9.25.2010

(at least) Ten things a mother who has a child with Autism hopes you'll understand

Taken from the wonderful and insightful thoughts of "ten things every child with autism wishes you knew" I'd like to take things from a different perspective. Mine.

I am not bold enough (or smart enough) to speak on behalf of every mother who has a child with autism, but given my conversations, many of us- no matter how optimistic we try to be can find ourselves falling prey to a few unfortunate moments in life. I, personally don't struggle with the challenges my children with autism bring to the table. More so- I struggle with the challenges the "outside" world places before me. It is not my intention to boast, offend, scare or criticize but rather to educate a few interested as to what goes on in our minds when we're left at the end of the day to think about our circumstances and how we fit in a typical world with atypical lives.

1. Yes, my child has autism but he is first and foremost still a child. You would go to every extreme to protect your little ones and this mama bear is no different. He deserves every chance in this world, he does not have to earn your approval or respect and while he may not always show it to you; he has a heart, a mind and is full of potential.

2. My child would love to be included. Contrary to belief, he can hear you, he does see you and he knows there is a great big world out there even if it is a little scary for him and he doesn't know what to do. He might like to play at your house for a change of environment; attempt a birthday party to see what all the excitement is about and with a little bit of coaching and practice, he might surprise you at what a great joy he is to have around.

3. You're acceptance means a lot. A breakdown in a grocery store can end two ways. One, I can handle it with you standing by offering compassion and support or two, I can get through the moment only to rush out of sight and break down from the stares and judgment. You're acceptance means a lot.

4. That said, sometimes the best thing to say is nothing at all. I know you mean well. I know you're trying to help but sometimes I am not ready to hear it and/or you don't fully understand. A smile, a hug or a plate of cookies lets me know you care... saying the wrong thing out of desperation to break the silence isn't always helpful. If you have something you must say, I appreciate your honesty but don't be offended when I share mine.

5. My life is very different from yours. I get excited over the smallest accomplishments because chances are they took days, months and sometimes years of teaching. I cannot plan for the future because I never know what that holds in store. Most days I spend my spare time researching new therapies and catching up on chores. My child requires more of me and so I have very little left to give. This does not make me better than you; just different.

6. I need help. I may not ask for it and I may be reluctant to accept it but just like everyone else... I need help. Unless I specifically ask for your advice, this is usually not the help I'm looking for. I need a break. I need someone I can trust to step in and help me carry the load while I rejuvenate or take care of other things, especially if I have other children. Compare my child to a fragile piece of art that cannot be placed down. Either I carry him the whole time or I find others to assist. Be gentle, not forceful and know that I will probably only accept when I'm comfortable and ready- it's not personal. Just be there for me and sometimes that's enough.

7. I am still a woman. I still have needs and just because my life is different doesn't mean I've forgotten what it feels like to have a life outside of my child's world. I like to talk, I like girls night out, I like date nights and I have hobbies and interests even though I don't get to experience them like I used to. I might have a hard time relating to your conversations, I might not. I might have to make certain plans or adjust things a bit but just being welcomed lets me know that I still matter.

8. It takes the strength of a herd. No one person is solely responsible for the upbringing of a child; any child. Whether we like it or not, parents, grandparents, siblings, cousins, teachers, friends, neighbors and strangers alike all play a part in shaping a future. We never stop learning- even when we're moms who are supposed to know everything. Where I am weak you may be strong and vice versus. Let's build a better tomorrow for everyone by working together.

9. Teach your children. If you act like autism, or other special circumstances, is a disability or plague, so will your kids. But if you show kindness and compassion- kids will pick up on that too. You don't have to give a lesson (although I'd be happy to present if you needed) on what autism means- just acknowledge that some kids are different and that's perfectly alright. Children are smarter and more understanding than we sometimes give them credit for. Teach them to respect all people and they'll get much further in life and perhaps make the best friend they'll ever know.

10. Accept that I am doing the best I know how. I'm learning every day and new situations are always arising. It may seem at times to you that I am irresponsible, negligent, too lenient, too strict or just flat out beat- and maybe sometimes I am- but know that deep down I am trying. I love my child more than anything and that doesn't change because someone said they're not like everyone else. We all make mistakes and we all have our triumphs- mine just tend to be done in public. Love me, love my child and love the fact that we're both blessed to be a part of the learning journey of such a special spirit!

2 comments:

Wahl Family said...

We have a boy that has autism in our ward and his mother gave a great explanation of his life and experiences. that helped so much and now our kids realize his life and that he a kid just like them and they treat him as such. it was great because they understand that it isn't something to be afraid of and they talk to him like of course you would any other kid.i think they thought at first that he would be scared of them or whatever but that helped a lot.

Ramona said...

Well, it took me a few tries to make it through because my eyes kept filling with tears (and I'm waiting for a piano student-not good!), but I felt, from the heart, every word you typed. I wish I could print it on a banner on my front door, or a flag attached to my car (okay, so people wouldn't be able to read it) but I think you know what I mean! I read your blog faithfully and I love it! Thank you and keep writing! It's nice, so nice, to know I'm not alone!