~Bringing Emma Back~

Christmas past and Christmas now~Healing!!!

2011-11-29T18:45:00.000-08:00

With Christmas coming I was thinking about the past few we have had. I know it's stressful when you have a child on the spectrum and I wanted to share what I realized hoping that it helps someone.

4 yrs ago
My parents came to visit and I will never forget the look on my dads face while we sat at the table eating dinner while Emma screamed and kicked under the table for reasons that I still don't know.
We started to recover her that spring.

Two years ago with diet and some biomed
If I asked Emma what she wanted for Christmas she would cheerfully say Christmas back to me, same if I asked what present do you want, she would say "present".

last year
With great things from a clean diet and biomed the best I would get is she would answer "yes" if I asked do you want a doll for Christmas...

This year on about 1/3 of the biomed that we were doing last year and a clean diet and 11 months into homeopathy....

This past week I asked what she wanted and she gave me a list with details like what color dress the barbie has that she wants, and how her hair is. Also said "I will love whatever you give me because you are being nice!"

Not that we haven't had ups and downs, even times when I wanted to throw my arms in the air but comparing year by year, it's undeniable that she has healed a ton and continues to heal!!!
Hoping everyone has a wonderful December

Motor Planning and Body Awareness : The Therapy Shoppe, The extraordinary little specialty shoppe for school and pediatric therapists, teachers and parents too.

2011-09-07T07:48:00.000-07:00

Motor Planning and Body Awareness : The Therapy Shoppe, The extraordinary little specialty shoppe for school and pediatric therapists, teachers and parents too.

Grocery Day and Hope

2011-06-10T13:08:00.000-07:00

Today was grocery day. The day the list is front to back and the cart weighs a ton. Today there was a child crying, another wondering away and a mothers who you could actually hear say "I wonder what it would be like if it where socially acceptable to cry in public"
You could see the exhaustion and sheer defeat in her eyes. The stares from the cashier as one starts to scream because her sister touched her and the other is digging through the candy that was just knocked onto the floor.

As I continued to check out in front of her and her children I realized, there was Emma, hanging out by the cart saying hello to people who passed by us with a smile on her face and at that moment my heart was full and breaking at the same time.

Not too long ago, that woman behind me, was me. Hot flashes near tears and full of complete defeat from a trip for groceries. When she directed that question to me, I didn't go into "trust me I have been there" or "let me tell you what we have done" I just assured her that she would not be the first mom to do that.

But full because, it wasn't me! We have come a long way, both of us have. In the last three yrs we have gone from, not a chance I would/could bring her to the store anymore to, ok I will but prep all morning with snacks activities and pep talks to myself with a trip that usually included tearing up at least once, to today. TODAY I described Emma to my MIL as "like an angel at the store today"

Now I know our journey isn't over yet and I am sure the trip was party different because I am now different. I have hope. Before I was driven by determination now I am driven by hope and belief that more trips to the store will be just like this morning.

So many "small" things like this have been happening lately, it's almost like a dream. Like our lives where always normal and everything before was a bad dream.
Motor planning still needs some time and all around health in terms of diet restrictions, needs for supplementation etc also. There are still days where I panic and start to see some old things but that's it, it shows for a day or two and then right back (with dosing) to bright faced happy friendly and colorful!

Homeopathy

2011-06-03T18:49:00.000-07:00

So we started. In December we saw Pierre Fontain for Emma. It was an experience for sure and how nice it was to have someone who wanted to hear about all the little quirks we had been trying to tell doctors about for yrs and some things that I never even thought of before. On Jan 7 we started her remedy.
We have seen some ups and down and did some tweaking. Had some amazing days with her but all in all it wasnt consistent so we switched to a close remedy to the last and so far WOW WOW WOW. The one eye that seems to droop since about two yrs ago isn't doing it at all anymore, it's only been on the new remedy for a few weeks but it's very consistent.
We are down to the basics with biomed, clo, probiotics, my beloved enzymes (our holy grail) and low dose of multi from Yasko.

I'll write more soon when I have a better picture of what has been going on but for now I will say it's interesting to see healing that has been allowed to happen vs healing (which was huge reguardless) that seamed forced. Somehow it just apears more natural, like she was always meant to speack the way she is and play and smile the way she is these days.
I now believe we will get her to a place where one infraction or hormone change won't sent us back to where she was at 3 yrs old. I believe she will go to college and yes most likely experiment with Lord know what and it won't be the end of her indapendence.

Looking back and apreciating now

2010-09-23T11:20:00.000-07:00

~There is a pitch, there is a smell to detox and also to the kid with yeasty cradle cap. There is a heavy feeling in the air of a house that feels drained all day everyday.

I remember the day I looked into her eyes and it was as if the doors to her soul had shut, nothing was coming out of her, it was as if they where looking inward instead of out at me.

I rarely think of it now, I know it was bad. I remember holding my head in my hands because it was only 8 am and I was already defeated and felt like my soul had been drained out of me.
When I think back there are alot of holes in my memory, it's all a fog with random clearings of memories, trying to help Theah with homework but couldn't because every time Emma cried (which was about ever 10 minutes, in a good day) she would fall to the ground and end up hurt on something or she would hit herself her scratch herself. My job for two yeas was damage control, my Mom suggested a helmet.

I remember holding her arms talking to her and it felt like my heart was coming up through my throat and it just wasnt getting me anywhere with with her. feeling like I want reaching her, like I was in some other realm that where she was. As if she was in the clear bubble and I would bang away and there was no response, never breaking through to her.

I remember thinking how can she scream and bang everything but cover her ears when I turn on the water. Watching her drop a toy pr pushing a button on somethig and then rushing her hands back to her ears before it made a sound over and over.

I remember her crying until she choked and not being able to calm her enough to get her to breathe.
I remember her carrying a penny in each hand for three months, how she slept with them. I remember the animals and dolls on her bed had to be not only lined on the bed but in the same order and since she was already hysterical most of the day, I didn't know what she wanted and the screaming would go on for hours.

I remember not being able to understand her words, they where mixed together and her frustration with me not understanding her. It's not until now that I can see that clearly, I had no clue what was going on then.
I remember hot flashes of anxiety in the grocery store, mall, car at my daughters school.
I remember at 18 months she knew her left from her right then lost it for 3 yrs.
I remember all the dirty looks at Theah's cheer practices because Emma was either bolting toward the road or screaming like a banshee that had just been branded.

I also remember though, the day I felt her hands squeeze back when I hugged her. I remember the first time I ever heard her squeal and giggle. It wasn't until she was almost 4 but it happened.

But here's what I know...
Removing additives, milk and some other intervention we now have new memories.
For example, this morning I was cooking breakfast and Emma played nicely came over kissed my arm and went back to playing. She is reading sight words! Emma has a best friend at school and in the words of Emma "best friend is someone you love and spend alot of time with"
Her languge has exploded, almost everyday something new.
She comforts her sister when she is sad or nervous about something.
She plays board games with us and wins!
Emma will sometimes say "OK" when something has to change.Not tantrum
She actually smells like soap, when she doesn't smell like clo. LOL
Rarely do we hear that pitch when she does cry and when we do, we know why and what to do.
The runny nose and dark circles are gone

She is compassionate, smart, and the only one in our house with an ounce of rhythm.

Autism or whatever the hell that is was NOT a blessing. Did I learn a ton about myself and what is important? Absolutely but it was hell for her, her sister and her father and I.
BUT it's not a the end of the world. There is something that can be done to improve their health and ease the burden on their brains.

She is not yet where I would like her to be, her diet is very restricted of alot of things that should be nutritious. There are still sensory things she deals with along with high fevers some tics and ocd but she is present, she isn't in that bubble anymore.

Behavior needs to be learned now, the boundries and basic right and wrong most kids learn as todlers she didnt but she is now and fast

Nu Life Foods GF/CF/SF and Yummy

2010-08-04T13:00:00.000-07:00

We where recently asked to try Nu Life Foods. Their products are GF/CF/SF and all natural. These foods are made to be heated and eaten not mixed or prepared by you so it's a great convenience food.
I was a little hesitant because Emma is so sensitive but thought it was worth a shot, at least if she either wouldn't or couldn't eat it I wasn't throwing away money and when you are gf/cf additive free along with strawberry, apple, malts etc I have thrown away plenty in the past.

The items included in the sample package arrives in a cooler with dry ice and cool to the touch. After looking threw it all we put them in the freezer. Each one is in a sealed zip lock style bag, I liked that because you can take out and heat only what you want.

Here is a list of the item included
•8 chicken nuggets
•2 chicken burgers
•8 beefy veggie meatballs
•2 slices of ultimate cheese pizza
•2 pieces of French toast
•4 chocolate chip cookies

The cookies of course where the first ones to try, I put them in the oven and they smelled like toll house cookies! The girls loved them.

After that I decided to use the rest for lunches for that week

The Chicken nuggets where lunch on Monday, Emma and I LOVED them! They did take a few extra minutes to heat up.

The Pizza was next, the taste was good but we did have to add extra (rice) cheese. We love cheese ;)

Wed we had the meatballs, LOVE LOVE LOVE them!!!! Let me start with THEY LOOKED LIKE MEAT! Not like the meatballs you get in the freezer section of a grocer. I loved that they are full of veggies too. I felt real good about giving these to my girls.

The french Toast came next, smelled good and Theah's favorite next to the cookies of course. I have yet to find any other french toast she could have so we could eat them again.

The last thing we tried where the chicken burgers. AWESOME! Again, they looked like meat. They browned beautifully on the stove and We all loved them!

So I am really glad we tried them, I was concerned about citric acid being one of the ingredients, that has proven to be a problem in some cases in the past but there where no behavior changes that week or since.
I will be ordering the chicken burgers, meatballs cookies and nuggets again. It was so nice to have warm meals that I didn't have to make myself and where actually food.

Lord knows we are all very different so obviously, what works for my family is what works for MY family but if you decide you want to try it there is a discount code that will give you 10% off your first order
Enter "EMMA10" in the discount code box as you check out to receive your discount :)

Update

2010-07-13T08:43:00.000-07:00

Correction!
We moved our Homeopathy appointment to a later date.
I will post when we do see him though.

It's been quite a while since I posted anything.... Last fall after always thinking or maybe selectively believing Emma had always been this way and I just didn't notice, a few family members said no way. One said Angie I came to visit and she was a bright eyes baby, 3 months later I came to visit and she was gone.
I guess when the tantrums where getting worse and worse I was just trying to get peace and I wasn't noticing how far down the rabbit hole she was going.
This hit me hard.

After I picked myself up off the floor we decided to try Amy Yasko (http://www.dramyyasko.com/) who runs a test to look for genetic variations in DNA in the methylation pathway. Sure enough. It explained why she reacted to terribly to what most people have great gains. It also explained why she reacted to chemicals in foods the way she does.

After slowly adding in some of the main support supplements recommended we where actually able to add in a multi vitamin, something she has never been able to tolerate. Woot Woot!

Emma also started school in Jan. She did wonderfully. In the beginning she was getting very overwhelmed but at the same time we upped her clo and she started to blossom some more again and the school year went very well.
At the same time her processing amazed me. That outside of the box thinking is getting better and better.

So here we are. Amazing progress! You would never think Autism when talking to her most days and I am thrilled but the complete removal of gluten has brought on weight loss so I was at a crossroads. I can't keep taking food away and replacing with supplements etc. that makes the behaviors return.
We decided that while Yasko's approach is very successful for many, the long list of supplements and additional removal of foods just wasn't sustainable.

We are still dealing with the fevers and cycles of ocd and echolalia along with yeast.
So here we stood with a child who appeared to be completely "NT" but unable to be involved in most activities since they revolve around food and finances dwindling as the supplement list grew so going out was getting harder and harder.

I made the decision to see a Homeopath. Pierre Fontaine, he is having great success with autism and developmental delays.
Children are able to eat fruit again without loosing emotional control for a week.
It's heartbreaking to be honest, my daughter wants to eat apples. Not junk food apples and I have to say no.
We see him in Sept.....

Winter Regression?

2010-01-11T12:35:00.001-08:00

Alot of crying, self harming and even some very new things are going on. Only time will tell.

Learning more and more

2009-12-03T08:25:00.001-08:00

Lately Emma has been naming more numbers that ever, not just the number 4 she has been naming for a year now. I can't seem to convince her that the number 8 is not a zero though, too cute technically it is two zeros.
It is so exciting watching her advance again.

6 viles one urine and 3 stools later

2009-12-03T08:23:00.000-08:00

Update:
Pipicked up the results on paper and it was nitrites not nitrates even though I asked her twice to be sure and it wasn't two types of bacteria it was + for bacteria OMG, why do I still have to figure this stuff out on my own after speeking with the nurse who had the results in front of her grrrr. Also alluminum was on the highest side of the refrence range as strep came back double what the refrence range was for her age WTF?! Did an ANA and that came back ok as far as they say I have not seen it yet and the OAT is taking more than a week. This kind of thing might be why people go crazy
We have most of the test results back. Liver etc. looks normal, were still waiting on mercury, aluminum and lead came back normal. Urine came back with Nitrates and two types of bacteria. I would be amazed if there isn't yeast too and Vit. D was low. I am still waiting on the strep and then we will sit down with the Dr. to discus what our next move will be, besides identifying what bacteria.
We are also waiting on big sisters to come back.
Meanwhile we stopped the antiviral( to get a true result) and have seen some very interesting behaviors. I am actually excited to get the show on the road.

Scientific Link to Autism Identified

2009-11-19T14:38:00.000-08:00

Scientific Link to Autism Identified

Relieved

2009-11-11T07:07:00.000-08:00

Last week I saw the Dr. I have been stalking for openings for a little over a year now and I LOVE HER! She is intersted in what we are doing already ordered tests for Theah and is willing to sit and have an extended office visit so I can explain what we are doing with Emma and hopefully get some dirrection!
I have renewed hope for the future :)

One at a time

2009-11-08T07:50:00.000-08:00

So we've been doing Trienza and things seem to be clearer for her so we moved on to Enhansa, haven't see much but we have all been really sick so more time.
Vitamins on the other hand:
In lou of us all being sick I really wanted to start the new multi vit./mineral we order from Kartner Health. and started it about the same time (stupid me I know) When I ordered I didn't see mention of flavor but when it arrived sure enough "natural" flavor but I really need to get this stuff in my girls so I try it anyway. The aggression towards others we haven't seen in quite a while was unbelievable. We discontinued the vitamin and two days later she seems calmer still different but she didn't head butt me today and her nose isn't stuffy.
I'm not posative it was that since we did see some behaviors when first starting Enhansa but there was the virus with high fever and now Halloween which I'll put in another post so I think next week we'll challenge the vit./min. and see.
MORAL OF THE STORY....One thing at a time!!!!

48 Hours into Enhansa

2009-10-13T14:48:00.000-07:00

Wow! this will definitely test my ability as a mom for sure! The whining the crying and the SCREAMING!
I am taking the advise of other Moms and sticking to it, using activated charcoal and the new multi Vitamin has Biotin, along with the probiotic and the protease in the Trienza I am fully ( I think) armed and ready, ....maybe.
Wish us luck :)

Keeping me on my toes.

2009-10-11T12:03:00.000-07:00

We have been doing really well with the TriEnza. Emma's thinking and actions are so much clearer but........the is spinning all of the time and stimming again but......when she asks for something and I say no she responds "ok" "maybe next time" WHAT she didn't scream, grunt throw something YAY!!!!
Next week we start a multi vitamin that I am very hopeful she and Theah will tolerate well and then we'll start Enhansa. wish us luck :)

Tori's GFCFSF Blog: "Autism Moments" on an Airplane

2009-10-06T08:35:00.000-07:00

Tori's GFCFSF Blog: "Autism Moments" on an Airplane

Swine Flu Vaccine Additive Cripples Animals

2009-10-05T05:18:00.000-07:00

Swine Flu Vaccine Additive Cripples Animals

~Looking forward~

2009-09-25T07:49:00.000-07:00

OK I think I have found a place to put all of that emotion. It's a good thing she won't have the "Autism label" I have no excuses to hold her back. Nobody will ever write her off as disabled, slow, stupid, retard ect. She has come so far and I have decided that instead of thinking about insurance coverage and dx coding I am going to focus on what has worked for our daughter.
What has worked is fallowing my gut feeling, nutrition, toxins,and persistence.
From today we won't be looking at what should have been done by Dr. in the beginning we will be looking at what is still needed and how I can help stop this from happening to other families. We're looking forward

It's not Autism...........

2009-09-23T05:50:00.000-07:00

It has taken me about a week to write this because it hurts. Last week we saw what we where told was a developmental psych. She was an R.N. She explained to me that Emma's "anxiety" was a result of my parenting, that I needed to cut the apron strings. Also, I am very lucky to have the Dr I do because " most of us don't believe food can do that!" First of all the anxiety she refers to I believe is a result of sensory which is a result of autism which is a result from TOXINS! I began to explain that Emma lost a year and a half maybe more of development and that she had stopped talking to us and was just tantruming. I told her about the eye contact and new repetitive behavior. She said to me " when all of these things come together it does look alot like autism but...she knows who you are and is able to love you. A child with autism can't do that. Horse Shit! I met plenty of children on the spec that are very caring.
This hurts because 1. without that stupid word in her dx insurance is non existent for therapies. 2. If we don't recognise what we are dealing with, how can we help her.
Don't get me wrong I am so very grateful that she has come this far. The only people who ever notice she is different are those who work with or love someone on the spectrum. I can't tell you how many times people have said "it looks like Aspergers or Pdd. But these are people who have seen her out in the world not a little room in a hospital.

Die off...I hope

2009-09-20T07:48:00.000-07:00

Emma is losing her mind or maybe I am losing mine, Either way it's nuts and intense and now it's making our older dd very upset so I think I am gonna go to the store and look at the activated charcoal. Not something I had wanted to do. We'll see

2009-09-19T02:34:00.000-07:00

Sooo we decided in TriEnza after going over Gluten Free option over and over. Eating additive free and dairy free has doubled our grocery bill, we adjusted and it's fine. I love the difference it's making in our girls. But with over 30 fruit and veggie sensitivities on top of that we decided to try this first. There are three ingredients in this,

1.AFP PEPTIZYDE

2.ZYME PRIME

3.No-Fenol

We have seen some improvements in clarity but also seen some yeast symptoms as well. We started a pro-biotic and Epsom salts in hoped to flush it out.

Surprisingly the girls are handling having to take these yucky supps pretty well after one really rough afternoon were on a roll now.

UPDATE Sounds like a child on the spectrum

2009-09-08T14:30:00.000-07:00

I calles her and another woman, haven't heard back. Will be calling Mon. morning again.......
That is what the head of special needs in our state said. Funny eh? So she gave me the name of who to call and what info to share with them. Tomorrow morning I will call and we'll see.

2009-09-08T13:23:00.000-07:00

Today I sat down with the Dr. in developmental pediatrics to go r the evaluations. Of course I forgot half of what I was going to say like, lining things up, repeating questions, spinning ect. After looking at the evaluations her decision for diagnosis is Sensory integration disorder. Anxiety disorder ( which I believe to be a result of sensory) But she said it's not autism.
Part of me is very happy that we have come this far that she doesn't see it. The other part of me knows what I see at home and how far we still have to go.

Update

2009-08-31T18:16:00.000-07:00

After a month of letting Emma eat like most kids we saw alot of the old behaviors and some new ones. She has had evals at the school passed her vision and (articulation I was told she just needed books with letters in them, we only use educational toys 80% of the day) but failed language. So they tested her again with the Dial 3 when asked questions many of them needed to be rephrased or given multiple chances to give the right answer; example when asked where the chicken was in the picture she counted all of the objects. When asked what do you do if you break something that doesn’t belong to you she answered “go to a yard sale” when asked to sort the shapes and separate by size and color she did but not separate groups and stacked them, when asked to put 7 blocks on a piece of paper she would line them up until she ran out of space but I was amazed at some of the things she can do! I was told they wanted to do 8 wks of in home Interventions and that Is wonderful but what I am worried about is sensory. Around kids in a classroom/anywhere with noise or unwanted contact she becomes very scared when she becomes overwhelmed she will have a melt down AND NOT BE ABLE TO LEARN!. My hope from all of the testing was she would be in a preschool setting understanding of sensory,pragmatics, her need for time without too much stimulation. She just started really talking and learning 2 yrs ago. I think she needs a low pressure setting to catch up. I know she would benefit so much and most likely do very well in a regular kindergarten class if she was given the opportunity to adjust. At this point we are waiting to hear and on Mon we go back to Childrens for "info share" with the dovelopemental pediatrition to discus the results.encephalopathy unspecified, developmental delay in speech and fine motor, Hypersensitivity to sound, Language disorder-mixed receptive/expressive, attention is delayed From Cincinnati Children’s

2009-08-27T20:55:00.000-07:00

Testing.........tells me what I already know. At first we where going to cut gluten too (gf/cf) but with 50 + IGg sensitivities we decided to try enzymes first.

It's these times I am reminded that we are not recovered

2009-08-11T16:39:00.001-07:00

At lunch today Emma gets down, I think she is going to the restroom...I find her in my room rocking in the chair humming to herself.

2009-08-09T10:20:00.001-07:00

Regtister

Allergy induced autism

2009-08-09T10:16:00.000-07:00

What You Should Know About Allergy Induced Autism

Author: http://www.articlesbase.com/authors/rachel-evans/12847.htm">Rachel Evans

Allergy induced autism has only been recognized by scientists and doctors for a relatively short time since the "discovery" of autism. Since being recognized, its presence has become increasingly common; in line with the increase in autism cases.

OT cont.......

2009-08-05T07:54:00.000-07:00

We recieved the report from OT. They see sensory and attention and problems with open ended questions ,well duh!!!! But it's more that I thought she was seeing. I will take this with me to her DDBP Dr @ our info sharing appt but I am not holding my breath. On a good and sour note I have decided to take matters into my own hands and will be starting an ABA course soon.

2009-07-20T16:40:00.000-07:00

OT doesn't see a problem even though she talked about Theah ( her sister) and when she was asked "whos Theah" she said "I don't know" So now what. do I run around screaming like a crazy person? Do I isnsist that is IS AUTISM! and let them say no way? How do I help a little girl who did nothing but need?

I wish I was string or ignorant

2009-07-20T16:38:00.000-07:00

Because if I was one of those I would be able to handle this.

People don't see it, but I do. I am pretty sure that I am not crazy sooo how do I help her when nobody sees she needs it

Meltdown not always bad perenting

2009-07-14T07:12:00.000-07:00

‘Melt downs’ aren’t always bad parenting

2009-07-03T05:01:00.000-07:00

On Monday Emma spent most of the day running everywhere and around 7:00 pm she ran right into the corner of a wall. 5 stitches but she was a trooper!

Best Day Ever

2009-07-03T04:58:00.000-07:00

Yesterday was so good. Emma was complyant and sweet, affectionate and listening.... Little things like the ear rubbing and lining things up are still in full force but it was such a great day, I love it when we can enjoy our little girl.
I'm wondering if it has anything to do with the antihistamine and Motrin.

Losing my little girl part 2

2009-07-01T06:23:00.001-07:00

Ok we are in week two and although she is changing back to some of her old ways in some ways I swear she seems smarter...her memory is amazing her stimming and seeking is going nuts but it's almost sweet. Some of the days have been awful, coordination (or lack of) has contributed to two bloody knees and 5 stitches in her forehead. She is non stop but most days have been pretty good. Been taking lots of pics to document the changes of course the runny nose, dark circles ect. but also the change in her eyes how she is starting to look through you instead of at you.

It's started

2009-06-16T09:45:00.000-07:00

We have stopped the Epsom salt baths and eased up on the additives no dairy yet I'll give it another week or so since that's the worst of it, the rashes and circles under eyes and then she'll stoop making eye contact and eventually stop talking to us. It's all for the best and I keep telling myself this so hopefully I can keep some perspective and handle this with a little grace.

Vaccinate

2009-06-16T09:40:00.000-07:00

This came from my ins company this morning
~Make sure they get all recommended vaccines (immunizations) on time. ~Immunizing on time can protect your child from serious diseases. You will also protect others at school or day care. ( If they are vaccinated aren't they already safe??????? Why would my child be a danger to them if these children have theirs????
~Talk to your child's doctor about vaccines every time you go for a regular checkup or a sick visit. Ask the nurse or doctor if your child needs any vaccines. These vaccines protect him or her from serious diseases.
~Remember, many vaccines may be combined so a child does not need as many shots.

Well it's started

2009-06-14T18:07:00.000-07:00

We have stopped the Epsom Salt baths and starting too see a change. We have laxed a little on the diet and potty training is gone. I know this is for the best but forgive me when I start to lose it :)

losing my little girl

2009-05-27T06:00:00.000-07:00

It's more than a month away (her DDBP/ OT evaluation) and we decided to take her off of her diet for it, so they can see the Emma that needs help. Without doing this they might not see it all and I may never know how to fully help her by addressing each thing individually. So like I said more than a month away and even though we decided to go this rout months ago I am finding myself mourning the little girl we have come to know who looks you in the eye and smiles and loughs and learns and hugs not to mention the potty training ugh. I know it's temporary and I know it's best to get her all that she needs now so she can have a better future but this morning my heart is breaking.

If you don't have something supportive to say SHUT UP!!!!!

2009-05-25T11:33:00.000-07:00

Oh it's been a long interesting and educational few weeks. It seems these days my mind is like a gerbil wheel spinning and spinning and...spinning. Emma's OT evaluation is in July and I am not real sure what to expect but it's something and Emma continues to learn more and more everyday! I have met a great group of women that are fighting for there children too and fighting for awareness, opening a center her in out city soon to serve other families affected by ASD! maybe one day we cal go to the grocery store and not get all the stares and comments *sigh*
Every day is a challenge, I am so lucky Emma is doing so well but now we are getting all the comments like "I don't see it" I don't know what they are hoping to accomplish with that, I am glad they don't see it it means Emma has a chance at a normal life! But get off my ass, it's not about what you see. If you don't have something supportive to say shut up!!!!! It's not like I run around saying look at me listen to me give me you're thoughts !! grrrrr I guess I needed to vent.

~My Girls~

2009-04-22T12:22:00.000-07:00

Back in the begining

2009-04-15T15:42:00.000-07:00

I should have known!

2009-04-13T08:01:00.000-07:00

I should have known when the nurse came in after Emma was born and said I forgot to have you sign this before we vaxed will you sign it now so I don't get into trouble.

Grape juice

2009-04-06T08:32:00.000-07:00

Yup even though she tested neg. for grapes 24 hrs after going back to apple she was back...eye contact, tantrums,skin,sleep. It still surprises me that food can affect so much so quickly.

Still nuts in my house

2009-03-31T13:33:00.000-07:00

I am not sure if it's the grape juice (deluted)( she tested negative for grapes) or something new or lefteover whatever it was 2 wks ago but potty training is out the window she now pees on everything! Physicly restaining her is exhausting and all the screaming is just wearing me out. I will be so glad when things go back to normal!

Food Amine Content List

2009-03-30T11:31:00.000-07:00

Food Amine Content List

Food Salicylate Content List

2009-03-30T11:17:00.000-07:00

Food Salicylate Content List

UGH!

2009-03-30T10:50:00.000-07:00

Oh boy it's been a very long two weeks...were pretty sure Emma got a hold of some milk based on her behaviour head banging, dilerious laughing, and ear rubbing to name a few oh and a new one now whenever I try to talk to her she growls and screams and the chicken skin on the back of her arms. Thing are starting to get back to normal but it seems like the reactions are lasting alot longer than they use to.

On a good note...I'll be attending my first ASD meeting next week and I am so excited. Not much else just trying to wait out the milk or whatever it was.

Another letter from my Aunt whos boys are doing Feingold

2009-03-15T15:07:00.001-07:00

That's funny you should ask. I had to take him off his medicines this week because he became too withdrawn in class - not participating - unable to complete assignments, etc. So when his teacher came over on Monday night to tutor Kristofer we decided to take him off to see how he does. I gave her the warning about his hyperactivity. Well, he's come home with all his work complete and grades of 100% - and his reading comprehension test he scored a 40% on he got a 92% with the second test. Definitely very chatty - has needed a couple of verbal warnings to settle down - but participating in class, doing his work and very interactive. Now at home, it's been very interesting because normally he gives me and Yiya a song and dance about everything!! And cranky, argumentative, etc. Not any of that behavior has occurred since I took him off his medicine. He gets hyper - I call it the Tazmanian Devil syndrome - but I just let him run up and down the stairs 20 times and burn it off. Doesn't hurt me. And he's been more pleasant at Yiya's as well. So who knows? The diet definitely helps, the fish oil definitely helps and so do the high complex B vitamins. It's not completely "normal" but define normal? I'm thrilled - he's so animated off his medicine - and a total crack up. Although I now call them both "George 1 and George 2."

Kristofer's done very well too - I think I told you I put him back on a low dose of his Concerta - definitely more focused and calm. Has a great group of friends at school, doing his homework well and now has a "girlfriend" - Haley. Whatever!!! He's going to be very busy this spring playing soccer so he won't have too much time to get in trouble. He had a great progress report so I'm pleased. I don't do the Feingold to the tee - but I've made enough adjustments that so far I think we're doing good. I'm thrilled about Alex and glad all that crankiness is gone - definitely a side effect of the medicine.

So overall we're good - things get a little crazy with Alex but that's just who he is - he makes everyone laugh and is just very animated. I'll take what I can get.

How's Emma doing? I haven't had a chance to read your blog lately. Let me know.

Emma and Mommy Fri. morning

2009-03-13T10:37:00.000-07:00

Now she sees!!

2009-03-01T14:36:00.000-08:00

This is an email from my aunt who has 2 boys with ADHD . Everyone in my family can't believe the great changes in Emma and started to tell her how and what we did। She started to ask what it was so I sent her the countless pages of info I have found। Well I don't have experience with adhd meds but the way I understood it her Dr. told her to stop the meds during school breaks and she does. This time she thought she would hold off on putting him back on them and he has been back in school a week doing well. Then she sent me this:Interesting thing happened Friday night - I picked the boys up from school, ran errands, etc. Decided to take them to McDonald's - it's a place that's considered a special treat place, we haven't been for almost two weeks. Kristofer had two cheeseburgers, fries and milk. OMG - he was freaking' off the wall for the rest of the night!!! Amazing to see the difference because I never noticed when he was on meds. So McDonald's will continue to be a special treat place - once a month and not on a school night for sure!!!Amazing!!!

Last wee she said she was seeing a difference with fast food. This morning she sent this email Kristofer got an 88% on his science test and an 83% on vocab. He's gotten two D'S and one C on some reading response stuff - BEFORE I took him off his meds. How do you like that? I'm so excited and he feels so much better - and he looks better. Not that pale color. And his eyes are animated.That's so funny you say that about Emma - dreading the next episode. I feel like that with Alex sometimes. Not as often now. He will be next to come off his medicines, probably February vacation in 3 weeks. I got my Feingold stuff yesterday. I'm taking it to school today to look it over (I substitute once in awhile at Alex's school as the school nurse - wish it paid more because I love it!!).I'm telling you, you really should start a support group....and thanks for the pop tart recommendation.Love ya!!!

Before and After It's in the EYES

2009-02-24T06:20:00.001-08:00

Before the Diet Change Feb. 2008

This is her 7 months later, smiling. We went completely organic, what I am finding out is the Fail Safe diet is amazing and no dairy helped so much! In days the circles under her eyes started to fade and in weeks I got my first hug from her and in a few month we heard that happy baby belly laugh that most hear at 8 months or so she is 3yr 9 month in this pic

2009-02-23T18:24:00.000-08:00

Around spring of 2007 Emma who was never a cheerful baby who laughed or squealed, and smiled very seldom started to be very temperamental with an pitch that could make the hair on the back of you’re neck stand up, she was never and easy baby so we all just said “she knows what she wants, that’s good” Well just teach her boundaries and she will learn. She never liked being in the car even as a baby. We moved in June of 07 and she spent the entire 3 days screaming in that pitch that was so unbearable. Over the next few months she started these tantrums that would end up with her getting hurt and before I knew it, these tantrums where lasting all day. Emma was always hitting her head on something because she would just jump off of, jump onto, or throw herself at anything near her. Our family was consumed by her temperament and we couldn’t even take in public anymore, when we where still going places the frustration and the embarrassment was too much to be worth it. A trip to the supermarket always a chorus of Emma’s unhappiness from the time we got there until we left so I stopped bringing her. Like I said the tantrums where lasting all day so helping Theah with her homework was impossible. She stopped answering to her name more often than not and couldn’t sit still without a movie. At home she would spin under the table during dinner, we stopped trying to make her sit with us because the screaming could hurt you’re ears and we needed to eat in peace once in a while.
Around April of 2008 she was unbearable all day. Even hugs and kisses came with a head butt. Before I knew it we where al miserable and one day I realized she wouldn’t make eye contact and my heart sunk to my gut, she was gone it happened gradually over time and I suppose I hadn’t noticed how withdrawn she had become because we where always trying to get a moment away (wrong I know but a person can only take so much.) I began to think back and realized there where so many weird things she had developed, doors and drawers always had to be just the right way and at night she would scan the bed to make sure each and every toys was just right she must have had 15 on her bed and she always noticed when one was missing, the blankets had to be in a certain order and songs had to be in the same order or we would never get to bed. No attention, no fear, toe walking, teeth grinding, spacey or out of it, clumsy, runny nose, dark circled around eyes. So sensitive to noise although she was usually always loud and her vocabulary hadn’t grown in a long time.
I kept asking her doctor and she just kept telling me it was her personality but my heart was breaking watching her and our family struggle each day. So I went online and started typing in what I had been dealing with in her behavior and Autism kept coming up and I am like most people who only think severe autism was the only kind but I figured that if the behaviors’ where alike I would look further and found articles on nutrition. Thinking if the behaviors where the same why not try an organic diet it was the easiest way to start.
We changed her juice, milk, yogurt, and milk, the things she ate most. Emma didn’t like the organic dairy but was ok with the juice within days her nose started to clear up and she would actually interact with me. Her circles started to dissipate day after day things like baths and dinner weren’t a wrestling match most times and I could leave a room without a full on blowout. Then after about a week she was miserable all day screaming about everything nothing made her happy I didn’t understand and the Theah finds an empty Bologna package in her room Emma had snuck it off and eaten what was left half the package. OOHH! Ok so were onto something with the organics Yeah!!!!

12/29/08
Emma has been doing very well, We Noticed a huge difference in her behavior after citrus containing drinks even though they are Organic and I am pretty sure Cocoa is a problem too
This morning just going over skills like Right/Left ( she almost has it :) I also asked her name and she proudly and LOUDLY replied EMMAAAAA!!!!! And I said again what is you’re name… Emma what….. and she said 4 because she is turning 4 in a couple of days. So she is getting better but the open ended questions are still hard for her if she is even getting it at all
1/21/2009
Last week Emma started to have a red rash on her face I think it was eczema. Then she started to mumble to herself like all day, and now for three days she had been repeating “I just take one…there” over and over all day. It’s kinda freaking me out we haven’t changed anything in her diet so I don’t have a clue. *sigh* After about a week of this she isn’t doing it much anymore sigh of relief

2/17/09

Now…two weeks ago she had a cold that just wouldn’t go away and when the fever just kept coming back I finally gave in to the notion of antibiotics and made an apt. Her behavior was awful!!! But around day 8 of the Augmentin she finally started having bowel movements on the potty!!! This is still going on. It’s as if it just clicked.
Then we started cod liver oil and in just a few days it was as if she showed up in every conversation. When you ask her a question she looks up at you very mater of fact looks you in they eyes and answers you. Her movements are much more thought out and it’s like she can finally pay attention. This morning she was on the potty and pulled the toilet paper and said “it’s long like rapunzels hair” Now maybe I am looking for things but to me that full sentence about comparison was amazing!

Our Journey with Autism

2009-01-19T07:49:00.000-08:00

Our dd was always a little different from our first but we just kept shrugging it off until she was tantruming from sun up till sun down and getting hurt doing so. stopped answering to her name and then barely any eye contact. I freaked and I too started my “Google degree” that same time I read jenny McCarthy’s first louder than words and when she described the little behaviors It was like a wave of awareness came over my body because I was reading about her son and I very easily could have been reading about my own dd. The routines of toys in a certain order lined up before bed and the kisses and hugs had to be given it a certain order too. Doors ,drawers and so on. It was so bad I couldn’t help our older dd with her homework because I had to keep the miserable baby away. Her grades where slipping I wasn’t keeping track of her homework and her stuttering was awful. We couldn’t go out of the house and when we did it was dirty looks scaufs from old ladies and usually ended with me wanting to cry too.She wasn’t talking half as much as she was before and I was scared.
Durring all of this I had kept going to her Dr. pleading for some guidance and was vary firm about no meds but the Dr. kept saying it was her personality and so I started the feingold as well only the version I found was on fail safe. fedupwithfoodadditives.com. within days we say a difference and within a month she was learning again and after a few months at 3 1/2 yrs we heard her laugh and squeal for the first time! I should also mention that when we changed to the additive free yogert,milk and cheese she didn't like them so then we where dairy free. After all of this I was concerned about her vitamin D and such. Like most of us we where raised that milk is what we all need. The same Dr. said..."are you sure it's not you're attitude that has changed her?" I am astounded since first of all BITE ME! And second what does my attitude have to do with gas, runny nose and dark circles around her eyes?????? I also asked if she wasn’t drinking milk… being on an additive free diet I wanted to supplement and she said Viactive. So I ran out and bought it assuming that the Dr. knew what she was talking about. Then I looked at the ingredients wick are 90% additives. Hmmm ok so were done with her. We found a new office after I stopped a woman in the grocery store like a crazy person because her grandson was being really loud and she mentioned no sugar to him. Being a very lonely stay at home mom I kind of giggled and said "we don't like sugar either" she said well he has autism so we really don't. Normally I am a very passive person but somehow I had the courage to stop her and ask her who his Dr. was. I now this is a personal question to ask a stranger but at that moment she was so kind and even called her dd for the name of the office. Now I start to look like a crazy person even more because I started shaking and almost crying. I thanked her and she hugged me.
I called the Dr. office and made an appointment and saw him the fallowing week. Sadly durring all of my research in the past months and the timing of my dd's symptoms getting worse I had decided to hold off any more vaccinations until I could know for sure that she wouldn't get worse. That is all that dr. cared about he woulnd't even look at thre list of symptoms I brought with me. It did give me the courage to push on I knew now that I could stand up to Dr.'s and approach poor strangers out in public.
A few Dr.’s and a few month’s later I am in the waiting room at the mechanic. Emma is being soo good and sweet like she is these days and a mom asked me if she was always so good? My eyes filled up with tears and my heart was so full. I had to brag …I tried to keep it short since she didn’t ask for a story. But I explained that a few month back we couldn’t even take her out of the house that we where the people that always got dirty looks. But that we changed her diet and now she is this sweet little toddler with bright eyes. This woman told me that her son has autism and that they are doing a diet as well. She gave me her Dr.s name and number and I called but she wasn’t taking new patients. Her PA was though and I said I’ll take what I can get! When we saw the PA I came armed with my success and nearly a book of info and symptoms. She listened! She said “ if it looks like a duck I am not going to call it a zebra” Finally!!! I had read about allergies and asked for a test and she ran an IGg. It came back with over 20 things yogurt, milk and cheese being some of the worst. Ok so were on to something…….