"How do other families of children with special needs have fun?" asks a mom. "When we're out things tend to feel like work, and I feel alienated from other families. I have many examples: All the kids will be in the pool or at the playground with the parents socializing, but I'll be busy assisting my 8-year-old son. Or all the other kids will be eating together at meals or at birthday parties, and he'll be sitting with me so I can assist with eating as I try to fit in conversations with adults but not exclude him. If we go to amusement parks as a family, to do a family ride we'd have to leave him with another family member, and the guilt I feel takes the 'fun' out of it. I don't mean to say we never have fun—we do!—but overall, the feelings of fear, worry and guilt always seem to get in the way. I'd like to hear how other families find the fun."
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I have no real advice - just want to say this is an excellent question and you're not the only one feeling it. Hope others have some thoughts.
ReplyDeleteI don't really like my answer as I am typing it but here it is anyway. It has been a lot of exhausting, hard, mind bending work. When we eat with others I plunk myself right down with the kids so that my son is with the children and I can help him (BUT I also do my best to be the most fun and A-mazing mom ever so I don't get shunned from the table and my kids are welcomed). When we go anywhere new I research every possible everything ahead of time so that I am completely prepared. I make stops that don't put us too far behind the group (because I know where they all are). I know what will be accessible and what isn't and already have a buddy for my daughter so that we can separate without a blink. I keep the kids who want to hang back (because remember, I'm the fun mom) and half the time the other parents would rather hang back as well. I can make just about everything fun while I cut food, find a bathroom, a ramp, take a fatigue break... But it is not easy to be on all the time. It's not always fun to be fun all the time. It's hard to find the energy to pave the way for my family that doesn't fit any mold. After 14 years, I have found people who know how to help support us along the way. We take turns being super fun for our kids and making sure that everyone waits for everyone else to be included in their own way.
ReplyDeleteI guess my answer more simply would be, I put myself out there. I didn't shy away from the people who I loved and loved me and we are finding fun in our own way that works.
Sorry I'm not much help either. Just wanted to let you know that I pretty much could have written this post myself regarding my 8 year old. You are not alone. I definitely have the same feelings of fear, worry and guilt but not as much as gen he was younger. I honestly try not to think about them day to day (sometimes they creep up and I'll have myself a good cry) but for the most part I realize this is our reality and we are doing the best we can. My son is loved and cared for and that's the most important thing.
ReplyDeleteWith family events: tell your family this, or have the most-gossipy cousin/aunt spread around the news that you'd like company/hell with DS. Eliminate the kids table, spread kids everywhere. Make things more intergenerational. Encourage kids and teens and family to help you.
ReplyDeleteConsider bringing along a personal care aide/helper/nurse on family outings. If you have a really good one they can do the caregiving while you have fun.
Find amusement parks that are more accessible, or if your family really loves them but your disabled kid can't do anything there, go in a day he is at school or leave him home with a caregiver doing what HE loves to do. Not all family members like the same activities!
Check out universal access / accessible sports programs, they often include the whole family.
Oh, and see a therapist. Seriously. Obsessing about this stuff and guilt tripping instead of day tripping isn't any way to live.
Um. I meant help above in the first sentence. Not hell.
DeleteI've been having these exact same feelings recently and have an entire rantly blog post saved in my drafts begging for help on this issue. Excited to see what other moms have to say.
ReplyDeletePaige
http://thehappyflammily.com
The short answer: it’s a lot of work to “have fun” when your family has a special needs child, which you already know! I’m the grandma of an eleven-year old, non-verbal boy on the autism spectrum. His parents, just as you, have to assist him with everything. He needs help with eating, assistance with walking (he can walk, but has trouble with obstacles, uneven terrain, steps…), and so on. My husband and I try to assist whenever we can if we go out to dinner or if we’re at a function with them, so that is one suggestion – to have someone else who will help you on outings, dinners, amusement parks, etc. However, I know you would like to just “be a family” sometimes, just like all the other typical families out there, and my best advice for that is to find something to do that your son really enjoys and make it all about him. For example, my grandson loves covered bridges, so his parents will take him and his typical younger sister on a drive to one of the several covered bridges in our area and let him enjoy it to his heart’s content. He’ll walk the length of it, back and forth, just laughing – at what, we don’t know, but he loves it! On the ride there or on the ride back, they’ll get his sister a milkshake (our grandson can’t have one, due to a special diet, but it makes the outing a little “sweeter” for his sister). Now, they’ve had some family time, with the focus on their special needs son, so now it’s time to have some fun with the typical daughter, and if that means the son has to stay home with a caretaker or the grandparents, then that’s what happens. And, yes, there may be some feelings of guilt, etc., because this isn’t the way you want it to be, but this is the way it is. Our daughter and her husband have gone through many frustrating times, because sometimes even the fun outing for their special needs son will go sour, but they still try, so I know how hard it is. It’s hard and it’s sad and many tears have been shed. And since they try so hard for him, they also try hard to make sure their daughter gets some special times, too, and sometimes that means their son doesn’t take part in some family activities. I wish I had a better answer, but the reality is that it’s hard work. Just do your best and try not to take on the guilt.
ReplyDeleteas a person with a disability If they can't do all the activities plan something they can do maybe maybe a couple other kids are not joy seekers and might join the child Ok Ill give you example when I went to Disney world back in the 90s yes that's dating me but I went with Girl scouts they all wanted to go on roller coaster I didn't I was highly anxious there were a few others who felt the same way so we rode go carts that we all rode a ride but and were happy with the arrangement
ReplyDeleteWe've done several trips with https://autismontheseas.com/. Their planning and support made it possible for everyone to enjoy the cruises.
ReplyDelete