Faces of Hope

I met a wonderful, amazing woman whose son is in my grandson's class. Her name is Leslie Face and I'd like to tell you why I admire her so. Leslie has not one, but two autistic children. Matthew is the oldest and Joshua the youngest. You'd think she had her hands full, but somehow, while a single mom dealing with more than most mother's do, Leslie managed to start a non-profit organization, helping children in the area who suffer from debilitating conditions. She's organizing a grand opening and I recently had the good fortune to tour the blossoming facility. I just kept looking at her and wondering how someone could accomplish such a major miracle for families here in Gallatin, TN and the surrounding areas.

The unemployment rate in Tennessee was high before the economic crisis, and dental and medical insurance are not often provided by employers. The state will assist in making a preliminary diagnosis, but as with Spencer, my grandson, they give you a the test results then send you off to learn to deal on your own. It's a nightmare. Imagine trying to determine a child's needs when he can't tell you what there are. Autism usually locks away a child's social capabilities, and most don't communicate at all. They flap their arms and often engage in repetitive noises or behaviors called stimming. I recall when I was in grammar school, the children in these so-called 'special' classes weren't treated very nicely. I'm sad to say, adults aren't always very polite either.

Facing Spencer's challenges were minor compared to what I've witnessed in other children. He's considered 'high-fuctioning, and yet is in classes with children who are not. This is a serious problem for children that fall under the 'autism umbrella.' They are all lumped together and, in Spencer's case, the children that he mimics are those with more severe disabilities. Mainstreaming requires time and patience, something that seems sorely lacking in our school district.

Since I've met Leslie, I don't feel so alone in dealing with my special grandson. I have a resource, and someone who has probably faced just about everything that comes with having autistic children. I asked her point blank if she considered she might have another child with autism when she got pregnant a second time. Just a few years ago, no one suggested that history would repeat itself in that way. Joshua was born with a hole in his heart, too, so his doctor assured Leslie it was highly unlikely he would be autistic. He is. If someone has an autistic son and has another child, the changes are extremely high you'll have another. Leslie looked at me and smiled and said, "Even if I knew Joshua would be autistic, I would still have had him." That's love. Amazing, amazing love.

Just so you can know Leslie a little better, I want to share one of her blogs with you. I'm sure she won't mind:

Nothing else in this house that POOPS as long as I am the only one here that cleans it up!" That's the rule. NO MORE POOP. Sounds simple enough, doesn't it?

Let me explain.... I love animals. From the time I was 12 until the time I was 18 I worked at an animal hospital. I grew up with fish and cats, friends and family that had dogs and birds... I love animals. Always have. When Matthew was born we owned two cats, Sam and Snickers, and two or three unnamed fish... My parents had two dogs, Abbey and Maggie. The little guy was surrounded by animals. He loved them. They loved him. So far so good.

Very early on in my journey as Matthew's mom, I knew that if I wanted Matthew to say anything it would have to be about an animal. He has this amazing ability to look at a picture of an animal and tell anyone what kind of animal it is. From the day he began to discover his voice he has been able to share curious bits of information about wildlife. As a matter of fact, "hibernaculum" was one of his very first words. (Ok, "bubbles" was first.) Animals seem to comfort Matthew. They don't seem to notice or even care that he has autism. They communicate just fine without the words that so often elude and frustrate Matthew.

Fast forward now.... If we were to take a roll call here in the Face house, it would include 3 birds (that's a long story), 2 cats, 3 fish, a dog, 2 precious little boys, and me. Well, that would have been the roll call a few weeks ago.... Shortly after we got the first bird I instituted the "NO POOP" rule... Since the adoption of Pickles and Amigo (birds 2 and 3) we were doing pretty well with the rule.....

Matthew had a really bad day at school. For those of you that don't know me or even understand what constitutes a "really bad day" let me suffice it to say that Matthew didn't even make it out of the car into the school for 2 weeks after that..... We had to make a trip to Vanderbilt to see his developmental pediatrician about his anxiety. I had promised Matthew a trip to the pet store if we could survive our appointment. Once at the pet store, the manager-- who knows us well-- came up to us to show us some little girl gerbils-- sisters, she said. Sisters that had been abandoned and that really needed a home. I shared the NO POOP rule with her and, after our brief visit, we left the pet store-- WITHOUT THE GERBILS, I might add. Matthew was hysterical.

The events that followed don't really matter. I had to turn the car around after the doctor called to see if Matthew had calmed down. "He needs a diversion," she said. We now own two little girl gerbils. Matthew named them Peanut and Sweetie. He's doing much better now though school is still a struggle for us in the morning and his anxiety is still often off the charts. A few nights after we welcomed these sweet little orphaned rodents into our home I found myself in tears-- asking God to forgive my stupidity and to rescue me from the poop that I had invited into my house. Then, in a way that only God can, He sent me a little "postcard."

I walked into Matthew's little playroom and saw him sitting next to the gerbils. He was talking to them in clear, perfect sentences. "It's ok, Peanut. It's ok, Sweetie. Don't be scared. Everything is going to be ok. It's ok." In that moment I was reminded that when Matthew is talking with and taking care of the animals-- he isn't at a disadvantage-- not at all. Quite the contrary. Matthew gives and receives compassion and understanding that I believe most of us miss because we talk too much..... Matthew was reminding me that though we have hit a bump (ok, a small hill) in the road, "everything is going to be ok."

So... Mother of the year I am not. Smarter than your average bear? Nope. Abider of rules-- even good ones? Not usually. Nope. If I were the pilot of this plane, I would tell you we have 13 souls on board. And, yes, I am the only one that cleans up the poop...... And you know what? I am thankful that God has chosen to bless my life with Matthew, Joshua and their friends Ellie, Sam, Snickers, Pretty Bird, Pickles, Amigo, Mr. Fish, Mr. Fish's Brother Mr. Fish, Peanut, and Sweetie.

So, you probably see why I'm in awe of my new friend. She's positive, upbeat, and even finds poop a blessing. How many people do you know who can do that?

If you want to find out more about Faces of Hope, please visit their website Now comes the hard part...finding people who want to donate to support this wonderful endeavor. One in 100 children are born with some form of autism, and no one has a clue why. Leslie may not be part of the research to discover the answer, but she's certainly part of the solution to help desperate parents find the resources and answers they need. Angels walk among us. Yep, they do.

Thursday's Tourist

Today, I'm quoting from a special website of interest with permission from Jene Aviram.

As a grandmother of a child challenged with global developmental delays with autistic tendencies, I'm always searching the Internet for information and assistance. So many children are being diagnosed, yet there is little help available at the time the diagnosis is made. It's almost like you've been given a life sentence for the child with no hope for parole. I'm so happy that people like Jene are making a difference for those of us who feel so lost.

The following was written by Ms. Aviram at Natural Learning Concepts:


FIVE THINGS YOU SHOULD NEVER SAY TO A PARENT WHOSE CHILD HAS AUTISM

If your child has autism then you’re a walking target for friends, relatives and even strangers to offer unsolicited advice. You realize they have good intentions but it’s still a very hurtful experience. We’ve compiled a list of common mistakes that people make. When talking to parents whose children have autism, here are five things you should never say.

1. Autism does NOT mean deaf

You’re chatting to your friend and you notice her child engaging in some strange behavior. You’re curious and you ask “What is he doing? Does he always do that?” Questions like these place a parent in a very difficult situation. They are also very damaging to the autistic child’s self esteem. The child might not look up at you but he heard what you said. A common misconception is that people with autism don’t comprehend the world around them. Nothing could be further from the truth. People with autism might not respond or react in typical ways. They might not have much speech but they do understand what’s being said. Keep in mind that many of them have acute hearing and can hear what you’re saying clear across a room.

2. Actions speak louder than words

You’re standing in line a busy store. The woman in front of you is struggling to keep her sanity intact. Her child is running off and pushing items off the sales racks to the ground. “What an insolent child” you think to yourself. “His mother should discipline him better!” Don’t jump to conclusions just yet. It’s very possible the child has autism. Even if you’re tempted, do not roll your eyes and shake your head in disdain with other customers. This mom faces judgment at every turn. You will make her day if you smile broadly at her. Then offer to keep her place in line so that she can redirect her child.

3. Discipline advice

You’re visiting a friend whose child has autism. Her child is painstakingly building a tower and he accidentally knocks it over. Devastated at his mistake, he flies into a rage and hurls the blocks through the air. Your friend quiets the situation but you don’t approve of the way she handles it. Shocked at her son’s inappropriate outburst, you offer some well meaning advice and share your discipline tactics. Children with autism often don’t respond to conventional methods of discipline. This mom deals with more than you can possibly imagine and has probably tried every discipline tactic in the book. She’s afraid you’ll be judging her actions. A warm smile and a swift change of subject will do wonders for


4. You can leave him behind
You’re planning a trip to the amusement park. You’d love to go with your friend but you’re in a dilemma. Her typical kids love the amusement park but her child with autism seems to have a difficult time. So you come up with a solution. “Come with us to the amusement park” you tell her. “Your kids will love it. Well except for Tommy, but you can find something else for him to do that day.” Inviting a family to join you, except for their child with autism is a very crushing experience to a parent. Your intentions might be good but that doesn’t make the experience less devastating. Parents that have children with autism desperately want their kids to be accepted in the community. Rise above the judgments of others and invite the whole family. If you feel that isn’t a viable option, leave your invite for another day when the whole family can be included.

5. Therapy recommendations

Your grandchild has autism. You’re distraught that your children have such a rough road ahead of them. You’re devastated that your gorgeous grandchild is autistic and you want to help. Having already raised your own children you’ve learned a thing or two. You cringe as your daughter tells you about the therapy option she’s picked and the behavior management she has for her child. You give the gift of wisdom and let her know how she should do it differently. Parenting a child with autism is totally different from raising a normal child. You have to live it to really understand. If you want to do something wonderful, be supportive to the parents. Give your love, follow through on their decisions and stand by their side. You will become a hero to parents who desperately need your acceptance and support. To all the parents whose children have special needs, we commend and praise you! Your road is rocky, filled with joy and challenges. To everyone else, we stand in gratitude. Your love and support is immeasurable for parents and their special needs kids. Thank you for standing by their side.

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We are truly blessed that Spencer's personality has not been lost in the deep depths of autism that generally steals away the social connections children make. Spencer is a loving child, who loves to be the center of attention, and he has no idea that his constant arm flapping when excited and the never-ending 'stimming' noise he makes while playing are red flags to others that there is something not quite right. I'm never embarrassed by him rather embarrassed for him because of the odd looks and disapproving comments made by those who have no idea he's unaware of his behavior. As much as I want to believe this is something he can grow out of, I have to face the fact that life will always hold challenges for him. Cruelty should never be one of them. I hope everyone will continue to learn more about this frustrating disorder and the effects it has on way too many children. I'll be continuing to post more information here as I learn more to share.