Monday, October 27, 2014

The Memory That Does Not Fade

I remember the day my precious little boy was diagnosed with autism. Portions of that day have faded but much of it runs in a loop I can play in my mind over and over. I remember the phone call I placed that morning, in a panic, asking if I could get “right in” to see the pediatrician I trusted. I remember the receptionist asking me what symptoms my child was having and I remember telling her my suspicions. I remember the difficulty I had putting those words together and speaking them out loud. I remember her telling me that I could bring him in almost immediately. I remember picking my little boy up and putting him in his car seat, handing him his cloth diaper to hold; and I remember driving the thirty minutes to our appointment time. I prayed the whole way that I was wrong; that what I had found on the Internet during the night was not what Tate would be diagnosed with.

Autism: it had been in the back of my mind for months but I had not seriously considered it. I had not said the word autism and meant it before that; but after putting Tate to bed the evening before, and lying next to him, I had been forced to face the reality that something was wrong. Something was not just “a little off” but something was REALLY terribly wrong. I remember lying next to Tate. He was whispering to someone or something that only he could see. His words were not really words anymore but gibberish. He seemed to know what he was saying but no one else did and it did not matter to him. What had happened to all the language he used to have? Why didn’t he talk to me anymore? What language was he speaking and whom was he speaking to? Where had my little boy gone? I remember getting up out of the bed. I remember that Shawn was snoring. I remember going into the study and googling “mental illness in children.”. After hearing the strange language and the whispering he seemed to be doing to invisible beings, I was sure my little boy must have a mental illness. I remember the hard-backed chair I was sitting in at the desk. I remember typing in the symptoms I had been noting and the things I had been questioning in the weeks leading up to that night. I remember when the word “autism” came upon the screen. I remember taking a test and scoring Tate, afraid to read the results. I remember the first time I ever saw “PDD-NOS” and learned that there were different kinds of autism. I remember running to the bathroom to be sick, tears running down my face. I remember waking Shawn and asking him to come and read the things I had found. I remember Shawn reading, looking at the test I had found and calmly telling me he thought I had just accurately diagnosed Tate. I remember Shawn eventually going back to bed and I remember sitting at the computer the rest of the night shivering, reading, and crying, wondering and worrying.

Our appointment with the pediatrician was set for 11:00. I remember. I had called at 9:00 and the sympathetic girl on the other end of the line had told me to be there at 11:00. I don’t know what I would have done if they had put me off for a day or two. I remember thinking that over and over, “Thank goodness they let me come right away.” I remember sitting in the waiting room. There is a waiting area for well patients and a separate waiting area for the patients who are sick. We waited on the well side and I wished we were only there for an ear infection or a cough. Normally, I hated sitting on the “sick side” amongst the germs. I would have given anything to switch sides that day. I remember the nurse who called us back and I remember sitting in the patient room. I remember which room, in the maze of rooms in that practice, we used that day. Tate sat on the carpeted floor. There were some neat trucks in the room that my other children had often played with. Tate ignored them. His cloth diaper was much more interesting to him. I had brought Tate’s three favorite things with us. I wanted the doctor to see them. He had a cloth diaper, a small set of beads on a blue wire that twisted and turned, and a hardback novel about two inches thick. I cannot remember the name of the book but I believe it had a green cloth cover. Tate could not read it of course, but he loved that book. He would sit with it on his lap and fan the pages of that book for 20 to 30 minutes at a time.

I remember the doctor coming into the room. The door of the room was one that slid on rails instead of opening on hinges. Dr. Loveland, he always called himself “Dr. Chuck” when he spoke to the kids, asked me why I had come. I said, “I think there is something wrong with my baby” and I began to cry. Dr. Loveland handed me a tissue and stood next to me and watched Tate “play.” We watched as Tate tossed his cloth diaper into the air over and over, watching it drop. Tate did not look up and acknowledge the doctor or notice that I was crying. He just tossed that diaper up in the air and watched it fall. I told the doctor that it was Tate’s favorite activity. Dr. Loveland asked, “What do you think?” and I said, “I think he has autism.” Dr. Loveland’s exact words were, “I suspect you are right.” I remember them clearly. He stood and watched Tate and waited quietly until I could talk and then he asked me what kinds of questions I had for him. I remember asking, “What do I do?” and him promising me he would make sure I got all the right phone numbers and contact information for people who could help me. I remember him telling me that I would need to take Tate to a developmental pediatrician for an official diagnosis. I remember asking him what our future would be like and what would happen when Tate was grown. I do not remember his exact words but I do remember that Dr. Loveland did not lie to me. He was very compassionate when he told me that the future would be somewhat limited for Tate. He told me that he had many teenaged and young adult patients with autism and oftentimes parents had to hire help when they were older and their children became adults.

I remember leaving that appointment with a very heavy heart. But I also remember the phone ringing soon after I got home and Dr. Loveland’s nurse making recommendations and giving me phone numbers to call for information and services. I did not feel alone or abandoned. I was not ever treated with anything except compassion and kindness. So many parents with children diagnosed with autism have horrible stories to tell about the way they were told their children have autism or how the doctor treated them. I have nothing but nice things to say about the pediatrician and the people he referred me to.

It is possible that more and more of that day all those years ago will fade from my memory as more time passes. But, I somehow doubt that I will ever forget the compassionate doctor who helped me take my first step into the world of autism. I am so glad it was Dr. Loveland standing beside me that day. Dr. Loveland passed away recently and he will be missed. He was a great man and I am thankful he was in our life. 

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! 

This is a post called: What is Autism or Why Does Tate Act That Way? This is another post about our experience with a great practice of pediatricians: Why I Still Get the Recommended Immunizations

Saturday, October 18, 2014

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. 

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! 

Wednesday, October 15, 2014

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.