Guilt feeling of leaving autistic son at home

[TEWINOHIO]

Not sure what I am looking for, because I know I am the only one that can answer this. Guess I am just looking for moral support and the thoughts of others.

I am the single father of two children a DD13 and a DS12. My son Jonathan is autistic. He is not have major behavioral problems, as long as I manage situations properly. Something all of us with autistic children learn to do!! But it does limit the things we can do at times. So this is the thing, I have a trip booked to WDW in April 2007 for my daughter and I. I usually like to try to take a trip to Florida one a year to visit my mom, and leave my son with his mother. There are two major reasons I do this. One I have no idea how my son would do flying, and two it gives my daughter a chance to get all the attention since my son takes much more of my time.

This is going to be the longest trip we have ever taken. 10 days. 5 at my mom's and 5 at WDW. So what is the problem ( other than I am going to really miss my son ) I feel guilty as heck! This is Disney..he would love it! He would love the swimming, and he would love most of the rides (well the ones I would not be too chicken to go on!) and he would love just being able to walk around looking at everything!

Ok, so what to do? Does anyone else out there have a similar situation where they try to take their autistics child's siblings on special trips, and also give themselves a chance to relax "without constantly being on guard?"

 

[Tracy Savage]

My thoughts are that #1 It's a 2 hour flight. would it be that bad? 2. Your DD is 13. she knows how your DS is. Have you discussed it with her. She may be more grown up than you think and may give you some insight. Can you drive down? We live by Lake Erie,and I know it's a haul but maybe that would be better. Or call the airline and see if they have any advice. A less crowded flight time or something. You said yourself he'd really enjoy it so....maybe you answered your own question.

 

[Schmeck]

Why not take your daughter this year, and your son next year? Then they both get a special trip with you.

 

[Linnie The Pooh]

I totally understand the flight thing. My DS has a neurological disability similar to autism. I was scared to death to fly with him as he can be really difficult at times. Turns out he loves to fly and does great, but I know what you mean. If he has trouble, you're already on the plane, it's not like they can stop and let you off. It could make for a VERY long flight. Kids can be so unpredictable-all kids!!

I try to give DS special attention as my DD is very assertive and tries to get ALL the attention-it's kind of the opposite situation as yours.

We take both our kids on vacation with us. I would never think you are doing the wrong thing by just taking your daughter. It sounds like a really special time for both of you and she'll appreciate that when she's older, believe me. I just lost my dad this summer and those special times we had together are such precious memories.

There's nothing wrong with it. Go and have fun. Your son would love WDW, but maybe he can go another time. Try not to let your guilt spoil your trip-I know that's easier said than done though.

 

[mbb]

Go...relax, recharge, and know that your son is enjoying special "one to one" time with mom.

Your daughter may need this trip more than *you* do, and more than you realize. Siblings are often the 3rd parent to a child with special needs, and like you said, she may need to have a break from being on guard too

And, like Linnie the pooh wrote, perhaps you can use this trip as a little "advance planning" for a trip for all 3 of you.

Leave your guilt at home - and have a wonderful trip

 

[SueM in MN]

I agree with the others.
There are plusses and minuses to leaving your DS at home with his mother.
You have to look at the needs of everyone in your family and try to balance things.
Maybe taking a long trip with your DS would be too much for you to contemplate, but what about a shorter trip? Maybe that would be do-able and maybe your DD would feel like she would really like him to be with, even if it limits the things she is able to do? I guess I'd say, get as much info as you can and then weigh the pluses and minusses again. But, whatever you do decide, don't feel guilty. You are doing what you feel is the best for your whole family.

 

[SueOKW]

We've achieved a pretty good balance here about who get to go where... Kev get a lot of attention, but on the whole his behavior is predictable.

I agree with giving each kid some "special time" alone. Maybe you could spend 2 days at Cedar Point with your son next year!! Or do one of the indoor swim parks in Sandusky to help assuage your guilt feelings?

 

[TEWINOHIO]

Thanks everyone for your thoughts. You know, another trip might be a great idea. Maybe in the off season. Probably spring break would not be the best time to take him. But a shorter trip during the off season where we would spend less time at the parks because of the heat, and more time in the water would be good!

I know if I asked my daughter she would say "it's ok daddy, Jon should be able to go too." She is very mature and gracious. But there are things we could not do that we have planned...like the dolphin swim at Discovery Cove.

It is a great point about a sibling being a 3rd parent. And that is something I need to keep in mind too. When I say that I am a single father, I do not mean weekend dad. I am residential parent. So being the three of us during the hectic weeks, she is always looking out for her brother too. So she does deserve the break too!

Thanks again for your thoughts!

 

[cindy17]

Your post really caught my eye. We just went through a similar situation this past summer. I have 2 boys, 12 and 14. My 12 year old is autistic. In August 2005 we had a pretty disastrous WDW vacation. He started this really aggressive streak and would basically lash out at anyone that got in his way. It got pretty ugly! Anyway, after that we promised our 14 year old that next summer he could go away with his Dad to Cedar Point. Fast forward to this past August and they had the best trip to Cedar Point -- just the 2 of them. I think my husband felt really guilty, but he realized that we couldn't let our 14 year old miss out on so many things because his brother just can't handle so many activities anymore. It's very sad, but in all honesty I really enjoyed those 4 days alone with my autistic son. We had to tell a little white lie that Daddy was on a business trip and his brother was at Boy Scout camp (two things he knows he doesn't participate in), but it worked out really well for our 14 year old. He had a blast!

It's hard to go places alone with our 14 year old son -- one of us always has to stay home with our autistic son. We don't have any family or other sitters to stay with him, but we also have to remember to do some fun things with our "typical child". Maybe next summer, I'll take my 14 year old to WDW. I'm not sure, though. After about 5 trips going as an entire family, it will be really difficult emotionally for me, but much appreciated by my son.

Have a great trip!

 

[TEWINOHIO]

Thanks cindy17. I really appreciate you posting your story...

And thanks to everyone else. I think I will try to plan a trip for my son later next year (if the money is there to do it.) Take my DD with us with the unerstanding that this is her brothers trip and have her help plan what we do. She will appreciate getting to share it with her brother. I would have to take her (or someone else) because I am paranoid about traveling that far away from home with him if something would happen to me, and him not being able to tell people who he is or who to contact, etc.

Like I said..she is very mature and gracious and it would be a great bonding activity for the three of us as well!

 

[Linda Bell]

I am paranoid about traveling that far away from home with him if something would happen to me, and him not being able to tell people who he is or who to contact, etc.

Me too as I have a very handicapped daughter so I found a wonderful medical ID place:
http://www.petitebaublesboutique.com/store/Default.asp

They allow up to 4 lines on the front and the back so that I could do contact info, and tell them my daughter had mytonic md,her blood type, let them know she is learning disabled, and allergic to penicillin and so on. Now if I'm run over buy a bus they will at least know all the particulars...

They have boy style stuff too.

Linda

 

[TEWINOHIO]

Thanks Linda!

 

[AJKMOM]

When someone is a single parent, and splits caregiving of a special needs child, they need a break even if they aren't 24/7 on duty. For DH and I, we go to the casino, sometimes overnight. We are lucky to have 2 older kids who help with DS17, with autism. Everyone needs a break, or they will go nuts. No flames from us, have fun and QUIT FEELING GUILTY!

 

[disneygal66]

I agree with the rest of the posters. A trip with your DD is a break for all of you and if your DS is being taken care of by his mother, then you should not feel guilty. I would imagine that he and his mom enjoy their time together too. There are alot of things we can't do as a family because of my DS 6 who is autistic. Sometimes I just wish we could leave him with someone and take our our 2 DS, but we can't yet. He is way too much for some one else to handle. So go to WDW gulit free and maybe take both kids in the off season. We usually go in the off season and my DS does pretty well with lower crowds and less time in line and the GAC.

 

[dzorn]

Don't feel guilty. We all need a break. Hopefully Mom has one planned with daughter also. That would give you one on one with DS.

Denise in MI

 

[Kay1]

Sorry, I feel bad for the boy. I hope you'll reconsider. Maybe your doctor could prescribe medication for the plane ride. I'm not flaming you at all, but I believe we should listen to our inner voices. If you're feeling guilty now, there's a reason and it's possible you'll feel worse in the future.

 

[amberdansmom]

I may be the "outsider" on this but here goes... My DD is 8 and my DS is 7. My DS is Autistic my DD is not. Our whole life as a family has been built around Daniel and his issues. That is just life with an autistic child. My daughter understands. We do have special time just me and DD and just me and DS also just DD and DH and DS and DH. It is VERY important to do that...often. It makes life with a special needs child so much easier and gives the "typical" children a better understanding and patients about it. HOWEVER... We will be going to WDW come December. this will be our third time. 1st time flying (we usually drive) and 1st time staying at a resort for an extended time. My family is in Florida... Tampabay area and we try to make it there once a year like you and when we do we make a day trip to WDW. I would NEVER think of leaving my son just because of some issuses he may have. How do you know how he will react to a flight if he never goes? Yes, he is Autistic, yes he will love the specail time with his Momma... most importantly yes he will be sad and even heart broken if he knows you two are going there with out him. Don't you think he might feel like he is being punished for some reason for something he doesn't remember doing? How would you feel if the roles were reversed? I am on a rant and this is one of the reasons I try not to come to this part of the board since I am so passionate about the subject. I will end on this... Most importantly, first and forthmost he is YOUR son. You should go with your heart not your mind. You will regret not listening to your heart in the future.

 

[amberdansmom]

Thanks cindy17. I really appreciate you posting your story...

And thanks to everyone else. I think I will try to plan a trip for my son later next year (if the money is there to do it.) Take my DD with us with the unerstanding that this is her brothers trip and have her help plan what we do. She will appreciate getting to share it with her brother. I would have to take her (or someone else) because I am paranoid about traveling that far away from home with him if something would happen to me, and him not being able to tell people who he is or who to contact, etc.

Like I said..she is very mature and gracious and it would be a great bonding activity for the three of us as well!

If you do take this trip to WDW with your daughter for special one on one time and then take your son later next year for his special trip, why would your DD go? Your DS didn't get to go on the special trip with you and your DD I bet he would appriciate getting to share and help plan the special trip with you and her just as much as she would for him. It just seems very one sided and I feel so bad for him.

 

[mbb]

No, I don't think you're the outsider here at all

That's what I think is so great about the DisAbility Board - people who need support but can't get out to meetings, or just need an opportunity to share what's going on in their lives, have an easily accessible forum to do so.

And being passionate about kids is what makes you a great parent, and your compassion for other's kids shines through

We walk on the road of parents that have gone before us, and we prepare the road for those coming after us I like to think that expressing all those viewpoints makes all of us a little better along the way, as we walk it together

 

[TEWINOHIO]

I agree that these boards are great for support for all of us. All situations are unique. All individuals on the spectrum are different. And I appreciate everyone's individual constructive opinions, Lots of great ideas were presented to me here that helped me think through the issues I am dealing with emotionally.

But there is a big difference between support and rants and raves about and individuals personal feelings. Especially when they do not know me, my son, nor my family. Statements like "he will think he is being punished" when the person does not even know if my son has the capacity to understand.. " oh daddy and sis are going to WDW"

That is how these boards, that are suppose to offer support, so often become "flaming." Fortunately I appreciate the good ideas and solutions, and even more fortunate...I can tell the difference.