Wednesday, December 31, 2008

Vision Therapy is great!!

We recently started Vision Therapy with the most amazing therapist Colleen. We've often had great therapists but she stands out. She's so patient and intuitive. She's also brilliant. She's constantly thinking of novel ideas to help Brady. We've seen a HUGE improvement in eye contact since he started VT. He'll look at you deeply and longly. Sometimes his gaze will brief but end with a big smile. Those are awesome and often bring me to tears. He's far-sighted and has various other vision issues so he wears glasses. He looks so freaking handsome in his glasses too!

Since he started VT he's trying to catch a ball. Before he would stand there and let it bounce off his chest. Colleen explained that to Brady the ball was two dimensional and that it looked like a paper ball coming at him and he didn't understand to catch it. Now he tries, often late but that's ok. You start somewhere right?! He also clearly enjoys throwing the ball to us. It's cute because he gets excited.

He's such a loving kid. He wants her to hug and kiss on him all throughout the session. He smiles a lot too. While it sucks he can't talk we consider ourselves lucky to have a child with autism who seeks our love and attention and a child who rarely, if ever, acts out against others in anger.

Look soon for a post on his Springboard Lite!
And coming to you tomorrow......PottyTraining! Wish us luck!

Angela

Sunday, October 5, 2008

Look how smart Brady is!!!!!!

So I was playing with Brady in the basement the other night. I had a magnetic board with numbers and letters. I thought I'd try something. I gathered up the letters for his name and put the B and the Y in place. I gave him the rest of the letters and he put them in the right spot. Afterwards I did only the B and he spelled his name!! YAY! Then I tried his numbers and he got 1-9!! It's funny because sometimes he'll go in the exact order, but sometimes he'll go out of order but always has them right in the end. You'll see what I mean in the first video.

Thursday, September 18, 2008

OH NO....POTATO CHIPS!!!!!!

No need for details. Just know that Brady was able to get his hands on some potato chips Wednesday at school. Within two hours of being home he had yellow mucousy diarrhea. I know it's TMI but the amount of mucous was crazy. I explained to Robin that Brady's gut was experiencing inflammation from the chips and the mucous was it's way of protecting itself.

This infraction told me one thing. We are on the right track with SCD. Sometimes slips like that are the reassurance that you need to know you're doing the right thing.

And I don't think that mistake will happen again.

Tonight he ate a tiliapi fillet fried with almond & cashew flour, and boiled carrots. He ate nearly all of it very willingly. I've been slacking in pushing more meats and veggies. I'm going to make a more concious effort of that starting tomorrow.

Friday, September 5, 2008

Moderate Fat in his stools

Possibly indicative of malabsorption. Most likely. I told the ped I did not think he was digesting his food.

However that will all change with SCD.

Saturday, August 30, 2008

We've been officially SCD for over a week!!

And 5 days into it we started having solid brown poop people!! Can you believe that?

Brady has had chronic yellow diarrhea for over two years now. Before GFCF the diarrhea was so bad it would come smooshing out his diaper. GFCF helped it get to pudding consistency but that's where it's been for two years now. I knew SCD was supposed to be great but WOW! I wasn't expecting to see results like that so quickly.

Now we're really excited to see what might happen next. Pray for language. All we really want is for Brady to talk to us.

Wednesday, August 20, 2008

Closer to SCD...

Today Brady finally drank juice. He stopped drinking juice probably six months ago drinking only ricemilk. Now he's drinking grape juice which is SCD legal.

The only thing between him and SCD now is his soy yogurt and quite honestly I could phase that out this week.

I will go back and do the intro for two days and then it's full speed ahead.

He also ate grapes!!!
And an Applegate Farms hotdog.

He's already balking at vegetables. I think now that he's realized he likes other foods better he'd rather eat them. I have to be careful that he doesn't start refusing them.

Tuesday, August 19, 2008

Thursday, August 14, 2008

4 year old check up

Brady had his 4 year old check up today. He pooped in his diaper while in the waiting room and I was thrilled. I saved the diaper after I changed him and shared it with his ped. I wanted her to see the kind of pudding/diarrhea poop he's had FOR TWO FREAKING YEARS! She asked if he was consuming dairy. As if not consuming dairy means you're doomed to a life of diarrhea. Do vegans have chronic diarrhea? Seriously. I asked for a stool analysis. It's clear he's not digesting foods. Ask me how I know?

She asked for my feelings on vaccinations. I told her we would not be vaccinating Brady anymore. I did ask what he was "due for".

dTap diptheria, tetanus, pertussis
polio
varicella chickenpox
MMR measles, mumps, rubella

4 pokes..............8 farking vaccines

I mean doesn't anyone think that's a lot of vaccines for one visit? If he had a reaction how would we know which one it was too? I told her the thought actually made me angry. There are mothers every day who bring their children in and do that. CRAZY CRAZY CRAZY!!

She tried to scare me just a little with the old measles and encephalitis bit. Seeing as how encephalitis is a listed adverse reaction from the vaccine I think it's a moot point. Seeing as how you can still get the measles even if you're vaccinated seems stupid. Seeing as how the measles ain't all that bad is even a stupider reason for getting the vaccine. I like the word stupider.

What I failed to bring up was the Hannah Poling case and mitochondrial dysfunction. So if it could happen to her, what about Brady? Wouldn't we want to make sure he didn't have MD BEFORE we gave him 8 vaccines? Or do we vaccinate him and say "Oh fuck, he's messed up even more. Let's test him for MD." But wait, the insurance company probably woudn't spend the money on a kid like Brady. You know a kid with autism. Them and those intellectually and developmentally delayed children aren't worthy of therapy and coverage. Assholes. EVERYONE is worthy of coverage.

Seriously.
I'll be expecting the postcard and phone call from the insurance company asking me why I didn't sacrifice my damaged child for the herd. FUCK YOUR HERD!

Nice mouth huh.
Don't care anymore.
I quit caring when I learned the truth.

Tuesday, August 12, 2008

Brady drank out of a straw!

Tonight Brady drank out of a straw for the first time. It was great. He's suprising me with something new every day. It's clear that eating well is improving his functioning.

We are ----->this close<----- to being SCD.

Then we are going to see some really amazing things!

These are pictures of a typical amount of food he'll consume now for a meal.




Monday, August 11, 2008

Success!

Can I tell you much I love the morning time just before all the kiddos get up? I sit at the computer with my coffee and it's so quiet. It's a chance to think about how cute and special they all are before they start driving me crazy.

This morning I had to get on here and make sure I documented Brady's successes. Here is a list of foods currently being eaten...

1. turkey
2. sausage
3. carrots
4. greenbeans
5. broccoli
6. squash
7. applesauce (favorite)
8. banana
9. peaches
10. SCD legal almond banana loaf (bread)
11. GF pretzels
12. Larabar (fruit & nut bar)
13. freeze-dried apples & pears
14. fruit leathers
15. boiled eggs
16. scrambled eggs
17. SCD legal almond pancakes

Can I tell you good it is to feed him? It takes nearly 35 minutes for him to eat an entire meal but I am loving it!!! We can't believe the sheer quantity of food he consumes now. I'll post a picture later today of one of his plates before and after a meal.

Also Brady peed in the potty last night!! I am optimisitcally excited because I swear he knew what he was doing. Because when I first asked him if he wanted to pee in the potty (just before bathtime) he stood in front of the toilet imitating his daddy. I giggled because he's too short and I realized O.M.G he's been watching and learning! YAY! So I picked him up and put him on the potty seat and nothing happened for awhile. Well except for Sadie trying to figure out what that is the big brother Brady has that she doesn't. LOL Then all of a sudden we had pee! Pee all over the potty seat till we guided it into the direction it needed to go.

I praised him like crazy and he grinned at me. I'm thinking he fully understood it all.

He's healing.
You can tell.
Slowly.
He's healing.

Wednesday, July 30, 2008

Feeding Clinic went well!

Geez, I suck at this blogging thing. I just have very little energy left at night.

So Brady went this past Monday and Tuesday for his feeding therapy with the C.A.R.D feeding specialist. The first half of Monday morning was UGLY! I sat in the floor with tears rolling down my cheeks. He fought it so hard. He ended up covered in food, sweat, and tears. It was terrible to watch. He'd gag nearly puking when they put food in his mouth. What they did wasn't novel really but what parent can do that to their own child? Not this mother.

After watching him she suggested we try pureeing all the foods for the afternoon sessions. That went sooooo much better. He fought the first few bites but then he was eating the food! Turns out Brady still has a strong tongue-thrust and he doesn't know how to chew food. Everything he has been eating requires very little chewing and nearly melts in his mouth. Four years old and can't chew food. It made me sad at first and then angry. Angry that not one other professional noticed this or inquired.

He was down to eating nothing but potato chips and soy yogurt. No one seemed alarmed. So we had to spend $2000 and get him help ourselves. I am happy to say that today Brady ate carrots, banana, applesauce, greenbeans, egg, turkey, and almond banana bread. All pureed but eaten all the same!

SCD here we come!!!!!!!!!!!!!!!! I can just feel good things for Brady this year. His eye contact has been out of this world. There are times when he literally has a stare down with you. And sometimes he'll look at you and get the biggest grin ever. It's so stinking cute.

Sunday, May 11, 2008

Thankful and angry.

I feel a need tonight to talk about how thankful I am for Brady and our other children. Brady has been nothing but a joy. We love that little boy more than life itself and we'll always thank god for all the blessings he's given us.

I wouldn't say that the actual autism is what's been so hard. What's been hard is getting the proper treatment and education for Brady. We would be able to focus so much more time and energy on loving him and our other children if there was more help available. His pediatrician thinks autism isn't something that can be medically treated. She's still trying to figure out why Brady has had diarrhea for the past two years because of course diarrhea has nothing to do with autism according to her. Whatever.

Then there's the educational piece. If you have the available funds your child with autism may get all that he/she needs. Those without the proper funds are left scrambling. Don't count on the school system to give them what's appropriate. Instead they will try and fit your child in their budget, in their little classrooms whether it's the appropriate placement or not. It doesn't matter if your child can't learn in that enviroment. They aren't going to spend more to give them what's appropriate, what they are legally supposed to do. It's really sad when I look at the surrounding counties and see what services children with autism are getting. I can tell you they are much better services than what my child is getting. The only way he'll get what is legally appropriate is to take legal action. And the schools bank on the fact that most families don't have the funds to pursue such action. It's wrong wrong wrong! They would rather spend the money on an attorney than spend it on your child. Believe it people.

Sometimes in life you have to make a point. You have to take a stand and defend what is right. Sometimes you have to force people to do the right thing. That time in life is NOW! My son will not ignored or written off. I will not be railroaded. I am not scared. I am determined. There is nothing stronger than a determined mother who is defending her child. Lookout.

Sunday, May 4, 2008

Ah-kul....means tickle in Bradinese!

I am so excited! Brady has been using two words spontaneously.....go and tickle. It's too cute. He can't articulate tickle too well so it comes out ah-kul. And boy oh boy does he like to be tickled. He said it to me spontaneously today while looking me directly in the eye. I thought I'd jump over the moon with happiness.

Go Brady!!!

Monday, April 21, 2008

Great workshop!

So Stafford County Schools invited James W. Partington, PhD.,BCBA to come present two workshops. Today's workshop was Teaching Language to Children with Autism and Other Developmental Disabilities. He is a great speaker. He's capitivating and easy to get. He said some very interesting points today that really struck a cord with me.



I've never felt Brady's preschool class was the right placement for him. The teacher is wonderful however she has other students to teach. She cannot follow Brady around and break everything down into discrete trials like he needs. The other children are great. The peer models are cute and they try to engage Brady. The problem is basic really. Brady lacks the language skills to learn and socialize in the classroom.



Some very key things that I keep replaying in my mind.




  • What does he need to learn?

  • They tune out when what they hear has no functional value to them.

  • Teach functional skills...Why teach him something he doesn't need to know on a daily basis?

  • Brady isn't repeating what his peers say. If he can't repeat them he can't learn from them.

  • If they're not looking, they're not learning.

  • When education providers are taught a little bit of different methodologies treatment gets "watered down". (his words)

  • It's not good enough to just sit in circle time.

He brought up the study that supported that children who receive intensive ABA treatments improve significantly more than those who receive an eclectic program. Remember, my county invited him to speak. Also remember that my county has told us that there are studies that claim that eclectic programs are better. He has supported what all the professionals have recommended for Brady yet the school has refused to offer such services. Doesn't the irony make you want to laugh and scream all at the same time?


Let's add to said irony. Last Thursday the Parent Resource Center asked a well-respected developmental pediatrician to speak about autism. he said that the only proven effective method for teaching children with autism is ABA.


Laugh some more. Scream some more.

Thursday, April 17, 2008

Can't you just do your job?

Why can't I get people to call me back? This is life when you have a special needs child. You spend half of it on the phone when you could be spending time with your kid. You call to schedule an appt, a very important appt. They say they'll call you back. They don't. You call and leave a voicemail. Then another. And yet another. Finally someone calls you back. It's ridiculous. I am waiting on 3 different places to call me back with dates. I need to schedule an IEP and I can't because it's contigent on those appts.

Monday, April 14, 2008

It's not fair that money controls it all!

It's so sad and frustrating that we don't have the money to do everything we can for Brady. We've sunk into a hole of debt that's scary and strangling. It's a disgusting injustice that the insurance companies and school districts aren't providing what they should. They each point the fingers at each other while the children are falling further and further behind.

I worry about running out of money to continue all we're doing for Brady. I dream of a wealthy person deciding that they would love to help Brady out and donating a large sum of money to his recovery fund. It would be such a relief to not worry about how to fund ABA, biomedical treatment, and therapies like the feeding clinic.

It's not fair that how much available credit you have determines your child's future.

Going SCD on Brady!

Sounds funny doesn't it. I wish I could talk into a taperecorder during the day and then plug it in and have it update my blog for me. By the time I'm able to get on here at night I'm exhausted. Most of the time too mentally exhausted to type out my thoughts.

Like I haven't blogged about the DAN! conference. I love going to them every year. They renew my fighting spirit and I always learn something new. This year I found out that there is a feeding clinic not too far away. So I've spoken with them and we're in the process of getting started with that. I'm hoping we can get the insurance company to pay for some of it. Brady's eating is terrible and it makes my heart sad. He's eating for two....him and the freaken yeast parasites living in his gut.

We're never going to kick the yeast to the curb once and for all until we change Brady's eating habits. He's sustaining himself on potato chips, Tings (sorta like a chip but made from corn), and a soy yogurt he'll eat occasionally. See....total yeast food. I describe Brady as an addict and the yeast is the drug. They have to have their fix as well so they make Brady crave the carbohydrates and sugar. As long as he gives them what they want it's all good.

So that's where SCD comes in the picture. It's the Specific Carbohydrate diet. This says it way better than I could....

WHAT IS THE SPECIFIC CARBOHYDRATE DIET?
SCD is the autism diet that is in accord with the latest scientific findings. Research confirms that gut pathogens (the microorganisms in the gut) cause digestive and brain problems. This research has established that gut pathogens can damage the GI tract and impair the brain function of autistic children. It attests that harmful gut pathogens survive because they feed and thrive on carbohydrates that are difficult to digest. When SCD eliminates the pathogens' favorite carbohydrates, it starves them out. They can no longer live and continue destroying our children's guts and brains
.

Brady had said up to 60 different words at one time. But something has happened and it's like he's unable to say them anymore. I can't tell you how much that scares the crap out of me. How can we be losing words???!!! We waited for so long for all those words and now all we get is "go" and "bye"? For some reason it didn't dawn on me till a fellow autism mom mentioned it. The yeast has stolen his words. It might sound crazy to the typical person but in the world of autism yeast is a mighty beast that can impair your child's brain just sort of the way a vaccine can. It's scary crap and it's hard to beat. Antifungals just aren't doing it. We can keep taking the antifungals but the yeast is constantly being fed so it's going to continue to thrive.

Now the first few weeks of SCD are going to ugly, and I mean ugly! Brady's going to be like an addict coming down, falling hard. The SCD diet is our version of intervention. He's got to start eating vegetables, fruits, and god forbid meat. We always joke that he's a self-imposed vegan minus the vegetables.

So I've ordered The Gut and Psychology Syndrome book, and a yogurt maker. I bought a whole organic chicken, organic carrots, and organic pears today. I'm going to prepare all those and then freeze them in daily portion sizes. That way by the time we start the diet I'll have the food cooked and ready to go. Who is going to have time to cook when your cute little addict is jonesing for some potato chips and you have to keep him from tearing the house apart? But you know what? I welcome that kind of behavior because I will know for sure we're doing the right thing.




Tuesday, March 18, 2008

Pic and a vid!




Dr.Kaplan






We had our visit with Dr.Kaplan last Thursday. It was an awesome visit that left us feeling extremely hopeful and optimistic.






We explained to Dr.Kaplan that Brady had sugery to repair his strabismus (lazy eye) when he was 18 months old and how he changed so much after. You could tell that Dr.K was annoyed that the doctor decided to operate on Brady so young. He also explained to us why Brady changed so much. We assaulted Brady's vision when the operation was performed. When Brady woke up we had changed his visual perception so much that it caused him to overcompensate for the damage done. See, the surgery only results in a possible cosmetic correction. We thought it was going to fix Brady's eye and return him to binocular vision. Not only did the surgery not restore his binocular vision it also did not align the eye for cosmetic effect either. Instead it skewed our little boys view of the world and put him in an alternate world in which he was put on permanent defense mode. Brady only sees two-dimensionally. He also cannot seem to process two different inputs at the same time such as visual and auditory. When Brady appears to be *watching* TV, he actually isn't. Dr.Kaplan pointed out that Brady is avisual choosing to hear the video rather than watch it. At times when Brady wants to try and watch it he will cover his ears so that he can process the visual images. No wonder Brady has difficulty in therapy and in life. How many times have we insisted on eye contact when trying to get him to speak. Can you see now how much more difficult this would make it for him to speak? Can you imagine how hard his ABA program must have been for him trying to hear the prompts while looking at the cards?






The initial exam was difficult. Brady was not tolerant of any of the glasses or disruptive lenses. When we would put them on him he would quickly look around showing us that he saw things differently. He then immediately ripped them off. When we put them on and held his arms to walk him around the room he would buckle his legs and cry. Dr.Kaplan explained that Brady had learned to compensate so well for his visual defects that opening up to change was scary for him. He said that we may have to wait on the prism glasses and take home only the disruptive lenses. I was so disappointed. I knew Brady had lots of problems with his vision and I was eager to help him. So they sent us to lunch after Dr.Kaplan showed me how many vision issues I have myself.






During lunch I asked (read begged) Brady to please wear the glasses when we go back. I explained to him how important they were. If only the kid loved money or toys the way typical children do, I would have bribed him. So we went back and by golly he wore those darned disruptive lenses. Dr.Kaplan smiled looking so pleased. He knew all along Brady was going to give in. Dr.Kaplan has been doing this for 30 years and when he makes a prognosis it's one you feel like you can lean on. He told us that in 3 months Brady will be a much different child. He said in 6 months he'll be talking. Did you read that? He said "TALKING". I started tearing up. You could just feel that he truly felt it. Do you know what it's like to have something so amazing said to you? Do you know how scary and awesome it feels to know that you may very well get what you've been hoping and praying and begging for so long? It actually made me feel nauseous.






So we ordered him the cutest frames ever. Of course Brady is so stinking cute he can even make the disruptive lenses look good and here's the proof. I mean come on, how cute is this kid?!






Checking out the toys

It's weird posting here because sometimes I think no one really reads it and I'm kind of talking to myself. That's something I do often. I just don't typically put it into print.

Anyhow being here in Lynchburg with the three kiddos by myself is wearing me out. I joke you not when I say I have to vaccuum like 6 times a day. I change an equal amount of poopy diapers. Not just standard poopy diapers, cloth poopy diapers. HBOT is going well. Brady's eye contact is great! His receptive lanuage seems to have improved as well. I told him to take off his jacket the other day and by golly he did it. He's even responding well to "sit down and take off your shoes". Today we went to a store that sold books and toys. I loaded Sadie and Brady up in the double stroller. Typically Brady is content to sit in the stroller but today it was different. He climbed out of the stroller and was investigating the toys. He walked up and touched some of them. He also put his mouth on the wheels of some of the cars. He just couldn't resist. He even seemed like he actually wanted one of the toys, a school bus that was also a shape sorter. I worry so much about lead tainted toys though. He lost interest so I put the overpriced toy back. But the fact that he was looking was great.

Thursday, March 6, 2008

Unexpected benefits from HBOT.

Brady's diet has always been narrow. But the last 6 months or so it's been really bad. He was down to three things and lived mainly off of potato chips.

Since we've starting HBOT he's eating 3 new foods. That's double! First he walked me to a box of Nilla Wafers. Hasn't had those in nearly 2 years. So I gave him some enzymes and he chowed down. Then it was popcorn. And now he's eating his soy yogurt again. YAY!

I'll admit that I used to spoon feed it to him. But yesterday he fed himself. Take a look.

http://s250.photobucket.com/albums/gg245/recoveringbrady/?action=view&current=MVI_0201.flv

Tuesday, February 26, 2008

HBOT boy




HBOT...4 down, 36 to go!

So here we are in Lynchburg at Dr.Mumper's. Brady did his first two dives yesterday and two more today. He has been great too. We aren't forcing the entire hood yet. For now we make him wear the ring which he is suprisingly tolerating it very well. Today in fact he went over to crawl into the chamber on his own accord. I laughed. Inside he gives no indication that he's feeling the pressure change. He happily watches his Spongebob DVD. He is content to watch the menu most of the time. Today he rewound it to the opening song so that I would sing it over and over. He makes the most amazing eye contact when we sing to him, with a giant smile to boot. It's amazing and I could drown in his eyes.

Sadie and I are going in with him. I've timed it so that we dive when she is tired so I nurse her during the pressure changes and she sleeps between them. She's great in the chamber. As well as the dives are going the thought of 36 more is daunting. I wish it weren't so many. I miss home but I think this is going to be AMAZING for Brady. I'm super excited about his upcoming appt with Dr.Kaplan.

Robin and Drew.....we miss you guys!

Wednesday, February 20, 2008

Brady had the flu for a week. On Monday I took him to the ped because he had a fever for 6 days at that point. They checked his ears and they were infected. Superb! The first ear infection of his like happens one week prior to him starting HBOT. He can't do HBOT if he has an EI. The doc presribed an oral antiobiotic but I knew he wasn't going to take it. I called them the next day and requested an injectable antibiotic Rocephin. They were hesitant but we needed that ear infection gone. So he went on Tuesday and got the first dose. They had to split it into two syringes so he got one in each thigh.

Brady seemed better today. I took him and got his haircut. I'm trying to discourage him from twirling his head bald. Did I mention that he twirled the hair on the crown of his head so much it created a bald spot? Best cut yet. He cried but sat there *mostly* still. The lady cutting it asked if he was only *mildly autistic*. They always ask me that there. She said she thinks he's mild because he's ok for his haircuts. As though the scale for autism is based on haircuts. LOL BUT....she did mention Jenny McCarthy and seemed to understand the relationship between toxins and autism so that was great.

Brady went back today for his second dose of Rocephin. I had to hold him down for the dose yesterday and it broke my heart. It took me back to all his vaccines and I wanted to hurl. I wanted to throw my arms around him and tell him how sorry I was for doing that to him and how I wish I could change things. How I wish he didn't have to struggle so hard now because of the choices *I* made for him. I know guilt only strangles and can't change things but sometimes I need to feel that guilt. Some days I wish so badly I could turn back time and undo the damage done to Brady.

Monday, February 18, 2008

In your face!


I'm getting kind of in your face with my radical beliefs. I can't help it. I feel so strongly about certain things especially the poisoning of our planet and particularly our children.


Here's how in your face I'm getting.

Sunday, February 17, 2008

Still better than the flu shot!

Oh man. I haven't posted in some time. Our family has been hit hard with the flu. It started last weekend with Brooke. She never spiked a fever but layed on our sofa most of the weekend. And we suspected something was up with Sadie as she was not eating like normal. And normal for her is lots of food, especially mushrooms. The sad thing about this is that last Saturday was Sadie's 1st Birthday! Can you believe it? Our baby girl is one! More on that in another post.

So she wasn't feeling well. She started spiking a fever and coughing. You could just see the sickness in her eyes. Then Tuesday morning I fell and fell hard. Oh my gosh I felt like crap. And I still had to take care of Sadie and Brady (the 80's as I call em). Then when I picked Brady up from his ABA session on Weds they said he was falling asleep during his session. I knew then that he was next. We came home and I took a nap with the 80's. I heard Brady whimpering as he drifted off. The next few days were hell. Thursday was my birthday and Valentine's. I was too sick to care. I ended up taking Sadie to the Urgent Care Clinic on my birthday. She had been fairing the flu very well but the Wed night and Thurs all she did was sleep and cry. Nothing made her happy, not even nursing and that's saying something. Sure enough she had an ear infection. Now while I know ear infections can run their course and resolve, I know having the flu and ear infection is miserable. I also know being the mommy with the flu taking care of two kids with the flu I needed some help. We chose to give her the antibiotics and double up her probiotics.

Brady has been running a fever pretty much continously. We've been using suppositories to keep his fever down and to help with the body aches. This is actually a pretty awesome thing. For the first three years of Brady's life he NEVER EVER ran a fever. He never got sick. His immune system was too depressed to actually run a defense. So the fact that he is getting a fever and sick is good news. Things are starting to work. The things we are doing for him are working!

Now I'm behind in getting ready for HBOT. I can't believe we start diving in a week. Thank god the flu hit this week and not next week.

Wednesday, February 6, 2008

Avoiding chemcials and cloth diapers...

We cloth diaper Sadie and I actually thoroughly enjoy it, even making some nice bamboo velour prefolds myself. I feel good about my efforts to keep our landfills free of disposable diapers. Cloth diapering is easier than I thought. I am currently in the process of switching Brady over to 100% cloth. His skin is *super* sensitive and he reacts strongly to chemicals especially those in disposable diapers and pull-ups.

In general we try to limit his exposure to chemicals as much as possible. I just ordered him two organic pillows. He recently moved to his big boy bed and I plan to get him an organic mattress for that as well. I use biodegradable and enviromentally friendly detergents and cleaning products. We run an air purifier in his room. I have this dream of creating a green-zen-like bedroom for him with bamboo floors and blinds. A nice organic wool rug. Ahhh! It'll happen but slowly. Unfortunately it's expensive to do these things. I have more to say on the chemical front but not enough time. I need to go get the kidlets ready and take Brady to ABA.

Getting nervous....

Less than 3 weeks until HBOT and I'm getting nervous. Not so much about the actual dives but rather taking care of all three kiddos by myself. Sadie and Brady as we affectionately call "the 80s" can make an ordinary day very very long.
See I'm a crazy mom who will do all sorts of crazy things for my kids. HBOT isn't really crazy but moving away for a month and spending the money to do it is.

Brooke will be taking a hiatus from school to go with me. She just can't live without me and her teacher is all for it. We will have to officially un-enroll her but her teacher is going to send her work with us so Brooke can stay on track. She's made amazing grades this year and will be fine.

We are all allowed to dive together if we choose, even the baby. The only issue is the pressure on our ears. I figure I will nurse Sadie and that should help with that. Of course if Brady is ok he could dive with just Brooke some times. I of course am worried he is going to go buckwild on me in there but many times he's surprised me.

It's going to be very interesting living away from home. I know I will miss home. I will miss Robin and Drew and our goofy dog Charlie. But I've learned that you have to make sacrifices in life. It's only for just over 4 weeks and we can come home on the weekends. It's a 3 hour drive.

Pray for awesome results!

Thursday, January 31, 2008

I wanted to say...

Brady's ABA center has a receptionist who is more than a receptionist. I think of her as a member of Brady' team cheering him on and praying for him. I don't think she realizes (I think now she will) how her words have picked me up and supported me when I needed them. She has seen me in moments of sheer joy at his accomplishments and she's seen me in tears overwhelmed and falling apart. She genuinely cares about all the children who attend the center and she cares about the causes of and treatment of autism. She's always reading a new book, article, or study. I'm starting to worry about my own research because sometimes she's a few steps ahead of me. -chuckle-

Anyhow Michele....thank you. I'm thankful for you and your participation in Brady's recovery.

~Angela~

Wednesday, January 30, 2008

How cute is he?


I love this picture. This is the night I bought the glasses for Brady to get used to. He actually smiled at first but of course quickly yanked them off.

Tuesday, January 29, 2008

Firstly I have to say that we are so lucky to have Reaching Potentials. Today I had a talk with Mrs.G and she is going to modify Brady's schedule a bit to help us with the costs. What a relief! Thank you!!

One of the things I love so much about them is that they truly and honestly love Brady. They hope and pray for him just like we do. They are invested in seeing him succeed. They've always been here for us. I completely trust them with Brady and know he is in loving (but stern when need be) hands.

Another thing is that Mrs.G runs an excellent program. She has high standards for our therapists and knows how to pick the right ones. I always joke because not only are they awesome hard working girls but they are darned pretty too.

Exciting things coming up!!

On February 25th Brady is starting HBOT at Dr.Mumper's facility The Rimland Center. We are really excited. The studies yielded some really exciting results. We're hoping Brady responds well.

On March 13 Brady has an appt scheduled with Dr.Kaplan. He's a behavioral/developmental optometrist. He has been working with children on the spectrum for a long time. Brady has strabismus or commonly known as lazy eye. I hate that term because his eye is *not* lazy. At 18months Brady had surgery to align the eye. At first it seemed to work but then his eye wandered off again. Not only that but Brady changed a lot after his surgery. I believe that Brady responds very negatively to anesthesia. The static concept is visual dysfunction is a structural problem. A more accurate paradigm recognizes that vision is a dynamic process, which controls the action of the entire body and , in turn, is influenced by feedback from other sensory systems.

Many of Brady's behaviors are most likely attributed to his vision. He has lots of visual stims. He likes to look at things out of the corner of his eyes, or odd angles. He moves things in unusual ways to look at them. Loads of toe-walking. I really feel (and hope) that Dr.Kaplan is going to help Brady in a huge way. We are anticipating Brady will get prism lenses. He currently has a program in which he tolerates wearing glasses in his ABA program. I'm so worried he won't wear
them.

Sunday, January 27, 2008

Oh the fights we have...

Sure sometimes we have the same typical fights typical couples have. But we're not typical. I really think we quit being typical when we found out about Brady's diagnosis. We never get out together, unless we have a kid with us. We nearly always talk about stuff autism related. Right now autism is the driving force in our life. I mean it impacts everything about our life. Getting out just doesn't happen. I often make a joke about Sadie's surprise conception and birth. "It's the only thing we do for fun anymore." That's when anyone has the energy.

Before I tell you about the argument I must tell you that Brady still drinks bottles. At 3.5 he will still drink them and quite honestly we're thankful. Otherwise we wouldn't be able to get all his supplements and protein in him. What food he does eat contains practically no protein. Right now he's refusing to drink his juice cups. He'll only drink bottles of rice milk. He'll flip flop again at some point. Typically I make up all his bottles for the day in an assembly line filling each one with his assortment of supplements. On the weekends however I don't and Robin typically gets up with Brady in the morning. At some point in the day I asked Robin if Brady had gotten his anti-fungals or DMG. Then an argument insued about how I didn't have a chart on the fridge and I argued he should have asked. At that point in time it was too late in the day to catch up. It's not like I've ever forgotten. It's just so easy to get mad at each other over such things.

I am thankful for Robin though. He doesn't ever flake out of changing a poopy diaper and we have LOTS of poopy diapers in this house. He is the one Brady is always dragging around. I can't tell you how many times a day Brady *asks* (nonverbally of course) Robin to swing him. Or pick him up so he can get something out of reach. And sometimes quite frankly it gets old being dragged around. Every time Robin sits down at the computer to try and draft a letter to the school Brady is grabbing his hand off the mouse. It's hard to get anything done in this house between Brady and our resident high needs baby Sadie. And there is always a letter needed to be drafted, or a book that needs to be read, or something needing washing or researched. Sometimes Robin and I feel like we could drown in our list of "to dos". It would take 6 parents to do our job. I certainly know it takes 6 salaries to cover what we need to do.

Thursday, January 24, 2008

HIS BIG BOY BED!!

Brady slept in his crib with a crib tent until recently. We thought he'd be in his crib for some time because he seemed cozy and content in there. One night two weeks ago on a whim I encouraged him to lay in his twin bed as he was getting ready for bed. It was so cute. He crawled in and then got this big old smile on his face like........this is cool. He has been sleeping there like a big boy ever since.

Now this kind of made me sad. I sometimes wish that Brady could be this little boy forever. Robin however was happy. He wants Brady to grow up like he should be. Perhaps the future just makes me nervous. I have so many hopes and plans for him.

Now I need to get him an organic mattress.

The financial woes get worse!

Anyone with a child with autism involved with ABA or biomedical can relate to what I'm about to share. What I really really need is MONEY!! It's so unfair that next to nothing to is covered by insurance. We've been lucky in that the only real help we've had has come in the form of beautiful scholarships from the center Brady attends for ABA. Without those scholarships I don't know where we'd be. I guess deeper in the sea of debt we are currently treading in. We've been treading for awhile now and we're getting kind of tired. But what are we going to do? There's nothing we can quit. Everything we're doing for him right now is working!

See today has been particularly difficult. We've been lucky enough to have financial support in scholarships for many many months now. Unfortunately those funds are gone and we are now in a position in which we need to pay full price. I ask you. What would you say if someone told you that you needed to pay nearly $900 a week for your child to have a future? That is the question before me today folks. And mind you that's just for the ABA. What about the costs of the biomedical treatments we are providing Brady? The special foods? It all adds up to a scary sum of money.

We are presented with such things all the time. This is one of the most difficult things about autism. You are forced to make such huge important decisions for your child all the time. Not every once in awhile like with typical kids but all the time. It's exhausting and scary. You don't always know what the right decision is.

All we know is that Brady has made amazing progress in his program and we have to keep keeping. If only we could win the lottery.....