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 - 10:41pm

Hang in there Wendy. I wish I had a lot of words of wisdom for you but I don't. I just started this journey as well......son was just diagnosed in December. To me, the diagnosis was two-fold: 1) relief - I finally had a name for all of my son's issues and a direction to go in and 2) terrified - I was terrified at what this meant for my son and our family.

I really like Katherine's (I think it was Katherine's) analogy of the hurricane.....so true.

As for family........forget about them for now....you can deal with them later.....if they are not going to be supportive then find others who will be......look for a local support group. Check out your local school district and their PTA - see if there is a group of parent's of special needs kids. Check with your states autism society - even some yahoo groups will meet off line - the parents in the waiting room of therapy appointments (like Tina said)......you are not alone, we are out there.

I too see a therapist for myself......it helps to have a totally unbiased opinion sometimes.

((hugs)) I wish there was more I could say. Take care and hang in there.....we're here for you.

Christie

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iVillage Member
Registered: 03-25-2003
Fri, 06-23-2006 - 11:00pm

Wendy,


(((((hugs)))))) to you.

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iVillage Member
Registered: 05-16-2006
Mon, 06-26-2006 - 8:31pm
Breaking it to the family was hard for me.
We actually keep it to ourselve and people who are regulars in our lives. Cause people always ask if I'm sure if ds has PDD? Come on already, I didn't sign up for this when I got pregnat?!
Use caution and just know you'll do what's right.
We all have been in that dark place. Remember, grass is always greener but you'd never give up your child.
Have faith.
iVillage Member
Registered: 07-24-2003
Tue, 06-27-2006 - 11:04am

(((Hugs))) Wendy. My daughter (almost 4) was dx'd with pdd-nos last fall. We had 3 evaluations all together and after the 3rd (same response from all 3...she's ASD) my husband stopped at a store and bought a large bottle of Jack Daniels. When I asked him what that was about he said "I just feel so alone. No one listens to me and I think there's nothing wrong with her."

I'd had my breakdown after the first assessment. I'd never wanted to do development evals, but it's standard for children with the endocrine problem she has. I'd tried to put my foot down because I have my own uncomfortable past with schools and this type of evaluation and I didn't want my daughter labeled so early in her life. However, my husband really really wanted us to go through the process. At this point I don't understand what he expected to hear. In the end I agreed for his sake, made the appointment and took a list of behaviors that I'd noticed and wanted reassurance about. My husband honestly thought I'd get reassured and didn't object to my list. Instead of reassurance though the doctor congratulated me on being so articulate about the issues and bahaviors I saw and told us that our daughter was ASD, but before he went further with labeling he wanted us to see a child psych about behavior management. I hadn't been ready to hear that although I knew all was not right. My DH, apparently, didn't hear it at all. 2 evals later he decided I was somehow getting off on the "specialness" that having a "special" child provided and I was manipulating the doctors by cherry picking the information I shared and no one was listening to him.

By that time I was so deeply depressed (and, yes, alone) that I half believed him. I started seeing a shrink with the stated reason being that I wanted to be assessed and I wanted him to determine if I was the kind of person that was distorting information in that way. Because, honestly, I didn't think I was, but I didn't know how else to find out. I'm still seeing him for depression and it helps.

The only people I've talked to about it so far are my MIL, my dad and my sister. My MIL is very level headed, my dad had been through similar uphevel with me, and my sister has a son who is 10, and was very much like my daughter when he was younger. My MIL set out on a course of research to prove that there was nothing wrong with her granddaughter. My father became determined to convince me to do everything exactly opposite to the way he did them. And my sister is dealing with her own issues over whether she should persue an evaluation of her son against the wishes of her husband.

My whole point here is to share my own experience and let you know that none of the feelings or reactions you're experiencing are horrible or wrong. There is grief here for the child you thought you were going to raise and fear for what is coming. Your family doesn't know how to react or what to do for you. If your son had a broken leg they could send a card and a gift and come by to sign the cast. However, HFA is something else and they don't know what to do for you or your son. If you need them, tell them. Whether you said you didn't want to talk or not in the letter, they may have gotten the idea from the format. People find it easier to help if they know what to do. For myself I just asked that everyone stay away from the subject for now. We have one more eval with the premier group in the area late in July and I will re-address everything then. Until that time my need is less help ;).

(((Hugs))) again. These women give me hope that this is a phase that will pass.

Mary

iVillage Member
Registered: 06-30-2003
Tue, 06-27-2006 - 2:25pm

Recently, I just gave up all of my friends who have "normal" kids. I need to limit the number of people that I have to try and educate about autism spectrum disorder. I get the same reactions over and over again.....

1. Bill Gates has Aspergers.
2. He seems fine to me.
3. I don't believe in labelling a child.
4. He just never learned the meaning of the word "no"
5. Have you looked into medication? I mean, like Ritalin.

Those are the things people say and I don't want to explain it over and over again. I'm only really happy when we're around family. A few people at school get it, but not really. If I could, I would homeschool and I think it would take away a lot of the stress we go through during the school year.

iVillage Member
Registered: 11-12-2005
Tue, 06-27-2006 - 3:54pm

Wendy, I'm here to tell you that I am not one of those in the "happy/blessed stage" I am nearly always pulling myself out of that dark place of "why my son, why does he/we have to go through this"? My ds is 9 and dx with AS - since Jan. I think it will be quite awhile before I am truly grasping this whole thing.

The family thing is also another issue I'm right there with you on. I have issues on so many other things that I hated to tell any of them! But this is reality and we have to deal with it. I honestly don't expect a lot of support from them until I myself am more comfortable with the whole thing. Why should they know about Aspergers? They're not the ones that have been online day and night for 6 months and getting books at the library and constantly reading about it. I have been doing that. They have their own lives to deal with and if I did need sometihng from them I think if they understood about Aspergers and I came to them asking for some help they would give it to me. I would suggest giving your family a break right now - its' too new for you and if you do never receive support from them - what then? Are you going to obsess about that over getting your son the help he needs?

You need time to process it all and give yourself a break for feeling the way you do. You also do need to get some sleep. Your son needs a well-rested mom right now and you need to be well-rested for you. You also need to find comfort in knowing that there is tons of help out there - you may not know where any of it is but after a good nights sleep if you get on the internet and research -you WILL find it.

This is also a good place to come as often as you can - reading posts from people who are going through the same things I am going through have helped me more than words can say. This is a supportive, informative and comforting board.

My prayers and thoughts are with you - you are not alone Wendy.
Jane

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