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Step-mom to Down Syndrome 17 y/o

DSstepmommie's picture

Well I am a step-mom to a 17 y/o DS daughter. I raised her from 6 months old to 14 y/o. I went through 37 surgeries over 30 hospital stays. Couldn't even be home with my own children to breastfeed when they were babies because I was taking care of her. At 14 y/o her bio-mom was doing excellent and we sent her to live with her it was a "Tag your it" moment. Here we are 2 years later and bio-mom relapsed on drugs. We had to travel thousands of mile to pick my step-daughter up. She's now 17 y/o and she has regressed, been through trauma, and every form of abuse. She is still soiling herself daily. I am now a college graduate and had to give up my career to provide her 24 hour care. She is literally abou 2 y/o cognitively! But here's the deal....I don't want to do it anymore! It's killing me! I'm depressed, miserable, and I just don't have to the love or patience to do this anymore! I had finally been able to be completely present for my own children after raising 3 step-children. Here I am again and I hate it! To top it off my husband does not want to help at all with her and I'm ready to run!! Anyone else going through something similar??? 

Comments

Squakamole’'s picture

They have a wide network of services for children/young adults such as these. Please do it before she turns 18 it is much easier to get the help YOU need while they are minors. 

SteppedOut's picture

I mean... kind of. Her husband should do this, it's HIS kid. 

OP should be planning her exit if her husband doesn't stop acting like a slave master.

DSstepmommie's picture

Thank you I just feel if I don't do it it won't get done! We have been married 20 years so it's hard to just run 

SteppedOut's picture

Do you want 20 more years of sacrificing YOUR (and your children's) lives for HIS kid that HE DOESN'T take care of?

Nothing changes if nothing changes. 

DSstepmommie's picture

God your so right!! I just can't anymore I'm 40 years old and feel like I'm aging daily 

DSstepmommie's picture

She is involved in several services but with COVID everything is extremely behind and delayed 

tog redux's picture

It's not your job to take care of her - put her in group care, she will thrive there, with activities and friends. It needs to happen soon anyway, as you shouldn't plan to take care of someone else's disabled adult child.

Momof6WI's picture

That is incredibly sad. Where is dad? He should be figuring this all out. And what do YOU want to do? 

SteppedOut's picture

No. It is a complete sentence. 

Why did you "have to" give up your career. Again, no. 

Seriously. Stand up for you! It's high time and long over due. Time for your husband to figure out a course of action for HIS daughter. 

If he continues to try and "make you" not work and take care of HIS responsibility, leave him. This is definitely a line in the sand moment. 

DSstepmommie's picture

I would say NO but then who will care for her? It breaks my heart but I just don't have the love in me anymore and I feel resentful 

tog redux's picture

Group homes often have very caring staff. Since you seem to be the only one who cares about her, do some research and find the best place you can. Visit her periodically so you know she's well cared for and can address any concerns that you see.  Take her out here and there for outings if her behavior allows it.

You are a kind person, but enough is enough - you can be her support without sacrificing your life.

DSstepmommie's picture

That is the plan when she turns 18 I keep telling myself one more year but I'm such a miserable angry person I don't know if my mental health will last another year! 

tog redux's picture

You can do it before 18 - start looking now. At least you know there will be a plan ready for her. In my state, it takes a while to get people into group care, and we are a high-services state.  So get her on the list now, then you will know there is an end date.

You are a good person, your DH better appreciate you.

ETA: Also, be the squeaky wheel for her to get other services in your home. Around here, the parents who advocate the loudest get the most services, the system is slow-moving.

mommadukes2015's picture

There should be some respite services or CDPAP that is paid for by the county (it's a bit quicker of a process) to come in and meet her basic needs-I'm pretty sure that's a federal program so your county should have it or something similar. Some places call it CASA. 

Winterglow's picture

Let me put this quite clearly so there can be no misunderstanding, your husband is an arse. When you have a special needs child, you take care of him/her, YOU. You don't get to turn your back and expect anyone else to do your job! Men like who wash their hands of their offspring when the going gets tough make me sick and angry. 

Children with down syndrome progress when given stimulation (as you have seen). By turning his back on his daughter, your duh effectively condemned her to regress. 

There are actually websites out there for people who want to adopt children and babies with DS... A lot more humane than treating her as if she didn't exist. 

OP, your husband may be an arse, but you are definitely not. Thank you (for her), for all that you have done for her. Your love and care came at huge personal cost to you. You made a difference to her lifelife. It's such a pity her parents are so useless. 

She's a lucky girl to have had someone like you in her life and you can be sure she knows it. 

Please tell your Waste-of-space husband to get off his lazy arse and take responsibility for his daughter like a man and to stop expecting others to do his job for him. 

DSstepmommie's picture

Thank you for making me feel normal in this situation there times my own family make me feel horrible because I have expressed that I don't want to take care of her anymore!! I will definitely look into DS adoption for her! He sint going to help much! He says it's because she has hair like an adult etc etc but for god sake she is mentally 2 y/o I just think he has a hard time admitting a child with disabilities could be his but I'm sick of the stress and we are fighting constantly because I'm so worn down! I'm at a loss! Damned if I do and dammed if I don't!! Always the "evil step-mom" in everyone's eyes!! 

Winterglow's picture

He should have been involved in her care from day 1. He has no excuse. 

You, my dear, have gone above and beyond what anyone could ask you. Please look around, there may be other possibilities for her. I know a couple who had a daughter, with down syndrome. She died from measles at3. She was the youngest of 6... They decided to adopt and foster other children with DS. They live on a farm and everyone chips in. All I'm saying is that there are other solutions out there. 

Please tell your family that if they can't be supportive to keep their opinions to themselves. There sometimes comes a time when keeping a special needs person at home where she's not getting the care she needs is just plain wrong. She needs an environment that corresponds to her needs, even if it's just seeing other people. 

Don't beat yourself up and don't let anyone else beat you up either. 

Winterglow's picture

Let me put this quite clearly so there can be no misunderstanding, your husband is an arse. When you have a special needs child, you take care of him/her, YOU. You don't get to turn your back and expect anyone else to do your job! Men like who wash their hands of their offspring when the going gets tough make me sick and angry. 

Children with down syndrome progress when given stimulation (as you have seen). By turning his back on his daughter, your duh effectively condemned her to regress. 

There are actually websites out there for people who want to adopt children and babies with DS... A lot more humane than treating her as if she didn't exist. 

OP, your husband may be an arse, but you are definitely not. Thank you (for her), for all that you have done for her. Your love and care came at huge personal cost to you. You made a difference to her lifelife. It's such a pity her parents are so useless. 

She's a lucky girl to have had someone like you in her life and you can be sure she knows it. 

Please tell your Waste-of-space husband to get off his lazy arse and take responsibility for his daughter like a man and to stop expecting others to do his job for him. 

mommadukes2015's picture

As someone with a special needs SK (autism) and someone who works in Care Management with the ID/DD pop, first let me hug you (((((hug))))) you have selflessly stepped up in support of this young woman and she is undoubtedly better for it. 
 

I tell the parents I work with all time, in neurotypical families around 17/18 kids grow up and move out (sans step kids that bounce back and forth a bit). It's normal at this stage in life to be tapped out and ready for the next phase. So please don't feel bad about no longer having the desire to do this. It's actually very common. 
 

Depending on what state you are in, ther could be a number of options available. All of these options take TIME a lot of it, there are no quick fixes in these circumstances but the sooner you start the better. I would google your state's name, services for people with disabilities and see what comes up. From there, there should be some kind of contact info, start calling. If that doesn't work cal your local DSS office of the aging (they are a great resource) or if they don't have one Adult Protective can refer you (without a report or anything stressful like that). 
 

just a little more honey you'll get there <3 and in the interim please do make your DH step up. That's ludacious. 

Evil3's picture

You said in one of your replies that you've been with your DH for 20 years, but in your post you said your SD is 17. So, are you exhausting yourself looking after your DH's child from his cheat partner?