Worn out step-mom

[Senior Cookie]

Hello all, I'm new to this site. A year ago I re-connected with an old flame from years ago, and we were married last month. Along with my adorable, wonderful new husband (who will be 81 next month!) came his 19-year old daughter, who lives with us. He has three older children, all married with children, so at age 62 I am suddenly a mother and grandmother; I never had any children of my own, and it's a delight to be welcomed so warmly to the family.

I'm told that this youngest daughter showed signs of being "slow" from infancy, so much so that she repeated the first grade. She showed many signs of disturbances and limitations which only got worse when at age 12 her mother died after a long painful illness. This year she barely graduated high school. For years, she was (thank heavens) closely followed and carefully tested at school, with lots of intervention from the "Special Education" folks. Our state has declared her "significantly handicapped" so she gets help with training to ultimately be employable. We've already gone to Plan B, since Plan A turned out to be too hard. I spend a lot of time looking into possibilities for her.

I feel bad to have to acknowledge it, but my husband (and his wife who died 7 years ago) over the years apparently did just about zero to help this daughter, alternately indulging her and ignoring her needs. He kept hoping her symptoms would just disappear naturally as she got older, tho now he sees that she's only gotten worse. By now, from a lifetime of walking on her tippy-toes, for instance, she is unable to walk any distance at all, her hamstrings are crazy short. I took her to the podiatrist, she had 8 weeks of physical therapy, $500 of special shoes. A few months on, she doesn't do the exercises any more, nor wears the special shoes. As a youngster, she only intermittently saw a therapist. In the last year, I've managed to get a diagnosis from a psychiatrist -- dysthemia, ptsd, plus a list of other dysfunctional behaviors, a couple of which are in the category of self-harming. She's on Prozac now, sees a therapist. She has wildly uncontrolled eating habits, lots of pretty extreme secret eating, weighs 300 lbs.

Her below-average IQ is not low enought to qualify for the help that more heavily handicapped people can get in our area. Her "learning disabilities" greatly limit her capacity to learn, the result being that her understanding of the world is wildly skewed, she misunderstands and imagines such loopy stuff, is afraid of everything under the sun; she is a sitting duck for whoever would like to take advantage of her. Her general demeanor is quiet and gentle; she sleeps a lot and is on the internet a lot. In general, she acts like a simple-minded 10-year old. She goes to school tho can't bear the stress of more than 2 lightweight community college classes. No friends, no interests. She cries a lot, I hug her and give lots of "pep talks" which she responds well to.

Further, her personal hygiene and grooming is revolting, and she just plain seems unable to learn how to wash properly so she smells bad. She is unable to look at herself in the mirror (an example of one of many dysfunctional behaviors) so the greasy unkempt hair is a real problem. She also pulls her hair out (and eats it) so there are bald patches.

Overall, we have a good relationship, but it is so draining on me. And I worry -- how will she ever get hired anyplace? I wouldn't hire somebody who looked and smelled like her. Is she really incapable to learning how to wash and shampoo, or is she being lazy? How is it that she can work a computer, cell phone and car and not be able to shampoo?

Frankly, most days I just want to be alone with my husband, without the huge stinky and spooky girl lurking over us. Which makes me feel embarrassed that I'm not more generous-minded, I wish I could more easily accept the situation. I'm hoping some of you will understand. Got any coping suggestions?

 

[dashcat]

Welcome, Cookie.

First of all, you are a very generous person. Your thoughts and your feelings about your Step-D are perfectly normal and reasonable. What matters are your actions, and it sounds like you are working very hard to help her.

In my community, we have something called the County Sheltered Industries. It's a non-profit organization that employs special needs people. They do landscape work, piece work, factory work and they even volunteer. I photographed a group volunteering at a no-kill animal shelter. It was heartwarming. The individuals are given jobs according to their abilities and they are trained. The organization has grants that keep it going. Maybe your area has something like this? She might not be employable in the conventional sense, but she might be able to work in a similar organization or for Goodwill or something. It would do wonders for her self-esteem and it would give her something to do.

My heart goes out to her and to you.

Dash

 

[busywend]

Start looking into Adult living facilities with the state. She is not going to be on her own anytime soon, it seems. But, she will learn life skills there and they will teach hygiene and maybe even work skills.

 

[buddy]

Hi, welcome to this cool group of people. Dont need to apologize for your feelings here... or be embarrassed. Your feelings are normal and you took on a huge responsibility by joining this family. I am sure there are rewards or you would not have done it, but I dont think any of us could have predicted what life as a parent of a difficult child (gift from God) would involve fully.

So, some questions.... What kind of insurance does she have, is she on disability? SSI? If she has not had a recent evaluation, not the kind from a psychiatrist, it might be a good time to do that because then some doors can open up. Sad to say, but many psychiatrists will just label teh symptoms they see in the office and nto do a complete evaluation. If you possibly can, see if you can get a neuropsychologist evaluation done. This will be more useful because it will help you see what her strengths and weaknesses are. It will help show how she thinks and learns and they can recommend therapies for her. They will be able to give you more useful diagnoses. One thing that I am wondering about is Autism Spectrum disorder or Pervasive Developmental Disorder (PDD) (same thing but different medical book). She should probably also have an Occupational Therapist (OT) evaluation. They will look at her motor skills and ability to do daily living skills and how it is connected to motor planning, physical issues, etc. They can help her work around the weight issue too. They will also be able to look at sensory issues which can have a huge impact on behavior. She should also have a communication evaluation (speech/language) to help look at her strengths and weaknesses in social conversation skills.

Autism is a possiblity but of course we cant see he thru cyber space and you can so if this seems totally off base I understand She does need habilitative therapy and there are usually good programs for adults. I have worked in thru college and grad school, vocational programs, (pre work skills etc.).

The reason I am wondering about autism is.....If she is a toe walker, that is highly correlated with autism, and the fact that she has no friends etc. could mean she does not have the communication skills needed to have them which (among other things) could also can be a sign of autism. Does she have things she does over and over and over? Does she have any sensory issues like sensitve to fabrics, touch, sound, smells, bright lights? Does she fixate on things.... parts of things??? How does she do with change in routine or a change in plans? Does she do better if you stick to a consistent way of doing things? Does she like a varitey of foods or is she eating (though alot) only certain kinds of foods or textures of foods etc. ?

Regardless of the diagnosis, the important thing for her right now is to do what you are thinking of... develop better independent living skills. There are many good programs now and once people get going in them they often really like it, but it is hard to convince people at first because change is hard for everyone, especially hard for someone with special needs.

To answer your question about ability.... I bet she is quite capable of doing more for herself. THere are ways to teach these skills step by step...often working from the last step backwards.... so you/therapist...helps to wash then leaves the last little bit for her to do, then you stop a step earllier then backing up until they are doing the whole thing. She may need adaptive equipment to help with reaching and motor skill issues. I have seen people with IQ's in the 40's and 50's do very well in semi-independent living skill programs! There is always hope especially if she really has not even had a chance yet!

So, I know it is a lot but what do you have to lose? IF you possibly can, call around for adult services (your county developmental disability department for adults should really be able to help and you can even ask for a case manager who can help you get her SSI if she doesn't have it (maybe she does since her mom died?...others here know more about that) and other funding for programs , including transportation to and from therapies and day programs.


Bless your heart for taking this on. YOu need to be healthy and be able to enjoy this new journey! Yes, she is special and deserving, but so are you.

 

[Hound dog]

Welcome

In addition to what you've already done, you might want to set up evaluations with both a good neurologist and a neuropsychologist to give you an even more in depth view of what you're dealing with. I'm going to guess, given her father's age, that her mother was considerably older when she gave birth to this child which increases chances of prenatal issues as well as birth trauma that can cause brain damage. From what you describe, sounds as if you may be dealing with as much along those lines than "true" mental disorders which require a different approach to treatment.

If it's not already been done, I'd file for disability benefits for her, it's obvious she's going to need them. Then look into adult assisted living facilities for the mentally handicapped. Even our small town has a halfway house for them. I live across the alley from it. Such facilities assist them with whatever daily living needs they have as well as transport to and from school or work. Some technical centers (used to be known as vocational centers back in the day) train the mentally handicapped for specific job functions to help them become more marketable and will even work on social skills and training for job interviews ect. The Tech center my son attended provided such services and their students did quite well.

I battled the hygiene wars with my son for literally years. After a while......I switched to "do to get". Food was his primary motivator. If he wanted to eat, he made sure he was clean. (no I didn't starve him lol ) He's still not perfect but he doesn't reek or look awful and if I tell him it's time to hit the shower he will.

You aren't selfish for wanting alone time with your new husband. And it's good to set up as many services you can get into place for this girl as quickly as possible, for her benefit, and for yours. You'll need to know if she will be at one point able to function independently, if not, then you need to make plans for that as well.

((hugs))

 

[Signorina]

Hi Cookie!

I don't have any experience with disability - but in reading your post, Prader-Willi sydrome came to mind (a friend's niece has it and the over eating and picking rang a bell). I looked it up and while it's probably unlikely with- your stepdau- I really think you may need to explore the root of her disbility a little further. I think Lisa's suggestion of a neurologist is a good one. I would also take her to an endocronologist as well.

I think the suggestions regarding a placement in an assisted living facility are good ones. At 19, she has a long life ahead. I hate to be uncouth, but it's likely she will outlive her father and you need to have clear plans for her future. I think it would be nice to get her settled so you and your h can enjoy your marriage. Do her half siblings have any insights or suggestions? I assume they are next in line as guardians - you and your h should sort that all out now - and get everyone on the same page

Welcome to PE...

 

[DDD]

Welcome. Here are some thoughts that come to mind. First I'd suggest getting copies of her school records and testing from the past. That by the way could be tricky unless your husband has authorization. on the other hand you would be able to actually see and read what testing has been done in the past. If she had special accomodation there has to be justification in the records. Due to her bioMoms illness and the aging of her Dad it is quite possible that the records are limited but it might show a pattern.

For disability (which is important) there have to be more current professional findings since she is a legal adult. I strongly support neuro/psycholgical testing by a well qualified team. The testing usually takes about six to eight hours of separate tests which then are consolidated to provide a specific picture of behaviors, capabilities and dxs. This is key for your understanding and it is also key for finding support for her.

Absolutely you need to get her squared away to function with-o dependency on you and her Dad. My husband and I are seniors and I completely understand the biological need to rest more and have a peaceful life. Fingers crossed that she has good insurance and that these steps are affordable. I have never coped with the overeating problem and only minimally the hygiene problem but it makes sense. No doubt she did not get the structure, therapy etc. that she needed and took comfort in food. Sad.

I'm on your team and imagine it is quite overwhelming. You can find the help she needs just taking one step at a time but first you need to have up to date evaluations showing exactly what the problems are, what the capabilities are, what the choices are for her future. Hugs. DDD