Wednesday, November 10, 2010
Welcome To Crazy...
 |
| Yes I have bed head and my kids have on dirty pants... but that's how we roll! |
I don't tend to write a lot about what it's like being the mom of two special needs boys... for two reasons 1) it tends to be heavy and depressing a lot of the time and I don't want people to think I'm complaining and 2) because although I am proud to wear the "Mother Warrior" badge... it doesn't define who I am as a person... I am more than my sons' disabilities.
With more and more awareness being spread about autism, I think it's only right to recognize the very overlooked needs of thousands of Mother Warriors. Women who are involuntarily assigned to a life of fighting and advocating every second of everyday for their children to be afforded the same rights and opportunities your kids have. Today, as I write, 1 in 91 children (nationally) are diagnosed with an autism spectrum disorder, and 80% of the parents of these children WILL get divorced at some point. I'm likely not the only person you know whose children bear the Scarlet "A", and I think it's safe to say there are so many mama's out there who need friends that just "get it". My heart is to help you know how to enter a friend's journey through autism, who might be silently struggling, and who undoubtably needs your love and support.
FIRST... My friend Emilie always says that no one understands a special needs mom, like other special needs moms. That said (and Puuuleeease don't feel bad if you've done this), the first days, weeks and months after a child is diagnosed is so completely overwhelming. We are inundated with information from every aspect of life about how we need to change EVERYTHING from parenting techniques to diets in order to help our kids be successful. That overload of information is accompanied by extreme grief, and guilt and mourning the loss of the child we thought we were going to have. So when someone tells you their child has been diagnosed...please, please please please don't say "Oh my friend has a kid with autism you should talk to her, I'll have her call you... " it's too much... too soon, and although your heart is in the right place, emotionally, we may not be ready to share the biggest heart ache of our lives with a complete stranger whose child is probably on the opposite end of the spectrum.
SECOND... Our pediatrician once told me that, when you've seen one child with autism... you've seen one child with autism... because it never looks the same in any two children. Some kids don't like people and retreat into themselves, some kids are "hyper-social" and don't know a stranger or appropriate social boundaries... some kids don't talk and others talk incessantly without the ability to read facial cues about when it's time to be quiet. For this reason NEVER EVER NEVER tell a friend, "Oh he can't have autism because he can..." I once went to a dentist who told me that Sawyer didn't have autism after knowing him all of 5 seconds (because Sawyer is "hyper-social")... $3000, and a trip to the hospital later (all to get his teeth cleaned) I think Dr. smarty pants may have changed his diagnosis. The point is, he's not a specialist and not to be rude... but neither are you. You may be trying to encourage your friend, but what you might not know is that we have just been through a roller coaster of emotion trying to swallow the fact that we have a long, tough road ahead of us... and a comment like that de-validates (honestly I'm not really sure if that's a word) the pain and the trauma we have just been through when the REAL SPECIALISTS have given our children a diagnosis.
THIRD... It's probably a good idea to stay away from giving out parenting advice. Most of us have had to completely relearn how to parent these special kids. And although my child may be screaming, flailing and banging his head in the middle of the isle at Target, I know that I have to wait to talk to him about his behavior until he's done because he's not all there right in the thick of it... feel free to judge and stare but I can't promise I will be polite, and honestly I am sick of apologizing and explaining... just know that we are doing our best and NO a spanking won't help.
FOURTH... please don't tell us you understand ... You may relate to certain aspects of what our kids go through... I don't think for a second parenting typical kids is easier... it's just different. You can't understand what it's like to lay awake at night wondering if your child will ever fit in or really experience true love... you can't know the pain of having a child scream in an almost out of body tantrum and know that your touch and affection will only make the matter worse. You can't know what it's like to watch all of your friends' kids talk and develop typically while our child stays behind... but here are some key phrases that will probably not unknowingly hurt or offend... "I'm sorry... that sucks... I can't imagine what you're going through... just know I love you and I'm here for you."
FIFTH... Do some research... if you're wondering what your friend is going through, read some special needs moms blogs, or visit TACA, Autism Speaks or Generation Rescue... it might give you a glimpse into the crazy chaotic world of autism. Or just watch this 2 minute clip... Seriously, it's the best explanation I've ever heard...
I am truly blessed to have such an amazing support system of friends and family who "get it" and I don't take that for granted for a second. So, in an attempt to spread awareness about autism and what it takes to be a Mother Warrior, please share this page with as many friends possible... there is no cure for autism, but the more you know, the better friend you can be if this happens to someone close to you!
***The phrase "The Scarlet "A"" was borrowed and modified from Roberta Dunn, Executive Director of FACT Oregon, just so no one gets their panties in a bunch:)***
Facebook Login Labels: autism, friendship, life, motherhood
Subscribe to:
Post Comments (Atom)
10 comments:
You hit the nail on it's proverbial head. Sometimes it makes me cry when people put into words what we experience alone every day. Thank you for making it personal and for getting it. <3<3
Perfectly said. I very love you.
Lindz,love you and here for you!! :) What a great post lady!!
I cried as I read this and as I watched that clip.... while we aren't waiting to find out if Aidan is autistic, we are waiting to find out why he is the way he is.... and now that his tests are done we have 10 long days to wait for the results.
You talking about a kid throwing a fit in Target though was my trip to Walmart last night as people stared at the 5 year old laying in the basket of a cart screaming his head off calling me names as I barrelled down the isle toward the bathroom just to get away from people.
You should write more posts like this! ;o)
Thank you for putting your heart on paper (or screen?) like this, we all need to hear this, and hopefully it felt good for you to share it too! Love you girl, as always, an inspiration.
As always, Linz, you just put it out there. Nice work. Generally, I think folks just don't know what to say, think, or do.... kinda like when someone experiences a death and we don't know the right thing to say. But, we can learn to do a little better as we become more aware of what is helpful, or not. People are often nervous and maybe a little afraid, and I think it comes from a place of "not knowing". You have brought some good information to help educate.... ALWAYS a good thing. Rock on, EMM.
Both of my boys have autism. We adopted them as infants, because they were exposed to all sorts of prenatal abuse. When they were little they threw tantrums everywhere. I got lots of nasty stares, but finally I just starting saying to all those folks, "These are my crack babies. Deal with it."
I wish I could tell you the journey gets easier. It sorta becomes more manageable, but also more bittersweet as their peers continue to grow up and mine turn more inwards.
There are bright spots--my older son earning the rank of Eagle Scout with no accommodations, for example.(Check out youtube under 'autism eagle' for my salute to my son). Keep your tailgate up and continue to keep kicking some serious ass for your kids.
Well said. I have three children with autism ages 19, 15 and 15. The 19 year old has Asperger's and bipolar. The twins (adopted from birth) have autism and fetal alcohol syndrome with MR. What are the chances of us managing to have a bio kid and adopted twins with autism? Why us, God? I guess He can trust us to do the job. I don't know. But it's been hard, hard, hard. But worth it. Oh, so worth it.
My 9 yr. old son doesn't have Autism, but he has ADHD and OCD. I can relate to so much of what you said. It's so frustrating when people just don't GET IT. I am tired all day, I have panic attacks...but I'm trying the best I know how-and that's all we can do. Keep strong.
My son was diagnosed with ADHD, and although he has not been diagnosed with Asperger's, I am sure he has it. I refuse to take him to be diagnosed just to have another label and be told to continue what I am doing.
I learned long ago I had to re learn how to parent my son (way before I even thought of autism). I had a dentist recently tell me that how my son reacted to him was not normal for a 10 year old, let alone a 4 year old (that pissed me off) because he is petrified of needles and will fight tooth and nail (even drugged out of his mind) to keep from having a needle stuck in him.
I found you on BlogFrog, but I am going to follow you here. Kudos!!!
Post a Comment