Okay so I know it has been a while since I posted last but honestly nothing exciting has happen. We have been continuing the GSE except for when we went upstate last week I didn't give it to him while we were up there I wanted him to be as easy going as possible while we were there and he did pretty good. Next time we go I will definitely be taking gates with us so I can keep him out of the kitchen, he had 2 infractions and boy did we pay for them. Within a couple hours he was literally bouncing off the walls crazy.
Today is a new day after a long weekend so I started the GSE back up he will get his first dose at breakfast this morning at school and I will give him his second dose when he gets off the bus. I couldn't tell you if the penis playing has decreased any but boy has he been irritable! I think we are finally going through withdraws. I was hoping we wouldn't have any but I totally understand why he is having such a hard time. It takes approximately 3-4 weeks to completely rid the body of casein (milk protein) and 3-4 months for the gluten, we are at about week 3, and since none of his infractions were with casein I am confident that at this point his body is casein free thus the beginning of the withdraws. His mood has just fluctuated, little things like me shutting off the screen saver really upset him and cause meltdowns that I haven't seen in quite a while. Also being that today is a new day I decided to try some new cream I got, it is called MSM cream, aka calming cream. Basically MSM is a natural occurring source of sulfur, which most (not all, everyone is different) AI kids are deficient in. I put some on his feet and his back before I dressed him today, he wasn't thrilled at all about the whole thing but we will see how it goes, I am not expecting miracles (that isn't why I do any of this by the way) but I am hoping it will help him cope with the withdraw symptoms, I can tell that he hates to meltdown you can see it in his eyes, he doesn't like to do it and when he does he just looks at you like "can't you help me, can't you stop this" it breaks my heart, I just hold him and rock him until he settles down so I am crossing my fingers that the cream helps alleviate some of his discomfort.
A little off topic but a little on topic I plan on detoxing my body in the next couple weeks. My digestive system has not been right ever since middle school when my bff and I thought it would be "cool" to be anorexic, needless to say it was not cool and didn't last more than a couple months but it was long enough to screw with me for life so I am going to try and reset my body so I can live "normally" (if that is even possible) or at least be able to eat with out getting Ebola (thats what I call my misery) I am just waiting to start my detox plan until I start my period, I have all the PMS symptoms I just need it to start and get it over with, I am already technically now 2 days late but we aren't panicking last month was a screwed up month for me so we will see, I won't panic until after the 4th. Anyways I don't want to detox while on it because that would just be torture for Chris and I love him too much to put him through all that! Once I am done detoxing I will be giving up casein, gluten, refined sugar, caffeine of any kind, and I am going to try my hardest to avoid Chris while he is smoking (if only he'd quit) which means I can't go on the porch until the smoke clears and he won't be allowed to smoke in the car with me. We will see how everything goes I will keep everything logged and updated so I can see if I am just crazy or if it is really helping.
Monday, March 31, 2008
Tuesday, March 18, 2008
Win, Win, and Win
Okay so I have finally won some battles, it only took 5 years but I finally won some!! Okay from the beginning I went out to get food for our "special" eaters and I thought I would try a few new things.
#1 I got hamburger buns by EnerG and Chase LOVES them!! He finally will eat a peanut butter and jelly sandwich again! Which of course are his favorite.
#2 I got small travel bottles of Sunny Delight (yeah I know not the best anyways....) knowing he would probably drink them plus he has never had them before so with the addition of 6 drops of GSE (for the yeast problem I know he has) he drank the entire bottle....YAY!!! So know we are actively fighting his yeast problem and it is working we finally got our first yeasty poop today, yeah I know gross but I was thrilled.
#3 In general the diet is going great, I couldn't ask for anything more at this point.
I did order from another mom so supplements so to get those into him my mom had the great idea of getting a different flavored Sunny Delight! Perfect! Now I can get in his probiotic, calcium/magnesium and olive leaf extract. We have finally taken our first steps on our long road that we have ahead of us.
As for his behaviors at this point, since he has been home from school I haven't seen him grabbing/slapping his penis as much as yesterday (it was constant yesterday) he is still bouncing off the couch and the trampoline but it isn't as bad today. Each day is a new victory.
#1 I got hamburger buns by EnerG and Chase LOVES them!! He finally will eat a peanut butter and jelly sandwich again! Which of course are his favorite.
#2 I got small travel bottles of Sunny Delight (yeah I know not the best anyways....) knowing he would probably drink them plus he has never had them before so with the addition of 6 drops of GSE (for the yeast problem I know he has) he drank the entire bottle....YAY!!! So know we are actively fighting his yeast problem and it is working we finally got our first yeasty poop today, yeah I know gross but I was thrilled.
#3 In general the diet is going great, I couldn't ask for anything more at this point.
I did order from another mom so supplements so to get those into him my mom had the great idea of getting a different flavored Sunny Delight! Perfect! Now I can get in his probiotic, calcium/magnesium and olive leaf extract. We have finally taken our first steps on our long road that we have ahead of us.
As for his behaviors at this point, since he has been home from school I haven't seen him grabbing/slapping his penis as much as yesterday (it was constant yesterday) he is still bouncing off the couch and the trampoline but it isn't as bad today. Each day is a new victory.
Sunday, March 16, 2008
Infractions are inevidable
Well I didn't get to post yesterday due to the fact that I cleaned the entire house, mostly the upstairs it really just needed some serious organizing which is what takes the longest but it is all done and all I have left is to clean the rug in the boys room. Good thing is I have a huge box for goodwill.
So what has went on in the past couple days? Well I knew it was too good to be true, it started with him using a chair to get into the cupboards and stealing hotdog buns in the morning and ended with him stealing some cheese and tortillas while I was setting the table for dinner. So we are back at the beginning. I did start everyone on probiotics, everyone takes them fine except for Chase am I surprised? No. I bought a powder form so I can mix it in with things but I am thinking I am going to have to go a head and buy the liquid form I found, the only thing is the powder has 3 billion a serving and the powder has 5. I wish I could get him to take pills so I could get him the 50 billion which is what he really needs.
Behaviors haven't changed any, he is still jumping alot but I have got him to stay off the couch by putting the trampoline back in the living room so he will jump on that instead. He has literally rubbing his penis raw by hitting it and pulling on it so I don't know what to do about that, I was hoping the probiotics would help with the yeast, my next option is to try biotin. If that doesn't work I will try to take him into our quack dr and try to explain to him that I want him tested for yeast so I can get an antibacterial for it so we can just be done with it. I am really wishing right now I had a DAN dr.
So what has went on in the past couple days? Well I knew it was too good to be true, it started with him using a chair to get into the cupboards and stealing hotdog buns in the morning and ended with him stealing some cheese and tortillas while I was setting the table for dinner. So we are back at the beginning. I did start everyone on probiotics, everyone takes them fine except for Chase am I surprised? No. I bought a powder form so I can mix it in with things but I am thinking I am going to have to go a head and buy the liquid form I found, the only thing is the powder has 3 billion a serving and the powder has 5. I wish I could get him to take pills so I could get him the 50 billion which is what he really needs.
Behaviors haven't changed any, he is still jumping alot but I have got him to stay off the couch by putting the trampoline back in the living room so he will jump on that instead. He has literally rubbing his penis raw by hitting it and pulling on it so I don't know what to do about that, I was hoping the probiotics would help with the yeast, my next option is to try biotin. If that doesn't work I will try to take him into our quack dr and try to explain to him that I want him tested for yeast so I can get an antibacterial for it so we can just be done with it. I am really wishing right now I had a DAN dr.
Thursday, March 13, 2008
Day 6- for lack of a better title
We have a word!!!!! Chase tonight said a word and real word and I heard it with my own ears!!!!! He brought me a strip of PECS pictures with various foods on them, I asked him what he wanted and he then pointed at the taco and said "taco" I immediately started crying, I ran outside and told Chris I couldn't believe it!!! I still can't believe it!! We are on day 6 of the diet, his last infraction was 5 days ago other than that he has been perfect!!! I am so excited words can't even describe!! On another awesome note tonight I got him to drink rice milk! This is HUGE! He hasn't had any milk in 6 days I am out of juice so I figured I would give him some but not let him see my pour it, well it worked he drank it!!! His behaviors are still mostly the same, jumping on the couch, playing with himself, ect. He seems to be eating more, still mostly cereal but I am keeping as much of a variety as I possibly can. I made him some granola bars and jello tonight and he thought that was cool, especially the jello.
Now on to Miss Trinity it is harder to keep her from having infractions than Chase!! It seems like we have a few good days then all the sudden she will have stolen one of the other kids milk and is drinking it. Being that she is so young she doesn't understand that the milk makes it hard for her to breathe and makes her nose run and her chest fill up so she coughs. So far though I have been able to add eggs back into her diet as long as they are in moderation which makes baking a little bit easier for me. I also had to cancel her drs appointment tomorrow because the van is broke again, honestly it is fine with me I was going to refuse her vaccinations anyways because she still isn't feeling well and I am not going to overload her immune system, I learned that lesson the hard way.
I am going to call the drs office tomorrow to see if Calista's lab work is back, I am really anxious to see her results, almost more than I was with Chase's. Probably because I was expecting Chase to have issues with his body. Next week Spencer goes in for his lead test and I will request the same tests for him they ran on Calista, Chase and Trinity, all is fair in a family full of allergies.
I am also on the edge of my seat for the new book I bought to get here. I am just finishing Dr. Bocks book, boy do I wish I could see him and have him treat Chase, if only I lived in New York. Anyways I got a new book that is just about the different supplements that have been found to help and what symptoms they help. By the time I get that book and start it we should be on the diet for about 2 weeks, I really want to wait a full 3 weeks before starting any supplements on any of the kids for a couple reasons:
#1 it takes 3 weeks at a minimum for casein to leave the body, longer for gluten more like 3 months but I am not waiting that long
#2 by the end of 3 weeks I should have everyones test results back so I know what problems each child has and from there I can cater to their diets and add supplements as needed.
#3 I need that 3 weeks for my research time, baking time, and for any chance of Chase going through withdrawl to be over with (so far we haven't had any problems but it is ONLY day 6)
One last thought for the night. I learned tonight that one of the symptoms of yeast overload is cracking of the skin on fingers and toes. This was like a light bulb moment for me. I had a feeling that Spencer has a yeast problem. His belly is always bloated, he is the gassiest person in the world, and his stool shows signs of yeast. Add in the fact that his toes have been cracking, and not just little cracks, huge cracks in the skin on the top of his toes but they never bleed (and in my opinion are big enough that they should) I am now definately sure that he has a yeast problem. So taking care of both my yeasty beasty's is top priority on my list once we get their diets straight.
On a side note the book I am just finishing reading is:
Healing the New Childhood Epidemics; Autism, ADHD, Asthma and Allergies The Groundbreaking Program for the 4-A Disorders by Kenneth Bock and Cameron Stauth
and the one I just bought is:
Autism: Effective Biomedical Treatments (Have we done everything we can for this child? Individuality in an Epidemic) by Jon Pangborn
Now on to Miss Trinity it is harder to keep her from having infractions than Chase!! It seems like we have a few good days then all the sudden she will have stolen one of the other kids milk and is drinking it. Being that she is so young she doesn't understand that the milk makes it hard for her to breathe and makes her nose run and her chest fill up so she coughs. So far though I have been able to add eggs back into her diet as long as they are in moderation which makes baking a little bit easier for me. I also had to cancel her drs appointment tomorrow because the van is broke again, honestly it is fine with me I was going to refuse her vaccinations anyways because she still isn't feeling well and I am not going to overload her immune system, I learned that lesson the hard way.
I am going to call the drs office tomorrow to see if Calista's lab work is back, I am really anxious to see her results, almost more than I was with Chase's. Probably because I was expecting Chase to have issues with his body. Next week Spencer goes in for his lead test and I will request the same tests for him they ran on Calista, Chase and Trinity, all is fair in a family full of allergies.
I am also on the edge of my seat for the new book I bought to get here. I am just finishing Dr. Bocks book, boy do I wish I could see him and have him treat Chase, if only I lived in New York. Anyways I got a new book that is just about the different supplements that have been found to help and what symptoms they help. By the time I get that book and start it we should be on the diet for about 2 weeks, I really want to wait a full 3 weeks before starting any supplements on any of the kids for a couple reasons:
#1 it takes 3 weeks at a minimum for casein to leave the body, longer for gluten more like 3 months but I am not waiting that long
#2 by the end of 3 weeks I should have everyones test results back so I know what problems each child has and from there I can cater to their diets and add supplements as needed.
#3 I need that 3 weeks for my research time, baking time, and for any chance of Chase going through withdrawl to be over with (so far we haven't had any problems but it is ONLY day 6)
One last thought for the night. I learned tonight that one of the symptoms of yeast overload is cracking of the skin on fingers and toes. This was like a light bulb moment for me. I had a feeling that Spencer has a yeast problem. His belly is always bloated, he is the gassiest person in the world, and his stool shows signs of yeast. Add in the fact that his toes have been cracking, and not just little cracks, huge cracks in the skin on the top of his toes but they never bleed (and in my opinion are big enough that they should) I am now definately sure that he has a yeast problem. So taking care of both my yeasty beasty's is top priority on my list once we get their diets straight.
On a side note the book I am just finishing reading is:
Healing the New Childhood Epidemics; Autism, ADHD, Asthma and Allergies The Groundbreaking Program for the 4-A Disorders by Kenneth Bock and Cameron Stauth
and the one I just bought is:
Autism: Effective Biomedical Treatments (Have we done everything we can for this child? Individuality in an Epidemic) by Jon Pangborn
It's Day 5 Already!!!!
Okay so today is day 5 and we have only had 1 infraction that I know of.........yeah!!!!!! This is so cool and he is doing alot better than last time!!! I am really excited, he even seems to be eating more things, he is still limiting himself to carbs but I still think that is because he has a serious yeast issue I need to deal with, I just don't know how I am going to deal with it yet. I am excited though that things are going so well! I just hope it continues. I need to make a note of his behavior as of today, he is CONSTANTLY jumping on the couch, throwing himself on the couch and is still OBSESSED with his penis, both of these things are really driving me crazy!!
On the flip side of things I think Trinity is having a reaction to soy. She still isn't any better and she has a new rash. Friday she goes to the doctor and I plan on refusing vaccinations just until she is completely over her cold or whatever it is that is compromising her immune system. We will see how that pans out.
On yet another note I had Calista's appointment today and I got them to do blood work on her, they ordered a CBC, IgE and Pediatric RAST so I will find out if she has any issues that I need to know about, so of course I am anxious for those results. Then Spencer goes next week so I will request the same things for him, then I will know everything I can about my children, that will make me very very happy!!!
On the flip side of things I think Trinity is having a reaction to soy. She still isn't any better and she has a new rash. Friday she goes to the doctor and I plan on refusing vaccinations just until she is completely over her cold or whatever it is that is compromising her immune system. We will see how that pans out.
On yet another note I had Calista's appointment today and I got them to do blood work on her, they ordered a CBC, IgE and Pediatric RAST so I will find out if she has any issues that I need to know about, so of course I am anxious for those results. Then Spencer goes next week so I will request the same things for him, then I will know everything I can about my children, that will make me very very happy!!!
Monday, March 10, 2008
Our Weekend
Well we started on Saturday being officially gluten and casein free again. I am also adding in a few more foods he can't have so we can get rid of the yeast that I know is living in his body. Saturday went well, all he would eat was a cereal that I got and drink juice. Today on the other hand not so good. I asked Chris to put up the gate in the kitchen on his way out of the house this morning and he didn't so I woke up to Chase devoring a bag of Oreo's. Not good, so we have already had our first infraction, atleast it is early on and not like a month in that would make me really unhappy. I tried giving the GSE again but it didn't work out so I am going to have to attack the yeast a whole new way. I am thinking probiotics, I know I can find a powder I can sneak into something. I am prepared for him to starve himself thinking he is going to win this battle. Well he is not I am not going to let Autism run his life any longer, I know I can recover him and I am making it my full time job to do. I just have to make sure the school is on board I am going to write his teacher a letter tonight on the foods he can not eat according to the allergy results. We are heading into a huge fight but I am prepared this time, I also know that he weighs right now 42 pounds so I can track his weight. I think I am going to start making smoothies for snack when he gets off the bus and making him wake up in the morning and eat breakfast before school so he isn't starved all day with his limited intake at school. I will keep my journal here so I can record and keep track of his progress and inbetween everything else I am going to start researching supplements, enzymes, etc to help him with other issues including stims.
I am the Child
I AM THE CHILD
I AM THE CHILD WHO CANNOT TALK.
YOU OFTEN PITY ME, I SEE IT IN YOUR EYES.
YOU WONDER HOW MUCH I AM AWARE OF--I SEE THAT AS WELL.
I AM AWARE OF MUCH, WHETHER YOU ARE HAPPY OR SAD OR FEARFUL,
PATIENT OR IMPATIENT, FULL OF LOVE AND DESIRE, OR IF YOU ARE JUST
DOING YOUR DUTY BY ME.
I MARVEL AT YOUR FRUSTRATION, KNOWING MINE TO BE FAR GREATER,
FOR I CANNOT EXPRESS MYSELF OR MY NEEDS AS YOU DO.
YOU CANNOT CONCEIVE MY ISOLATION, SO COMPLETE IT IS AT TIMES.
I DO NOT GIFT YOU WITH CLEVER CONVERSATION,
CUTE REMARKS TO BE LAUGHED OVER AND REPEATED.
I DO NOT GIVE YOU ANSWERS TO YOUR EVERYDAY QUESTIONS, RESPONSES OVER
MY WELL-BEING,
SHARING MY NEEDS, OR COMMENTS ABOUT THE WORLD ABOUT ME.
I DO NOT GIVE YOU REWARDS AS DEFINED BY THE WORLD'S
STANDARDS--GREAT STRIDES IN DEVELOPMENT THAT YOU CAN CREDIT
YOURSELF; I DO NOT GIVE YOU UNDERSTANDING AS YOU KNOW IT.
WHAT I GIVE YOU IS SO MUCH MORE VALUABLE--I GIVE YOU INSTEAD
OPPORTUNITIES.
OPPORTUNITIES TO DISCOVER THE DEPTH OF YOUR CHARACTER, NOT MINE; THE
DEPTH OF YOUR LOVE,
YOUR COMMITMENT, YOUR PATIENCE, YOUR ABILITIES;
THE OPPORTUNITY TO EXPLORE YOUR SPIRIT MORE DEEPLY THAN YOU IMAGINED
POSSIBLE.
I DRIVE YOU FURTHER THAN YOU WOULD EVER GO ON YOUR OWN,
WORKING HARDER, SEEKING ANSWERS
TO YOUR MANY QUESTIONS WITH NO ANSWERS.
I AM THE CHILD WHO CANNOT TALK.
I AM THE WHILD WHO CANNOT WALK.
THE WORLD SEEMS TO PASS ME BY.
YOU SEE THE LONGING IN MY EYES TO GET OUT OF THIS CHAIR,
TO RUN AND PLAY LIKE OTHER CHILDREN.
THERE IS MUCH YOU TAKE FOR GRANTED.
I WANT THE TOYS ON THE SHELF, I NEED TO GO TO THE BATHROOM, OH I'VE
DROPPED MY FORK AGAIN.
I AM DEPENDENT ON YOU IN THESE WAYS.
MY GIFT TO YOU IS TO MAKE YOU MORE AWARE OF YOUR GREAT FORTUNE,
YOUR HEALTHY BACK AND LEGS, YOUR ABILITY TO DO FOR YOURSELF.
SOMETIMES PEOPLE APPEAR NOT TO NOTICE ME; I ALWAYS NOTICE THEM.
I FEEL NOT SO MUCH ENVY AS DESIRE, DESIRE TO STAND UPRIGHT,
TO PUT ONE FOOT IN FRONT OF THE OTHER, TO BE INDEPENDENT.
I GIVE YOU AWARENESS.
I AM THE CHILD WHO CANNOT WALK.
I AM THE CHILD WHO IS MENTALLY IMPAIRED.
I DON'T LEARN EASILY, IF YOU JUDGE ME BY THE WORLD'S MEASURING STICK,
WHAT I DO KNOW IS INFINITE JOY IN SIMPLE THINGS.
I AM NOT BURDENED AS YOU ARE WITH THE STRIFE'S AND CONFLICTS OF A
MORE COMPLICATED LIFE.
MY GIFT TO YOU IS TO GRANT YOU THE FREEDOM TO ENJOY THINGS AS A
CHILD,
TO TEACH YOU HOW MUCH YOUR ARMS AROUND ME MEAN, TO GIVE YOU LOVE.
I GIVE YOU THE GIFT OF SIMPLICITY.
I AM THE CHILD WHO IS MENTALLY IMPAIRED.
I AM THE DISABLED CHILD.
I AM YOUR TEACHER. IF YOU ALLOW ME,
I WILL TEACH YOU WHAT IS REALLY IMPORTANT IN LIFE.
I WILL GIVE YOU AND TEACH YOU UNCONDITIONAL LOVE.
I GIFT YOU WITH MY INNOCENT TRUST, MY DEPENDENCY UPON YOU.
I TEACH YOU ABOUT HOW PRECIOUS THIS LIFE IS AND ABOUT NOT TAKING
THINGS FOR GRANTED.
I TEACH YOU ABOUT FORGETTING YOUR OWN NEEDS AND DESIRES AND DREAMS.
I TEACH YOU GIVING.
MOST OF ALL I TEACH YOU HOPE AND FAITH.
I AM THE DISABLED CHILD.
AUTHOR UNKNOWN
I AM THE CHILD WHO CANNOT TALK.
YOU OFTEN PITY ME, I SEE IT IN YOUR EYES.
YOU WONDER HOW MUCH I AM AWARE OF--I SEE THAT AS WELL.
I AM AWARE OF MUCH, WHETHER YOU ARE HAPPY OR SAD OR FEARFUL,
PATIENT OR IMPATIENT, FULL OF LOVE AND DESIRE, OR IF YOU ARE JUST
DOING YOUR DUTY BY ME.
I MARVEL AT YOUR FRUSTRATION, KNOWING MINE TO BE FAR GREATER,
FOR I CANNOT EXPRESS MYSELF OR MY NEEDS AS YOU DO.
YOU CANNOT CONCEIVE MY ISOLATION, SO COMPLETE IT IS AT TIMES.
I DO NOT GIFT YOU WITH CLEVER CONVERSATION,
CUTE REMARKS TO BE LAUGHED OVER AND REPEATED.
I DO NOT GIVE YOU ANSWERS TO YOUR EVERYDAY QUESTIONS, RESPONSES OVER
MY WELL-BEING,
SHARING MY NEEDS, OR COMMENTS ABOUT THE WORLD ABOUT ME.
I DO NOT GIVE YOU REWARDS AS DEFINED BY THE WORLD'S
STANDARDS--GREAT STRIDES IN DEVELOPMENT THAT YOU CAN CREDIT
YOURSELF; I DO NOT GIVE YOU UNDERSTANDING AS YOU KNOW IT.
WHAT I GIVE YOU IS SO MUCH MORE VALUABLE--I GIVE YOU INSTEAD
OPPORTUNITIES.
OPPORTUNITIES TO DISCOVER THE DEPTH OF YOUR CHARACTER, NOT MINE; THE
DEPTH OF YOUR LOVE,
YOUR COMMITMENT, YOUR PATIENCE, YOUR ABILITIES;
THE OPPORTUNITY TO EXPLORE YOUR SPIRIT MORE DEEPLY THAN YOU IMAGINED
POSSIBLE.
I DRIVE YOU FURTHER THAN YOU WOULD EVER GO ON YOUR OWN,
WORKING HARDER, SEEKING ANSWERS
TO YOUR MANY QUESTIONS WITH NO ANSWERS.
I AM THE CHILD WHO CANNOT TALK.
I AM THE WHILD WHO CANNOT WALK.
THE WORLD SEEMS TO PASS ME BY.
YOU SEE THE LONGING IN MY EYES TO GET OUT OF THIS CHAIR,
TO RUN AND PLAY LIKE OTHER CHILDREN.
THERE IS MUCH YOU TAKE FOR GRANTED.
I WANT THE TOYS ON THE SHELF, I NEED TO GO TO THE BATHROOM, OH I'VE
DROPPED MY FORK AGAIN.
I AM DEPENDENT ON YOU IN THESE WAYS.
MY GIFT TO YOU IS TO MAKE YOU MORE AWARE OF YOUR GREAT FORTUNE,
YOUR HEALTHY BACK AND LEGS, YOUR ABILITY TO DO FOR YOURSELF.
SOMETIMES PEOPLE APPEAR NOT TO NOTICE ME; I ALWAYS NOTICE THEM.
I FEEL NOT SO MUCH ENVY AS DESIRE, DESIRE TO STAND UPRIGHT,
TO PUT ONE FOOT IN FRONT OF THE OTHER, TO BE INDEPENDENT.
I GIVE YOU AWARENESS.
I AM THE CHILD WHO CANNOT WALK.
I AM THE CHILD WHO IS MENTALLY IMPAIRED.
I DON'T LEARN EASILY, IF YOU JUDGE ME BY THE WORLD'S MEASURING STICK,
WHAT I DO KNOW IS INFINITE JOY IN SIMPLE THINGS.
I AM NOT BURDENED AS YOU ARE WITH THE STRIFE'S AND CONFLICTS OF A
MORE COMPLICATED LIFE.
MY GIFT TO YOU IS TO GRANT YOU THE FREEDOM TO ENJOY THINGS AS A
CHILD,
TO TEACH YOU HOW MUCH YOUR ARMS AROUND ME MEAN, TO GIVE YOU LOVE.
I GIVE YOU THE GIFT OF SIMPLICITY.
I AM THE CHILD WHO IS MENTALLY IMPAIRED.
I AM THE DISABLED CHILD.
I AM YOUR TEACHER. IF YOU ALLOW ME,
I WILL TEACH YOU WHAT IS REALLY IMPORTANT IN LIFE.
I WILL GIVE YOU AND TEACH YOU UNCONDITIONAL LOVE.
I GIFT YOU WITH MY INNOCENT TRUST, MY DEPENDENCY UPON YOU.
I TEACH YOU ABOUT HOW PRECIOUS THIS LIFE IS AND ABOUT NOT TAKING
THINGS FOR GRANTED.
I TEACH YOU ABOUT FORGETTING YOUR OWN NEEDS AND DESIRES AND DREAMS.
I TEACH YOU GIVING.
MOST OF ALL I TEACH YOU HOPE AND FAITH.
I AM THE DISABLED CHILD.
AUTHOR UNKNOWN
Friday, March 7, 2008
Starting Over....Again
We got Chase's test results back and here is what they say, not a lot of anything. I am really beginning to lose confidence in doctors, but then again what mother with an autistic child hasn't at some point in time. Basically all it really said was his levels are within the normal range so now I have to request more tests. I was advised to request the ELISA which is what I thought I was getting in the beginning but I was wrong, so I will have to start another fight and become the "crazy" mom. My decision in the end? We are going back on the GF/CF diet, everyone is. I called and made Spencer and Calista appointments for referrals to the allergist and we know that Trinity can't have wheat, eggs and casein so we are all going to go on the diet and see what happens. I know it won't hurt it is just going to be hard, but I am the adult in the situation and I should be the strong one not Chase, it is my turn to start winning some battles. I will document things as they go with everyone not just Chase. I am antispating a really bumpy ride but I am strapped in for life.
Tuesday, March 4, 2008
The Allergist
Yesterday was our allergist appointment. Now we wait. He had no reaction to any of the skin test so they ordered some labs to be run, now we wait. I am really excited to see what the results are and it already seems like it is going to take forever.
Wednesday, January 30, 2008
Update
Well I finally got a referral for an allergist/immuniologist for Chase, I got the paper work in the mail today. His first appointment is on March 3rd and is going to take 2-3 hours...yay. On the other end of our children line there is Miss Trinity. She was dx with eczema and given the pedia rast allergy test, fancy name for checking her IgE, and it came back severely allergic to casein (go figure) moderately allergic to gluten and eggs. So here we are at the beginning all over again with another child. So I have been reading about other moms who put themselves on the diet and supplements and one mom has already lost 25 pounds, well heck sign me up I am all for it!!! Maybe that is my problem my body can't handle what little I eat makes sense. I will keep posting about our journey now adding in little Miss Trinity which by the way does have a speech delay also. Off topic for a second I talked to mom T last night on the phone and we had a good conversation, one like we used to have before Chris and I had kids, it was nice I really enjoyed it, missed it actually, it was good to talk to her and I hope it continues to happen.
Monday, January 21, 2008
Horrible Mom
Day 3 and all Chase has had to eat is 2 apples, some cereal, 3 tater tots and some water. I can see he has lost weight, his cold is even worse I can't decide if I should send him to school tomorrow, I wish I could call his teacher now and ask her what she thinks. I don't know what to do about him, he is yeast free now though, funny thing is he wouldn't take his chewable probiotic so I gave them to Spencer and all that good bacteria cleared up his yeast problems too! He doesn't have a bloated belly anymore. Anyways there isn't much new to report there has been no changes in Chase since the yeast left his body, I feel like I am starving him, like I am the worst mom in the world, but everyone says to give it 3 full strict weeks and go from there so I guess it is just going to be a rough ride.
Friday, January 18, 2008
What a day...its finally over
Okay so today was Chase's first full day on the GSE. We didn't see any reaction at all and he never even pooped!!! Wondering why I made up some more GSE in juice and for some reason out of the blue it dawned on me, stir it up! DUH!!! He wasn't actually getting any of the GSE just the juice on the top! No wonder he would dump out the last swallow. I felt like an idiot! Chase 1 Me 0. So I went to Walmart and bought some suringes so I can force him to take it and know that he gets it, I also got OLE at Walmart, who'd a thought they would carry it and it was reasonably priced too, along with the Biotin so I picked both of them up. I tried to give him a chewable multivitamin today and a chewable probiotic, well I got them thrown back in my face so now I have to find a liquid in both of those so I can use a suringe and force it also. After doing all this research I am finding out a lot of things about the other children too. I suspect both Trinity and Spencer have a yeast issue, and Trinity today developed a weird spotted rash on her back today. I am beginning to think it will never end, I am tired, really tired, I am physically tired, emotionally tired and every other way a person can be tired. I have to get up early to get things done w/o the kids "help" and I stay up really really late researching even more so I know for sure that I know all of the latest treatments, for example I just found an all natural homeopathic way to chelate him with out IV's and stuff very very cool! As for the diet issue I am trying to decide which way to go, once I have him deyeasted he needs to be on a yeast free, sugar free and possibly carb free diet, all this ontop of the gluten free casein free. Just shoot me in the foot now it would be easier to deal with than trying to get my obnoxiously picky eater to eat something "legal" that he can have. I am also on the search for really good refriderator locks, he already figured ours out so it is useless, I also have to update the kitchen cupboard ones because he likes to push a chair into the kitchen to get what he wants and usually it is something he can't have. Did I mention I am doing all of this and sticking to my resolutions and not drinking pop, eating chocolate and drinking coffee? Those are my addictions, I have been addicted to chocolate ever since I quit smoking 8 years ago, thats how I was able to stop so I decided I need to kick the chocolate habit for good also. I was also drinking atleast 2-4 cans of pop a day and I didn't need the calories, and I only drank coffee for the creamer I put in it, again more calories I didn't need. It has been tough but I try to focus on other things, like Chase and the treadmill. With that load off my shoulders I am going to try and go to sleep with a pillow over my head so I don't have to hear Chris playing guitar hero.
Thursday, January 17, 2008
The End of Today
Well I forgot to mention that Chase came home sick from school today, atleast I think I did, anyways his teachers note said he had a runny nose at school and by the time he got home his eyes were red, nose red and running, and he had developed a small cough. He is in bed now, the only down fall to everything is nothing is safe for him anymore, there is so much junk in childrens medicines that he can't have any of it, tomorrow I am going to go to the health food store and find a homeopathic remedy for him and get some Olive Leaf Extract and some Vitamin C. I am so tired of him being sick, he is bringing something home atleast everyother week, then I get it and then Trinity gets it. No one else does so I guess that tells me something. I knew my immune system was getting bad and Trinity has been sick on and off most of her short life. I have so far kept to my new years resolutions and I have been pop and candy bar free, and recently I stopped drinking coffee in the morning, now I drink hot green tea through out the day. I also force myself to do atleast 30 minutes of cardio atleast 3 times a week bare minimum. I still have bad days but that is lack of sleep and stress from handling all the parenting on my own. It isn't Chris's fault by any means, he is our rock, but he works alot to support us. They just cut his hours again at Circuit City and if they don't go back up he will have to start Hungry Howies again. We miss him and it is always a party when he gets home from work. I offered to go back to work and we could share the work load in the home and outside the home but he said he didn't think he could do it at home that I could keep my "job" here at home. Little does he know I know that he would be a wonderful teacher for our children (we homeschool) especially at math because he is so good at mental math I think that would be a great benefit for Calista. So at the end of today we managed to get Chase's first dose of GSE, have his first nasty poop, and put him to bed without melatonin (only cause he is sick, and he is in my bed not his own) I have to prepare for tomorrow even though Chase isn't going to school I still have to be up at 7am so I can get the house clean, get ready for the contractors to come, and get ready for Spencer's teacher to come. A lot tomorrow. Right now I am going to sign off and go play some guitar hero before Chris gets in there, I know I am a loser but it is fun and a great stress reliever for me. Its okay you can make fun of me.
and it begins....
Okay I just gave Chase his first dose of GSE in some lemonade, he drank most of it but about a swallows worth he dumped out and wouldn't drink I think he got the majority of it though, it smells so bad I really don't blame him, that is the only dose I will give him tonight, he is supposed to get 1-3 drops twice a day and being that it is so late I won't give him another dose until tomorrow. I do have a new issue, naturally, I am having a hard time finding info on a yeast free sugar free diet, he needs to be on one for atleast 10 days after the treatment to help him heal after that I will have to just watch his sugar, yeast and carb intake very closely to keep him from flaring up again. We have officially started down the path of recovery, pray for us, and for my sanity.
Speech Therapy
So I just got off the phone with Sparrow Hospital and the doctors office had put in a referral for him to receive speech and language therapy the same time as the OT therapy but he is just now on the top of the list for the speech so I set up our evaluation appointment. It isn't until Feb 26th, that is still quite a wait but considering I didn't even know he was referred to the service it is still a pleasant surprise. Help is help and I will always take some extra help!!
I'm NOT a Democrat...BUT
Okay so everyone knows I am not a democrat, I have been a Republican since High School and I'm actually pretty conservative......anyways not the point. The point I'm making is that if I had a choice between Obama and Clinton, it certainly wouldn't be Clinton for many reasons. One of the moms on my gfcf group posted this about Obama and I thought I would share and say "Good for him!"
Obama has this on his site in the healthcare section:
Support Americans with Autism. More than one million Americans have autism, a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate toothers. As diagnostic criteria broaden and awareness increases, more cases of autism have been recognized across the country. Barack Obama believes that we can do more to help autistic Americans and their families understand and live with autism. He has been a strong supporter of more than $1 billion in federal funding for autism research on the root causes and treatments, and he believes that we should increase funding forthe Individuals with Disabilities Education Act to truly ensure that no child is left behind. More than anything, autism remains a profound mystery with a broad spectrum of effects on autistic individuals, their families, loved ones, the community, and education and health care systems. Obama believes that the government and our communities should work together to provide a helping hand to autistic individuals and their families.
Uniquely John Edwards has this:
http://www.johnedwa rds.com/iowa/ issues/healthcar e/autism/ index.html
They are the only two candidates with any information on Autism or their stand on it.
Obama has this on his site in the healthcare section:
Support Americans with Autism. More than one million Americans have autism, a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate toothers. As diagnostic criteria broaden and awareness increases, more cases of autism have been recognized across the country. Barack Obama believes that we can do more to help autistic Americans and their families understand and live with autism. He has been a strong supporter of more than $1 billion in federal funding for autism research on the root causes and treatments, and he believes that we should increase funding forthe Individuals with Disabilities Education Act to truly ensure that no child is left behind. More than anything, autism remains a profound mystery with a broad spectrum of effects on autistic individuals, their families, loved ones, the community, and education and health care systems. Obama believes that the government and our communities should work together to provide a helping hand to autistic individuals and their families.
Uniquely John Edwards has this:
http://www.johnedwa rds.com/iowa/ issues/healthcar e/autism/ index.html
They are the only two candidates with any information on Autism or their stand on it.
Wednesday, January 16, 2008
Videos of Chase
***update***I added the video of the kids dancing to high school musical on youtube
So as I sit here uploading videos I took of Chase tonight he is dancing in front of High School Musical! He cracks me up, he loves the end song when they are all dancing in the gym. I was trying to help him clap to the beat of the song and he really enjoyed that. Anyways so the videos I took of him tonight are pretty basic Chase. He loves to play in my dish water but I never get anything done and he makes a bigger mess spraying/throwing water every where so lately I haven't been letting him do it, well that has had consequences, I get his chin in my butt, hip and leg ALOT because he is so mad at me, so tonight I got out the camera so I had some comparison videos to base his treatment off from. I posted them on youtube and I am going to add them to this blog we will see I am not that great with technology but you can see any and all of our videos at www.youtube.com/autismmom4 These videos are typical Chase, the meltdown, the stimming, all of it very real and very often. Check them out.
So as I sit here uploading videos I took of Chase tonight he is dancing in front of High School Musical! He cracks me up, he loves the end song when they are all dancing in the gym. I was trying to help him clap to the beat of the song and he really enjoyed that. Anyways so the videos I took of him tonight are pretty basic Chase. He loves to play in my dish water but I never get anything done and he makes a bigger mess spraying/throwing water every where so lately I haven't been letting him do it, well that has had consequences, I get his chin in my butt, hip and leg ALOT because he is so mad at me, so tonight I got out the camera so I had some comparison videos to base his treatment off from. I posted them on youtube and I am going to add them to this blog we will see I am not that great with technology but you can see any and all of our videos at www.youtube.com/autismmom4 These videos are typical Chase, the meltdown, the stimming, all of it very real and very often. Check them out.
Mom GUILT
This was posted on one of my groups I in and I thought I would post it because it is so very true.
When a child is diagnosed with autism, parents develop a new vocabulary. Conversations contain words like ABA, receptive and expressive language, discrete trial training, eye contact, floor time and biomedical approaches. Parents share their joys, their fears, their strategies and theirdreams. In fact, almost everything is easily discussed except one thing – THE GUILT FACTOR. While it's proven time and again that parents are NOT responsible fortheir child's autism, many parents have this nagging little feeling some where deep inside that they are to blame. If they don't feel they caused the autism, they typically feel that their child would be doing better andprogressing faster if they just put more effort into it. One can only equate it to preparing for the Bar exam. No matter how much you study, you could always do a little more. Simple every day activities result in great emotional stress for an autism spectrum parent. It's not long before the "guilt factor" spills over into every area of life.
HOW THE GUILT FACTOR IMPEDES YOUR LIFE
Your autism spectrum child is interested in animals. In a completely"non-typical" method of conversation, your child names all the farm animals and wants you to repeat it back to him. Again and again and again! You do so and the guilt factor sets in. "This is so inappropriate" you think to yourself. "I should take this opportunity to teach my child how to converse appropriately. " But you know that if you don't comply to your child's wishes he'll have a meltdown, and you're busying making dinner,your two year old is crying because she's hungry and your eldest needs help with her homework questions.. Disheartened, you continue the banter withyour child, blaming yourself for not doing a better job. The telephone rings and it's your friend. You're thoroughly enjoying theconversation but just then you notice your child repeatedly spinning the wheels on a toy truck while making a strange noise. "I shouldn't be talking to my friend. I should be teaching my child how to play with that toy" you silently berate yourself. Then your child begins to run up and down the hall and you silently reprimand yourself. "I must get off this phone. Time is precious and I should be engaging my child". Feeling discouraged, you're torn between hanging up on your friend and redirecting your child. When picking up your child from OT, you chat politely to the other parents. One mother mentions that her daughter has extra speech therapy. Another one talks about the social skills group she enrolled her son in. Another one declares that she just signed her child up for Karate with an aide to help him. Despair and guilt wash over you. "These parents do so much" you think to yourself. "How do they do it? Where do they find the time? I should do more. Perhaps I should have signed my child up for Karate instead of swimming." As the guilt factor sets in, you shamefully accuse yourself of being a bad parent. It's been a long day and you're exhausted. You've been to work, dealt with tantrums, spoken to three teachers, rearranged your child's therapy schedule, cooked dinner, bathed your children, cleaned up and prompted your child through simple activities. As you plop on the couch to watch some TV, that feeling of guilt washes over you. "I shouldn't be relaxing." You say to yourself. "I should be re-writing my child's program. I should be researching new methods of treatment. I should be going over my child's IEP." But your brain can't take one more thought about autism and you guiltily sink into the couch and think "Tomorrow, I'll tackle it tomorrow".
KEEP IT IN PERSPECTIVEP
aradoxically, parents of autism spectrum kids are one of the most proactive groups that exist. While they commonly feel they're not doing enough, these parents should be honored and commended. They're able to cope with more in a day, a month and a year than most can conceive of coping with in a lifetime. Their resilience, creativity and persistence help their children progress and reach potential that nobody thought possible. The great strides that have been made in the autism community are largely due to parent driven establishment. The next time the guiltfactor sets in, keep it in perspective and remember the following points.
1. You're not alone You are a great parent. You are your child's best advocate. You have alot on your plate. Your days are often filled with a great deal of mental anguish and emotional stress. You help your child through small activities that most parents don't even think about. You fight for services for your child. You fight for the best class placement. It can be tiring. It can be exhausting. As you look around, you often feel that other parents are doing a better job. Realize they think the same of you. The guilt factor impedes their life too. Parents of autism spectrum kids have a common bond. They understand, they empathize and they spur each other on. If you declare "My 6 year old dressed independently today" they rejoice with you, because they too appreciate every milestone, large or small.
2. Organizations Parents of children with autism have been the catalyst of some of the largest and most successful establishments for helping those on the spectrum. This is on a worldwide basis. A large number of autism schools have been driven by parents. Special education distributors and manufacturers often have parents at the helm. Researchers and educators are often parents. Increased services in schools and communities are the result of parent driven efforts. Non profit establishments have teams of dedicated parents who are committed to helping those on the spectrum. You might not be part of one of these establishments but you have made a difference. It's the combined unity of parents and a strong voice when advocating for your child that calls these organizations into being.
3. Relationships When your child is born you are instantly a parent. The role of a parent is to love, educate and support your child. You provide your child with values, teach right from wrong, build their self esteem and guide them to become happy, independent adults. When you have a child with autism, you become a teacher. The role of a teacher is to educate a child. Whether it's a small task or a large task, teachers use every opportunity to educate a child. As a parent of a child on the spectrum it's difficult to maintain a balance. While you want your child to learn as much as possible, you also simply want to be a parent. The next time the guilt factor sets in because you're not teaching your child at every moment, release it immediately. Your child loves it when you're just being a Mom or just being a Dad. While it's perfectly fine to teach some of the time, a healthy balance leads to a healthy relationship between you and your child. Enjoy those moments with your child. Even if they aren't typical interactions, they're certainly fun!
4. Acceptance On asking adults with autism "What's the single piece of advice you would give to parents of autism spectrum kids?" the answer is almost always aunanimous "Unconditional love and acceptance." For just a moment, view your child's perspective. Almost every action gets corrected. Almost every behavior is modified. Method of play is considered inappropriate.Self stimulatory behavior is often halted. Your child is constantly being told to think, talk and act in a way that is foreign to his inner nature. It can't be easy to keep one's self esteem intact. I certainly advocate teaching as many skills as possible to help your child function in life..However, it's essential your child knows you believe he is perfect just the way he is. It's simply unfortunate that others might have difficulty understanding him. Your child should intrinsically know the reason he's learning new skills and altering his behavior is not because you want to change him, but because it will help others relate to him, grant him acceptance and allow him to lead a more productive life. The next time you feel guilty about not correcting your child's behavior or mannerisms, remember that delighting in your child's unique qualities is just as important as teaching appropriate actions. The next time the Guilt Factor impedes your life, simply acknowledge itspresence. You don't feel guilty because you're a bad parent. You feel guilty because you're an outstanding parent. You're a parent who loves your child dearly. You're a parent who is so committed to helping your child learn that you feel bad taking time for yourself. Your hard work, dedication, energy and eternal giving are unbeknown to most andrecognized by few. I acknowledge you and say "Well done! I know how committed you are and what it takes. You are an exceptional parent and I recognize your greatness!- By Jene AviramNatural Learning Concepts www.nlconcepts.com
When a child is diagnosed with autism, parents develop a new vocabulary. Conversations contain words like ABA, receptive and expressive language, discrete trial training, eye contact, floor time and biomedical approaches. Parents share their joys, their fears, their strategies and theirdreams. In fact, almost everything is easily discussed except one thing – THE GUILT FACTOR. While it's proven time and again that parents are NOT responsible fortheir child's autism, many parents have this nagging little feeling some where deep inside that they are to blame. If they don't feel they caused the autism, they typically feel that their child would be doing better andprogressing faster if they just put more effort into it. One can only equate it to preparing for the Bar exam. No matter how much you study, you could always do a little more. Simple every day activities result in great emotional stress for an autism spectrum parent. It's not long before the "guilt factor" spills over into every area of life.
HOW THE GUILT FACTOR IMPEDES YOUR LIFE
Your autism spectrum child is interested in animals. In a completely"non-typical" method of conversation, your child names all the farm animals and wants you to repeat it back to him. Again and again and again! You do so and the guilt factor sets in. "This is so inappropriate" you think to yourself. "I should take this opportunity to teach my child how to converse appropriately. " But you know that if you don't comply to your child's wishes he'll have a meltdown, and you're busying making dinner,your two year old is crying because she's hungry and your eldest needs help with her homework questions.. Disheartened, you continue the banter withyour child, blaming yourself for not doing a better job. The telephone rings and it's your friend. You're thoroughly enjoying theconversation but just then you notice your child repeatedly spinning the wheels on a toy truck while making a strange noise. "I shouldn't be talking to my friend. I should be teaching my child how to play with that toy" you silently berate yourself. Then your child begins to run up and down the hall and you silently reprimand yourself. "I must get off this phone. Time is precious and I should be engaging my child". Feeling discouraged, you're torn between hanging up on your friend and redirecting your child. When picking up your child from OT, you chat politely to the other parents. One mother mentions that her daughter has extra speech therapy. Another one talks about the social skills group she enrolled her son in. Another one declares that she just signed her child up for Karate with an aide to help him. Despair and guilt wash over you. "These parents do so much" you think to yourself. "How do they do it? Where do they find the time? I should do more. Perhaps I should have signed my child up for Karate instead of swimming." As the guilt factor sets in, you shamefully accuse yourself of being a bad parent. It's been a long day and you're exhausted. You've been to work, dealt with tantrums, spoken to three teachers, rearranged your child's therapy schedule, cooked dinner, bathed your children, cleaned up and prompted your child through simple activities. As you plop on the couch to watch some TV, that feeling of guilt washes over you. "I shouldn't be relaxing." You say to yourself. "I should be re-writing my child's program. I should be researching new methods of treatment. I should be going over my child's IEP." But your brain can't take one more thought about autism and you guiltily sink into the couch and think "Tomorrow, I'll tackle it tomorrow".
KEEP IT IN PERSPECTIVEP
aradoxically, parents of autism spectrum kids are one of the most proactive groups that exist. While they commonly feel they're not doing enough, these parents should be honored and commended. They're able to cope with more in a day, a month and a year than most can conceive of coping with in a lifetime. Their resilience, creativity and persistence help their children progress and reach potential that nobody thought possible. The great strides that have been made in the autism community are largely due to parent driven establishment. The next time the guiltfactor sets in, keep it in perspective and remember the following points.
1. You're not alone You are a great parent. You are your child's best advocate. You have alot on your plate. Your days are often filled with a great deal of mental anguish and emotional stress. You help your child through small activities that most parents don't even think about. You fight for services for your child. You fight for the best class placement. It can be tiring. It can be exhausting. As you look around, you often feel that other parents are doing a better job. Realize they think the same of you. The guilt factor impedes their life too. Parents of autism spectrum kids have a common bond. They understand, they empathize and they spur each other on. If you declare "My 6 year old dressed independently today" they rejoice with you, because they too appreciate every milestone, large or small.
2. Organizations Parents of children with autism have been the catalyst of some of the largest and most successful establishments for helping those on the spectrum. This is on a worldwide basis. A large number of autism schools have been driven by parents. Special education distributors and manufacturers often have parents at the helm. Researchers and educators are often parents. Increased services in schools and communities are the result of parent driven efforts. Non profit establishments have teams of dedicated parents who are committed to helping those on the spectrum. You might not be part of one of these establishments but you have made a difference. It's the combined unity of parents and a strong voice when advocating for your child that calls these organizations into being.
3. Relationships When your child is born you are instantly a parent. The role of a parent is to love, educate and support your child. You provide your child with values, teach right from wrong, build their self esteem and guide them to become happy, independent adults. When you have a child with autism, you become a teacher. The role of a teacher is to educate a child. Whether it's a small task or a large task, teachers use every opportunity to educate a child. As a parent of a child on the spectrum it's difficult to maintain a balance. While you want your child to learn as much as possible, you also simply want to be a parent. The next time the guilt factor sets in because you're not teaching your child at every moment, release it immediately. Your child loves it when you're just being a Mom or just being a Dad. While it's perfectly fine to teach some of the time, a healthy balance leads to a healthy relationship between you and your child. Enjoy those moments with your child. Even if they aren't typical interactions, they're certainly fun!
4. Acceptance On asking adults with autism "What's the single piece of advice you would give to parents of autism spectrum kids?" the answer is almost always aunanimous "Unconditional love and acceptance." For just a moment, view your child's perspective. Almost every action gets corrected. Almost every behavior is modified. Method of play is considered inappropriate.Self stimulatory behavior is often halted. Your child is constantly being told to think, talk and act in a way that is foreign to his inner nature. It can't be easy to keep one's self esteem intact. I certainly advocate teaching as many skills as possible to help your child function in life..However, it's essential your child knows you believe he is perfect just the way he is. It's simply unfortunate that others might have difficulty understanding him. Your child should intrinsically know the reason he's learning new skills and altering his behavior is not because you want to change him, but because it will help others relate to him, grant him acceptance and allow him to lead a more productive life. The next time you feel guilty about not correcting your child's behavior or mannerisms, remember that delighting in your child's unique qualities is just as important as teaching appropriate actions. The next time the Guilt Factor impedes your life, simply acknowledge itspresence. You don't feel guilty because you're a bad parent. You feel guilty because you're an outstanding parent. You're a parent who loves your child dearly. You're a parent who is so committed to helping your child learn that you feel bad taking time for yourself. Your hard work, dedication, energy and eternal giving are unbeknown to most andrecognized by few. I acknowledge you and say "Well done! I know how committed you are and what it takes. You are an exceptional parent and I recognize your greatness!- By Jene AviramNatural Learning Concepts www.nlconcepts.com
New game plan
As of right now Chase is receiving therapy through the school. He has OT (occupational therapy) 3 times a week, swim therapy once a week, horseback riding therapy once a week, and speech therapy twice a week. All of these have proven very helpful. He loves water so he loves to swim and his teacher says he loves to ride horses which doesn't surprise me one bit considering Chris's side of the family all ride. Even will all of those available to him I still felt like he hasn't improved enough. It has been 3 years and we haven't really gotten anywhere. So now that I am the stay at home parent I have decided enough is enough and we are going to push him farther and do more for him. I have spent the past 4 days sitting infront of this stupid computer until all hours of the night while everyone is sleeping (and if I were in my right mind I would be too) researching on treatments for Autism. I have looked into a DAN doctor and we are pretty sure that is out of the question for now considering the expense. But there are things that I can do here at home OTC for him that have been found to help children with Autism. I was so excited, it was like a light bulb went off and like someone said to me this is what you are meant to do now do it and be well. So here I am with my game plan. I will save my son, I will help him to overcome Autism, I will help him to learn how to communicate with the world so he doesn't feel left out for the rest of his life. So this weekend is the big weekend. We are going to start our first treatment, we are going to tackle yeast. Yeast overgrowth is common in children with Autism and is the reason for many sensory and behavioral problems. For example toe walking, irrability, and hard time potty training all can be symptoms of yeast. For more information on yeast in the gut I found www.danasview.net/yeast to be the most beneficial site I have ever read, as a matter of fact www.danasview.net is where I learned a lot of stuff the past few days and I can definately say she is my hero and role model. Back to the point, so this weekend we are going to be deyeasting him. Now part of me is excited and part of me is scared. Excited of how he will be with the yeast gone, and scared because of the stories I have heard from other parents. One mother called her child a "yeasty beasty" because of the reaction he has to the yeast die off. When the yeast dies they excrete a toxin that has a huge affect on the child (or anyone for that matter) not to mention the warning of the things that are literally going to come out of him until all the yeast is gone, you can't really prepare for that. Honestly though I think the excitement is overpowering the fear though, whats a little stinky poop? I have 4 kids, poop is nothing. So that is why I started this particular blog, it will be place to escape and vent and record everything that is going on with him everyday so when we have hit our goal I can look back and say wow what a long hard road but so totally worth it! The yeast is just the beginning of a huge list of things we are going to start implementing one at a time, slowing trying to pull our precious son out of the dark fog that has plagued him since he was 12 months old. We are also currently on the gfcf (gluten free casein free) diet but I am really debating on keeping him on this, I am torn and have a couple opinions about it, as of right now he is still on it but after I start the yeast treatment I am not sure, I know he will be on a very low sugar and carb diet since they both feed yeast. Again it is going to be a trial and error to see what works and what doesn't, what makes him react and what doesn't. Anyone reading this is along for the ride, Lord knows our family will need all the support we can get cause it's gonna get rough. For pictures and more about our family in general you can check out our family page at www.geocities.com/awesomeautiemommy@sbcglobal.net we each have our own page. Until next time.
About us, about Chase
Well where do I start? The beginning......it was 3 years ago (4 this coming June) when Chris and I were sat down in our living room and told what we already suspected, Chase has Autism. I remember we just looked at him and thought why him, what did he do to deserve this? What did we do wrong? There were no answers then, there are still no answers now. Naturally he started speech therapy (he is nonverbal) and when he turned 3 they put him into a special classroom for children with speech and language delays. Looking back on it now I should have said something, I should have said "No this isn't good enough" but everything was in such a fog and you should be able to trust what professionals are telling you so we did. At this point at 3 years old he still had no words, no communication. He had some sensory issues, loved to be held and squeezed, wouldn't let anyone near his mouth and loved to spin everything and line everything up nice and neatly. There was some flapping but not a whole lot, it certainly didn't take over his concentration. The school year ended and he didn't progress at all, the teacher blamed Chris for Chase's attendence being so poor (Chris was home with the kids then) like she didn't believe us when we said that Chase was sick. So at 4 he started his second year of school, this time at a different school. He was enrolled into the Marvin E. Beekman Center, it is truly one of a kind in my opinion. He still wasn't in the AI room, he was put into another speech and language delay room but this teacher understood him, she had been doing it for years and had experience with Autism, that alone meant alot. We saw progress! He was using some sign and using some PECS for things he wanted, this was huge! He did lose somethings, he didn't like to have the weighted vest on anymore or the weighted blanket. He gained the need to flap more, alot more. The toe walking started about this time also. So another school year passed, this time with wonderful news, Chase would be starting in the AI room in the fall! Plus he would be in summer school in that room so he would be there year round. Chris and I got to meet the teacher, Karen Pruitt and we fell in love with her right away. She knew Chase the second she saw him, she understood him, she knew how to communicate with him, a bigger bonus: she knew how to teach us what to do so that we were a team. That brings us to the current. Chase is 5 years old, he will be 6 in July. He is still nonverbal, but has many "happy" sounds and sounds that might possibly be words one day. He still has sensory issues which have now increased to eating everything nonedible perfering rubber, plastic or foam. He still toe walks about 80% of the time and he is constantly flapping or finger popping. He can be mean, very mean actually and is able to take me down to the floor easily when he wants to. Meltdowns still come but usually only when he has over stimmed himself so we try to avoid letting him do that. He likes to throw things when he is mad and he has a pretty good aim, he nailed me in the head with a hotwheel from across the room, and he likes to drop down to the floor when he doesn't want to do something and if you have ahold of him you are going down too. He hisses when he is made and pushes his chin into you really hard so you know he is mad. In a nutshell that is Chase as of today, as for tomorrow only time will tell.
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