Our visit to The Marcus Autism Center and other updates

On tuesday we had our first appointment at The Marcus Autism Center in Atlanta.
It was a fairly brief appointment, being the initial evaluation, to see if Liam qualifies for further services, which he does.

The next appointment will be an almost all day event, and will be the official eval and diagnosis. 

I am pushing for an official diagnosis (which seems to be happening at a snails pace, due to insurance loops and hurdles), so that i can then apply for the Katie Beckett waiver/Deeming waiver. With the waiver we will be able to provide Liam with everything he needs, therapies, etc...

The only downfall is that the waiting list for our next appt at Marcus is eternal. Our next appointment isn't until March. :/

We will have to make due until then.

Hopefully when Jasons insurance changes in January we can get some additional therapies going for him then.

They put us on a few other waiting lists- one to get him in to the the Language and Learning workshop which i have heard wonderful things about, and the other for the Feeding therapy workshop, so we can work on some of his oral sensitivities and issues (chewing, putting inappropriate things in his mouth like pens, rocks..etc...) and hopefully get him eating some more and some new foods.

Also, they provided us with some toilet training instruction and ideas that might be able to help us here at home with potty training.

Lastly, but just as important- they provided us with Instructions and Follow up/Patient Instructions.

In it they have recommended that Liam attend a preschool program 5 days a week, stating that he would benefit most from a Daily Program, that he needs the Cognitive Stimulation and the Daily Social Interaction.

Also noted is Liam's Fine Motor delay as well as Speech delay.  

But, since he is already receiving speech they recommended we also obtain the OT to help with his fine motor delays.

He is currently attending only 2 days a week. I have felt for a while, that this was nto enough, and had previously requested going to a 3 day, to no avail.

So i went with this information to his teacher, in the hopes that we would be able to make the appropriate changes to his schedule and add the OT, which i have been asking for since the beginning. 

The answer- Basically, no to all of the above. She doesn't think he is "ready" more days. I was even willing to comprimise and start slow, going to just 3 days. One more day.
No to that as well. A big fat no no and no all the way around.
At the end of the conversation she basically said we could "revisit" the topic again come the new year and discuss MAYBE going to 3 days a week.

I let her know that i dont agree, that i think he definitley would benefit from even just the ONE extra day. I mean, evreything i read and see about kids like Liam say that 5 days a week is best. I should have asked for it from the get, but i didnt know any better at the time. Live and learn.
We are even willing to wait until the new year to add more days being that it is really just a few months away and i am trying NOT to to be a total bitch about it. Iget that we are coming in to the holiday seasona nd she may have a schedule or plan already set for all the kids in her classes and what have you. Fine.
When January rolls in, we will not accept no for an answer and will not WAIT anymore either.
Needless to say, i disagree with his teacher, Jason disagrees and most of the people i have spoken to who are knowledgeable in the matter also disagree. 

This entire process can be so incredibly frustrating. It seems at every turn i am met with resistance, someone pushing back, someone putting up another wall for me to have to pound down, someone making us wait. 

I am so sick of it . 

You know, this whole situation is challenging all by itself. You would think that others would try to make it just A LITTLE bit easier for the parents who are only trying to do the best thing for their kid. 

Thats all i want, is just to give Liam the things he needs. Now . Not tomorrow. Now. He needs it now. This is such an important time in his development and last thing we need are more obstacles in our way of progress. 

#(&^*&^$(!^$(!!!!!!!!!!!!!
Ya know?!?!?!

More than likely unless something drastic changes between now and January, we are going to have be assholes and go above his teacher to get what we want and need, and then the dynamic between her and i will change and i hate confrontation and all this could just be so easily resolved. 

And and and.

I have started to look in to private schools. There is a school in fayeteville called The Joseph Sams School and it looks absolutlely wonderful. 

I am not sure if we will be able to afford it, but they do provide scholorships so i have begun looking in to that as a possible option.

So, I am trying my very hardest to be patient, reminding myself this is a marathon and not a sprint, and that ulimatley all i can do is try my hardest and the rest is in Gods hands.

All we can do is continue to soar...and we do :)

Nordic Naturals Arctic D Cod Liver Oil

Along with Kirkman Labs Super nu Thera, we will be adding Nordic Naturals Arctic D Cod Liver Oil in Lemon flavor- to Liams Suppliment protocol. We will begin with a full dose, which for him is 1/2 a teaspoon.
We are almost through with the Super Nu Thera/Rasberry liquid (i have been ordering the trial sizes which works just fine for now until we lock down a protocol, also since he takes less the the adult dosage it lasts....) but will be switching to Super Nu Thera without A and D cherry/liquid, because he will be getting his A and D from the Nordic Naturals.

I am going to begin this afternoon by adding it to his oj, and then again tomorrow, this time i will mix it in his oj along with his usual KL SNT dose as well.
We've had such positive results from the start of our supplementation process with Liam!
Bottoms up!

And so we continue.....

Smiley face stickers

Yesterday was Liam's best day at school to date.
During our normal school day routine, he would usually always fight me on going outside tot meet the bus, even if the rest of the day went fine.
Yesterday, when i said- ok bubba, time to go outside to meet the bus!- he ran to the door, and tried to open it. Not just that but he walked all the way down to the end of the driveway on his own (i would usually have to drag/carry him Lol).
He was all smiles the entire time and was playing and running around while we waited. When the bus started coming down the road i pointed to it and showed him- Look! There the bus, you're going to go to school today and see Miss Jill, and draw, and play and your going to have SO MUCH FUN.
He held on to me for a brief moment and i thought i would still have to carry him on the bus and help get him situated in his seat.
But, NOPE. Big boy Liam, went up the bus steps all by himself, and walked with his sweet little old bus aide lady to his seat.
Just like that.
When he got home the bus driver said he didn't cry or fuss not one single time, NOT EVEN IN CLASS. NOT ONCE NOT THE ENTIRE TIME.
holymolyspicyguacamoly.
The end. lol jk...

In his communication folder was his daily report card, and next to every "daily goal" he was given a smiley face sticker.And, yes, he has received one before with all smileys  The big difference this time is, he was genuinely happy the entire day, which to me is better than all the smiley face stickers in the world.
Good job my love, you have been trying sooo hard and we are SOSOSO proud of you!
Onward and upward!

I know that a lot of it is just Liam adjusting, but i really have to mention Kirkman Labs Super New Thera again , because i feel it has contributed SO positively to some of Liam s behaviors. The biggest one being no more bedtime battles since he began taking the full dosage . Not one time has he fought us and struggled with to bed since. Not once.
And now, i am noticing a calmer, more even tempered Liam, on anything and everything school related.

Call me a believer, because I am.

Love and light, 

A

TACA Parent Mentor Program- emails and information

I wanted to share the following email with you,
1.- because it contains a ton of helpful information and i want to also be able to share it with anyone who just may happen to come across this blog that needs it.
2. It is part of our journey and i want to keep a record of it on here.
3.- i want to share with you, my family and friends who may happen to read this as well, because i think its important.

This sort of in depth conversation is not typical in passing, not just your everyday -hey how are you today phone calls and regular interactions so its an easy way for me to let you in on  just a small part of what is going on in our everyday life when it comes to this particular journey.

I think its important for not only the parents of children with autism to educate themselves, but also for those closest to the family and child to educate themselves on the topic as well.

There is so much information involved that it is simply impossible for me to go into all of it with you, unless you want to schedule some sort of weekly educational phone call , which i know i don't have the time for and you probably don't either. :)

Also- its a subject i obviously spend a bunch of time on, so sometimes i truly just don't want to talk about it allllll the time. I recognize that we have a life beyond this topic, and its a wonderful one!

I will be adding onto this chain of emails as she and i continue to chat.


And so we continue!

alex <amp.atl@gmail.com>	Wed, Oct 10, 2012 at 9:10 PM
To: "karrifox@gmail.com" <karrifox@gmail.com>
Hi there, I am new to this process and wasn't sure if I am supposed to be the first to reach out, or how this works... First i just wanted to say thanks for making yourself available to people like me, new to this journey and looking for a little guidance and some insight :) Can i also just say, thank God for TACA. That website has become my bible on autism information. My name is Alex, and I am married, 33 and currently living in Newnan Ga. Jason and I have been married about 13 years and lived in metro Atlanta for most of that time. We now have 3 kids. Liam who is 3 and Daisy and Sam who are 10 month old twins. We began noticing little things about liam very early on in his infancy. There was no "regression" after a period of time. He just never developed certain things at all, such as speech. He is still currently non verbal. He also doesn't gesture, like point to things or wave. We are in the process if having him diagnosed, our first appointment at the Marcus autism center is in the 30th of this month. Regardless,  we decided a while back not to wait got a diagnosis to start interventions.He is currently gfcfsf (since august) and i started him on super nu thera about a week ago. I am beginning to research info on yeast overgrowth and also other supplements. Should i hold off on any further vaccinations for him? I am delaying any further vaccinations for the twins until they at least 18 month sold. So far no "symptoms" with them. Any thoughts on this? Any words of wisdom, advice on anything? :) I know, that's pretty broad. lol I feel like i am drowning in a sea of information sometimes. I dont know any other families personally with children that have special needs and although i know i have my husbands support and my families support sometimes i wish i had someone out here that knew exactly what i am going through. What i mean when i say things like stimming , sensory seeker or gfcf. Why i feel like an emotional roller coaster at times. The term warrior mothers is dead on. that's what it feels like, i am in a battle against this thing called autism. Hope to hear back, thanks again, Alex ________________ Karri Fox <karrifox@gmail.com> Thu, Oct 11, 2012 at 8:29 AM To: alex <amp.atl@gmail.com> Hey, Alex. Wow. First I want to say that I am so sorry for your pain. And I relate so much to your story. I am 34, have been married14 years and have two sons. Taven is 6 and was diagnosed with autism at 2 years, 9 months. Royce is 5 and is neurotypical. Taven also had no concrete regression. Some skills just never came, or they came much slower than for other children. For example, he said his first word at 17 months, but after that there was no "explosion" of words like with most toddlers. Each word seemed to come so slowly and deliberately. And he had what seemed to be strange words or signs (I did baby sign with him). He would sign "airplane" but never "mommy." Taven didn't start calling me mommy until he was 4 years old. Taven was diagnosed by a developmental pediatrician in Smyrna, Dr. Nathanson-Lippitt. She is a DAN doctor--which I had no idea of at the time. She started us on our journey of biomed and therapy. Right now, Taven is in first grade at a typical private school with a full-time one-on-one ABA therapist. She assists him throughout his day. He does music therapy, speech, OT and karate. We have chelated; battled yeast, bad bacteria and parasites; used vitamin supplements to address nutritional deficiencies; tried HBOT treatments, etc. I vividly remember my first e-mail to my TACA mentor. She replied and told me I was on a "marathan, not a sprint." She said not to burn myself out. Boy, I hated hearing that. I desperately just wanted to recover my child ASAP and forget this autism thing ever happened to us. However, she was right. My son is not recovered, but he has made SO much progress. When I look back at how far he's come, it's pretty amazing. I am thrilled that you are going to Marcus. I would encourage you to get put on any and every waiting list they have. (There's a waiting list for everything, and you can always say no later.) Taven spent 18 months in the Language and Learning Clinic, and it was so helpful. I loved it there. They improved his behaviors, his language, even helped me potty train--awesome! As for your question about vaccines, I completely stopped for both my children after the diagnosis.That's a very personal decision that only you can make, but I knew we were done with them. You can get an exemption letter for school purposes in the future if you decide not to vaccinate further. (Let me know if you want it, and I'll send you one to print out.) If you do want to vaccinate, you can check out Dr. Sears' Vaccine Book or Dr. David Berger's (Wholistic Peds in Tampa, FL) modified vaccine schedule (pretty sure it's on his Website if you Google him). Once you have an official diagnosis, I would encourage you to apply for the Katie Beckett/Deeming Waiver for medicaid. This is very valuable, because if you qualify, they will pay for things like speech, OT, dental sedation, etc. Also, we needed to have it in order to qualify for the Language and Learning Clinic at Marcus--which was 15 hours of free ABA per week. The Deeming Waiver grants Medicaid to your child based on his assets (not yours) and if you get it, you can apply for HIPP (which means the state would reimburse you for your insurance premiums each month so that you don't drop your son from your insurance). Here's a link with more info: http://p2pga.org/roadmap/insurance/insurancedeeming.htm Also, I would encourage you to look into therapists. Here's a list I usually give people of ABA therapists. Sorry that most of them are not in your area. I live in Woodstock and am not even sure what Newnan is close to. Some families opt for FloorTime instead of ABA as a behavioral therapy. My doctor told me three years ago that both are fine--just different. And you can read more about them on TACA's site, and maybe you already have. :-) ABA therapy--      Marcus Autism Center's Language and Learning Clinic--ask for Susan Shepherd to get on the waiting list (it's worth it)  404-785-9350 or try 404-785-9494 (think that's Ms. Lisa at the front desk. Ask her to connect you to Susan.)      Coby and Janet Lund at IBS  866.750.5554, Ext.1      Reinforcement Unlimited (never used them myself but they accept insurance if you have BlueCross or your insurance covers this type of therapy)  770-591-9552      Summit Learning Center--a school in Roswell that provides ABA therapy  (770) 552-1535      Kaleidoscope--a school in Roswell like Summit but maybe a bit less expensive 770.993.7008      Manuela Woodruff--private BCBA, 256-239-4485 Yes, it's a sea of information--a tidal wave really. There never seems to be enough money to do everything you want, and even if there was, you'd run out of time in the day. What I am learning is to research and then trust my instincts about what to do for my child. All our kiddos are so different, and you and your husband know Liam best. So for a to-do list suggestion (just a suggestion): 1. Get your diagnosis 2. Get on Marcus waiting lists 3. Research behavioral therapies/therapists and try to get something going 4. Apply for Katie Beckett Feel free to e-mail me or even call (770-355-7645). You're doing a good job. You really are. --Karri alex <amp.atl@gmail.com> Thu, Oct 11, 2012 at 11:36 PM To: Karri Fox <karrifox@gmail.com> Thank you for sharing some of your story with me. It really means a lot, and makes me feel like we aren't just floating out there alone. lol You know? Thanks also for the invaluable info. I am going to begin looking into all of it.  Part of our problem is our insurance. We have an  Aetna HMO which at the time we picked it none of this was going on. I didnt know anything about insurance until all of this started happening. Well, in a nutshell they wont cover jack.  The Babies cant wait program, while wonderful and helpful,  used up the little 3 months of speech therapy we had available to us and thats it. My plan was to obtain additional speech therapy for Liam (since they wont cover any other type of therapy right now) once he transitioned into the special needs preschool program (public school) from the babies cant wait program only to find out i would not be able to.  So until the new year i have myself and the school to fall back on on any additional therapies Liam needs (The school provides 1 hour of one on one speech therapy a week along with his classroom setting which applies ABA techniques). He goes twice a week from 1130 to 2.  Its not enough, and i know it.  I know its only a few months but it feels like an eternity, and it is really frustrating to not be able to give him the help he needs right now. So i am feeling that marathon reference for sure.   I had to pretty much badger our insurance company for months to help me find someone, anyone that could diagnose him that would be covered.  i finally just happened to get someone on the phone who mentioned to me that i could request an out of network referral from our regular pediatrician  I had no idea. My ped didn't even offer that info either knowing our situation and everything.  months for me to get someone to mention that to me. Frustrating to say the least.  That is how i got the out of network referral for the marcus center. Before that i was literally hitting wall after wall after wall.  Thankfully i learned a lot from his babies cant wait therapists while they were available to us.  Someone mentioned to me a doctor byt he name Jill Dickerson who works with kids with autism  and specializes from what i have heard in the gfcf diet. I think she may be a DAN but i am not sure. We have an appointment with her in November. And our insurance covers her! INCREDIBLE. lol I did look up your ped and surprise surprise our insurance doesn't cover her.  But i am keeping that name  in my "to do" file because obtaining a DAN doctor is one of my goals.  That said, we are upgrading our insurance come January, so hopefully that will allow a bit more freedom. It cannot happen fast enough let me tell ya!   Also, i am going to apply for that katie beckett waiver. Its my understanding that they do not go off income which is good for us because we are right in the middle. We make a little too much to qualify for many things and we are too broke to pay out of pocket for the therapies he needs.  Its very challenging to say the least. You know through it all, all i have to do is look down at Liam s smiling face (because he really is a just such a happy kid ) to remind me to appreciate what we have. And i do!  So, I apologize if i am coming off like a Debbie downer because that is not how i am at all! lol it just feels good to be able to discuss these things with someone who gets it.  What are your thoughts on private school vs. public?  Are there grants or things like the katie beckett waiver that would help pay for private? I really appreciate your time and guidance. It means the world!  Alex Karri Fox <karrifox@gmail.com> Fri, Oct 12, 2012 at 8:54 AM To: alex <amp.atl@gmail.com> Hey, Alex. You are not a Debbie Downer. This stuff is hard, and I know what often makes us feel alone is that other people aren't being authentic about how hard it is. So when others put on a happy face, I walk away thinking I must be the only one struggling or feeling overwhelmed and frustrated. Which is so not the case. Sorry about Aetna. They stink. We have Aetna Choice POS, and all they cover is OT--not even speech. The only thing you can do is see if your company's insurance plan is company funded or fully funded. Ask someone in HR. Company funded means self-insured, in which case your company decides what they want Aetna to cover. If it's not self-insured, then Aetna must abide by the laws for insurance in the state in which Aetna is based--Connecticut. And Connecticut does have an autism insurance law that requires Aetna to pay for certain therapies like speech and ABA. Unfortunately for us, my husband's company is self-insured. So it is just something to check into. Also, it really sounds like the Katie Beckett waiver will help you a lot. When the time comes, there are consultants you can hire to help you fill out the paperwork so you get approved sooner--if you want the contact info for someone just let me know. Also, at the TACA conference this past weekend, I met a pediatrician/geneticist based out of Alpharetta who is implementing DAN protocols and takes Medicaid and insurance--yay! Her name is Dr. Vidya Krishnamurthy and her number is 770-346-0132. She would be someone to help you get tests done and help with yeast, supplements, etc. I don't think she is able to diagnose though. I relate to being in the middle income level. We never qualify for grants or scholarships. That's why the Medicaid waiver has been such a blessing for us. Don't want to overwhelm you, but here are two more things. 1. Omega 3s--that's the first supplement our doc put Taven on and she said pretty much everyone on the planet needs more. She recommends NutraSeaD and Arctic D by Nordic Naturals. You can purchase them at Whole Foods or online at OurKidsASD.com. Taven started on 1/2 tsp per day at 3 years old. 2. There is a web site called Rethink Autism that you can subscribe to monthly (I think it's less than 100 per month) that will teach you and any family members how to work with your son using ABA. It will ask you questions to set up his program (you know, find out what skills he needs to work on first) and then show you actual videos of therapists teaching that skill so you and your husband, parents, etc. can learn to work with your son while you are waiting for some other programs. Please know that this is just information. You don't have to do it. And I really know what it's like to try and help your son when you have other babies who need you. (I only had one other baby and that was tough enough) Have a good weekend. --Karri

alex <amp.atl@gmail.com>	Sat, Oct 27, 2012 at 1:27 PM
To: Karri Fox <karrifox@gmail.com>
Hi there,  Since our last chat i have ordered and begun Liam on Nordic Naturals Artic d. He is taking this along with Super Nu thera w/o A and D. I also just ordered TMG w/folic acid from kirkman labs... Next up on the agenda will be some probiotics...do you know anything about 3 lac? what about culturelle for kids? I have an appt with a local doc that specializes in kids on the gfcf diet as well as supplements and other bio medical interventions. We see her on nov 4. I plan on talking to her about battling yeast, etc. I am afraid to go at that one alone without the knowledge of a doc.  Next tues is our first appt at the Marcus center.  What might we expect? Anything i should be prepared for?  I am only a little nervous, but mostly just ready.  I have started on my checklist to apply for the Katie Beckett waiver.  Also, was wondering about that vaccine form you talked about , for liams school?  Hope all is well with you and your little ones. This year is flying by so fast and i cant believe we are almost at november already! The twins will be 1  on Nov 30. I swear it was just like yesterday we were bringing them home :) ttys, Alex [Quoted text hidden] -- Alex

---

Karri	Sun, Oct 28, 2012 at 7:32 PM
To: alex
Hey, Alex. Sounds like you're getting a lot done. Good job. First, probiotics. There are lots of good options. My son has been on both Culturelle and ThreeLac in the past. I also really like (maybe even prefer) the brands Custom Probiotics and Klaire. You can always switch if you don't like the one you're on. Just be mindful that Culturelle, to my understanding, has a very low level of casein--so if you're new to the diet, you might want to try something else first just to be sure it doesn't interfere with what you're trying to do with the diet. It sounds like this new local doctor could be a great resource for this kind of stuff. I am glad you found someone and got in quickly. As for Marcus, it's hard for me to say because Taven had already been diagnosed when we got there. So I never saw a medical doctor there, just PhDs. At our appointment they talked to us about all the therapy programs they offer, asked us which ones we might be interested in (we put our names on all of the wait lists), and observed Taven playing. I remember being really scared because the waiting lists were so long, and it did take us a year to get into the Language and Learning Clinic--but it was so worth it.  The only other thing I will say is that I don't think all the MDs at Marcus support biomed treatment--so you might get a little push back. But I never spoke to them personally so I may be wrong. I will say that the LLC staff was very supportive of Taven's diet restrictions, and he never had an infraction there. Good job getting the Katie Beckett process going. I just got our annual review forms (you must fill out forms each year to keep it). Just wanted to let you know that the forms might be emotionally hard (meaning what they say about Liam), but my doc says to make it seem as bad as possible while still being truthful. Once again, it's worth it if it gets my kid what he needs. I will attach two different  vaccine exemption forms for you. Just pick which one you like, print it, have it notarized, and give it to the school. It's a state law that you don't have to vaccinate so you should have no problems. The schools just need it in writing. Good luck at your appointments. --Karri 2 attachments samplevaccineletter.doc 50K ExemptionVacLib-Georgia-1.doc 31K

---

alex	Wed, Oct 31, 2012 at 9:18 PM
To: Karri
Thank you for the vaccine letters and for everything.  Super grateful or you and this program! Our appointment was pretty basic,  just an initial eval to see if Liam would qualify, which he does. The only not so great thing is, our next appointment for the official eval and diagnosis- isnt until March. Big sigh.  But good things are ahead i can feel it. They got us on waiting lists for Speech and learning, and for feeding therapy. they gave us a written recommendation to give his school, requesting he attend more days and receive OT to help with his fine motor skills.  they gave us some helpful potty training info that i can begin trying to implement at home. In the meanwhile, i am continuing with our own interventions and at home play therapies. :)  I ordered some TMG with folic acid from Our kids ASD (kirkman labs) and it came today so we'll be adding that to his supplemental orange juice "cocktail" in the morning :) Did you ever try TMG or DMG? We'll be getting the probiotics next, there are soooooo many different kinds. I looked at the brands you recommended and noticed one has to be prescribed by a doc, so i may just wait until next week when we talk to this new pediatrician to see which one may be best for Liam. We'll be changing Jasons insurance very soon and hopefully we'll be able to get some additional therapies going for Liam.  Have you ever heard of the Joseph Sams school? I have inquired about their scholarship availability... I feel like everything , when it comes to getting him officially diagnosed and therapies and such....are happening at a snails pace....... But, we'll get there!  Alex [Quoted text hidden] -- Alex

---

Karri	Tue, Nov 13, 2012 at 12:00 PM
To: alex
Hey. Sorry for not replying sooner. I have a bad habit of reading e-mails, thinking I'll respond when I have more time, then forgetting about the e-mail because it's already been read. Anyway, sorry. Sounds like you're making progress. Yes, Taven takes DMG twice a day. It helps him stay calmer at school. By now you have been to your new doctor, I think. So how did it go? Did you agree on a probiotic to try? Hope things are going well and that the school is implementing a new plan for Liam. --Karri [Quoted text hidden]

---

alex	Wed, Nov 14, 2012 at 8:33 AM
To: Karri
Dr Jill Dickerson is a Godsend. I didnt ask her straight out but but i think she is pretty much a DAN Doctor minus the DAN label. Maybe she does it that way to be able to still take certain insurance  or something along those lines, i don't know. But it was so incredibly refreshing to finally have a pediatrician who gets it and is on board and on Team Liam. We'll be taking the twins there too for their 1 year wellness visit (which will not include vaccines and which Dr Jill completely agreed with) She took blood and is running tests and we will be taking stool and urine samples, etc... She prescribed something for yeast and recommended Kirkman Labs Pro bio gold for a pro-biotic.  The school situation is not going how i would like, His teacher pushed back when i asked fro more days and for OT. She said that she doesn't think he is ready for more days and that we could "revisit" the topic again come the new year and talk about maybe adding another day. She seems to be the ONLY ONE who thinks that though. Even Dr Jill said Liam should be going more than two days. His teacher even pushed back on getting him OT. She said that what they do in class is about the same thing and OT would be doing with him. Needless to say i am not super happy about her response and once again someone is putting up another wall for us to have to pound down.  We are going to wait until after the holidays then call an IEP meeting in January so that we can get these changes made. We wont be taking no for an answer and if we have to will hire a lawyer. I wish we could afford a private school for him.  Liam is having trouble falling asleep at night again lately. Even if hes exhausted he just fights it and it is a battle to get him to sleep. We were doing well for a while but for some reason he's been having issues again and i am not sure what is causing it. We have been allowing a few food items with soy into his diet, only because he has such a limited palate and so few foods he will eat, but i am thinking this might be the cause? I dont know. I guess we'll see when some of these tests come back.... Did you ever have sleep issues with Taven?  [Quoted text hidden] -- Alex

---

Karri	Wed, Nov 14, 2012 at 10:53 AM
To: alex
Oh boy, yes. Taven has a lot of sleep issues. The yeast seems to be the biggest problem. It causes night wakings and he will sometimes stay up for hours. As for getting to sleep, I give both my kids chewable melatonin (made by Kirkman). It helps them fall asleep, but doesn't keep them asleep. So if it's getting to sleep that is the problem, you may want to ask Dr. Dickerson about a melatonin dosage for Liam. (I have heard of Dr. Dickerson, but thought she was in Macon. Is that right?) Sorry about the school. So frustrating. I feel angry just hearing what they told you. If a teacher does OT, then why does the school have an OT? Sometimes they make no sense, and I get the distinct impression it's all about money and not necessarily about what's best for our kids. Yuck. Sorry, I don't want to rant. One step you can take before getting a lawyer is hiring a child advocate to go with you to the IEP meeting, and I'd recommend you ask for a meeting soon. The only advocate I know is my TACA mentor, Debbie Dobbs. I'll include her contact info. She is from Alpharetta, but may travel to you or be able to put you in touch with someone closer to you. Glad your appointment went well. --Karri Debbie Dobbs, MS Master of Science Educational Consultant & Child Advocate Health Care Consulting Services 678-315-2498 cell 678-475-0280 fax debbie@debbiedobbs.com www.debbiedobbs.com [Quoted text hidden]

Kirkman Labs Super Nu Thera

Its been about a week since we began giving Liam Super Nu Thera, and two days since he has received the full dosage (its recommended to work up to the full dosage amount, which for him is a teaspoon. The amount is based on weight.).

I am not sure if its the Super Nu Thera, but the past two nights he has gone to bed with no fight. He was always a good bed time person until he reached 2. then something happened idontknowwhat, and for the most part its been a battle since to get him to bed. He would occasionally got through calmer periods but always went back to fight the good ol bedtime fight. He does sleep through the night though thank God, since he was 6 months. I have heard of a lot of children like Liam who wander the house at night because they cant sleep. So thank goodness for that and i am grateful.
But its tough so hopefully the supplements really are making a difference and we can finally get a bit of relief from the bedtime battles. :)

 He also has been doing really well at school. Miss Jill and his bus driver reported that on the bus Liam was smiling, laughing and playing around. At school today he was in good spirits and was well behaved up until the end of the day, during speech therapy. She said she thinks that he was just over it and maybe got a little overwhelmed, which can happen from one moment to the other and that is ok. He completed all but one of the play therapies and began throwing a fit so she just let it go and he was fine after that.
Also he been going pee pee in the potty for her which is awesome, and here at home i am also putting him on the potty throughout the day but he wont go for me!  He went for daddy the other day, so what the what? LOL

Anyways, it was good to hear her say how much he has improved. My goal is to get him to 3 days a week instead of just 2 because i feel he needs it. Also since we wont be able to get any additional speech therapy or OT on our own until the new year (i hate insurance companies) i pretty much only have the school to fall back on for his therapies until then, so i know it would be beneficial to him.
I spoke to miss jill about it today and she said that since he is still adjusting we don't want to overwhelm him and that we should discuss it again after the holiday. I don't necessarily agree but am willing to wait it out for a bit.

I also was lucky enough to receive a mentor, through the TACA mentor-ship program, which rocks. we began emailing a bit today and i am so grateful to be able to have someone, a parent that has gone through the same things we are going through now, to bounce things off of and just get some all around general guidance and advice. It feels good to have someone that been though it, period. I know there are thousands and thousands of families like us out here and unfortunately that number is growing, but it can still sometimes feel like you are just floating out there...

 On a positive note my new mentor gave me a bunch of really great resources to check out. I will also be applying for the katie beckett waiver once we get an official diagnoses and from what i understand it pays for any and all therapies Liam needs that isn't covered by our insurance. Which is like all of them LOL (The madness i tell ya THE MADNESS lol) Another plus about the waiver is that they dont go off of income which for us is good because we are right in the middle of fucked and not so fucked for lack of better terminology. (this whole process is really making me curse like a sailor! lol oh well, good thing its just a word. haha so simma down nah! )
So PRAY! Pray that we get the waiver. God KNOWS we need it. Even if you don't normally pray just do it. DO IT! For us. For that precious little face below in that adorable picture :)

ok!

So as i was saying.......
We have some positive interactions taking place over the next few months. I feel that the coming year will only get better for Liam and us.
How can it not, when you have faith. And a brain ;)
Besides, look at  that face. How can that face not bring instant joy to your heart?

Man i love that boy. Funny thing is he doesn't even know just how much :)

One of my favorite movie quotes goes: "Its all happening!"

Its all happening.
Truth is , sometimes you just have to make it happen. And I am.



And so, we continue to soar....

A rant.

Do you know 1 in 88 boys now get diagnosed with autism. 1 in 88. that is SCARY. it is an epidemic. It used to be in the 60 and 70s, 1 in like 10,000. Autistic people used to be a rarity, now its become common. What is happening to our babies!!??!! And although girls are diagnosed less frequently the number is still high and the diagnosis is usually heavier for girls. like it affects them harder. How sad is that? its heartbreaking i tell you!!
Why? You know???? Why Liam? why him? Why us? Why any child? Why SO MANY? Why is that number only GROWING???
DOESN'T THAT SCARE YOU?!?!?
If i were a young woman trying to have a baby now i would BE VERY AFRAID.
Why is no one seemingly doing anything about it???
Our own pediatrician cant even help, has no answers. He is supportive when i come to him with this or that but THAT IS THE PROBLEM. I am coming to HIM with ideas and research and such. Isn't it supposed to be the OTHER WAY AROUND??? WHERE IS THE HELP???? Where is the GUIDANCE?? Not even a, hey, i heard about this one thing that might help or hey, theres this new thing.....No. none of that from our regular pediatricians.
Why are we thrown into the unknown and left to sink or swim??? THANK GOD I AM NOT AN IDIOT and am a pretty resourceful person because that's what happens. We are left to our own resourcefulness. i mean what about people who aren't savvy with internet or don't know the right questions to ask and don't even know whats out there that can help their child??? Poor child!!! Poor family!!!
I mean our pediatrician is great for the usual stuff, but when it comes to Liam and anything autism related all he does is REFER ME TO SOMEONE ELSE. WHAT THE FUCK???
AND, WHY WONT INSURANCE COMPANIES COVER TREATMENTS THAT HELP?!?!?! IT IS A FUCKING JOKE!!
What is it going to take?? A president of the united states with an autistic child in order to put new policies in place to HELP OUR CHILDREN????? What is it going to take??  WHAT IS IT GOING TO TAKE.
We pay good money for health insurance and pay our taxes.
But we make too much to qualify for most programs that would help Liam and we are too broke to afford to pay for them out of pocket.
AND OUR STUPID INSURANCE COMPANY REFUSES TO COVER TREATMENTS THAT WOULD ESSENTIALLY TREAT CHILDREN LIKE LIAM, VERY WELL IN MOST CASES IF NOT ALMOST COMPLETELY. DOES ANY OF THIS MAKE SENSE TO YOU???? ITS PRETTY MUCH LIKE THEY ARE SAYING EFF YOU AND YOUR CHILD WE DONT GIVE A SHIT BECAUSE THERE IS NOT ENOUGH "RESEARCH" OUT HERE TO PROVE JACK.
WHAT THE?!?!?!?! The PROOF for your research IS LIVING IN MY HOME, in thousands of homes and the SUCCESS stories are reported over and over and OVER.The treatments WORK for the most part and SHOULDN'T THAT BE ENOUGH to prove your stupid so called research that probably isn't even happening anyway????
The PROOF is happening RIGHT NOW and is happening for thousands of families that are having to take a majority of  the treatment process and healing of their children in to their own hands. THAT IS NOT OK.
 I HAVE INSURANCE. Why is it so hard to get proper treatments for my son???Why???
Why does this process have to be so difficult?
I mean the whole situation is already a difficult one on its very own.
Why should i have to continue hitting wall after wall after wall, in order to get proper treatments for my son??? TREATMENT THAT WILL HELP HIM.
I DON'T UNDERSTAND.
WHAT IS THE POINT OF EVEN HAVING INSURANCE?
You know, I am a pretty persistent person and i am hell bent on making this shit happen. maybe its not happening as quickly as i like but i will never give up. I feel bad for the front desk people at the offices of doctors and medical facilities that i am trying to get something going from and feel sorry for the customer service people at Aetna (YOU SUCK AETNA) because i will not give up. i am a relentless beast when it comes to making sure Liam and any of my kids for that matter get what they rightfully deserve, and need.
And there are no answers. None. Its maddening and ridiculous and pathetic and sad...............................

Sorry went on a bit of a tangent there.... wooooosahhhhhhhhhhh...........
Ufff! That actually felt good.

Chronicling our journey

"So here's the plan: We go forward with joy, hope, gratitude, courage and humor, we boost each other up with love and encouragement, and we don't take things too seriously..."


This is the story of our beautiful 3 year old boy Liam, and our family journey through Autism.
Big brother to 10 month old twins Daisy and Sam, little brother to Clayton and incredibly loved by his mommy and daddy.

Some of his favorite things are to play on his water table and in his pool, swing, go to parks, go on walks with his mommy, monkey joes (or any bounce house will do), blow bubbles, take baths, jumping, runng and climbing, chase after our pets, collect rocks, draw, play piano, dance and listen to music (i love dancing with mommy), watching yo gabba gabba/wonder pets/or team umizoomi and wrestling with daddy.
He loves to eat chicken nuggets, bananas, pot pie muffins, potato chips, fruit and veggie smoothies, applesauce (mommy sprinkles a little bit of cinnamon and brown sugar on top for me)and anything with chocolate. And gummies. Loves gummies.

Liam is a smiling, laughing, loving, snuggling, happy, amazing kid on the go go go! and an all around blessing to all who are lucky enough to have him in their lives and hearts.

My purpose here, is to log our steps, our highs and lows, challenges and successes.

We begin the process to have Liam officially diagnosed this month. On October 30 we have our first appointment at The Marcus Autism Center.
However, we decided a while back that we were not going to wait for an official diagnosis, and began some early interventions and healing about a year ago.

Since this all began, i have graduated with a PHd in Google research :) .
I have spent countless of hours researching online, reading books, emailing, calling and talking to people who may be able to give us more insight, and provide us with guidance.
It is certainly an ongoing journey of discovery as well as an enormous learning experience, one which i have torpedoed into and will never give up on.

At some point i will write and give a more in depth perspective about our personal and emotional journey  from the very beginning. In hindsight, we noticed things from very early on, I would say as early as 4 months.  There was no "regression", like the majority of the stories you hear about kids, after receiving big rounds of antibiotics or getting vaccines and having adverse reactions before age 2. None of that happened.

For now i will begin just by documenting our bio-medical interventions as well as therapies and anything else we are attempting in our battle against this thing called autism. Jenny McCarthy said it best hen she called moms of kids on the spectrum, "Mother Warriors".
That is precisely what it feels like.

Liam was still completely non verbal at the the age of 2- meaning he had not a single word in his vocabulary. He also did not gesture, such as point to things or wave (these were some of the first "red flags", very early on). His method of communication with us when he wanted something was to grab for the object or hand us the object, or if he was hungry or thirsty he would go into the kitchen and sit or stand by his snack table.

Anyhow, after some research and a few referrals, i contacted the Babies Cant Wait Program . It took them a while to send someone out, only because they didn't have anyone for our area at the time (The therapist come to your home). After almost six months of waiting, he finally began receiving speech therapy, and occupational therapy.

Wanda was the first speech therapist to come out, and she was the first to mention that she believed Liam had something called Sensory Processing Disorder, also known as SPD. More specifically, that he was a Sensory Seeker.
The one thing that really was like a DING DING DING! moment for me was when she described one of the traits of a sensory seeker, which was always smelling things. Like everything. From a rock to a table to a new person almost everything Liam will come in contact with, he will first smell. We thought this was just a cute, quirky personality trait in the beginning, before we had any idea what was really happening.
So anyways, when she described this trait, this "Stim" , i about fell on my knees. FINALLY someone was getting it.....which meant i was starting to really get it too.

I had already begun to research things and had come across a few websites talking about SPD,  and so my instincts were telling me that that Liam may fall into that category.
SPD often goes hand in hand with Autism, but sometimes people just have it on its own. There's are many types of SPD. Some people are the opposite of Liam and instead avoid sensations. The list of symptoms is long and you would be surprised at how many you or someone you know may have :)

At this point we still didn't really know, or want to think that Liam was on the spectrum for Autism. In fact at this point i didn't even know what "on the spectrum" meant. We kept saying it had to "just" be SPD, and maybe ADD or ADHD. Maybe hes just a late talker. Maybe maybe maybe. We kept waiting for him to "snap out of it", start talking and everything else would just fall into place.

Hope is a funny thing, and has an ever changing dynamic from what i have come to learn.

Once we began seeing his speech therapist Jill on a regular basis, we began to see a positive change almost immediately. She was not technically an occupational therapist, but because Liam is a sensory seeker he has a lot of sensory needs and by default she had to utilize a lot of OT and Sensory Integration techniques in order to get him to focus on the speech therapy stuff. It worked.
She worked with him to try to get him to focus, and to be able to engage him.
She taught me about play therapies and PECS.

Ginger, the occupational therapist came in much later in the game, and Liam had a harder time clicking with her. She was great though, super sweet and full of information.
I have learned SO MUCH from his therapists, the information i was able to absorb was invaluable.
Ginger, worked with Liam on fine motor skills. Self feeding by using utensils (he has mastered using a spoon since), playing with toys appropriately, sitting for longer periods of time at the table (also doing very well with this for the most part now), drawing (which he never used to show ANY interest in, be;ive me i tried over and over and even with Ginger and then about a week before he turned 3 he picked up one of my highlighters and started scribbling on my notebook just like that. Since then he draws every day a few times a day. He loves to draw.) , things like that.

He had/ has the ability, its just getting him to hone in, focus and interest him- to show him how to do it, and getting him to continue to do it.

Before therapy and the GFCF diet (more about he diet shortly) Liam was all over the place. It was seemingly impossible to engage him or to get him to focus. He did not have any verbal cues. He did not play with people. He engaged in repetitive play and very simple play. He had a lot of stims. opening and closing cabinet doors, running randomly through the house, spinning everything he could get to spin......now, not so much. He has the occasion stim (mainly the need to want to jump a lot) but its been greatly reduced.

So, more about the Diet. Around the same time that Ginger started, and about halfway into therapy with Jill we began the GFCF diet.  Gluten free, Casein (dairy) free, and Soy free diet (GFCFSF). This diet is known for people who suffer from Celiac disease but, is also known as The Autism Diet.
A few more great links on the GFCF diet and Autism:

Talk About Curing Autism Now- GFCF Info (this entire website has become my autism bible)

GFCF.com

GFCF Kids

 I am not sure if it was the GFCF diet, or therapy or a combo of both or maybe just that he was getting older too (plus A LOT of praying) that made many things start happening around this time.
It was like something clicked and a fog began to lift.
There have been many improvements and breakthroughs and there continue to be since.

The Babies Cant Wait Program  ends at age 3. In September, he transitioned to a special needs preschool program here in our county. This program also provides speech therapy, occupational therapy and his teacher has a degree in special needs education. It has been a challenging start but its been about a month now and he is beginning to adapt.

However, Liam needs additional ongoing therapy, more than what the school provides. We are in the process of setting that up as well. Insurance companies SUCK by the way.

Now, we are in the process of creating a bio medical protocol for Liam.
Here is another great link on Biomedical Interventions.

One of the first supplements we are trying is made by Kirkman Labs and is called Super New Thera.
I began last night, by giving him 1/4 of a teaspoon in orange juice.
This morning and also this afternoon he received the same amount.
We are going to work up to 1 tsp. a day for two weeks. After which we will begin with DMG.
I am also beginning research on treating an overgrowth of yeast in his gut which i have a feeling he has.


And so we continue on this journey.....

Dont follow the herd. Do your research, ask questions and don't be afraid to follow your instincts.

 http://articles.mercola.com/sites/articles/archive/2011/10/30/the-greater-good.aspx

I realize this article discusses more than just the link between vaccines and autism. The impact of over vaccinating our population is much wider than that. But i just wanted to share our particular story.

While i don't believe Liam's autism was caused by vaccines i do agree that vaccines, particularly the MMR and DPV1  can be a trigger for children who are at a higher risk of developing autism. Liam autism is known as infantile autism, we noticed little things from very early on in his infancy.
However, the majority of cases i have come across are from children developing autism at a later age, usually around 18 months or so. These children regressed developmentally after receiving those particular vaccines. Another major trigger i have noticed a lot in my research for young children is overexposure to antibiotics.
Prior to this journey that we are on with Liam i knew nothing and didn't ask questions about vaccines, i just followed the herd. I am not against vaccinating by any means. But i agree there are safer ways to go about it and there are some vaccines that we just dont know enough about yet to know if there are safe and some are that are just unnecessary all together, in my opinion. We are delaying the twins vaccines until they are little older, more particularly MMR and DPV1 which we are going to put off until they are over the age of 2.  Aafter researching and because of their higher risk, this is our choice for our family.
Don't follow the herd. Educate yourselves. Ask questions.