When your kids a beyond the norm, you have to adapt. There is the obvious rigorous schedule of meds, therapy, stretching, speech exercises, feedings and freak out. But there is more. Over the years, I have noticed that parents of kids with special needs have a common thread with another part of our society. I have known many cops, emergency room personnel, even a couple of medical examiners. We all have a similar sense of humor. There are so many dark words outsiders describe it. Morbid, saturnine, lugubrious. I call it coping. It's something that you keep amongst others in your circle of other parents in your situation. We keep the joking about her getting her driver's license before potty training to the waiting rooms of physical therapy and other "safe" places. Not long ago I was met with a poor response when I posted this photos on Facebook. I found the caption ...
Category Archives: Dealing With Public Perceptions
Freedom Hopes
This Fourth of July week I’ve been thinking a lot about the word ‘freedom’ as it pertains to my children with significant disabilities. It’s not flags and fireworks I’m thinking about, but rather the freedom of choice. I want my children to be able to make choices, to live life their own way. I want them to have the freedom to… • Choose where they want to live and how they want to live • Choose the type of job they want • Make choices about the type of social life they want • Choose their friends, fall in love, enjoy a sexual relationship, and know the comfort and joy of sharing life with the person of their choice • Speak their minds, have opinions, and have those opinions respected • Vote • And the list could go on and on…. In other words, I want them to ...
I’m different too!
I feel like I no longer have to pretend that I am the same as any other mom walking down the street. Because to be honest, I have spent an awful lot of time trying to convince myself of that. “Hey, I’m the same as you. I’m no different. I want the same thing for my son as you do for your children.”
Your Thoughts?
I need your advice. This past weekend, my boys and I took a trip to Baltimore and left Ashley at home with her aide. The aide has been with Ashley for five years, so I am quite comfortable with the two of them spending the weekend together. Here is a picture of Ashley and her aide: Halfway through our tip, I check my email and see a Facebook friend request from….Ashley! Although I have a Facebook account, none of my children do, or did. I accepted the friend request, and then went immediately to see what Ashley’s Facebook page looked like. I found about a dozen pictures of her that the aide had uploaded. I found information about the city and state in which we live, the high school that she attends, and I found Ashley’s birthday. I ...
Beach Chickens
One of Ashley’s favorite things to do at the beach is to feed the seagulls. I’ve taught all my children from a very young age how to throw food to one seagull, and almost instantly 20 more will appear. We’ve fed them from hotel balconies – we’ve fed them while we were on the beach – we’ve fed them in the mall parking lot - and one of our all time favorites, we’ve fed them while riding the ferry from Hatteras Island to Ocracoke Island in North Carolina. Depending on the location and how familiar the gulls are with people, we can sometimes get them to take the food right from our hands. I have found, however, that not all people enjoy a flock of gulls circling above their heads. My family has had lectures from others about how nasty the birds ...
Definitely NOT a Poor Thing
Why do most people say “awww, poor thing” when I tell them of Ashley’s significant disabilities? I admit that when I list all her issues, it might seem like she has a daunting job just existing each day. But I honestly don’t believe, and I think Ashley would agree with this assessment, that her life is anything requiring pity. She has learned to adapt her world to accommodate her disabilities, and she is doing a fine job, thank you very much, of living life her way. Ashley likes people who challenge her. The one word that absolutely does not describe Ashley is compliant. Does that mean that being her mother, her aide, her siblings, or her friends is a difficult job sometimes? Yes, indeed. Does it mean any of us would have her any other way? Definitely not. Ashley’s strong will, her ...
Those Who Understand, and Those Who Don’t
I read a post yesterday from one of my favorite bloggers, Jess at Connor's Song. While the post was primarily about Jess's nesting instincts and the new daughter she and her husband are adopting, she shared some of the comments people have made about that adoption. Those comments, most of them insensitive, really struck a chord with me because I also have gotten more than my fair share of such comments about my adoptions. But interestingly with my latest adoption of Ronnie, I've gotten almost no comments, and I'm not exactly sure why. Do people think I have finally lost my mind completely? Have they run out of comments about adopting older children? Or, are they uncomfortable with the fact that Ronnie is African American? (I do live in the South). I know I have complained in the past like Jess has done in her ...
When autistic behavior is misunderstood
Update: Since the post was written, Smockityfrocks has issued an apology. I believe that it is a sincere apology. While I wish the overall situation here hadn't been so hurtful, I am proud of my fellow special needs Mamas who had the courage to stand up and advocate. If you choose to leave a comment on this post, I ask that you do so with respect. As Jean writes, 'hurling insults is NOT a way to advocate.' ~Tammy and Parker Editors, 5 Minutes for Special Needs ____________________ Parents of children with autism often have a difficult time going out in public. It can be hard to manage a special needs child's wants, needs, and reactions in an unpredictable environment. It can be hard to teach your child about social skills while you are in the thick of trying to control their unconventional behavior. But ...
Compliance
Compliance – no, not the legal kind – the kind that is expected of our children with disabilities. I feel that the level of compliance expected in our school systems for our children with disabilities goes well beyond what is expected of non-disabled students. One of my children is in gifted educational programs. He is rewarded for, and actually expected to demonstrate critical thinking, creativity, and questioning that which is considered the norm. If he doesn’t fully investigate a subject, view it with a critical eye, and then develop a conclusion based on creative thinking his grades reflect that. However, if he questions traditional thought and is innovative with his conclusions, he is rewarded with a good grade. On the other hand, my child with a significant disability is not allowed to explore her classroom assignments in the same way. My child with ...
Never is not in our vocabulary
One of my newer co-workers came into my office yesterday and saw pictures of my children. He asked about them, and being the Mom that I am, I went on and on. He’s probably sorry he asked. However, one comment he made really threw me for a loop. He said in reference to Ashley, “It’s just so sad all the things she will not be able to do in life.” I was in shock for a moment, and my weak response to him was “Of all the words I could use to describe Ashley, sad is not one of them.” He soon left my office, but I spent most of the evening and half the night thinking about his comment – that’s probably because I have never really thought about what Ashley will not be able to do, but rather, I celebrate everything she does do, and it’s a very ...
