Okay, This Is the First Time I've Started a Thread About Something

[GeorgiaPeach]

Okay, this is the first time I've started a thread about something totally not PC but the description says for things not covered anywhere else and this applies. There was a thread a few days ago about Christian cheffers. I need help from Christian cheffers that have children with autism...or know someone that does.

My sister has two little boys, 3 and 5, both have been diagnosed with autism. She has devoted her life to studying everything she can get her hands on regarding autism (she is well known in her area as an advocate for children with special needs), pays out of pocket for in home therapy, has them in a special school, takes them to speech-physical-occupational therapy, etc.

This past weekend was a breaking point for her, her 3 yr old had spit at her, scratched her (drew blood), broke her bead bracelet, then threw himself on the ground screaming. While she stood there trying to catch her breath, a lady walked up and told her that if she couldn't control her child, maybe she should let someone else raise him.

She started sobbing as she told me. It is breaking my heart. As much as I love her and the boys and have spent lots of time with them, I can never fully understand the struggles she is facing on a daily basis. I need to find a Christian woman that has walked this same road so that I can find ways to encourage her.

This is the only place I know that I can reach alot of women and hopefully find someone to help. Thank you!! If you can't help but can say a prayer, her name is Lori.

God bless, Lisa

 

[PampMomof3]

Hi Lisa,

I am so sorry to hear that your nephew has autism. I know it can be a devastating situation depending on the severity of the child. Fortunately, I don't walk in those shoes but I worked at a chiropractors office and he had A LOT of children who came in for care. I know it sounds really strange that you would take a child to a chiropractor but let me tell you my children have gone to him ever since they were born.

Have the doctors told her how he got the autism? Was it vaccine-induced? YOu don't have to answer those questions if you don't want to.

In my town there is a excellent autism doctor who works with my chiro (I'm not sure how much anymore b/c I haven't worked there in 3 years ) and I can find his name and number if you need it. I know that this doctor has traveled to Ireland and various other countries trying to be an advocate for autism.

Again, please let me know if I can help. Maybe there is a pediatric chiropractor in your area that can help.

 

[Jennie4PC]

my husband has a cousin who has autism and she did some shots called secretin and they felt it helped her alot, they also did cranial sacral manipulation (with the skull) his aunt also wrote a book called Far Away Child, I dont know if it is in a barnes and noble but I do know it is at a book store called seagull book, it talks about some struggles that she had and the way people even looked at her and the way she felt alone with the problem. It is a really good book. Just to let you know she is a LDS author

 

[GeorgiaPeach]

There isn't a clear cut answer to what causes autism. Lori strongly believes that vaccines are involved. It's not the vaccine (MMR) itself, it's the combination of the three. It's better to break the shot up into 3 separate shots. The 5 yr old is in the process of getting his shots for school. He is getting 5 shots on different days so that there isn't a chance of reaction.

Going to a chiropractor was talked about at one time. I'll have to see what she learned about it.

She actually has a great team of doctors and specialists but you can't really call one of them after you've had a bad day and expect them to understand.

 

[cmdtrgd]

Has she ever gotten counseling or group therapy for HER support?

 

[Grandmarita]

There has been a lot of news about a young man in the Rochester, NY area,
named Jason McElwain. If you do a search online, you can read some of the
excitement over his opportunity to play basketball in the final four minutes of
his high school's Senior night. He had been the Team Manager since his Freshman year, and practiced all season with the team. It is a heart warming story and has been an encouragement to many parents of children with autism. He has had scores of movie offers, and lots more.

 

[PampMomof3]

There has been a lot of news about a young man in the Rochester, NY area,
named Jason McElwain. If you do a search online, you can read some of the
excitement over his opportunity to play basketball in the final four minutes of
his high school's Senior night. He had been the Team Manager since his Freshman year, and practiced all season with the team. It is a heart warming story and has been an encouragement to many parents of children with autism. He has had scores of movie offers, and lots more.[/QUOTE

I did hear about that story! I think I actually read it in my PEOPLE magazine! Lisa, please keep us posted. I will pray for Lori.

 

[GeorgiaPeach]

There has been a lot of news about a young man in the Rochester, NY area,
named Jason McElwain. If you do a search online, you can read some of the
excitement over his opportunity to play basketball in the final four minutes of
his high school's Senior night. He had been the Team Manager since his Freshman year, and practiced all season with the team. It is a heart warming story and has been an encouragement to many parents of children with autism. He has had scores of movie offers, and lots more.

I actually saw the news story on TV one night. Very touching. Stories like that do give you hope but the spectrum of autism is so wide....ranging from mild to severe. While one child with autism can function moderately well in society, others cannot. There seems to be no rhyme or reason to this and that is what can be so frustrating. What works for one family might not work for another. Thank you for your prayers.

 

[pamperedbecky]

I actually saw the news story on TV one night. Very touching. Stories like that do give you hope but the spectrum of autism is so wide....ranging from mild to severe. While one child with autism can function moderately well in society, others cannot. There seems to be no rhyme or reason to this and that is what can be so frustrating. What works for one family might not work for another. Thank you for your prayers.

I was fascinated by that story too. I used to work one-on-one with an Autistic girl when I was in grad school (the family was very well-off and had the means to employ a whole team of behavioral therapists who provided full time therapy to their daughter---that's kind of frustrating that those types of interventions are much easier to come by with families with lots of money) and have loved soaking up all information about Autism I can. I majored in psychology and have a masters in counseling psych, so I've come across this topic quite a bit. I've had various jobs where I've worked with autistic kids and all of them have such different characteristics, it seems no two are the same. I agree....there are SO many levels of functionality with Autistic kids so there's such a wide range of what might work for one kid, but not for another.

Lisa, I totally feel for your sister and will keep her in my thoughts and prayers. I can't imagine what a challenge she is facing and it made my blood boil to hear how she has to deal with peoples' comments and ignorance. Where does she live? I'm sure she appreciates your support and hopefully she belongs to a local support/education group for parents of kids with autism.

 

[pamperedcindy]

Lisa, I'm a Christian Cheffer who has a 9 year old son with several learning disabilities. He has ADHD, Dyslexia, Auditor Processing and recently they are testing him for Aysperger's which is a form of Autism. And from my own experences, I know how hard it is. The people in the stores and resturant don't understand my son looks like a normal 9 year old, but acts like a 4 year old. People don't understand anybody with learning disabilities, because they can't see a disability like if one was in a wheel chair or braces. They look at me all the time and talk about my parenting skills, but unless they have walked a block even in my shoes they will not understand.

If your sister would like an e-mail buddy or someone to talk to either you or her can e-mail me and let me know. [email protected]

Thanks and God Bless,
Cindy Munesato
Future Director

 

[jessica_momof6]

Hi Lisa. My son has aspergers. While not quite as severe-it is on the autism spectrum and is hard to deal with.
I'd be more than happy to talk to her if she would like some additional support.

The thing to remember in supporting her is that his behavior is out of his control. he is not consciously making a decision to be the way he is. so understanding that, and not treating her like that other woman did (with the whole "If you can't control his behavior" line of bull) is a huge step. showing that you understand his behavior is not her fault, is not because of her lack of discipline or controlling him...that is important.
Kids with autistic spectrum disorders get misunderstood so much because people think you can just make them change their behavior. you can't. that was very hard for me with working on getting Noah diagnosed...people would look at him and he appears very "normal" and then they would snap at him because of the way he behaved and did not listen...when truly, it was just beyond him to understand. there are/were days I would just sit here and cry because I could not "make him" behave....and then we got the diagnosis and I understood why.

has she thought of respite care? someone will come into the home and work with the kids, take them out, do things and give her a break. they are specialized and experienced in disorders such as these.

she needs to remember that this is not her fault. she just needs to continue to love her kids and forget what people have to say...and make sure that if someone says something like that to her again-she needs to say something back.

((hug))

 

[nascarcooker]

Hello,
I too,have a son who is autistic. He is 21 years old now and is at a 4-5 year old age level. He is on five meds daily. It's hard and people don't understand. He will always live with me and my community has been very excepting of him and he helps out our local train station and fire department. We have good days and bad days. I love him very much and it takes a lot of patience. You can give her my email address because it is nice to have someone to talk too who has been there. She can email me at [email protected]. My son wasn't diagnosed until he was 15. Took them a long time.
Sally Wilhite
Future Director

 

[DZmom]

has she thought of respite care? someone will come into the home and work with the kids, take them out, do things and give her a break. they are specialized and experienced in disorders such as these.

Lisa, While both my children are fine, during college I worked for a Residential Mental Health facility that took in the most severe cases. Several of the individuals I took care of on a daily basis had autism. Most of whom had to be physically restrained by a caregiver on daily to stop them from hurting themselves and all those around them. I had to restrain one of my patients in WalMart once. I had several people make the same sort of beligerent, rude and obnoxious remarks that your sister had to suffer through.

Understanding and supporting someone that takes care of autistic patients is very difficult. My husband always made certain that I'd leave work at work, no matter how bad the day had been. Your sister is a TRUE HERO, because while I was able to leave it all at work, she must press on throughout the day and night!

Remember that laughter is the best medicine and try to get her to focus a bit of time on rejuvenating herself. Whether it's a day out while a family member stays at home with the boys or Respite care for a few hours, she could probably use the time to just veg!

I'll be praying for her. God Bless!

 

[GeorgiaPeach]

Thank you!Thank you all so much for your words of encouragement and contacts to share with Lori. I knew that this was the place to come if I needed some help

For those that asked....My sister lives in Florida. I moved to Georgia 2 years ago (husband is a pastor and we accepted a church here). I didn't want to leave Kentucky but when I realized I would only be 4 hours away from her instead of 13...that made the move easier. Last year when the 3 yr old was diagnosed I realized that God gave me the perfect job with PC, I was able to work my schedule around trips to FL. So I began going down once a month for about 3 days...to cook, clean, cry with her, baby sit...whatever was needed. It was such a blessing to know that I didn't have to clear time off with a boss.

I am her respite care if she needs a weekend away, she feels more comfortable knowing family is there to keep the boys and I can feel like I am able to make a small difference. She does have a great baby sitter that can give her small chunks of time to run errands, etc.

 

[lizcooks4u]

re: AutismI remember hearing about that. I'm thinking they're making a movie about it or already had. It was very inspirational. I read up on items like this as I'm a Hospital Medical Records Coder. RHIT, CCS and new/old items in Medicine is always interesting and nice to hear.

I'll definately keep your family in my prayers and sure hope your sister gets what she needs as do the kids.

Good Luck and God Bless.

Liz

There has been a lot of news about a young man in the Rochester, NY area,
named Jason McElwain. If you do a search online, you can read some of the
excitement over his opportunity to play basketball in the final four minutes of
his high school's Senior night. He had been the Team Manager since his Freshman year, and practiced all season with the team. It is a heart warming story and has been an encouragement to many parents of children with autism. He has had scores of movie offers, and lots more.

 

[lizcooks4u]

Hello,
I too,have a son who is autistic. He is 21 years old now and is at a 4-5 year old age level. He is on five meds daily. It's hard and people don't understand. He will always live with me and my community has been very excepting of him and he helps out our local train station and fire department. We have good days and bad days. I love him very much and it takes a lot of patience. You can give her my email address because it is nice to have someone to talk too who has been there. She can email me at [email protected]. My son wasn't diagnosed until he was 15. Took them a long time.
Sally Wilhite
Future Director

Wow, It took so long for your son to get diagnosed. At least you were there for him and it's awful what others say such as the rude comments you've all heard. It's like they have nothing better to do than to jump into someone else's business that they have no idea about. Good Luck to all of you and I"ll keep everyone in my prayers.
Liz

 

[lizcooks4u]

Lisa, I'm a Christian Cheffer who has a 9 year old son with several learning disabilities. He has ADHD, Dyslexia, Auditor Processing and recently they are testing him for Aysperger's which is a form of Autism. And from my own experences, I know how hard it is. The people in the stores and resturant don't understand my son looks like a normal 9 year old, but acts like a 4 year old. People don't understand anybody with learning disabilities, because they can't see a disability like if one was in a wheel chair or braces. They look at me all the time and talk about my parenting skills, but unless they have walked a block even in my shoes they will not understand.

If your sister would like an e-mail buddy or someone to talk to either you or her can e-mail me and let me know. [email protected]

Thanks and God Bless,
Cindy Munesato
Future Director

I totally agree. I was in a horrible car accident almost 25 yrs ago. To look at me I look fine, but it took time for me to get back to normal or in control of myself. People look at the outside appearances and have no idea what's going on in the inside. My worst thing is I REMEMBER how I was before my car accident (and liked myself that way better) than how I am now. I stand up for myself and others more now and if something is said which I don't like I'm very vocal. Luckily for me I don't have physical handicaps, but sometimes that tends to make it easier for others to try to understand. I had massive head injuries and no rehab. The hospital had said to my parents they wouldn't life flight me to a better hospital as I wasn't going to make it thru the night. Not only did I prove them wrong by living, but I didn't have rehab and didn't take classes a special way, and graduated with an Associate's Degree in a very tough field. I"m my hardest critic though when It comes to work.

It really hurts me when people are so rude/etc towards people and their comments even worse. Often times things are said in front of those who they think don't understand and do understand and that hurts too. I commend all of you; and really admire those raising your very special children.
Keep up the Great work and I'm always here if anyone needs to chat. [email protected]
Liz

 

[mary k]

AutismI'm been hired on at our local school full time as a aide part of the time working with a boy that has Autism .
Went to a workshop on this in June and walked away very upset because both my boys have ninety percent of the symptons. Could nver figure out what was going on with them and they don't have a severe case but enough to concern me.
The oldest has had problems for a long time and people do not understand people with children who have these problems. Its a daily struggle.
The lady that gave the workshop did confirm that the three in one shot is not good to give your child she told me they need.to be seperated.
My prayers are with your family and thank God she has a loving sister like you.

 

[janel kelly]

How do you get the MMR shot in 3 different shots. My 2 year old had the shot and is fine. I have a 4 month olds that will need it in the near future. Should I just ask to have it in 3 separate shots just to be safe. Will they do that? Would they have to give him one shot on 3 separate days or 3 shots in one day? I have heard of the controversy behind shots and autism so I'm always nervous when it comes to my kids getting shots, but yet I know they need to be vaccinated. I feel for your sister. Its hard enough raising 2 boys so close in age but for them to both have autism must take alot of strength and patience.

 

[PampMomof3]

I have done A LOT of research myself (of course, my husband too ) and have chosen to NOT have our children vaccinated. Our first child (who's now almost 6) have a severe reaction after he was given his 9 month old shots. My husband and I got into big discussions because we wondered if we'd be doing the right thing for our children. We called the doctor about it and we now have a medical exemption for all 3 of our kids. They said that if one child has a reaction then most likely, they all will. It is scary to know that our children do not have vaccinations but we do have faith in God and know that the decision that we have made for our children is the best one.

 

[mary k]

AutismOn T.V they had a program on about England and they said that they do not make the kids take immunizations any more and found ou that the Autism and other related problems dropped about fifty percent.
I would ask your childrens doctor about giving them seperate.

 

[cmdtrgd]

Just a side note to this thread...
I run drama day camps during Spring Break and Summer Break through our city Parks and Rec department. A few years ago a mother signed up her 10 year old child. We have a confidential emergency information form where you must list if your child could need to take meds and any allergies, etc. It is also the place where disabilities of any kind should be noted. Also, we have a budget to provide group or one-on-one aids if necessary. The mother did not notate that her child had asbergers nor did she tell us. There were lots of problems with him blurting out at any time about pretty much anything. I felt bad that we kept having to take him out of class and talk to him. I could tell he couldn't help it - oh, did I say I am a certified teacher and have been minimialy trained in special needs? He was miserable and the kids were making fun of him because they didn't understand.
Finally, on the third day of Spring Break camp I asked her if there was a catch phrase they used with the child in order to get his attention and if there was anything I could do at camp to support what they do at home. She then told me that he had asbergers and the phrase they used. It worked wonders! So, after three miserable days for him and the campers and teachers, I was able to explain to the camp that he had a situation in his life and couldn't control a lot of the things he said and did. I pretty much said that verbatim. The kids were fabulous about it and almost "protected" him. The staff was able to relax and use the catch phrase. She also said he was coming home frustrated (no...really?) and was only going to bring him in the afternoon for play practice. So after all that, he wasn't even able to participate like he should have.
Why am I posting this here? There should be good programs in your are that can help you with the child - even to get him/her out of the house for a few hours a week doing something positive while you get a break. And, PLEASE, let the people you are sending your child to know about the disability and how to deal with it. I'm not saying that you won't get burned, but my situation could have been so much more positive even if we had just known what to say to get his attention. And, we could have provided an aide free of charge for him. It just breaks my heart when people judge without knowing what is going on. But, how do you expect people to know if you don't tell them...I mean, people who work with you and your child.Hopefully this all makes sense to somebody!

 

[GeorgiaPeach]

On T.V they had a program on about England and they said that they do not make the kids take immunizations any more and found ou that the Autism and other related problems dropped about fifty percent.
I would ask your childrens doctor about giving them seperate.

After all my sister (two autistic children) has studied about a possible link between autism and vaccines she talked to her neighbor (a nurse) about it when it was time to have her (the neighbor) child's shots. The neighbor's pediatrician actually laughed at her and told her she needed to get a life and quit worrying about every little thing. My thought....get a life?....GET A NEW DOCTOR!!

 

[Jennie4PC]

I worked for a dr that delt with autism and he believes it is from the mercury in the shots they are starting to take them out of the vaccines but I refuse to do the shots if they even have a slight runny nose plus I also wait till they are a little older for the MMR shot

 

[swhitton]

Lisa -

My middle son also has autism, not as extreme as your sister's children, but it is hard to emotionally deal with many days. One thing I am very thankful for is that our school district has a parent support group for parents of children with autistism and autism spectrum disorders. Many meetings it is just a time for us parents to vent and get suggestions on how to handle situations from other parents who have been there. It does help.

Logically, as a parent we know that autism is not our fault, but you never lose the guilt. I live at the beach and there are many evenings I find myself there crying and screaming just so that I can face the next day with my children with less guilt and be the best mom I can be. My best suggestion I can give you is to just be there for her. Let her cry and vent her fustrations and guilt with you and know she is not angry with you, but at the situation. See if there is a support group in the area made up of other parents and if there is encourage her to go and offer to watch the children for her so that she can go. The best thing for her is to know she is not alone and sometimes the ideas from other parents who have been there/done that really do come in handy.

Please let me know if I can help you at all and know your family will be in my prayers,
Sharon Whitton
[email protected]

 

[jessica_momof6]

Lisa -

Logically, as a parent we know that autism is not our fault, but you never lose the guilt. I live at the beach and there are many evenings I find myself there crying and screaming just so that I can face the next day with my children with less guilt and be the best mom I can be. My best suggestion I can give you is to just be there for her. Let her cry and vent her fustrations and guilt with you and know she is not angry with you, but at the situation.

I agree so much with this.

My head understands that I did not do this to my son. I did not cause him to have aspergers. I did not cause him to have a stroke in-utero that would cause the processes in his brain to not connect correctly. But try telling that to my heart.

There are so many days I just cry and beat myself up over the way I respond to him sometimes. I get frustrated with how he acts and it is so hard to remember that he is not choosing to be this way. so sometimes I snap at him-and I can see the lack of comprehension in his eyes, and then I just can't stand who I am at that moment.
it is just so hard to deal with.

 

[lizcooks4u]

Thank you all so much for your words of encouragement and contacts to share with Lori. I knew that this was the place to come if I needed some help

For those that asked....My sister lives in Florida. I moved to Georgia 2 years ago (husband is a pastor and we accepted a church here). I didn't want to leave Kentucky but when I realized I would only be 4 hours away from her instead of 13...that made the move easier. Last year when the 3 yr old was diagnosed I realized that God gave me the perfect job with PC, I was able to work my schedule around trips to FL. So I began going down once a month for about 3 days...to cook, clean, cry with her, baby sit...whatever was needed. It was such a blessing to know that I didn't have to clear time off with a boss.

I am her respite care if she needs a weekend away, she feels more comfortable knowing family is there to keep the boys and I can feel like I am able to make a small difference. She does have a great baby sitter that can give her small chunks of time to run errands, etc.

I've never watch the Espy awards (Sports) and the boy everyone mentioned with Autism who played in the last game won an Espy tonight. He went up against Kobe Bryant, Dakota D? her story was sweet too, a golfer who wanted her terminally ill mother to watch her play in the LPGA and that happened to and the daughter did great, but it was sooo neat to see the boy with Autism win. Not only the award but the game he played in he got 6 three point shots !!! AWESOME!!

 

[GeorgiaPeach]

How do you get the MMR shot in 3 different shots. My 2 year old had the shot and is fine. I have a 4 month olds that will need it in the near future. Should I just ask to have it in 3 separate shots just to be safe. Will they do that? Would they have to give him one shot on 3 separate days or 3 shots in one day? I have heard of the controversy behind shots and autism so I'm always nervous when it comes to my kids getting shots, but yet I know they need to be vaccinated. I feel for your sister. Its hard enough raising 2 boys so close in age but for them to both have autism must take alot of strength and patience.

Janel,

Sorry, I just saw this question. Yes, you can ask to get the MMR shot separated into 3 different shots. They will be given on 3 different days. Not all children will have a reaction to the shot been given as one but with the new studies being done and the questions being raised, I would err on the side of caution. Some doctors will not break the shot up and might give you a hard time. I say that it is your child and you need to do what you feel is best. My sister's pediatrician won't (or can't...it's a small practice and I think they don't stock them that way) break the shots down into separate shots so she goes to a special DAN (Defeat Autism Now) doctor that will do it. Yes, she pays 3 co-pays but in the long run, it's a small price to pay for the peace of mind.

 

[jessica_momof6]

Janel,

Some doctors will not break the shot up and might give you a hard time.

My sister's pediatrician won't (or can't...it's a small practice and I think they don't stock them that way) break the shots down into separate shots so she goes to a special DAN (Defeat Autism Now) doctor that will do it. Yes, she pays 3 co-pays but in the long run, it's a small price to pay for the peace of mind.

it isn't so much that they can't break up the shot...but a lot of doctors offices do not even have it available to them as seperate shots. they can't take the whole MMR shot and break it down-they have to get it before it is combined-and most places just don't/won't offer it. I haven't heard of it available anywhere I live-and it is a big city.

(and Lisa, I am sure you already know that information-I was just clarifying for others)

 

[janel kelly]

Thats what I was thinking- that they may not even have them available as 3 separate shots. We are in the military so we go to the clinic on base. I have heard of the controversy between autism and vaccines and I talked to my son's perdiatrician and she said they had heard about it but that studies have been done that say that there is not lin bewteen vaccines and autism or at least thats what she told me. So do they think that some kids are more genetically predisposed to getting autism and the vaccines more or less push the autism along or could it happen to anyone?