Trust me, There is More Going on Than You Think

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So a couple of weeks ago, my husband and kids went to dinner after church. I stayed behind for a women's meeting. I got a text from my hubby saying my baby girl didn't want to cooperate and was refusing to eat. This isn't a new condition, sometimes she is just moody and doesn't want to cooperate, sometimes the medicine means her appetite isn't as strong during the day. I didn't give the text much thought and continued with my meeting.

When they returned from lunch, my son said a woman in the restaurant kept staring during their meal and it really aggravated him. He said they seemed bothered by the fact the Jalyn was simply sitting there and wasn't eating.

You see where this is going. When I asked my husband about it, he said they walked over to him and said: "We were just concerned, your daughter isn't eating." Way to state the obvious. We were just wondering if there was anything we could do to help.

Really? Um, I'm gonna go with no. He said they let it go at that, although they didn't seemed convinced.  And they totally freaked my son out. While he understood why they seemed so interested in what was going on at their table, he didn't like the staring.  He wanted to eat in peace.

While intellectually I understand the human need to interject oneself into a situation like this one,  it is still really aggravating. Do you really think we would bring her out in public and then refuse to feed her while everyone else is eating? Maybe she was just not feeling well, or she just wasn't hungry. And I don't feel I should have to explain it to you, because trust me, there is more going on than you think.

Having a special needs child has taught me not do jump to conclusions when I see certain things. A child yelling out in a movie or restaurant may not be the result of just bad manners. Or when you speak to a child and they refuse to make eye contact, maybe it isn't that they are being rude.

I know that people mean well, but from the perspective of a mom raising a special needs child, I wish people would think about it before diving in... cuz trust me, there is WAY more going on than you think.

Discipline vs. Disability

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So last weekend I had to grapple with discipline versus disability. Without going into a boatload of detail my baby girl got upset over something that seems trivial and as a result threw my iPod across the room, hard, denting my wall. She was going to the movies with my sister and wanted my husband to allow her to hold on to her money, something she has never been able to do. He told her he was going to give the money to my sister and... she lost it. 

I was at work and my husband was going to use the time that she was in the movies to get an oil change. We ended up having to send her to my mother and said that if she was able to calm down she could perhaps be allowed to go to the movie.

I was pretty torn by the decision, on the one hand if we didn't allow her to go to the movie once she settled down it would mean my mother would have to deal with her and her attitude about not being able to go. She'd already dented my wall and I certainly did not want to subject my mom to that. But at the same time we felt that she needed some sort of consequence for her actions, even though in her mind once the incident is over she has trouble understanding why the matter still needs to be discussed. 

But my little girl is almost 14, and as she grows into an adult, society won't care about her disability. If she breaks the law she will have consequences. If you can't hold it together at a job she will be fired. So if society expects that of her, isn't it my responsibility to try and teach her? We decided that she would not be allowed to play with any electronic device for the rest of the weekend. She accepted the punishment but of course that did not stop her from asking to play with my iPad. I tried discussing what happened with her and she immediately began to cry and insisted that she did not throw it very hard and that the dent was already in the wall ... uh-huh.  

I haven't recharged the iPod yet and part of me hopes it doesn't work. I know that sounds extreme but she also has to learn that when she destroys property it means she no longer has it to use and that mommy and daddy are not simply going to replace it. It was an old iPod, one that I allowed her to use because it gave me more control of her what she's doing.

I know that for my daughter things can be tough. She often has outbursts that she can't control and is generally sorry once it's done. But the world doesn't see it that way, and unless I find a way to get that through to her, adult life is really going to be tough. I think it's a bit sad that we allow adults with severe mental illness to make life altering decisions, but we do. And even though at 18 I'll be lucky if my daughter has the maturity level of a 12-year-old, she can decide that if she's angry with mommy I can't accompany her to doctors visits and won't have any control over whether or not she takes her meds. 

Our prison system is full of mentally ill patients who don't need a prison cell but therapy and serious rehabilitation. 

I try to refrain from being dramatic, and I'm certainly not saying that this incident means my daughter may one day end up in jail. But what I am saying is that when the world expects someone with a mental illness to be able to behave rationally and make rational decisions it's well, for lack of a better word, crazy! 

I don't know how much she understands about the punishment we gave her or if it will even stay with her. Her mind still works a lot like a five-year-old and as quickly as they are upset they are calm again and as far as they're concerned all is right with the world. But when she becomes an adult it won't be that simple and I'm hoping that I am still able to navigate her through what could be a difficult adulthood and help her find her way to success.