family issues need help w/thoughts

iVillage Member
Registered: 04-17-2006
family issues need help w/thoughts
16
Fri, 06-23-2006 - 12:41pm

Hi,
We were dx with HFA 6/13/06 (ds 4 yo). Tho I was not surprised i was still shocked and dh was very shocked. We've been on an emotional rollarcoaster since then and am awaiting the official report in the mail. I know most of you who post here are at the we're happy/blessed stage. I'm not. I'm in a dark place and i find it hard. of course if I could get sleep it would help. what I need help with is how my family has responded. I told my mom and my father in law in person but I couldn't stomach saying it three more times to our respective siblings (me-2 brother's, dh-one brother) so I sent a letter. I got some ideas from here from Debbie (Isaac's mom). I never said in the letter that i didn't want to talk about or i found it hard to talk about it. I just said this is what we've done, this is what he's been dx'ed with, this is waht autism is and this is how you can help (pray, be patient, be compassionate). Do you know that only my one sis-in-law that I work with called me and acknowledged it? She did this after 4 days of having the letter and my mom suggesting she call to show support. My dh isn't that surprised since our families haven't been supportive over the past 13 years of our marriage. Me, I can't seem to stop thinking about it. Am I focusing on this so I don't focus on autism? When I'm not thinking about family and feeling no support and feeling so isolated and feeling angry at them (and sometimes at the world), I'm thinking about autism and what will we do?

How do you get to be happy again?
Wendy

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iVillage Member
Registered: 03-26-2003
Fri, 06-23-2006 - 1:10pm

Hi Wendy,

Maybe it seems like lots of people are in a happy place now but I know for myself I have been in that dark place many times. Particularly right at the beginning when the kids were first diagnosed and there have been times since as well. The last couple years were particularly dark for me and I pulled myself away from all my friends and outside activities because it was to depressing and scary to do anything with anyone. Nearly lost my marriage too. Also have lots of issues with my husbands family. My mom is much more supportive or tries to be. But my inlaws have been a real issue for us, particularly for my DH.

You are right. You can't neccessarily count on them to be your support. It is nice when you can but some families just aren't like that. If they haven't been supportive for 13 years there is no reason they will start to be now. That is unfortunate but it is the truth. We are just coming to that realization with my inlaws and it is a bit cathartic. It still rots but we just don't count on them anymore. When they are there, wonderful, but we don't ask. We have come to the realization that they have issues of thier own and they are just not the ones we can count on.

However, you do need support and you do need to take care of yourself. I realize I say this alot but it really has saved my life. I started going to a therapist about a year ago to help me deal with all this stuff. You may want to consider doing that yourself. You need to find some way to take care of yourself and get the support. Having a child with special needs is not easy and is horribly stressful. If you dont take care of yourself it is going to show itself some how either phyisically or emotionally.

I hope you are feeling better. I know Paula can back me up on this. We understand the dark part, the emotional rollercoaster. I am sure most of the moms here can. Eventually we learn to laugh again and to enjoy life. You have to at some point, but the hard stuff still sneaks in and rears its ugly self. Usually at night when you are trying to go to sleep or when there is some extra stress of some new thing. That is why we are all here. That is something we all have in common. If we didn't experience the dark feelings and the tough times we wouldn't need a board like this one.

Renee

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iVillage Member
Registered: 11-07-2004
Fri, 06-23-2006 - 1:50pm

I am happy, although overwhelmed. I think what has made me happiest is now knowing I wasn't losing my mind when I felt something just wasn't right. I also feel blessed in a sense because I know it could be worse. High functioning autism isn't the end of the world. From what I have read, our children can lead happy normal lives with our help along the way. I also guess I am happy because I think we are fortunate to have found out so early on, meaning we have plenty of time to help our son.

As far as the family situation, you can't be bothered with this. I mean, as I am learning (part of the overwhelming feeling) being my son's "team captain" is going to take all I have, I don't have time to worry about others.

I wish you luck and I am sure once the newness wears off you will be in the right place.

iVillage Member
Registered: 01-16-2006
Fri, 06-23-2006 - 2:25pm
First a hug because you really need one.
Second - i don't think we are all in the happy place yet and don't feel you can't post because of that! Some days its a happy place and some days its not....
Finally and most important - It is totally okay for you to feel like you are in a dark place, but you need to mourn but not wallow. Yes I said mourn. No your child is not dead, but perhaps the future you originally envisioned will need some serious modification and that takes time.... Right now, don't worry so much about your family because its hard for them too....you likely have waaay more knowledge about this and lets face it, for most people, if you say autism, they think Rainman, not at all understanding that it is a vast spectrum and each child and their expression of their autism is very different. Take care of you and your child, the rest will either come along for the ride or get off the road....
iVillage Member
Registered: 01-16-2006
Fri, 06-23-2006 - 2:30pm
I can't agree more about taking care of yourself.....I went into therapy and i think my entire family is happier and handling this so much better for it.
iVillage Member
Registered: 01-19-2005
Fri, 06-23-2006 - 2:49pm

Hi Wendy,

I want to say that feeling like you do, especially when the dx is so new is okay. Also, I still think about autism all the time, but it is starting to become just part of my life rather than a curse. But this has taken 2 years to get to this place. I'm not sure I'd say I am "happy" about it but accepting and not bitter. I'm learning to see things in new ways, but it hasn't been easy. I still mourn my imaginary perfect child. Not that I am proud of that. But I've started to separate that "dream child" (that really, nobody has) from my real child. And I do still have hopes and dreams for DS too.

And I know the dark side feelings too. I still have them every once in awhile, for me they seem to rise out of either stress and not taking care of myself (like Renee said) or from my fears of the unknown. I still have a problem with those fears. I try to make myself focus on the present as much as I can, but I can work myself into a panic worrying how Eric will be when he is older (he is 4 too, but was dx at almost 2).

I just want to share with you something that happened to me. When Eric was 3 he had a big regression. I also found I was losing patience with him, then I would hate myself feeling I was not a good mom. I found myself sometimes throwing things and screaming (unlike me, and I never did it in front of DS). I felt sort of out of control.

I went to my ob/gyn and demanded anti-depressants. He looked at me like I had 2 heads. He said "You have been through infertility, stage one cancer, (and other things too personal to say here), and you never got depressed. What is wrong?" So then I explained about Eric and he told me he had a special needs child too. I never knew this. He really opened up and said if I really wanted the meds I could have them, but that he felt what I needed was to find other parents with children like mine. That had helped him. He also wanted me to have a complete check-up and work-up to make sure I was not clinically depressed or some other biological reason. (Not a bad idea, BTW, if you are feeling really low)

Well, turns out there was something biochemically amiss which we addressed, and that did help my mood. But what helped most was getting support (in person, in "real life" as well as online) from other parents with ASD kids. I have a tight knit group now of 3 moms with kids like Eric about his age. They are my lifeline.

Also, anti-depressants can help too if your doctor feels they are right for you. All the women in my family take them, LOL! Many people here do too, my doc just didn't feel that was the solution for me, and it turns out he was right (and he is not a "Tom Cruise" type) he was just reacting to the difference he saw in my ability to cope with this problem, vs. other "worse" things that have happened. But to me, this was the worst thing that happened, I thought at the time, at least. I feel differently now.

Maybe you've seen that essay "Welcome to Holland" which is nice. But you don't feel that way for quite awhile, in my experience. It takes time, different for different people. Someone recently sent me a version of "Welcome to Holland" called "Welcome to Beirut" which was less rosy and more like I think I have felt.

I live in Florida, the hurricane magnet of the universe. Maybe there is an analogy here somewhere. Getting the dx is like being hit by a Cat 4 hurricane. You'be been watching the weather and radar, you knew it was coming, but you still weren't prepared for the reality. Right now you are in the midst of the storm. You don't know if your roof is blowing off, the power is already off and outside you hear weird sounds. You're just holding onto your baby and DH for dear life. But the storm will end. You'll eventually get power back, but you might have to wander around for awhile with a flashlight and candles. It will be hard. You and DH will get mad at each other from cabin-fever being stuck in this rough place together. But it might make you stronger too.

Then one day, you'll wake up and realize the experience of Hurricane ASD is just part of who you are and the things that have happened to you. You are not thrilled you had to go through it, but now you have a great hurricane kit, you've bought a generator, and indestrictible hurricane shutters. Now you know what to expect. You know which weather man is the most accurate (your child's neuro, psych, ST, or OT) and hopefully you'll have the support of the other hurricane surivors there with you. They are the only ones who understand, really.

I hope I this made some sense. I got carried away. But the analogy spoke to me.

Sending you some TLC and hugs. Hang in there.

Katherine

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Registered: 03-28-2003
Fri, 06-23-2006 - 2:51pm

iVillage Member
Registered: 10-03-2004
Fri, 06-23-2006 - 3:11pm

Well, big (((((HUGS)))) Finding out is very much like getting punched repeatedly in the stomach and is not recommended for a good time. And while I love my son and being his mom is a terrific and wonderful thing, I do NOT love his autism and I am never happy about it. But I do love him, I continue to be willing to raise him and address every problem that arises and find him the help he needs as we can figure out what that need is and how we can best help him.

The dark places never are completely gone for me, not at all. Sometimes I spent periods of time lost in that pain and fear again. But there is life to be lived and so, so much work to do at all times. And life is too short not to enjoy living as much as possible as often as possible. We take vacations, I call and chat with my friends, my dh and I have a weekly date night (essential, highly recommended, BTW). I prepare very healthy food, we all get lots of exercise, we are careful about sleep. I may also go back into therapy myself just to get that extra support, I've been thinking about it for a few years and may be ready now. And I am considering very harsh and specific blackmail to force my dh back in therapy again as well...

We are dealing with what we cannot just wish away. And if I could wish autism away, yes, I would. Yup. The pain does return, over and over, but the reality is in front of us 24 - 7 and when you are working hard and better yet, getting results, well, what is the song? "I haven't got time for the pain"? Sorta like that.

And THEN I cannot effectively explain the size and unbelievable sweetness of the joy that comes from real growth and accomplishment by a child with such difficult struggles. The challenges are huge, the fear and pain real. And yet they, our children, are the ones with the real pain here, and in spite of that my son is so brave and smart and loving, working so hard --- and his growth is the most beautiful thing on Earth that I know.

You will know joy that passes human understanding... And that helps. Oh, yes, it does.

Welcome here, any day, with whatever degree of light or lack thereof.

yours,

Sara
ilovemalcolm

iVillage Member
Registered: 01-16-2006
Fri, 06-23-2006 - 3:31pm

And THEN I cannot effectively explain the size and unbelievable sweetness of the joy that comes from real growth and accomplishment by a child with such difficult struggles.
______________________________

Sara is SO SO SO right here! Today, my DH called me so that I could hear my DD singing in the background. She was singing We are the Dinosaurs....i almost cried at my desk... ok so it sounded more like we ah dine-so's mahchee marchee - but i knew she was singing we are the dinosaurs, marching marching.... the littlest things will make you light up with joy!

iVillage Member
Registered: 06-25-2003
Fri, 06-23-2006 - 8:51pm

(((((((((((((((Wendy)))))))))))))


Sorry to chime in so late to say I completely understand and to

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 02-20-2001
Fri, 06-23-2006 - 9:14pm

(((((Wendy))))))) I was were you are a year ago.

 


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