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Holiday or not to holiday?

Suzi's picture

So what's the views on holidays? it OK?.....when is it OK to not take SKids on holiday?..

I have a 26 year old SD with downs syndrome and severe learning difficulties. She lives with us full time....(which is another story) we also have a 3 year old and a 7 month old together....

We have a holiday planned for this summer and I have mixed feelings...I love going away and looking forward to the quality time making memories and firsts with my babies but I'm dreading taht SD will be present 24/7. Now I do t have the best relationship with her, she needs lots of prompting and support and adult direction...needs adult carer 24/7 etc so there is no break from it while we are away l....I dont have the best relationship with her and don't overly enjoy her company as generally everything feels like an argument.

Long term I want to do things like take kids snorkeling on holiday etc but these are activities SD can't do and will refuse to do so where do I stand.....

It's easy enough to go away as a couple and leave all the kids if we are lucky enough to have family have them but...what about taking yoimger kids and not her....I worry about it seeming like she's being excluded but equally she's nearly 27. 







notarelative's picture

My friend has a daughter45 with Downs. She has lived in a group home for about 20 years. She has thrived there. She has friends and attends group activities. She's still part of the family and comes 'home' for holidays and attends family events. While she comes 'home' for these, the daughter considers the group home her home. Living there enables her to live her life to her fullest.

Perhaps it's time for Dad to investigate similar living arrangements. It will take time to find the right living situation. There has to be an opening. Both sides have to agree. You have to like it and they have to accept you. But, if he doesn't start looking, he will never find an appropriate place.

la_dulce_vida's picture

Consider hiring a college student or other adult to go on vacation with you as a 1:1 companion for SD. This person will need to be paid and given some time off.

Winterglow's picture

I have a 21yo daughter who has Down Syndrome.  She lives in a group home and,  frankly, it's the best place on earth for her! 

Firstly, people with Down Syndrome need stimulation... desperately. They are often capable of much more than we or they are aware of, so maybe set higher expectations for her and her behaviour.  Besides that, letting her stagnate in a family home (please understand that this is not a criticism of you and your family, I'm simply stating facts, BTDT) is only going to let her regress.

My daughter is in a group home, she gets work experience,  goes to swimming lessons, dance lessons, and has lots  of friends.  Honestly,  she's blooming.  She spends a night here per week so she can see her speech therapist the next morning. 

She loves being independent of us. In August she'll be spending 2 weeks in the alps, hiking,  swimming in lakes, etc. with her home. In September,  she'll be spending 2 weeks with us. We're not going anywhere but she enjoys the peace and quiet here.

I know I haven't answered your question but just wanted to encourage you to find a group home that is a good fit for your Sd as soon as possible. You all stand to gain from that. 

Suzi's picture

I completely agree about the will absolitly do her the world of good but that's a whole other issue as need my partner to be on board with that. I guess until such a time that this happens if it happens I need to find ways of coping day to for now I'm trying to find temporary solutions to the things I find challenging .

Rags's picture

I get hesitance.  Even for me getting a neuro typical kid to launch was both a challenge and emotionally difficult. He is the kid. It was all kid all the time and then, it wasn't.

But, parents need kids launched as much as the kids need to launch.

With SN kidults, they need life beyond parents and family.  They need their own life as much as possible.

Group homes/communities are such incredible life environments for SN kidults. Calming for the families, engaging for the residents, and can be truly amazing.

Winterglow's picture

I agree. Group homes allow SN adults to blossom and truly have lives of their own. You'd be surprised how much they can grow and gain confidence.  It's best to do this while they are young ( I.e. not wait until you have no other options) so that they can adapt and make the most of their lives. Also the waiting lists for the best ones can be very, very long.

Sometimes you have to decide if what you're doing is really for the good of the person or if you're doing out of guilt or purely selfish reasons (why would he feel that she HASto live with him, for instance).

Harry's picture

The whold purpose of the trip is to have family time.   Not to take care of SD,   You can find a care giver for the week to  take care of SD. SD is not going to like what a 3 yo likes   Why set up yourself for failer ,, Have a good time with out SD.  

REMEMBER, when SD was 3. She went on trips with out anybody else . DH. went with his ex and child on vacation.   Why don't you derive the same,  when you get stories about ,He just can't do anything.   Here's a case he actually can do something about it.   You and your family is just as important as the ex and SD 

AND I hope DH has caregivers come in to help with SD. THAT  You are not stuck careing for SD   That's not fair. If you leave how is SD going to be taken care of. 

la_dulce_vida's picture


Characterizing it as the OP being "stuck" with SD irks me a little. My DS28 is Autistic and he can be annoying and sometimes a pill. We all find him a little difficult sometimes: his dad, me and his 2 siblings. However, when they all complain about him going along on trips and adventures, I remind them that he is limited in the friendships he can develop. He will likely never marry or have children, let alone even have a girlfriend. He will likely never be independent enough to take trips around the world like they do.

Because of his limitations, he will most likely not have many of the "normal" life experiences that others will have. So, you betcha he's coming on trips and being included in things. Not everything. But he is not to be treated like a burden or an inconvenience, and left home with some babysitter while the rest of us go off and enjoy life. My DS28 is VERY high functioning. He just cannot drive and it would be difficult for him to travel alone.

I am not sure at what level the OP's SD functions, but if she's fairly high functioning, there is no reason to leave her behind.

And, I'm going to say it. The OP knew when she married her spouse that he had a child with special needs. If she was going to get the "ick" from having a special needs step child, she should not have married him. She should maybe see a therapist to get past her hard feelings for her SD. A group home might be nice, but you don't hide the former kids away somewhere to cater to the new family. It's stuff like this that backs up the evil stepmother stereotype.

Winterglow's picture

Group homes are. NOT for hiding SN people away! They are for giving them a decent life with friends, outings, activities, etc. They give them a real community.

stepmom444's picture

La Dulce Vide. I understand what you are saying. But there is no mention in your post about caregiver burnout and the affect it has on the entire family. For years. And on the marriage. Huge toll on the marriage. Huge uncertainty about the future and what retirement looks like. Caregiving into your seventies? Eighties? Also no mention of your DS's future care. His siblings? Therapy alone will not help here. I agree with Winterglow. My SS is extremely lonely all weekend even when he's with us, he likes to talk to people. His dad is his only "friend" and even his dad is burning out after years of caregiving.  He goes from being in a day program for hours all week to absolutely nothing on the weekends. 

Rags's picture

You and DH should not deny your children the things you are discussing because of SN SD-26.

I suggest that you engage support agencies with your State/Province (whatever applies) and get periodic support.  I would also consider looking into a residential group home facility for the SN Skidult.  One of my group home resident SN adult employeees had downs syndrome.  I know that the variables in Down's syndrome are broad and specific to each person, but, many can live expanded fullfilling lives with some level of independence.

It is time to get dad in a sit down and put together the quality of life plan for your SD that maximizes her experiences and independence and minimizes how her condition detracts from your young one's childhoods. SD is not a child. SN or not.

I wish there was some easy button solution for all of you that could make it all the best it can be.




Harry's picture

And there kids.  No one stuck them with a adult with down.  You as a second wife with your young bio kids deserve the same life SO had with his first family .   Expecally that you can't stand SD.  "" WHEN"'". your SO started this relationship with you and had kids with you . His second family deserves as much as the first Famiky got.  Vacation means vacation from SD