J did feeding therapy and has done AWESOME with eating. We are stuck in a rut right now with eating the samethings over and over. Also, I have let J have Ian's ABC french fries at least with one meal a day. He also would like to have a cereal bar and bananas for breakfast. I would say 5 out of 7 days I allow this. I need to get back on track with making new foods and not allowing him to get into a routine with certains foods.
Also, I feel like we should try the SCD (specific carb diet) which is eating only simple carbs. Sue has seen big gains with her son since implementing it and I have heard other parents say the same thing. My probably with this is that there will be no potatoes, cereal bars, tings, gummie bears, pasta, pizza, ketschup, sauce, bananas, cookies/cakes, peanut butter, butter etc. All this stuff is bad for him anyway but what am I going give him for snacks at school? What about his treat for taking his supplements? Basically all he will be able to eat is nuts, certain fruits and veggies, meats, chicken, fish. It is so restrictive.
It is just so overwhelming for me to think about implementing a new diet for him. Then I feel awful b/c am I holding him back from recovering b/c I don't want to try a new diet? The GFCF diet is already limiting a lot of food for him. J just had a meltdown b/c he couldn't have a grilled cheese sandwich the other night which breaks my heart to see. He does have an allergy to gluten and caesin (IGG allergy that we found out through a blood test) so he can't have that which makes me feel less guilty to withold those foods from him - since I know they make him physically sick.
Should I wait until the summer to try the SCD diet so he will be out of school? Will it make any difference at all? I just don't know.
Wednesday, January 28, 2009
Thursday, January 22, 2009
Feeling the Love by Rachel
Today has been a great day! J was falling asleep for a much needed nap and I was looking at him and got choked up. The immense love I feel for him is so overwhelming sometimes. He means everything to both JL and I. Here are some of the best things about J:
- He is so funny - he really has a quick wit and sometimes just says things that are hysterical. Example (not appropriate but whatever): He calls my breasts "boots" and one day I was laying down on the floor and he said "Mommy where did your boots go"
- He is beautiful - with his dark hair and eyes and the longest eyelashes ever.
- He has the best hands,feet, belly and bum. I could eat them up.
- He is sweet and compassionate. He always asks if we are ok and wants to give us a spiderman bandaid.
- He is strong and athletic. Loves to run, climb, jump and swim.
- He is truly happy. He has this his awesome belly laugh that just makes you smile.
- He surprises me all the time. Just when I think I know how he is going to react to something he surpises me.
- He loves other people and seeks them out.
- His whole face lights up when he is excited. His eyes actually sparkle.
Even if we don't recover J - he still is a happy little guy and he is loved by so many people. Don't think I am still not going to fight autism until my last breath but I have to remember J is happy and that is what matters most.
- He is so funny - he really has a quick wit and sometimes just says things that are hysterical. Example (not appropriate but whatever): He calls my breasts "boots" and one day I was laying down on the floor and he said "Mommy where did your boots go"
- He is beautiful - with his dark hair and eyes and the longest eyelashes ever.
- He has the best hands,feet, belly and bum. I could eat them up.
- He is sweet and compassionate. He always asks if we are ok and wants to give us a spiderman bandaid.
- He is strong and athletic. Loves to run, climb, jump and swim.
- He is truly happy. He has this his awesome belly laugh that just makes you smile.
- He surprises me all the time. Just when I think I know how he is going to react to something he surpises me.
- He loves other people and seeks them out.
- His whole face lights up when he is excited. His eyes actually sparkle.
Even if we don't recover J - he still is a happy little guy and he is loved by so many people. Don't think I am still not going to fight autism until my last breath but I have to remember J is happy and that is what matters most.
Monday, January 19, 2009
Basic Vent by Rachel
The older J gets the more obvious his developmental delay is. I almost don't want to respond when parents ask how old J is. When he was 3 it was ok that his speech wasn't that great but now that he is almost 5 there is a huge gap between him and a NT (neurotypical) child.
In my eyes, speech is J's biggest problem developmentally. He is still not using pronouns correctly, his receptive speech (when you ask him a question) is at a 2 yr 11 month child's level, conversational speech is lacking, his still jargons and he scripts (mostly from movies). If we can get a handle on his speech I think he will fit in more with is peers - he is a social kid by nature so if he has the speech he can interact appropriately. He is getting private speech now in addition to the speech therapy the IU gives him.
Biomedically, I think J's biggest problems are yeast, high levels of tin, stimming (not that this is biomedical but I think there are things we can do for this), some of his quirky things (smelling, itching his skin), focusing, vitamin defiencies and tantrums. I feel like there is some supplement or protocol out there that can fix these things. I do believe that the yeast, tin and food allergies make J feel like crap so he can't learn at the same rate as a NT child does.
Somedays just suck! J has been so fresh lately. It really bothers me. He can't be a fresh/rude child. It's one thing to be autistic and a whole other thing to be fresh. He can't be both. I don't know if it's a phase and all 4.5 yr olds are like this or if he is becoming a...brat (I hate to use this word but if the shoe fits). JL says I should just ignore it but I can't. It makes me angry when he says "Shoo - get away from me" or hits me or says "don't touch me". We give him time outs, tell him it isn't nice and get angry at him. Nothing seems to work. It is so frustrating for me. He doesn't do it much to others but mostly to me, JL and sometimes his grandparents. But it's not acceptable.
Please let it be a phase.
In my eyes, speech is J's biggest problem developmentally. He is still not using pronouns correctly, his receptive speech (when you ask him a question) is at a 2 yr 11 month child's level, conversational speech is lacking, his still jargons and he scripts (mostly from movies). If we can get a handle on his speech I think he will fit in more with is peers - he is a social kid by nature so if he has the speech he can interact appropriately. He is getting private speech now in addition to the speech therapy the IU gives him.
Biomedically, I think J's biggest problems are yeast, high levels of tin, stimming (not that this is biomedical but I think there are things we can do for this), some of his quirky things (smelling, itching his skin), focusing, vitamin defiencies and tantrums. I feel like there is some supplement or protocol out there that can fix these things. I do believe that the yeast, tin and food allergies make J feel like crap so he can't learn at the same rate as a NT child does.
Somedays just suck! J has been so fresh lately. It really bothers me. He can't be a fresh/rude child. It's one thing to be autistic and a whole other thing to be fresh. He can't be both. I don't know if it's a phase and all 4.5 yr olds are like this or if he is becoming a...brat (I hate to use this word but if the shoe fits). JL says I should just ignore it but I can't. It makes me angry when he says "Shoo - get away from me" or hits me or says "don't touch me". We give him time outs, tell him it isn't nice and get angry at him. Nothing seems to work. It is so frustrating for me. He doesn't do it much to others but mostly to me, JL and sometimes his grandparents. But it's not acceptable.
Please let it be a phase.
Friday, January 16, 2009
Update by Kirsten
OK, so I am a blogging slacker!!!!!! I promise I will get better (don't quote me on that:)). I will give a little update on where things stand with JC and our lovely ASD world:)
1. We had a parent/teacher (preschool) conference a couple of days ago. The good news is that it was all good news! Yay!!! I had feared that we would go through school never having a positive conference. Since my husband and I both work in public schools, we know the drill. Well, according to the teacher, JC has made a huge social leap in the past month or 2. When he started the school year, the other kids were basically pieces of furniture in the room to him. He would occasionally acknowledge them (when it suited his purposes), but was content to do his own thing. Now, only 5 months later, he has
1. run to greet kids when they come into the room
2. asked a friend to pretend with him (granted, it was some really bizarre game about making a goat colony, but who's complaining?;))
3. made silly jokes with friends
4. been asked on a playdate!
5. looked around & shown interest in what other kids are doing
6. joined kids who are playing something at a table
These may seem like small things to a parent of an NT (neurotypical) kid, but for us, this is HUGE!!!!
2. We decided to go back to our local DAN doctor for a check-in & to order more testing. We just don't have the $$$ right now to go to the big-wig DAN that we saw in July. He said he thinks that JC is going great. We are going to test some levels & do the dreaded poop test (it's soooooo gross!!!). We have poop issues too, and it really sucks! JC has been potty trained for a while, but he still goes 5-7 days between poops sometimes. I really think poop rules our world sometimes. He is a different kid when he is constipated. It sucks. So, we'll do more testing & then figure out where to go from there.
3. We are starting private OT again. We had done this in the past, but our insurance ran out. Now we switched insurance & we have unlimited sessions! Yay! We are going to the same person as Rachel and Jen (shocker!). She is awesome & hopefully this will help. Our main OT issue is self-help skills. If we can get this kid to put on his own clothes, socks & shoes, life will be great:)
4. Speech - we scheduled a private eval. It is expensive, but she is supposed to be great! We have no idea where he stands & that is what we need to know.
I will update again soon!
1. We had a parent/teacher (preschool) conference a couple of days ago. The good news is that it was all good news! Yay!!! I had feared that we would go through school never having a positive conference. Since my husband and I both work in public schools, we know the drill. Well, according to the teacher, JC has made a huge social leap in the past month or 2. When he started the school year, the other kids were basically pieces of furniture in the room to him. He would occasionally acknowledge them (when it suited his purposes), but was content to do his own thing. Now, only 5 months later, he has
1. run to greet kids when they come into the room
2. asked a friend to pretend with him (granted, it was some really bizarre game about making a goat colony, but who's complaining?;))
3. made silly jokes with friends
4. been asked on a playdate!
5. looked around & shown interest in what other kids are doing
6. joined kids who are playing something at a table
These may seem like small things to a parent of an NT (neurotypical) kid, but for us, this is HUGE!!!!
2. We decided to go back to our local DAN doctor for a check-in & to order more testing. We just don't have the $$$ right now to go to the big-wig DAN that we saw in July. He said he thinks that JC is going great. We are going to test some levels & do the dreaded poop test (it's soooooo gross!!!). We have poop issues too, and it really sucks! JC has been potty trained for a while, but he still goes 5-7 days between poops sometimes. I really think poop rules our world sometimes. He is a different kid when he is constipated. It sucks. So, we'll do more testing & then figure out where to go from there.
3. We are starting private OT again. We had done this in the past, but our insurance ran out. Now we switched insurance & we have unlimited sessions! Yay! We are going to the same person as Rachel and Jen (shocker!). She is awesome & hopefully this will help. Our main OT issue is self-help skills. If we can get this kid to put on his own clothes, socks & shoes, life will be great:)
4. Speech - we scheduled a private eval. It is expensive, but she is supposed to be great! We have no idea where he stands & that is what we need to know.
I will update again soon!
Tuesday, January 13, 2009
Drowning in Poop by Sue
Now that CJ6 is eating more fibrous and healthy foods, he is having more frequent stools. This would be great if it occurred on the potty, but he seems to be scared of it. We had potty trained CJ6 for urination over a year ago, but we have not been successful with pooping. During the summer, he was very infrequent (6-14 days without a poop). We realized that this was a medical issue that we needed to address first and that we could not address the behaviors until there was some consistency and or predictability.
Fortunately for school, he seems to poop every afternoon. I think he is holding it until he gets home from school, but somethings he comes home with a slightly soiled underwear (we call this a "dirty fart"). As soon as he gets home from school, I have him pee on the toilet. I have also been having him sit on the potty for 10 minutes (using a timer). I have found that right before he poops, he runs around doing a dance to try and hold it in. Whenever I catch him doing the dance, I whisk him to the toilet, but he runs away saying no. If I catch him before soiling and put him on the potty, it seems that his urge conviently disappears. After 20 minutes, I put him in pull ups. In his entire life, I have only ever gotten him to poop in the potty 3 times (and they were all within 5 minutes of having given him an enema). I believe that he is deathly afraid of the potty.......sort of lik e how he was with eating.
Here is an example of last week........
Wednesday:
After sitting him on the potty for 10 minutes, he proceeded to poop in his underwear. I threw out that underwear and he then pooped 4 more times in pull ups. Again, he sat for another 10 minutes and nothing, so when the 6th one arrived, I could not handle it and told Jim I had gone on strike!!!
Thursday
Of course, we had the same problem, but this time we were at CJ6's gym class!!! I was mortified as I needed to take him into the bathroom, throw out his underwear, and then retrieve a turd that had rolled out of his pants! I just wanted to sit in a corner and cry, but I had to gain my composure because I needed to be a parent to TR2.
Friday
When Cj6 came home, he had stool in his underwear. CJ6's behaviorist worked with him for the next 3 hours. We had him sit on the potty the entire time, with a couple of quick breaks to jump on the trampoline.
Saturday
While at a party, he soiled his underwear, and left a trail of feces on the floor.
Sunday
Had a dirty fart. Put him in a pull up and he stayed up late.......
Monday
CJ6 woke up with poop in his overnight pullup (I think he was retaining until he had privacy)
When he arrived home from school, he had another dirty fart and then 2 more large stools.
I feel totally overwhelmed with poop (especially since I have 2 boys with gi issues in diapers).
Fortunately for school, he seems to poop every afternoon. I think he is holding it until he gets home from school, but somethings he comes home with a slightly soiled underwear (we call this a "dirty fart"). As soon as he gets home from school, I have him pee on the toilet. I have also been having him sit on the potty for 10 minutes (using a timer). I have found that right before he poops, he runs around doing a dance to try and hold it in. Whenever I catch him doing the dance, I whisk him to the toilet, but he runs away saying no. If I catch him before soiling and put him on the potty, it seems that his urge conviently disappears. After 20 minutes, I put him in pull ups. In his entire life, I have only ever gotten him to poop in the potty 3 times (and they were all within 5 minutes of having given him an enema). I believe that he is deathly afraid of the potty.......sort of lik e how he was with eating.
Here is an example of last week........
Wednesday:
After sitting him on the potty for 10 minutes, he proceeded to poop in his underwear. I threw out that underwear and he then pooped 4 more times in pull ups. Again, he sat for another 10 minutes and nothing, so when the 6th one arrived, I could not handle it and told Jim I had gone on strike!!!
Thursday
Of course, we had the same problem, but this time we were at CJ6's gym class!!! I was mortified as I needed to take him into the bathroom, throw out his underwear, and then retrieve a turd that had rolled out of his pants! I just wanted to sit in a corner and cry, but I had to gain my composure because I needed to be a parent to TR2.
Friday
When Cj6 came home, he had stool in his underwear. CJ6's behaviorist worked with him for the next 3 hours. We had him sit on the potty the entire time, with a couple of quick breaks to jump on the trampoline.
Saturday
While at a party, he soiled his underwear, and left a trail of feces on the floor.
Sunday
Had a dirty fart. Put him in a pull up and he stayed up late.......
Monday
CJ6 woke up with poop in his overnight pullup (I think he was retaining until he had privacy)
When he arrived home from school, he had another dirty fart and then 2 more large stools.
I feel totally overwhelmed with poop (especially since I have 2 boys with gi issues in diapers).
Thursday, January 8, 2009
Feeding, Pooping and Imaginative Play by Sue
Feeding is going very well. CJ6 is taking larger portions and more variety. I find that if I cut the food into larger chunks, he takes more volume, but I have to be careful not to make the chunks too large. As for variety, he ate homemade pear gelatin last week and honeydew melon this week. There is nothing besides celery that he truly does not like. I am soooo proud of him!! Also, when we went up to Vermont for Christmas week with friends, he immediately ate the food placed in front of him without prompts or protocol. I would turn around and see it being inhaled! Of course, we are back to protocol this week, but I was very impressed and view that as a positive sign.
All I seem to be doing is shopping for organic foods and cooking!!! I cooked carrots, caulifour, chicken, pearsauce, brussel sprouts and yogurt yesterday. I used the blender so much yesterday that I actually burned out the rotating device on my Kitchenaid blender and had to got out and buy a new blender at 10pm last night. Making my own SCD legal almond yogurt is actually very easy.
Now that we have the eating down, we need to work on the pooping thing. Of course, now that CJ6 is eating so many healthy foods with wonderful fiber, we are having multiple poops each day. It would be great if CJ6 were not afraid of the toilet!!!! Yesterday I sat himon the potty for 20 minutes, only to have him get off and poop. I threw out that pair of underwear only to have him poop 4 more times. I was totally pissed by 8pm!!!!
On another note, we are seeing huge cognitive burst and CJ6 has just started imaginative play. This is not something that can be taught by a therapist. It is a developmental milestone and that is amazing that he has finally started doing this. I t could be because his brain and mitochondria are finally getting glucose or it could be because of the chlorella and cilantro combo. We only started to do that 4 weeks ago and began seeing imaginative play 2 weeks ago.....hmmm.
All I seem to be doing is shopping for organic foods and cooking!!! I cooked carrots, caulifour, chicken, pearsauce, brussel sprouts and yogurt yesterday. I used the blender so much yesterday that I actually burned out the rotating device on my Kitchenaid blender and had to got out and buy a new blender at 10pm last night. Making my own SCD legal almond yogurt is actually very easy.
Now that we have the eating down, we need to work on the pooping thing. Of course, now that CJ6 is eating so many healthy foods with wonderful fiber, we are having multiple poops each day. It would be great if CJ6 were not afraid of the toilet!!!! Yesterday I sat himon the potty for 20 minutes, only to have him get off and poop. I threw out that pair of underwear only to have him poop 4 more times. I was totally pissed by 8pm!!!!
On another note, we are seeing huge cognitive burst and CJ6 has just started imaginative play. This is not something that can be taught by a therapist. It is a developmental milestone and that is amazing that he has finally started doing this. I t could be because his brain and mitochondria are finally getting glucose or it could be because of the chlorella and cilantro combo. We only started to do that 4 weeks ago and began seeing imaginative play 2 weeks ago.....hmmm.
Tuesday, January 6, 2009
Utter meltdown by Rachel
I just got back from dropping J off at school. He usually runs into school and is so happy to be there. Today he had a complete meltdown/tantrum b/c he wanted to go into another classroom then the one the kids start out in. He was crying, throwing himself on the floor, hitting me and yelling. After about 15 minutes I calmed him down enough for the teacher to distract him so I could leave.
Obviously, I need to give him the supplements today. I think this is the longest he has gone w/o them unless he has been sick (then I usually don't give them to him or I only give him a few). It's only been 3 days (Saturday he threw them up) without them.
What an awful way to start off the day - for both of us.
Obviously, I need to give him the supplements today. I think this is the longest he has gone w/o them unless he has been sick (then I usually don't give them to him or I only give him a few). It's only been 3 days (Saturday he threw them up) without them.
What an awful way to start off the day - for both of us.
Random 2009 Items by Rachel
We will be taking J to see a new DAN! dr in NY on Jan. 12th. I am looking forward to this b/c we haven't been happy with our other DAN! dr in FL. I hope this new dr will shed some light on somethings for us.
Here are a few things I want to discuss:
1. Amount/consistency of J's urine - I know gross but true. He pees a ton and it's very clear. Sue brought up that red blood cells are what color the urine yellow and J has low hemoglobin so is that a problem? Also, B vitamins will color pee so is he getting enough B vitamins? He gets the MB12 shot and B6 from fish oil.
2. Do we need to switch up his supplements? Right now he takes:
1 capsule Taurine
2 capsules Probiotics
1 capsule Acetyl L-Carnitine
1 capsule L-Carnitine
2 caps. Methylaids
3/4 tsp fish oil
1 1/2 caps. Coq10 (this also has Vit. C in it)
1 Minerall
1/2 tsp Glutithione
1 cap. Vit E gamma-tocopherol
MB12 shots
Authia Cram
Epsom Salt Baths
Actually I have not given him any supp. in 3 days since we had an early appt with this new DAN! dr but had to change it due to pending weather. So, I really should start again today since the appt is now in 2 weeks.
3. Address his stimming. He really has been doing it more lately without the supp.
4. Speech is a huge issue - we are starting private speech lessons next week. I am really hoping this helps J but is there another supp that might help more then just the Methyaid which has the TMG in it.
5. Yeast - we can't seem to get a handle on this b/c as soon as we start a yeast protocol he starts regressing (tantrums, fussy, frustrated). We have tried GSE and diflucan - both affected him the same.
6. GFCF - should we stay on this diet or switch to SCD or another diet? Would it help his yeast issue?
In addition to this appt. I need to settle J's school situation.
We really need to figure out what we are going to do with J this summer and next year. Since I am working now I need to figure out a camp situation for J. I so want him to go to the same place Kirsten sends her kids b/c
1. It's a great place (as I am told by everyone) 2. They have a summer program so I would kill 2 birds with 1 stone. We have been on their waiting list for 2 years now. I call every few weeks to check and see if there is an opening but there never has been. The school said that by March they should know if they have any openings. There are 2 other private schools that I have as a back up plan. I really want to get the school situation settled asap so I don't have to worry about it any longer. It weighs on me.
Here are a few things I want to discuss:
1. Amount/consistency of J's urine - I know gross but true. He pees a ton and it's very clear. Sue brought up that red blood cells are what color the urine yellow and J has low hemoglobin so is that a problem? Also, B vitamins will color pee so is he getting enough B vitamins? He gets the MB12 shot and B6 from fish oil.
2. Do we need to switch up his supplements? Right now he takes:
1 capsule Taurine
2 capsules Probiotics
1 capsule Acetyl L-Carnitine
1 capsule L-Carnitine
2 caps. Methylaids
3/4 tsp fish oil
1 1/2 caps. Coq10 (this also has Vit. C in it)
1 Minerall
1/2 tsp Glutithione
1 cap. Vit E gamma-tocopherol
MB12 shots
Authia Cram
Epsom Salt Baths
Actually I have not given him any supp. in 3 days since we had an early appt with this new DAN! dr but had to change it due to pending weather. So, I really should start again today since the appt is now in 2 weeks.
3. Address his stimming. He really has been doing it more lately without the supp.
4. Speech is a huge issue - we are starting private speech lessons next week. I am really hoping this helps J but is there another supp that might help more then just the Methyaid which has the TMG in it.
5. Yeast - we can't seem to get a handle on this b/c as soon as we start a yeast protocol he starts regressing (tantrums, fussy, frustrated). We have tried GSE and diflucan - both affected him the same.
6. GFCF - should we stay on this diet or switch to SCD or another diet? Would it help his yeast issue?
In addition to this appt. I need to settle J's school situation.
We really need to figure out what we are going to do with J this summer and next year. Since I am working now I need to figure out a camp situation for J. I so want him to go to the same place Kirsten sends her kids b/c
1. It's a great place (as I am told by everyone) 2. They have a summer program so I would kill 2 birds with 1 stone. We have been on their waiting list for 2 years now. I call every few weeks to check and see if there is an opening but there never has been. The school said that by March they should know if they have any openings. There are 2 other private schools that I have as a back up plan. I really want to get the school situation settled asap so I don't have to worry about it any longer. It weighs on me.
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