Friday, December 05, 2008

Last night...

...was one of those painful ones. One of the ones where "fake-normal" caved in and the raw, surreal insides of our family were left exposed to a less than receptive audience. Next door to us is a family of five, like ours, but with a glaring exception: none of their children are autistic, and none of them are mentally ill.

They know our situation, and they know our youngest's diagnosis, that he attends a special school. They know he can be odd and socially awkward. He can drive people a bit batty with his incessant chatting and one-man shows he acts out to himself on the sidewalk in front of our house.

They keep to themselves and their own social circle for the most part. They never come over to say hello, though they will wave that "hey" kind of wave you give a neighbor when our cars pass each other. They don't ask us about our son, they seem to have no questions about why he is how he is. I have tried awkwardly to explain him, but it is hard when you know the person listening really did not ask in the first place, like you are making excuses. That it is your problem, not theirs.

We live on a culdesac. Our house is right on the circle, as is theirs. They keep a basketball hoop on the edge of the road, and our son is excited when they come out to play. He runs over to interract, but really does not know how. They don't invite him to play, and usually abandon their game in the face of his efforts at friendship, which can be disconcerting, like him wanting to recount the plot of the Spongebob movie and asking them if they thought certain parts were funny.

Last night he was wandering about the culdesac like he often does...this time with a little stretchy kids necklace as a toy, one with tiny colored wooden beads and thin elastic, like a candy necklace has. He was swinging it about, reciting lines from Spongebob, and flinging it forward and back like a tiny, ineffective whip. A few feet away, the neighbor kids were shooting hoops, and Noah was becoming irritating, it seems. All this was happening while I was inside. I always assumed if there were ever a serious problem, my doorbell would ring. I was wrong.

It seems when the 12 year old boy reported to his dad that Noah was whipping him with something, Dad responded by marching out the door and snarling at my son, "You hit someone, Noah, and someone is going to hit you back!"

When I first heard the terrified screaming, I thought Noah had been injured. I ran down the hall as he tore into the house, and met him halfway, trying to understand what was wrong as he wailed incoherently. When it came out that the Dad had said this, I was in disbelief. Had a grown man really threatened a neurologically and mentally disabled 8 yr old? I could not conceive of what terrible thing Noah could have had done that would call for that kind of response. I was horrified, too, to realize I was going to have to go over there, and talk to this man about it. I HATE conflict. Angry people scare me. Confrontation terrifies me.

It was one of those moments when I am called upon to be an Extraordinary Mom. To have to try to educate someone (an angry someone) about my far-from-typical child. I was going to have to say outloud the words I hate to say, but that are painfully true: "mentally ill", "emotionally immature", "cognitively disabled" "neurologically impaired".

Having to be my Extraordinary Mom self, instead of my fake-ordinary mom self, kind of makes me ill, makes me shake, because I have to take her public and wear the crown of the Special Needs Family, my happy go lucky exterior exposed as a sham. I have to show everyone that things are beyond my control and all broken on the inside.

I walked the longest walk of my life across my lawn to their house, where Mom and kids sat on the front steps. I smiled as I swallowed bile and said I wanted to come over to help make sense of why people were feeling upset, what had happened. I explained that yes, Noah was swinging the tiny necklace around, but was not intending to hurt anyone. Mom said she never thought he was. I explained my main concern was that Noah thought Dad had told him someone at their house was going to hit him.

At this point Dad appeared from behind the open door, arms folded, scowling, ready for a fight. He announced with righteous ire, yeah, thats right, I did, and I don't see a problem with telling him that because it is the truth. He is always out here alone. No one watches him, and he is always waving sticks around and talking loudly at everyone. If he hits someone he's going to get hit back, thats just the way it works, and he needs to understand that.

I took a deep shaking breath and tried to collect my thoughts. I said, since he was not actually trying to hit anyone, he took your words to mean, you accidently hit someone, and I am coming to hit you.

He loves the outdoors and wants to be out here and is content to entertain himself, often outloud, with imaginary play. Sometimes he uses sticks as swords or lightsabers. He is a lot like a four year old in an eight year olds body.

Dad exhaled impatiently as I went on, I do keep an eye on him and am not ignoring or neglecting him in any way, but just trying to give myself a few moments to breathe and maybe attend to my other two sons while he is happily occupied. I said, I understand your frustration, believe me. I live with this little guy. He is exhausting, but...

With a final grab at my flagging courage, I said firmly, It is NOT appropriate for an adult to angrily threaten a mentally ill and cognitively impaired 8 year old, especially if that adult is AWARE of the child's disability. And I would hate to think you would be ok with any of your children responding to a problem with a disabled child by hitting that child.

You need to come to me when you are concerned. You need to talk to me when you have questions, or need to understand what he is thinking when he does innappropriate things. I WANT you to ask questions and bring your concerns, and your children too, if they need to. I cannot read your minds, and cannot help find solutions to problems I am not told about by a calm adult.

You cannot expect this child to absorb your anger and make sense of it, and adjust his behavior and become normal. You can't look to him to solve the problem. He can't. He is not able to. He never will be.

Dad put his hands in his pockets, and nodded, though still frowning. Was he actually getting it?

I plowed on:
Please understand, this is our reality. I wish more than anything in this world, my child could understand and fit in. That he could have a happy childhood, instinctively know how to play with other kids. That he could know what it feels like to be accepted. Here is the awful truth I live with: I cannot give my child that. No matter how hard I wish. The best I can do is build a team of supportive people around him, around us, to help teach him, and maybe help him survive this life.

He needs you on his side. We need you on our team. This child needs neighbors who will stand up for him, and try to help him, not berate and reject him.

At this point, I lost my hold on my tears and my voice broke, and I found to my horror that I was actually pleading with them.

Please. I can't do this alone. Please be part of the team that helps this kid succeed. I'm just an ordinary mom trying to do an extraordinary thing. I need all the help I can get.

Certainly, ok, of course, they awkwardly agreed, now that I was in tears. Don't worry about it, don't worry about it, its no big deal.

I went over to my son, who had crept up behind us and was standing about 20 feet away in the darkened street. I took him by the hand and said, would you like to say sorry for swinging the necklace carelessly? I know you meant no harm, but it is polite to make peace if someone is upset.

He nodded and we walked over, where he said a firm, I am sorry for swinging that necklace and making you upset.

Oh honey, its ok said Mom.
Dad said nothing.

We turned and went home.

I am telling this story because I had a sort of epiphany later that night, when I thought about how hard it had been to go stand up for my son, how afraid I was of the rejection and the intolerance. Parenting my son has made me go face to face with all the things that frighten me, that horrify me, that exhaust me.

I did not plan on having to be Extraordinary Mom.
Just mom. Ordinary. But I had no choice. I had to accept the job.

Then it occured to me...
They just wanted to be ordinary neighbors.
And I was asking if they would be willing to change their expectations of what it means to be a neighbor.

I was asking them to accept the job of Extraordinary Neighbors.

They did not ask for the job.
They have a choice.
I wonder what they will choose?

The more I thought along this vein the more I realized that, for all the people in our lives who turned such a job down, or had quit when it was too hard, my life was full of people who had already volunteered for the job, fought to keep the job. Loved the job.

Extraordinary family.
Extraordinary friends.
Extraordinary teachers.
Extraordinary neighbors.
Extraordinary advocates.

Even Extraordinary Strangers.

What sets them apart is that they willingly step out of their comfort zone to help someone who is too overwhelmed or self-conscious to even ask. They love us when we are unlovable, encourage us when we are giving up, pull us up when we have fallen face-down, hug us and dry our tears, and let us know we are really doing a good job under the circumstances.

I cannot expect everyone to accept that kind of job.
Its not for the faint of heart.

But to those who have,

thank you

thank you

thank you

from the bottom of my tired but grateful heart,

For embracing all the difficult moments you encounter by being in our lives.
For not leaving me alone out here when ordinary seems so far away.

And for reminding me that maybe ordinary is not what I want to be, anyway,
when you show me what Extraordinary really looks like.


Dave Taylor said...

A very difficult situation and it sounds like you handled it very, very well. Being a parent is most assuredly not easy, and I can only imagine how hard it is with a special needs child. Good luck to you and god bless to your entire family.

Anonymous said...

I totally wrote a super long comment, and it got lost somehow -- ack!!!!!!!

To summarize it : I commend you for thinking with your heart, and taking the high road in a situation where it would have been justifiable not to.

In my experiences, how you handled it.. is often the most effective, even if you don't see it right away. People are forced to think, to face their intolerances, some may change - some may not - but by helping them be a lil' less ignorant, you did the right thing.

I wish I was your neighbor! Aside form all the artsy devlish fun we'd have -- I would love to get to know your son. Not merely out of compassion, but because I enjoy children with special needs. They are authentic, and genuine-- and its so rewrding to spend time with them.

Big hugs to you -- you are an extraordinary mom. This is an amazing post!

Lorri said...

Wow, what a post!! I read every word of it. I can't imagine the difficulties you must encounter. We all have our share of grief and difficult times, this must be so draining though.
You did what your heart told you to do, you got off your chest those feelings of anger, disappointment etc., I commend you too!! You certainly are an Extraordinary Mum xo

Anonymous said...

Thanks for posting this. I needed to read this! My son needs me to be a extraordinary mom too.

Brenda said...

You are one incredible woman--you kept your head, poured out your heart and spread love----I would have blown my top and called the police-
You are "MOM of the YEAR" in my book--
love ya hippie-sistah,
brenda bliss

Sibylline :) said...

speechless, I am

judie said...

Hi Nicci. I don't get around blogging much any more but I wanted to stop by and say hello. Then I read your post. I knew already what a hard job you have, so I want to tell you this post is excellent and I hope many, many people read it, especially those who seem to be "afraid" of a mentally challenged child. I have two in my own family, two grandchildren, beautiful girls, and I know my daughters have gone through similar situations. Some people just don't understand what it's like to not have a perfect child. I think it frightens them, or confuses them, and they just don't know how to act, therefore sometimes act or react badly. Your post is excellent and you did the right thing. I think this family will rethink some of their own values now. At least the mom will. Betcha she will be more grateful for her own children. I'm sending this post to my dd. I know she will appreciate you as well. UGOGIRL!!!

Grace Wallis Gibson said...

Thank you for letting me know to check out your blog. Look forward to your comments and this one was definitely worth waiting for.

Anonymous said...

I hear what you say and I understand. My Asperger's son is 12 years old. I already raised 4 kids and this one came along when I was 45. He was in a private school and he was well accepted by his classmates. His teacher asked him to leave in the middle of his third grade year because she did not want him in her class any more. He said "She fired me!" He began to spiral down in to an deep depression that is only now beginning to lift. I know just wanting to be an ordinary mom. I think that is not possible. Ordinary moms have a lot of guilt. Extraordinary moms have been through hell and come out on the other side. My son won't mature as well as his peers in class, but he has come a long way with all the help he has gotten. He doesn't run around in circles next to others who are playing any more. He has friends who talk to him and join in his fixation on Pokemon. It takes a long time and it hurts alot sometimes, but watching and helping this child grow to maturity is a greater feat than any ordinary mom can ever know! Keep up the good work! You are a member of the extrordinary Mom's club.

Anonymous said...

Hi Extraordinary Mom!

A friend forwarded this blog to me when I described some of what I've experienced in raising my wonderful autistic son.

Even though he is "high-functioning PDD", he will never be typical. I kept hoping some how he'd "make up ground" or that with the maturity of his age peers that there would be more acceptance.

And now that he's 16, there has been so much growth and maturity in Him that we can handle the "difference".

God Bless: I wouldn't wish this on anyone. But there's a huge silver lining, and that is that I know rising to the occasion of Extraordinary Mom-ness has made me a better person. And I can see my son for the kind, decent, and achieving person he is.

I have been blessed, but it took a lot of trials before I could ever see it.

I don't think it's going to take you as long as it took me. During those rare non-tired moments, I bet you know it already.

Thank you for your post. And keep up the awesome work!!!

Amy said...

Oh boy do I get it.
I wish that everyone could be more understanding and sensitive about our kids, but they just aren't.
I often think about how I imagined life would be with my child who would be perfectly behaved, quiet,and always gentle. God had a different plan in mind for me. I realize that I am Adam's Mom because I am the one who can do it and love him fiercely every day, all the time, no matter what. Our children are extraordinary. I just wish the rest of the world could see it that way.

Kathryn said...

This story really touched my heart! I am so proud of you for facing the neighbors even when you were a bit apprehensive. That Dad had NO right to talk to your child that way, no mater of his state of being. I don't know if I would have handled it so calmly. You did fantastic! If they do not decide to be the Extraordinary Neighbors they should be, then it is their loss that they will not get to know such warm and kind people. Bless you and your family!

Happy Holidays!

Anonymous said...


You truly are an extraordinary MOM! You were able to show ALL of your boys dignity, respect for self and others, intelligence and control. These are rare gifts. Our actions DO speak louder than words.

You succeeded where most people would fail. You took responsibility for your son’s actions, showed genuine concern and compassion and worked with your neighbors to find solutions. It took GREAT courage to handle what could have been a combative situation. It is natural for people to become defensive on both ends. You rose above that.

I will admit I cried while reading this. Could that neighbor have been me? It made me reflect on my own actions and behaviors. How many times I was in a rush or in a bad mood and was short w/ someone, not knowing or caring about their circumstances. Do we all get so caught up in ourselves that we forget to see what’s right in front of us?

Thank you for sharing this incredible story. I will never truly know what your day to day life is like, my heart is full of Love, compassion, and admiration for you. You are truly a Beautiful person. You were chosen to raise these beautiful boys for a reason. Stay strong, don't be afraid to ask for help and most importantly BREATHE!

Your friend

Kira said...

nici - your post left me in tears. You are an amazing mom.

p.s. I think you should remove the word "minor" from your blog description. You are a great artist and the word is demeaning.

-Kira (formerly from the Circus, before I had two boys of my own)