To the kids that don’t think my son is good enough

I’m sure you didn’t mean anything mean by it. I’m sure you were just bored, and decided to go home, where you can run and act like kids. I get that, I do, BUT, when you leave a child sitting in his yard, without saying a word to him, simply because he is different, and maybe can’t keep up with you, and tries to get you to do things that he CAN do, it makes me angry.

Anger is a secondhand emotion. I get angry because you hurt my baby, and that hurts me. See, I know why I feel the way I feel, so it’s all good, I’m still sane, and in control. Now, when you have done this repeatedly, and I have run out of excuses that will take the hurt out of my baby’s eyes, you’ve gone beyond making me angry. You’ve pissed me off, and you really don’t want that. You see, I don’t raise  my children to treat others poorly. Sure, they do things sometimes, and I talk to them, ask them how they’d like it if the roles were reversed, and try to help them figure out how to fix their gaffe. That’s learning, and growing. I also teach them to defend each other, and themselves, and while people say sticks and stones, my children know that isn’t true.

Words and actions hurt far worse, with longer lasting effects, than a punch or kick ever will. You see, with every look you’ve given my son, every time you’ve ignored him, or told him an idea of his is stupid, or that something he has is not cool, or whatever, you have told him that he is LESS. He is less human, less worthy, less fun, less normal, just LESS. For a child who already has so many issues with socializing, and trying to be normal, when his brain and body weren’t made to fit into the box that society has deemed acceptable, these messages slowly break down his every sense of dignity and esteem that he feels. No matter how hard I try to lift him up, praise him, tell him how amazing he is, I am his mom, and we all know that moms all think their kids are amazing, and awesome, right?

He wants, no needs, the verification that he’s good enough from other kids, so for you to treat him like less than a dog, no matter how unintentionally you may have done it, it’s not okay. How would you feel if the roles were reversed? How much would you like having a body that struggles to do the most basic things, like walking, or running, or standing back up, not to mention all the other issues muscular dystrophy has blessed him with? How would you like having a brain that makes the things others say may no sense to you? For everyone’s words to jumble together, so that you can’t make sense of what is being said? How would you like being left behind when your brain and your body simply can’t keep up? How would you like it if the child being left behind were your baby in a few years? Not so much, right?

I’m sorry, I would love to give you another chance, but, you see, as I’ve explained, my son wears his heart on the outside, and you’ve already hurt it too many times for me to trust you with him again, so this is the end of the line for you. Sure, it sucks, but I won’t let the fact that there aren’t many kids in our neighborhood force me to allow you to hurt my children. I would much rather they keep the friends that they have, that treat them with respect and dignity, and see past the differences, than to allow one more tear to fall because of ignorance.

My hero, and his biggest defender

My hero, and his biggest defender

Sorry, I had to vent it this way, or else I might go confront some ignorant adults down the street, and figured there were plenty of people who have dealt with this themselves.

About that “Mom” who wishes she’d terminated her 47 year old son

Please click to read article, or this entire post may not make any sense to you 🙂

Mother wishes she’d aborted 47 year old Downs son


This makes me unbelievably sad.
It’s not easy caring for a special needs child, and I know that some women can’t face the idea of it, and make the choice to terminate. I don’t understand it, but I know it happens. I don’t speak out on abortion, usually, because I completely disagree with it for myself, but, again, I know it is the parents’ (not just the woman’s) choice and choose not to enter into the semantics of it.

I think every child should be given the opportunity to live, whether it be for moments, or years. We all have a purpose.

Will each of us touch millions of lives, or go on to make some huge global impact, so our names go down in the books for generations? No, absolutely not, but we can touch a few lives, make a few ripples, change someone’s life in some way.

I have known and cared for many people with Downs, and while I am not blind to their physical or mental limitations, I am also not blind to the gifts they have to offer. One has gotten on every last one of my nerves, and pushed every single button I didn’t know I had, then turned around and said he wished he were “normal” like me. Do you know how humbling that is?! I am so far off that “normal” path that the jungle that is my mind obliterates it, but like a child, trying to get their parent’s attention, he pushed until he had it, then completely skewered me with insight. Yes, my life may be difficult, and my mind may take some twisted paths, but I look like everyone else, and can talk to people, and not be spoken to like an idiot (oh, that pisses me off!) I can act like a complete goof, and it’s funny, where he would be deemed “retarded” and frowned at for listening to his music, singing off-key, and dancing in public.

Why? If he feels like singing his joy, and dancing it out, why must he be looked at like a fool? Who are we to say who deserves to live and who doesn’t, simply because they are “different” from the norm?

Why must we continue to shove people in boxes, so they can be accepted by the general public? Why does the general public matter so much? Who are they to me? Do they pay my bills, cook my meals, or share my life? How many of history’s greatest minds would never have been born, had the option to know and abort their babies been given, just because they weren’t going to be the child they expected?

Do I wish that my son were “normal”? Part of me, yes. I love his quirkiness, and his sensitivity, and focus, but it’s not the Autism I would change. I would obliterate the Duchenne, for him and every other person living with it. I would bring about an Egyptian plague kind of obliteration, if I could, to get rid of it, and ever other debilitating disease on this planet. I would give and do anything if my baby boy could run and play with his friends, if he never had to wear the splints to sleep again. I would go to the ends of the earth, chasing some fantasy fountain of perfection to know that he would never face the issues that this disease is storing up for him, but I would never, and I mean NEVER have chosen to abort him. My life, my son, may not be what I expected, and I may be stretched to the limits, and may have left regular stress so far in the dust that there’s not even a word for the level I face every day, but I cannot imagine my life without him. It would be…. less. Simply less.

While I understand what she is saying, the stress involved, the choice she would choose to make today is far different from choosing it when she was pregnant. Saying, now, 47 years later, that she would abort him in a second, is like saying she wishes it were legal to kill him now, because he makes her life too difficult. That is not something a mother would say. Those are the words of a very selfish woman. I am truly sorry that her son, who appears to have spent the majority of his life in one institution or another, has caused her so much distress, but to paint herself as a martyr, when there are so many mothers struggling to balance the needs of their entire family, including their special ones, is like spitting on those who don’t have the option, or choose not to place their child in an institution. Had she been on the front lines, with her son in her home, every day of his 47 years, I could see her attitude, but she has fobbed him off on institutions since he was a toddler, and became too much for her to bear. She has had moments, weekends, of the behaviors that are typical of those with Downs, and does not seem to understand that many of these behaviors are because he is overwhelmed, and doesn’t feel like he has any control. She gets him, decides “We’re off to do these merry things.” and is shocked when he wants his routine, and acts out in the only way he knows how! Had she been there, she would know these things, and would have the necessary skills to cope when he does this. Instead, she gets embarrassed, and wishes, publicly, he had never been born.

Just because he can’t read or talk, and is deemed mentally deficient by doctors who can’t possibly know for sure, if he can’t communicate in their language, does not mean he doesn’t hear, or intuit what she feels. He has probably known all of his life how much she dislikes him, and what kind of life is that for anyone?

I am sorry if my opinion offends anyone, but I grew up seeing mothers sacrifice the lives they wanted to care for their children, and I have seen them stressed and frustrated, but I have never seen one say they wished that child had never been born. I cannot fathom the selfishness, or the hardness of her heart, that she could say that about the child she carried inside herself, that she cared for, however short that time was, and that loves her with an innocence and intensity that is unrivaled by all but the youngest of children.


I know my opinion won’t change anything, and there will still be a lot of women who will choose to terminate their pregnancies, simply because they are afraid of the future with a special child, but I hope more women in that predicament will look to other parents who are in the fight, raising these children, and get their side of it. There are tons of support groups, and pages on Facebook. A simple Google search can open many doors to hear both sides of the story. It won’t always be sunshine and lollipops, but neither is parenting a neuro-typical child. They both come with challenges, and if we knew that our “normal” children were going to be drug addicts, or murderers, or whatever other negative things you can think of, would we start selectively terminating those pregnancies, as well?

Do we want a diverse planet, full of different minds, thoughts, views, opinions, or do we want a world full of “normal” and perfect, a pandemic of monotonous drones, all happy to dress/act/look/think alike?

Where would that line of acceptable choice be?

I posted this on the book of faces earlier today, and was encouraged to blog, so I figured I would put it out here, kind of as an encouragement to any other parents in that dark place of being told you’re wrong, that everything’s all sunshine and roses when you’re in the bushes.

Image

This is from when I took little man for an evaluation right after we moved to SC. He had been receiving speech twice a week for over a year, and PT almost every week (with progressions/relapses) for most of his life. When we moved, it took almost a year to find where to go to try to get him back into therapy. They were with us for maybe 45 minutes, and most of what they saw was below average, yet they stopped the interview to tell me that he was a ‘normal’ little boy, and his delays were things I needed to work with him on (because I obviously hadn’t cared enough to try). I was so hurt by the way we were treated, as though I was making up his problems, and I needed to do more for him.
Fast forward just over 3 years, and we have diagnoses of Autism and Muscular Dystrophy. This sheet of paper still makes me soo angry, I wanna hit someone and cry all at once! They didn’t even try to care about my baby, they told me my only recourse was to get him into pre-K, which, they told me was only for the poor or problem kids (they did allude that we had a chance, though). We were treated like less than human, like we didn’t matter. That is never okay.
I post this, one, because no one believed me when I told them this happened. it obviously did, and two, for the parents out there still struggling, with the questions. If you feel that there is something not right, keep pushing. I had to go through a few doctors, with a few teachers making complaints that I took to one, who finally, listened. From there, our lives have been challenged, and, yes, I wish he had an easier life, and was a ‘normal’ little boy, but he is my boy, and he is my heart, and I will fight for him every day that I draw breath.
Don’t let one person (or even a bunch of people) make you doubt yourself! You know your child better than anyone, and you HAVE to be their advocate! I dislike making controversy as much (if not more than) anyone else, but I am his squeaky wheel. If I feel that he is being shelved, I keep making noise until someone listens and tried to fix the problem. That’s what we are supposed to do.
We were given these wonderful little people to care for, and to help prepare for the world. Sometime, the world isn’t prepared for them, so we have to pave the way. Make ripples. Make people step aside and say “Wow, there goes a true Momma bear!” Hold your head high, and shout it from the rooftops, that our kids are here, and they deserve respect and dignity, and a fighting chance!

 

Random Reflections

As I sit here, at work, and think about the last few weeks, I realize that I really really need to post more! So much happens on any given day, and, if I don’t write about it that day, it is so easy for so much to get lost in the shuffle.

For instance, I learned not to follow directions on light fixtures. Several hours, and 4 rehangs later, it didn’t work, so, using what I learned about not following the directions, I hung another fixture that had been a sort of hanging lamp before, in ten minutes, and it works fine. My arms were mad about holding the first (heavy) fixture up for so long, and my feet felt as though a permanent impression of the ladder step was embedded there for a few days. That was fun. (*note sarcastic tone 😉 )

Watching my daughter blossom in our new neighborhood, making several friends already, while my son goes from disinterested to broken-hearted over the semi-loss of his best friend, has left me conflicted. Of course, I never want my daughter to be held back for her brothers sake, but I don’t want him to hurt as she grows into her own person, either.

As much as it warms my heart when he tells me that “When I grow up, and you and Daddy move, I’m going with you. Daddy said he’ll kick me out, but I’ll move in in your neighborhood so I can always be close” it also breaks my heart. I love my children, and, right now, cannot imagine life without them in their rooms in my house, but I want them to grow up, get married, and have their own families for me to love. His Autism has always been so mild, and I am so used to it, that I rarely even think about it anymore, but I know it’s there, and I know he struggles with some things more that others, and being sociable is a big one for him. When I allow myself to dwell in the worry, I wonder if virtual schooling is really right for him, or if i should have him in a school for kids like him, or a regular school with an aide, so it forces him to flex his social muscles, and step out of his comfort zone. When I think of that, though, I think of how he was bullied in pre-k and kindergarten for being so different already, and cannot fathom putting him in that kind of situation again, knowingly.

Then, when I think about his schooling, I think about my daughter’s schooling, and worry that she may be jealous of all the time I spend with her brother while she’s in school. I have offered to try virtual with her again, but she loves being a social butterfly at school, and does pretty well (if she’d focus and remember to bring papers home for me! Of course, that’s a whole other bag of beans!). I would love to do more mommy-daughter things with her, but, with my school schedule, her brother’s therapy schedule, then my job on the weekends, I’m just not sure when.

Thankfully, through all this insane-wanna-bite-my-nails-and-pull-my-hair-out craziness, my wonderful handsome hubby is there to pick up the slack, and take over when I need to disappear for a few to finish a paper or take a bath. I hope he knows how much he means to me. I try to tell them all everyday, but have to wonder sometimes if I actually said anything, or did I just mean to, and get sidetracked again by the next thing that’s been gnawing at my time?

Ugh. Well, this has been a rambly post, and I keep  meaning to take pics as I work in the house, but, yeah, not the best brain going on over here right now, so maybe soon? I will try to pop back in soon, and maybe do a post about Duchenne, Autism, a random diy project….. whatever. If anyone has any requests for what you all would like to see here, just leave it in the comments, and I’ll see what I can come up with for ya! 😉

lol (as my daughter says “Lots of Love”!)

Viv