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The Lonely Ones: Another Walk Down the Road

Updated on March 24, 2018
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Ramona is a full time mom who likes to write and discuss life.

The Lonely Ones: Another Walk Down the Road

In the late 70’s TV series “The Incredible Hulk,” we all watched Dr. David Banner walk a lonely walk down the road, each time things went wrong and he had to leave town again. The general sequence of events was always the same. He was a man with a good heart, who had an odd condition. He didn’t mean to turn big and green, and scare people or destroy something when he was angry or stressed - he just did. Once the damage was done, there weren’t any second chances, understanding sympathy, offers to help, or forgiveness. It was scared looks, outcry, finger pointing, and head-hunting.

Thankfully for Dr. Banner, he transformed back into a normal-looking man and could just leave town unnoticed after his rages. Everyone was busy looking for the big green ugly monster as he walked away with “The Lonely Man” playing in the background.

My daughter is always the same beautiful girl, with deep blue eyes, fair skin and thick curls like Goldilocks. She never turns into a big green monster. But sadly, our lives in some ways are like Dr. Banner’s. She has Fetal Alcohol Spectrum Disorder, or FASD. She looks "normal," but her brain has permanent damage from her birth mother's decision to drink alcohol while pregnant.

We’re walking down that lonely road again now, in between “towns” of trying to find a peer group where she is not only accepted but valued. The latest episode at the latest group was really minor in the grand scheme of things. But it was still enough for us to have to move on.

We were part of this group for a few months. My daughter relished being the oldest, and tried to embrace being a helper as best she could. I thought this would be a good fit for her, being a small group that emphasized a family-like atmosphere where the kids all mixed together with the oldest helping the younger ones.

For a while, things seemed to be going well. My daughter worked hard at trying to remember her manners, help her teacher, cooperate with the adults and get along with the other kids. She made friends with two of the kids in her age group, which pleased me to no end. She looked forward to going each time, and I was thankful to have a safe place to take her.
Until things went wrong again.

Those of you with special needs kids know how the smallest changes can sometimes set them off. Both of her older friends left the group. We moved from meeting in a building to meeting in someone’s home. This provided an opportunity for the kids to be in another room without adult supervision for a few moments. And that was all it took.

My daughter found herself in a room with rowdy younger kids for a few minutes. I was busy helping one of the parents clean up, so I wasn’t in there with her. My daughter came out and complained to me that some of the younger kids were getting out of control. I went in and reminded them to not be too rowdy. I didn’t see anything amiss; just kids being kids. Then I continued to help with cleanup.

When we left the meeting, my daughter was very angry. She had a tirade in the car about the noise the younger kids were making. She complained loudly about their behavior and wondered why their parents didn’t discipline them more. I sighed to myself, recognizing her immature but earnest attempts to internalize and apply how her dad and I were trying to teach her good manners. Trouble is, she tends to project these values more than internalize them herself.

After about half an hour of venting and letting me talk her through it, she calmed down and seemed to forget about it. Soon after, we went for a girls’ coffee date, which pleased her to no end. We talked about other things. I was happy to enjoy her company, the good hearted big-and-little girl of mine with her own unique way of seeing the world. I also shrugged the event off as her having a bad day with too much noise in a small area.

Until I got the email.

Those of you with special needs parents know. How receiving any texts, emails or other messages from adults that spend any time at all around your kids, can set that knot of dread growing in your stomach immediately. Often before you’ve even read the message.

The email stated this parent’s side of the incident. You know the drill - your kid did such-and-such. We have witnesses. (No one was hurt, but let’s all have a cow anyway, because your kid is different, we don’t understand her, and we don’t trust her or you. Whether or not they come right out and say this, the implication is there).

It took about 30 seconds for all sides of this scenario to run through my head. Picturing what actually must have happened. The parents all jumping on their phones and comparing notes. The discussions with their own kids. The wide-eyed kids telling their side of the story. Everyone looking at us with a mixture of fear, anger, wariness, pity, perhaps a tiny bit of sympathy?

Tiredly familiar with this drill, I moved into action with well-experienced responses. I profusely apologized for my child’s behavior. I didn’t point out their kids’ part of it; it didn’t matter. All of the other parents are best friends, as are their kids. We were the new “outsiders” in the group, and the one with a child who has a known “issue.” I didn’t fish for needed compassion and support that wasn’t offered; I’ve learned the hard way not to. Asking people for what they can’t or won’t give, usually just makes them defensive. Sometimes, it’s asking for extra accusation and personal attack on you.

The contacting parent also repeated the group rules - to be fair, verbatim to the group rules in writing that we had signed when we joined the group. My child was now “on probation,” and one more such misdeed would result in having to take leave from the group. I knew from experience not to put my girl into this dynamic. She knows she’s different; she knows she has trouble with always remembering to behave in the way that others expect her to. She knows she’s going to make mistakes. Putting a special needs child in a situation where she’s being held to a standard without offering the needed support is unethical really, besides being unkind.

I pulled her from the group, rather than put her in the “fish in a blender” position. Thankfully the other parents were content to allow us to bow out gracefully. A couple of them did offer a few sympathetic words in parting. In the particular situation, the words rang a bit hollow, but I was thankful not to have tar and feathers this time. (We’ve had that side of leaving a group in the past).

I chose not to tell my daughter the details of why we left the group. We’ve made some progress with her; another setback to her self-esteem and trust in other people would be most unhelpful at this time. I’ve learned it’s best to leave with my child when I see a reason and an opportunity, before things turn ugly. Before the tar and feathers do come out, and my child is labeled and so is my parenting.

In the wake of the most recent school gun massacre in Florida, the internet has been abuzz with “why it happened” speculation (and accusation, and finger-pointing). The young gunman has FASD, as does my daughter. I cringe at the ignorance and fear that will continue to spread, as the result of this tragedy. But I hope that more real education and perhaps even more compassion will spread as well.

Blogger Donald Craig Peterson recently published an article titled “Could Someone’s Child Be the Next Mass Shooter?” Please look it up if you haven’t already. The whole article is important, but the words that pierced my heart were those describing how many troubled special needs kids come to feel, after years of being underserved, rejected or even shunned:

“No one wants me around. No one cares. My life doesn’t matter. Why should anyone else’s?”

In this young man’s case, the “why should anyone else’s” resulted in a mass shooting. But the truth is, most troubled people with a mental health condition don’t do this. Far more of them turn on themselves. Cutting. Having unprotected sex. Overeating. Hiding endlessly in front of their favorite video games. And sometimes, choosing to take their own lives. Many of them never think of that fourth sentence in the sad reflection above. They stop after three. And stay stuck there, sometimes for the rest of their lives.

Back to my family’s situation, what I would wish for is for others to take the extra step. To offer a little bit more than the standard, because our kids are not “standard.” Yes, the rules are in place for a reason, but our kids need a little extra help following them.

If you’re one of those comfortable people, with a cushy life including happy kids, supportive friends, and a thriving social life, your cup is full to running over. Can’t you spare a little bit of your extras to share with a thirsty child? I’ll give you some examples how to do that in a minute.

Meanwhile, here’s what I was basically given by Mrs. Parent, representing the other Mrs. Parents in this particular group: “Your child has violated the group rules. If she does it again, you all will be asked to leave.” (I was also informed that the whole situation had been extensively discussed between all parents and other attending children before I ever heard a word). Here’s what I got from most of the other parents: Silence.

Here are some examples of how to share your water with a thirsty child:

-Include the “offending” child and their parent in the concerned conversations from the outset. They’re people, with the same human rights, feelings and needs as you have (often painful, aching feelings and needs) - not monsters. Don’t “try and convict” them behind their backs.

-Affirm to that parent and child that you value them. (Do you? If not, that’s a poor reflection on you, and I’ll leave it there for now).

-Say something along these lines to the parent: “I know you have some challenges that I don’t really understand. How can I come alongside your family to help you through this challenge?” And then follow through and do it. The truth is, the burden to ask for help is usually put on the person in need. And more truth: they’ve become both weary of, and wary of, asking for help. (We parents of special needs kids have unfortunately learned all too often, that if other parents really wanted to help, they’d offer. Which they most often don’t).

-Empathy doesn’t have to be from a place of having personal experience with, and understanding of, another person’s particular struggle in life. It just means you take a moment to connect with basic humanity - both yours and theirs. You take a few moments and a little effort to care. And that can make all the difference. Be their friend, in some capacity.

-I’ll end here by urging you to look up Brene' Brown's video on youtube on what it means to empathize. Don’t be the one peering down into the dark hole, like Mrs. Parent and her friends. Be the one who’s brave enough, and compassionate enough, to come down and bring some light with you.


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