March 3, 2009
This morning I got a phone call from our adviser at Child Serve (where Gav has speech therapy). She has been SO helpful in directing us to various funding sources since our darn insurance won’t cover it. She had just received word that Gav had been accepted for Title 19 (which I mentioned in my last post). I told her we were aware of this news, but I wasn’t sure what Title 19 would cover. Is it just medical? Is it for other things……..like speech? (I asked, crossing my fingers). She said it WOULD cover speech and then I asked if she knew how much it would cost us per session. “$2, $3, no more than $5.”
CAN YOU BELIEVE IT? I almost fell over when she said that!! So, because of this wonderful news, we will be enrolling Gav in another speech session during the week (they say 2 times a week is best) AND he is now on the waiting list to begin OT as well!
December 10, 2008
It’s been a great day, actually. We started off with everyone waking up at 7 (yes, Gav couldn’t fall asleep until 10pm last night which was bad, but he never woke up in the night so we actually got a solid night’s sleep).
We had our second counseling appointment with Grace today and again I have to say how good she is with Gavin. She is so very sweet and get this, she teared up when she heard Gavin talking. He never said much at our last appointment a month ago and this time he was much more talkative (because of the diet, I believe). How sweet of her to care so much that she started to cry!
She also gave us the names of other natural supplements (5-HTP and valerian root-I’ve not heard of either) that may help Gavin stay asleep at night. I could have kissed her! She also agreed to write up a medical diagnosis for Gav’s autism, so hopefully that will help our cause when battling our insurance company.
Everyone’s just been really happy today and I think we’re finally getting over the worst of the yeast die-off.
I finally know what to get everyone for Christmas and that’s a huge weight lifted off my shoulders. And, one of our oldest, dearest friends in the world is coming to stay this weekend and with him comes rest, relaxation, lots of laughs, and probably a good movie . I’m looking forward to just hanging out this weekend and setting Christmas aside just for a few days.
Yay for happy (melt-down free) days!
November 15, 2008
My lovely sister-in-law Julie works for Imagine Nation in Boulder, CO. She has access to TONS of great educational books and games. She came to my rescue yesterday when she sent us a package full of VISUAL tools to help Gavin with numbers, words, colors, etc, etc. The best thing is that there are many different uses for each product so these will keep us busy for a long time. Thanks so much, Jules!
November 11, 2008
I totally forgot to blog about this yesterday, but Erin Kiernan on TV13 is doing a 3-part series on Autism and Insurance this week. (The first segment aired last night and can be viewed here. Sorry I cannot post this directly to my blog. Scroll to the video portion and click on Investigation: Autism & Insurance). This new piece comes at a very appropriate time in our journey because we recently received our first insurance denial letter last week and I’m sure there will be many more to come.
Gav’s speech teacher at school told us that due to the large number of students she sees in a week, we should probably consider getting outside speech therapy for Gav. That sounds good. What could be more beneficial than a private tutor once a week? Well, I called our lovely insurance company who has been pretty good to us thus far (remember we even got a reimbursement a while back) and was flat out denied on the phone. The lady wasn’t rude, per se, but she wasn’t really sweet about it either. (Think she gets that question a lot from parents with autistic children? Personally, I think she’s sick of the phone calls).
I then called ChildServe (a private organization who works with special needs children). The sweet lady there called our insurance company for me again (she knew better lingo) and was also denied on the spot. A few days later, I then received a very official letter from our ins. company stating: “In your case, speech therapy is a specific benefit exclusion as treatment for disorders relating to learning, motor skills, communication, pervasive developmental conditions such as, but not limited to, autism“…blah, blah, blah. It goes on to say, “The reason that this request is not approved is expressive language disorder falls under developmental delay and is a specific benefit exclusion.”
Now we begin the appeals process. The lady at ChildServe said the only thing we can do is to continue to appeal. She said some of her clients have actually had luck doing so. Just one more thing for me to add to the to-do list. The down-side is that speech therapy is EXPENSIVE if not covered by insurance, but I don’t really feel like it’s something we should deny Gav of. So, there goes Christmas. Detox spray and speech. Woohoo!
In other news, the new bedtime routine did NOT go well. Josh was gone and the boys joined forces. We’ll see what happens tonight when he’s home to lay down the law. 🙂
November 10, 2008
Today we took the next step with Gavin and had our first behavior counseling appointment with Grace Percival. Grace came highly recommended because she works strictly with autistic and Asperger children. Her waiting room and office were a dream come true for any child. It was bright, colorful, and FULL of fun toys. We could have stayed all day. Grace herself was wonderful with Gavin and was very helpful even on this initial visit.
She confirmed my thoughts on Gav being a visual thinker and encouraged us to create a PECS book (picture exchange communication system). School had recently developed a book for him, but the pictures are line drawings printed from a computer program and may be very hard for a visual learner to decipher. I now have the task of taking digital pictures of Gav’s world and creating our own PECS book for home. She also thought it was a good idea to develop a schedule (also something he uses at school) made up of pictures. Since our days vary depending on school, this should help Gavin know what is expected of him each day. Our goal is to alleviate the meltdowns and aid Gavin in telling us what is bothering him.
She also had a good idea for the whole getting out of bed a million times thing, so I’m going to try that tonight. (Unfortunately, Josh has to work late because of our appointment, so I’ll be going it alone). Keep your fingers crossed!
Another issue I’ve been struggling with lately is whether or not we need to switch DAN doctors. Each doctor can only take us so far and lately I’ve been feeling like we may need to go another direction. Grace also mentioned that and we shouldn’t hesitate to try different ones (unfortunately, the next closest one is in Omaha). We still have a few tests that should be run through our current DAN doc, but after that I’m not so sure. The next biomedical step we take is metal testing. I’m very interested to see the results of this test. If Gav does have high levels of metal-which he most likely does (from vaccines) we will have to begin chelation therapy. For him, this would just consist of a mouth spray once to several times a day. (I find it so interesting that you can detox metals this way!) This test is pretty expensive, as is the spray, so it’s lookin’ like we’ll have to push that off until after Christmas. What kid wants to get detox spray in their stocking?!!
Well, I’m off to take pictures………….
November 8, 2008
So I’m in the middle of reading Thinking in Pictures by Temple Grandin. Temple is an animal scientist, has a PhD, and she is autistic. Her book is an amazing portrait of how she thinks. It has opened up a whole new window into Gavin’s mind and how he processes information differently than the rest of us.
Gav does not think concretely. Those concepts are completely lost on him. Temple points out three categories of specialized brains. First, there is the visual thinker. Children who are visual thinkers often have a hard time with concepts like algebra and foreign languages in school. They are more gifted in art, building, and visual type learning.
Second, there are the music and math thinkers. These type of thinkers think in patterns and numbers instead of images. They generally tend to be good at music, engineering, computers, physics, etc.
Third are the verbal logic thinkers. These people think in word details. They love foreign languages, stats, lists, etc. Often you hear of children with autism who have an uncanny ability to spout sport scores or odd facts (think Rain Man).
An interesting thing that Temple points out is that children with speech delay (Gavin) are usually visual or math thinkers. After reading this portion of the book, I would definitely say Gav is a visual thinker. That would explain why he learned the entire alphabet at 15 months. We had the little magnetic letters on the fridge that he played with constantly. That also explains why we’re having a hard time teaching him to count. We just count, there is nothing for him to look at or touch.
Another classic example of Gavin being a visual thinker is his word association. Since moving to the new house, anytime we’re out and I say we’re heading home, he freaks out. “All done with go home,” he always says. BUT, if I say we’re going to the new house, he’s fine. Now I understand the freak out. When he hears the word “home”, the old house is the image his brain pulls up. I don’t know if we’ll ever be able to call the new house home. I have no idea how to change his word association yet. I guess that’s the next step. But, now that I know how he thinks, that better enables us to teach him at home. I suddenly have to get really creative (something I am not good at!)
November 6, 2008
Imagine watching your child climb up a flight of stairs. He slips on a stair and cuts his knee open and begins gushing blood. The cuts are deep, and you immediately wash away the blood, wrap up the knee, and head to the hospital. Once you get there, the doctor asks what happened. You reply, “He climbed up some stairs and fell and got hurt.”
Now imagine the doctor telling you that it’s not possible that your child got hurt from the stairs. “But I saw him climb the stairs and fall and I saw his knee split open,” you explain. Again, the doctor says it’s not possible. And you repeat, “But I saw it happen!”
The the doctor tells you that climbing up stairs is safe. But you know what you saw with your own eyes and so you insist, “But obviously sometimes it’s NOT safe. Look at my child. I saw him get hurt!” The doctor just keeps shaking his head and denies that stairs could ever harm a child.
This is how black and white it is for us moms who have children with autism. We had healthy beautiful children who climbed up stairs perfectly until one stair caused them to fall. We have witnessed the neurological downfall of our children after certain vaccinations, but when we tell the doctors what we saw, they don’t believe us. Can you imagine how frustrating that is?!
Let’s take the stair scenario a step further. After the doctor rejects your claims, you decide to treat the wound yourself. You learn about natural and alternative treatments, which you try out, and your child’s knee heals to the point where you can barely see any marks. Now imagine you go to the doctor for a follow-up visit and this time you see a different doctor. The doctor looks at your child’s knee strangely and says, “This must be the wrong knee.” You explain, “No, this is the knee that split open.”
The doctor says, “It can’t be because it healed up. There is no way an injury like that could heal. The hospital must have mistaken the severity of the wound.”
You reply, “No doctor, I healed the wound myself by cleaning it out and treating my child with natural remedies.” The doctor then looks at you strangely. He begins to laugh at you and tells you that your son never really had an open wound to begin with. You stand there with your mouth open. “Yes he did, doctor. Take a look at the medical records. He was seen in YOUR hospital!” The doctor replies, “It must have been a mistake on his records. He never had a wound here.”
This is exactly how it is when a child with autism gets better. No one believes he had anything wrong with him to begin with. People think these recovered children were misdiagnosed. The reason recovery is controversial is because we are healing these kids by treating the injuries caused by the vaccines or the environmental toxins rather than the autism itself. When we treat these things, the symptoms of the autism get better. The medical community is terrified to come within ten feet of detoxing metals out of these kids because it will point a finger DIRECTLY at what everyone is so scared to admit. Vaccines CAN trigger autism.
There are two controversies about autism: first, the causes, and second, whether children can recover. A battle is raging in the medical community, but there is a growing army of mothers who are fighting for their children and witnessing recovery first hand. Imagine a world in which we are all fighting on the same side to help make children with autism better. The time to unite is now.
(Taken from Mother Warriors by Jenny McCarthy)
October 29, 2008
Oh dear, oh dear. I have finally found a minute to get back to my research and it’s not looking good for Mr. Gavin. The TACA (Talk About Curing Autism) site has been my go to place every time I have a question/issue. Since I’ve been feeling like some regression has been taking place, I wanted to see what I could find out. There’s an article titled “What is It? When Something Is Going On, Strange Behaviors, A Plateau, An Old Self Stims”. Long title, but that’s just what I was looking for. In it, there’s a checklist of things that could possibly be causing some of the old tendencies. Phenol overload caught my eye.
Phenols, salicylates and additives are a problem that typically needs to be addressed after the Gluten Free / Casein Free (GCFC) diet has been started. Generally it is recommended to address foods high in phenols or salicylates, and additives about 2-6 months after you start a GFCF or other similar diet.
Phenols are a unique properties that can be high or low in foods. The higher level of phenols found in food seems affect children on the autistic spectrum or individuals with sensitive guts or immune systems. In addition, salicylates and additives can also have a negative affect and in many cases these need to be avoided all together.
It is important to note that almost all foods have phenols, just some have more phenols than others, and a child with PST has trouble processing them, so you want to reduce the HIGHLY phenolic foods so the child’s body does not get overloaded in trying to process the phenols it is getting anyway.
People who eat a large quantities of phenolic foods or foods containing salicylates or additives can experience some of these negative side affects:
- laughing at in appropriate time (at night or when something is not funny.)
- strange rashes that appear on the body
- erratic behaviors and moods
- self stimulatory behaviors
- night wakenings
- have a difficult time with their stools (with constipation, diarrhea or undigested foods.)
So, reading through the above list, Gav has every one of those issues right now (maybe not headaches, but I’m not sure since he doesn’t usually say what hurts-he just screams). That would also explain his seemingly obsessive desire for apples lately. I thought it was a good thing-what a healthy snack! Looks like he has a phenol addiction and is feeding his addiction with apples. He had 3 today.
Wow. I just can’t win. I think I’m on track and doing well with this whole diet thing and turns out, what he’s eating is STILL harming his body. I also began menu/grocery planning to begin the Specific Carb Diet in the next 2 weeks so hopefully we’ll see some positive results. To be completely honest, I’m deathly afraid of starting this for some reason. I know we’ve already eliminated a lot of the problem foods already, but for some reason I can’t seem to put one foot in front of the other to make this happen. I keep giving myself a time frame for a start date and it keeps getting pushed back. I’m sure it’s not as hard as it seems, the GF/CF wasn’t that bad. I just can’t wrap my head around changing everything AGAIN.
October 27, 2008
This is officially Day 3 in our new house. We almost have a working kitchen and were able to move the last of our belongings out of my parents’ house this weekend. We spent the ENTIRE day Saturday hanging out and getting the boys acclimated. All was fine, but I was very nervous about bedtime. Gav loves staying at Grandma’s so I was worried that come bedtime, he’d be putting on his shoes ready to head back to her house. I prepped him all evening for sleeping at the new house and when bedtime rolled around, he was grinning like the Cheshire Cat! I have never seen him so giddy to go to bed. I think the biggest thing for him was that Liam was going to be sleeping in there with him. (If you’ve read earlier posts, in the past we’ve had major sleep issues with Gav so we were hoping that by having the boys share a room, this would solve some of that). Gav got out of bed his usual number of times (to test us) but then happily stayed in bed and talked to Liam. There were both being silly and laughing. What a wonderful sound! Last night was even better. He did not attempt to get out of bed at all, but laid happily in bed until he fell asleep. Maybe we’ve found the answer. Thanks, Liam!
Gav has been extremely happy to be here and the transition for him went smoother than I imagined. His new thing these past few days has been giving tours. He’ll stand in the hallway and describe the house (all to himself, of course. If he catches me listening, he clams up). Here’s what we usually hear from the hallway. “This is the hallway”. “Behind these walls……” “This will be the kitchen”. “This will be the laundry room”. (Both of those rooms have yet to be completed, so he’s right on!). And the best one yet, “these walls are made of blue.” Think I’ve been talking about paint colors much? 🙂 So if you’re ever in the neighborhood, stop by! Tours daily!
October 10, 2008
Yesterday, I finally got around to calling a behavior counselor I’ve been hearing about. She works strictly with autistic and asperger syndrome kids. I’ve heard nothing but good things about her and we have an appointment for November 10th! The even better news is that our insurance will completely cover each appointment and there is no limit to the number of visits! It’s awesome how God works. Just as we’ve been having some discipline/behavior issues with Gav, this woman has come highly recommended, but I was told she has an extremely long waiting list. I’d say a month wait isn’t too bad!