! He said "I'll be right back" & sat back down with the group. Not at the edge or in the back, but right in the middle between 2 other kids. He had his eyes on the teacher & the book with a HUGE smile on his face the whole time. The teacher asked lots of questions during the story & J answered each one! He started cracking up at the silly ending of the book too! Just standing there watching him in the group of NT (Neurotypical...ie 'normal'...ugh) kids, I don't think that anyone would ever have picked him out in the crowd. In fact, he might have looked like the MOST engaged, happy, excited kid in the class! It really made me so happy. There were a couple of other moms standing there waiting for the story to be over & I just thought "there is no way that they are looking at their kids with the amazement and joy that I am feeling right now". That is a definite silver lining to the whole ASD thing...small things that seem insignificant or ordinary to parents of NT kids can be huge accomplishments for us. I even find myself marvelling over things that my NT daughter does as well. They are little things that J did not do at her age (like asking another kid to play).
Thank God for moments like this one...they keep me going & sane on the harder days.
Thank God for moments like this one...they keep me going & sane on the harder days.
J's supplements...by Rachel
So here is a look at J's supplement schedule to date:
Morning (this is all mixed in a shot glass):
1 tsp of fish oil with Coq10
1 capsule Taurine
1 capsule Acetyl L-Carnitine
1 capsule L-Carnitine
1 capsule Vit. E (Gamma E 500 Tocooherol)
2 capsule Methylaid
1 capsule Minerall
1/2 tsp essential GSH oral liposomal Glutathione
starting today 2 drops of GSE for 3 weeks
Afternoon (in his water with lunch):
1 capsule Probiotic
1/2 tsp Vit. C
Evening (in his water with dinner):
1 capsule Probiotic
1/4 tsp Vit. C
MB12 shots every 3 days
Authia Cream twice a day
And when I can I try and get in 2 more Methylaids and 1 capsule Taurine (though recently this hasn't been happening often).
Randomly he will throw this all up. Like this morning. Nothing like a little fish oil in the carpet to make it smell like the ocean!! He doesn't throw up immediately (like you would think) but within an hour after taking it all. Not sure what is doing it though? He has had a cold so maybe it's just a combination of post nasal drip and a disgusting mix of fish oil and such.
His ped. suggested taking it at night so I tried this yesterday but the problem with this is that I have to spread out the GSE (grapefruit seed extract for yeast) and the probiotic by at least 2 hours (if you don't spread it out they cancel each other out). Also, probiotics should be taken at night. It's just not enough hours in the day to get this all in.
I am just happy he is taken it at all - he went on strike a month ago and would not take anything. It sucked! It literally put me in a panic b/c I know how much the supplements help him.
I also have been awful about giving the MB12 shot. I have not been able to stay up late enough to make sure he is completely asleep to give it. I have to do it tonight! Last night he had on PJ's that zipper up (he calls it his "wolf suit" from Where the Wild Things Are) and there was no way I was going to be able to unzip it and give him a shot without waking him up.
Morning (this is all mixed in a shot glass):
1 tsp of fish oil with Coq10
1 capsule Taurine
1 capsule Acetyl L-Carnitine
1 capsule L-Carnitine
1 capsule Vit. E (Gamma E 500 Tocooherol)
2 capsule Methylaid
1 capsule Minerall
1/2 tsp essential GSH oral liposomal Glutathione
starting today 2 drops of GSE for 3 weeks
Afternoon (in his water with lunch):
1 capsule Probiotic
1/2 tsp Vit. C
Evening (in his water with dinner):
1 capsule Probiotic
1/4 tsp Vit. C
MB12 shots every 3 days
Authia Cream twice a day
And when I can I try and get in 2 more Methylaids and 1 capsule Taurine (though recently this hasn't been happening often).
Randomly he will throw this all up. Like this morning. Nothing like a little fish oil in the carpet to make it smell like the ocean!! He doesn't throw up immediately (like you would think) but within an hour after taking it all. Not sure what is doing it though? He has had a cold so maybe it's just a combination of post nasal drip and a disgusting mix of fish oil and such.
His ped. suggested taking it at night so I tried this yesterday but the problem with this is that I have to spread out the GSE (grapefruit seed extract for yeast) and the probiotic by at least 2 hours (if you don't spread it out they cancel each other out). Also, probiotics should be taken at night. It's just not enough hours in the day to get this all in.
I am just happy he is taken it at all - he went on strike a month ago and would not take anything. It sucked! It literally put me in a panic b/c I know how much the supplements help him.
I also have been awful about giving the MB12 shot. I have not been able to stay up late enough to make sure he is completely asleep to give it. I have to do it tonight! Last night he had on PJ's that zipper up (he calls it his "wolf suit" from Where the Wild Things Are) and there was no way I was going to be able to unzip it and give him a shot without waking him up.
Wednesday, November 5, 2008
It's a ROLLERCOASTER! by Kirsten
Reading the post from Rachel made me think of the rollercoaster analogy. I always think of ASD as a rollercoaster & I imagine what part of the rollercoaster we are on. Are we at the top? If so, does that mean we are going to plunge down at any moment? Are we headed DOWN (there have been plenty of those days too)??? My favorite days are the ones that feel like we are climbing steadily upward in that comfortable space without the fear of dropping! Did I mention that I HATE rollercoasters? :)
Some days for us can feel completely 'normal'. We are fortunate that JC has made so much progress over the last year that there are days no one would ever know that he was on the spectrum at all. Then there are the DOWN rollercoaster days and times. Those are the ones when it really hits us & they pretty much suck. I wish I could say that the ups & downs make me appreciate the ups - mostly I have to keep reminding myself that things will get better. I try really hard to appreciate and be grateful for the good stuff. I really believe it is so important to do that - I just need to make an effort to do it.
Some days for us can feel completely 'normal'. We are fortunate that JC has made so much progress over the last year that there are days no one would ever know that he was on the spectrum at all. Then there are the DOWN rollercoaster days and times. Those are the ones when it really hits us & they pretty much suck. I wish I could say that the ups & downs make me appreciate the ups - mostly I have to keep reminding myself that things will get better. I try really hard to appreciate and be grateful for the good stuff. I really believe it is so important to do that - I just need to make an effort to do it.
Bad Night by Rachel
Last night when I got home from work J was having a full blown tantrum like he hasn't had in a year. He was screaming, crying, kicking and only wanted my husband. When I came in the door he screamed at me "get out now" and didn't want me near him (which is unusual). He couldn't calm down - finally after about 45 minutes of this we finally got him into his PJ's and into our bed but he still was hiccuping and crying some. We haven't seen him do this in at least 8-12 months. He use to have these types of tantrums 3-4 times a week where he would be inconsolable. I have no idea what set him off - was it he was just tired or he is coming down with something or did he have an infraction to the diet. I have no idea.
My husband said what started it was he was in the bathroom for his bath and saw the Motrin bottle and said he wanted "white medicine". I had given him some earlier in the day b/c I thought he felt hot. My husband, JG, said no - then J started freaking out. Do you think he might not have felt well and wanted the Motrin to feel better? I don't know. We did end up giving to him a dose though.
I am taking him to the drs today to talk about diabetes testing (he drinks a ton of water), zinc + selenium testing and I will have him check his ears and throat to make sure he isn't sick.
I hated seeing him so upset last night - it brought back so many bad nights from before we started this biomedical journey.
My husband said what started it was he was in the bathroom for his bath and saw the Motrin bottle and said he wanted "white medicine". I had given him some earlier in the day b/c I thought he felt hot. My husband, JG, said no - then J started freaking out. Do you think he might not have felt well and wanted the Motrin to feel better? I don't know. We did end up giving to him a dose though.
I am taking him to the drs today to talk about diabetes testing (he drinks a ton of water), zinc + selenium testing and I will have him check his ears and throat to make sure he isn't sick.
I hated seeing him so upset last night - it brought back so many bad nights from before we started this biomedical journey.
Tuesday, November 4, 2008
Election Day 2008 by Sue
On election day, it was a struggle to get out the door with the 2 kids and I dreaded bringing them to the polls with me but I had no other option. When I arrived at the local elementary school, I was relieved to see small lines. TR2 went into a stroller and CJ6 was told to hold the handles of the stroller. Finally, I arrived at the front of the line, and the lady checked my id, as I signed my name. I walked over to the voting machine, and told CJ6 to follow me. He was more preoccupied with the signs that indicated "This way ----->". He was closing one eye and lining his finger up with the arrow on the sign. As I arrived at the curtain, the volunteer told me to press the green "vote" button when I was finished selecting my candidates. His words must of permeated CJ6's brain because CJ6 slyly slide past me and into the booth. Within a flash, he had pressed the green "vote" button. What the f*@# just happened! I asked the volunteer if I could do it again, and I was told that I lost my opportunity. I was pissed!!!!!!!!!!! It is an hour later and I am still fuming!!!! Just because I have a child with autism, I am denied my democratic say!!! This was the straw that broke the camel's back! I am sure that I will look back on this years from now and laugh, but right now I am pissed, angry and crying as I type! Slowly and gradually, I feel as if I am losing my own identity!
This was just the event that summed up exactly how I have felt for the past year..... which is that I have lost any resemblance of my former life!!! I used to have the opportunity to read the newspaper, or go water skiing, skiing, etc.. Fun is no longer had. It has been put on the back burner for the sheer fact that my kids need my immediate assistance. I firmly agree that my children's health and well being is the top priority, but today's events just reminded me that I have lost "me" during this time.
It actually goes deeper than just foregoing the fun parts of my former life. Keep in mind, that I gave up my teaching job and this incidence reminded me that I miss that. I used to have adult conversations with my colleagues and stimulating discussion with my high school students. I also used to have 30 minutes of peace and serenity during my drive to work and back. I could listen to the radio or make phone calls. This was "my time" and I don't get this anymore. I used to dress up everyday, whereas I now wear the same cotton shirt and sweats. I know I will go back to teaching someday, and I will feel the same sense of fulfillment that I used to get, but I miss the kids and my former life.
This was just the event that summed up exactly how I have felt for the past year..... which is that I have lost any resemblance of my former life!!! I used to have the opportunity to read the newspaper, or go water skiing, skiing, etc.. Fun is no longer had. It has been put on the back burner for the sheer fact that my kids need my immediate assistance. I firmly agree that my children's health and well being is the top priority, but today's events just reminded me that I have lost "me" during this time.
It actually goes deeper than just foregoing the fun parts of my former life. Keep in mind, that I gave up my teaching job and this incidence reminded me that I miss that. I used to have adult conversations with my colleagues and stimulating discussion with my high school students. I also used to have 30 minutes of peace and serenity during my drive to work and back. I could listen to the radio or make phone calls. This was "my time" and I don't get this anymore. I used to dress up everyday, whereas I now wear the same cotton shirt and sweats. I know I will go back to teaching someday, and I will feel the same sense of fulfillment that I used to get, but I miss the kids and my former life.
Monday, November 3, 2008
The story of CJ6 and TR2 by Sue
It was 20months ago that CJ6 received an official diagnosis of autism from the developmental pediatrician. He was 3 1/2 years old at the time, but we had suspected something was just not right a year before the diagnosis. CJ6 is now 5 years old and we are seeing gradual improvements due to aggressive biomedical interventions, and ABA therapy. My mantra is that in the race of life, CJ6 is the turtle rather than the hare. Of course, we all know who wins the race in the end! Putting my son's autism in this perspective allows me to hold onto hope because I don't expect miracles everyday. When the miracles do occur, I appreciate every little milestone!
I also have a 2 year old son, TR2. CJ6's younger brother has great joint attention and social skills for now, but has many worrisome red flags. TR2 has a complex medical history and his lab results suggest that he should be on the spectrum, but we are doing our utmost to prevent that from happening!
I will begin my story back in August of 2003, when CJ6 was born. We were anxiously awaiting the birth of our firstborn son. The pregnancy was uneventful, even though I had gained 56 lbs. A few days before the due date, the obstetrician measured my belly and was concerned that the child might be 11 lbs. Despite having been a 10lb 9 oz baby myself, I was horrified by the prospect of delivering a football player. The OB suggested that we do an induction the day before the actual due date. At that point in the pregnancy, I was sooooo uncomfortable that I was totally psyched to have it end! When I arrived at the hospital at the scheduled time, I was already having mild contractions and I was dilated 4cm. Theoretically, I could have waited a little longer, but they began me on a pitocin drip at 6am. Since this was my first child, I had no reference, but I thought that the contractions were very strong and asked for an epidural at 7:45am. Epidural can slow down labor, but I did not care because the pitocin was speeding it up. At some point, the fetal heart monitor began to drop, and the nurses rushed into the room. They turned me on my side and rocked me violently. CJ6's heartrate jumped backup. I was stunned and inquired about the incident. I was told that the baby sometimes grabs the umbilical cord. What? Are you serious! There is something inherently wrong if the child is choking themselves in utero. Survival of the fittest came to mind and I thought that if a child is grabbing their own lifeline, then maybe they were never intended to survive. At noon, I was fully dilated and began pushing. The contractions were happening so quickly that it did not give Cj6's head a chance to turn, so he presented "sunnyside up". By 12:45pm, CJ6 had arrived into this world. He scored a 9-9 on his apgar test and after he was swaddled, he immediately latched on. Both my husband and I were amazed that the delivery went so smoothly since our childbirth class informed us of so many horror stories. 30minutes after CJ6 was born, his face turned blue. I panicked, since we had a family history of heart defects. Once we unwrapped him from the swaddle, we realized that the rest of his body was pink therefore his heart was fine. His face turned blue because it had been bruised by my pelvis during the strong pitocin contractions. For the next 2 weeks, his face remained swollen and we could not see his eyes.
I exclusively breastfed CJ6 but at 2 weeks old, I gave him a bottle of Similac. My milk production did not seem to be keeping up with his demands. Occasionally, I would give a supplemental bottle, but it became more frequent around 4 weeks of age, when he broke out in a rash. I was told it was eczema and to treat it with Dove soap. There was no mention that eczema might be related to food allergies. At 6 weeks of age, he had such a severe case of cradle cap that we were sent to the dermatologist because CJ6's eyes were shut closed for 2 days. The dermatologist did mention that cradle cap is caused by the body's hyper response to yeast. This information was somewhat interesting since I was a biology teacher, but in reality, I only cared that my son was getting better when we used the topical steroid oil! For the next 2 months, CJ6 was colicky. The pediatrician placated me, a first time mom, and claimed that 3-4 hours of ear curling screams was typical. Only in retrospect did I figure out that it was occurring during the supplemental feedings. We tried all brands and types of formulas. I tried eliminating gassy vegetables such as broccoli and cauliflower from my diet. We even tried gas drops, but nothing seemed to help. After Halloween, CJ6 broke out in bumps. The pediatrician thought that it might be from eating the chocolate and to eliminate it from my diet. Recently, we discovered that CJ6 is IgE allergic to peanuts. Thinking back to that Halloween, I realized that I ate a lot of the coveted Reese's peanut butter cups.
At first glance, all developmental milestones seemed to be met. CJ6 sat and rolled over at the right times. He started to sleep through the night at 4 months old. He began army man crawling at 7 months, but never achieved the hand over hand method before he began to walk at 10 months. By 11 months, he was running and he never looked back. Crawling was so inefficient, and I didn't dwell on it because I was doing my earnest to keep pace with his running.
It was at this same time, that we moved to NY state. I needed to find a new pediatrician as well as a daycare provider because I needed to go back to work for financial reasons. I was terrified to leave my child with a person I did not know well, and focused on interviewing childcare personnel. Since I quickly needed to make a 12 month well visit, I randomly picked a pediatrician from a large practice because they offered late night and weekend hours. I had obtained a copy of CJ6's medical records from the previous pediatrician and I brought them with me to the 12 month well visit (2 days after his first birthday). I took a picture of him eating cake at his birthday party, but after this well visit we started to see feeding issues arise. Only now, have I realized that the new pediatrician gave CJ6 an extra 4th dose of Hep B which he should never have gotten. Another interesting point to make is that CJ6 does not make Hep B antibodies even after the extra shot. During my pregnancy, the OB checked my titers, and I don't make antibodies to Hep B either. I had a series of 3 Hep B shots when I was in college. Even TR2 does not make Hep B antibodies after having had 3 booster shots.
At 14 months, I recorded that CJ6 said his first word. It was "tickle". We used to tickle him into fits of giggles, holding back until he said the word. Now, I know that this is actually an ABA technique. Individual words followed, and at the 18month well baby visit, I was asked if he knew 50 words. Of course he knew 50 words, he could count to 20 , so that was at least 20 words right there and he could state every letter of the alphabet, so that was another 26 words. I was not asked if he was using words in a meaningful purposeful way. I was not asked if he pointed or would drag me to an interesting object. I was not asked if he would spontaneous hug me. I was not asked the right questions !! I was also back at work, and by moving, we had lost contact with other children that were the same age as CJ6. I was isolated in my own little world with no one to compare CJ6 against. This existence was short lived bliss. No one had applied the word "autism" to our family.
CJ6's feeding issues were not little issues in my mind. He would not feed himself, but was fine with me scooping up baby food. He would only pick up certain dry foods. He would forcibly gag and puke on both of us if he did not want to eat. Feeding would end with both of us taking baths! At first, I thought that this child was stubborn and I had met my match. Then I began to think of metabolic reasons for not eating certain foods. As a biology teacher, I was constantly lecturing about metabolic and genetic diseases such as PKU and fragile X. At the 2 year well visit, we met with another pediatrician in the same practice, and I mentioned my concerns. I was afraid that we missed a metabolic disease in the newborn screen when we moved states. PA only required 10 tests and NY had just mandated a new law with 41 different tests. I also suggested the possibility of food allergies, but was told that he was growing so I should not be concerned about the picky eating habits.
6 months later, my mother was watching television, and an excerpt about autism came on. My mother listened and started to say, wow CJ6 does this and CJ6 does that. She mentioned it to me, and I quickly slammed down the phone. How could she think that there was something wrong with my perfect beautiful baby boy!? On another day, and another phone conversation, my mother claimed that she could not make eye contact with CJ6. I retorted back that she needed to get down on the ground and play with him. Of course, my mother was 74 at the time and had severe back issues. Getting down on the ground was out of the question. Little did I know that I had been doing Floortime technique with CJ6. I was now becoming angry and hurt. I agreed that CJ6 had feeding issues and was able to accept the idea of a sensory processing issue. My mother suggested that I have Early Intervention check him out and let them decide if he had a delay or not. I agreed since the evaluations were free of charge.
Since we lived in NY, Early Intervention only runs up to age 3 and after age 3, the school district is responsible for the evaluations. Since CJ6 was 4 months shy of 3, a representative from early intervention told me to wait until he turned 3 and have the district evaluate him since they would be doing all their own evaluations anyways. Can you believe that!!! This women wanted me to wait during the child's most critical window of recovery!!!
I also needed CJ6 to have a doctor's referral. Since he was not yet 3 and had not been sick, we did not have a reason to see the doctor. I was told that I would need to pay $300 to have my son's paperwork filled out. This was incredulous! Persistence is the name of the game, so I called back, and got a different secretary, who very nicely filled out the paperwork free of charge. This is was the beginning of being a squeaky wheel!
In the meantime, as the 6 month window of Early Intervention evaluations took place, my mother talked to a friend who happened to be an OT and she suggested that I read "The Out-of-Sync Child" by Carol Kranowitz. This book made sense to me. Charlie had oral hypersensitivity, as well as tactile sensitivities. I had never realized that when he tripped at the beach or on the playground or at the Easter egg hunt, that his skydiving posture of immobilization was due to a hyperprocessing of tactile sensations. Wow, this lady made sense, so I googled her and found out that she was presenting in NY. I immediately signed up for the conference. I still did not believe that were dealing with autism. Sensory processing was a much nicer way to ease into it!
I need to take my sons on another medical roadtrip tomorrow, so I will continue my sons' history later in the week.
I also have a 2 year old son, TR2. CJ6's younger brother has great joint attention and social skills for now, but has many worrisome red flags. TR2 has a complex medical history and his lab results suggest that he should be on the spectrum, but we are doing our utmost to prevent that from happening!
I will begin my story back in August of 2003, when CJ6 was born. We were anxiously awaiting the birth of our firstborn son. The pregnancy was uneventful, even though I had gained 56 lbs. A few days before the due date, the obstetrician measured my belly and was concerned that the child might be 11 lbs. Despite having been a 10lb 9 oz baby myself, I was horrified by the prospect of delivering a football player. The OB suggested that we do an induction the day before the actual due date. At that point in the pregnancy, I was sooooo uncomfortable that I was totally psyched to have it end! When I arrived at the hospital at the scheduled time, I was already having mild contractions and I was dilated 4cm. Theoretically, I could have waited a little longer, but they began me on a pitocin drip at 6am. Since this was my first child, I had no reference, but I thought that the contractions were very strong and asked for an epidural at 7:45am. Epidural can slow down labor, but I did not care because the pitocin was speeding it up. At some point, the fetal heart monitor began to drop, and the nurses rushed into the room. They turned me on my side and rocked me violently. CJ6's heartrate jumped backup. I was stunned and inquired about the incident. I was told that the baby sometimes grabs the umbilical cord. What? Are you serious! There is something inherently wrong if the child is choking themselves in utero. Survival of the fittest came to mind and I thought that if a child is grabbing their own lifeline, then maybe they were never intended to survive. At noon, I was fully dilated and began pushing. The contractions were happening so quickly that it did not give Cj6's head a chance to turn, so he presented "sunnyside up". By 12:45pm, CJ6 had arrived into this world. He scored a 9-9 on his apgar test and after he was swaddled, he immediately latched on. Both my husband and I were amazed that the delivery went so smoothly since our childbirth class informed us of so many horror stories. 30minutes after CJ6 was born, his face turned blue. I panicked, since we had a family history of heart defects. Once we unwrapped him from the swaddle, we realized that the rest of his body was pink therefore his heart was fine. His face turned blue because it had been bruised by my pelvis during the strong pitocin contractions. For the next 2 weeks, his face remained swollen and we could not see his eyes.
I exclusively breastfed CJ6 but at 2 weeks old, I gave him a bottle of Similac. My milk production did not seem to be keeping up with his demands. Occasionally, I would give a supplemental bottle, but it became more frequent around 4 weeks of age, when he broke out in a rash. I was told it was eczema and to treat it with Dove soap. There was no mention that eczema might be related to food allergies. At 6 weeks of age, he had such a severe case of cradle cap that we were sent to the dermatologist because CJ6's eyes were shut closed for 2 days. The dermatologist did mention that cradle cap is caused by the body's hyper response to yeast. This information was somewhat interesting since I was a biology teacher, but in reality, I only cared that my son was getting better when we used the topical steroid oil! For the next 2 months, CJ6 was colicky. The pediatrician placated me, a first time mom, and claimed that 3-4 hours of ear curling screams was typical. Only in retrospect did I figure out that it was occurring during the supplemental feedings. We tried all brands and types of formulas. I tried eliminating gassy vegetables such as broccoli and cauliflower from my diet. We even tried gas drops, but nothing seemed to help. After Halloween, CJ6 broke out in bumps. The pediatrician thought that it might be from eating the chocolate and to eliminate it from my diet. Recently, we discovered that CJ6 is IgE allergic to peanuts. Thinking back to that Halloween, I realized that I ate a lot of the coveted Reese's peanut butter cups.
At first glance, all developmental milestones seemed to be met. CJ6 sat and rolled over at the right times. He started to sleep through the night at 4 months old. He began army man crawling at 7 months, but never achieved the hand over hand method before he began to walk at 10 months. By 11 months, he was running and he never looked back. Crawling was so inefficient, and I didn't dwell on it because I was doing my earnest to keep pace with his running.
It was at this same time, that we moved to NY state. I needed to find a new pediatrician as well as a daycare provider because I needed to go back to work for financial reasons. I was terrified to leave my child with a person I did not know well, and focused on interviewing childcare personnel. Since I quickly needed to make a 12 month well visit, I randomly picked a pediatrician from a large practice because they offered late night and weekend hours. I had obtained a copy of CJ6's medical records from the previous pediatrician and I brought them with me to the 12 month well visit (2 days after his first birthday). I took a picture of him eating cake at his birthday party, but after this well visit we started to see feeding issues arise. Only now, have I realized that the new pediatrician gave CJ6 an extra 4th dose of Hep B which he should never have gotten. Another interesting point to make is that CJ6 does not make Hep B antibodies even after the extra shot. During my pregnancy, the OB checked my titers, and I don't make antibodies to Hep B either. I had a series of 3 Hep B shots when I was in college. Even TR2 does not make Hep B antibodies after having had 3 booster shots.
At 14 months, I recorded that CJ6 said his first word. It was "tickle". We used to tickle him into fits of giggles, holding back until he said the word. Now, I know that this is actually an ABA technique. Individual words followed, and at the 18month well baby visit, I was asked if he knew 50 words. Of course he knew 50 words, he could count to 20 , so that was at least 20 words right there and he could state every letter of the alphabet, so that was another 26 words. I was not asked if he was using words in a meaningful purposeful way. I was not asked if he pointed or would drag me to an interesting object. I was not asked if he would spontaneous hug me. I was not asked the right questions !! I was also back at work, and by moving, we had lost contact with other children that were the same age as CJ6. I was isolated in my own little world with no one to compare CJ6 against. This existence was short lived bliss. No one had applied the word "autism" to our family.
CJ6's feeding issues were not little issues in my mind. He would not feed himself, but was fine with me scooping up baby food. He would only pick up certain dry foods. He would forcibly gag and puke on both of us if he did not want to eat. Feeding would end with both of us taking baths! At first, I thought that this child was stubborn and I had met my match. Then I began to think of metabolic reasons for not eating certain foods. As a biology teacher, I was constantly lecturing about metabolic and genetic diseases such as PKU and fragile X. At the 2 year well visit, we met with another pediatrician in the same practice, and I mentioned my concerns. I was afraid that we missed a metabolic disease in the newborn screen when we moved states. PA only required 10 tests and NY had just mandated a new law with 41 different tests. I also suggested the possibility of food allergies, but was told that he was growing so I should not be concerned about the picky eating habits.
6 months later, my mother was watching television, and an excerpt about autism came on. My mother listened and started to say, wow CJ6 does this and CJ6 does that. She mentioned it to me, and I quickly slammed down the phone. How could she think that there was something wrong with my perfect beautiful baby boy!? On another day, and another phone conversation, my mother claimed that she could not make eye contact with CJ6. I retorted back that she needed to get down on the ground and play with him. Of course, my mother was 74 at the time and had severe back issues. Getting down on the ground was out of the question. Little did I know that I had been doing Floortime technique with CJ6. I was now becoming angry and hurt. I agreed that CJ6 had feeding issues and was able to accept the idea of a sensory processing issue. My mother suggested that I have Early Intervention check him out and let them decide if he had a delay or not. I agreed since the evaluations were free of charge.
Since we lived in NY, Early Intervention only runs up to age 3 and after age 3, the school district is responsible for the evaluations. Since CJ6 was 4 months shy of 3, a representative from early intervention told me to wait until he turned 3 and have the district evaluate him since they would be doing all their own evaluations anyways. Can you believe that!!! This women wanted me to wait during the child's most critical window of recovery!!!
I also needed CJ6 to have a doctor's referral. Since he was not yet 3 and had not been sick, we did not have a reason to see the doctor. I was told that I would need to pay $300 to have my son's paperwork filled out. This was incredulous! Persistence is the name of the game, so I called back, and got a different secretary, who very nicely filled out the paperwork free of charge. This is was the beginning of being a squeaky wheel!
In the meantime, as the 6 month window of Early Intervention evaluations took place, my mother talked to a friend who happened to be an OT and she suggested that I read "The Out-of-Sync Child" by Carol Kranowitz. This book made sense to me. Charlie had oral hypersensitivity, as well as tactile sensitivities. I had never realized that when he tripped at the beach or on the playground or at the Easter egg hunt, that his skydiving posture of immobilization was due to a hyperprocessing of tactile sensations. Wow, this lady made sense, so I googled her and found out that she was presenting in NY. I immediately signed up for the conference. I still did not believe that were dealing with autism. Sensory processing was a much nicer way to ease into it!
I need to take my sons on another medical roadtrip tomorrow, so I will continue my sons' history later in the week.
Saturday, November 1, 2008
Halloween 2008 by Rachel
Happy Halloween!
We had a pretty good Halloween this year. I wasn't sure if J would want to wear the costume and since he can't eat the candy it's a bummer. His preschool dressed up on Thursday, 10/30 but J was home sick from school. Friday, he wanted to go over our neighbors so I said let's get dressed in our costume and he did (it was a skeleton costume w/ bones on a black sweatsuit so it's about as comfortable as it gets). We wore it over to the neighbors that he loves - and trick or treated there. Then we went to one other neighbor and J did not want to interact with them at all - which is fine - he doesn't really know them.
Then we came home and passed out candy and he loved that! Everytime the doorbell rang he ran to it and wanted to pass out the candy. I think he finally put it all together that you dress up, go to other people's houses, say trick or treat and get candy in your bag.
This morning he woke up and said "put our costumes on and go trick or treating". I said "no, we have to wait until next year". Luckily, Kirsten is have her annual Halloween party today so J can wear his costume again today.
We had a pretty good Halloween this year. I wasn't sure if J would want to wear the costume and since he can't eat the candy it's a bummer. His preschool dressed up on Thursday, 10/30 but J was home sick from school. Friday, he wanted to go over our neighbors so I said let's get dressed in our costume and he did (it was a skeleton costume w/ bones on a black sweatsuit so it's about as comfortable as it gets). We wore it over to the neighbors that he loves - and trick or treated there. Then we went to one other neighbor and J did not want to interact with them at all - which is fine - he doesn't really know them.
Then we came home and passed out candy and he loved that! Everytime the doorbell rang he ran to it and wanted to pass out the candy. I think he finally put it all together that you dress up, go to other people's houses, say trick or treat and get candy in your bag.
This morning he woke up and said "put our costumes on and go trick or treating". I said "no, we have to wait until next year". Luckily, Kirsten is have her annual Halloween party today so J can wear his costume again today.
Subscribe to:
Posts (Atom)