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 |
|
|
|
|
|
No comments:
Post a Comment