10 Things This Mother Wishes You Knew

November 20, 2008 at 10:49 pm 14 comments

On the heels of the wildly successful Ten Things Every Child With Autism Wishes You Knew, by Ellen Notbohm, I thought I’d try This Mommy’s version. I can’t speak for all Mommies who have kids with autism, because we all have different challenges. But here’s my ten things I wish you knew:

1.)  I do not wish I could trade my child for anyone else’s, nor do I long for him to be “normal.” “Normal” is a bad word in our house. Normal is boring. I would trade the pain and struggles that autism causes C, but I wouldn’t trade his personality for anything. 

2.)   C does care if he has friends. It may not seem obvious, but he desperately wants to connect with other kids. When I hear someone say, “Well, it’s okay because kids with autism don’t care if they have friends, right?” I want to scream.

3.)  C is not a picky eater. He is not the same as a child who is finicky about foods. C is terrified of food. Phobic, in fact. There is a difference. Letting him go hungry will not, in fact, get him to eat. He will starve himself to death before eating that slice of pizza we all crave if that’s his only choice.

4.)  Most of the time C is alone, and it breaks his heart (and mine) that no one invites him anywhere.

5.)  I’m often the only mother at the playground actually paying attention to what kids are doing. I’m up on the equipment, facilitating interactions and protecting C from other kids as well as protecting other kids from C’s enthusiasm. It annoys the heck out of me to watch parents on the phone, chatting away, oblivious that their child might be acting horribly. It’s such a prime opportunity for learning appropriate behaviors, for children with social challenges as well as those that might need a little help learning how to be nice.

6.)  Just because C is smiling does not mean everything is okay in his world. His stresses come out in different ways that aren’t immediately obvious. There are only a few choice people he will tell about sad moments in his life, and he hides those things from everyone else as best he can. Don’t be fooled by that happy face.

7.)  Just because C can do something or behave in a particular way one day does not necessarily mean he can do it the next. Expect great things, but don’t expect things to always be the same.

8.)  Autism can be extremely isolating for kids and their families.  I want for people to be gentle with us. We need friends – kind ones who care enough to try to understand how challenging our lives can be.

9.)  When I tell people C has autism, I’m not going for sympathy, for him or for myself. I just want people to understand that there’s a reason he does some of the things that he does, and I want to educate people about autism.

10.)  I am tired. I am exhausted. And sometimes, it feels as though every decision is fraught with worry and double-edged swords. Is taking C to occupational therapy sending him the message that something is wrong with him that needs to be fixed? If I stop taking him to OT so that he’ll have more time to just be a kid, am I failing him? By telling him other kids will think it’s gross if he picks his nose and eats it, does his brain think I’m telling him that he is a freak? If I don’t sign him up for that social group because I have decided there are just some skills that can’t be taught, does that mean I’ve given up? And worst of all, am I doing anything, anything, that tells him I don’t love him just the way he is?

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Entry filed under: autism. Tags: , , , , , , .

C-isms, Part X Dear Grandmother from the park:

14 Comments Add your own

  • 1. Holly's Mom  |  November 21, 2008 at 12:20 am

    Thank you for sharing this list with us.

    You should do one too!

    Reply
  • 2. embracingspirit  |  November 21, 2008 at 6:08 am

    So beautiful…..you have inspired me to write my own 10 things I wish people knew about our autism journey. thanks for the honesty….you are an amazing human….hugs, Stacie

    YAY! Can’t wait to read!

    Reply
  • 3. tiredmama  |  November 21, 2008 at 6:43 am

    I LOVE your version! Maybe all of us parents should take the time to write our own “10 Things…” about our children on the spectrum. I hear you and totally get your whole list! 🙂

    Yes, yes! I want to read them all!!!

    Reply
  • 4. robinaltman  |  November 21, 2008 at 8:49 am

    Awesome list! I feel like hanging #5 on the playground fence. What the heck? Why aren’t people teaching their kids to be kind? What’s more important than that? You’re right – there’s a lot of missed opportunities on that playground.

    It just frustrates me that they aren’t watching their own kids – as if nothing bad could happen to them or they could do nothing bad themselves. Grr. I hate the park. It’s always been my most frustrating place.

    Reply
  • 5. Angie  |  November 21, 2008 at 9:43 am

    Wow…so enlightening. He is lucky to have you as a mom!

    🙂 Miss you, friend.

    Reply
  • 6. hopeauthority  |  November 21, 2008 at 10:29 am

    Add me to the many inspired mamas ready to make a list. You really have a way with words…they just pour out of your heart.

    Yay! I can’t wait to read everyone else’s! I should’ve made it a meme (or whatever those things are called…tagging??).

    Reply
  • 7. therocchronicles  |  November 21, 2008 at 11:03 am

    Oh my gosh. Are you inside my head? The stuff about friends and the playground are so true for the Roc. He now likes to be around kids but just doesn’t know what to do! I’m like you, the only parent at the playground paying attention, and sometimes the only parent at the playground period! It breaks my heart to watch him struggle to interact and to see other children being mean to him-and they can be mean at such a young age!

    great list!

    It is astounding how mean kids can be. I don’t think I ever realized how young it starts. I try to remind myself that some of these actions are developmental, but they still make me angry. The playground especially drives me batty! It’s a tough place to hang out with our kids yet they need it too much.

    Reply
  • 8. julie  |  November 21, 2008 at 6:42 pm

    Just want to say thanks for all the things you and C have taught me over the past year. Can you believe its been a year!
    Its been a great experience for me and you never cease to inspire me

    I can’t believe it’s been a year. How is that possible! What a lot of changes we’ve seen since you started with him, huh?

    Reply
  • 9. Momma Knows  |  November 21, 2008 at 11:29 pm

    Oh wow, you have made me begin to consider my own ten things. My son doesn’t have autism, he has brain damage due to (legal, prescribed) drug exposure prenatally. He appears to be “on the spectrum”, but he isn’t. He fits into more boxes (but none, really) than I can count, and his strengths and weaknesses are more to extremes. He has his own way about him, and so much of the time I have wished I could just print a few lines on the back of this shirt, explaining him, just a little bit. Ignorant people, while they may “mean well”, are still ignorant people. Parents especially, and isn’t that unfortunate for our awesome kids who just live outside the box a bit?

    That is so funny – I’ve thought of the shirt thing too! I just had a grandparent yell toward C at a park the other day because he was screaming, and I SO wanted to educate the lady! It is too bad when people – especially grown-ups, don’t understand our kids. They are such little lights, and I think those people are just missing out. Thanks so much for visiting. I hope you do write your own list of 10!

    Reply
  • 10. goodmum  |  November 22, 2008 at 6:57 pm

    I would like to second numbers 1,2,3,6,and 10. I would also like to thank you for writing this list and thus making me cry. So much of this rang true for me and my own Little Man.

    C is so lucky to have you. 😉

    Well, we’ve known for a long time that Little Man and C are long lost twins, so I’m thinking this was your list too. 🙂

    Reply
  • 11. Sheila  |  November 23, 2008 at 2:43 am

    #10 on your list reminds me of why we need to pray for one another. I am tired and exhausted too.

    Often times I too feel as though every decision is fraught with worry and a double-edged sword. For me, it’s usually because of ignorant people.

    I hear you, Sheila. Nice to see you again – I’ve been wondering how you are doing! And I’ll put you in my prayers this night.

    Reply
  • 12. mama mara  |  November 23, 2008 at 9:30 am

    *Sniff* Beautiful post!

    Thanks, friend… 🙂

    Reply
  • 13. mommy~dearest  |  November 26, 2008 at 11:05 am

    Right on, sister!
    You may have inspired me to do a list too.

    Reply
  • 14. wendy  |  June 11, 2010 at 11:13 am

    Hey D! Remember, Jonathon Mooney says, “normal people suck!” You are a great mother. Believe in yourself. I will be at the library and then Fountain Park this afternoon if you want to come play! (Friday)

    Reply

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