Re: Getting Desperate

[Guest guest]

I am so sorry to hear that. I have been in your shoes...feeling alone and desperate. My son was diagnosed ASD right at 2 years old, but I knew he was on the spectrum before that. He went through Babies Can't Wait through our county and received 30 mins. of speech therapy once a week (he had a severe speech delay...wasn't really saying anything at age 2), and they didn't have any OT's available at the time. I took him to a psychologist to have him go through a series of tests, and the results came back that he was indeed on the spectrum. My heart sank, even though I knew deep down even before I had the confirmed diagnosis. We have gone through a company called Reinforcement Unlimited in Woodstock that has been a tremendous help for us. They did all the testing and evaluations and even offer ABA therapy services through

their office, as well. It has been such a life saver for my son, who is now 5 and doing WONDERFULLY! The ABA therapy has made ALL the difference over the past 3 years...that and conjunction with the Gluten free/Casein free diet. I saw such HUGE changes in him once I took wheat and milk/dairy out of his diet. More focus...better eye contact...no more gassy, upset stomach...which all lead to better moods and more productive therapy sessions. That is something you can definitely try...there are so many foods available now that are gluten free. I highly recommend that you start with the diet. I have taken my son to a DAN naturopath and spent thousands, but the FIRST thing he had me do was to take away the gluten and casein from his diet. It was hard at first, but after 3 or 4 weeks, it was SO worth it! We also put my son on a broad spectrum vitamin (Kirkman's Spectrum Complete is what we use) and noticed some positive changes as well. Kids on the spectrum

seem to be vitamin deficient, and some of their behaviors are because they are lacking the vitamins and minerals their body needs to develop and function normally. I am not saying this is a cure all, but it's an affordable start. Try to find an ABA therapy provider that takes your insurance or at least partially. Maybe you can work out some kind of payment plan for therapy. All I know is that early intervention is key...my son is living proof. He now goes to a regular pre-school and the only difference that any one notices is that he has a speech delay. We are working hard, and he is getting there. Your son will, too! Please let me know if I can help you in any way. As I said, I know what a scary and lonely journey this is for you. I educated myself by reading EVERYTHING online and Google searching any advice that anyone gave me. I followed my gut, and proceeded with the interventions that made sense to me. Good luck....you are asking for help, and that

is a step in the right direction :)eTo: autism-georgia Sent: Wednesday, September 14, 2011 9:30 AMSubject: Getting Desperate

I really hope that someone will be able to advise me because I am feeling truly lost. My 19-month-old son is on the autism spectrum; he has not been diagnosed officially due to his age, but we have been told as much by a pediatric neurologist and I myself have no doubts. The most obvious and heartbreaking sign of this is an almost complete lack of interest in people. Despite working for a couple of months in the Floortime model at home, I often feel that he is utterly indifferent to my presence. As

difficult as this is for me emotionally,

what really keeps me up at night (literally) is the feeling that I am failing him by my inability to secure services for him. When I first understood that he

was autistic, I had high hopes for therapy, but it is increasingly looking like I will not be able to get him any meaningful therapy at all, and my hope is evaporating. My son gets 2 hours of OT a month (not a typo) through Babies Can't Wait and that is all. It is their opinion that he is making progress towards meeting his milestones, and while that is technically true, the underlying issues are going completely unaddressed. The neurologist referred us for occupational therapy in a hospital setting, speech therapy, and $4,000 worth of genetic tests. We couldn't dream of affording any of it. My husband I both work, and our combined income is about $1,000 a year too much to qualify for Medicaid or SSI. We can't get PeachCare because we do have health insurance through my husband's employer; unfortunately, it is a high-deductible plan that doesn't begin to cover any expenses until we've paid $3,000 out of pocket, and we

just don't have the money. I am in the process of applying for a Beckett waiver for Medicaid, but the two people I've spoken with in the course of the application process have expressed skepticism that we would meet the level of care required for approval. I've also contacted Children's Medical Services and a couple of other agencies and have been turned away from all of them. I don't know what to do anymore! We live paycheck to paycheck, and our lifestyle isn't at all extravagant. We share one car that's over 15 years old, we don't have cable, rarely eat out, my shoes are falling apart... I could go on and on. There is no fat to trim. Yet the message I'm getting is that we're on our own with this, that I must someone find a way to pay for interventions that will likely cost more than we make. The pressure is unbearable.

[Guest guest]

After reading and appreciating your reply to another ASD mom, I starting thinking about my own son and the gluten-casein free diet. We have not tried the diet, but I am wondering if you saw other GI/stomach/stool problems other than upset stomach and gassiness?-Dee Getting Desperate I really hope that someone will be able to advise me because I am feeling truly lost. My 19-month-old son is on the autism spectrum; he has not been diagnosed officially due to his age, but we have been told as much by a pediatric neurologist and I myself have no doubts. The most obvious and heartbreaking sign of this is an almost complete lack of interest in people. Despite working for a couple of months in the Floortime model at home, I often feel that he is utterly indifferent to my presence. As difficult as this is for me emotionally, what really keeps me up at night (literally) is the feeling that I am failing him by my inability to secure services for him. When I first understood that he was autistic, I had high hopes for therapy, but it is increasingly looking like I will not be able to get him any meaningful therapy at all, and my hope is evaporating. My son gets 2 hours of OT a month (not a typo) through Babies Can't Wait and that is all. It is their opinion that he is making progress towards meeting his milestones, and while that is technically true, the underlying issues are going completely unaddressed. The neurologist referred us for occupational therapy in a hospital setting, speech therapy, and $4,000 worth of genetic tests. We couldn't dream of affording any of it. My husband I both work, and our combined income is about $1,000 a year too much to qualify for Medicaid or SSI. We can't get PeachCare because we do have health insurance through my husband's employer; unfortunately, it is a high-deductible plan that doesn't begin to cover any expenses until we've paid $3,000 out of pocket, and we just don't have the money. I am in the process of applying for a Beckett waiver for Medicaid, but the two people I've spoken with in the course of the application process have expressed skepticism that we would meet the level of care required for approval. I've also contacted Children's Medical Services and a couple of other agencies and have been turned away from all of them. I don't know what to do anymore! We live paycheck to paycheck, and our lifestyle isn't at all extravagant. We share one car that's over 15 years old, we don't have cable, rarely eat out, my shoes are falling apart... I could go on and on. There is no fat to trim. Yet the message I'm getting is that we're on our own with this, that I must someone find a way to pay for interventions that will likely cost more than we make. The pressure is unbearable.

[Guest guest]

Hi,There were many issues that cleared up with the removal of gluten and casein. He always had horrible stools...either pebbles (seeming like constipation) or the complete opposite, which was disgusting, mustard colored, foul smelling stool. Sometimes it even looked like there was undigested food in it. Even now, if he accidentally eats something with gluten, that is how is poop will be. Also, I knew dairy was an issue when he would wake up from his nap completely cranky and inconsolable after eating his lunch of grilled cheese, milk and yogurt. He wouldn't stop crying until I gave him gas drops and we would have to drive around the neighborhood so he would calm down...he was in so much pain, but it took me awhile to figure it

out. I must admit, the diet is HARD....but so worth it! We saw such positive changes in him after a few weeks (about 3-4 weeks), and if we didn't change his diet, he would never have been able to focus on his therapy sessions and progress as much as he has. I know when I am in pain, the last thing I want to do is listen to anybody It's worth a shot...at any rate it is a MUCH healthier way of eating! Good luck :)To: autism-georgia Sent: Wednesday, September 14, 2011 12:34 PMSubject: Re: Getting Desperate

After reading and appreciating your reply to another ASD mom, I starting thinking about my own son and the gluten-casein free diet. We have not tried the diet, but I am wondering if you saw other GI/stomach/stool problems other than upset stomach and gassiness?-Dee Getting Desperate I really hope that someone will be able to advise me because I am feeling truly lost. My 19-month-old son is on the autism spectrum; he has not been diagnosed officially due to his age, but we have been told as much by a pediatric neurologist and I myself have no doubts. The most obvious and heartbreaking sign of this is an almost complete lack of interest in people. Despite working for a couple of months in the Floortime model at home, I often feel that he is utterly indifferent to my presence. As difficult as this is for me emotionally, what really keeps me up at night (literally) is the feeling that I am failing him by my inability to secure services for him. When I first understood that he was autistic, I had high hopes for therapy, but

it is increasingly looking like I will not be able to get him any meaningful therapy at all, and my hope is evaporating. My son gets 2 hours of OT a month (not a typo) through Babies Can't Wait and that is all. It is their opinion that he is making progress towards meeting his milestones, and while that is technically true, the underlying issues are going completely unaddressed. The neurologist referred us for occupational therapy in a hospital setting, speech therapy, and $4,000 worth of genetic tests. We couldn't dream of affording any of it. My husband I both work, and our combined income is about $1,000 a year too much to qualify for Medicaid or SSI. We can't get PeachCare because we do have health insurance through my husband's employer; unfortunately, it is a high-deductible plan that doesn't begin to cover any expenses until we've paid $3,000 out of pocket, and we just don't have the money. I am in

the process of applying for a Beckett waiver for Medicaid, but the two people I've spoken with in the course of the application process have expressed skepticism that we would meet the level of care required for approval. I've also contacted Children's Medical Services and a couple of other agencies and have been turned away from all of them. I don't know what to do anymore! We live paycheck to paycheck, and our lifestyle isn't at all extravagant. We share one car that's over 15 years old, we don't have cable, rarely eat out, my shoes are falling apart... I could go on and on. There is no fat to trim. Yet the message I'm getting is that we're on our own with this, that I must someone find a way to pay for interventions that will likely cost more than we make. The pressure is unbearable.

[Guest guest]

Carmen,

My heart goes out to you. Know that although I think we all feel alone there are more of us around than anyone cares to admit. Our lives are nowhere near where we envisioned them for our children. One of my daughters and one of my sons are Asperger. My son has achieved that diagnosis through different therapies from his autism diagnosis at an earlier age. Like you said, I knew on day one there was something not right. Being "high-functioning" there is truly no help for them and everything we do comes out of pocket even though we have insurance also. The problem is what works for them is not psychological meds only so...not approved. I wanted to tell you something that will be hard for you to believe right now even with your mother connection. Once my son began recovering and began to talk, he had memories of things even from when he was two. I mean DETAILED memories. He still doesn't see his inappropriateness or autism in those memories but he WAS there. There have been many stories like his. He was always there, always loved us, just couldn't reach us. Keep reaching for him. Act like you know he knows even when you don't believe. He will feel it one way or the other. They are more intuitive than the neurotypical person even if it doesn't look like it. As you begin this journey, know that it will be the hardest thing in your life. There are no easily answers and none of them are given for free. Just know it's not in the getting knocked down, it's in the standing back up. Never give up. You are getting an early start which is something we didn't have. Autism disorders are so much more acknowledged now. I wish you success with your son!! GFCF, fish oil, brain balance-can get a book Disconnected Kids for $12 and do at home, HBOT, Glutathione, vits esp vitD, cholesterol bc blood test showed low and is used to make neurotransmitters, have helped him the most. Although each kid has their own special blend of what works, I think my son's are common ones.

Getting Desperate

I really hope that someone will be able to advise me because I am feeling truly lost. My 19-month-old son is on the autism spectrum; he has not been diagnosed officially due to his age, but we have been told as much by a pediatric neurologist and I myself have no doubts. The most obvious and heartbreaking sign of this is an almost complete lack of interest in people. Despite working for a couple of months in the Floortime model at home, I often feel that he is utterly indifferent to my presence. As difficult as this is for me emotionally, what really keeps me up at night (literally) is the feeling that I am failing him by my inability to secure services for him. When I first understood that he was autistic, I had high hopes for therapy, but it is increasingly looking like I will not be able to get him any meaningful therapy at all, and my hope is evaporating. My son gets 2 hours of OT a month (not a typo) through Babies Can't Wait and that is all. It is their opinion that he is making progress towards meeting his milestones, and while that is technically true, the underlying issues are going completely unaddressed. The neurologist referred us for occupational therapy in a hospital setting, speech therapy, and $4,000 worth of genetic tests. We couldn't dream of affording any of it. My husband I both work, and our combined income is about $1,000 a year too much to qualify for Medicaid or SSI. We can't get PeachCare because we do have health insurance through my husband's employer; unfortunately, it is a high-deductible plan that doesn't begin to cover any expenses until we've paid $3,000 out of pocket, and we just don't have the money. I am in the process of applying for a Beckett waiver for Medicaid, but the two people I've spoken with in the course of the application process have expressed skepticism that we would meet the level of care required for approval. I've also contacted Children's Medical Services and a couple of other agencies and have been turned away from all of them. I don't know what to do anymore! We live paycheck to paycheck, and our lifestyle isn't at all extravagant. We share one car that's over 15 years old, we don't have cable, rarely eat out, my shoes are falling apart... I could go on and on. There is no fat to trim. Yet the message I'm getting is that we're on our own with this, that I must someone find a way to pay for interventions that will likely cost more than we make. The pressure is unbearable.

[Guest guest]

Thanks for the additional information. I wish you and your son continued progress.-Dee Getting Desperate>>> > I really hope that someone will be able to advise me because I am feeling truly lost. My 19-month-old son is on the autism spectrum; he has not been diagnosed officially due to his age, but we have been told as much by a pediatric neurologist and I myself have no doubts. The most obvious and heartbreaking sign of this is an almost complete lack of interest in people. Despite working for a couple of months in the Floortime model at home, I often feel that he is utterly indifferent to my presence. As difficult as this is for me emotionally, what really keeps me up at night (literally) is the feeling that I am failing him by my inability to secure services for him. When I first understood that he was autistic, I had high hopes for therapy, but it is increasingly looking like I will not be able to get him any meaningful therapy at all, and my hope is evaporating. My son gets 2 hours of OT a month (not a typo) through Babies Can't Wait and>that is all. It is their opinion that he is making progress towards meeting his milestones, and while that is technically true, the underlying issues are going completely unaddressed. The neurologist referred us for occupational therapy in a hospital setting, speech therapy, and $4,000 worth of genetic tests. We couldn't dream of affording any of it. My husband I both work, and our combined income is about $1,000 a year too much to qualify for Medicaid or SSI. We can't get PeachCare because we do have health insurance through my husband's employer; unfortunately, it is a high-deductible plan that doesn't begin to cover any expenses until we've paid $3,000 out of pocket, and we just don't have the money. I am in the process of applying for a Beckett waiver for Medicaid, but the two people I've spoken with in the course of the application process have expressed skepticism that we would meet the level of care required for approval.> I've also contacted Children's Medical Services and a couple of other agencies and have been turned away from all of them. I don't know what to do anymore! We live paycheck to paycheck, and our lifestyle isn't at all extravagant. We share one car that's over 15 years old, we don't have cable, rarely eat out, my shoes are falling apart... I could go on and on. There is no fat to trim. Yet the message I'm getting is that we're on our own with this, that I must someone find a way to pay for interventions that will likely cost more than we make. The pressure is unbearable. >>

[Guest guest]

" adparkmd@... " wrote:

[Guest guest]

hang in there momma! keep loving him and keep researching and learning as much as you can! Don't stop doing all you can at home. ask the OT for a home program so you can carry over the activities they're doing with him in between sessions. Does he qualify for speech services through babies can't wait? even if he just gets a little, you can do the same with speech - request a home program and carry over the work yourself. in terms of ABA, i think there is a set of DVDs called maximum potential that can teach you to do the therapy at home on your own...same with brain balance - you can buy the book and do the program at home.

i'm an SLP so we do therapy at home all the time! everything is therapy: meal time, play time, going to the store, the park, everything! labeling items you see, constantly talking to him about what's going on - even if he doesn't seem to be interested or listening. he IS listening and he IS in there. we've had the same experience another resonse mentioned...my daughters have extremely detailed memories of things that happened when they were much younger.

this is your call to arms - if no one is going to give you the help you need, you have to do it yourself. when our twins were diagnosed, we were already working hard just to raise twins but the diagnosis just meant we had to work harder...and we did and they benefitted...even when it was our own work and not "therapy" in a clinic.

therapy is important, but growth, development and maturity play a role as well. he will progress as he grows and matures...his language will progress and his sensory system will mature. I'm not saying he'll grow out of it, but he's very young and a lot of development and improvement will occur as he ages.

i have heard that there are grants available and agencies that provide funding for people that are under insured. Have you tried talking with anyone at ASA-GA? Maybe someone there can help you find some funding.

We never got babies can't wait so i don't have first hand experience with them, i have heard of other people getting limited services from them. is there a case manager or someone you can talk with about getting him more OT time? does an MD order hold any weight with them? Maybe your pediatrician would write an order stating that he needs more time. don't forget that once he turns 3 he will get services through the school system - including special needs pre-K if he needs it.

sorry to be so long winded! i truly feel for you and don't want you to give up hope. put on your running shoes because this race is just beginning for you you're starting VERY early and he will benefit from that.

peace,

andi

Subject: Getting DesperateTo: autism-georgia Date: Wednesday, September 14, 2011, 1:30 PM

I really hope that someone will be able to advise me because I am feeling truly lost. My 19-month-old son is on the autism spectrum; he has not been diagnosed officially due to his age, but we have been told as much by a pediatric neurologist and I myself have no doubts. The most obvious and heartbreaking sign of this is an almost complete lack of interest in people. Despite working for a couple of months in the Floortime model at home, I often feel that he is utterly indifferent to my presence. As difficult as this is for me emotionally, what really keeps me up at night (literally) is the feeling that I am failing him by my inability to secure services for him. When I first understood that he was autistic, I had high hopes for therapy, but it is increasingly looking

like I will not be able to get him any meaningful therapy at all, and my hope is evaporating. My son gets 2 hours of OT a month (not a typo) through Babies Can't Wait and that is all. It is their opinion that he is making progress towards meeting his milestones, and while that is technically true, the underlying issues are going completely unaddressed. The neurologist referred us for occupational therapy in a hospital setting, speech therapy, and $4,000 worth of genetic tests. We couldn't dream of affording any of it. My husband I both work, and our combined income is about $1,000 a year too much to qualify for Medicaid or SSI. We can't get PeachCare because we do have health insurance through my husband's employer; unfortunately, it is a high-deductible plan that doesn't begin to cover any expenses until we've paid $3,000 out of pocket, and we just don't have the money. I am in the process of applying for a

Beckett waiver for Medicaid, but the two people I've spoken with in the course of the application process have expressed skepticism that we would meet the level of care required for approval. I've also contacted Children's Medical Services and a couple of other agencies and have been turned away from all of them. I don't know what to do anymore! We live paycheck to paycheck, and our lifestyle isn't at all extravagant. We share one car that's over 15 years old, we don't have cable, rarely eat out, my shoes are falling apart... I could go on and on. There is no fat to trim. Yet the message I'm getting is that we're on our own with this, that I must someone find a way to pay for interventions that will likely cost more than we make. The pressure is unbearable.