We have had an awesome weekend. Honestly, J has had the best few days in a row in a long time. He just was so good with the usual things that put him over into tantrum land (i.e. doing anything he doesn't want to do, leaving places he is having fun at, not getting something he wants etc.)
I have started to really tell him the "plan" each time we are going somewhere and what the "rules" are (which is really what I expect of him and what is acceptable and unacceptable behavoir). It seems to work and he can repeat most of it back to me when I ask him to "repeat what I said" so I know it has sunk in.
I can't even articulate the relief I feel right now...
But as usual I wonder why - is it the supplements which we have been back on pretty steadily the last week (fish oil with coq10, 2 methyaids, probiotic - twice a day, enzyme at each meal, acetyl l-carnitine, l-carnitine). Plus, the mb12 shots every 3 days. Or is it the new behavior plan. Also, he is taking claritin for allergies for a week and a 1/2. Who knows?
This week we are going to meet with a floortime therapist on Friday. Floortime is a therapy that starts with the child playing and the therapist builds off of what the child is doing. It's something that J hasn't done yet - it's like the complete opposite for ABA therapy which we have done for 2 years. It's time to switch it up some.
June 9th is our meeting with Dr. Mumper in VA - a new DAN! dr. I am looking forward to that.
Off I go to enjoy the rest of a great weekend!!
Sunday, May 24, 2009
Wednesday, May 13, 2009
JG's 5th Birthday by Rachel
I can't believe my little guy is turning 5 this weekend! It makes me so happy to see how far he has come and in the same breathe I thought he would be recovered by 5. As always with autism every milestone brings a mixed bag of emotions with it.
But I am really excited about this birthday b/c he is really into it this year. He loves toys! Specifically he loves knights, pirates and princes (really anything that can duel with swords). So it has been fun picking out his toys. I just wrapped them all and I cannot wait to see his face when he opens in them on Saturday. He is not going to know what to do with himself!
He doesn't really understand that the party is this weekend and asks every morning if it's his party today :) My sweet 5 year old boy.
But I am really excited about this birthday b/c he is really into it this year. He loves toys! Specifically he loves knights, pirates and princes (really anything that can duel with swords). So it has been fun picking out his toys. I just wrapped them all and I cannot wait to see his face when he opens in them on Saturday. He is not going to know what to do with himself!
He doesn't really understand that the party is this weekend and asks every morning if it's his party today :) My sweet 5 year old boy.
Monday, April 20, 2009
Summer Challenges by Rachel
I am trying to decide what we should tackle this summer. I would like to teach JG to swallow pills since that would make taking his supplements 100% easier. I also would like to implement the SCD (specific carb diet) to see if that helps his yeast.
I am not even sure how to get him to take pills since he has such a strong gag reflex. It is so hard to explain to him that if he took pills he wouldn't have to drink all his supplements.
The SCD is extremely limiting and he would not be able to have his beloved french fries :) Which is good since they are not good for him.
Decisions, decisions....
I am not even sure how to get him to take pills since he has such a strong gag reflex. It is so hard to explain to him that if he took pills he wouldn't have to drink all his supplements.
The SCD is extremely limiting and he would not be able to have his beloved french fries :) Which is good since they are not good for him.
Decisions, decisions....
Wednesday, April 1, 2009
Tonsils/Adnoids by Rachel
J has had 2 double ear infections this winter. Last winter he had 3 cases of strep throat (he and I passed it back and forth all winter). Before that he had an ear infection and sore throat here and there but nothing chronic.
His Ped suggested we go see an ENT (ear, nose and throat) doctor to get their opinion on whether or not he needs ear tubes or his tonsils out. Well the doctor said that J has a level 3 (on a scale of 1-4) size tonsils (and that is without him being sick). A level 4 size is when the tonsils actually touch. Also, J is a mouth breather and snores at night which affects his teeth and allows a lot of germs in (your nose has nose hairs to filter out the germs when you breathe). With all that said the dr has suggested we take out his tonsils and adenoids.
I have always had strep throat and large tonsils too and I wish they would have taken mine out as a child. So, I was 100% behind this idea. I am worried about the anesthesia.
I posted on a message board about it and got a response that was very disturbing about a NT child who was fine before the surgery and after the surgery went crazy. So, now I am freaking out about it.
We are going to talk to his Ped on Sat. and talk with the ENT again. I am also going to call another ENT for a second opinion.
I don't want to ever put J in harms way but what if this really helps him?
His Ped suggested we go see an ENT (ear, nose and throat) doctor to get their opinion on whether or not he needs ear tubes or his tonsils out. Well the doctor said that J has a level 3 (on a scale of 1-4) size tonsils (and that is without him being sick). A level 4 size is when the tonsils actually touch. Also, J is a mouth breather and snores at night which affects his teeth and allows a lot of germs in (your nose has nose hairs to filter out the germs when you breathe). With all that said the dr has suggested we take out his tonsils and adenoids.
I have always had strep throat and large tonsils too and I wish they would have taken mine out as a child. So, I was 100% behind this idea. I am worried about the anesthesia.
I posted on a message board about it and got a response that was very disturbing about a NT child who was fine before the surgery and after the surgery went crazy. So, now I am freaking out about it.
We are going to talk to his Ped on Sat. and talk with the ENT again. I am also going to call another ENT for a second opinion.
I don't want to ever put J in harms way but what if this really helps him?
Saturday, February 28, 2009
J Update by Rachel
Well we are finally coming off of a 3 week family cold fest. J started off with a double ear infection and a sore throat. Then JL and I got something with congestion, cough and fever. We are finally all on the mend!
J didn't have any supplements for at least a week. It made for a rough few weeks with him just feeling awful from being sick and not having any supplements. Plus, he was on a antibiotics (I did give him probiotics to counteract it but that was it).
We made an appt with a new DAN! Dr. Mumper in Lynchburg, VA. I cancelled the appt with Dr. Compain in NY b/c of weather 3 times. Obviously, it was just not meant to be. I need a DAN! on our team though. I just don't have the knowledge or confidence to do this on my own.
We go on March 10th for a meeting about public Kindergarten next year. We didn't get into the school I really wanted for private K for him (they are filled). There are 2 that I need to follow-up with (TFT and COA) and see if they are a fit. The good news is that his preschool might be having a camp this summer - which would be great so I could work. Also, he wouldn't have to go somewhere he didn't know for camp. This would be their first time holding a camp so they are still working out the kinks.
Kindergarten right now is a priority since I need to have that ironed out. If he goes to K from 9-3 I can take on a new position at work. I am not sure how we feel about sending him to public K vs. private K. Private K is expensive but it will be full day plus he then can start public school in either Kindergarten again or 1st grade. Most importantly, Private K will mean he will get the same therapies through the county for an extra year. Public K means he will not get the services he gets now and there are no backsies with public K (he could repeat it but I would rather him not).
5 years old is right around the corner for J. I can't believe he such a big boy. It makes me sad. First of all, I thought we would have recovered him by now when he got his dx at 3. Secondly, I thought we would have another child - a sibling for J. Plus, the developmental difference between a NT 5 yr old and J is pretty visible now. At 3 and even 4 there is such a wide range of developments that you could squeak by without really noticing. Now, the kids are getting older and it's more obvious to their peers that there is a difference.
I heard this quote the other day:
"For good or bad everything is always changing".
So true.
J didn't have any supplements for at least a week. It made for a rough few weeks with him just feeling awful from being sick and not having any supplements. Plus, he was on a antibiotics (I did give him probiotics to counteract it but that was it).
We made an appt with a new DAN! Dr. Mumper in Lynchburg, VA. I cancelled the appt with Dr. Compain in NY b/c of weather 3 times. Obviously, it was just not meant to be. I need a DAN! on our team though. I just don't have the knowledge or confidence to do this on my own.
We go on March 10th for a meeting about public Kindergarten next year. We didn't get into the school I really wanted for private K for him (they are filled). There are 2 that I need to follow-up with (TFT and COA) and see if they are a fit. The good news is that his preschool might be having a camp this summer - which would be great so I could work. Also, he wouldn't have to go somewhere he didn't know for camp. This would be their first time holding a camp so they are still working out the kinks.
Kindergarten right now is a priority since I need to have that ironed out. If he goes to K from 9-3 I can take on a new position at work. I am not sure how we feel about sending him to public K vs. private K. Private K is expensive but it will be full day plus he then can start public school in either Kindergarten again or 1st grade. Most importantly, Private K will mean he will get the same therapies through the county for an extra year. Public K means he will not get the services he gets now and there are no backsies with public K (he could repeat it but I would rather him not).
5 years old is right around the corner for J. I can't believe he such a big boy. It makes me sad. First of all, I thought we would have recovered him by now when he got his dx at 3. Secondly, I thought we would have another child - a sibling for J. Plus, the developmental difference between a NT 5 yr old and J is pretty visible now. At 3 and even 4 there is such a wide range of developments that you could squeak by without really noticing. Now, the kids are getting older and it's more obvious to their peers that there is a difference.
I heard this quote the other day:
"For good or bad everything is always changing".
So true.
Friday, February 6, 2009
Turning 5 is stressing me out! by Kirsten
So, JC will be turning 5 in a few months. I can't believe it! I feel like he is still my baby. My husband told me (in a nice way) this morning that I need to stop babying him, but I can't! I think that is just how I am...I will probably be one of those moms cutting up food for my kids when they are 20:)
With turning 5 comes some schooling decisions. Here is the potential dilemma. We want him to stay in his current school (which is a typical preschool/daycare). They have a full-time private K program. Ideally, he would go to their K program & then we would possibly send him to K again the following year. We really do think that he needs that 'growth' year in there. Of course with the hopes that one more year will get him closer to his peers socially.
The problems are:
1. He is extremely 'smart' - not that this is a problem in itself, but he already knows all of the academics for K (and for 1st & 2nd grade, for that matter).
2. It is still up in the air about whether the IU will be providing private K services next year. Apparently this is a new proposal (to stop the IU from providing) & it is not decided yet. I think that this is a state thing.
3. We can't really afford it.
We took JC for the private speech eval. I haven't gotten the written report yet, but it appears that he does NOT have any speech delay. For some areas he tested older than his age & others he was on target. And this was with him purposely giving wrong answers or saying "I don't know" when he really did know (this is one of his 'things' that he does). However, the SLP did suggest she thought he had major focus and attending issues. ADHD here we come???
She also suggested the growth year for JC & made a great point that academics can always be supplemented, but a social skills deficit is harder to handle. She said that it starts to become more apparent from 3rd-5th grade than it would earlier. Giving him that extra year would at least give him a fighting chance.
Otherwise, the updates aren't huge here....just plugging away. I am looking into some new supps & more tests. Got on the waiting list for the GI doc in Boston. He is my greatest hope in the constipation battle right now!
With turning 5 comes some schooling decisions. Here is the potential dilemma. We want him to stay in his current school (which is a typical preschool/daycare). They have a full-time private K program. Ideally, he would go to their K program & then we would possibly send him to K again the following year. We really do think that he needs that 'growth' year in there. Of course with the hopes that one more year will get him closer to his peers socially.
The problems are:
1. He is extremely 'smart' - not that this is a problem in itself, but he already knows all of the academics for K (and for 1st & 2nd grade, for that matter).
2. It is still up in the air about whether the IU will be providing private K services next year. Apparently this is a new proposal (to stop the IU from providing) & it is not decided yet. I think that this is a state thing.
3. We can't really afford it.
We took JC for the private speech eval. I haven't gotten the written report yet, but it appears that he does NOT have any speech delay. For some areas he tested older than his age & others he was on target. And this was with him purposely giving wrong answers or saying "I don't know" when he really did know (this is one of his 'things' that he does). However, the SLP did suggest she thought he had major focus and attending issues. ADHD here we come???
She also suggested the growth year for JC & made a great point that academics can always be supplemented, but a social skills deficit is harder to handle. She said that it starts to become more apparent from 3rd-5th grade than it would earlier. Giving him that extra year would at least give him a fighting chance.
Otherwise, the updates aren't huge here....just plugging away. I am looking into some new supps & more tests. Got on the waiting list for the GI doc in Boston. He is my greatest hope in the constipation battle right now!
I agree!
I have to make a separate post here instead of ditto-ing Rachel in a comment:) Sue DOES Rock!!! Can I be her when I grow up? Sue, you are one of the smartest, strongest, most amazing women I have ever known. I so admire your dedication to your kids & your drive to heal them. I just know you will. I feel that in my bones. My one wish for you is to make sure you take care of YOU also. I know that it total Oprah-style goofy talk, but it's true. You are amazing...now go get a pedicure:):):) Love ya!
Tuesday, February 3, 2009
Sue Rocks!
Sue gave a presentation on Nutrition and Leaky Gut last night for a local Autism Support group we all belong too. It was awesome! She is a true example of what a motivated mother/woman can do to change the hand she is dealt with in life. I am so proud to know her and to have her as my friend. I felt like she was a rockstar up there last night and I was a groupie :)
Way to represent the mother-warriors!
Way to represent the mother-warriors!
Wednesday, January 28, 2009
Food by Rachel
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.
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.
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.
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