There is a phrase used to describe an optimistic person: Seeing the world through rose-colored glasses. When you are the parent of a special-needs child, you definitely see the world, and your child, through a different, special lens. One of perspective. To say you appreciate the little things is an understatement.
The joy you get from the tiniest progress seems laughable at best to the Average Joe. But if you share you excitement over a milestone with another special-needs parent? They are singing praises and thanking God and the universe with you because they know from personal experience how long we wait for it and how rare those accomplishments can be.
We celebrate everything! I’m not just talking speech and potty training or singing the A-B-Cs. I’m talking about eye contact, social interaction, one less seizure per day, pointing, trying a new food, approximate speech, a solid poop, the word “mamma,” a friend.
These are joys most parents can take for granted. Their little ones are growing and learning so fast, it’s hard for them to imagine how long we have to wait for progress.
I love my autism mom friends. Diamonds in the rough, they are the biggest cheerleaders for my child’s accomplishments. And they support me through the good and the bad and the lows and the highs because who knows better than they do what this journey feels like?
It’s tough finding and keeping “normal” friends with no autism connection. (Not just because autism rates are so high that autism seems to be affecting almost everyone). Sometimes it’s hard for us to see their typically developing children doing everyday things (talking, playing, learning) and not feel that small twinge of envy or that despair of “will he ever . . . ?”
Friends that do not have an autism connection who really “get” you are tough to find. Not only are your perceptions of success different, but also your availability. You don’t have the freedom to just up and go whenever an occasion arises. You may not be able to take your child on certain outings due to sensory overload. McDonald’s is not GFCF. And it’s embarrassing to explain why you are always strapped for cash.
I found one such friend who accepted me and my family for all our differences — diets, supplements, homeopathy, toxin avoiders. We hit it off and I felt very lucky and very comfortable.
One day while visiting our local Train Museum with my friend and her children, I noticed my 17-year-old son with autism was unusually calm. During the trolly ride and the art museum he continued to be engaged. I mentioned to my friend how surprised I was that he hadn’t “flapped” the whole day. Tristen’s flapping is a self-stimulatory behavior. When he is off in his head thinking about other things, like a video or TV show, he will raise his arms at the elbows and with loose wrists flap his hands and talk to himself. He does this mostly during his “down time” at home. It’s kind of like when you get home and you kick your shoes off, put on yoga pants, and lie down on the couch — Comfort. You’re in your own home, and you want to relax. That’s his way of relaxing.
My friend’s response:
“Are you embarrassed by him? Why don’t you just let him be who he is? I think the world would benefit from learning to accept people like him and all of their quirks. You are making it more difficult for the next generation of children with disabilities to be accepted when you correct his behavior.”
It is an understatement to say I was shocked, not because I haven’t heard those kinds of remarks before, but because I couldn’t believe that someone who I was so close to could possibly believe I was embarrassed by my own child.
Because flapping is an escape for Tristen, we like to give him time to be free from worry and to express himself in a way that he feels comfortable. But we also recognize this symptom as a manifestation of something bigger. Along with treatments that can ease the urge to flap his hands, we also teach him when it’s appropriate and not appropriate. We work on having him “focus” in public and. if he is having a hard time, putting his hands in his pockets as a reminder.
Why would I correct that behavior?
Here are three reasons why we correct or teach appropriate behavior to any and all children:
- Safety. The first things we teach our toddlers have to do with safety and the same goes for children with special needs. No standing on chairs. Keep fingers out of light sockets. Chew your food. When I teach my son with autism not to flap, I am trying to keep a target off his back. Drawing attention to himself as someone who is potentially weak is the perfect way for someone with ill intent to tease, trap, harm, kidnap, abuse, molest or take advantage of him. I want him to look just like any other kid in the park or at the store so, hopefully, those seeking to do evil will pass him by.
- It’s my job as a parent to teach my child and encourage my child to be his best. When our kids are young we teach them. If we just accepted the way they are without encouragement, they may never talk, walk, or listen to anyone at all. If your teenager bombs on their SATs, are you dismayed and ashamed? Or do you support and encourage them to study harder and try again? Learning geography? No! Why can’t we just accept he doesn’t know geography? (Wait, maybe that’s not a good example . . . I’ve had to accept I don’t know geography.) What about a stutter? Lazy eye? That’s just who she is! Chewing fingernails? Accept that bad habit for what it is, no need for self improvement! Why change? Accept me for who I am! I like to rob stores! Walking around naked is good for me! (Not me personally; no need to be alarmed.) Why do we teach our children anything at all?
- Love. The main reason I correct my child’s behaviors, is out of love. Pure and simple. No one loves my child more than I do. I love him enough to keep working at his goals every day. I love him enough to never give up on him. I love him enough to encourage him. When I hear his prayers at night that God will heal his brain, I take notice and pray too. I ask God to give me the knowledge and ability to be his instrument so my child can heal. Love is wanting the absolute best for your child and working tirelessly to get there no matter how long it takes.Every day I want to yell from the rooftops how blessed I am with the gift of being his mom because I am so undeserving of his pure, sweet spirit. How did I get so lucky to know love like this? I refrain from sharing how truly special he is, for fear of sounding boastful. He is love. And although I wish he never had to go through it, I am here and we will make it.
So for anyone out there who is still questioning, there is no possible way I am embarrassed by my child. I can’t imagine being more proud of him and his accomplishments as most have not come to him easily. I was not embarrassed when he was three and screamed throughout a whole birthday party because they weren’t serving the cake soon enough. Nor was I embarrassed when he was the only child running the wrong way in a field day relay race. Quite honestly, I didn’t bat an eye (but died laughing later) when he exclaimed I needed to shave my mustache when I was teaching Sunday School.
You see, encouraging greatness does not change the core of who he is. He is still my son, regardless. Just as your child’s accomplishments do not change your love for your child.
Every moment with him, my life is better . . . not always easy . . . but full of real joy. The kind you get looking through those special perspective-colored glasses.
~ Green Bean Girl
For more by Green Bean Girl, click here.
When my son was 7 I wrote this poem i response to a well meaning teacher who thought I was just not accepting of my sons autism. It’s about the struggle to simultaneously accept and love and heal and I am glad I persisted and ignored the educator, as my son is mainstreamed, happy, almost recovered, and doing well 7 years later.
http://www.ageofautism.com/2008/07/autism-twins.html
I’m replying to this post because it mentions a common issue with our autism kiddos… Flapping. I have recently had success with curbing this issue ( not taking it away but decreasing it immensely) so I feel the need to share what worked for my son.
The essential oil Vetiver has been key for him. Like many autism moms, I have tried so many different things to decrease this behavior with little success. I got into essential oils based on a TMR post but honestly didn’t see huge benefits after trying a few so I gave up for awhile. You know the drill, another heart break from hoping this will be an answer only to find that it’s just ok. Anyway, I’ve been praying a lot recently and I kept receiving a message to try it again. So, I dusted off my essential oil book and started researching all of them in depth. I tried a few again with no real success and then came Vetiver. It literally decreased his flapping in one day. His teachers noticed, his therapists noticed and of course I noticed too.
I give it to him orally in a capsule that I fill about half full twice daily. I wish I could be more specific about the dosage, but it’s a very thick oil so I cannot “drop” it like the other oils I’ve tried. not only does it help with his flapping, but it’s good for ADD symptoms as well, so he much more attentive and focused. I hope this can help somewhere out there TMR world! I know I’ve been searching for an answer for my son off and on for the past 7 years! Funny, because although I always wished his flapping would stop (afraid he would get severely bullied because of it), I had reached an “acceptance” place about it after being put through the ringer trying to find an answer for the past 7 years. Once I was at peace with wherever he was at I was able to look for answers from a calmer place instead of a stressed out frame of mind, if that makes sense.
Still, I would love to save people from the constant stress of searching if I can so I hope this can help some wonderful child out there!
That’s great, Becky! I’ve heard lots of great things about vetiver. It seems to be very effective in alleviating symptoms for at least a small subset.
And, yes, we hear from people all the time who say that once they were okay with the way things are, they were able to find ways to make things better. It’s ironic, but that’s the way it tends to work. Check out today’s post for more on that subject!
“If we just accepted the way they are without encouragement, they may never talk, walk, or listen to anyone at all.”
Then again, if you DON’T accept the way they are at this moment, they may still never talk, walk or listen to anyone, either. Acceptance is not complacence or refusing to teach.
I think people use the word acceptance to mean different things, so bear with me…
>>Why do we teach our children anything at all?
I love TMR, but this is just a silly jump in logic. I don’t believe acceptance of who they are *right now* is at all in opposition to doing everything you can to help them. Acceptance is loving them for who they are, in this very moment. That is how you are able to reach them and help them most. Success creates to motivation. Failure destroys motivation. Not accepting where someone is currently at developmentally, or what underlying issues they have means you are missing a chance to connect and reach them AT THEIR LEVEL.
If you wanted to teach your 10 year old child geography from scratch, for example, you wouldn’t start by having them learn intricate details of obscure foreign countries. You’d start by reaching them at their level – teach about the country they live in, their immediate surroundings, the continents, etc. My distinction is that you could accept that your 10 year old doesn’t know where the USA is and start there, or you could say “he’s 10, he SHOULD already know that, so I’m going to teach him what he SHOULD be learning. It SHOULD take him a day to learn this, so now I’m frustrated it’s taking weeks.” Those “should’s” are very counterproductive, imho. It puts a huge burden on the child, which can shut them down from learning. When I get frustrated it’s because I’m not accepting of where my son is, and I have this false notion that he “should” be able to do something. Acceptance doesn’t mean I don’t teach or be persistent, it means I have to be a little more patient and understanding in order to be successful. When I get frustrated, the teaching is ineffective and the learning essentially stops.
Also remember that accepting who they are and what they can do NOW, does not mean anything about who they will be and what they’ll be able to do in the FUTURE. I accept that my son can’t do certain things today, and also keep working with him in a loving way to hopefully be able to do them tomorrow. Acceptance does not mean that you give up on progress. Quite the opposite, because you can be more effective in teaching.
I don’t want to ever imply to my son “you’re not good enough until you fix XYZ.” What a burden that is for anyone – if you change, then I’ll love you (btw, I know the post does not say that). I want him to know he’s loved just as he is today, and that he’s beautiful just as he is. I teach him that it will be beneficial TO HIM to change things, to learn, and to grow, but my love and his worth are not dependent upon him changing. THAT’s acceptance (to me).
I appreciate the post and I do get your point, and I think that we’re actually saying very similar things. Please understand that acceptance can mean different things to different people.
Thanks,
That Crazy Son-Rise Dad Who Accepts His Son Today, But Also Sees Tremendous Progress And Works Really Hard To Realize That Progress
You are absolutely right, Vince. We love Son-Rise and “crazy Son-Rise dads” around here. (I first read Son-Rise in 1975 and was lucky enough to do a workshop with the Kaufmans in 1994. Tomorrow’s blog is by a huge Son-Rise devotee.) Unfortunately, many people seem to equate “acceptance of your child” with “acceptance of your child’s inability to achieve anything other than what I say he/she can achieve.” We know they are not the same thing by a long shot, and they must be decoupled. That’s what this blog was about. On the other hand, many parents, even those of NT children, either make their love conditional or seem conditional by implying that their children are not “good enough”exactly as they are. That’s a whole other very important issue. I think it’s one of the core healing challenges of our time to erase the mindset that somehow withdrawal of love will motivate people — any people — toward positive change.
Thanks for this thoughtful examination of priorities for our ASD children. Often it feels as if neurotypicals observe autism parents through a microscope, lens clouded by a filter of biases. Are they hypervigilant because their sense of maternal/paternal protection extends to your child? Or does their ego need a prop, causing them to verbally engage in ethical pissing contests?
I do not understand the smug canard that says medical healing of autism symptoms denotes lack of acceptance and love. I do not understand the “God made him that way” mentality that parents leverage so they can abrogate responsibility… while their children stagnate developmentally. Yet such a situation exists in my extended family, and options to rectify it so far are few.
“1. Safety.” Thank you SO much for pointing that out. We have to keep our kids safe from bullies and society in general. Because 99% just don’t understand, and don’t want to.
Amazing mom. Absolutely brilliant!! Stated perfectly.
Beautifully said. For me, the challenge is always wisdom. Finding that line, that place where intervention is coming from the right place for us now. Knowing when to act, and when to accept. Finding treatments that may help. Even when to reach out to experts, and when to listen to my own intuition.
One of the best things I have done during all the sleepless years and craziness in raising my special ones is to meditate. Learn to get deep, and relaxed with my inner wisdom. And to remember, when in that deep place to ask for what I need, and gracefully accept it when it comes.
Thanks for your wisdom.