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You are my aunt 30 years ago. I can't believe what she went through for a child that many thought shouldn't have been saved. My mother would secretly believe that my poor aunt's life was ruined and there were many times I think my aunt believed it too. But, as my cousin became older, there were a few, seldom signs that there was light in his soul. That kept my aunt hanging by her already very thin thread.
It has never been easy for her but she did it and, frankly, she is the strongest person I know. Her son will never know what she went through to keep him alive and well. He will never know how he himself is different and suffering. But it's obvious that he knows her. He is now in a group home with 24/7 caretakers but, when she walks in and says his name, he smiles. Nobody ever thought that could happen and she says just seeing that makes it all worth it. None of this makes a difference to you though, right now, in the beginning of the slog; however, you must hold on and do what's best for you. The respite care is essential. My aunt and uncle's marriage was rough and they needed all the help they could get just to maintain an inch of sanity. Find help. Find your people. Find your place. It's okay. You're allowed to feel as you do. I wish you all the best. |
| I wish I had some wise works of comfort to offer that would somehow make you feel better. I'm in a similar situation except that my daughter is now 6. Honestly, I've grown to really admire my daughter's damn sheer tenacity and defiance of all the odds. It's a daily struggle to keep my emotions in check so I can be the best mom I can be for her. Respite, as pp have suggested, is a key. I have managed to find some peace in the idea that all my daughter has to offer to this world is love and its my job to see that mission out for however long she's here. Doesn't fix if or at times make me any less angry at the shitty hand she was dealt, but I try and choose positive when I can. And those rare smiles somehow carry me on. Big hug to you. |
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OP again. Thank you for the kind words. I keep searching for An Answer to make it all make sense, some way to think about things to make it all better, but I guess there's no such thing.
I'm in DC but can drive into the surrounding area if people have therapist recommendations to share. I'm open to meds but don't really think I'm depressed. It's just a terribly sad situation, there's no way to not feel sad about it. I'm certainly not suicidal, and I would never hurt my daughter. Didn't mean to give that impression. |
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OP - If you are in DC, then are you working with the Early Intervention Program which I believe is over in Anacostia and has some really caring therapists? Also, you need to see if you can get information on the special education charter school, St. Coletta's because it is a beautiful school with caring teachers and therapists serving DCPS students multiple and severe physical and cognitive disabilities. It is also just about year round with a break in August of about 3 weeks. I would say services begin at age 2/3 through age 21. This school will take your daughter to develop the full extent of her abilities with a fully accessible setting and all the therapies right there. I do hope that this gives you some hope that you and your husband can raise your daughter AND continue your own lives, too, though it will be very different from what you envisioned. If you are doing private therapy in the early years, then I would really recommend the respite care aspect. Information is at http://www.stcoletta.org/ and it serves students age 3 through 21. |
| I don't have any experience in your shoes but I'm thinking about you and your daughter OP. I think your feelings are completely normal. Any experienced therapist has seen and heard everything, so you don't need to worry about shocking him or her. A good one will be able to give you some strategies to cope. Blessings to you. |
NP here. I couldn't put it any better. +1000 |
| Big hugs to you OP. |
| You are already a good mom to her. You are a good enough mom, which is what she needs. Stop picking on yourself. Please. |
| I am sorry, OP. Wishing you the best. |
| Op my NT daughter experienced a trauma recently and parenting her through that was nearly unbearable. I can't imagine what you are going through as that nightmare goes on day after day. So I don't think you are saying anything unreasonable. I saw the therapist listed above for just a few visits and it was immensely helpful. A) therapists can help people who aren't depressed learn to cope with difficult and sad situations B) she is great - has concrete advice for dealing with parenting challenges. I wish you the best of luck. |
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Since you're in DC, has your dd qualified for HSCSN? Not only would that pay anything your private insurance doesnt pay, it would also pay for a personal care attendant. My friend's dd has significant disabilities and she has a PCA that meets the school bus and stays until bedtime, plus hours on weekends, all paid for by HSCSN.
There's also Jill's House, for overnight respite. |
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OP - I posted above about the school resources your daughter will have to help you see that there is light at the end of the tunnel in terms of her having the ability to go to a school setting which is so comprehensive in being able to provide all of the therapy services that she will need as well as education and interactions with other students. Right now when she is so young, it is a very isolating and overwhelming time. Do connect to the services recommended above as I am not familiar about what they are called in DC. In Virginia it would at least be the Elderly or Disabled Consumer Directed Waiver which provides up to 20 hours a week of personal care etc. It is important as you recognize to get the therapy and/or medication that you need to help you keep your emotional and physical health in sync. I hope your husband will also consider therapy because the pressures on him, too, must be great. My best wishes to you. |
| I am praying for your family. You are stronger than I would have been --I would have been too afraid and selfish to bring her home. Therapy and respite care are good suggestions. |
Just wondering what you think the options were? Mythical foundling home? Mythical "institution" that your insurance would have paid for hahahaha? Abandonment and arrest for you? Why, in your wildest dreams, do you think this was a supportive comment? |
She was commenting on the OP's strength and offered prayers which is supportive. |