So, before Zach and Sophie were both diagnosed with disabilities, I was like a lot of folks out there that think things like this will likely never happen to me. My family, not Steve's, had no incidence of anything regarding learning disabilities, mental illness, physical disabilities, let alone retardation and autism. Steve and I were highly educated people, in the sciences nonetheless - PhD, MS, etc. We were into health and fitness, we ate organic foods, and ran 1/2 marathons, moderate alcohol consumption, never touched an illicit drug in our lives. We took supplements and went to the doctors regularly. I avoided mercury laden fish during my pregnancy, and blue veined cheeses, no cold cuts. So how after all this did we end up with two kids with issues?
The fact is, statistics happen. Random genetic things happen. We were elitist to think that it wouldn't be us. The fact is, that we were afraid of autism. A study conducted at Cambridge indicated that among the children of engineers, autism and related conditions are found twice as often as in the general population and was reported in the IEEE magazine I have a subscription to back in 2006, right before Zach's birth. A neighbor of mine once cracked a joke about it to me. Wow - if she new what happened to us, eh?
I have always had a sense of karma, even though I am a Christian. It is really hard for me to understand that bad things happen to good people. I feel guilt for all my sins, and often wonder if they culminated in the system of life to add up to one big kick in the pants.
Some people have remarked that I sound depressed. I want to clear up this issue right now - I am! But not because of Zach's diagnosis. I enjoy Zach very much and have fun with him. Problems in getting him what he needs feel so insurmountable at times, that my energy level is greatly diminished. We are 4 months into realization he has ASD, 7 months into services, and I just want to see some progress. I spend every waking hour (and there are lots of those) trying to figure out what to do next, researching, making phone calls, sending emails, going to appointments, therapy sessions, and trying to maintain some semblance of a normal life for the family. This is not normal. It is a marathon.
I am grateful for the opportunity God gave me to truly sympathize and understand what complete pain and complete love are. I never knew, although I thought I had an idea. I feel for those parents whose children don't smile like Zach does, who don't want to be touched, who hit their heads against walls or floors. Or what about those kids with physical illnesses and disabilities who may have only a short stay here on Earth. Zach is a terrific kid and has joy in his life. That is all any parents should ever really want for their child, anyway. So for those of you worrying about your kids and if they will get into that college with the best program, or will take a medal in the swim meet, or will get the lead in the school play, RELAX. It aint about that stuff in the end, I can assure you. It is ego, it is elitism, it is foolish, and worrying about those things will never bring you the joy in life God intended.
Thursday, January 15, 2009
Wednesday, January 14, 2009
Blissfully ignorant
Before I had children, I had my nieces and nephews. In loved them all so-o-o much and they brought great joy to my life. I was 12 when I became an aunt - and it was almost like having a baby sister more than a niece in all honesty. I loved taking them places, going to the park, going to the pool, the museum, or having sleepovers. As much fun as this was, I knew that all this fun is not what parenting was about. I saw that it was work - how much work I would not realize, of course, until I became a parent myself.
When we moved to Camillus, we noticed someone else moved into the neighborhood around the same time. They had a child in a wheelchair. I can remember the feeling I had when I first noticed him. My thoughts went to how difficult that must be for the parents - but then they seemed so joyful when they were out playing in the yard with all three of their kids. It took my breath away.
I noticed for this family, a bus coming to pick up the child. I had heard of No Child Left Behind and Americans with Disabilities Act, and assumed that they must receive some help. I didn't know what that was. When Zach was first diagnosed, several people said how lucky we were to live now, that there were all these things available to him that weren't before, that there were services, that there was help. I believed it too, especially when everything seemed so insurmountable, it was the only thing keeping any hope going. Pop went that bubble this past week.
Zach's two dx's and recommended treatments indicate one-on-one ABA therapy. In 1999, the Surgeon General indicated that "Thirty years of research demonstrated the efficacy of applied behavioral methods". Yes folks, it has been around that long. The New York State Department of Health Early Intervention Program (1999) Clinical Practice Guideline Report of the Recommendations for Autism/Pervasive Developmental Disorders. New York State Department of Health, recommends a minimum of 20 hours of ABA a week for autism. The Onondaga County Autistic Spectrum Disorders Resource Guide for Families and Professionals lists ABA as "the predominant approach for treating children."
So what were we told at our 6 month review/IFSP yesterday? There are no ABA resources for children's Zach's age. She went on to describe various resource issues ("there are no certified ABA therapists in the are" she said although I gave her 6 names), there are no existing contracts with the county with any of these individuals (I told her of one woman who was under contract as a social worker and had ABA certification), blah blah blah. I finally told her that legally, resource issues are not a valid excuse for not providing Zach with the therapy he needs. She went on to say, "well what you want, we don't have. " To which I replied something on the order of - this is not about what I want, it is what two professionals have prescribed for him, and the very manuals that you have provided to me recommend. I asked her if the onus was on us to provide these things - to which she quickly backed down.
I cannot imagine being one of these trained monkeys who know damn well what the score is, yet spew their lying politics and rhetoric in the face of people within crisis. If you don't believe in what you are doing, how can you do it? If you believe in the information that you provide for me, than how in God's name do you say it doesn't exist with a straight face?
So no - adequate services are not likely to be provided to Zach anytime soon - at least not on the county's dime. The funny part about this is that thus far - they have not spent one dollar of their money on him - everything has come from our insurance - our $$.
This has got to get better folks.
When we moved to Camillus, we noticed someone else moved into the neighborhood around the same time. They had a child in a wheelchair. I can remember the feeling I had when I first noticed him. My thoughts went to how difficult that must be for the parents - but then they seemed so joyful when they were out playing in the yard with all three of their kids. It took my breath away.
I noticed for this family, a bus coming to pick up the child. I had heard of No Child Left Behind and Americans with Disabilities Act, and assumed that they must receive some help. I didn't know what that was. When Zach was first diagnosed, several people said how lucky we were to live now, that there were all these things available to him that weren't before, that there were services, that there was help. I believed it too, especially when everything seemed so insurmountable, it was the only thing keeping any hope going. Pop went that bubble this past week.
Zach's two dx's and recommended treatments indicate one-on-one ABA therapy. In 1999, the Surgeon General indicated that "Thirty years of research demonstrated the efficacy of applied behavioral methods". Yes folks, it has been around that long. The New York State Department of Health Early Intervention Program (1999) Clinical Practice Guideline Report of the Recommendations for Autism/Pervasive Developmental Disorders. New York State Department of Health, recommends a minimum of 20 hours of ABA a week for autism. The Onondaga County Autistic Spectrum Disorders Resource Guide for Families and Professionals lists ABA as "the predominant approach for treating children."
So what were we told at our 6 month review/IFSP yesterday? There are no ABA resources for children's Zach's age. She went on to describe various resource issues ("there are no certified ABA therapists in the are" she said although I gave her 6 names), there are no existing contracts with the county with any of these individuals (I told her of one woman who was under contract as a social worker and had ABA certification), blah blah blah. I finally told her that legally, resource issues are not a valid excuse for not providing Zach with the therapy he needs. She went on to say, "well what you want, we don't have. " To which I replied something on the order of - this is not about what I want, it is what two professionals have prescribed for him, and the very manuals that you have provided to me recommend. I asked her if the onus was on us to provide these things - to which she quickly backed down.
I cannot imagine being one of these trained monkeys who know damn well what the score is, yet spew their lying politics and rhetoric in the face of people within crisis. If you don't believe in what you are doing, how can you do it? If you believe in the information that you provide for me, than how in God's name do you say it doesn't exist with a straight face?
So no - adequate services are not likely to be provided to Zach anytime soon - at least not on the county's dime. The funny part about this is that thus far - they have not spent one dollar of their money on him - everything has come from our insurance - our $$.
This has got to get better folks.
My baby and "baby" and ABA
So, as I have mentioned before, Zach has shown little progress, and as of late, his speaking any words has really tapered off a lot. I was starting to be concerned that he was becoming nonverbal once again. The correlation I see here is that things have been hopping around here, and I haven't spent time doing a lot of the reinforcement type stuff I would like to . However, yesterday while watching a video with big sis and grandma, after grandma said "baby" when one appeared int he video, Zach repeated it right back. We were so glad to hear him say something again.
So why have we been so busy that we aren't working with Zach as much? Well, first off, my mom has undergone some new things that I haven't written about. Last week, she was taken off her coumadin (used to treat blood clots) so that she could undergo a pain block procedure. Mom has been doing fairly well with the affects of the cancer and its treatment, however, the fact that she has no longer been able to take her arthritis medication because of the coumadin (it's a blood thinner and so are most pain relievers) has left her in a pretty decent amount of pain. Add to this sciatica in both legs, and it has been downright debilitating. My heart aches for her as I see her suffer and know that it has nothing to do with the stinking cancer! At this point, we believe the pain block plus and alternative pain medication that a doctor just discovered for her have given her some relief. Let's hope it continues.
The next business around here has been the attempt to getting Zach the ABA therapy that both evaluations has recommended for him. I have been utterly baffled why this is so difficult. Zach needs ABA. ABA has been around a long time. ABA was recommended by the surgeon general back in 1999 as the best course of therapy for autism. The New York State Department of Health Early Intervention Program recommends a minimum of 20 hours a week of ABA for those with autism. Onondaga County reference it in their Autistic Dpectrum Disorders guide for children under age 5. So why are we told we cannot get it? There are no resources for someone Zach's age, we are told.
So today is the day we meet with Zach's service coordinator to address his Individualized Family Service Plan (IFSP). THE IFSP is supposed to be document and guide and early intervention process. If it aint in there, you aint getting it. So somehow we have to get ABA in there. To me, it sounds like a no brainer. But the pushback is amazing that we have felt regarding this in the various phone calls we have had from his service coordinator and the program coordinator.
Thank God I came across FEAT - Families for Effective Autism Treatment of Central New York. We had contacted a professor at SU who is involved in behavioral treatments and she referred us to them. Oddly enough, I had seen references to them in a few books that I had taken out of the library (the group had donated the books to the library and placed stickers in the front covers) and yet ignored the reference. DUH! Sometimes I am more with it than other times. I will meet with a member on Friday who said they are there to help - although they themselves cannot provide the resources - they are not an agency afterall, but can help us locate resources and make calls, etc. What a relief. The first good news I have heard in awhile. Someone telling me that we will not be cast aside or told to wait.
But as for today - we will see how this IFSP will go. Cross your fingers, say a prayer...
So why have we been so busy that we aren't working with Zach as much? Well, first off, my mom has undergone some new things that I haven't written about. Last week, she was taken off her coumadin (used to treat blood clots) so that she could undergo a pain block procedure. Mom has been doing fairly well with the affects of the cancer and its treatment, however, the fact that she has no longer been able to take her arthritis medication because of the coumadin (it's a blood thinner and so are most pain relievers) has left her in a pretty decent amount of pain. Add to this sciatica in both legs, and it has been downright debilitating. My heart aches for her as I see her suffer and know that it has nothing to do with the stinking cancer! At this point, we believe the pain block plus and alternative pain medication that a doctor just discovered for her have given her some relief. Let's hope it continues.
The next business around here has been the attempt to getting Zach the ABA therapy that both evaluations has recommended for him. I have been utterly baffled why this is so difficult. Zach needs ABA. ABA has been around a long time. ABA was recommended by the surgeon general back in 1999 as the best course of therapy for autism. The New York State Department of Health Early Intervention Program recommends a minimum of 20 hours a week of ABA for those with autism. Onondaga County reference it in their Autistic Dpectrum Disorders guide for children under age 5. So why are we told we cannot get it? There are no resources for someone Zach's age, we are told.
So today is the day we meet with Zach's service coordinator to address his Individualized Family Service Plan (IFSP). THE IFSP is supposed to be document and guide and early intervention process. If it aint in there, you aint getting it. So somehow we have to get ABA in there. To me, it sounds like a no brainer. But the pushback is amazing that we have felt regarding this in the various phone calls we have had from his service coordinator and the program coordinator.
Thank God I came across FEAT - Families for Effective Autism Treatment of Central New York. We had contacted a professor at SU who is involved in behavioral treatments and she referred us to them. Oddly enough, I had seen references to them in a few books that I had taken out of the library (the group had donated the books to the library and placed stickers in the front covers) and yet ignored the reference. DUH! Sometimes I am more with it than other times. I will meet with a member on Friday who said they are there to help - although they themselves cannot provide the resources - they are not an agency afterall, but can help us locate resources and make calls, etc. What a relief. The first good news I have heard in awhile. Someone telling me that we will not be cast aside or told to wait.
But as for today - we will see how this IFSP will go. Cross your fingers, say a prayer...
Monday, January 12, 2009
Second opinion , ABA and dogs
Zach was seen by a developmental pediatrician for another evaluation this morning. We did not give him a copy of the first report from Yale so we could get an independent evaluation. He concurred that Zach is ASD. As for a specific diagnosis, the doctor stated that Zach appears autistic but that he is too young for anything much further. We scheduled a follow up for 9 months, at Zach's 3rd birthday.
Once again, this doctor recommended ABA therapy - if we could only get the damn stuff. I am going to try and look into bringing someone into Syracuse and train people on our nickel. Let's see how long that will take. Wish us luck!
Language is down right now, and eye contact is hit or miss. He said "bubble" in his playgroup this morning and "pop", but refused to say "goodbye".
Zach had fun with his cousin's in Rochester yesterday. He was shy for about an hour, but he warmed up to his cousins - particularly his one cousin Morgan, who is 10. She probably has no idea how special that was. He can be such a social little bugger at times. Another cousin had a puppy with them, and by the time we left, I was surprised to hear Zach say "Lou" as if calling to the dog. Where did that come from? Zach loves dogs - maybe one day, we can get another.
We sure do miss Buddy. His ashes came in today. I guess life is simpler without him right now - we don't have to feed him, take him for grooming, wake up early to let him out, worry about how he is with all the therapists in and out of the house. But I don't think that life is easier without him. I crave having him in my lap and petting him constantly.
For those who don't know Buddy, he was our 30 pound black cocker spaniel. We got him when he was a puppy. At some point in his first year of life, he began to have behavioral issues with strangers and children. I remember how I cried when I realized I had (for all intent a purposes) a mean dog. He never once showed aggression to me, and it seemed to be protective. My mother told me the experience was good for me, because one day I would have children who wouldn't do what I wanted them to do, and I would have an idea how that felt. Boy - she probably had no idea how that would manifest itself, huh?
I hired a dog trainer who did behavioral training. Did it get rid of the aggression? No. But it taught me how to cope with it. Buddy learned a few ways to deal with it, too. In the end, he was a terrific dog that readily accepted my husband when we started dating, and my two children when they came along. He was great with them in fact - I can recall Zach sitting on Buddy riding him in the grass in our backyard just last summer.
So now on to getting Zach (and most likely me) a "trainer". It shouldn't have to be this hard. I sometimes feel like we are drowning and being thrown water balloons instead of life savers. My dog was treated better than my kid. How wrong is that?
Once again, this doctor recommended ABA therapy - if we could only get the damn stuff. I am going to try and look into bringing someone into Syracuse and train people on our nickel. Let's see how long that will take. Wish us luck!
Language is down right now, and eye contact is hit or miss. He said "bubble" in his playgroup this morning and "pop", but refused to say "goodbye".
Zach had fun with his cousin's in Rochester yesterday. He was shy for about an hour, but he warmed up to his cousins - particularly his one cousin Morgan, who is 10. She probably has no idea how special that was. He can be such a social little bugger at times. Another cousin had a puppy with them, and by the time we left, I was surprised to hear Zach say "Lou" as if calling to the dog. Where did that come from? Zach loves dogs - maybe one day, we can get another.
We sure do miss Buddy. His ashes came in today. I guess life is simpler without him right now - we don't have to feed him, take him for grooming, wake up early to let him out, worry about how he is with all the therapists in and out of the house. But I don't think that life is easier without him. I crave having him in my lap and petting him constantly.
For those who don't know Buddy, he was our 30 pound black cocker spaniel. We got him when he was a puppy. At some point in his first year of life, he began to have behavioral issues with strangers and children. I remember how I cried when I realized I had (for all intent a purposes) a mean dog. He never once showed aggression to me, and it seemed to be protective. My mother told me the experience was good for me, because one day I would have children who wouldn't do what I wanted them to do, and I would have an idea how that felt. Boy - she probably had no idea how that would manifest itself, huh?
I hired a dog trainer who did behavioral training. Did it get rid of the aggression? No. But it taught me how to cope with it. Buddy learned a few ways to deal with it, too. In the end, he was a terrific dog that readily accepted my husband when we started dating, and my two children when they came along. He was great with them in fact - I can recall Zach sitting on Buddy riding him in the grass in our backyard just last summer.
So now on to getting Zach (and most likely me) a "trainer". It shouldn't have to be this hard. I sometimes feel like we are drowning and being thrown water balloons instead of life savers. My dog was treated better than my kid. How wrong is that?
Friday, January 9, 2009
Losing it
My baby has autism. This is serious. This is as profound as it can be. Why do people treat this like he has a cold?
We have had absolutely no progress since he has entered Early Intervention in July of last year. That is a whole 6 months with no progress, and no one seems to care but Steve and I. No one seems to think this is significant. We spent a whole lot of money to get an independent evaluation by professionals since the professionals we were working with weren't giving us anything. They recommended a therapy type called ABA. NYS Department of Health recommends ABA in Early Intervention EI program for a minimum of 20 hours a week.
We made the request for ABA at the beginning of December. We were just told today that Onondaga County does not have these services for children Zach's age. So I have read umpteen books about getting into EI and that early treatment may be his only hope. I have read that ABA is the only scientifically proven therapy that works for ASD. I was instructed by the folks at Yale that for ahcild with Zach's profile of ASD that ABA would be the best treatment. And the people who are supposed to be helping us with our child say that it is not available until he is 3. Why doesn't anyone want to help my baby?
They offered us Floortime therapy in its place. The Floortime therapy model is based on the child leading the therapy, where the therapist pursues the childs interests. The problem is that we want Zach to imitate others, and to follow directions - Floortime is not the right therapy for this. Our service coordinator seemed to agree. So what the heck are we to do?
Our health insurance won't cover the therapy. If we lived in Minnesota, Blue Cross Blue Shield would cover it there. We just happen to live in the wrong state. Our insurance is through our company, and is supposefly self-insured. Shouldn't they be able to approve what they want?
This is what is going on if no one can seem to follow my ramblings, an anaolgy:
Scene 1
Month 3 of trying to figure out what is going on.
Mom: My son has cancer.
Service Manager: Oh yes, he likely does. But we can't get him diangosed for another 6 months.
Mom: I will drive out of state to get him diagnosed then and pay with whatever money I have out of his college savings.
Service Manager: Well just make sure I get a copy of the report. And then we can provide him with what he needs.
Scene 2
Month 5 of trying to figure out what is going on. Trip to extreme Ivy League medical school to get official diagnosis by the doctor who is currently writing the medical encyclopedia on cancer.
Dr at extreme Ive League school after tests are run: Yup, he's got cancer. Good luck.
Scene 3
Back home to Nowheresville where no one cares. Month 6 of trying to figure out what to do.
Mom: We got his official diagnosis. They say he needs chemo.
Service Manager: Oh, sorry. We only can offer you penicillin.
Mom: But he needs chemo!
Service Manager: If you wait another 6 months, you may be able to get into a place that can get you chemo. The only thing is they have a 200 person waiting list and you can't get on the list until he is a little older.
Mom: They say he needs help NOW! We have been trying to get help for 6 months. Time is of the essence the doctors told us. Can you do anything to get us on this list?
Service Manager: No. But good luck.
OK - so it's not cancer - but it is that serious. Can Zach die from autism? Jett Travolta reportedly died of a co-morbid condition commonly found with kids on the spectrum - seizure activity. Does Zach have seizures? We are scheduled with a neurologist to begin this inquiry. He has a sort stim, where he holds out his arm and tenses them while he spreads his fingers. Is this a seizure? Possibly. This is serious stuff folks. He needs help now, and all we keep on getting is the run around. I am really beginning to lose faith in people.
Zach will be going to the developmental pediatrician Monday, most likely so that we can be told by someone that he has autism. What a revelation that will be. (sarcasm should be noted) We cancelled his hearing test called an auditory brain response (ABR) because I didn't feel comfortable having my son at age 2 who may have a neurological disorder go under anesthesia. Lots of risk with no obvious reward. His hearing can be tested later.
Steve put a call in to a professor at SU today. She has been somewhat helpful and indicated that the information that was given to us by the county regarding ABA therapy not being available was not true. So now we are being lied to by the people who are the experts and are supposed to be helping us. How much more of this crap can we take? When is it time to call a lawyer?
My son's life is being treated like an inconvenience because some government employee took time off to be with her lovely family instead of doing her job adequately. Are these people overworked? You bet. But here is a chance to help someone - do something real. I will follow through with this kid. This will make a difference. But 6 months has gone by, my insurance has been tapped by people providing services, and there has been no improvement. Is this acceptable to people? Don't charge my insurance company and give me services that do no good if I am just added to the pile of unwanted paperwork on your desk. Set us free to figure things out on our own, rather than be part of this masquerade of help you supposedly are giving.
We have had absolutely no progress since he has entered Early Intervention in July of last year. That is a whole 6 months with no progress, and no one seems to care but Steve and I. No one seems to think this is significant. We spent a whole lot of money to get an independent evaluation by professionals since the professionals we were working with weren't giving us anything. They recommended a therapy type called ABA. NYS Department of Health recommends ABA in Early Intervention EI program for a minimum of 20 hours a week.
We made the request for ABA at the beginning of December. We were just told today that Onondaga County does not have these services for children Zach's age. So I have read umpteen books about getting into EI and that early treatment may be his only hope. I have read that ABA is the only scientifically proven therapy that works for ASD. I was instructed by the folks at Yale that for ahcild with Zach's profile of ASD that ABA would be the best treatment. And the people who are supposed to be helping us with our child say that it is not available until he is 3. Why doesn't anyone want to help my baby?
They offered us Floortime therapy in its place. The Floortime therapy model is based on the child leading the therapy, where the therapist pursues the childs interests. The problem is that we want Zach to imitate others, and to follow directions - Floortime is not the right therapy for this. Our service coordinator seemed to agree. So what the heck are we to do?
Our health insurance won't cover the therapy. If we lived in Minnesota, Blue Cross Blue Shield would cover it there. We just happen to live in the wrong state. Our insurance is through our company, and is supposefly self-insured. Shouldn't they be able to approve what they want?
This is what is going on if no one can seem to follow my ramblings, an anaolgy:
Scene 1
Month 3 of trying to figure out what is going on.
Mom: My son has cancer.
Service Manager: Oh yes, he likely does. But we can't get him diangosed for another 6 months.
Mom: I will drive out of state to get him diagnosed then and pay with whatever money I have out of his college savings.
Service Manager: Well just make sure I get a copy of the report. And then we can provide him with what he needs.
Scene 2
Month 5 of trying to figure out what is going on. Trip to extreme Ivy League medical school to get official diagnosis by the doctor who is currently writing the medical encyclopedia on cancer.
Dr at extreme Ive League school after tests are run: Yup, he's got cancer. Good luck.
Scene 3
Back home to Nowheresville where no one cares. Month 6 of trying to figure out what to do.
Mom: We got his official diagnosis. They say he needs chemo.
Service Manager: Oh, sorry. We only can offer you penicillin.
Mom: But he needs chemo!
Service Manager: If you wait another 6 months, you may be able to get into a place that can get you chemo. The only thing is they have a 200 person waiting list and you can't get on the list until he is a little older.
Mom: They say he needs help NOW! We have been trying to get help for 6 months. Time is of the essence the doctors told us. Can you do anything to get us on this list?
Service Manager: No. But good luck.
OK - so it's not cancer - but it is that serious. Can Zach die from autism? Jett Travolta reportedly died of a co-morbid condition commonly found with kids on the spectrum - seizure activity. Does Zach have seizures? We are scheduled with a neurologist to begin this inquiry. He has a sort stim, where he holds out his arm and tenses them while he spreads his fingers. Is this a seizure? Possibly. This is serious stuff folks. He needs help now, and all we keep on getting is the run around. I am really beginning to lose faith in people.
Zach will be going to the developmental pediatrician Monday, most likely so that we can be told by someone that he has autism. What a revelation that will be. (sarcasm should be noted) We cancelled his hearing test called an auditory brain response (ABR) because I didn't feel comfortable having my son at age 2 who may have a neurological disorder go under anesthesia. Lots of risk with no obvious reward. His hearing can be tested later.
Steve put a call in to a professor at SU today. She has been somewhat helpful and indicated that the information that was given to us by the county regarding ABA therapy not being available was not true. So now we are being lied to by the people who are the experts and are supposed to be helping us. How much more of this crap can we take? When is it time to call a lawyer?
My son's life is being treated like an inconvenience because some government employee took time off to be with her lovely family instead of doing her job adequately. Are these people overworked? You bet. But here is a chance to help someone - do something real. I will follow through with this kid. This will make a difference. But 6 months has gone by, my insurance has been tapped by people providing services, and there has been no improvement. Is this acceptable to people? Don't charge my insurance company and give me services that do no good if I am just added to the pile of unwanted paperwork on your desk. Set us free to figure things out on our own, rather than be part of this masquerade of help you supposedly are giving.
Wednesday, January 7, 2009
GFCF diet part deux
So - concerns on the diet are that Zach is receiving enough calcium and since he is picky about meat, enough protein. A consult with the doctor and the dietitian revealed that Zach requires 16 grams of protein a day. His milk substitutes alone likely cover this - and yes, several of them are complete proteins (soy and hemp milk particularly) As for calcium, his milk alternatives are almost all calcium fortified. Plus he eats broccoli (a terrific source of calcium that is one of the most absorbed forms) and we give him a calcium supplement for good measure. We also provide Zach with a multivitamin (that is GFCF and dye free) and fish oil (Omega 3) supplement, although in all likelihood, because he eats well in the veggie and fruit department, he doesn't require. We also eat some cereals - (YEAH for Chex Rice Cereal for taking the malt out!!) that are fortified too.
What is the issue with gluten and casein? From what I have read, the theory is that some individuals are incapable of completely metabolizing gluten and casein. These proteins end up permeating the intestine wall (a condition referred to as leaky gut) and entering the body after reformatting into peptides which have opiate-like effects. Opiates basically jack an individual up as if drugged. There is no conclusive research at this time as to the efficacy of the diet, however, a lot of parents ancedotally report its benefits ranging from reduction of autistic symptoms to near recovery.
What has it done for Zach? I will not make any judgements yet about this diet, but this is what we have noticed:
1) He quit puking the week we put him on the diet.
2) He began saying a few single words and phrases after nearly 8 weeks of nearly nothing.
3) His eye contact went from almost none, to much better.
4) He began some pointing again.
5) He began interacting with family members he knew again on a regular basis (no more retreating to a corner)
6) He began interacting with family members he didn't know as well and laughing, making some eye contact, and allowing them to touch and hold him.
7) He began interacting with his SLP for the first time ever.
8) He began letting others engage him in play, and played with toys more like intended and less lining them up.
These observations are ones that I made, Steve made, my card-carrying-Republican mother made, my brother made, my neice, who babysat for us and is Special Ed certified, made, and our SLP made. I only wish during all the nuttiness of this summer that I had videotaped Zach more. I am going to make a concerted effort to document him more on tape from now on. I advise anyone out there who suspects there children to have an ASD to do the same.
We are going to attempt to add some things back in to Zach's diet to see if they make a difference at some point. However, if we see no change, I still will not be convinced that the diet did not help. Why? Because perhaps getting him off the stuff for a bit gave him the alloted time to heal and now he can process gluten and casein. Just a guess. So in other words, we may never know for sure if this helped Zach. But it hasn't hurt him, and most likely has offered him a healthier diet - certainly better than the average American diet.
What is the issue with gluten and casein? From what I have read, the theory is that some individuals are incapable of completely metabolizing gluten and casein. These proteins end up permeating the intestine wall (a condition referred to as leaky gut) and entering the body after reformatting into peptides which have opiate-like effects. Opiates basically jack an individual up as if drugged. There is no conclusive research at this time as to the efficacy of the diet, however, a lot of parents ancedotally report its benefits ranging from reduction of autistic symptoms to near recovery.
What has it done for Zach? I will not make any judgements yet about this diet, but this is what we have noticed:
1) He quit puking the week we put him on the diet.
2) He began saying a few single words and phrases after nearly 8 weeks of nearly nothing.
3) His eye contact went from almost none, to much better.
4) He began some pointing again.
5) He began interacting with family members he knew again on a regular basis (no more retreating to a corner)
6) He began interacting with family members he didn't know as well and laughing, making some eye contact, and allowing them to touch and hold him.
7) He began interacting with his SLP for the first time ever.
8) He began letting others engage him in play, and played with toys more like intended and less lining them up.
These observations are ones that I made, Steve made, my card-carrying-Republican mother made, my brother made, my neice, who babysat for us and is Special Ed certified, made, and our SLP made. I only wish during all the nuttiness of this summer that I had videotaped Zach more. I am going to make a concerted effort to document him more on tape from now on. I advise anyone out there who suspects there children to have an ASD to do the same.
We are going to attempt to add some things back in to Zach's diet to see if they make a difference at some point. However, if we see no change, I still will not be convinced that the diet did not help. Why? Because perhaps getting him off the stuff for a bit gave him the alloted time to heal and now he can process gluten and casein. Just a guess. So in other words, we may never know for sure if this helped Zach. But it hasn't hurt him, and most likely has offered him a healthier diet - certainly better than the average American diet.
Tuesday, January 6, 2009
Barfing twice a week is just not right, nor are bright red ears.
Beware: this may gross you out a bit.
Zach has had GI issues since he was 10 months old. Basically, his GI issues consisted of totally out of the blue, without warning, full barfing of all that was eaten within the last 12 hours. These puking incidents averaged twice a week for well over a year. I wrote down the food he was eating to see if there was a correlation between what he ate an his barfing. There was no obvious correlation - he drank milk, ate cheese and yogurt every day - but he only barfed on average, twice a week. Didn't have an obivious milk correlation. The pediatrician told me that some kids were just barfers. Anyone who witnessed one of Zach's barfing episodes knew these were pretty tremendous. He literally erupted. I never accepted the fact that some kids just barfed and had begun researching getting him in to a pediatric GI.
My mother-in-law pointed out that Zach's ears were very red sometimes. Sometimes it was just one ear - on the outside and not on the inside. It didn't seem to bother him. I brought him in to the pediatrician and there was no ear infection. Of course, the ears would never stay red for very long. Hmm.
So a Google search produced a vast array of information about red ears. We read that children with red ears commonly have food sensitivities. We also read that there were instances of parents with kids on the spectrum reported having red ears. We also read that those with celiac's may have the same symptom.
Puking, red ears, autistic symptoms, we're going to try the GFCF diet we decided.
With a little help from Linda, a registered dietitian, a bunch of books and websites, and good ol' Wegman's and NaturTyme - we were off. GFCF stands for gluten free and casein free. Gluten is a protein commonly found in grains such as wheat, barley, rye, and kamut. Say goodbye to most cereals, breads, pastas, crackers, chips. Casein is a dairy protein; there goes milk, cheese, yogurt, and ice cream. So what can you eat? Meat, fruit, vegetables. So - corn and rice are OK, chicken is OK, but not breaded with wheat flour, french fries OK, eggs are OK, and all the unprocessed fruits and veggies he likes.
Almost all procesed foods have some sort of gluten and casein in them. Aside from the obvious, ingredients like malt, modified food starch, and whey must also be avoided. Go read some labels and tell me how many times you find these - they are everywhere! We have to be careful with hotdogs and cold cuts - but have found brands that are safe - Hormel Natural meats are for the most part safe - I always still label check though. Applegate Farms are our source for hot dogs - and they have chicken, turkey, and beef ones so we are fairly lucky since Zach is so picky about eating meat, sometimes this is his only meat source.
So what are the replacements for milk? soy milk, rice milk, hemp milk, almond milk, hazelnut milk, coconut milk. Many of them are pretty good - but it took us a bit to find brands we thought tasted good. (I think 8th Continent soy milk tastes like playdoh for sure.) Wheat flour alternatives include potato flour, rice flour, almond flour cornmeal, buckwheat, quinoa flour, tapioca flour.
The diet may sound restrictive - but think of this - Zach can still eat a filet mignon, with baked potato, side salad and have a chocolate lava cake. He can also have chicken nuggets, french fries, and apple crisp for dessert. Or turkey, mashed potatoes, green beans, and pumpkin pie. How about fried pork hops with onions, a side of rice and squash, with peanut butter chocolate chip cookies for dessert. These are all viable options for him that we have prepared without gluten and casein. Just none of it is purchased - we must make it ourselves for the most part. It's not fast and it is not convenient. But most things in life that are worth it aren't.
Zach has had GI issues since he was 10 months old. Basically, his GI issues consisted of totally out of the blue, without warning, full barfing of all that was eaten within the last 12 hours. These puking incidents averaged twice a week for well over a year. I wrote down the food he was eating to see if there was a correlation between what he ate an his barfing. There was no obvious correlation - he drank milk, ate cheese and yogurt every day - but he only barfed on average, twice a week. Didn't have an obivious milk correlation. The pediatrician told me that some kids were just barfers. Anyone who witnessed one of Zach's barfing episodes knew these were pretty tremendous. He literally erupted. I never accepted the fact that some kids just barfed and had begun researching getting him in to a pediatric GI.
My mother-in-law pointed out that Zach's ears were very red sometimes. Sometimes it was just one ear - on the outside and not on the inside. It didn't seem to bother him. I brought him in to the pediatrician and there was no ear infection. Of course, the ears would never stay red for very long. Hmm.
So a Google search produced a vast array of information about red ears. We read that children with red ears commonly have food sensitivities. We also read that there were instances of parents with kids on the spectrum reported having red ears. We also read that those with celiac's may have the same symptom.
Puking, red ears, autistic symptoms, we're going to try the GFCF diet we decided.
With a little help from Linda, a registered dietitian, a bunch of books and websites, and good ol' Wegman's and NaturTyme - we were off. GFCF stands for gluten free and casein free. Gluten is a protein commonly found in grains such as wheat, barley, rye, and kamut. Say goodbye to most cereals, breads, pastas, crackers, chips. Casein is a dairy protein; there goes milk, cheese, yogurt, and ice cream. So what can you eat? Meat, fruit, vegetables. So - corn and rice are OK, chicken is OK, but not breaded with wheat flour, french fries OK, eggs are OK, and all the unprocessed fruits and veggies he likes.
Almost all procesed foods have some sort of gluten and casein in them. Aside from the obvious, ingredients like malt, modified food starch, and whey must also be avoided. Go read some labels and tell me how many times you find these - they are everywhere! We have to be careful with hotdogs and cold cuts - but have found brands that are safe - Hormel Natural meats are for the most part safe - I always still label check though. Applegate Farms are our source for hot dogs - and they have chicken, turkey, and beef ones so we are fairly lucky since Zach is so picky about eating meat, sometimes this is his only meat source.
So what are the replacements for milk? soy milk, rice milk, hemp milk, almond milk, hazelnut milk, coconut milk. Many of them are pretty good - but it took us a bit to find brands we thought tasted good. (I think 8th Continent soy milk tastes like playdoh for sure.) Wheat flour alternatives include potato flour, rice flour, almond flour cornmeal, buckwheat, quinoa flour, tapioca flour.
The diet may sound restrictive - but think of this - Zach can still eat a filet mignon, with baked potato, side salad and have a chocolate lava cake. He can also have chicken nuggets, french fries, and apple crisp for dessert. Or turkey, mashed potatoes, green beans, and pumpkin pie. How about fried pork hops with onions, a side of rice and squash, with peanut butter chocolate chip cookies for dessert. These are all viable options for him that we have prepared without gluten and casein. Just none of it is purchased - we must make it ourselves for the most part. It's not fast and it is not convenient. But most things in life that are worth it aren't.
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