how do I get over my own shit to be a good mom to my extremely SN kid?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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?

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.

I've wondered this too....can anybody answer?

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.

The era in which the state institutionalized anyone upon request -- the elderly, the infirm, the disabled, the mentally ill, -- is long gone. You are the caregiver for your parents, your children, your mentally ill spouse, your alcoholic nephew. You cannot leave your child at the hospital -- well you can, but be prepared to (1) go to jail and (2) pay for that child's care in a foster home or nursing home if your family has any resources whatsoever. Most families do not qualify for Medicaid, and even if they do, there are no group homes available. There are precious few group homes, and waiting lists are extraordinary. They are not for infants and young children.

You might google Willowbrook State School if you are interested in finding out why the era of institutionalizing disabled children came to an end in the 1970's. Look at the pictures. You may never sleep again.

[Anonymous]

There's a larger point here in addition to the facts about institutionalization. Telling someone in your shoes I would have left my kid at the hospital is not comforting or affirming. It does not make the SN mom feel brave or good about herself. It is a constant part of the isolation to be told 'I couldn't do it' or 'you are soooo brave' when all we are doing is getting through the day.

[Anonymous]

Anonymous wrote:There's a larger point here in addition to the facts about institutionalization. Telling someone in your shoes I would have left my kid at the hospital is not comforting or affirming. It does not make the SN mom feel brave or good about herself. It is a constant part of the isolation to be told 'I couldn't do it' or 'you are soooo brave' when all we are doing is getting through the day.

+1000. You either give up or do what you have to do to get yourself and your family through the day. We feel neither amazing, brave or extraordinary.

[Anonymous]

I know this is primarily a DC area forum but if there are any parents who need a therapist that specializes in counseling individuals, couples and children (siblings) with a special needs family member, I know a wonderful one in Los Angeles. She has two special needs children. I am willing to drive an hour both ways to see her.

[Anonymous]

Find a therapist and talk to your own doctor about anti-depressants. You might find respite care through hospice or through Child Life at CNMC. Find a support group, again thorugh CNMC. Like previous poster - you might have an existing DNR in place? My dad has one but he is elderly. Nice to know that decision is already made.

[Anonymous]

I do not know what the terminology for the program is in DC, but in the states there is now under the Intellectual Disabilities Medicaid Waiver, which your child certainly seems likely to qualify for in time, the option of a sponsored home placement. In this approach, individuals, couples of varying ages or even couples with children decide to become the primary caregiver of one with an ID disability. They are employed by a service organization and must go through training, background checks and keep detailed records on a number of things. This is a placement option that in time you may want to learn about as a possible option at some point. There is no shame in placing a child, teen or adult in an appropriate, supportive environment if one is unable to provide the care. It does not mean that your relationship with your family member would end, only that you would not be the primary caregiver any longer.

Right now you need to focus on yourself and perhaps have a complete physical and mental health screening. Seek out the respite services that your daughter may qualify for and/or in-home services. With the time away that you can find, try to find some outlets that will give you relaxation and interest. And of course work with DH on your relationship because a young child with multiple, on-going needs is hard on both parents. If you can be connected to parents of children a couple of years older with similar needs, you may find your best resources on information from local services, to ideas for handling the daily routine to just having others who really can relate to what you are feeling. There is no wrong answer in seeking assistance as you are helping your daughter by caring for yourself.

[Anonymous]

She is not looking to give up her child or place her in an institution. She is just a mom of a high needs child and morning the loss of her what should have been healthy child. Enough with the rambling advice over nothing helpful to her. I'm sure she knows her options.

[Anonymous]

I am glad you shared. I think all of us, at one time at least, felt this sense of grief and despair....yes, to different degrees, but I do think it's part of a process.

I agree with the above recommendations: respite, therapist and try some medication. Do no feel ashamed to unload on the therapist about these feelings; they've heard it all and there to help you!!!! I have seen a therapist since my children were diagnosed and it's been beyond helpful.

Blessings to you and wishing you peace.

[Anonymous]

...and I second the previous poster about looking up Willowbrook institution to see why we don't just " leave a baby at the hospital". Times have changed, you dolts. I can't believe people are being so insensitive to suggest these things to this mom. She doesn't need this bullshit - she just wants helpful advice. That is not helpful !

[Anonymous]

New poster here. To the 'I would have left the baby at the hospital' people I always want to respond 'I'm sorry you failed to bond with your newborn.'

[Anonymous]

OP I am child-free and so can't relate on any level except the human one and so I just wanted to reach out and send you love and light. I think your feelings are totally normal and you're brave and smart to acknowledge them not just for your mama duties but also for yourself, so you and your child and other family can live the best life possible.

Hugs.

[Anonymous]

Speak to your pediatrician about support groups for you and call your county government about Medicaid waivers that will give you affordable caregiver assistance. Also, look into early intervention programs that might help your child--these groups often provide a comfort and support to the parents that few others can give.

Each step you take will help you feel better and in more control. Trust me on this.

Remember: You are strong. You can do this! Best to you and your child.

[Anonymous]

Anonymous wrote:

Anonymous wrote:There's a larger point here in addition to the facts about institutionalization. Telling someone in your shoes I would have left my kid at the hospital is not comforting or affirming. It does not make the SN mom feel brave or good about herself. It is a constant part of the isolation to be told 'I couldn't do it' or 'you are soooo brave' when all we are doing is getting through the day.

+1000. You either give up or do what you have to do to get yourself and your family through the day. We feel neither amazing, brave or extraordinary.

My situation is different. DS had cancer as a toddler but if one more person told me " You are soooo brave!" Or " I couldn't do it...." I would have to punch them in the teeth. What were my choices? Most days I was just exsisiting while trying to keep a toddler entrained and keep him from yanking out his central line. It sucked. It still sucks. Everything in his life is colored by the cancer - the long term side effects from the chemo are real threats.

But OP - the reason I am only half crazy rather hen full on crazy is therapy. Have you considered calling the Vienna women's center? That's where I got a referral to my therapist.

[Anonymous]

OP, please do not feel that you cannot share this with a therapist. You may feel that a (small) weight is lifted off your shoulders if you're able to talk freely about your feelings (and not just with the anonymous people on DCUM).

I think it's really easy to talk about how brave you are and admire you, and I'm sure you are brave, but I also know from experience that you are doing what must be done, putting one foot in front of the other, and living through each hour as best you can. There's not really much more you can do.

Also, I don't think you are questioning your daughter's value by feeling that her life is a waste, or being a lousy mom by thinking this. There are many loving wonderful parents out there who wish to end their child's suffering, or wish that their severely severely disabled child could live up to their potential, to whomever they could be without their disability or illness. I think you love your daughter and it's heartbreaking beyond belief to see the huge gap between who she is--the horrible lot she drew in life--and who she might have become. Please don't think less of yourself for feeling this way.

Be kind to yourself. I am a stranger rooting for you to survive this even when it feels unbearable.

[Anonymous]

22:04 put it so well.

For me, meeting other families and children with my daughter's disability helped me move my life forward.

My daughter is not school age but I live near St. Coletta's and see the comings and goings of the students and staff everyday. It really seems like a positive place. I often chat with staff while they are chaperoning the students to and from the Metro. It has made me feel better about being thrust into the disabilty world. I see many students who have severe disabilities and I bet if you contact the school they could connect you with parents and professionals familiar with your daughters disability. I did that myself with Easter Seals after my daughter's birth and met a few families that way. Not feeling alone has been key for me.

You likely already have HSCSN and access to the respite care and personal care aides. You should know that you can also use your respite hours at Jills House in VA too. If you do not have HSCSN I collaborated with other parents and made a step by step guide to simplify the process. Let me know if you need it and I will post a link.

My thoughts and prayers are with you and are for whatever will help your family move forward.