First day in the new classroom....

Went well. He was a little distressed when we left, but no tears. His teacher said that he needed a lot of guidance to follow the routine, but overall did well. By recess, which is when we pick him up, he was making himself at home on the swingset. So that went well.

I was home from work today, nursing a cold, and got to visit some with our REA and her supervisor who were over for this mornings therapy. They both said that they noticed some good improvements in independent speech as compared to before spring break. So... perhaps my antiviral/skullcap combo is doing what we hoped.

Oh, and we got another baby cockatiel. he's only 6wks old. very mellow. He'll handtrain very easily.

my current crazy theory.

Here's the timeline ....

May 2007 - Dominic got first and only MMR vaccine.
Jan 2008 - Dominic weaned.
Feb 2008 - nasty virus knocks us all down. I( medicated Dominic's fever with tylenol (*which happens to disrupt the body's production of glutathione, a necessary antioxident) and motrin, and kept it around 100...
March 2008 - we begin to see regression in Dominic.

So... fast forwarding.

The only virus we had interesting results on was Measles. His IgG titer was 95. Anything over 20 is immune. Explain to me how one in a series of 5 vaccines can give that high immunity.

DAN doc says lots of kids with these symptoms have high immunity to measles, but refuses to give me an antiviral because an IgG response shows immunity, an IgM response, which he didn't have, would show current infection.

Neurologist agree's with me that there's a virus in his language cortex which has caused the regression and the following system imbalances (mostly GI)

About 2 weeks ago I added to our regime Coconut Milk (apparently the lauric acid in coconut milk "unravels" virus's) and Olive Leaf Extract (a good, all round antiviral)

A week ago, out of nowhere, Dominic got a large red rash on his forearm. Well, large meaning about 1.5in in diameter. Very red. Raised, and bumpy. It looked kind of like my eczema but is not responding to any of the eczema remedies I've tried for it. It is, however, starting to go back to skin tone color from the middle working its way out. (the only pictures of measles i can find on the internet have them covering an entire body, and describe them as starting from the scalp and moving down, turning brownish as they get older - this one isolated patch, however, has the same raised bumpy look as the pictures)

Four days ago I added to the immune mix skullcap and goldenseal - skullcap for delivery to the nerve sheath, and goldenseal for strong antiviral action. Because he's allergic to garlic, i didn't add the garlic to the oral mix - i put more goldenseal, skullcap, olive leaf into a garlic oil base and have been spraying it on his feet - where all the nerves end and rubbing it in. The theory is that the nerve endings in the feet will provide the transport mechanism to get the antiviral into the nerves in the brain.

Yesterday, Dominic spiked a fever of 102.7. Remembering my conversations with Joan over at Health and Wisdom about fevers being the mechanism our body uses to eliminate bugs, and we should work the fever - i covered dominic in a pile of blankets and gave him ginger tea and water. by bedtime, the fever was down to 100.5, covered him with more blankets - when i got him up to use the bathroom at 10:30, fever was back up to 102.5. It broke sometime during the night,and today its running 98.4 and he's got a pile of energy.

So. here's my crazy theory - and it is crazy. fair warning.

The measles component of the MMR tried to take root in Dominic's system, but because he was still nursing, and getting my immunities, it was unable to fully take hold until he weaned. Then the stress of starting school a few weeks later hampered his immune system even more. Then the virus he had with the fever and cough and runny nose that DIDNT test positive for the flu... was the measles upper respiratory component. For whatever reason, maybe because it was a vaccine version and not a full wild version, the measles rash didn't show up. BUT, the visit to the doc's that day exposed Dominic to flu, which he promptly caught and we all got sick.
Fastforward to last week.
The coconut oil / olive leaf combo "unraveled" the virus enough for it to erupt in the rash on his arm.
The goldenseal/skullcap combo unlocked enough of the virus for his body to mount a fever response.

What does this mean. Really I have no idea. Its just a theory. We'll see how it plays out.

a few random updates...

- The Resource Exchange got our application, and the committee met today and approved Dominic for services. What that means, i'm really not 100% sure, but i know it gets us a family support person, and i know its the first step to getting Dominic additional funding (or rather on the list to qualify for additional funding through the Medicaid waiver). So thats good news.

- We're having a snowstorm. All the weather channels have been swearing we'll be having a blizzard starting at 3pm today, which amuses me vastly. We'll see if they're at all right.

- forgot to mention last night that Rod got Dominic some new swim trunks - his old ones were too small. The new ones have the characters from the disney movie CARS on them and he liked them so much that everytime he climbed out of the pool he had to look down at his shorts.

he swam halfway across the pool. UNASSISTESD

i kid you not, something has clicked in his head and he managed to go halfway across the pool By HIMSELF after being thrown in then water by me... so not only did he make it to surface, but he was able to move to the wall from the middle of the pool. its not precisely swimming... i'd say if there was a doggie paddle on your back, this was close to it with a good chunk of treading water thrown in... blew my mind.

swimming sunday

We had a decent weekend...

We went swimming again on Sunday, and I decided to see what would happen if I let him go under the water by himself, since he was having such fun going under water with me. So i tossed him a little bit and let him go under on his own - and he popped right up to get a breath, treaded water, and got himself onto his back. I am SO thrilled by this. I did it a few more times, and actually had him getting from a few feet away from the wall, all the way back to the wall on his own. this is so cool - exactly what I'd hoped to do - get him to the point that he doesn't panic, he gets himself back to the surface, and then to a wall or person or noodle. We will keep

We have actually found now 2 restaurants we can go out to eat at as a family, which is nice because we haven't gone out to eat together since January. They are Mimi's and Rock Bottom Brewery.

~~~~~~~~~

updated because i forgot to add - dominic for the first time EVER took himself to the bathroom this morning BEFORE coming into our room. Generally he wants an audience first thing in the morning.

AND - while he won't go get dressed when i say go get dressed, we are now to the point that he puts everything on by himself (with some verbal cues, not as many as before), and we've just expanded to having him get out what he wants to wear from the dresser. again, w/verbal cues. but hey, its a step forward.
The weekend was gorgeous and Dominic spent a LOT of time playing outside, which was good.

this week is officially spring break, so no school or D11 stuff.

We start at Alpine June 1

Now fingers crossed that we can get the insurance to pay the out of network coverage on the fee;s. If so, we're going to be able to do it as long as he needs. If not, we're still capped at 3 months, unles money falls out of the sky.

Friday Funny, more swimming and the battle of insurance

So Friday night, we had arranged a babysitter as Rod had a certification to go to and I had class. the babysitter cancelled adn we ended up taking Dominic to gramma's house. He's never been there without us in the evening before. So i fed him at home, gave him his bath, put on his pj's and handed him his jacket, which he took off. I put him in the car. He was MAD. Routine does not include a car trip after bath you see.... so he fell asleep on the way over there, and was so upset to find himelf at gramma's in his pajamas that he took them off. Entirely. So i left as he was running around butt naked screaming mad and she was trying to put his clothes back on. He was just upset at the change of routing. If we'd left the bath for after he came home, it would've been fine.

He's doing AWESOME swimming. I took him friday morning and then again this evening - on Friday we were by ourselves and i had him floating on his back, completely unassisted for counts of 10-15. He can totally do it, but he tends to panic if he thinks he's doing it alone. Tonight Karen was there, and he was super clingy, but by the end of our time, we had him floating with a pool noodle under his back, and he wasn't clinging to it, or death gripping, but literally just floppedn over it. WAy cool.

So i've got an HR rep within my company whose sole existence is to work with the insurance compnay and help employees with whats going on. I've been working with her for several months now. Here's the thing - my insurance company does not cover anything related to a diagnosis of Autism (good thing I made the neurologist give us a diagnosis of Aphasia...), and they don't formally pay for ABA therapy. BUT, the billing codes that Alphine Autism Center uses for Tricare are in our ins's system and they DO NOT send a flag out for clarifation or denial. Which is fascinating. So I've got her going back to her contact at the insurance and having him dig deeper to find out if it would flag their system to get a bill for 60 hours of these codes in a month. So it appears that there is a very slight chance that we could bill them with a diagnostic code of aphasia, and use these billing codes and they would pay out of network. Which is 70%. That would make this MUCH more affordable for us. The only issue would be if the fact that the bill would say Alpine Autism Center on it flagged them. No idea on this one...

Even if insurance won't help, we've got money put aside for 3 months of Alpine, at half days, and we're going to start that the last week of May. I've talked with them and they're willing to let us commit to just 3 months because they've got a child who is leaving. I'm hoping that the dates match up, that would be ideal.

The other iron in the fire I have going is that I've formally asked my HR department to change the coverage of an autism diagnosis - they didn't cover it at all in 2008, and in 2009 cover to age 3 (which is STUPID as most doc's won't diagnose prior to age 3),and they're going to revisit the whole topic for 2010. Doesn't hurt that i provided documentation showing that all the states in the country either mandate coverage or have legislation in the works to mandate it. Even tho as a self funded insurance policy thye don't HAVE to go along w/state mandates, they would if it were federal. And they still may. They just probably havne't had anyone complain before - most people would just see it wasn't covered and go away.

Weighted Vest - FAIL

So, one of the tools in the IEP that was suggested the teachers try was to have Dominic wear a weighted vest while playing outside and eventually move to using it inside, too.

So i pick him up today and his teacher said to me... Wow, i've never heard him scream like that. We put the vest on him and he got so mad, he SCREAMED and SCREAMED and actually said "take it".

Yeah. He's got my stubborn streak.

Quick updates because I've fallen behind

- We saw Dr Hatfield on Tues. He can't do ABA for Dominic because insurance won't pay for it. There's a law in the works in the state of CO to mandate insurance coverage, however my lovely HR rep has advised me that It would not apply to our policy because our policy is self funded by VzB and doesn't have to follow state mandates (so i need to raise a ruckus in our HR dept apparently). Dr Hatfield was much more pleasant than I had anticipated. We will see him again ... in May I believe.

- We made the very difficult decision to go ahead and move Dominic to a different preschool after spring break (so his first day there will be March 30). The biggest reason we made this choice was Allison's comment that if we did not take what the district said was their best placement for quickest implementation of the tools they gave him in the IEP, that should we go back to them and complain it wasn't working, they could say that we didn't give it a fair shot. Dominic's current teacher is on board with this, I talked with her this afternoon.

- Supplement services start tomorrow morning with Dominic's assigned one on one REA person coming over to our house. That should be interesting. Then next week, she'll be over 4 days, thena week off for spring break, then she's over 4 days AND he goes to the Friday autism classroom.

- We met Miss Karen again for more swimming this afternoon and he did SO good. When I picked him up from school, I told him we were going Swimming, and he got so excited he kept pulling me to try to get me to take him home. And saying SWIMMY. (his teacher was QUITE impressed that he said swimmy). I asked him if he wanted to go swimming or home and rest,and he answered SWIMMY. Then we had about an hour before we had to leave, and he would not take his coat off at home. he wanted to go RIGHT that second. The first part of the lesson, it looked like it was going to be battle, but about 10 minutes into it, he actually RELAXED and floated beautifully on his back. Up to today the longest we'd gotten him on his back was 5 seconds. Today, it clicked in his head, and he let us float him all the way across the pool. seriously, we had a finger under him holding him up - really jsut so he knew it was there. He is becoming very proficient in rolling from his tummy to his back, and we've about got him conditioned to immediately roll onto his back upon entering water. The whole goal with that is safety. So I'm off work Friday for Rod to do a certification, and i'll be taking him back in the morning before school.

Phone call and paperwork Tuesday.

Today I called

- My HR rep who deals with our insurance company. I’ve asked her to go back to the insurance and specifically find out if they would cover ABA therapy with an Aphasia diagnosis. She has agreed to do this without using our name as she’s got other employees who are trying to get ABA covered as well. Its worth a shot.

- The Neurologists office to specifically ask for a letter from him saying that the aphasia diagnosis is due to a viral brain injury NOT a developmental delay


- The DAN’s office to get diagnostic codes for all the out of pocket tests we had done, which I’m going to submit to the insurance in an effort to get some money back on them.

- Alpine, to get the billing and diagnostic codes that they use when they bill Tricare or Medicaid for their services. (For the HR rep to go back to the insurance with)


I then Filled out:

- The application to The Resource Exchange, to attempt to get more funding.
- The insurance claim form to submit all these bills for hopeful repayment.


We also found out that the supplemental services Dominic is going to get will start this Thursday with a 1 hour appt, and then will be 4 days a week plus the Friday. We’ll do 4 days next week, then a week off for spring break, then the 4 days plus Friday class.

Supplemental services and SWIMMING,. oh my

this afternoon we met with the coordinator for the supplemental program, which is exciting. They are trained in floortime and RDI as well as some ABA and some verbal integration stuff - so a real assortment of the current treatments for Autism. What will happen is Dominic will be assiged a REA (and i didn't get what that stood for) who will come to our house 3x a week for an hour each (we're going to probably do Tues, Wed, and Thurs at 10:15am) to work intensely with him one on one. Then on Friday mornings, he'll go from 8:30-10:45 to the special classroom where he will work with his REA and several others. Then the supervisors of the program are also around on Fridays and come sporatically to home visits. We are glad to be starting this soon - the home visits may start as early as Thursday this week, or no later than Tuesday next week. ANd then the Friday thing will start right after spring break, so April 3.

~~~~

So on Saturday at lunch time, I took Dominic swimming at Villa Sport. This is one of the things we're doing to try to help him increase his core strength, plus he loves the water. While we were there, i worked with him one on one for 20ish minutes, and then put the floatie on him and let him frolic. I observed a woman clearly teaching another little boy about Dominic;s age to swim, and when she finished, I initiated a conversation withn her. Turns out she has been teaching kids to swim for years, and has worked with special needs kids many times. She went over and worked with Dominic for a few minutes, and he did so well we made arrangements to meet this evening. In a 30 minute lesson, for which she would only allow me to tip her since it was unofficial, he was doing SO well. Very impressed with it. We're going to meet her again on Wednesday and keep this going. I'm hopeful that he'll be able to swim on his own by summer.

Oh the dilemma.

I got more information about ESY – extended school year – services today from the woman who ran the IEP on Friday morning.

ESY by definition is designed to help the student maintain their current level of progress, NOT to help them progress further. It is done as a tutorial service that is brought to the child, and is implemented by certified teachers. Her proposal was that we reconvene the folks from the IEP session late April to evaluate how Dominic has done with all the changes we make, including the supplemental services and decide at that point how much ESY he needs. She couldn’t give me a typical range because its all child specific, but she said on a minimum she has some kids that get 30minutes 3x a week. She is pretty sure he’ll qualify for more than that.

Then the kicker. We had a deeper discussion on why she believes that Dominic’s needs would be better met in a classroom other than Longfellow at present. Her point was that on the whole the teachers in the D11 staffed classrooms have a higher level of education than the teachers in CPCD staffed classrooms, but more specifically, they deal more frequently with autistic kids and are therefore able to implement the changes his IEP requests more quickly and efficiently. I countered with the fact that we’ve experienced putting him in a classroom in mid term and it didn’t go well. And that he’s happy AND the kids (and staff) know his quirks right where he is. She countered with the fact that one of the classrooms that has an opening has a teacher who ran the D11 autism preschool supplemental program for 3 years and that his current teacher is fabulous but in 10 years has only had one other autistic child that she worked with her on. She added that her teachers are used to kids coming in right after age 3 – that the program at Buena Vista was a pay preschool, not a preschool dictated by the special ed laws.

Rod and I will discuss it.

IEP update

The IEP was a little weird. We’re not done yet, it ran way over and we had to leave before all of it was hammered out. We agreed to discuss the rest via phone.

Here’s what we do know.

We’ve increased his ST from 45min a week to a minimum of 90min per week.

We’ve added a “motor therapist” at 30min every other week for OT concerns.

We qualify for supplementary program which consists of an assigned professional who is trained in working w/autistic kids (tho they were very vague on the specific training) who would work with Dominic 3hrs a week in our home (in 1hr chunks) and for a 2 ½ hr window on Friday mornings at school in a special classroom. This is only offered during the school year, but could start as early as next week.

We qualify for extended school year, but we ran out of time before we could discuss what that meant.

They have suggested that since we already know our local elementary is being closed at the end of this year, that we go ahead and switch him to a different school now. We don’t want to. He’s happy where he is, we LOVE his teacher, and we’ve already experienced once putting him into a new classroom in the middle of the year – and it didn’t go well.

They didn’t argue about his diagnosis being on the IEP. They did say that they felt he didn’t need a functional behavior assessment because his behavior issues are clearly to them the result of lack of communication ability. I reserved the right to revisit the topic.

We rewrote a number of his goals. The lady who does the supplemental autism stuff was very helping in backing me to when I made sure that they stated he needed to achieve his goals INDEPENDENTLY (one of the tips we picked up yesterday from the folks over at Alpine Autism Center), so that was nice.

He did real well for 3 hours of this. We did send him outside to swing for a little while with one of the ladies, who is a preschool teacher and will probably be his teacher next year at the new elementary. She’s very nice, and interacted well with him.

So, we’ll see. We obviously need a lot more information about the summer program.

I do feel, tho, that his needs were paid attention to. I also feel like they were paying a lot more attention to us as parents. They were deferring to us to do final approvals on things, and it helped SO much to have his current teacher, speech therapist and early childhood special educator there validating what we were saying. I feel like they get that there’s been another regression, and we are being paid attention to.

We have an appointment on Monday afternoon where the lady implementing the supplemental services AND the coordinator of the whole IEP are coming over and they’ll bring us up to speed on the Summer stuff and the supplemental stuff. So we’ll know more then.

Alpine Autism Center, IEP Tomorrow, and Hatfield

This morning we went over to the Alpine Autism Center to see who they are, what they do, and get their advice for our IEP meeting tomorrow.

It’s a beautiful building, located on the grounds of the St. Francis Monastary in Northwest Colorado Springs. Its about 35 minutes from home, but I think I could get there in 15 minutes from Work. We walked in, there’re 3 treatment rooms and some offices. They have 12 kids in the program – some are half day and some are full. Each kid has a full time therapist who does everything with them. And then there are additional people running around doing things too.

Really neat place. The therapy used is the CARD curriculum. Each child’s program is written specifically for them. They extensively document - to the point of graphing - progress on all goals. Each child has a binder full of treatment notes. We spent about an hour talking with the program director, A, and head teacher, S. Dominic interacted really well with both of them. By the end he was hugging them and asking them to pick him up. We were really impressed with them, their interactions with him, and what they do. The downside – its exhorbitantly expensive – the half day program is $2300/mo. Seeing it, we understood why – there’s ~2.3 adults per child. Plus 1 secretary, and a director. The half day program is 3 hours of therapy, one on one ABA, educational therapy teaching the skills they need to communicate and socialize.

We did ask them if we had a finite amount of money, would it be better to do 6 weeks of full day or 3 months of half day. (we could probably stretch it to 4 before we had to start asking for help), and they said it would be better to half days for longer. We asked when we would start to see measurable improvements, and they said within a matter of a few weeks. They work on each kids individual issues, so the biggie we’d be working on with Dominic would be the verbal skills. They both said that their impression of Dominic after sitting with us for an hour or so was that he would benefit from their program. They try to get a child placed within 30 days of application, but sometimes have to hire additional therapists for that child.

For the IEP tomorrow, the pointers they gave us were interesting – for example, if an IEP goal is for Dominic to be able to do something with prompts or verbal cues, we need to change it so that he does it independently. We definitely need to make sure that they change his category from preschooler with disability to preschooler with Autism. I have now, thanks to them copies of the 2001 National Research Committee study on Educating Children with Autism, and the 2007 American Association of Pediatrics report on Autism, and both of those studies say that 25 hours of face to face educational intervention is required 12 months out of the year.

That is the “Cadillac” and we have been warned that the school district will argue that they don’t have to provide that level. But I’ll still be taking the documentation in with me and quoting it. We’re going to be asking for the ESY – extended school year – and one of our big questions will be about what exactly that means – where is the program located, how many students are involved, what are the credentials of the teachers, what are the hours, etc.

So all of that said, we will still be going to interview Dr Hatfield on Tuesday. He does NOT have a good reputation among parents. And the insurance will not pay for ABA – they consider it an educational intervention, and therefore not the responsibility of health insurance (Side Rant, if we were indigent and on Medicaid, Medicaid would pay for this – to the tune of 35K per year. Or if we were in the Military, Tricare would pay for. The govt. knows its effective. We so need Universal Health care- Oh, and the Medicaid waiver we’re going to apply for has a 3-5 year wait list. ). But we’re still going to meet with him. Apparently he’s of the school of thought that diet and vitamins (what we’re doing right now) are completely a waste of time and money and entirely ineffective (we already know that’s not true, but its good to know how he feels going in). So, we’ll see. I doubt we’ll use him, because frankly an hour a week of a child psychologists time is going to be just as useless as an hour a week of speech therapy.

We have decided to go ahead and cancel the place up in Littleton simply because the drive is prohibitive. One way or another, we’ll do our best to get Dominic AT LEAST 3-4 months of half days at the Alpine center probably starting right when school ends. Maybe more. He’s 4 – we simply cannot afford to wait any longer as none of the therapies thus far have shown improvements in his language skills. If we can show significant improvements in minimal time from the Alpine style of intervention, we may be able to get D11 to pay for some of it (apparently that’s been done before). If we get amazing results, then we may ask for help from people we know and/or see if we can get some grants. The Alpine center is a non profit.

Oh, and while the IEP tomorrow morning is important, its not going to be earth shattering. If we don’t like whats in it, we file for mediation, if that doesn’t work, we do a due process hearing. We don’t have to agree with the school, and what we get on paper tomorrow can be changed pretty quickly if we need.

today was better

I think I needed a mini breakdown tho.

Today was a bit better - he did a lot of talking for his speech therapist. So much more she commented on it to Rod. Then turned around and didn't say anything to his teacher. Go figure.

There are up days and down days. Today was a down day.

You just don’t realize how different your kid is until you try to have him do something new, very fun, but that is integrated with other kids.

Today we tried a preschool tumbling / trampoline class at Art Sports. It was rough. It was 15min of playful warm up exercises, for which he did none, and spent the time running away or being corralled on my lap,. The second 15 minutes was an assisted tumbling run. I had to help him do EVERY single move. Either he was being extremely uncooperative, or he’s lost a ton of muscle tone – he was downright floppy. Then there was 15 minutes on the trampoline – which consisted of me physically keeping him from disrupting other kids, and staying on his trampoline. Then another 15 minutes on another tumbling run. I wore my heart moniter, and burned 480 calories in an hour. For reference, that’s right around what I burned in 45 minutes of running on the elliptical trainer yesterday. The “coach” for the class encouraged us to try a different trainer since it was so rough on me to basically lift him thru all the moves, and on him to be so corralled when all he really wanted to do was run and jump.

I’m tired.

I *know* that this is a result of a viral brain injury from a year ago, but getting the doc’s to nail down what virus and how to treat the resulting damage is proving to be problematic.

Knowing that the therapy that will help him the most is financially out of reach doesn’t sit to well with me either. At best we could get him 6-8 weeks of something he needs YEARS of. Or I could borrow from my 401K, but then I’d have to pay it back out of a paycheck withdrawal, but my paycheck is almost 100% budgeted for, so that’s out… Its just really frustrating.

Supplements are wicked expensive. A money post.

They all run out in different amounts of time, too.

That said, the supplements that Dominic now takes on a regular basis average out to a cost of $230 per month.

And we probably will still get one or two more after the last 2 tests come in. I'm expecting an antiviral to be part of the package. We'll see....

And March is the month of trying to find a place to do behavioral therapy (ABA or SCERTS or CARD - checking all three of them) and figuring out how much, if any at all, we will be able to afford. Right now, we're sort of hoping to be able to do at least some of the behavioral stuff this summer. it is certainly not something we could afford long term in any situation. I have the paperwork for application to the Resource Center, which is the first step in applying for the Medicaid CES waiver. Even if we qualified for that, its doubtful we would see funding for several years from what i understand. Also from what I understand, its tremendously urgent to begin whatever therapy we end up with as soon as possible. So, hello rock, how are you hard place.