So I Got My "I'm Not Crazy" Papers... Now What?

"My husband tells me that it's up to me to learn what we need to know and to implement it... just fill him in later. My mom also lives with us and her patience level is nill. She expects my kids... all of them... to respond with obedience the first time every time. I keep telling her she's living in a dream world."

IMHO, the other "parents" in your family need to step up to the reality/responsibility plate.

If you want to be, or due to circumstances need to be, the point person on this, fine, but your husband shouldn't just dump it on you (it's clearly too much and hello, isn't he one of their parents too?).

And ask your mom when has she ever, in her WHOLE LIFE, changed how she behaves because one person (who was not even her actual mom or dad!) told her to stop or start or change?!? (This was an enlightening question in a parenting class I took once ;) ). Certainly it sounds like her ability to listen to you *and your families ***NEEDS*** * isn't affecting instant useful change. If *grownups* (you, me, her) can't (and we *can't*) change from one directive, kids certainly can't. ("Reality is that which does not change, no matter how much you want it to.")

We figured out on of my brothers was high-functioning after we were all adults. 'Sure did explain a lot of things that happened growing up ;)!! (SIGH.) Several of us in the family liked Temple Grandin's first(?) book, maybe called "a cow's-eye view" (I forget if that was the final title or the working title). Temple Grandin is high-functioning (and female--useful to your situation!) ... and while I happen to suspect that a lot of what she presents as "universal" experience for autistics is not universal, her views are very informative and she has been deeply involved with autism organizations and presents a good swath of the experiences she has heard from others as well.

1) Your daughter, your sons are no different on June 5th than what or who they were on May 14th. You have to remember that, You just have a new label, that's the change. She's still the daughter you've been living and laughing with, your sons are the same. You've changed to see if you can reverse or find a 'cure' for her autism.

2) I think it would help your two oldest boys to be able to talk to a family therapist. With all of the attention you are giving your daughter, there are apt to be issues and they need to talk to someone who's impartial, who can hear and appreciate their concerns and then help them understand the reality of the moment. Autism isn't just a diagnosis of an individual's behavior, it's an affliction for the entire family, trying to cope and adapt to make the most of your collective lives. So get a family therapist so you can all go togther, so you can all talk with someone who will be able to listen without a filter over their ears.

I wish you well, all of you. Make some just you and the boys time, especially the older boys. Then carve out a small chunk for you and your husband, you'll need time to spend together, to re-charge your batteries, you'll have to depend upon each other more than the average couple while you travel this bumpy road, so listen to each other, hear the joys and the fears. your life is a juggling act, only you're juggling sand.

I remember when my son was first diagnosed with bipolar disorder. I remember feeling relieved that it wasn't all in my head or that it was my parenting.(Both of which I heard for many years). It is overwelming when you have a special needs child and other "normal" children. They often do feel like they are being neglected because so much time and energy goes into the special child. The best thing I have learned to do is set time aside for each of your children so they feel like they dont have to act out to get your attention. Also its very true that children learn what they live and as you model the way to interact with your 12 year old your other kids will pick up on it. As for your husband, I remember feeling frustrated with mine when he left all the educating up to me. I felt like this was his kid too and he should learn what it meant for him to be bipolar and such. I didn't want to be the Teacher when I was still the Student. To this day (7 years later) he still doesn't know very much about our son and his needs...never been to an IEP meeting, counseling session, med appt, etc.

Hang in there its overwelming at first but it does become somewhat of a routine eventually.

I know---- I worked with families with special needs children for 40 years --- and it's overwhelming.
What to do?
take a deep breath
remember that each of your children is unique- you
don't require the athlete to be a poet - but you DO
require tht each of your children follow certain house
rules ( and you Mom is going to have to accept that
'''do it exactly as I said first time or else'''
doesn't work with adolescents, kids w/ autism-
and often doesn't work with pre-teens either-
-- time for some rules for HER, too ---
There used to be '''Sibshops''' at U. of W. --- ask around in some of the Autism suupport groups --- there are super ones in Seattle--

Blessings,
J.
aka- Old Mom

I feel your pain and frusteration. I too have a child with special needs (though not autistic) and have a niece who is autistic. When my daughter started with her issues, it was very difficult and extremely overwelming (she was in and out of the hospital). Yes this did affect her older siblings. I tried to explain to them what was going on and reached out to the school councilors to help.
First of all, you need some time to yourself to regroup (and one on one with hubby is so important to). You are no good to anyone if you are a mess(yes I know easier said than done).
Find some time a couple of times a month to do something special with the boys. I would also tell hubby he needs to step up and do things with the boys too, since you are the one spending soooo much time on your daughters appointmens.
Have you come across any support groups for you and your family? I think it would be great idea to get the boys involved with support, so they can learn to understand. They dont know any different than what they are used to, and dont understand that their sister is different.
take care and I wish you the best of luck! I know this is a very overwelming time for you. Step back and take a deep breath, one step at a time.

S.,
It sounds like you've gotton some good advice, and a little interesting advice maybe too =)
Anyway, I'm short on advice. That's probably good for you by now. It sounds to me though that you will be fine. You are or were just overwhelmed. That's fair.
Your concern for your family rings loud and clear throughout your message.
Take comfort in the fact that it did take doctors 12 years to diagnose your daughter Autism. "high functioning" has it's levels as well. He's must be very high. Which of course is good. She hopefully falls more into-and I'm sure you already are aware of this-and Autism spectrum disorder. Did they say anything about that?
Not important. Anyway, You're not crazy. So just take a deep breath, and keep doing what you're doing. Do what you have to do. I have a feeling though that your husbands dissmissive reaction may-hopefully just be a defense mechanism. He can't fix Autism. He can't fix his girl. He just wants you to hand him a rule sheet real quick.
Won't happen.
He'll come around, encourage him.
The other gal obviously let her husband go on this. That's sad. Let your husband and make your husband stay in her life. It's hard enough in the teen years.
Tell him you need help. He loves you. He'll help you. You were just in a panic and so is he. It's alot, like you said. You gotta band together in this. Your mom on the other hand. She needs to make a decision. Is she your ally? She'd better be.
Best wishes to all of you, M.

Hi there,

As I read your request, I want you to know I heard your frustration and worry about your other kids. I am a school counselor at the elementary level, and I actually run a group for students here who are siblings who have disabled brothers or sisters (ranging from downs to many kids who have autistic sibs).
There are so great resources out there for your kids.
It the April addition of "seattle child" they did a whole article on support systems in the area for sibs. One resources they highlighted was the Sibling Support Project..
http://www.siblingsupport.org/. They are a national organization that provides trainings, workshops and support groups for sibs.
Another grreat resources is the Autism Society of WA. They can provide you as a mom support but also have lists of sib's support groups.
http://www.autismsocietyofwa.org/

There are many more resources out there, but these two are a great start. I hope that you as a mom can take time for yourself, but also start to find a new healthy balance in your family for everyone!
Good luck!

First I would continue to expect every one to obey your family rules. Even your daughter because that will give her security.

The rest of what you are do is what you need to do. And tell your husband to go with you to some of these appts. He needs to show more than tell me what to do interest. Having your mom do some research might also help. Having her support you rather and just expect perfection would be nice.

And take some whining time out. Just fifteen minutes or so--you deserve it.