Re: Hi All! I'm new to the group.

[Guest guest]

Hi ,

My son Quentin 21 also has Lennox Gastaut, which started as infantile spasms at

3 month following his vaccines and despite many meds and trips to several

neurologists across the globe.

Have you looked at the homes created by the hope foundation for epilepsy and

autism?

Thais

[Guest guest]

Hi.. I am also new to this group and have an 11 year old with Autism.

He too is really sweet at times, but, also has aggression issues. I'm just

wondering what other's

have seen with aggression. We have a behaviorist and a neurologist who has him

on a low dose of Risperdal.

Just wondering how this plays out with puberty... Uggh

[Guest guest]

Hi Thais,

No and I would love to.  Where are they located? 

Have you had aggression issues with Quentin?  It's an issue here!

Thanks,

________________________________

From: Francis PALLUAU <fpalluau@...>

IPADDUnite

Sent: Fri, July 8, 2011 6:07:07 PM

Subject: Re: Hi All! I'm new to the group.

 

Hi ,

My son Quentin 21 also has Lennox Gastaut, which started as infantile spasms at

3 month following his vaccines and despite many meds and trips to several

neurologists across the globe.

Have you looked at the homes created by the hope foundation for epilepsy and

autism?

Thais

[Guest guest]

Hi Richelle:

It was the darnest thing, but my son Noah was a kicker and hair puller from the

age of about four until mid-puberty. About the age of fourteen, maybe fifteen,

he started calming down considerably. Now, when I tell newer acquaintances

about his past " behaviors " , they always look a little skeptical. Of course, his

awful sleeping patterns persisted!!!

But I will take the lack of sleep over aggressive behaviors, any day!

Just letting you know, not to give up hope!

Ellen

Ellen Garber Bronfeld

egskb@...

[Guest guest]

How could I forget the naps and chocolate!!! Good thing my partner is on the

ball this morning (ok...so it's afternoon, already!!!)

Ellen

Ellen Garber Bronfeld

egskb@...

[Guest guest]

Thank you all so much for your experiences with aggression.

It is not easy staring into this black hole.

I remind myself to take things on a day to day basis.

I am also looking into several supplements.

I read that magnesium deficiencies are common and can help with hypersensitive

hearing which can

accompany puberty.

It's a small thing that can't hurt and may help.

[Guest guest]

I just wanted to give a little update.

My 11 year old son with high functioning autism has not had

a physical meltdown since July 4th. Whewww.

We have been giving a magnesium supplement as well as continuing with his meds.

We also have a behaviorist.

School starts on the 24th of August.

I sense anxiety already, but am working on talking about it with him and social

stories.

Man.. I hate autism.. It is so draining.. Then emotional roller coaster of

this disorder is one ride

I'd like to get off of.

I am really appreciative of this board though, and, all of the questions and

great ideas.

Sometimes I can't believe I live the life I do. Other times my heart is so

full I think it will burst.

A lot of extremes..

[Guest guest]

Hi Richelle:

I think you pretty much described most of our lives. Even those whose loved one

doesn't have autism, can relate to the ups and downs and highs and lows of

loving and assisting someone with an I/DD...

Things are good right now with my son Noah, but when I think of what life was

like at it's worst, I haven't a clue how we all survived! What I do know is

that we cherish the good times!

Ellen

Ellen Garber Bronfeld

egskb@...

[Guest guest]

Well said Ellen..

I wish I could learn to not always expect the other shoe to drop at some point

though.

It makes it harder to enjoy the good times.

It is getting a little better though.

[Guest guest]

I remember once when Evan was about 4.

I brought him to visit my mom and sister along with our dog (to WI).

They were more concerned about getting lunch on the table, when I really could

have used a little help.

I said, " Maybe I should just go home " . And my mom said, " Maybe you should. "

It was a snarky comment. I know she didn't really mean it.

It was chaos, and I was having a hard time wrangling my two.

The thing that stuck the most with me was my sister looking at her and saying,

" This is her life " .

That was the saddest, quietest lunch I have ever eaten.

I cried most of the way home.

Most people will never understand. How could they.

[Guest guest]

Some just don't want to understand. Angel is 22 and some relatives still don't

have a clue. They still think I can keep her in line and be servant girl for

family members who feel they shouldn't have to serve themselves (and I'm not

even the host of the get together).

>

> I remember once when Evan was about 4.

> I brought him to visit my mom and sister along with our dog (to WI).

> They were more concerned about getting lunch on the table, when I really could

have used a little help.

> I said, " Maybe I should just go home " . And my mom said, " Maybe you should. "

> It was a snarky comment. I know she didn't really mean it.

> It was chaos, and I was having a hard time wrangling my two.

> The thing that stuck the most with me was my sister looking at her and saying,

" This is her life " .

> That was the saddest, quietest lunch I have ever eaten.

> I cried most of the way home.

> Most people will never understand. How could they.

>

[Guest guest]

, this is so sad. I don't get much help either. Sometimes, my husband

doesn't come with me and I finally had to learn to tell the family that I

couldn't help them unless I got help with my daughter. Sometimes, the oldest

nephew will keep on eye on her when we're at his family's house.

A couple of times, I've brought Angel's support living assistant to functions

that were at a restaurant. What a tremendous improvement in her behavior and I

finally get a chance to mingle. My sisters have told me that I could bring her

to their house for functions.

>

> I'm sorry you went through that. I have three children with intellectual

> disabilities. Rick is 20 and has Down syndrome, andra is 17 and has

Autism

> and I adopted who is now 16 and has Down syndrome, Autism, Hearing

> Impaired and has some other medical issues. I gave up even trying to visit

> family. 2 years ago I attempted to take all three to a Christmas Eve party.

It

> was heart wrenching to me because no one was willing to lend a hand. I just

> took the kids and went home. I have told my family if they want to see us,

come

> over! Every other year I will hold a family BBQ in the summer and that is

when

> I see the crew. It is completely exhausting! I have a large family on both

> sides; but that is all I can do.

>

>

> Bedard, PLA

> Ricky, andra and 's Mom

> Mothers on a Mission, Inc.

> 6515 Stanley Avenue #4

> Berwyn, IL 60402

> 708-217-3196

> www.mothersonamission.net

> www.noewait.net

>

>

>

> " Science may have found a cure for most evils; but it has found no remedy for

> the worst of them all -- the apathy of human beings. " - Helen Keller

>

> I don't regret my past, I just regret the time I've wasted with the wrong

> people!

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>

> ________________________________

> From: Richelle Post <richellepost@...>

> IPADDUnite

> Sent: Tue, August 9, 2011 10:08:07 AM

> Subject: Re: Hi All! I'm new to the group.

>

>

> I remember once when Evan was about 4.

> I brought him to visit my mom and sister along with our dog (to WI).

> They were more concerned about getting lunch on the table, when I really could

> have used a little help.

> I said, " Maybe I should just go home " . And my mom said, " Maybe you should. "

> It was a snarky comment. I know she didn't really mean it.

> It was chaos, and I was having a hard time wrangling my two.

> The thing that stuck the most with me was my sister looking at her and saying,

> " This is her life " .

> That was the saddest, quietest lunch I have ever eaten.

> I cried most of the way home.

> Most people will never understand. How could they.

>

>

>

[Guest guest]

>

> , this is so sad. I don't get much help either.

I'm having the same thing happen. My stepdad's memorial service is in a couple

weeks. Most of my brother in laws will be there with my sisters. One of my

sisters is bringing all of her kids (4 of them), along with her hubby. My

youngest sister & I will be the only ones without our spouses. She has a son

with autism & my son , is too disruptive to take to a family gathering like

that. I've taken him to other family gatherings, but since we live so far from

everybody, it's a lot easier not to.

We live closer to my hubby's side of the family, & there used to be more family

gatherings when he was little; not so much anymore, because everybody has their

own families,etc.

Liz, mom to 29 yrs. Blind, adhd, ocd, depression, cmv

[Guest guest]

Liz, believe it or not, but 4 years ago, when my father in law passed way, Angel

was an absolute angel at the wake (there for several hours) and the funeral.

Her daddy and I were so proud of her. To help her stay on track, we took two

breaks with her to go the a restaurant to get something to eat (even though my

sisters in law had food brought in). It helped her tremendously.

> >

> > , this is so sad. I don't get much help either.

>

>

> I'm having the same thing happen. My stepdad's memorial service is in a

couple weeks. Most of my brother in laws will be there with my sisters. One of

my sisters is bringing all of her kids (4 of them), along with her hubby. My

youngest sister & I will be the only ones without our spouses. She has a son

with autism & my son , is too disruptive to take to a family gathering like

that. I've taken him to other family gatherings, but since we live so far from

everybody, it's a lot easier not to.

> We live closer to my hubby's side of the family, & there used to be more

family gatherings when he was little; not so much anymore, because everybody has

their own families,etc.

>

> Liz, mom to 29 yrs. Blind, adhd, ocd, depression, cmv

>