Advice for the Advice Givers

I recently asked parents to tell me some of the worst advice they had ever gotten. There were some pretty ridiculous things suggested. I thought the prize for the absolute worst advice should go to the mother who wrote that she had been told to put whisky in her child’s bottle to calm him.

Have you ever been one of these well meaning counselors and offered unsolicited advice? Maybe not with advice as outlandish as putting alcohol into a baby’s bottle but have you ever offered someone advice that they did not ask you for? What motivated you? When you did it, did you have all the facts? Did you know the child? Did you know the parents? Were you really qualified to give advice at all? I’m guilty. I’ve done it. I try not to do it and have gotten much better at the realization that unsolicited advice is unwanted advice.

Here are a few more thoughts to ponder… What makes a person believe they are an authority on child rearing? Do they have seven kids or something? (A little joke there.) Did they get a manual that the rest of us missed out on? Did they take a bunch of classes on parenting? And who were their teachers? Were the teachers qualified?

I had a great example in my own parents. But, I learned what worked with my own kids, “on the job.” I know my own kids. I don’t know your kids. It is my responsibility to do what is best for my kids and it is your responsibility to do what’s best for yours. It is not my responsibility to convince you to do things my way nor is it your responsibility to convert the rest of us parents to doing things the way you prefer. Does it really matter if your kid has a pacifier 'til he is four and mine gave his up at age two? Really?  

It blows my mind when someone without children offers parental advice. I also find it hard to bite my tongue when a young parent with one child or even a couple, suddenly becomes an authority on child rearing and tells me what I should try. Believe me, I've probably already tried it! The things these parents are doing for their own kid(s) are successful so they decide they will do me a favor and pass on their secrets. Here’s the thing about that.... Believe it or not, there is not a “one size fits all” policy for much of anything. Here’s an example: One of the most common tips I have heard over the years goes something like, “Put the food on the table. If the kid is hungry enough he will eventually eat.” I say, “Yeah. That would have worked for two of my kids easily, and maybe a couple of them after a while, but for some kids it will not work. Two of mine would have lost an awful lot of weight while I tried to teach them this lesson.” Have you ever told your kid they were trying peas or else? I have. I have also had to clean up the vomit that landed all over the dinner table immediately following the pea tasting. What did that accomplish? It gave that child a long-lasting phobia about trying new things, made us both feel terrible, and it ruined a meal for the whole family. Have you ever forced a green bean into a kid’s mouth and watched it come back out his nose? What did that accomplish? You get the picture. And, by the way, those were not children with disabilities.

Tate and his duck Boris

But, if you want to hear about children with disabilities… Have you ever watched a kid go 3 days without eating because you couldn’t find anything he would eat? Yeah. Three days. Autism stinks.

Sydney will eat "anything"

So, since this is my blog, I’m going to give some advice here. It is advice for the advice givers: Stop telling people that kids will eat what you give them if you stop catering to their whims! Your kid(s) are not necessarily the rule and my kids are not necessarily the exception. All kids are different. One rule does not fit for every kid. One rule does not even apply for all kids with autism. A lot of kids with autism have a very limited diet, but not all do. I have known people with autism who eat almost anything. I have known a child with autism who would eat one thing, mustard flavored pretzels. I had a boy without autism who lived on waffles and not much else for his toddler years. He was the one who had a green bean come out his nose once. His pediatrician was fully aware that he only ate waffles, and was not worried. Guess what? He turned out fine. 

Tate, aged 2 ½ 

When I asked other parents about unsolicited advice they had gotten, many of the responses were about discipline. Some parents were advised to spank more. Some were told to stop spanking. Some were told they were too lenient while other had been told they needed to loosen up. Here again, my seven children required different amounts of correction and different kinds of discipline. One child needed a frown from me; a frown would stop him in his tracks. I am not going to debate spanking in this blog post or in the comments after from my readers. I will only say that a spanking is not equal to abuse and I respect a parent’s right to choose whether to spank or not. It is no one’s business except the parent involved. One of the comments I liked the most when I was seeking input for this blog post was from a mother of a child with autism who stuck to the child’s behavior plan. A behavior plan outlines the expected behavior and the consequences of breaking the rules. From the folks on the sidelines, the mother kept hearing, "Can't you give that kid a break?!" She says that she now has an “incredibly mature, responsible, social, caring, calm, young man” and people now understand, “a break was NOT what he needed at all. He needed the consistency we provided.” She goes on to point out, “NOW he can have a break!!” Kudos to this mother for staying the course, despite those who would have steered her in the wrong direction.

Some of the most recent balderdash I have gotten was from a random reader of my blog. She told me that the ABA therapy I had provided my son when he was young was torturous. She knew this because her little girl was in preschool with a boy who has autism and she had seen his therapy. I kid you not. Of course I immediately began to campaign against ABA therapy based on her vast research and knowledge of the subject. (Like all the sarcasm inserted here?)

What is a parent to do about all the conflicting, unwanted, unneeded comments and advice? I will tell you what I do. I have learned to smile, act interested, and then disregard the counsel given by all these generous folk. Most of us have people we can turn to for advice. If we need it we know whom we want to ask. But if you find you still feel the need to give advice, start a blog. People can read if they want and leave at any time they don’t. If you made it this far then you didn't take off, thank you for reading. Leave me a comment and tell me some of the "best" advice you've ever gotten. I want to see if anyone can beat the "whiskey in the baby bottle" thing.

You might like to read this post: Encouragers are needed. Be one. 

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Winning Addie's Race

Note: This is not a typical Quirks and Chaos post. This is a tiny glimpse into the world of feeding tubes, modified tricycles, and wheelchairs, and what lengths a mom and her friends will go to in order to secure the needs of a very special little girl with Cerebral Palsy.

Except for my initial Farmville addiction and my stint in “Farmville rehab,” social media has been mostly a positive thing in my life. I was not necessarily expecting to turn strangers into friends through social media but it happened. I found a group of ladies on Facebook, through a friend, and I feel like I have found “my people.” Together we encourage, laugh, tease, listen, discuss, share and pray for one another. One of these ladies I hold dear needed me to help her with a project this week. Sarah is one of my favorites, but then I have several favorites. 

Sarah has a four-year-old girl named Addie. Addie was born at 29 weeks and only weighed two pounds. Addie has Spastic Quadriplegic Cerebral Palsy and Epilepsy. If you don’t know much about these conditions, try Google. That’s what I did when I met Sarah on Facebook. Addie’s muscles are weak. She doesn’t walk yet but I have faith she will one day. It made my day recently, when Sarah posted a video of Addie riding a modified tricycle for the first time. The sweetest voice exclaimed, “I’m doing it! I’m really doing it!” These kinds of things are pretty huge in Addie’s world.

Addie cannot eat a full meal because all the chewing and swallowing is so hard for her. She gets tired before she gets full. Addie gets a lot of her calories through a feeding tube. Her mom hooks a tube of food to a port that delivers a liquid food straight into Addie’s stomach. 

Sarah wrote this: Last year Addie was in a two-month clinical trial of a new enteral formula, which did AMAZING things for her. However we currently cannot get a GI doctor to take her on as a patient… and her insurance will NOT pay for it. Her daddy is a preacher and this is something we just can't afford.

The formula Addie tried for two months is called Liquid Hope. It is made by a company called Functional Formularies. The Liquid Hope contains “nutritionally dense, vegan, dairy-free, gluten-free, GMO-free whole food, with complex carbohydrates and no sugar added.” This I got from the Functional Formularies’ website. One feeding of Liquid Hope costs $7.99. So, three meals each day would cost a family $23.97. The commercial formula that the insurance companies seem to prefer to pay for are filled with sugar, corn syrup and chemicals.

And that brings me to the contest I spoke of. Addie is entered in a contest along with thirty-nine other children. The winner of the contest will receive 12 months of Liquid Hope at no cost to them. Functional Formularies will donate this formula to the winner. What the company gets in return is the awareness that is being spread. If enough doctors and insurance companies hear all the “noise” being made by all these voters then maybe they will see the need to add this Liquid Hope to their patients’ health care plans.

In the photo Addie is wearing casts.
The casts were changed once a
week for a month and they
straightened her legs somewhat.

I decided before the contest even began that I was going to help Addie in every way I could. I was going to leave no stone unturned. I did not really know what to expect. The number of votes for Addie was fairly small at first. I could not imagine how Addie was going to be able to successfully compete when two of the other children had hundreds of votes within hours of the start of the contest. Then I thought of my brothers and sisters in Christ and my doubts subsided. I knew that if I got the word out, members of Christ’s church would get behind this Christian family. What a campaign there has been as the votes steadily increased and the word spread!

It has not been easy though. I’ve had a very humbling week and I’ve been taught a few things. I have learned that I cannot guilt people into voting. I can inform and educate. I can ask and even beg. I can nag and make a real nuisance of myself even. But, in the end, I cannot make anyone do anything at all. I have also learned that people often forget to return a favor. I expected people to jump on board with my campaign because of all the things I have done for them. I have voted in contests of all kinds and shared most of them in the past. I’ve voted in a contest to win boots, and one to win a grill, more than one for artwork, and several baby beauty contests. There have been several contests for photographers, authors of a children’s book, and “vote for my school” contests that I had participated in when asked. I was sorely disappointed when almost none of the people who I had helped, jumped on board for this contest that was of so much more importance. I have had complete strangers from groups I am in share the contest and help me to beg for votes, but almost none of the people I thought would help me have come on board.

I’ve learned or been reminded of a few other things this week. I know that sometimes I push too hard; and sometimes in my zeal to help someone, I forget that not everyone has the same priorities as me. I have been reminded, that sometimes, even good people do not agree on what is good and what is not. There were a handful of people who I spoke with who see the contest as cruel. I heard, “the company is pitting needy families against each other.” I could understand why they might feel this way. One child will win and 38 will lose but each parent entered the contest knowing that only one would win and they were willing to compete. The company is benefitting from the contest by raising awareness, which should in the end help all of the children to gain access to the healthier diet. The families see it as a win/win situation. Many of these families have come to know each other because of their children’s common struggles. There is no animosity.

Addie is in the lead this week. I don’t know if she will stay in the lead but I will do all that I can (within reason) to keep her there. If you have not yet voted, please go to the link and vote. The contest ends October 31, 2014. Vote for Addie

Quirks and Chaos is both a Facebook page and a blog written by Lisa Smith. Here is a link to the most read post to date: 15 Truths of Parenting Special Kids   

UPDATE: Addie won the contest by 33 votes. Just an hour before it ended, she was behind. It had been "neck and neck" throughout the last day of the contest. Thank you to all who voted. And thank you to the providers of Liquid Hope. Through donations obtained BOTH of the front runners in the contest are to receive 12 months of formula and every child in the contest will receive one case of the formula. The company continues to accept donations for the children and any amount would be appreciated. 

The Note Home From School: Necessary for Moms, Nuisance for Teachers

Tate, age eleven

Communication between home and school is important to maximize the educational experience for all children. Obviously, if a child’s communication skills are limited, the communication between parent and teacher becomes even more important. Many things can be accomplished when parents and teachers are vested and cooperative, working toward the same goals. If at any time a disagreement arises that is allowed to fester and communication is disrupted then the child’s education will suffer.

When my son, Tate, began a preschool program, the caretakers recognized the need for a note home that described his day to us. It was more than just information about his academics and physical wellbeing. It helped us to work on Tate’s conversation skills. Some children with autism are nonverbal and some are verbal but are not able to have meaningful conversations. Tate could not, and still cannot, have age appropriate conversations. Although I am VERY thankful that he can talk and that he can usually get his wants and needs met by using words, I am greedy and wish that he could converse with me and use much more complex language than he is able. He cannot usually talk about his feelings or things that are not concrete. He cannot talk meaningfully about the future or anything too abstract. He cannot process language quickly so that throws another wrench in things. He does much better than he used to because of constant practice at school and at home.  

As long as we had that note coming home from preschool I could ask Tate very specific questions about his day and guide the conversation, using the information I had been provided. I could talk to him about books he’d been read that day, the art work he had done, the games he had played, what had happened during circle, what he had done on the playground, who he had sat by at lunch, and anything unusual that had happened. I needed conversation starters and things like a broken drinking fountain, a spill, a guest in the classroom, a classmate’s birthday treat, or a spider that startled the teacher, were invaluable to me as I tried to engage Tate in social communication.

When Tate transitioned to public school I asked for the same kind of note to come home with him and we added it to his IEP. The note that came home was not what I had hoped for. It was often just a list of subjects that were studied and the concepts that were taught. I explained over and over that I really needed conversation starters and I gave examples. I was told that other children’s names could not be shared with me in a note due to privacy laws. That was just one of many excuses given and the note home became a real conflict. The more I asked for, the less I seemed to get.

It is so hard to explain to someone without a child with autism, the reasons for so many of the things I have done, and why I have been willing to fight so hard for something so seemingly small as trivial information about my child’s day. But, those things are THAT important. What it might look like to a teacher is that I am a helicopter parent, hovering and needing to know about every second of my child’s day. In reality, I was (and am) a therapist at night, not just a mom, and I NEED something to work with. My child was away from me for eight hours. The conversation starters provided me about the escaped classroom pet, or the kid who accidentally kicked their shoe off in P.E. when they kicked the ball, were so valuable to me yet so stingily shared. I could not understand it. Was it a power struggle? Was it spite? Was it a misunderstanding despite my constant explanations? Was absolutely nothing interesting happening in my son’s time at school? For eight hours? Surrounded by 18 to 24 busy peers?

Fortunately, I had friends who worked at the school who were willing to share interesting tidbits about Tate’s day through emails some days. And eventually we moved to another school where the note home was not a point of contention for any of us. These days the teachers call me on the phone, text, email, and send notes home in Tate’s backpack, all of which are helpful for me when I try to engage Tate in conversation. And, the coolest thing of all? Tate can sometimes initiate a conversation with me about what happened at school. Could it be that all those evening hours of mom therapy and all those notes home are paying off? You bet your conversation starter they are paying off! The note home, autism parents, is worth fighting for. 

For another post about Tate's language development click here: Reciprocity

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Reciprocity: Keeping the Ball Bouncing.

Reciprocity. Not a word I used in casual conversation until I entered the world of speech therapy with my son Tate who was without it. Reciprocity is defined as the practice of exchanging things with others for mutual benefit. I think of reciprocity as sort of like a game of catch. One throws “the ball” (the topic of interest) to another who catches it and throws it back. A person with social skills can keep the game of catch going for quite a while without losing interest in the game or dropping “the ball.”

Social skills, as most other things, have to be taught systematically to Tate. He does not pick things up from his environment. Then there is the fact that autism and reciprocity are like oil and water. Tate is not interested in others and hearing what they think about much of anything so asking them and attending to their answer would not come naturally to him.

Tate, age 12

It has taken years of teaching and reinforcing but we have recently seen some significant progress. Tate has started asking others how they feel or how they are doing, if they have first asked him. Granted, it does not mean he is actually INTERESTED in the answer they give but at least he appears to be. 

The first time I asked Tate what he had done “today” and he gave me an answer and then reciprocated with, “What did you do today?” I was blown away. He had done it! Did that mean he had mastered social reciprocity? Were we about to see some real back-and-forth social interaction? Were we going to start hearing real conversation from him? I was elated.

The second time I heard this new “skill” used was when I asked Tate, “What are you eating?” and he answered my question and said, “What are you eating?” I was not eating anything and it was obvious. Why had he asked me what I was eating? It left me scratching my head. The third time Tate demonstrated reciprocity was when I asked, “What movie are you watching?” and he answered and said, “What movie are you watching?” I was not watching a movie. So as time went on and we saw more and more of Tate's version of “reciprocity” I realized that although we had progress we did not have real conversation. What we had was actually a sort of glorified echolalia, or parroting. Sometimes it sounds like he is trying to be a real smart alack but he is absolutely not. He is trying to use the rule that we have taught him. When I ask him, “Have you brushed your teeth?” and he answers and repeats the question it sounds like he is being disrespectful or mocking me. He does not have a clue that it sounds that way. 

Like most other things we teach Tate, we teach the general rule and then we have to teach all the exceptions to the rules. Most children just learn these things from their environment. Most children have brains that are like sponges, absorbing major social rules and all the tiny nuances to the rules. So how do I teach Tate the exceptions to the reciprocity? Hmmmm. I haven't figured this one out.

Some situations I find myself in with Tate are comical. Recently, we were in a public place and I wanted to give Tate the opportunity to visit the men’s room. I quietly asked him, “Do you need to go to the men’s room?” He loudly responded, “No. Do you need to go to the men’s room?” That got some attention from others. Yesterday we ran into a friend in town and she asked Tate if he liked it at the Junior High. He responded, “Yeah. Do you like it at the Junior High?” She looked at me and laughed. She’s about sixty years old and Junior High is long behind her. Tate is about to have a birthday and an older sibling asked, "What do you want to do for your thirteenth birthday?" Tate responded with, "I want to go to Chuck E Cheese. What do you want to do for your thirteenth birthday?" That sibling is 24 years old. 

He’s got the general rule down though! We cannot get a question past him that he does not reciprocate! In the meantime, be careful what you ask him! 

If you liked this post, here is another similar one you might like: What brought you here?

Find me on Facebook at Quirks and Chaos. Like what you read? Want to become a follower? Click on the Google Friend Following gadget on this blog. It's over on the right side and asks you to subscribe. Or you can add the URL (the web address in your search bar) to your Reading List. You can do that by clicking the plus sign in front of the URL. Thanks!