Re: Keeping it together

[Guest guest]

I wish i could help, then i could help myself. my son is great in school, all though lately i hear a bit hear and there that he hit a child, acted up here and there, but nothing like i have to deal with at home. He is so out of control its' scary! he is so out of control, that sometimes i dont even think that he is "here" when he has these outbursts!

everyone i talk to tells me that it will get better, when? when he's in a padded cell or me? or when he hurts me so badly or 1 of his siblings so badly, as it is he spits,kicks,bites,puches,chokes,you name he does it, we do sensory, theraputic listening, tried the diet, do the brushing,do the deep pressure,meds, nothing works.

[Guest guest]

Anne, recently I signed up to get newsletters from www.autism.about.com and there is a lot of information on modifying inappropriate behaviors in children with autism. My son has had increased stemming and hyperactivity since late winter so I have been using some of the info I've read to use in a behavioral notebook so I can show it to a behavioral analyst my son has an appointment with next week. I have been attempting to discover the purpose his behaviors serve him. All behaviors serve a function. They are not random. Whether it's to gain attention, gain a tangible object, escape from a consequence or release tension, each behavior is there for a reason. My son is 5 also so our sons are very young to be experiencing hormonal surges but it could be a possibility. At your appointment with the DAN doctor next week be sure to tell them everything about your son's behaviors and hopefully there is a dietary/nutritional change you can make right away that will have a positive effect on your son. My son has an appointment in October with a DAN doctor and I'm excited to see what will come out of it. Don't despair. If it's okay, can I forward your e-mail message to some friends in Miami who have been there, done that with their 10 year old autistic son who use to have meltdowns when they took him out in public or screamed if he didn't like the fabric of his clothing and he couldn't be touched, maybe they can help direct you toward some help locally. Recently, I saw a video of this child playing the piano at a recital, he was great!

[Guest guest]

I know that when I'm frustrated, the way I react just get's him going

even more. But sometimes it's impossible. I guess i'm still

oblivious to this autism thing. It was so hard ot even get him dx.

as autism as he has so many " positive " things going in his favor.

Well, he did. I just don't know what happened!! Is it a stage..will

this continue to get worst. Why all of a sudden, when he was making

such great progress. I swear, sometimes I feel like i'm " useless " .

Then I want to kick my own *ss for having a pity party. He is the

greatest thing in the world to me. I love him so much and would be

lost without him. This emotional roller coaster is a bear. Doing it

alone is even more difficult. I know I shouldnt' feel sorry for

myself as there are so many women/ men out there that have it 10

times harder than I do. They have several children on the spectrum,

with more serious issues than my kid having a sh*T fit in SAMS. I

apologize to those parents. I do appreciate my child and I am

greatful, but .....well...I don't even know how to put it into

words..those parents that are in my boat understand.

Forgive my weakness. I'm just so overwhelmed research, looking for

help, trying new things, etc. I just want 2 scream...It's nice to

know (well, maybe nice isn't the appropriate word) but,...it's nice

to know that i'm not alone. But most of the time, it feels that way

[Guest guest]

Ann, I would be very worried about the MMR and the fever afterward. I

absolutely refused to let Evan or have any more vaccinations after I

started reading about all the problems. Evan was 3 yo then and was 5

yo. Now my daughter has and back with her and their doctor

tells her that needs Hepatitis B vaccinations and she takes him

immediately for one. I blew my top but she is the mother, not I. I just

raised him for the past 8 years. I wish that I could remember what was said

about vitamins and building up the child's immune system if you were getting

them the vaccinations.

On the other hand, the mmr might not have anything to do with it. It just

might be coincidence. If it makes you feel any better, Evan has also been a

little bugger lately. I am getting too old to wrestle that 100 lb 10 year

old. His mother can barely wrestle him and it has been getting into a

wrestling match almost everytime we let him out the door. He is focusing

more and more alert but also more determined to get out and check out the

world. I hope that the DAN doctor can help you when you get to see him.

Betty

[Guest guest]

First, you need a break, is there anyone who can let you get some R and R ? Second, the "looks" of the "unenlightened" are indeed tough to take sometimes. I have personally lost it and made public service announcements LOL. Your son needs to be exposed to the world just like any other kid. Forget about those "typicals " If you must address them, go ahead, then look at their faces ! They are embarrassed by their ignorance.Third and most sincerly, you have this group behind you.Email privately if you need to VENT, we have all been there.

I, personally am not the most autistic savvy in this group, but I do have two tough ears and most importently I CARE !

CB's Granny

[Guest guest]

Thanks for including the cat story, sometimes I think my cat is autistic too (appears as deaf, very aloof, everything on her terms). She's 11 years old so I have had her along time and she's mean and hates men but is gentle with my son--I think they relate to each other. Anyway, totally irrelevant but I laughed when I read your post about brushing the cat along with your son for sensory input.

[Guest guest]

Thank you for your support. I usually (90% of the time) feel that I " m

all alone in this wacky place. My son usually visits with his father

on sunday's from 11-6. Although I feel his dad should be involved

more, I am satisfied with the 7 hours ot catch a movie/lunch with my

sis. But last weekend he was moving to ft. lauderdale (about 1 hour

south) with his parents so I did't have my time to " defrag " .

We had an eval. with an OT to work on Nicky's sensory issues. He has

been seeking input lately, deep pressure, vestibular, prioproception,

etc. She showed me how to brush him (guess i should do the cat too,

while i'm at it) and just be on him 24/7 with his behaviors. Make

sure he follows thru on requests and let him know I " m in charge. That

the lack of structure, change in routine caused him to have a sensory

overload. So she will be working with him on a weekly basis (1/2

hour a week at $50 a pop) to address these issues. She said that most

of our kids do not make progress from adhd medications and do better

with antidepressants. She Pretty much poo-pood the DAN! doctor and

theories that you can recover from autism. She didn't really say

anything negative about the diet but said that she's been workign

with kids for 10 years and the only thing that makes the difference

is consistency in discipline, structure and therapies. I have an

appointment with a DAN! doctor on Monday. Anyone have any

positive/negative experiences with hone? You can reply to me off line

if you would rather as I know this can be a touchy issue...

Thanks

[Guest guest]

Autism is one big rollercoaster ride Ann, and keeping it together is one the hardest things we have to do.

It's a 24/7 job and things are not going to go as you plan, I guarantee it.

Many times, regression is followed by progress.

Do you get any respite? Is he your only child?

You say he has language, but how functional is it? Is he able to fully communicate what he needs/wants? Do others understand? It's possible that what they "want" him to do in school, he's bored with? He may need more challenging work, not just work that tries to make him "compliant". If he's "not listening", maybe they are using too many words. If he won't "settle down", maybe there is something in the room that is disturbing him (lights, smell, sound), etc.

Everyone that works with your son needs to take the time to figure out what his behaviors are trying to communicaiton. Behaviors are communication. It may be something very simple as not wanting to do repetitive work or being frustrated that people do not understand what he wants/needs.

Autism is long term. It's hard as hell. Somedays, totally unbearable. Make sure you have time for yourself to take a break and get away from it.

Keep your eyes, ears, and mind open and know that he's not "behaving" this way to piss you off or be defiant. He's trying ot tell you something.

Good Luck!

~Penny~ - Mom to Jacqui, 9 1/2, HFA

"It was like that when I got here." - My son Jeff's Yearbook Quote - May, 2000

-----Original Message-----From: Ann [mailto:jerzyannie@...]Sent: Friday, July 30, 2004 6:02 PMautism Subject: Keeping It TogetherMy 5 y/o son, pdd, has regressed bad since turning 5. He was out of school for a week, then in camp for (3) weeks before starting summer school (same as during the year). He has been attending the extended school year for 5 weeks. He is a bear in school as well. They said they can't believe this is . That he won't settle down and he's always squeezing people (sensory) and not listening, not wanting to complete tasks, etc.

[Guest guest]

Yay Evan ! Sometimes Our Kids do amazing things that surprize and delight you... First day of school tomorrow with CB. Im really kinda worried this year, since they stopped his OT a couple of months ago he has been very aggressive. Mommy goes to RC on Wednesday to fight to get it back. The Therapists say his gross motors are excellent, so there is no need, but it really helps his stress levels. I think Our Kids need more relaxation and stress reduction than "typicals".

CB's Granny

[Guest guest]

>Autism is long term. It's hard as hell. Somedays, totally unbearable. Make sure you have time for yourself to take a break and get away from it.>>

Amen, to that, Penney. My daughter watched Evan this evening while we took a short break at Denney's.

He would have like to come with us but we desperately needed the break since he has been so busy this weekend. If school was not tomorrow I am not sure what we would have left in the house. And he is not trying to be destructive, he is just checking things out or exploring. Right now, he is climbing on all the furniture. He has discovered the card to our Dish receiver and keeps trying to take it out. He succeeded once but we caught him right there and just had to wait for the Dish to come back online or what ever you call it. And I have no idea how to keep him from getting it when no one is in the room with him.

Evan did do two things today that astounded me. One was to rearrange all my collectible Barbies that are on the wall. He woke me up this morning by hearing him moving around in the living room. When I got up he was busy taking the dolls down from one side of the room and putting them on the other. he did a very nice job and I told him so, then I told him to leave my other dolls alone that he started giving the 'eye' to. So far he has done that. Then tonight I couldn't believe my eyes when he started stacking blocks up. No small deed for most one year olds but something Evan has never done before except when someone was working with him with matching.

Betty

[Guest guest]

Have you thought about gymnastics for CD? Karac goes every Tuesday and loves it. It really seems to help him. Karac is going to start horseback riding lessons on Wednesday. They are free for special needs kids and adults. He has gone to equest on Saturdays for several years and he enjoys it very much, but it is very expensive. I am thankful for someone on the list who told me about these free lessons in the Dallas area. I think our autistic kids really benefit from these kinds of things. Pat K

[Guest guest]

We finished swim lessons two weeks ago and currently Mommy has nothing planned, But I will suggest it. We definitely need a athletic undertaking LOL

CB's Granny

[Guest guest]

great post, great points, kc, & thanks, & MERRY CHRISTMAS to us all!

[] Keeping it together

> Members,

>

> Keeping your head straight, mind clear, on a positive track at times

> can be out of our control and very difficult, if not impossible to

> do. I can understand the frustrations, anger, depression, just as

> much as anyone else, which at this time of the year tends to be

> heightened, even for the " nonsick " population. 'Tis the season. Many

> of you, like myself, were hoping our situtation would have improved

> much more than they have by now which would have made the holidays

> (not to mention our lives) much easier.

>

> You rarely hear of someone recovering from this type of exposure and

> when you do, it gives us all hope. Especially for those that seem so

> much under the weather continuously. But for those that have

> recovered sometimes the rest of us are jealous of that individual

> and become angry at ourselves because we have not been able to

> accomplish the same level of recovery and now we are attacking

> others mostly out of sheer frustation. The holidays don't make it

> any easier.

>

> No one is 100% cured, but they are " cured " enough to live a more

> normal life. For whatever reason of their own, whether it's

> avoidance or some form of drug therapy, if it worked for them,

> great.. I'm sure both types of protocols are beneficial to others.

> Every person has to do what he/she thinks is best for their own

> condition/recovery.

>

> Let's not attack each other personally/directly on the way they've

> handled their situation, their forms of recovery. Questioning is one

> thing, down in out attacking is another. Otherwise, please take it

> to the email, for the sake of all the other members on this board

> that come here looking for support and not a mud slinging contest.

> Many of us have been here long enough and know how these toxins can

> effect ones thinking, but at the same time we must think of those

> that are just learning about this condition and what it can/does do

> to you. New members are joining daily looking for help and

> unfortuantely they may hesitate to post at the time they need to the

> most, because of the confrontation occurring.

>

> Mama always said, " if you can't say something nice, don't say

> anthing at all " and there are certain days just for that reason, I

> stay off the board.. Many of us know what it is like to lose a love

> one, a family member, aquaintance, a close friend, especially due to

> this type of exposure, it's not easy and many times it brings the

> worst out in us. Not to mention the anger and many other emotions.

> I've been there many times, more than what I would like to admit. It

> hits too close to home when you or someone you know is suffering

> from the same type of exposure that many have lost the battle with.

> Your mind goes in many different directions and it's definately very

> difficult to remain positive.

>

> As difficult as this time of year is, let's try and keep your

> thoughts/posts positive.

>

> Merry Christmas to all,

>

> KC,

> Moderator

>

>

>

>

>

>

>

>

> FAIR USE NOTICE:

>

>

>

[Guest guest]

Merry Christmas and a healthier New Year to all. I pray for effective

help from the medical community to get us all turned around.

BTW, KC, my Mama always said the same thing.

Barth

TOXIC MOLD SURVEY: www.presenting.net/sbs/sbssurvey.html

---

t> Members,

t> Keeping your head straight, mind clear, on a positive track at times

t> can be out of our control and very difficult, if not impossible to

t> do. I can understand the frustrations, anger, depression, just as

t> much as anyone else, which at this time of the year tends to be

t> heightened, even for the " nonsick " population. 'Tis the season. Many

t> of you, like myself, were hoping our situtation would have improved

t> much more than they have by now which would have made the holidays

t> (not to mention our lives) much easier.

t> You rarely hear of someone recovering from this type of exposure and

t> when you do, it gives us all hope. Especially for those that seem so

t> much under the weather continuously. But for those that have

t> recovered sometimes the rest of us are jealous of that individual

t> and become angry at ourselves because we have not been able to

t> accomplish the same level of recovery and now we are attacking

t> others mostly out of sheer frustation. The holidays don't make it

t> any easier.

t> No one is 100% cured, but they are " cured " enough to live a more

t> normal life. For whatever reason of their own, whether it's

t> avoidance or some form of drug therapy, if it worked for them,

t> great.. I'm sure both types of protocols are beneficial to others.

t> Every person has to do what he/she thinks is best for their own

t> condition/recovery.

t> Let's not attack each other personally/directly on the way they've

t> handled their situation, their forms of recovery. Questioning is one

t> thing, down in out attacking is another. Otherwise, please take it

t> to the email, for the sake of all the other members on this board

t> that come here looking for support and not a mud slinging contest.

t> Many of us have been here long enough and know how these toxins can

t> effect ones thinking, but at the same time we must think of those

t> that are just learning about this condition and what it can/does do

t> to you. New members are joining daily looking for help and

t> unfortuantely they may hesitate to post at the time they need to the

t> most, because of the confrontation occurring.

t> Mama always said, " if you can't say something nice, don't say

t> anthing at all " and there are certain days just for that reason, I

t> stay off the board.. Many of us know what it is like to lose a love

t> one, a family member, aquaintance, a close friend, especially due to

t> this type of exposure, it's not easy and many times it brings the

t> worst out in us. Not to mention the anger and many other emotions.

t> I've been there many times, more than what I would like to admit. It

t> hits too close to home when you or someone you know is suffering

t> from the same type of exposure that many have lost the battle with.

t> Your mind goes in many different directions and it's definately very

t> difficult to remain positive.

t> As difficult as this time of year is, let's try and keep your

t> thoughts/posts positive.

t> Merry Christmas to all,

t> KC,

t> Moderator

t> FAIR USE NOTICE:

t>