Walk Away

I have a fourteen-year-old son with autism and I am very active in the online autism community. The question has been asked of me more than once lately: If you meet a small child who is showing signs of autism, should you tell the parents of the child that you suspect he might have autism? There are a couple of things to consider for sure. How well do you know these people? And how sure are you that your input will be welcome? Unless the parents are folks you know very well and they have asked for your input, you might want to consider biting your tongue and walking away. And honestly, even if you know the parents extremely well you should consider just walking away with lips tightly sealed. Does my answer surprise you?

It is not the answer I would have given ten years ago when I first entered the autism community. Back then I wanted to share my newfound knowledge with as many people as possible. It is the answer I give now though because of the experiences I have had. I have lived and learned. Yes, I am aware that early intervention is the key. Yes, I am aware that many people do not even know what the signs of autism are. Yes, I am aware that a young parent of a first child might have nothing to compare their child’s development to and need some guidance. But I am also aware of a few other things. The shock and disbelief you will probably encounter from a parent when you suggest something may be “wrong” with their child will build a wall between you and them that cannot be knocked down easily. That wall could keep them from coming to you later for advice when they are ready to seek help. Offering unsolicited advice or even a suggestion about seeking a diagnosis might do irreparable damage to the relationship you once had.

If you find yourself wanting to offer unsolicited advice to parents you do not know very well think about this: You probably do not have enough information to make any credible suggestions. Perhaps they already have a diagnosis or a similar diagnosis. Perhaps they do not want one. Perhaps it is none of your business. I did not think about these things when my son was newly diagnosed and I found myself wanting to enlighten those around me. I found very quickly that most people want to keep their feet firmly planted in denial as long as possible. There is something to be said about the bliss of ignorance. I myself often long for the days before I knew what autism is. I was one of those parents who would not have appreciated someone else trying to tell me about autism before I was sure I needed to seek a diagnosis. For a while I forgot that about myself, or maybe I just did not consider how others might feel similarly.

Put yourself in the shoes of the other parent (or maybe you have actually been there already). Have you ever had anyone walk up to you and suggest they know something about your child that you yourself do not know? A parent can go from friendly to defensive, or even furious, in a heartbeat. Would you walk up to a parent at their kid’s ballgame and suggest their kid needs to spend some additional time practicing at the batting cages? It probably would not be met with a friendly attitude. Would you offer parenting advice to parents in the grocery store because their child is misbehaving? I would not recommend it. Would you ask the parent of a child who is limping or stuttering what kind of therapies and doctors they had been to about their child’s “disability?” I can imagine the parent would not appreciate it.

I would make a few exceptions to my rule for not interfering. If the child in question were a relative I would mostly likely offer the parents some literature to read and try to have a conversation with them about early intervention or the signs of autism. If they were not receptive then I would not push. Probably nothing good would come of it. Of course most of my relatives are very educated about autism already because they are a part of Tate's life. 

It is hard. It is hard to see the signs of autism in a child, know what needs to be done to help, that early intervention is the key and time is ticking, and know you have so much knowledge you could impart, and still walk away. It is harder for some of us than others. When you are introduced to autism, you begin to see it all around you: the awkward gait, the lack of eye contact, scripting, inappropriate play, repetitive behaviors and social delays. I have to remind myself often, although I know what autism looks like, I am just a mom of a child with autism. I am not a doctor. I am not qualified to diagnose autism. I also have not been invited to give my two cents. And I walk away.

Tate and Sydney, age 3 and 1

If you do find yourself a part of a child’s life after the diagnosis of autism, a child you suspected had autism before the parents sought a diagnosis, NEVER NEVER NEVER say to the parent, “I suspected that your child had autism.” This actually happened to me and has happened to others I have spoken with. There is the initial hurt of knowing others “knew” but did not tell you. For me, even after I came to realize I would not have been receptive had that friend come to me earlier than I was ready to hear the word “autism,” the hurt was still there. It was sort of “’I told you so’ only I didn’t tell you” and it was so humiliating and painful for me. If you find yourself a part of a child’s life after the diagnosis of autism, a child you suspected had autism before the parents sought a diagnosis, and you are tempted to say, “I knew something was wrong earlier than you did.” then think again. If you bit your tongue in the first place and never said anything then BITE YOUR TONGUE this time too.    

Note: I’m sure I will be hearing from people who tell me they disagree and they were very grateful for advice they received. How without the unsolicited advice of a neighbor, friend, relative, or stranger, they would never have gotten their child the help they needed. I realize I am not the authority on this subject and I realize there are people who do not become offended when someone offers them information about autism. However, I still believe that MOST people would rather not receive unsought contributions from others about their children’s well being. This is just my humble opinion. As hard as it is I try to bite my tongue and walk away.

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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is your criticism really that constructive?

For starters I should probably say:  I am thrilled with my kids’ teachers and their paras this year!  Both my kids are having fantastic years.  My frustrations have nothing to do with classroom teachers, Resource Room teachers, or paras.  Tate and Sydney have the best!!

When the parents of a special needs child get “constructive criticism” from a community member or a school administrator, they have a decision to make.  Do I try to explain things and risk having an explanation sound like I am making lame excuses?  Should I nod my head and smile, ignoring the advice given?  Should I write a scathing letter and tear it up before I actually send it?  Should I write a letter that I have to tone down over and over so I can actually send it?  Should I close myself in a bathroom for a while and shed a few tears, feeling sorry for myself and wondering if the world around me will ever understand?  Should I seek out the mother of another special needs child who “gets it” so I can have a sympathetic ear for a few minutes?  Should I write a blog post and use that as “therapy” for myself?  Should I sigh a heavy sigh and just keep on plugging along?  I’ve done all of these things at one time or another in the past few years.  Today, I considered a letter, but knew it was either going to be the blog post or the tears.  Here’s the blog post:

Sometimes I just want to scream, “How dare you!”  “How dare you judge me, or my precious little girl!  How dare you offer me advice or tell me how I could do things better.  How dare you assume I COULD be doing things any better than I am.  How dare you assume SHE could be doing any better!  Try walking a mile in my shoes and then we can talk.  Try walking a mile in HER shoes and try to manage as well as she does!” 

I started my blog so I could share what it is like for Tate and Sydney to get through their day.  I sometimes aim at the people who work with my kids so they can better understand where my kids are coming from, thus helping those who teach them to be better able to educate them. True, not everyone who works with my kids reads my blog.  True, I have not invited everyone who works with my kids to read my blog.  Although it is public, not everyone in our lives is aware of the blog, nor do I think so highly of myself that I think everyone would WANT to read my blog.  I hope it is being shared in my community and by my friends, to raise awareness about autism, ADHD and the challenges these kids face.  If it helps anyone at all to understand then I am happy.  

When a parent of a child with special needs is struggling to get things done they need to be encouraged, not reprimanded.  If you tell me Tate isn’t eating healthy enough, don’t you imagine I already know that?  Don’t you imagine I have already spent many, many hours worrying about that and working on ways to fix that?  Don’t you imagine I would do almost anything to fix that? 

If you tell me Sydney is late to school, don’t you imagine there is a good reason?  Don’t you know that I KNOW what time the bell rings and I KNOW she is having to use up two or three MORE minutes jumping through hoops and getting a pass to class?  Don’t you imagine that EVERY morning we are RACING to beat the bell so I won’t have to say, “Honey, you are late so go into the office for a pass.” 

Sydney is often late to school.  I’d like to say “through no fault of her own” but I’m not sure that would be accurate.  I also cannot say “through no faulty of MY own” either.  She is late, partly because I dread waking her and going through the morning chaos, and partly because of all the unpredictability of the morning chaos.  Her pills take thirty minutes to an hour to really benefit us much.  (I’ve documented two typical mornings in blog posts on December 22 and April 28, 2012 if you are interested and haven’t seen them before.)  I do the best I can.  Sydney does the best she can and her brothers and sisters do the best they can.  She really cannot help her hyperactivity or the energy or the lack of impulse control. 

Wake her earlier you say?  The earlier I give her meds to her, the earlier they wear off.  By 8:30 PM when I am trying to get her in to bed, she is bouncing off the wall again, talking non-stop, getting out of bed over and over and unable to settle down easily.  If I wake her earlier and start her day earlier then we pay earlier in the evening.  Thus, putting her to bed earlier and waking her earlier is not really a good option for us.  The school staff and her classmates already get the best of Sydney.  Although, her classmates complain often about her they do not understand how much worse it could be.  I often wonder if I sent her to school once with out her meds if they would come to appreciate her more.  Not long after she gets home from school her medications begin to wear off and I deal with the “evening Sydney.”   

Switch medications you say?  We’ve tried several medications and the two she takes are the two that have worked the best and the longest for her.  She likes being calm and she likes being able to think.  She likes being able to have a calm, quiet conversation with me.  She is pleasant and able to learn while on the medication.  She fully understands that no one likes to be around the Sydney that is out of control.  She CANNOT HELP IT!!!  Exposure to alcohol in the womb robbed her brain of the ability to control impulses.  There is nothing she can do about it.  There is nothing I can do about it, except give her medication to help slow her down. 

Some days Sydney is more than a few minutes late to school.  On those mornings it is often because her eleven-year old brother with autism wet his bed the night before, thus adding a shower and the stripping of sheets to our morning.  Or, perhaps I let him try to pour his own milk and that resulted in him having to change his clothes and be reassured over and over that it was “no big deal.”  You see, almost any change in his morning routine is going to result in anxiety.  Do you think YOU could get a kid to school on time if he was pacing and stimming?  I won’t even ask him to get into the car unless he is calm and happy.  I’m NOT going to ruin his day, his teacher’s day and his classmates’ day because he comes to school in “melt-down” mode. 

Get HIM up earlier you say?  Kids with autism often have erratic sleep patterns and Tate does NOT sleep very many hours a night.  I allow him to sleep until the last possible minute if he is still asleep when I wake.  Usually, though he is the first one up at our house.  His teachers often think he appears sick or tired because he gets little sleep. Getting Tate and Sydney to school before the bell rings is always a goal but it is just not one I can afford to make my biggest priority.  If you had walked a mile in my shoes you would be able to see that a child with special needs does not always appreciate our schedules and there are some things that are much more important than getting to school before the first bell rings. 

I’m not looking for sympathy or pity.  I am actually very happy and pleased, even content, with my lot.  I only write to raise awareness.  If you feel like offering some advice or giving some constructive criticism to a mother of a child with special needs, think again.  Are you really close enough to her to offer that piece of advice?  Do you really know what her day looks like?  Why don’t you instead think of a way you can encourage that mom?