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Old 01-24-2010, 05:46 PM   #2041
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Susan: what a wonderful post. Sometimes hope is all we've got and it really helps us to rejoice for all the "little things"...sometimes the big picture is too big.
I checked out your blog and you wrote: "Please share a bit of good news about your child/patient/student, even if you have to think hard about it. Because I really believe what gets us through this with our sanity intact is looking for the good news with an eagle eye and always keeping it in mind. It's the knot in the end of our rope when we need it to be!" <-- love that line!
Something I can share is that my son has been bowing his head presenting his forehead to receive kisses lately. Over the last couple of days he is presenting his cheek and I've been kissing the heck out it...God, I love that kid
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Old 01-24-2010, 06:09 PM   #2042
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I'm a new stamper to this forum and mother to a 16 yr old with high functioning autism (PDD).

It was a rough go for a long while, but I am truly blessed. My son went to a private school for kids with autism until last year. He is now mainstreamed at "regular" High School, in "regular" classes AND on honor roll.

He is bright, funny and has lots of friends. This same boy, 8 years ago, spoke to no one, did not respond in class, and they couldn't even test him because he would just sulk and hide.

The teachers as his private school are angels. They knew their stuff and knew how to reach him.

He is such an easy child now. I see my friends with their "normal" teenagers struggling now through attitude problems, and some worse, drugs.

My son enters his junior year next year with aspirations on becoming a chef.

It took many years of adjusting my expectations. In the beginning, I viewed it as a loss of sorts. But I soon came to understand I had some things to enjoy with my son that other people with "normal" children would never experience. Small things, that others take for granted, became huge celebrations in our home. Like learning to tie his shoes, at age 12.

It is true: A good teacher or aid is invaluable.

Hang in there people! There is light at the end of the tunnel.

One of the things that helped me most when my son was first diagnosed was this article written long ago. I hope it helps someone else.


Quote:

Welcome to Holland
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Emily Perl Kingsley 1987

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Old 01-24-2010, 06:15 PM   #2043
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Quote:
Originally Posted by Tamburasi View Post
Susan: what a wonderful post. Sometimes hope is all we've got and it really helps us to rejoice for all the "little things"...sometimes the big picture is too big.
I checked out your blog and you wrote: "Please share a bit of good news about your child/patient/student, even if you have to think hard about it. Because I really believe what gets us through this with our sanity intact is looking for the good news with an eagle eye and always keeping it in mind. It's the knot in the end of our rope when we need it to be!" <-- love that line!
Something I can share is that my son has been bowing his head presenting his forehead to receive kisses lately. Over the last couple of days he is presenting his cheek and I've been kissing the heck out it...God, I love that kid
YES! Those kisses are WONDERFUL!!!
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Old 01-24-2010, 06:19 PM   #2044
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Welcome, Bethshaya! Thanks so much for sharing your son's story. The Welcome to Holland story is so true and really helped me early on, too. I'm enjoying Holland now, in more ways than I ever thought possible.

Blessings,
Susan
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Old 01-25-2010, 07:51 AM   #2045
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This is wonderful to hear. I'm very happy for you, your son, and your family!

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Originally Posted by LateBlossom View Post
For those of you dealing with small children on the spectrum, I have a very happy report on my 7 year old, who was diagnosed 3.5 years ago. Since then, he's had private PT/OT/ST through our children's hospital and special education services with PT/OT/ST at school, too. When he was in preschool and kindergarten, he attended public school as well as a typical church-based preschool with AWESOME teachers who totally "got" him. This way, he essentially had all-day school most days of the week. This year, he started first grade with half-day in a TEACCH classroom (autism only) and half-day in an inclusion class.

It's all paying off. I am weepy with joy right now, and I truly wish I'd had a crystal ball 3.5 years ago to be able to SEE, really SEE, how it was all working. We get so caught in the day to day of dealing with autism, the self-doubt, the "am I doing enough/the right thing/too much?" questioning.

Jack isn't "recovered" by a long shot, and he's still got major challenges, but Oh. My. God. I finally really SEE it working, SEE my boy starting to plug into the world. You can read details on my blog HERE.

So if you're where I was 3.5 years ago, know that it will get better. Just keep at it, keep loving, and believe.
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Old 01-25-2010, 09:31 AM   #2046
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Susan - thanks for sharing the wonderful progress your son has made. You made me smile today

Bethshaya - thanks for sharing too! Your words were fabulous

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Old 01-25-2010, 05:55 PM   #2047
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Thanks for the encouraging words, Susan! I couldn't agree more! After our 3 years of coaching-our-butts-off for our son, we are definitely noticing many of his 'quirks' lessening. My husband and I totally believe that B will learn to adapt to life with autism!
Love to hear your encouraging words!!!
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Old 01-26-2010, 05:49 AM   #2048
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Small success story! My son usually starts crying as soon as we get close to his school. I've been trying to help him by showing him pictures of who he will be seeing and by singing songs about his teachers and classmates. Tuesdays are one of the days when his OT is there. He was fussy when we got there, but after I took his coat off, he saw Cathy (OT) across the hallway in another room. He looked at me, SMILED, and ran across the hallway into the other room and held his arms up to her to be picked up! OMG! It was so precious. Cathy picked him up immediately, gave him a big hug, and held him and he let her. I've never seen so many teachers, aides, and moms teary-eyed all at once (at least 6 of us!) I'll never forget it! He also let me leave without crying (and he usually cries until he throws up!). PRICELESS!
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Old 01-26-2010, 10:56 AM   #2049
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Hooray! You made me teary-eyed too when I read your wonderful story

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Old 01-27-2010, 11:40 AM   #2050
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My brother is 40 and has Asperger's. Along with this, he has ADHD, anxiety, depression, and obsessive compulsive disorder. All of which have gotten worse as he's gotten older.

Right now we are struggling to get him a place of his own, so he can start becoming independent. To his own detriment, my mother has looked after him for these 40 years and has done everything for him (was easier to do this than argue with him at the time), but now we see it really did him no good. I am terrified that my parents will pass on and he will have no clue how to look after himself, and that I will be left responsible for him. I have stressed over and over to both my parents and my brother that I think he needs to learn to be independent. (and I do believe he's capable).

He is very intelligent (is a Cliff Claven for information/facts) and has a memory like an elephant. But people/social skills are one of his biggest barriers, as well as his obsessive compulsive disorder (hoarding/collecting unwanted mechanical items and newspapers are the biggest two). His ADHD has made things difficult as well, as he has trouble focusing on things.

He's had problems with coping with stress and taking his medication properly and has been in the hospital twice this year in psychiatric wards as he became manic when he did not take his meds properly.

As of late, we are seeing how little resources there are in our area for single white adult males with mental health problems. My brother went through a very difficult time at Christmas, and the service he received throughout was very disappointing and disheartening. It was the worst Christmas we've ever had. But things are slowly getting better, he now has a community mental health worker and we are hoping to get him a Proctor as well. There are many many more services he needs but good luck getting them!! I've heard this said over and over in this thread "the squeaky wheel gets the grease".....sometimes my wheel's too flat to even try any more. But I know that's when I need to start looking after myself and to get rejuventated somehow.

This is just the tip of the iceberg. I could go on and on. But it's nice to know there are others out there going through the same things!
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Old 01-27-2010, 11:57 AM   #2051
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Wow, Jo-Anne! Sorry to hear your brother is having such difficulties. My son has similar diagnosis, but his dr advised us that with guidence, he could become independant. The dr advised us that there are many career fields that do well for his intelligence and social skill level. He just needs to work in an area that is more independant vs group. Oddly, this year, my son started a school that uses group projects as a major portion of the educational program. He is thriving! He is in 6th grade, and in this magnet program, they are totally integrated learning in streams. He is in a stream called "Bridges" and all subjects relate to Bridges in some way (even reading Bridge to Terabithia) The homeroom stays together all day, changing classes together other than those that take music then split off to those classes separate from the homeroom group. This is helping my son learn some social skills with a core group that stays with him all day. This core group changes every 12 weeks (when they change streams) We've been amazed at his progress.

Realizing that your brother is an adult, perhaps a way to help him develop some social skills in a group is to take a class?
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Old 01-28-2010, 02:20 AM   #2052
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I need advice from you all.
Our DS2 is 13 and he is our autistic child. Ds1 is 14.
Starting in kindergarten DS1 met 2 twins. They were friends all through grade school.
Of Course DS2 also spent alot of time with these 3 boys.
The twins always came over to play, skateboard, come to birthday parties and so on.

In junior high they of course met different groups of friends and only seldomly hung out.
We just found out that one of the twins committed suicide last weekend.
His family believes it was over a girl that broke up with him. He did not realize that at age 14 there are many girlfriends that will come and go.
DS2 is having a terrible time. He has experienced death of his uncle and grandparents but never a suicide and he is really struggling with this.
I have an appointment for his psychologist made but that is not until later next week.
Last night he went to bed and could not sleep and actually was crying which is good as he normally keeps everything inside of him.
But when we try to talk to him he does not want to talk at all about it.
I did get out of him that he feels "guilty" as they have not been hanging out much anymore.
I explained that they are at an age where friends will change but yet you always remember and still occasionally talk to your grade school friends.

DH and I did not want him to hear it from someone else or at school.
He is now in one of 'shut down' modes right now. I am not even going to try to send him to school today as I know I will end up picking him up anyway.
Does anyone have any advice?

Thank you
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Old 01-29-2010, 06:39 AM   #2053
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Originally Posted by meluvstampin View Post
I need advice from you all.
Our DS2 is 13 and he is our autistic child. Ds1 is 14.
Starting in kindergarten DS1 met 2 twins. They were friends all through grade school.
Of Course DS2 also spent alot of time with these 3 boys.
The twins always came over to play, skateboard, come to birthday parties and so on.

In junior high they of course met different groups of friends and only seldomly hung out.
We just found out that one of the twins committed suicide last weekend.
His family believes it was over a girl that broke up with him. He did not realize that at age 14 there are many girlfriends that will come and go.
DS2 is having a terrible time. He has experienced death of his uncle and grandparents but never a suicide and he is really struggling with this.
I have an appointment for his psychologist made but that is not until later next week.
Last night he went to bed and could not sleep and actually was crying which is good as he normally keeps everything inside of him.
But when we try to talk to him he does not want to talk at all about it.
I did get out of him that he feels "guilty" as they have not been hanging out much anymore.
I explained that they are at an age where friends will change but yet you always remember and still occasionally talk to your grade school friends.

DH and I did not want him to hear it from someone else or at school.
He is now in one of 'shut down' modes right now. I am not even going to try to send him to school today as I know I will end up picking him up anyway.
Does anyone have any advice?

Thank you
No advice, but my heart goes out to your family and the family of the boy. I think you are right to keep him home. Maybe he will be able or want to talk after he has some quiet time to process all that has happened. From some recent bad experiences at school and with a neighbor getting her kids taken from her by CPS, please keep reminding your son that he is in NO WAY responsible for what happened. Does he have a counselor at school that he works with or a therapist that he sees outside of school that could talk with him to help him process what he's feeling?

I hope today goes well for you and your son.
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Old 02-02-2010, 10:04 AM   #2054
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{{HUGS}} to Jo-Anne and Tina......

Check in, ladies, and let us know how things are going for you.

Took DS to two different birthday parties this weekend. Both had NT kids at them and DS did well with lots of noise and kids.

Our school district is offering 6 different classes to parents of special ed kids to help us navigate through IEP's, how to help our kids learn at home, and then one on stress management and coping skills for parents. Sign me up for that one!! It will be so nice to have other mommies in the room who feel the same way I do.....

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Old 02-02-2010, 11:46 AM   #2055
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Just checking in!

My brother is still at my mom's. So far they have been getting along. Mom says her house is a disaster, but she's willing to look past that for now in order to keep peace.

My mom got a call from the Canadian Mental Health Association (CMHA) where my brother has been assigned a Community Mental Health worker. They said there may be a potential room opening up at one of the local hotels in our small city that is used for low income rental units until people can get permanent housing.

It has a bed, fridge, and it's own bathroom (which apparently most of the other rooms don't have, you have to share a bathroom down the hall). So we would need to bring him a TV, see if he can bring in a microwave/hotplate/toaster oven, and he'd be set. He'd be downtown here where he'd be close to Income Assistance, CMHA, the employment office (where I happen to work ) and near the grocery stores and the bus route. It would be the ideal first baby step for him. We all still live here, so we can support him as he needs.

Now if it only comes true........

Please pray for us!!!! Wish us luck!!! Cross your fingers!!! Whatever it is that you do!
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Old 02-03-2010, 02:48 AM   #2056
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Hello everyone
Well DS2 went to see his psycholigist yesterday and his teacher is also a teen counselor for the charter schools. I did call her and told there are a few kids affected by this suicide in both schools. She didn't realize these kids knew this student. She has been talking to them. She and the teachers are also using this oppertunity to talk to all the kids in both schools about suicide and prevention.
So DS2 is doing much better. DS1 and DS2 made a scrapbook page in rememberence of him. The pulled out pictures I had when they were all playing and hanging out here at the house.
Thank you


joanned72 - that is good news for your brother. Hopefully it will all fall into place and he will adjust very well. years ago when my great grandmother became to where she could not do much for herself but refused to leave her house and go live with someone, we all took turns stopping in daily to give her her meds and to check on her. SHe had a TV she watches and listened to and she did OK. I know this alot different but just popping in daily for a bit giving meds is what made her OK to live in her house.
I think your brother will really benifit from this. You a blessing of a sister to push this along and get him to be independant.
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Old 02-03-2010, 11:24 AM   #2057
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Thanks, Tina and Jo-Anne, for the updates!

Jo-Anne: we will keep our fingers crossed that the living situation works out for your brother. As Tina mentions, since he would be that close to your work, maybe popping in each day will ensure he is OK. Your brother is lucky to have you!

Tina: Great idea about scrapping a page in memory of your DS's friend. Glad to hear that things are going OK.

And how about the news story last night about the inaccuracy of the 1998 study about autism and the MMR vaccine......

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Old 02-10-2010, 07:25 AM   #2058
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My brother has not been doing well. He was at our local Crisis Stabilization Unit (CSU) at the beginning of January (he's had 4 meltdowns since last April, but 3 of them being since Dec.18th). My mom agreed to take him in when he left CSU. Things were good the first two weeks, then within the last couple weeks, she said he wasn't sleeping much at night and he was being very confrontational.

My brother is a compulsive hoarder as I may have mentioned, and there were some boxes of his things my mom wanted him to try to go through, to toss some things/keep some things. WELL, when she came home from work on friday, he had made a big mess of her house. She freaked out, he freaked out (yelling). The cops ended up being called, but they wouldn't take him b/c he did not appear to be a physical threat to himself or my mom. For some reason, they gave him until 4pm the next day to clean up his mess. SO, my mom came to stay the night at my place.

SO, the next morning I had to take her back there to get a change of clothes, feed the poor cats who were hiding in her room (with no litter or water), and to get her meds. All the while my brother is screaming at us. SO I make him go outside as long as I can before he's forcing his way in again. THE HOUSE WAS A DISASTER AREA!! I will try to post pics. The yard with stuff smashed, the living room & the bathroom. He smashed up quite a few things. There is LOTS more and he did some pretty strange things, but it is too much to type. We've since cleaned up this mess & everything looks as it did before this all happened.

Off we go. Later that day, I got a call from the cops that they had my brother in custody. He apparently had taken things out of the house and into the front yard and was smashing everything with a sledgehammer. (and he had no shirt on). It's -20 degrees celsius here. The neighbour had ended up calling the cops. (I would have too if I saw that!!!) THank god she did.

So now he's back at CSU. We have no clue if he was acting like this because he took too many meds or not enough. We are wondering if maybe he has bi-polar disorder on top of the Asperger's ect., and that maybe the meds he has are not right for him. That, or else he has serious problems taking his meds right.

It has just been a roller coaster. And the mental health care he is getting has been very frustrating.

Good news out of all of this, is that we have found him a temporary room at one of our local hotels that is low rental for people waiting for housing. We also got a call from Housing that he will be switched to a more appropriate waiting list for housing that is for people with mental health issues. The housing has staff that can monitor the residents. YAY! Not sure how long he will be on the wait list there.

I just want his meds all sorted out. That seems to be the problem right now. Our family doctor has washed her hands of it, and won't prescribe any more meds. She is forcing CSU to act and get a psychiatrist on board. But then a psychiatrist went to meet my brother but was leery on prescribing anything because he doesn't know my brother's medical history. Well duh, 1) call our family doctor and find out, and 2) do a brand new assessment anyway! Maybe he needs a total overhaul of meds!!

I'm just so frustrated with it all.
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Old 02-10-2010, 07:28 AM   #2059
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I also failed to mention there was a jerry can of gas outside. (Apparently when my uncle popped in on him, it was in the house). When we had left after picking up my mom's meds & clothes, my brother said he was going to take "drastic" measures to clean up....wonder if that just meant smashing everything, or if he was going to light everythign up!?!?!
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Old 02-10-2010, 11:39 AM   #2060
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Jo-Anne, ((((hugs)))) honey. Big hugs.

Everyone, have you seen the new DSM5 proposed revision to the Autism diagnostic criteria? Check out this link for details. What do you think?
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Old 02-12-2010, 12:36 PM   #2061
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Oh Jo-Anne - my thoughts go out to you and your family. What a difficult thing to be dealing with......big hugs to you.

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Old 02-17-2010, 09:50 AM   #2062
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Any ideas on how to get liquid medication down my DS? He got a double ear infection last week (each ear) and trying to get liquid medication down him is impossible. He starts spitting the minute we approach him. I've tried a spoon, the eye dropper things and also the syringe things....

He had to get a shot in each leg of antibiotic just to kick start getting rid of the infection. He was running a 104 degree temperature - eeekk! We also had to use suppositories to help with the fever and pain. No liquid Tylenol for my little guy

So now we are wrestling him down each night for ear drops in each ear. We are going back to the pediatric ENT who did his ear tubes 5 years ago for a follow-up visit and to check his tonsils and adenoids. I'm hoping the ENT can get some kind of a hearing test done. The school district has tried 3 times in the last 16 months to no avail - complete uncooperation on DS's behalf.

Any advice or ideas that worked for you? DS is 6 years old.

Thanks!

Lorraine
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Old 02-17-2010, 10:32 AM   #2063
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Any ideas on how to get liquid medication down my DS? He got a double ear infection last week (each ear) and trying to get liquid medication down him is impossible. He starts spitting the minute we approach him. I've tried a spoon, the eye dropper things and also the syringe things....

Lorraine
Oh I know the exhaustion of trying to get liquid medicine into a noncompliant boy!!! It's such a production!! The few times we have had liquid medicine prescribed, I cringed when I was handed the prescription because I knew what we were in for!!

This is what finally worked for us: My son LOVES yogurt, so I bought Trix yogurt for him because it is really strong flavored. I measured the medicine and put it into a small dish and mixed just enough yogurt to help the medicine taste better. He also LOVES the tiny Baskin Robbins taster spoons, so I used that. I tell him he has only 4 spoons (or whatever the right amount is) and then he takes one spoonful at a time. We count down (only 3 more spoons!!)
When he is done, he gets to eat the rest of the cup of yogurt that does not have medicine in it or ice cream.

It was not always easy, but it did work for him. We did this when he was about 6 1/2 and needed an antibiotic. Sometimes he still resisted, and I found that if we sat on the couch and he watched tv, we could do a spoonful every 5 minutes or so. Just keep trying!!
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Old 02-17-2010, 11:56 AM   #2064
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Lorraine,

I wish I had some advice. The only thing that worked for my son (age 7) was threatening to take him to the doctor to get a shot of medicine since he wouldn't drink it. I felt horrible threatening him like that because he is beyond terrified of shots, but I was desperate by then. It got the tylenol in him and his fever came down.

HandcraftedHeart has a good idea!
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Old 02-17-2010, 01:19 PM   #2065
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Lorraine,

Can he do chewable Tylenol melt-aways? I like the idea of putting the medicine into something else like yogurt or a smoothie. I do think the kids antibiotics taste gross. They are waaay too sweet.

I bribe my kids with candy. I know that is soooooo bad, but they get to eat GFCF chocolate chips (like 5-10 or them) or m&ms when they drink their meds.

Also, I save all of the cups that come with Motrin and Tylenonl liquids and use them for antibiotics or any liquid meds the kids need. I think the consistency of using the same container each time helps since it's what they are used to.

My PDD son was 4 yrs old when we decided to get his tonsils out. He had already had his adenoids out and 2 rounds of tubes in his ears. I am really glad we had it done because he slept much better and had fewer ear infections. However, I will warn you that the aftermath of the tonsil surgery was just as you described. We fought and fought to get the pain meds into our son. He ended up in the hospital because of dehydration. He wouldn't take the pain meds so his throat was killing him. Then he wouldn't eat or drink anything either. Anyway, suppositories and IV drip really helped and we were on our way.

As for the hearing test, I would not rely on the school to get it done with accurate results. I would go to a professional audiologist. They have the facilities and know-how to do an accurate test. With the audiologists I have been to with my kids, they went into a sound proof room while the audiologist was behind a 2 way mirror in another room. When my PDD son was almost 2 yrs old, I held him in my lap. When he heard a sound coming from the right and looked that way, he got positive reinforcement from the nurse who had a puppet and the TV went on. He tolerated the headphones too. It was a small, quiet room with no distractions.

If you go to a big hospital or medical facility, insurance can cover these tests.

I hope that helps. I totally understand your frustration. I really think bribery is okay in this situation since he really, really needs those meds.

Oh, I just thought of something....what if you put the ear drops in while he is sound asleep????????
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Old 02-17-2010, 01:21 PM   #2066
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Sorry, one more thing....

Constant ear infections is a sign of milk allergy or intolerance. Are you milk free? My ENT poo-poo-ed me on this, but my research says otherwise.
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Old 02-18-2010, 11:22 AM   #2067
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Thank you, everyone, for the support and advice!!

I will try the cute Baskin Robbins spoons.

DS will only drink milk from a small carton, like the kind in some schools. He does like a piece of cheese every now and then. I will give that dairy-free idea some thought......

Our ENT appt is on St. Patty's Day so I'll let everyone know how that goes.

Hugs to all of you; I feel armed with some new ideas and I like that!

Lorraine
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Old 02-24-2010, 06:29 PM   #2068
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Hi Lorraine,

I feel your pain and frustration. I hope your son is feeling better. A warning- I have been told that I am a bit blunt and don't know how not to be, so here goes:

My ds6 is on the spectrum and completely refuses liquid meds. We have tried everything we could think of. He also can't swallow pills so that presents a problem as well. I would try the ear drops when he is sound asleep if this is possible.
Also, a little peace of mind if this helps you. Most children will recover from ear infections without the use of antibiotics, it just takes a day or two longer, so they are not always necessary.
I agree with previous posts to try a dairy free diet despite anything your pediatrician may tell you. Humans do not need cows milk (I know this is a big controversy, but I have done tons of research).
We have been dairy free for 2 years and have had NO ear infections and no phantom fevers, and have only had 2 minor colds.
As for the medication, our homeopath advised us not to use tylenol, only use motrin. Tylenol can actually destroy glutathione that the body needs for proper immune function and detoxification.
Hope I haven't offended anyone!

-Nichole
A few resources in case you are interested. www.tacanow.org
www.milksucks.com
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Old 02-25-2010, 03:17 AM   #2069
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Nichole,
Thanks for the milksucks.com link. Never saw that before. Very interesting! I am always concerned that my kids are losing calcium and will suffer bone loss later in life because of the lack of milk, but maybe they'll be okay after all. Fingers crossed! LOL.
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Old 02-25-2010, 03:17 AM   #2070
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scrapinker and everyone else,

Be very, very careful with motrin. I used to dose my kids with it and now do not. Motrin (and generic ibuprofen) are associated with gastrointestinal bleeding. Taking it at the appopriate dosage from the bottle WITH FOOD is very important, and do not over-dose or take more often than allowed by instructions on the bottle. I developed gastric ulcers and now have chronic gastritis JUST from taking the prescription dose for joint pain for about three months. Now, I have to take prilosec daily and really notice if I don't.

The surgeon I saw for another issue said he sees more patients every week for gastrointestinal bleeding associated with motrin than all other drug side-effects combined. The cardiologist who saw me for the chest pain the ulcers caused ruled out cardiac problems and immediately referred me to the gastroenterologist. GPs may be fond of doling out motrin (mine was) but specialists are very suspicious of it.

Since my experience, I've hardly given my kids anything, but when they have a fever (which is rare...my kids are extremely healthy, knock on wood, and do drink milk), I dose them only with tylenol as absolutely needed (fever over 101) and only the dosage on the bottle.

Tylenol, as scrapinker says, is also dangerous when taken too often or in too big doses. A man on our prayer list actually died because he popped tylenol all the time. I guess the message here is to take any and all medication only as needed and at the lowest dose necessary!

scrapinker, I'm so glad your child has benefitted from the milk-free diet!!! I do think it's important, though, to realize that all our children are unique, and not all of them benefit from GF or CF diets because not all of them have gastrointestinal symptoms.

Children who are sensitive to any component of mild shouldn't drink it, but for children who are not sensitive, it's a very important source of calcium. My grandmother died a horrible, slow, lingering death of osteoporosis, and I'm glad my kids are getting lots of milk, growing well, and staying healthier than most other kids I know. If either of them had food sensitivities, I would, of course, respond appropriately.

Wow, this post got long. I'm sorry! I sincerely hope I didn't offend anyone because I do truly believe that we need to treat each child uniquely because each child is unique. Whatever works for your individual child, you should do, without judgment from anyone else, because we are all in this together!
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Old 02-25-2010, 03:29 AM   #2071
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Sorry, one more thing....

Constant ear infections is a sign of milk allergy or intolerance. Are you milk free? My ENT poo-poo-ed me on this, but my research says otherwise.
DS2 had 37 ear infections by age 4 and then when I started the Casein free diet (dairy products) he never had one after that.
DS2's DR thought it was nonsense but I am a believer!
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Old 02-25-2010, 03:41 AM   #2072
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WOW Susan! You have been through alot!
I know Tylenol can damage the liver so I cannot take it as my live is already damaged from my Autoimmune illness. My immune system attacks my liver when it gets to high. I was in liver failure twice but thankfully Steroids saved me.
For Ibuprophen - I admittedly take quite a bit. I still have my headaches and since my ruptured aneurysm I cannot take migraine meds anymore so I am left with 4 Ibuprophen at a time to get rid of it. I am always scared though taking it.
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Old 02-25-2010, 03:46 AM   #2073
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Quote:
Originally Posted by meluvstampin View Post
WOW Susan! You have been through alot!
I know Tylenol can damage the liver so I cannot take it as my live is already damaged from my Autoimmune illness. My immune system attacks my liver when it gets to high. I was in liver failure twice but thankfully Steroids saved me.
For Ibuprophen - I admittedly take quite a bit. I still have my headaches and since my ruptured aneurysm I cannot take migraine meds anymore so I am left with 4 Ibuprophen at a time to get rid of it. I am always scared though taking it.
You've been through a lot, too! Definitely take motrin with food. The surgeon said that makes a huge difference, but most people pop it whenever, without taking food, too. I took a perscription dose every night right before bed without food, and that contributed to my problem, I'm sure. But the doc said that everyone has a difference tolerance for it, some being more sensitive than others.

Hugs,
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Old 02-25-2010, 07:47 AM   #2074
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Wow...coincidence? This article came to my attention today about how drugs are not always magic bullets. There is a section on aspirin and Tylenol and how they would not have been approved by today's FDA standards!
http://www.theatlantic.com/doc/201002u/drug-development
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Old 02-25-2010, 08:35 AM   #2075
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Great article, Catherine! Thanks for sharing the link.
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Old 02-25-2010, 12:01 PM   #2076
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Great information and links everyone - thanks!!

I did give up on getting any of the liquid antibiotic down DS; we used the antibiotic ear drops until we ran out. Everything seems OK for now.

I couldn't agree more with what was posted earlier: our kids are all unique and what works for one may not work for another. All we can do is gather information, try certain things and see what happens.

Shared information is shared knowledge I can't speak for anyone else, but please know, I have no problem with anyone being brutally honest and/or blunt on this thread.

Thanks again everybody!

Lorraine
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Old 03-12-2010, 08:00 AM   #2077
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I just finished reading my April issue of PARENTS magazine and loved how there were 5 or 6 mentions of autistic kids.

I know some of this is due to April being Autism Awareness month but still, it was so nice to read the information

Love how Lindt is donating money to Autism Speaks for each chocolate bunny bought!

Lorraine
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Old 03-30-2010, 12:44 PM   #2078
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Hope everyone is doing OK.

April is Autism Awareness Month.
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Old 03-30-2010, 01:55 PM   #2079
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We're doing fine. Does anyone else find this time of year to be TOTALLY BUSY?!?!?!?! Gosh, I'm way behind in all my online activities and feel like I'm barely keeping head above water right now. We had Jack's dev ped appt yesterday, and even that felt rushed. I'm emailing the doc for follow-up info. And he's awesome and very communicative...we just had too much to cover in an hour, I guess!

Hugs to everyone. Hope all is well!
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Old 04-17-2010, 08:29 AM   #2080
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Hi Ladies!
Life does seem to be super busy, though for me it should be less busy as soccer season (3x per week for 2 kids) and extra-curricular school sports are winding down now. Have been busy saving my kids' amazing school from closure and WE WON!!!

What a whirlwind 8 weeks of hard work that was, totally a blur. The kids were living off of cereal and apples and I'm not even kidding! Now that the school is staying open (super awesome because I have no idea where else would be so amazing for all 4 of my kids' learning styles!!!) I have been resting and recouperating my mind and trying to take back the house from the disaster zone it had become. Eek!

On top of that it's report cards (and teacher interviews) for all and IEP time for our PDD-NOS son and wowza does the principal use a lot of super-harsh, super-negative language. Um, hello... the kid is 5, is tender-hearted, and is doing above ALL expectations at school. Cut him some slack and write something nice, would you?!?!?!

I don't know if it's because I'm sick of stupid policies and lame administrators, but I'm kind of feeling 'put out and pissy' as I think on the upcoming meeting. I know that won't be the most useful attitude so will work hard to check it at the door, but... don't you get sick of fighting extra for your higher needs child? I do. Every child is worth it. Every child deserves a fair chance. Every child deserves to be loved. Really people, must we tangle that up in red tape and negative wordings???

Okay, off my soap box now!

Our son is doing AMAZING and other than the violent flair ups at home and the usual dinner time tantrums I shall not complain.

IN FACT.... the other morning at Moms Group I was speaking with our Children's Pastor about the transition plan to the next age SS class. Another mom noticed the PICS/PECS tin that we use and asked what it was. I explained it was B's picture schedule that he uses to know what's coming next. She had a blank look. I explained how it was a security blanket of sorts and then showed her how each picture was velcro-ed onto the strip. She had a blank look. "He's autistic." I said. She swivelled in her seat, scanning the room for my kids, "Who is?" "Orange shirt, orange hair, our 5 yrs old." "He IS? I knew he liked his clothes a certain way but... all kids have their quirks." "Yes, he has a fair share of quirks." "But, he doesn't look like anything's wrong." [tears in my eyes, smile on my face] "You're right. That's because we have worked our asses off for the past two years." "Oh." [she turned away to process and to avoid any details... people don't really actually want to KNOW things, do they! ]

So... wow. My worries at the start of this journey were that people would judge B based on 'autism' not based on B-the-person. The two years of intense work we have put in were an emotional avalanche for our entire family, and there are some areas we are still firmly buried under... but glimpses of progress and real progress and 'typical behaviour' moments or even days have sure given our family the hope we needed when our reserves were lowest.

Okay, totally rambly post there. Guess I had things to say.

ENJOY YOUR DAY, may find at least one glimmer of hope and happiness in it!!!
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