I was cooking dinner for myself while Dear Son took his after school nap. Dinner is a bit of a lonely exercise, cooking for one. I don’t eat many processed foods, first because they aren’t that great for you and second, because they don’t taste very good, hence the cooking a real meal instead of a microwaved one. I am pretty simple in that regards, I just like real home cooked food. I never cooked for many years and took up cooking a few years back. Now I rather enjoy cooking, but now that Dear Son can’t eat real food, it’s not the same. For many months, I didn’t cook after he wasn’t able to eat real food because it seemed mean to cook food and let him smell it but not eat it anymore. I understand why he can’t eat and he has some real swallowing issues, to the point where he doesn’t even want a drink of any kind anymore by mouth. I am finally o.k. with him not being able to eat, but sometimes, I’d just like to cook dinner for him. But it’s not just dinner really. It’s that sometimes I want to do "normal" stuff. Things other people take for granted.
There are so many things sometimes that people don’t think about, that it would be nice to do. Like, it would be nice in the evening, if I had to run to the grocery store, or go to the library, that I could just get Dear Son in the car and go. Just have him walk to the car, get in and leave. That’s it. I wouldn’t have to pack any bags, change any diapers ahead of time, or do anything. Just get in my car and go. I can’t really leave for errands anymore or for anything really with him, without some assistance now but that’s not even the point. The point is that it would be nice just to be “normal”.
The other day I was talking to a woman, who had purchased a gift for her daughter’s friend’s birthday. She was saying that it was getting expensive to buy birthday gifts for all of the friends. She didn’t know anything about Dear Son and I didn’t say anything. It was the kind of conversation that you have with a stranger in passing, one that doesn’t require all the details of our lives. I listened and just kind of agreed that things were more expensive. I can’t remember ever having any of Dear Son’s classmates over to our house, ever, because it’s just too hard. We’ve never had a birthday party with kids from school or his friends, nor have we ever been invited to any with his special needs classmates in fifteen years. I do have a cake made and send it to school but when that woman said that, I thought to myself, that it was a “high class” problem she had. She didn’t realize it of course, because that was her reality. It wasn’t wrong for her to think that way and it was probably true. It’s just that when your kids are special needs, you always have bigger issues than nearly everyone else. Always. We just don’t talk about it much.
The other day, I was at a corporate client who specializes in caring for special needs children; they perform both respite care and transition care for children who are able to leave the hospital but perhaps the parents or caregivers need additional medical training in how to care for their children’s medical needs-namely vents and trachs. One little girl had just arrived. She was a foster child and brought in by her foster parent. She was frightened at first and not sure she should trust any of the adults but, more importantly, wasn’t sure she could trust the other little girls that were staying there as well. She had this look of fear on her face, then she might give a quick smile, followed by the "fear face" again. The staff member tried to make her feel more comfortable saying she was here for her very first sleepover, to which I added, that she was on a “big girl” weekend. Her father proceeded to make umpteen trips to the car to get all of her “supplies” and things. She was only four or so but had never been around any children and had no siblings. She hadn’t been around any other children, because kids don’t come over to the house. They don’t come over because, it’s just too much work. I wrote about this issue some time ago here. I imagined for a moment how different she might be, if she had more interactions with other children. I imagined how it might affect her self esteem, her personality and her overall development. I imagined how it impacted all kids like her. If we had daycare for special needs, and integrated them in with normal kids, it may not be an issue at all. But they aren’t normal and they don’t do normal stuff. Other kids get to sleep over at a friend’s house, special needs kids sleep over at a Respite House with people they don’t know. I have a friend in another state that has two normal kids and one that is special needs. When they go away for a day, the normal kids stay with their grandparents and the special needs child comes with them or goes to Respite care. That’s the way it is. It’s not a bad thing, it’s just different. I am not sure you could have another special needs friend sleep over. Not only would it be too hard, I think another parent would think you were totally nuts asking if their kid could stay at your house, because it's just not "done" for special needs. And I can’t imagine having the pressure of making sure that I could meet all of the kids special needs, let alone the liability factor. So much for the normal stuff.
This weekend, a family member is having a cookout on Sunday for Memorial Day. Dear Son and I were invited however I am not certain I can lift Dear Son in the car anymore so I am having to figure out some options. While it’s possible that his Dad could take him for the evening so I could go alone, I don’t want Dear Son to miss out on a family outing. He would really enjoy himself and they would enjoy seeing him too. It’s possible that Dad will come over and attend with us, which would make it easier, since he has an SUV and the wheelchair fits in the back and Dear Son fits better in his car, let alone Dad’s big muscles to lift him into the car. Those 21 inch biceps come in handy for that. The family member offered to switch the cookout to another weekend, when I didn’t have Dear Son, to make it easier for me so I could attend, but I declined. I’d rather Dear Son attend and enjoy the day with us.
But it’s not about solving all of the issues that we face with our special needs kids. It’s about wanting things to be easier, for us and for them, for just a day or just a moment in time. Things other people take for granted. And just once, I’d like to complain that it’s too hot to sit on the bleachers and watch him play soccer.
There are so many things sometimes that people don’t think about, that it would be nice to do. Like, it would be nice in the evening, if I had to run to the grocery store, or go to the library, that I could just get Dear Son in the car and go. Just have him walk to the car, get in and leave. That’s it. I wouldn’t have to pack any bags, change any diapers ahead of time, or do anything. Just get in my car and go. I can’t really leave for errands anymore or for anything really with him, without some assistance now but that’s not even the point. The point is that it would be nice just to be “normal”.
The other day I was talking to a woman, who had purchased a gift for her daughter’s friend’s birthday. She was saying that it was getting expensive to buy birthday gifts for all of the friends. She didn’t know anything about Dear Son and I didn’t say anything. It was the kind of conversation that you have with a stranger in passing, one that doesn’t require all the details of our lives. I listened and just kind of agreed that things were more expensive. I can’t remember ever having any of Dear Son’s classmates over to our house, ever, because it’s just too hard. We’ve never had a birthday party with kids from school or his friends, nor have we ever been invited to any with his special needs classmates in fifteen years. I do have a cake made and send it to school but when that woman said that, I thought to myself, that it was a “high class” problem she had. She didn’t realize it of course, because that was her reality. It wasn’t wrong for her to think that way and it was probably true. It’s just that when your kids are special needs, you always have bigger issues than nearly everyone else. Always. We just don’t talk about it much.
The other day, I was at a corporate client who specializes in caring for special needs children; they perform both respite care and transition care for children who are able to leave the hospital but perhaps the parents or caregivers need additional medical training in how to care for their children’s medical needs-namely vents and trachs. One little girl had just arrived. She was a foster child and brought in by her foster parent. She was frightened at first and not sure she should trust any of the adults but, more importantly, wasn’t sure she could trust the other little girls that were staying there as well. She had this look of fear on her face, then she might give a quick smile, followed by the "fear face" again. The staff member tried to make her feel more comfortable saying she was here for her very first sleepover, to which I added, that she was on a “big girl” weekend. Her father proceeded to make umpteen trips to the car to get all of her “supplies” and things. She was only four or so but had never been around any children and had no siblings. She hadn’t been around any other children, because kids don’t come over to the house. They don’t come over because, it’s just too much work. I wrote about this issue some time ago here. I imagined for a moment how different she might be, if she had more interactions with other children. I imagined how it might affect her self esteem, her personality and her overall development. I imagined how it impacted all kids like her. If we had daycare for special needs, and integrated them in with normal kids, it may not be an issue at all. But they aren’t normal and they don’t do normal stuff. Other kids get to sleep over at a friend’s house, special needs kids sleep over at a Respite House with people they don’t know. I have a friend in another state that has two normal kids and one that is special needs. When they go away for a day, the normal kids stay with their grandparents and the special needs child comes with them or goes to Respite care. That’s the way it is. It’s not a bad thing, it’s just different. I am not sure you could have another special needs friend sleep over. Not only would it be too hard, I think another parent would think you were totally nuts asking if their kid could stay at your house, because it's just not "done" for special needs. And I can’t imagine having the pressure of making sure that I could meet all of the kids special needs, let alone the liability factor. So much for the normal stuff.
This weekend, a family member is having a cookout on Sunday for Memorial Day. Dear Son and I were invited however I am not certain I can lift Dear Son in the car anymore so I am having to figure out some options. While it’s possible that his Dad could take him for the evening so I could go alone, I don’t want Dear Son to miss out on a family outing. He would really enjoy himself and they would enjoy seeing him too. It’s possible that Dad will come over and attend with us, which would make it easier, since he has an SUV and the wheelchair fits in the back and Dear Son fits better in his car, let alone Dad’s big muscles to lift him into the car. Those 21 inch biceps come in handy for that. The family member offered to switch the cookout to another weekend, when I didn’t have Dear Son, to make it easier for me so I could attend, but I declined. I’d rather Dear Son attend and enjoy the day with us.
But it’s not about solving all of the issues that we face with our special needs kids. It’s about wanting things to be easier, for us and for them, for just a day or just a moment in time. Things other people take for granted. And just once, I’d like to complain that it’s too hot to sit on the bleachers and watch him play soccer.
12 comments:
me too! ....and complain about how many soccer teams he's on and how I have to drive him all over town for his activities.
Absolutely. I wish that for you, too. That for a moment, you could complain about normal things.
I think that's one of the reasons I like blogging, and the internet. Here, I've found a community where people talk about their _not normal_ lives in such a way that it _almost_ feels normal.
Thank you for writing your blog.
It can be awfully hard to do stuff like sleepovers and trips. When I was epileptic it kind of freaked out parents so we always had to do a lot of explaining and stuff like that. When I got older and had the cystic fibrosis stuff it wasn't hard as much as it was a pain to lug around...some of the machines can be big! And some items need refrigerated, etc.
The things I found hard was the reactions from people that should've been "Used" to it, like my best friends. I would do aerosol treatments and stuff and I'd get questions like "how much longer are you going to be?" in these rude tones, or weird looks when I go to give myself insulin shots. I guess it's just part of the territory.
Another truly great post. You never disappoint.
I think my favorite line is, "It's not a bad thing, it's just different."
Same place, different reasons. Little Man truly enjoys other children, but he is very unpredictable and he can be very mean and difficult. He has only ever been invited to one birthday party and doesn't have any real friends. I suppose I could make arrangements for a play date, but honestly? I am just too tired and worn out trying to take care of him. That takes more energy than I have right now. It still makes me sad and I sometimes wish it were different. Thanks for a good post.
Great post Dream Mom I think you hit on a lot of issues most of us with special needs children have experienced.
I absolutely LOOOOOOOVE this picture of Dear Son!!!!
I love the photo of Dear Son - the expression on his face is one of pure joy. Beautiful.
Having a child with special needs really is a paradigm shift, isn't it.
Thanks for writing this post. It's great to read the thoughts of someone who understands.. My son's needs are moderate (Down syndrome, with some additional complicating medical issues). I try to live by the philosphy of "treat him as you would any other kid" - because he is first and foremost a kid, my kid. But things are different too.. and I hate to talk to my non-special-needs-kids friends about the differences. I'm not complaining but it's a fact of life we live with in our family. (p.s. I love your blog & your son is adorable)
Wow! Sometimes I am so caught up in meeting my son's special needs, that I forget how "not normal" our lives really are. Feeding tubes, meds, breathing treatments...all routine for us, and our reality...but normal??? Anything but!
Thanks for your thoughtful post.
Take good care,
Heesun
Me too, me too.
This is a wonderful post. Firstoff, I want to acknowledge that we are nowhere near being in your position...our daughter is a nearly one year old micropreemie and from a developmental standpoint is doing very well so far. Her issue is an eating issue and a care issue---she has no special equipment (having come off of home oxygen in March) and other than, at least until recently, not taking any solid foods, her major constraints are that she drinks poorly (she has a very sluggish suck) and very little at a time and that she refluxes a lot, which means many potential vomiting/choking episodes, and requires many small feedings a day, which for us is measured in a 24 hour period. One or the other of us is up round the clock with her. A recent abortive attempt to leave our daughter with her Aunt and grandmother, who simply couldn't handle things (they thought they could but they had neither the drive nor the stamina to provide the care we do), landed our baby in the hospital for dehydration. We're obviously never leaving her with them--or with anyone but a nurse we trust--again. And the thing of it is this: for us, this is probably temporary, or at least we are hopeful that it is. For you this is a way of life. My heart goes out to you and I wish that others out there could even begin to comprehend the reality of parenting for some folks, and could begin to have the kind of empathy and sensitivity that you evince in your blog.
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