Should I stay home with my 23 year old aspergers MMR daughter?

Tina - posted on 06/08/2016 ( 2 moms have responded )

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I have a 23 year old daughter with Asperger's. She was diagnosed in 8th grade while receiving OT and speech at school. She has always had poor motor skills, amazing memory, and low social skills but it took these two individuals to put a real label on her. And believe me the label was a blessing for other services. When tested at a younger age for general disability and determination for IEP needs, she had a verbal IQ of 90 and performance of 60. These two are usually much closer together which means we have a young lady who comes across far better than she is. When given a single number, it was 76. 6 points above MMR. She was mainstream in high school while attending Voc Rehab class and she was able to attend a college in New Mexico (ENMU-Roswell) which we found through Voc Rehab and received a certificate in child care. It was a one year program and she came back to our small town and within six months had a part-time job as a bus aid. She always loved school buses and can't believe she gets paid to ride one. She was offered a route with more hours but likes her current driver and the preschoolers and refused to take on the other shift. She does not have a driver's license but is again pushing the odds and has a permit and close to taking her drivers test. Sounds wonderful and I know it could be much worse. At work she is respectful and performs. At home she won't pick up after herself at all. She yells at her father and I on a daily basis regarding cleaning up her things. She is gaining weight at an alarming rate. There just isn't much to do in our town and she has become obsessed with buying laundry products. (a teacher bought her laundry stuff for her trip to college in Roswell and she's been obsessed ever since.) She does laundry washing things over and over again. She doesn't fold or put away. I have a degree in Accounting, but was blessed with staying home with her and her sister when they were little. I went back to work when younger started kindergarten, but quit when my Aspie was starting middle school. There were just too many concerns. I've ended up working part time at her schools or nearby. I have now gone back to work full time for several years now. In this time she has gained 60 to 70 lbs (she is 6' - 260+). My mom and stepdad live nearby and sometimes pick her up and take her to Walwart where she buys laundry soap and junk food. We've asked them not to do this but even when she goes shopping with us she darts away and ends up with these things. She also has 2 friends (also high functions special needs) who drive, though she doesn't see them too often. It's like she has no other fun in life but buying these things. I fear her license will just mean more trips to fast food. She already gets pizzas delivered to the house when we are not home. My husband earns a good living and we could afford for me to stay home. We are paying rent for our other daughter who has a tuition scholarship at university. Things would be tighter and of course this means less in retirement while trying to sock away as much as possible for our daughters, especially unknown needs for my daughter with disabilities. Recently I've discovered she only had .19 in her bank account, and that she has pulled out some baby dolls she used to play with and has been buying baby clothes and diapers. Lots of them. She pays for her cell phone bill which she got her own account when I threatened to turn off her phone until she was more respectful at home. I pray and pray for a sign if I need to quit working and be with her, getting her moving, find ways to help her. (She's not in SS system as neither her dad nor I have time to get her there to work it out). She is hiding the babydoll and the diaper purchases but not very successfully. I woke up this morning 4am like I was hit in the head with the aha moment that she is pulling out this doll after all these years because she is so bored and lonely. She is hiding it because she is embarrassed. When we try to suggest things she could do she balks at it. I know I can't be a helicopter and oversee her activities her whole life, but I do believe that my choice to give up a career and be there for her got her so far, and that right now I am again choosing career over her, while she is flailing at home. And given that I am financially able to stay home, I should chose the harder job and helping her. I think my husband and I both think I should stay home, but also question whether this is going in the wrong direction for her independence.

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Tina - posted on 06/09/2016

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Thank you Evelyn for your thoughts. As part of the program in Roswell, there were many life skill classes. She is completely able to cook, clean, do laundry, etc. I believe she could live on her own, although based on her room, I worry it would end up like an episode of hoarders. In Roswell they had room inspections so she had to have it cleaned up every week. We also were turned down for DDD which the wavier program is part of, but I am looking into getting answers for what help I can get for her. I think in many ways, though she is 23, maturity wise she is definitely not. She does have a job, very part time and off in the summer as a school bus aid.
I agree with you as far as not wanting to hinder her choices. I am just disappointed that my mom and step dad don't seem to take her to their place to go to the pool, or hang out with their dogs, who she loves. Just hang out and do things with them. It is mainly just my stepdad taking her to walmart. yes, she loves there, and she loves that she had a little money from her job that she can spend on more laundry soap or junk food. But when she already has four bottles of tide and is needing to loose weight, why would they only chose this option of taking her to the store where she will make these purchases and not look for other things to do? It's frustrating to me.
Again, I appreciate your feedback. I do feel like if I stayed home simply to be helping her (forcing her more like it) to make better choices, I am hindering her independence. My next step is to reach out to the counselor (therapist) who worked with her in high school and see if we can meet and discuss ideas. She knows my daughter very well and I think this will help.

Ev - posted on 06/08/2016

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Have you considered getting her into a wavier program? It is a program designed to help those with disabilities still get someone to help them during the time that is needed during the day and allows the person to make their own choices and such. A staff member would be there to walk your daughter through her day and help her do things she needs done from doing house work to working at her job. It is a thought.

Also she is 23 years old and as such being an adult she should still have her choices and be able to make them. You trying to do it for her hinders her being her own person and asking people not to come take her to the store or other places also hinders her being a part of the community at large. She needs to learn independence as well. And you keeping her under your wing is not allowing it to happen.

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