how do I get over my own shit to be a good mom to my extremely SN kid?
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Anonymous
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Blessings to OP, and to all the posters who've supported her.
We have a SN child and sometimes I wish his condition were more severe (horrible, I know) so that people realized what he and we are going through. We are fairly wealthy and my spouse's extended, very middle class family constantly find little ways to suggest that we are neglectful of DS or that this is all some type of cosmic payback for our otherwise having the trappings of success. We have not seen a therapist for ourselves, but there are many times when I think it would have been helpful, and I would definitely encourage OP to search a good one out. |
Anonymous
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I am so sorry OP. I agree that you need support and help.
I have three friends with children who have significant physical and other special needs. I do not know whether these anecdotes will help you at all, but they might. One of them told me, when her child was 2, and they were still dealing with multiple health crises, surgeries, feeding tubes, night nurses (and they had lots of $$ from family for help), and a poor prognosis for social and intellectual development that if they had known this is what it would have been like, they would not have had children. It was a very raw, painful, but honest admission.I know they both were in therapy for a long time, dealing with the stress and their feelings of anger, pain, confusion. i am happy to report that their child is doing amazingly well considering the early diagnosis, and now has been mainstreamed in school and though he has continued to have some health problems, his major crises and surgeries are behind him. He will always look and be different, and have challenges, but the overall picture is very different at 10 than it was at 1, or even 3. My second friend has a profoundly disabled child. She was told that her daughter would never speak, hear, walk, feed herself, dress herself or be able to even do any basic self care. This was her 3rd child and for several years she was the most exhausted, depressed, bewildered person I have ever known. I do not know how she kept going--how both of them did as her husband was equal partner with the exception that she quit her job to care for the kids--but somehow she did. Her daughter is now 12 and attends a regular school with an aide and can do many of the things that she wasn't supposed to be able to do. She will always require care, but my friend, who admitted she wondered at times "what was the point" of her daughter's life, no longer feels that way. They've somehow all formed a strong family unit, and the older siblings are incredibly protective of their sister, and they strive for normalcy as much as possible. my third acquaintance's daughter , now in her 20s, is profoundly disabled and she will remain under care for the rest of her life. He deals with it in the way he can--in part by being as much of a good parent as he can, but also by channelling his energy (passion, anger, hurt, focus) into his work (he's a writer). He travels a lot, which used to make him feel guilty, but he realized that was allowing him to come back home and be there. I hope you find some respite, and some comfort, in what is a terribly distressing and sad situation. |
Anonymous
| Op I respect your ability to judge whether you are depressed, but I don't think it's necessary to feel suicidal before you call yourself depressed. And if you are depressed as a reasonable response to a very sad situation that doesn't mean antidepressants couldn't help. It's like if you got asthma because you live in a place w terrible air quality, that doesn't mean you shouldn't get the asthma treated. |
Anonymous
| OP I think you are brave and amazing. I hope that you are surrounded with friends who tell you this often. Such beautiful honesty, I am in awe. Just know that there are others out there thinking of you and your daughter. |
Anonymous
Not pp, but is this true? When I was a kid I knew of severely disabled kids who went to other homes to live similar to nursing homes because their parents couldn't care for them. These don't exist anymore? What happens if you have a severely disabled child? I'm not trying to be obtuse, but I've wondered this. |
Anonymous
There are pediatric long-term care institutions, but most insurance won't pay for that. Most children go home and cared for at home. If they have medical needs, most insurance will pay for a home health care nurse. |
Anonymous
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OP, you are clearly an amazing parent and a deeply strong woman.
I cannot truly imagine being in your shoes. I am so sorry that you and your daughter were dealt this hand. Please do explore respite care and seek as much support as you can find. I will keep you in my thoughts. |
Anonymous
I've wondered this too....can anybody answer? |
Anonymous
| I'm so sorry, OP. I agree with the therapy suggestion and possibly a support group. I really hope something helps you! |
Anonymous
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Hugs to you, OP. My SN kids don't have anything like your DD's challenges. But, we did care for my FIL the last 2 years of his life. He'd had a massive stroke, was paralyzed on one side, couldn't toilet and descended into dementia and depression. It took an incredible toll on our emotional health, our releationship and our finances. It also led DH and I to have some brutally frank conversations about what we wanted for ourselves should we end up like his father. For me, I believe that just because medical interventions are available doesn't mean they must be utilized. If/when my quality of life becomes as poor as my FIL's, I don't want medical interventions - including the medications used to control routine ailments like blood pressure, diabetes and stroke risk. Stop all medications. My DH couldn't make that decision with his father and I doubt he could make that decision regarding me. DH feels too much like he'd be killing me - but he says he would want me to stop his medications if he were like his father. This is why we've also had these conversations with both sides of the family and our kids. I want there to be no doubt as to what I want for me and what I don't want for my kids.
I'm really sorry for your situation because it sounds so very tough. |
Anonymous
I think this too. |
Anonymous
I have a cousin who took her severely disabled child to a Latin American country and was watched over 24/7 by maids in a relatives house. The child passed away in part because there is not as intensive medical intervention there. |
Anonymous
| I'm not sure how some of these posters really think their posts are helpful to the OP. It is about her and her grief and frustration and not about yours or your cousin, friend, or other (although the kids doing better than expected post was very nice although that may not be OP situation). |
Anonymous
| If there is an online support group where you can have daily contact and advice from those in similar situation? I had/have one (our daughter died) but it was a safe place to vent/bemoan/learn from others AND lets you know that as alone and scared as you are you really aren't. The group I have contact with is a (private) Facebook group. I see its value to those who are members every day. The advice for a therapist is great and the respite too BUT sometimes these are so much work and time to arrange and all you really need is to share your burdens with those who truly walk in your shoes. |
Anonymous
I believe children with disabilities can get long term care in an institutional or group home setting through Medicaid. But I don't know if the child can qualify for that without regard to family income. I know children with disabilities can qualify for the Katie Beckett waiver (which in DC means you get HSCSN, Health Care for Children with Special Needs) without regard to family income. But I think that's aimed at providing services to children in non-institutional settings. |