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Name: Heidi
[ Original Post ]
Diagnosed ADHD/Asberger's/ODD, given prozac and concerta...but no resources or things to read, or suggestions on what we do now. Our insurance doesn't cover wrap-around services, we make too much to get assistance, and can't afford to pay out of pocket. What can I read? What parenting tips exist? Who should I call, or contact? Are there babysitters out there even equipped to handle 3 kids, where one is a toddler and one is autistic? (We've never felt OK with anyone outside of our parents watching our kids, because of how intense it is...but that needs to change, and fast.)

I am first and foremost heartbroken, because even though he is high-functioning (the school has advised against putting him in the autistic class, but he clearly needs an Individual Edication Plan if he's going to stay in the general population and survive), I can't ever picture him driving a car, holding a job, etc...and I don't understand how or why this happened, and I want my sweet little boy back...not this goofy kid who squawks and sucks his toes and destroys things and has zero common sense, who seems to have taken his place. It's not fair.

I'm angry because now I feel like I have to spend the rest of any talent or potential I had for my own life, just helping this person get by, and even then it may not come to anything because he can't ever be independent or productive...so it's two wasted lives instead of one. I'm angry that my other two kids are going to have less opportunity, less resources because of something that isn't their fault. I'm angry that I have zero help from family members, and no social life, and no break, ever because 2 of my 3 kids (one is a toddler) need 100% supervision.

I'm scared because we're making ends meet now, but don't have the extra resources to start any kind of fund that assists this person, should we not be around to help him anymore. I'm scared of expecting his brother and sister to take care of him. I'm scared that if I leave him even for an instant he'll hurt or kill himself by accident because he doesn't know any better.

I feel guilty because sometimes instead of loving him, he creeps me out with his behavior...I mean, I'm really repulsed. And if he can't count on ME, than who? I feel guilty because of all these feelings I have. I feel guilty because sometimes he just drives me nuts and I wish I could send him away. I would NEVER hurt him and know to call a professional immediately if I ever get to that point...but...I could sure use a break sometimes, because it's all me. Husband (boy's stepdad) at least has stopped wanting to spank or yell, but has distanced himself to the point that I'm pretty much 100% responsible for this child. It's rough, I'm unhappy (possibly even depressed), and I dream of running away...and all of this makes me feel guilty. I feel guilty because my oldest gets short-changed because she's the only one who's not a toddler or has no special needs, and she gets less attention -- she is angry with me a lot, mean to her brother a lot, because she can't understand why she has to do her homework without any pomp and circumstance, but with the autistic child I have to go overboard with praise and reward, just to get him to get up, get dressed, bring his homework home from school...i've tried to explain it to her, but she's still really bitter and that hurts me.

ANY words of advice...anyone sharing their feelings or experiences...anyone giving me tips about who I can contact (keeping in mind that our insurance sucks and our funds are limited)...would be greatly appreciated. I guess I need to know I'm not a horrible person for having the feelings that I have about this.
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Name: lisa | Date: Jan 5th, 2006 3:52 PM
Dear Heidi,

I read your story this morning and I can relate to everything that you are feeling . However, I feel sorry for you as well. My child is also autistic, mildy mentally retarded and has ADD. You know, we never plan for these things to happen to us. They always just seem to happen to someone else , right? You are like me in the fact that I have felt or can certainly identify with what you have been feeling, the anger, resentment, frustration, depression and loss. Those are all normal parts of the grieving process and I know sometimes we tend to feel sorry for ourselves.

I to am a single mother with a father that is in total denial of our child's disabilities. So, basically I am forced to go it alone. My mother does help me a lot. Thank God for her.

I spent a lot of time in the beginning confused and angry. I would cry a lot. I was angry for God giving me this child because I thought she deserved a better parent. That somehow , I was failing her. Boy, was I wrong. I took a long look in the mirror and realized that I have my child because I am susposed to. Is it hard ? Yes. Do I want to run away and never come back sometimes ? yes. But do I love my child more than all of that ? YES.

I now have come to understand that I have my daughter for a reason. That I am a good mother because despite all her problems, I love her. I would do anything for her. I will never let her quit and I refuse to let her feel sorry for herself. She is a sweet little girl who is very sensitive and caring. She is happy despite all her issues because she is totally unaware there is a problem. Maybe she is the lucky one. So many of us complain about the most petty stuff in life and yet if you notice people or children with disabilities, they are usually very happy..

I don't know if this will help you , but it worked for me. I joined a support group for children with disabilties in our area, got in touch with our local county for services such as respite care. That is where people either volunteer or are paid from the community to "babysit" .

One of the biggest issues I have had is that my daughter will not stay at anyone's home other than ours or her fathers. She has severe seperation anxiety and refuses to sleep anywhere other than those two places. It is very frustrating. I have attempted babysitters and I usually end up so worried about my daughter, that I can't enjoy myself. So, I get my friends with kids to keep her, that way she has someone to play with and she is much more comfortable in an environment with a family she trust.

Good luck to you. Please remember that you are not alone. I thought I was in the beginning but you would be suprised how many people have situations just like ours. Just like this chat room, it can be comforting in knowing that there are others with the same issues, etc.

Please don't feel like you have two wasted lives, that could be no further from the truth. You and your son were put on this earth for a reason. Everything has a purpsose. Maybe you should look into some counseling. It might be very helpful for you to talk to someone that doesn't know you and is not related to the situation. That way you can get help with coping mechanisms and vent your frustrations without feeling judged for it. It helped me.

Stay strong and remember that knowledge is power. The more you know and understand , you can help your older daughter understand. There are some really good books out there for Autism that explain things in basic terms. I have read several which have also helped.

Take care 

Name: Heidi | Date: Jan 5th, 2006 4:16 PM
Thanks very much for your reply. I am unable to seek counseling because I can't get a sitter and because even if I could, the co-pays for all of my son's stuff are hammering me flat and I can't afford a second set.

I am not a single mom. I have been before, but am not one now...I will say that since my son's issues have become worse and the diagnosis known, things with my husband are strained and as far as this child is concerned, I'm all he's got. My mom won't watch all 3 at once except in emergencies, and my in-laws will only watch the baby about once every six months...so any hopes I had of "the family" or "the community" stepping up to help, it's nonexistent. My friends (the ones here around me, not my long-time friends who all moved away) seemed to evaporate once things started getting intense with the kids, last summer. So if this chat group can offer me anything, it'll be the knowledge that others understand...THANKS for that! 

Name: lisa | Date: Jan 6th, 2006 7:24 PM
Dear Heidi,

If I upset you , I am sorry. I was trying to be positive , that just seems to be the only way I get through. When I read your story something inside me was very touched because it reminded me so much of myself. As I stated before, I can identify with every feeling you are having. I have felt them as well . Like I said yesterday, I do want to run away sometimes. But I just have to be in faith that things will be okay.

In the beginning, I was desperately searching for any kind of help. I read books, spoke with teachers, doctors, etc.
That's how I found this chat room and it was a lot of help for me. In the beginning, I would just read others stories to see if anyone out there was like me and my child. It helped me from feeling so alone .
Since then I have come to enjoy talking with people and getting advice for myself.
I have to say that when I joined my support group , things got easier. We have taken a break for the winter holidays and I have really missed it.
Take care and good luck to you and your family. 

Name: jackie | Date: Jan 14th, 2006 2:51 PM
HI, you are NOT horrible...totally normal feelings. I am a special ed teacher and also an ABA (applied behavioral analysis) therapist. I work with autistic kids.
First, he SHOULD have an IEP, it is the law. PLEASE contact your school's child study team and ask for an evaluation. They should pay for all of this. He should also get paid services through them. Emphasize the hardship this is putting on your family, some districts also pay for family counseling to deal with this. I also encourage you to go to a support group in your area. I live near NY and there are tons, which usually meet once a month. I see how this helps the families. Anyway, that would be your first step, getting him an IEP through the child study team. Good luck 

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