in laws - expectations
Hi again,
I've not posted for a little while....reminder of situation....my partner and I have been together 6 ish years we have a 4 and 1 year old together and I have SD27 (almost 28) with downsyndrome and severe learning difficulties. SD lives ta home with us full time.
Up until last month we had no respite for SD so she was with us 24/7 all activities etc so anytime I went out with my very little kids to do kids activities I had to take adult SD along.....this became very frustrating, mentally exhausting and just generally annoying for me as I had such limited quality time with little ones without also being a carer at the same time. We've made massive progress in that partnervhas reached out forbsupport and we no have 2 overnights a month respite where SD goes to a residential home with peers with similar needs, does activities of her choice, shared dinnerscetc which she says she enjoys and has chosen to go back to. We also have made a plan that she transitions to supported living in around 2 years, again this will mean being with peers and carers and having a timetable more suited to her desires, SD also told the social worker when she was asked where she wanted to live that she wants to live with her friends so all in all the right thing for everyone.
No the tricky and frustrating bit.....my partners family have always been a pain in the a** when it comes to SD....they treat her very differently to the other children because she has special needs, they still see and treat her like a small child do things for her like helping her getting dressed, doing her shoes, carrying her bag for her, hekping her wash her hair in shower, helping her blow her nose and so on but these are all things she can do independently and we have worked hard to teach her and encourage her to do so that she can be as independent as possible and treat her like an adult not a baby or kid. Now my partners mum and siblings have recently found out SD is going to respite and they don't agree with it...they have messaged saying things like she's such an joy and they will have her once a week if needed etc (I'd like to point out they have never offered partner any support like this in SD entire childhood - they do a random babysitting couple of time a year etc but never this level)...my MIL when finding out about the plan for supported living cried and was cross with us stating taht since we had the little kids and got married we are pushing SD out....she didn't appreciate date at all that SD has said for a long time that she wants tk live with her friends when she is older and just went on about how she can go live with her.... my partner has been strong so far and told her mum and sister and said these are SD wishes and in her best interest as she gets to be with peers, have her own life etc. I just know that as the opportunity for more conversation arise the more difficult they will be and I don't want my partner to feel bad for going down this route because it's been such a journey to get here.
Don't really know if I have a question for you all or just need. Listening ear and a place to vent.....I guess how on earth do you deal with in laws or any other froends or family that don't get why this is a good decision, they don't understand the impact of being fully tied carer, they don't get impact on other kids or on SD herself and they have co peltly low or no expectations or aspirations for SD long term as they just see her as a little vulnerable kid?
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Just re read....sorry for all
Just re read....sorry for all the typos....hopefully you can make sense of it haha
Pardon my language but FU*K them!
You and your SO have done a tremendous, difficult and exhausting job with SD. The proof is that she likes and wants to live in a home with peers. It's not like you'll be abandoning her. I'm sure you'll all still keep in touch and visit.
Your in-laws have some nerve! I don't even know what to suggest as a mature way to respond to them. I'd be tempted to say, "I know SD will love when you visit. I'll tell her to expect you every week".
Ask them to take SD if
Ask them to take SD if anything ever happened to her parents and watch them backpedal. They are not in your shoes so they have no say. It's so easy to judge from the outside but asking them to join you 24/7 usually weeds out the riff raff. Bravo to giving her the opportunity to spread her wings.
To he honest even if they did
To he honest even if they did want her full time it would not be in her best interest as they baby her and do not allow her to thrive to the best of her ability....they maje her lazy and lose skills because they do everything for her. To the point that my partner won't even name any of them as power of attorney if anything happens to us as we don't trust them to make decision in SD best interest bymut more around their own emotional response
The way you deal and respond
The way you deal and respond should be focused on the benefits to your SD.
They need to hear that she enjoys her time away because she gets to have a more full independent life. That she loves being with her friends.. and that as her parent, your DH has an obligation to give her the most fulfilling life she is capable of enjoying.. and that is not possible long term in the home environment.. that he plans on continuing to include her as part of the family, but transitioning to this new life is the growth she needs.. and will ease future transitions if and when he is gone.
They can hear that he appreciates the offer to spend time with her.. and he will certainly take them up on that.. but that it won't change the goal to have her live in the group home environment because it will be more enriching for HER.
edit to add.. he doesn't need to tell them she is burdensome to you.. and complicated.. just focus on this is something SHE enjoys and wants.
Ok
I have a daughter who has Down Syndrome. What your SD is telling you is not just what she wants it's what she NEEDS. People who have DS need stimulation and absolutely not coddling and babying. They thrive when they're pushed to being independent and capable. Keeping her at home will make her more and more dependent on you, less and less capable and let me assure you that she will HATE it.
My daughter has been in a group home since she was 19 (she's 22 now) and loves it. She has a ton of activities (we're going to her dance recital on Sunday), participates in workshops (she's big on gardening at the moment), goes on holiday with her group and, most importantly, feels that her life has meaning.
We still see her from Thursday evening to Friday afternoon (she has her speech therapist on Friday) and for family holidays.
Please tell your in-laws that they can go kick rocks, they have no idea what she needs a d all the want is to baby her, passing her from pillar to post - what kind of life is that for her?
Please sign her up ASAP for full-time at the place she loves, do it now because there is always a waiting list. Please put HER first. This is about HER.
Ignore the naysayers and feel no guilt. They have no idea what's best for her and they don't see. to understand that she's an adult human and not a toddler/baby doll/imbecile who needs to be spoonfed.
Winterglow, your beautiful daughter won the Mom lottery.
She is blessed to have you.
I'm so happy she is enjoying her life and thriving.
Thank you. I just want her to
Thank you. I just want her to live her best life.
PS
I'm the lucky one. I have learned so much from my daughter. For those who don't know, she has a standard model twin sister. There are times when I feel very small when I see how they take care of each other though they're more than 2 hours apart and seldom see each other. I am so proud of both of them.
My SO's brother has a son
My SO's brother has a son with autism. This is from his first of 2 of the brother's BMs who lives pretty far from here, and the son is now about 30 and lives with her in her trailer. The BM lives off his social security and they also have the son with autism's brother getting paid by the state to "care" for him. The son with autism is verbal but not articulate. He can perform his own activities of daily living and all, but would never be able to live alone. He does need to ne supervised, so it's not fraud, as someone does need to be responsible for him. However, I do think he would be happy in a group home because his brother brought him to family Christmas last year and he had a great time talking to his cousins. I was afraid the large group and noise would be hard for him but he loved it. The brother said that was the first time he had left the house in 3 years. He mostly spends his time watching TV from what i can tell. He lives 5 hours drive from here and i have no "skin in the game" as far as being able to tell anyone what to do, but it seemed to me that he is being done a disservice. From your posts, your daughter is living her best life as far as reaching her potential. This guy doesn't seem to be.
What great news for your SD and for your family.
I have no SN children of any age. But I have employed a number of SN adults in my businesses over the years. They lived in supervised group home environments, lived wonderful lives, had friends, activties, trips, their own space, and were wonderful people to work with. They were some of my most reliable and pleasant employees.
Do not let your ILs undermine your SD's transition to her adult life in a managed home environment where she can thrive and take on increasing adult responsibilities, relationships, activities, etc...
What you and your DH are doing for your adult daughter is incredible.
She is blessed to have you.
Keep up creating a wonderful life for yourself, your DH, your SD, and your LOs.
Long term plan
Your plan is also the better long-term plan. You're setting her up for success. Which means that after you and your husband are gone, she will be well established and settled in her own independent life. Your in-laws are being very selfish to think that they could take over. Because someday both they and you two will be gone. And then where will SD be? This ensures that she has all the people surrounding her who love her as well as her own independent support system.