I dislike and resent my DD
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Anonymous
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I would start with your PCP and have a physical and share your emotional state with him, too. He most likely will recommend an anti-depressant, which can take a few weeks to fully kick in. At the same time, do you have any relative or friend9s) that you could share your need for a break with and see if they could give you some regular time off - even an hour here or there that you knew would be yours might be a great equalizer. If there is a Dad who could be involved, try and see that it happens to give you a brake in care etc. Depending upon where you live, I would also contact agencies serving children with special needs and possibly your local Dept. of Social Services to see what resources there might be for you in terms of respite and counseling on a free or sliding, fee scale. Are there any support groups which could give you an honest outlet for your concerns and frustrations. Finally, try and step back and see if there is a particular time of the day that is hard with your daughter or activity so that changes might be made. For example if bath time is a battle, maybe do it in the morning first thing or only every other night. If meal time is a battle, consider just making things she wants to eat during the work week. Also, do you have too many or too high expectations for her which can happen at any age even before school starts. If so try and talk about them with someone who knows your child - early intervention person, therapist or her teacher to put things in better perspective. BUT above all else if you really feel you are at the end of your rope, then call your local DSS and ask for assistance and even possible temporary foster care placement till you can figure out what is best for you and your daughter. |
Anonymous
| I think those of you advising OP to put her DD into foster care or up for adoption haven't thought about the fact that OP has another child. What does that other child learn when she sees her sibling sent away because she was bad (which is how she'll see it). I'm actually shocked that people are suggesting this. There are some really helpful suggestions in this thread -- therapy for herself and possibly meds, respite care, a behaviorist for her DD -- that she hasn't tried yet. |
Anonymous
Nobody seems to be suggesting foster care/adoption as a first choice. |
Anonymous
Read through the whole thread -- this is not true. It should not be an option period. Not only would it be destructive to the DD herself, but it would also be devastating to her sibling and, I believe, to the OP as well. |
Anonymous
| Do you have friends who have SN children? Sometimes the greatest relief is to be able to talk to a friend who understands from the inside out. I know I felt so much more connected to the world, more happy and understood and supported, less alone, once I had a few friends who've been their own travails. They get it, and we can even hang out with each others' children and not feel judged. |
Anonymous
| How is it going OP? Have you been able to get any additional supports in place? |
Anonymous
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Dan Shapiro is great at supporting parents as well as kids. If you haven't met with him yet, consider it.
As a parent with a child with a significant developmental and intellectual disability(will never live independently) I am saddened to read how many parents would have aborted their children if they had know about their child's diagnosis prenatally. Trust me, I GET that it is hard...I live it every day. I am no super mom or saint. I lose my sh*t on a daily, sometimes hourly or even quarter hourly basis, too. Parenting my SN child is the hardest thing I have ever done and likely will do. And I do sometimes imagine how easy my would be if my child was 'typical' or if he had not been born. Do I mourn the life I thought I would have? Of course. Its normal. Do I wish my life was easier. Damn straight I do. I think our society has sent us all the message that we control our own destiny a lot more than we really do and when 'bad' things happen like car accidents, brain injuries, strokes, birth defects, cancer, etc. we feel 'cheated' because we 'did everything right'. Or we feel resentful because this "wasn't supposed to happen". Especially in affluent areas where many people fix their problems by throwing money at them, when we have problems that no amount of money can fix, we feel all the more frustrated and angry and then imagine things we could have/should have done to avoid the problem occuring in the first place...such discovering a disability prenatally and preventing that child from being born, thus, eliminating the "problem". But folks, don't you see how that attitude that says "This is so hard that if I had a choice, I would rather my vhild was never born" contributes to setinng people up to feel even more frustrated and more disappointed with their lives with children with SN? You know, one day, maybe in our lifetimes, maybe in our childrens', there WILL be a prenatal test for ASD, ADHD, etc. like there is for Down's now. There will likely be prenatal tests for cancer risks and risks for other diseases, like high cholesterol or other disabilities. I really do fear where this thinking will take us as a society. I can see how the thinking now often goes from being one of "quality of life of the child" to "quality of life of the parents and siblings" because the children and adults with Down's really do have a pretty high quality of life...at least they believe that they do, anyway, and isn't that all that really matters? And if people abort 95%+ of babies with Down's who have a high quality of life, then what that really says is that its the parents who don't want to sign up for kids that might be too much trouble or cost too much money or might ruin their ideal lifestyle aspirations. All I can say is with this kind of society looming ahead, I am just grateful I was born before this kind of thing happens because I am certainly NOT perfect. I may end up with diabtetes or heart disease as I have had high cholesterol since my 20s. I may get cancer as my parents, grandparents and 2 aunts have. I have ADHD inattentive. I am myopic. I am also dyslexic. I'm just so grateful that I am here and no test existed during my mother's pregnancy that made her not want to have me because I might ruin her life or by some misguided idea that my life, with these challenges, would not be worth living. Life is hard. We can't control everything. We never will control everything. We can try to cull the unpleasant out of life, but we will always, always fail. Yes, some people will always experience much pain and suffering and frustration in their life while others enjoy a a much more calm, predictable, rewarding and pleasant life. And not only because of their "choices" or their attitude, either. Some people just get dealt a difficult, challenging and sad hand in life, no matter what they do or what their attitude is or how they manage it. it sucks, but we all need to accept it, deal with it, help those who are struggling with more challenges. But most of all, I think we need to stop thinking that the solution is to breed out people who are challenged and challenging. |
Anonymous
No, I don't think it contributes to that because I think it is a reality for many, many people. I think pretending that it isn't, is more harmful because it sets people up to have to be saints and when they can't be, they are made to feel worse by people like you. Not everyone is going to be able to deal with that even if they are able to break down hourly, daily, weekly. That is why there are still boarding schools for children with special needs in this country that are filled each year. That is why there are parents who choose adoption when faced at birth with a child who doctors tell them will have significant needs. |
Anonymous
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There is a huge difference between quality of life for the parents and for the other siblings. You've lumped them together but they are two very different things. I know this having been a sibling of a child with SN. If you are a parent and you know you are carrying a child with a profound disability, I would never criticize you for considering the welfare of your other child and terminating the pregnancy. This is especially true if you already have a child with SN and you are at your limit.
If I had the gene for a terrible disease like Huntington's and I could select for children who don't carry the gene, you better believe I would. I don't buy the slippery slope arguments. And I would never judge parents for this very private decision. Our children shouldn't have to take one for the team. If bringing another child into the family would severely impact their future, their lives, I think terminating the pregnancy is absolutely an option. I say this as the parent of two SN children, whose SN are absolutely the result of genes. I would never have terminated my own pregnancies. But I know how hard it is and I would never judge others who make a different choice. |
Anonymous
+1 |
Anonymous
Well, have you thought about how the normal sibling feels on a day to day basis? My kid's bff has brother who is SN and she constantly complains about him, about how much time he takes up, and how her parents don't have any time for her because of him. She is very depressed about it and has told us that she wishes that he'd just go away. And she acts out on it too--hitting him and trying to get my kid to hit him too. If this kid's mom (OP) is suffering, think about how the sibling might feel. He/she is probably suffering too. I think if his/her sibling needs to be institutionalized sharing why the decision was made would make it clear that it isn't something that would happen to her. We also have friends who have institutionalized their sons because they were a threat to their normal daughter. Would you recommend that they not and have them physically hurt their sister? |
Anonymous
Do you have a child with SN? Because your first example is incredibly offensive to those of us who do. You are suggesting that in this family the child with SN -- not violent, though his NT sibling apparently is -- should be sent away because the DD is depressed. Of course, the family has a situation to deal with and they need to attend to that daughter, but the idea that the problem is the mere existence of a SN child is the problem, and that existence needs to be wiped away for the sake of the sibling, is really offensive. And I'm the one who posted about how we shouldn't judge parents who terminate pregnancies. This is a live child. And I won't even touch the use of the word "normal." There are children who need to be in residential facilities for a whole host of issues if they can't be treated as outpatients. Your last example is probably one. But that is still not the same thing as putting a child up for adoption. I stand my post that making the troubling sibling "go away" PERMANENTLY can be really damaging to the other sibling. Especially when the parents have other options they haven't tried. I was the NT sibling of two SN kids. If either of them had been put up for adoption it would have been seriously traumatic for me. I also have a SN child and an NT child. You have no idea what you are talking about. |
Anonymous
I could have written your post OP. Give it time. My son was exactly how you described your DD, and at age 4 he started coming around. We have had him in major therapy for two years. Speech, OT, physical, as well as early intervention pre school. We can just now at age 4.5 go out to eat (at a child friendly restaurant) and do all the other things we couldn't before. So I would say to give it some more time. Be kind to yourself OP, and try to remember that she can't help how she is. Get some therapy for yourself. Even if it's just venting to someone for an hour a week. Also, don't feel bad about leaving your DD with a sitter and taking a weekend away. Good luck. |
Anonymous
sorry to offend...I didn't know what to call the non-SN child...is NT the right term? Anyhow the SN brother is not violent, but he does do things like break toys by throwing them against the wall and uses his body weight to crush his sister. I wouldn't say the sis is violent either. I was mainly trying to say that she is frustrated by the situation. I just wanted some compassion for the NT child and what she has to deal with. Yes, it's hard for the parents, but the siblings suffer too. |
Anonymous
| I don't think you need to lecture parents of kids with SN about the challenges of NT siblings. We are already well aware. Your post was not helpful. |