OOOOHHH. I've been wanting my own room OUT OF THE HOUSE for a long time. That was one of my dreams for after retirement. It was quickly shot down. Now I am satisfied to have a room of my own, but it is sooooo jam-packed with hobbies. I am slowly "dissolving" some of those hobbies and trying to concentrate on my quilting and my scrapbooking. The cake hobby is in another room. (Poor DH. He says I have taken over the whole house as the kids moved out.

I am so happy for you. Just planning and getting the room ready will be great for your healing process. You are in my prayers.

Yes, autism awareness is so badly needed. Perhaps there is an organization in your area that could help you to help those around you become aware. GBY

I know what you mean about autism, and people thinking they'll 'snap' out of it. Both my son's boys are autistic - the 9 year old more than the 7 year old (who will be mainstreamed next year after repeating kindergarten). Their 'other' grandmother keeps saying 'They'll snap out of it.' She just doesn't get it. The 9 year old is finally putting verbal sentences together and getting some of the thoughts we KNEW were in his head out for us to understand. He's a very sweet boy, and extremely bright, so he does have a possibly good future, expecially now that he's beginning to communicate verbally. My DIL is a saint who has never given up. I just wish I lived closer to them so I could help more.

grammo, hope you don't mind if I reply to one of your repliers, lol?

Joanne wrote:
.....I also have a grandson with autism and people see a perfectly healthy boy and think we just need to discipline him more. They don't understand he is handicapped. .......Their 'other' grandmother keeps saying 'They'll snap out of it.' She just doesn't get it.

I am related, both by blood, and by marriages, to ppl with a.d.d. It is another frontier that needs much more attention, so I feel for you.
I know what it's like to get professional help and do tons of research etc. There is no, "snapping out of it". That's a pipe dream that any one would smoke if it cured these things! just being a little facetious about something very, very real.
There are 11 different kinds of attention deficit disorder and some of the symptoms look like other stuff. I don't believe a pediatrician or family doctor should ever diagnosed these children. Too many mistakes are made, but more than that, these families need counseling and training to deal with all that goes with these problems. I could go on and on, but I'm putting down the mike now...just wanted to say...we have a lot of disabilities in this country and a lot of cynics, some are really mean and critical, and others just don't understand but don't mean any real harm. Either way, it's the sufferers that get the short end of the stick. i rejoice with anyone that can get real help, even if it can only be monetary. It does help with the tools you need to cope with stuff. I'm done, lol. :wink:

Thank you. Good work. More of these messages are needed, and yours was wonderful.

Like many autistic people, both of my autistic grandsons also have ADHD, but it is controlled with meds. I know these meds are controversial, but without them, the boys simply cannot function. In their case, the meds have enabled them to be calm enough to make progress in school - the younger one enough to be mainstreamed into 1st grade next year - the older one to finally start sleeping through the night and put verbal sentences together at age 9.

Autism is a spectrum of 'symptoms' (for lack of a better word). Special ed teachers are angels, and school districts with good programs are hard to find. The economy is making it more difficult, too. Thank goodness, Congress passed legislation specifically to aid people with autism last year BEFORE the economic downturn. If I were younger, I would get an MA in Special Ed. As it is, I'm learning a lot by spending time with my grandsons - though I don't get to do that often enough. Soon, they'll be moving, so they'll be just a 6 hour drive from me. Hooray! I foresee more road trips and less quilting starting this summer - assuming they sell their house and move.

well, Joanne, I'm sorry the boys are moving six hours away, bc you seem to not only be very loving, but intuitive and you use the understanding we all started with...it goes away, if not used.
My oldest daughters MIL works with children with special needs and she is awesome at it.
She actually gets very tickled at times by some of her experiences. One little girl that is 11, but acts a lot like 6 at times, was told to do something and she wasn't being compliant. Phyllis had to warn her. The little girl said, "why don't you call the po-po, ho?" Her assistant heard this too, but was able to keep her composure, Phyllis managed to make it out of the room just before she exploded in laughter.
It takes a lot of patience, but Phyllis says she actually prefers to work with these kids, bc she understands that they have all kinds of problems they didn't ask for, whereas, some of the mainstreamed children, choose to act out on purpose.
It drives me crazy to hear ppl get on tv and say they did 'tests' proving that sugar etc. has no different affect on children/ppl than other foods. Well there are a lot of ways to do clinical trials and obviously it wasn't a broad range of children etc. bc I have seen kids firsthand that go from meek, mild and somewhat passive, to cookie crunching, curtain climbing, chandelier swingers after cookies and koolaid.
yes, there may be other factors involved besides just sugar, and that's the point. Foods are chemicals too.
Get constipated, change the flora of your intestines and see how peppy you are then,...your mood, your appetite, not to mention bloating and headaches, but don't take anything for it. Just snap out of it. :wink:

Thank you Pam for what you said. I have family with physical disabilities too, and one daughter lost her ssi, when she got married, as did my Sil when she married my handicapped brother. I get a little passionate about these things. hugs for that. :D

I didn't mean to turn this into an autism forum but I am glad some people understand kids with disabilities. I find myself educating people all the time when they ask questions. My daughter has also had to fight to get help for Zach. He was diagnosed early tho at 18 mos.
I used my sewing skills and sewed a sling swing for him. It satisfies his need for sensation. It hangs in the middle of my great room.
I hope to teach him to quilt some day!!!

Our Zach is a high functioning austistic. He's 8 now but in some areas he's 6. He is in second grade and doing most of the second grade work. We spend most of our time outsmarting him. He is a runner so we have to keep our doors locked alot. But unlike alot of autistic people he is very affectionate. He loves to cling to you pretends he is a koala bear. He is a cuddle bug. Lots of love. He is very funny we laugh alot around him. We enjoy him and he stays with us (grandma and grandpa) two weekends amonth to give his mom and dad a break and to let them spend time with the other two kids. Zach takes so much time they get left out some.
A lot of people don't reallize how wearing it is on the care givers!!

He just learned cause and effect about a year ago and now he understands when he is in trouble he will have to sit on a chair which he hates!!!! to do so it usually works. I am always exhausted when he goes home!!

well, Rhonda, as a friend on here has said before, when we got sidetracked from original subject...she laughingly calls it, 'post hijacking'...think I am the guilty party.
not sure, but think the original thread kind of either faded out, or I hope, um, goodness, hugs to whoever started the post, my mind is "alice-ing" on me..(my aunt's word for alz-heimer's), hope you don't mind that the subject turned from just disability, but broadened a bit.
I think a lot of grandparents do what your describing, keeping children to give parents a break. I didn't have that. I kept my three younger brothers all the time, till I got married. My own three might have stayed with someone once or twice each, until they got to their teens and began sleepovers with friends, so I try to help my kids out all I can.
One of my girls, does like I did and has her kids on a schedule, so they have the security of routine and sleep habits are very important to children that get overstimulated etc. She does the majority of her stuff, while they are napping or have gone to bed.
anyway, it was nice that we got to talk about these things. We need an outlet for airing out our brains, so we can concentrate on the quilty stuff :wink:

It is quite alright thaqt you highjacked the conversation.
I HAVE fIBROMYALGIA and arthritis in most of my body. I look normal so people think I am just making up my illness. But believe me it is very real and it has taken almost 40 years to get help and support for it. Haave had even Doctors tell me it is all in my mind.

Bless you all for the good you do with the children

Linda D

(((BIG HUGS))) to you grammo, gentle ones. I have the fibro, but if I had arthritis on top of it...omgoodness. I take pain killers 3x's a day, and can't tolerate anything stronger. I would lose my mind.
One of my daughters has arthur's :wink: and she takes pain killers too, and she is in 30's with two small children. These are terrible diseases of the immune system.
I have a great allergy/immunologist that diagnosed me with multiple chemical sensitivities and I can't even begin to tell you what that did for me mentally. Took 11 years to get that dx. Grown, professional, doctors with degrees...shame on them...look at you like your nuts!!!
Oh can i commiserate with you on this. yes, dr.'s can be mean, even. Had one to tell me I needed 'head meds' :evil: . He was so mean to me, but I just sat and listened to him explode and never blinked and to give me satisfaction?...when he walked out, I said, "THANK YOU!" in an upbeat way, sort of calling it out as he went out the door. He knew I didn't mean it, cause he knew he didn't deserve it, but it was the only satisfaction I was going to get.
It's no doggone wonder you feel like happy dancing. I'll mental imagery, doing the snoopy dance with you...cha cha cha :lol: :lol: :lol:
P.S. thank you for not minding that we bunny trailed a bit on your thread. so nice of you.

Quiltncrazy - I like your term 'airing our brains.' My DDIL needs that frequently. When they move to VA they'll actually be closer to CT - the 6 hour drive is better than the 1 1/2 drive to the airport, the 2 hour flight to Chicago plus all the waiting & security stuff and the drive to their house in the Chicago suburbs.

Rhonda - our Charlie, the 9 year old, is also a 'runner' so I know what you mean about locking down the house. It's scary to have an autistic child who wants to get out of the house, and doesn't respond to his name being yelled, "Charlie, where are you?'

And all of you who are having trouble with docs being patronizing - patting you on the head or implying it's all in your head - one of the things we talk about over and over at my breast cancer support group is it's okay to fire your doctor! When they act like that, they're not doing you any good, and it's time to find one who will!

My Mom always told me to find doctors that were younger than me, so I did. Guess what - the GP I adored who is the same age as my kids retired from private practice last year and is now an ER doc. Blast and double blast! Thank goodness all the docs who are involved in my BC are younger than I am and haven't retired!

my goodness Joanne, you may have something there. I always went for the older dr.s cause I thought they were more experienced, but it does seem that by then so many are arrogant.
I just don't want my younger docs to be really good looking. Is that odd? That's not what your there for, but it kind of bothers me.
about the kids and lock down...I have one brother that used to love going naked...middle of grocery store, anywhere,...yanking those clothes off. He would strip, get a broom and use handle to push up chain lock on front door and run across the street to neighbors house. Back then, they didn't lock their doors. Surprise and good morning. What a wake up call!!! :lol:

grammo, love your avatar:
Passed the snapdragon part of my life,
Part of me has snapped and the other parts are draggin. LOL! great pic too. It's how I feel many days :wink:

Thank you for not minding that this conversation took the turn it did. That makes me feel less guilty! So very nice of you! :D

When Zach was littler he would wake up about 2am and stay up for 3 hours every night. My daughter Sara has 2 other children works in her husband's chiropractic clinic cub scout and girl scout leader and lots more stuff so she's on the go every day and she has fibromyalgia also. When she tried to get help from the doctors for Zach not sleeping the doctor accused her of just wanting to medicate him so she could sleep!! Duh if she doesn't sleep how can she take care of him and the rest of her family? It was hard on me and my husband also when we have him. He is on melatonin now which is the chemical that makes you sleep. His body does not make enough of it. I was angry for her that the doctor could be so unfeeling!!! She has had a very bad time with doctors but her kids are everything to her and she is a fighter!! She inherited from her dad that you don't wallk over me!! She also has a 10 year old posssibly may have aspergers(low form of autism) and a 6 year old daughter with Russel Silves Syndrome it is a growth disorder. She is very small for her age and has side issues like hypoglyzemia Sara is always going to the doctors!

I have really enjoyed sharing this conversation with people who care! :D

Good for your daughter and her kids that she is a fighter.
Ppl just don't get the 'realities' of living with children with these traits.
It takes incredible amounts of patience, which we do lose, energy, which has to be renewed and the consistency/unpredictability of it all is exhausting.
Poor thing, no wonder she was looking for a way for both of them to sleep. It's mind boggling to me, that a doctor could think a mother just wants to drug her child, but I have seen so much.
There are support groups, but who has time?...and sometimes for just a little bit, a person needs to be able to think about something else.
I know ppl who are just adamant about 'no meds' for a child. One friend whose daughter has adhd had her on meds, and she was doing so much better in school etc. i practically begged her to go get the counseling that was free to her...but, her family threw fits over the meds and shamed her. She took daughter off of meds, and now four years later, the little girl is the reason no one will spend time with the mother.
She acts like she is the child's friend and lets her run all over her. The daughter is nine and physically somewhat pushes her mother around and is allowed to be very...she is very impulsive and the whole thing has taken quite a toll on the child's self esteem. She has gained a lot of weight bc she insists on everything being her own way and won't eat anything but junk food, which in turn makes her behavior worse.
She is a physically very pretty little girl, friendly and I'm sure she is bright, underneath all that. Most of these children are very intelligent.
They just have trouble getting it out.
Oh, I am on a roll again, but you can see, these things really touch my heart.

Congratulations Linda!!!!!!!!!!!!!!

It's a great feeling when you get a cheque like that. I received my settlement cheque in January from my lawyer from a nasty car accident I was in 2 1/2 years ago. I managed to get myself debt free, no credit card payments and no student loan!!!!!!!!!!! Then I just put a downpayment on a house that will be closing this coming Thursday if all goes well!! The rest of the money will go towards moving, paint and other light renos to my new house!!! I too did a bit of fun shopping when I got the money!!

ENJOY!!!!!!!!!!!!!!!!!!!!!!!!!

Cheers
Andrea

As you say some autistic kids are very intelligent just locked in their own world. We are constantly having to outsmart Zach He is great at opening locks so we had to get a two key deadbolt lock for the doors so I could lock it and hide the key we also have hook and eyes on the screen doors up high for the summer so I can open the doors for air. But he gets a chair and pushes it over there. That does give me time to get there usually. We also have a door locked between the living room and the kitchen so he can't run water all over or get hurt when the oven is on. It is all aabout keeping him safe and teaching him social and self help skills like staying in our yard and not the neighbors. He takes 24/7 supervision and that means always knowing where his is and what he is doing. You can't step outside you can't go to the bathroom without having someone keep an eye on him. My husband and my mopm help me but Sara is usually on her own but Joey the 10 yr old helps her alot. The dad is a chiropractor and volunteeer fireman and raises a truck garden and is always on the run but he does help when he can.
zach's sister is 6 and she has a hard time she resents Zach a lot and she used to bite him to express her anger.
It is a stressful situation for the kids also that's why we try to plan time for the other two to have mom and dad's attention. I am Sara's only care giver for Zach so I try to help. He has a government waiver that helps with buying sensory stuff and anything that will help him.

Oh Rhonda, I'm sorry that your daughter has all those things on her plate. My DDIL says that she know God wouldn't give her more than she can handle, but sometimes I'm not so sure. Mostly, though, she's my heroine, as Sara must be yours.

People with Asperger's often turn out to be high achievers. Have you heard of or read books by Temple Grandhin? I may have spelled her name wrong. She's an Asperger with a PhD. Absolutely. I recommend her books highly. She really gives you hope about autistic people in general, and Aspergers in particular.

Thanks for the kind words! Sara has been my best friend almost from the time she was born. My three are all a year apart and I relied on her alot. We are very close. So I admire her in alot of ways. She is a natural care giver and takes care of her in laws health as well as her own family and she is a care giver for her dad to give me a break. She is a busy busy lady!! She is usually on the road or in the store when I call her!
Thanks for the suggestion I will check it out. Sara does a lot of research and passes a lot of info on to me. We have learned alot in the last 7 years.
Always interested in learning more that will help me deal with my grandsons. They both also have ADHD so they are on meds but still get antzy at times
Sara worried what Zach's life will be like as an adult but he is growing developmentally so fast it amazes us what he has learned in the last year or so!! Joey10 has social problems at school. Someone started a nasty rumor about him at school and he got up in front of the class and told the class it was not true and that he considered them all his friends. He has a hard time making friends. It was his idea and we are very proud of him for choosing to confront the bully this way. He did not know who started the rumor. Joey has aspergers tho the doctors won't diagnose it it is obvious in the problems he has.

I went to the site for Temple Grandin. I only got to read the article, but she seems to know her stuff. She was talking about the different kinds of thinkers.
She really nailed the visual thinkers, having to compute people's words into pictures, and then take their own pictures and compute them before they can spit out what they are trying to say back.
With adhd, the person has to do it, before they forget what the heck they were talking about. If they are talking to someone that is impatient or say, for example, a doctor, who is trained to anticipate what the patient "is going" to say...and interrupts...he will give that person new pictures, and the conversation is run off the track and neither knows it, at the moment.
That's why it is so important to listen to children, and let them get stuff out. Later, they may realize that what was said in the conversation wasn't what they meant at all :cry: They tend to be either very passive and let others lead them, too tired of their own minds, to fight to get it out right, or they get irritated with the whole process, and act out.
They seem normal on the outside, but their is a traffic jam going on inside their heads.
I don't know as much about autism, but I am intrigued. I don't think the two are all that far apart. There are a lot of children being needlessly medicated, but more often than not, they are being treated and overmedicated by family doctors, who don't have the knowledge and experience in that area.
So, the kids that really do need help, and who knows better than the parents and the grandparents...the ppl that are with them the most, in their own environments, where they can try to be as much of themselves as they can manage...these children, many of them, are going overlooked.
I have one daughter in the gifted range and i knew it. I also have a daughter who is at the high end of average and above in a few areas, and has adhd. Teachers of both of these kids, said they didn't see these things. The gifted daughter had sat scores that proved it, and she spent a year in a special class. She opted out, and I gave her my support all the way.
The other daughter was punished most of her third grade year by being isolated at the back of the room, with her desk turned backwards. Know when I found this out? About two years ago. She is 26 now. I would have made buzzard stew out of that teacher. I held my tongue for my daughters sake after she told me, but for closure, I went to that school. The principal used to be one of my teachers and was still there. She knows me well. My daughters third grade teacher is still there too.
I talked to the principal for an hour and a half, but never said a word to the other one. No point. She is one of those, can't be wrong, kind of ppl, and it wouldn't have done any good all those years later, but I got the whole thing out of my system, and shed some light on some of the things this teacher pulled over the years. She used to paddle one little boy, every single day!!! mind you, after lunch. Every day. Until his parents found out. I enjoyed hearing how they went to see this teacher and confronted her and the mother made it clear in no uncertain terms that she would be contacted if her son was disruptive etc. and there was to be no more daily spankings of any kind. I guess I am venting.
Probably help me to go look some stuff up. I always said, knowledge is the antidote to anxiety. So much of the time, it is for me. :wink:

There is a plaque hanging on the wall of the cardiac unit of Sick Children's Hospital in Toronto that reads:

"You must be a very special person to be given such a special child!"

I read that plaque many times over the years as I walked the corridors of that unit while my youngest son was in for multiple surgeries... we often hear the words, "why me?" when parents have a child with special needs. I never asked why me, instead I said "why not me, and what lesson am I going to learn?"

We learn more from our children than we ever will teach them . :)

I have told Sara at her lowest point when Zach won't stop screaming for something he can't have that God chose her for her abilities with kids and her loving nature. We are aware a lot of these kids end up in institutions and I ask her just think what his life would be like without you!!. She responds with how much he enriches her life but sometimes she needs to vent to me who understands and she needs to be reminded of where she and Zach are going in life. It is hard for a lot of reasons to live with 3 children who all have various medical and emotional problems and she is quilte frequently downhearted. We are Christians and she has her faith as well which really helps.
That about the thought process is very interesting and is very true. If you take too long to deal with Zach he just tunes you out. It has to be short and sweet to get anywhere with him. He has adhd and it is hard to keep his attention.
I appreciate your interest and "venting" it is uplifting to know people care. I haven't checked this lady out yet but I will. Thanks!!

That friend doesn't realize she isn't doing her daughter a favor by catering to her. That kid will have trouble with other people for the rest of her life when they choose to NOT cater to her!

My son finallly got one of those keypad locks meant for the OUTSIDE lock and put them on the INSIDE of outside doors. Charlie still hasn't figured them out. And if he does, they can change the combination.

When I told my daughter about this little girl her comment was these children need to be challenged to be as normal as they are capable of. Letting her get away with bad behavior does her no good. We believe in consequences the child understands and is appropriate for their level of understnding like time out or losing an activity. I agree with you completely!

Another interesting thing about Charlie (the 9 year old) - he can't think of ways to play, so he needs to have 'typical' (we don't say normal) friends show him how to play. He has a lot of typical friends at school - they vie with each other to play with him, which is great. He was chosen most friendly 2 years ago! He follows the other kids like a puppy at recess.

It really shows how involved you are in your grandsons lives! We are always sharing Zach stories here. We get a kick out of his achievements and his humor. The up side for us is he is usually a very content child. He has an aide at school that goes with him all day to keep him on track. He is mainstreamed this year for the first time and he goes to a resource room for a couple hours each day for help with his work. He is doing great once the school system finally figured out his needs!! They still don't always understand.
I'm sure you can relate. Autistic kids have alot of love to give!!

That is a wonderful saying to put on a plaque, and i am sure it gives encouragement to many.
I couldn't agree more, Shadow, about learning from children. We do have a job to do, but sometimes we forget that it is a two way street and we need to listen,...out of the mouth of babes... :wink: