On Twitter (I should just leave Twitter), I have seen a lot of disdain towards parents who state their feelings. As a mother to a child with disabilities, I have watched in horror as it has been said by advocates that “we don’t care about what the parents feel, just the child”. When you say this, who does it help?
How Were People with Disabilities Treated in the Past?
Now bear with me because this will come full circle. Some of the infuriating classes that I had to take for my degree were African American Psych (I still have to write about that) and a class on the history of disabilities (I forget the formal name of the class). No, I am not disabled (although people are saying that bipolar disorder is a disability but everyone has an opinion, I’m not trying to muck the waters up) but, seeing the history in America of how people with disabilities were thrown away made my heart hurt.
They were seen as “less than”. Parents didn’t know what to do so they would send them to basically die in institutions. I really wish I could find the picture book that showed the conditions at some of these institutions and how they were mistreated. It was one in particular but I can’t for the life of me find it. This came from many things and ignorance was one of them. Frustration was another. Was it right? Of course not, but, many people didn’t know better. So society is trying to make gains in recognizing what is appropriate and inappropriate when it comes to disabilities. We learned about ramps and buses and it made me wonder how in world they could stand it. To not have access to things is frustrating. To not have access to things because of something you can’t control is infuriating. And to be basically told that they don’t owe you anything…. well, that’s just worse.
In my one sided conversation with the person that said their mother wanted to kill them, this is what I was thinking about. When you don’t know, you do some dumb things. Is it willful ignorance? I can’t say, especially back in the day. But we are making strides. With those strides, there will be growing pains. But the fact that needs to be acknowledged is that we are trying. It is a process. It’s a slower process than many of us want it to be but it is still movement, hopefully in the right direction.
I say this to say that there wasn’t support for the parents of these people with disabilities to help them cope. And I know people are going to get offended by the usage of “cope” but parents have to cope with the fact that their child is disabled. And when there is no support, the parent can become frustrated. And where can that frustration go? To the child. That’s NOT where we want it to go. THIS is why we should care about the feelings of the parents.
Parent with kids withOUT disabilities have problems raising their children so one would think that this an added layer of stress to the parent. The child is not a burden and we chose to have them but parents are people who have feelings too. If those feelings aren’t acknowledged and dealt with, there can be a lot of trauma inflicted onto the child.
My Story
I have spoken on this in my other blogs but, in the Black community, if your kids is “bad”, you spank them. So, when you don’t, you’re getting judged and looked at as a dummy when your child is overstimulated or frustrated and acts out in public. I have stated before that it was to the point that I literally stopped taking my daughter out of the house because I couldn’t handle the judgment. But, when I stayed home, my mother called me lazy not recognizing that I was already suffering from depression for other reasons.
In my blog about a physical fight I had with my daughter last year, I stated that there has been times in public where my daughter has literally raked her nails down my face and arms and drawn blood because transitioning was hard for her (I took her to a therapist so we could learn how to cope with these things and I could learn methods to make it easier on the both of us). She pulled my boob out at the pool because she didn’t want to leave her swimming lesson. People looked at me funny and one guy came to my car and said something to the effect of me having patience or something for not beating her. I let him know that she had a disability and basically that a spanking doesn’t always work for many kids.
I also had to learn to pick my battles. If my kid wants to walk out the house with mismatched clothes on, have at it. I’m not going to argue about it. No one is dying because of her choice of clothes. My mom really had a problem with this as she likes to control everything. With children with disabilities, your goal really is just to try to make everything bearable for that child and yourself. My own family thought that I was just making things up when it came to her screaming and sitting on the floor if she didn’t get something she wanted. So, as a parent, we are getting hit with it from a lot of sides. You’re getting judged by society that feels that you should “use the rod” and then you’re getting told by advocates for the child that your feelings don’t matter. I never have personally heard this in my daughter’s school EVER and I am thankful for that which is why I was extremely taken aback when an advocate said that especially because my therapist works at the ARC and would never say something like that either.
How Does This Impact Your Child?
It can put you in a bad place. It can cause resentment. This is something we do NOT want. I have been on receiving end of resentment from my dad especially when I was told that my brother and I weren’t wanted and that the only reason he stayed with my mother was because he didn’t want to pay child support. In my personal case, my daughter’s father doesn’t pay child support, doesn’t care to see her and blamed me and my “retarded ass child” for him “losing” his job. So let’s add onto that being a single mother. More judgment. You had sex and had a bastard child and it’s your fault. You are right, it is my fault. But I am laying in the bed I made. Now, add onto that any mental issues or traumas that the parent might have or even their own disability. Put all that together in a pie and try to understand how this can ALL be bad for the child.
You don’t have to directly care about the parent but you should indirectly care because all these feelings impact that child. Some of us don’t come from the best families and don’t know how to express feelings or really even be a good parent. It’s something we have to learn. I had to learn. People that read my daughter’s blog know that it was a process and it’s still a process.
These are the things I consider as a mother with bipolar disorder that is raising a child on their own and being criticized and viewed as “less than” for it. Again, this is not a “woe is me” post. It is actually just trying to get people to see from the outside what it’s like.
Support is Needed for the Parents for the Benefit of the Child
To have all these things piled on you not to mention working, doctor’s appointments, IEP meetings, etc, it can wear you down. As a parent, we have the right to ask for a little compassion and support. It’s not out of selfishness. It’s because we care about how our mentality will impact our child. We are not putting ourselves before our child, we’re putting our child’s very well being before ours. Many of us are doing our best to break cycles. I know I am. I hug my daughter all the time and tell her I love her. I didn’t get that much as a kid so I am not a hugger. VERY few people can hug me. I usually stiffen up otherwise. But my daughter and my nephew get all the hugs because I want them to know that this is acceptable. I tell them I love them and I mean it. I do my best to explain things to my daughter and it can be hard because she doesn’t sometimes grasp it and I get frustrated but SHE has taught me patience. People that knew me before I had her will tell you that I’m a different person. You change for your child but that doesn’t mean you can’t ask for a little bit of help.
In my case, people that have never even met my daughter OR I have been the biggest village and voice for her that I have ever had. THAT support is beautiful. And when I say it is beautiful, you guys don’t know the half of it. The support that my daughter gets for EVERYTHING is so heartwarming. My daughter has sensory triggers related to clothes and, certain clothes aren’t wearable. I talk about it in her blog. So sometimes I’m literally out here wasting money that I don’t have.
We found some sweaters that she liked and I got her some and I posted pics of her so happy about it (she loves Target as well so that was an added bonus). A woman that has never met me or my daughter literally sent me money to take her to Target. Kie got all the clothes that she wanted and happily wears them. This isn’t a small thing to me. It is huge because it lets me know that people do care about my daughter and I. That we matter to someone.
And that’s literally just one instance. She did the Buddy Walk. I didn’t really know if we were going to do it and, in less than an hour, she amassed a good chunk of money and encouragement for doing the walk. Things like this are beautiful to me.
People love to hear about her, love to see her live, love to read her blogs, all that. This makes me happy and this shows me that she and I are supported and loved. That is very important in a world that literally takes every opportunity to show hate and inflict pain on those that aren’t like them.
In the end, we’re all trying to cope with this world and our decisions. So, if someone asks for a little help or support, don’t shame them for it. Asking for help is better than many other alternatives out here that are very dark.
Thank you for reading. I have had a lot on my mind lately and I use this to get it out. Also, thank you to those that have been my “village” for my daughter and have had my back. It’s greatly appreciated and I couldn’t ask for a better group of people to have in my life. I love you!
Rantings of a Mad Woman 