Re: New here!

[Guest guest]

Hi ,

My name is I am new here too. Our four year old was dx’ed

with Asperger’s earlier this year. I feel similar to what you wrote. It can all

be very overwhelming and confusing. We too ask ourselves what is Asperger’s and

what is misbehaving. For us it’s very exhausting and very trying at times. Some

days are great and others are very difficult. The tantrums are extremely

difficult to deal with. Ella has been known to throw two hour tantrums. It ends

up feeling like survival of the fittest, who will outlast who…. We do our best

to not give in however it is not always possible and we give in.

We have relatives telling us it’s our parenting. It really

hurts our feelings because it ends up feeling like we don’t have support. We

know better but it is upsetting to realize others who are not there 24/7 think

it is just our parenting. We have a 22 month old who is very different, especially

in regards to discipline. I can just look at him and he knows it’s time to

shape up. Ella doesn’t get it, it’s all part of that social thing… We are still

learning as we go.

Right now we are

learning about the schools and truth be told we are nervous about sending her

to school. We also are having a hard time about insurance. I have been

searching for help and I do have a friend who is helping me see what is available

but it is time consuming and a lot of dead ends. From what I understand it is

all how they code it to the insurance company. I would like to bounce ideas and

such off one another. Are you here in the United States? I am in Alabama and

not finding too much in my town in the way of help.

Try to stay positive even when it seems hard, one thing that

helps me is when I get frustrated I always think of something funny Ella has

done and it helps better my mood when I am feeling challenged. Have a happy new

years!! To: autism-aspergers Sent: Friday, December 30, 2011 9:04 AM Subject: New here!

Hey all. We haven't had a diagnosis confirmed. They have firmly diagnosed her with expressive and possibly recessive language disorder and SPD but said they think they will end up with a mild aspergers diagnosis. In some ways I feel a lot better because I can now understand where my child is coming from. But at the same time I am very confused about what the differences between all these things are and how to know when she's just misbehaving and when it is related to this stuff. She is 4 and a half. All of this seems to have gotten worse in the last year and a half. Other than the speech she seemed perfectly normal in 2009. How can I tell whether it's Aspergers or just SPD and the speech? She has severe tantrums where she just goes into this rage and cannot be reached no matter what you do. And they can be short or last 35 minutes or more. But then there are days where she can be sweet, seem to understand you and be okay and we

wonder if we are dreaming up these problems. Those days are not frequent but still. She says she likes school but won't talk about friends and won't communicate with the teacher well. Will pee in her pants rather than tell them she needs to go potty. Doesn't answer direct questions. I'm at a loss. But I know with just the SPD diagnosis they won't help her at school and my insurance may not pay for her therapy. Any suggestions?

[Guest guest]

- I can totally relate to your feelings!  Know that you're not alone.  My son is 10 now, but when he was 4 his tantrums were out.of.this.world.  absolutely unreal.  He was our first child and we had family and friends question our parenting too.  I felt like such a failure some days.  But- I have three other children now and it's so obvious (even to those people!) that is wired completely differently.  I can tell you that things have gotten better.  We too survived for years, and it's oh, so hard, and so lonely at times- BUT! now that he's older, though he still has the occasional tantrum- things are so much better than they were.  We live a much more " normal " life and don't hold our breath wondering what the day will hold.  Know that you're an amazing mother- that your job is so  much harder than the 'average' mom, and that you truly are doing the best you can!  I am cheering you on here in VA- I wish i had known of a place like this when we were in those difficult days- to know that we weren't alone.  Don't be afraid of school- just know from all of us that it is a big job to be an advocate for your child.  This journey has been exhuasting and difficult, but I have grown in ways I never would have.  You can do this. It's not a coincidence that  Ella was given to you.

Good luck! -heather

 

Hi ,

My name is I am new here too. Our four year old was dx’ed

with Asperger’s earlier this year. I feel similar to what you wrote. It can all

be very overwhelming and confusing. We too ask ourselves what is Asperger’s and

what is misbehaving. For us it’s very exhausting and very trying at times. Some

days are great and others are very difficult. The tantrums are extremely

difficult to deal with. Ella has been known to throw two hour tantrums. It ends

up feeling like survival of the fittest, who will outlast who…. We do our best

to not give in however it is not always possible and we give in.

 

We have relatives telling us it’s our parenting. It really

hurts our feelings because it ends up feeling like we don’t have support. We

know better but it is upsetting to realize others who are not there 24/7 think

it is just our parenting. We have a 22 month old who is very different, especially

in regards to discipline. I can just look at him and he knows it’s time to

shape up. Ella doesn’t get it, it’s all part of that social thing… We are still

learning as we go.

 

 Right now we are

learning about the schools and truth be told we are nervous about sending her

to school. We also are having a hard time about insurance. I have been

searching for help and I do have a friend who is helping me see what is available

but it is time consuming and a lot of dead ends. From what I understand it is

all how they code it to the insurance company. I would like to bounce ideas and

such off one another. Are you here in the United States? I am in Alabama and

not finding too much in my town in the way of help.

 

Try to stay positive even when it seems hard, one thing that

helps me is when I get frustrated I always think of something funny Ella has

done and it helps better my mood when I am feeling challenged. Have a happy new

years!!   

To: autism-aspergers Sent: Friday, December 30, 2011 9:04 AM

Subject: New here!

 

Hey all. We haven't had a diagnosis confirmed. They have firmly diagnosed her with expressive and possibly recessive language disorder and SPD but said they think they will end up with a mild aspergers diagnosis. In some ways I feel a lot better because I can now understand where my child is coming from. But at the same time I am very confused about what the differences between all these things are and how to know when she's just misbehaving and when it is related to this stuff. She is 4 and a half. All of this seems to have gotten worse in the last year and a half. Other than the speech she seemed perfectly normal in 2009. How can I tell whether it's Aspergers or just SPD and the speech? She has severe tantrums where she just goes into this rage and cannot be reached no matter what you do. And they can be short or last 35 minutes or more. But then there are days where she can be sweet, seem to understand you and be okay and we

wonder if we are dreaming up these problems. Those days are not frequent but still. She says she likes school but won't talk about friends and won't communicate with the teacher well. Will pee in her pants rather than tell them she needs to go potty. Doesn't answer direct questions. I'm at a loss. But I know with just the SPD diagnosis they won't help her at school and my insurance may not pay for her therapy. Any suggestions?

[Guest guest]

Thanks ,

You wrote “But- I have three

other children now and it's so obvious (even to those people!) that is

wired completely differently. †I wish those who judged

would see Ella is wired differently too. I know it’s not my parenting, it took

a while but I realize and learned not to listen to those who judge. We have

some family who bring religion (we are a mainstream religion they are not) up

and want to blame someone. I get so irritated with their hypothesis. We have a

typical son who is 22 months old and totally different. I am at the point now

where I say things I would normally keep to myself. That only exacerbates the

situation. I also say “that subject is not open for discussionâ€.

As for the tantrums, I think they are getting better. They

are not as frequent but they are just as trying. I think it’s is because I have

been more liberal on picking my battles. I am so exhausted at times I just give

in.

I am curious, does your son have subjects that he is obsessed

with? Do you encourage other subjects or do you run with his obsession? Ella is

SOOOOOOOOO into the planets and she will tell you so much about them. We get

everything planetary we can find for her. I have been trying to get her

interested in other things but it is a challenge….

As for school I think we will wait until fall to send her. I

have talked to other parents in our area and they are not thrilled. In the

meantime I will sign her up for karate, gymnastics and music.

Happy New Year!

To: autism-aspergers Sent: Sunday, January 1, 2012 5:58 PM Subject: Re: New here!

- I can totally relate to your feelings! Know that you're not alone. My son is 10 now, but when he was 4 his tantrums were out.of.this.world. absolutely unreal. He was our first child and we had family and friends question our parenting too. I felt like such a failure some days. But- I have three other children now and it's so obvious (even to those people!) that is wired completely differently. I can tell you that things have gotten better. We too survived for years, and it's oh, so hard, and so lonely at times- BUT! now that he's older, though he still has the occasional tantrum- things are so much better than they were. We live a much more "normal" life and don't hold our breath wondering what the day will hold. Know that you're an amazing mother- that your job is so much harder than the 'average' mom, and that you truly are doing the best you can! I am

cheering you on here in VA- I wish i had known of a place like this when we were in those difficult days- to know that we weren't alone. Don't be afraid of school- just know from all of us that it is a big job to be an advocate for your child. This journey has been exhuasting and difficult, but I have grown in ways I never would have. You can do this. It's not a coincidence that Ella was given to you.

Good luck! -heather

Hi ,

My name is I am new here too. Our four year old was dx’ed

with Asperger’s earlier this year. I feel similar to what you wrote. It can all

be very overwhelming and confusing. We too ask ourselves what is Asperger’s and

what is misbehaving. For us it’s very exhausting and very trying at times. Some

days are great and others are very difficult. The tantrums are extremely

difficult to deal with. Ella has been known to throw two hour tantrums. It ends

up feeling like survival of the fittest, who will outlast who…. We do our best

to not give in however it is not always possible and we give in.

We have relatives telling us it’s our parenting. It really

hurts our feelings because it ends up feeling like we don’t have support. We

know better but it is upsetting to realize others who are not there 24/7 think

it is just our parenting. We have a 22 month old who is very different, especially

in regards to discipline. I can just look at him and he knows it’s time to

shape up. Ella doesn’t get it, it’s all part of that social thing… We are still

learning as we go.

Right now we are

learning about the schools and truth be told we are nervous about sending her

to school. We also are having a hard time about insurance. I have been

searching for help and I do have a friend who is helping me see what is available

but it is time consuming and a lot of dead ends. From what I understand it is

all how they code it to the insurance company. I would like to bounce ideas and

such off one another. Are you here in the United States? I am in Alabama and

not finding too much in my town in the way of help.

Try to stay positive even when it seems hard, one thing that

helps me is when I get frustrated I always think of something funny Ella has

done and it helps better my mood when I am feeling challenged. Have a happy new

years!!

To: autism-aspergers Sent: Friday, December 30, 2011 9:04 AM

Subject: New here!

Hey all. We haven't had a diagnosis confirmed. They have firmly diagnosed her with expressive and possibly recessive language disorder and SPD but said they think they will end up with a mild aspergers diagnosis. In some ways I feel a lot better because I can now understand where my child is coming from. But at the same time I am very confused about what the differences between all these things are and how to know when she's just misbehaving and when it is related to this stuff. She is 4 and a half. All of this seems to have gotten worse in the last year and a half. Other than the speech she seemed perfectly normal in 2009. How can I tell whether it's Aspergers or just SPD and the speech? She has severe tantrums where she just goes into this rage and cannot be reached no matter what you do. And they can be short or last 35 minutes or more. But then there are days where she can be sweet, seem to understand you and be okay and we

wonder if we are dreaming up these problems. Those days are not frequent but still. She says she likes school but won't talk about friends and won't communicate with the teacher well. Will pee in her pants rather than tell them she needs to go potty. Doesn't answer direct questions. I'm at a loss. But I know with just the SPD diagnosis they won't help her at school and my insurance may not pay for her therapy. Any suggestions?