Top 3 Things Not to Say to a Parent with a Child on the Spectrum... Not This One Anyway.

I've been reading a blog by "Autism Daddy" which I find so totally fascinating and validating. Although his son has severe autism and my daughter does not, I share so many of his thoughts, feelings, and experiences. I've also followed a blog called "Autsim with a side of fries". Hilarious. I love this girl. She tells it like it is, takes no prisoners, and offers no apologies. I can't say that I understand what any other autism parent is going through because we lead different lives with different children, different obstacles, and different triumphs.  But these blogs are good for my soul. So on those days that I think to myself, "Why the F am I blogging?" I read one of theirs and it reminds me that there are others out there who appreciate the info and insight. I have read a few things along the way about different people identifying their top 5 things not to say to a parent of a child with autism. I've found that there are some definitive things that many of us share. But there are some things that don't bug me at all that other autism parents dislike. I think people are mostly intending to be helpful but I'm not going to lie... Here are a few things that have bothered me to hear.

"Oh yeah... Every kid does that!"

Of all the things people say, this one is the worst. Yes. Lots of kids have meltdowns. Not many six year olds have a dozen in a day. Lots of kids can't handle a long car ride. Not many kids have night terrors, meltdowns, or stop pooping/talking/eating because of overstimulation at a birthday party or understimulation from watching tv all day. Not many kids have to have the exact same routine every single morning where a change in which parent is driving her to school or the fact that she didn't get to see that whole cereal commercial, would incite what else? A meltdown. Or result in an afternoon of animal noises and complete loss of the previously learned English language. Timing is everything. There is no leaving the house in the middle of a tv show. There is no morning without hot chocolate. 

Maybe there are lots of kids who have difficulty with the transition from summer holidays to school. My son doesn't, but maybe kids do. With autism, our struggles are more prolonged, more intense, and more difficult. This year when Sienna started grade one, I can't count how many people responded with this phrase about every child having difficulty with the transition from kindergarten to grade one or summer back to school. And nodding as if to say, "Yeah, I know what you're saying." What that tells me is that this person has NO idea what I'm saying. I can let it go but it's like filing a recipe away. I will hold onto it and pull out some autism education the next time I see the person. And the next time I see the person. And the next time I see the person. What gets me the most is that I know what the "typical" effects are on a child transitioning into school. I have a son who started JK this year! It is soooooo very different!

"I could get her to do that. Just send her over to my house for a day."

More than anything else, this is a dismissal of all the daily effort we make to help our daughter move forward. I have tried EVERYTHING to try to get her to ride a bike with training wheels. I've offered rewards and treats. I've tried everything in the world to make it fun and exciting. She doesn't want to do it. It requires more intense motor planning and body awareness than what she can handle; trying to make her legs move in an unnatural motion, using hands to steer wheels that don't make sense to her, all the while trying to look ahead to see where she is going and then plan to reverse the legs if she needs to stop. Not to mention the anxiety about falling off or tipping over with limited body awareness and an inability to protect herself from a fall (like when you would automatically curl the body up to protect yourself). Too much! And who cares? Does she really need to learn to ride a bike? No. 

At this point i just laugh when people try to give me toileting advice. Unfortunately, even if they work at Kerry's Place, Autism Ontario, are her EA or teacher, or have a child of their own on the spectrum, it's just not going to fly with me. Sorry. I've tried it all. It's like a freaking mission impossible unsolvable mystery. I know your heart is in the right place, but if you want to offer advice for toileting because your kids figured it out the day they turned two, or have been dry at night since they were three, don't. My child does not learn the way yours does. And whatever you do, please don't tell me you're upset that your six year old peed the bed.

"Stop worrying so much."

If I could send my beauty queen to a sleepover and feel comfortable about it, that would be a huge relief. If I could trust that if/when someone was picking on her at school, she would be able to tell me... awesome. Instead I worry that my daughter can not communicate bullying and doesn't understand sarcasm or jokes versus someone being serious. I can't even think about the implications this could have. If I didn't know of all of the progress she has made, in reducing the number of meltdowns, reducing night terrors, increasing focus and attention, and improving her ability to transition from one thing to the next, is dependent upon routine and structure (regardless of how much she may enjoy herself in the short term) I would say yes to sleepovers. But I can't, in good conscience, facilitate regression after all the hard work she has done to get to where she is. I owe that to her. And that's just one example. 

I am pretty intuitive and I know many people think I worry too much. They just don't say it to my face. So that's a great first step. Don't say it to my face! But really... Don't think I worry too much. I don't. I love my kid. And I want my kid to be safe and happy. Just like you love your kid and want your kid to be safe and happy. To be fair, I may just have a few more things to think about when it comes to safety and happiness.

What Doesn't Bug Me?

On the flip side, there are things that have repeatedly come up on other autism parents' radar that they dislike which don't bother me at all. Weird right? For example, if someone says to me, "She doesn't look like she has autism" that doesn't really bug me. I don't know why. What it really says is, "The only autism I know is the full blown severe autism that affects how the person looks physically." So maybe that should tick me off. Because that would mean that people think autism is a physical disability; a visible disability. Which it's not. But, for some reason that one doesn't really rile me up. My daughter is a beauty in the eyes of this beholder. I'm good with that. 

Some parents are bothered when they hear, "I don't know how you do it." You know what I say? Some days I don't do it. Some days I'm a complete disaster. Most days I would say I don't know how I do it either. Working full time in a job that requires a fair amount of thought, organization and energy and coming home to facilitate structure and routine after a long day of talk talk talk, listen listen listen, help help help, teach teach teach? Ugh. The first thing I want to do is lay down on the couch and let things fall where they may; let the kids do whatever, wherever, whenever... But I can't. Not once. Because if I do it once, it affects me for the next three nights. And it's even more important in the morning to follow through immediately with the routine. As soon as the princess' eyes are open. If I don't, even on the weekends, it spells disaster for the weekdays when we are trying to get ready for school. One morning of iPad equals the expectation that every morning has iPad. One morning of staying in our jammies equals the expectation that every morning we stay in our jammies. 

So, as usual, I am being straight forward and honest. Ask an autism parent how her child is doing, if she's enjoying swimming lessons. Celebrate with that parent that her child sat on a bike seat, that she had a full day of clean underwear, that she enjoyed her piano lesson on the weekend, that she finally got over her fear of merry go rounds... Celebrate that her child answered your question, that she made eye contact, that she initiated a conversation with a peer. We find ourselves celebrating the things that others take for granted. Sometimes it takes a person to look beyond what they expect of someone to see the triumphs of each person as an individual. 

A Letter to My Teacher

I borrowed the format of this letter from another blogger that I follow (Autism Daddy he goes by). I think it is a great idea to send to school with Sienna when she starts the new school year.  There will be a lot of changes for her that would not typically send a child into the tizzy that we expect in the evenings. The things that will cause anxiety for her include having: a different classroom, a new cubby in a hallway, no classroom bathroom, a new class structure (with assigned desks), a new teacher with new strategies and expectations, new classmates (as she will move from a split JK/SK to a full grade 1), a new routine, different doors to enter/exit, her brother being there at recess and on the bus, riding the bus, and likely new people at the YMCA daycare in the mornings... These are the things that come to mind but I'm sure there will be others that will take us a while to figure out from her limited communication. That's where the EA will be so helpful! 

Anyway, here is the letter I've written. I haven't done my usual one thousand edits yet so it's straight from the drawing table. I'd love feedback from anyone and everyone on things to add or take out, especially those of you who work in the elementary school system and those of you who know her. Have I missed important things? There is no way to capture it all but I hope to get the essentials covered. Thanks ahead of time! Just send me a Facebook message with your suggestions!

A LETTER TO MY TEACHER - FIFTEEN THINGS ABOUT ME

Hi, my name is Sienna and I am in your class this year. I’m sure you’ve seen me in the halls but I want you to know a little more about me. I’m nervous to be in your class because it’s new and I don’t know what to expect. I need some time to adjust and then I will feel comfortable. I will probably manage well at school in my first few weeks but at home my mom and dad expect some meltdowns. As the time goes by, you will be amazed by the skills that I possess. I sometimes look like I don’t understand. That’s just because I don’t have the same expressions and reactions as other people. I might not look at you when you talk but that doesn’t mean I didn’t hear you.  In fact, I usually hear more than most people (like furnaces and hand dryers). As I become familiar with your classroom I will begin to shine. A great way to speed up this process is letting me know what to expect. Written or picture schedules for the day reduce my anxiety. A five minute warning before a change of activity can help me greatly too. You are my teacher and I look up to you. I want to succeed this year but I can’t do it without your help and most importantly, your belief in me that I can do it!

1. What is my general disposition?

I am generally happy and like to learn new things. If I get excited or nervous you may see me clench my fists or slide my jaw to the side. Sometimes I might interrupt or can talk quite loudly because I am still learning many social cues.  

2. What am I really, really good at?

I am really good at reading although it may take me some time to read out loud to you. When I left senior kindergarten, my teacher said I was reading above grade level. I am also really good at remembering facts about animals and reptiles because I am so interested in them. I would be the first to grab a frog, spider or bug if I saw one.

3. What do I absolutely LOVE doing?

I absolutely love using the computers or an iPad. Mom and dad use these as rewards for me or else I would spend all day long on one or the other. I also love humming and singing to myself. That means I’m happy and could also mean I’m tuning people out.

4. What do I absolutely HATE doing?

If you asked my mom, she would say I hate pooping… haha! But I don’t really hate doing anything. You’ll know by my reaction if there is something I don’t wish to do. I do, however, dislike crowds, loud noises, and being unsure of what to do next. If you give me a specific job to do, I will excel. I don’t like doing something wrong (like printing a letter incorrectly) and I also don’t want the teacher to think that I’m behaving inappropriately on purpose.

5. What academics are my strong areas?

On my last report card, I was beyond expected level in some math areas (number sense and numeration, geometry and spatial sense and patterning). I was also beyond expected level in reading and writing. I came home in June with entire paragraphs printed. My mom is happy to hear this because she can’t get me to read or write at all at home! And I looooooove exploration and experimentation in science.

6. What academics do I need a lot of extra help with?

I need a little extra care in health and physical activity because we are still working on my body awareness so I can be clumsy. I have a hard time participating in group games sometimes. This is likely because there are many steps to the rules of the game and perhaps because it’s loud and I don’t know what to expect, especially with so many other children running around and making a lot of noise. Again, I also don’t want to do something wrong and I don’t like “losing”. However, I did well this past summer at camp when I tried a few things out. I just have to be ready and in the right mind frame to try.

7. Which skills would my parents really like me to work on this year?

My parents would be so happy if I improved my toileting skills. They’re not so much concerned about initiating bathroom visits as much as they are with just having success. We use a daily reward system for clean underwear and successful BMs in the toilet. Anything made with chocolate is my favourite! I’m sure my mom will send some along with me on the first day. This summer I went for six whole days in a row without an accident AND with sufficient successes in the toilet. My parents were so proud! My mom has to keep an eye on the amount that I expel because when I hold for too long or have too few small BMs, I will need to have some stool softener so I don’t end up going to the hospital again. Mrs. Casey knows me well and she sends home a daily tracking sheet for my mom with that information.

8. How do you know when I’m getting frustrated?

When I’m getting frustrated at home I sometimes screech and make odd noises. This can easily lead to crying (or what my mom calls “the siren”). Mom doesn’t think I have used the siren at school very often because the teachers and EAs have recognized when I need a break. At home frustration may look like me hitting my brother with whatever object is near, my hand or a remote, whatever works! He will be in junior kindergarten this year and mom and dad are not sure if that will be a good thing for him/me or bad for him/me. 

9. What can you do to calm me down before the storm hits?

Using a calm, quiet voice and clearing my personal space helps calm me down. Taking a quiet break somewhere is the best thing, as long as I’m not being centred out or think that I am in trouble. This is where my occupational therapy really helps as well, like having someone do joint compressions, heavy lifting, large muscle activity, spinning, a squeeze toy, or playing in a sensory bucket. It’s best to do those things before the activity that might frustrate me though.

10. Too late! The storm hit! What can you do to calm me down?

Redirecting me to a quiet place to be alone will help and you may wish to ask my previous teachers what strategies they have used. Mom and dad could tell you all the strategies they use, but I tend to react to and respond to things differently at school. 

11. What strategies work really well to get me to do something I don’t want to do?

Making something exciting helps me do something I don’t want to. Being given one step at a time helps. I also like to see a few other people do it first so I know what to expect. Motivation to do things I don’t want to is always a challenge because my motivator changes frequently depending on my day/mood. Using “first, then” language may help with the “then” being something I really enjoy doing.

12. What typically makes me laugh?


Sometimes making jokes makes me laugh but other times I just don’t understand because I process things in a literal way. Swimming always makes me laugh because I love the weightless feeling I have in the water.

13. What consequences back-fire and don’t give the desired results?

When mom or dad raise their voices or try to reason with me when I’m already frustrated, it does not give the desired results. They also use a countdown of 3…2…1… if it is something they feel I can handle at the time.





14. I don’t like consequences, but which consequences work well for me?

Warning me of a time out using specific straightforward language may cause me some stress but may also stop the undesired behaviour from occurring. Time outs are devastating to me. At home, mom and dad most often use “first, then” so there are rarely consequences that would include taking things away from me. I have a hard time understanding consequences because I don’t realize what I’ve done that’s inappropriate. Mom and dad try to focus on the behaviour they hope to see the next time.

15. I would also like you to know that …

I love music and singing and dancing. After school I will be continuing with piano lessons on Mondays and swimming lessons on Tuesdays.

I love school and look forward to going every day. One of my parents will be dropping me off at the YMCA daycare – which I enjoy. My favourite friends are Katie and Maddie and they are twins in senior kindergarten. I also have many neighbours and friends that are in grade one. I just need some help pairing up with other children from whom I can learn positive social skills.

I would like to use the wheelchair bathroom (which I call the “secret bathroom”) so that I am not distracted by the noises that occur in a larger bathroom. Last year Mrs. Casey took me once in the morning, at snack times and around 3:00 to prepare for the bus. Hopefully we could try that out again this year ☺

I need a lot of help with the social skills that other children inherently understand. One example is that my mom taught me how to chew with my mouth closed three years ago, but I’ve let it slip over the last few months. So she is once again reminding me of how to chew my food politely.

I am not easily able to communicate the activities and academics I partake in, or the challenges and triumphs that I have at school every day. My mom and dad would be so grateful to have some ideas communicated home so that they can start a conversation with me about these things when I get off the bus. Maybe you have a way of communicating with the parents of all of your students. We had a communication book with my kindergarten teacher that was very helpful and if you wanted to take a look at it, you could just let my mom know. 

This article is property of and copyright © 2003-2010 Jene Aviram of Natural Learning Concepts. 

Reference of this article may only be included in your documentation provided that reference is made to the owner - Jene Aviram and a reference to this site http://www.nlconcepts.com Jene is an accomplished author and developer of education materials for children with autism and special needs. She is a co-founder of Natural Learning Concepts, a leading manufacturer for special education materials and autism products. Visit the Natural Learning Concepts website at http://www.nlconcepts.com 

Mommy Guilt

People have probably heard the term mommy guilt. We all know what that is... Am I raising my child right? Do I spend enough quality time with him? How could I have sent her to her room? Man, I really yelled at him at dinner. There are some people who have come a long way in their understanding of autism. If I share a quick story about An Hour in the Life of the Meltdown City Queen, most get it. And having kids is exhausting period. I share that exhaustion. I also recognize the amount of time and effort I put into just one kid (and I have two!). Because of that, I feel guilty about a lot of things... And here they are.

#1: My son does not get the nurturing and attention he needs, wants or deserves. He often has to sit and wait. Even when he has what he believes is an urgent request/question/comment about something. I'm sure he wonders why he is disciplined for some things that his sister is not. He gets interrupted. He's usually second. He has to change the way he plays, his noise level, where he sits, what television shows he watches and what order he does things in. He's a very accommodating kid and I'm hoping that he will grow up not feeling resentful or letting people walk all over him, but that he will continue to advocate for his sister and model how to be sensitive to other people's needs. I am very conscious of this guilt and lately have worked on ensuring that he gets one on one time with both mommy and daddy - together and separately. Even if it's just a car ride from daycare for ten minutes with one of us -- we try to make the best of it and give him our full attention.

#2: I would like to spend more time with friends and family. My dad, for one, lives about 40 minutes away, which is not far but for a handful of reasons we never see each other. Jamie and I work full time Monday to Friday during the school year and drive the kids around to sports some evenings. Most evenings it looks almost like the typical young family... Kids get home, unpack backpacks, make dinner, eat dinner, clean up dinner, kids shower, read books and go to bed. You might add a few meltdowns, refusals to eat dinner (from either child), two scheduled fifteen minute bathroom breaks with incentives and rewards, make sure you use the right words at all times, prepare child for transitions with countdowns and incentives, follow the predictable routine, clean a couple of pairs of dirty underwear, and a break up couple of sibling-scraps. Straying from our nightly routine adds to the meltdowns, the accidents and the night terrors. Not to mention that for Sienna, after a long day at a school, a 40 minute car ride times two with an outing in a different environment, life becomes overwhelming. Hence, we can't visit anyone during the week. Not right now (I predict and hope that sometime in the future it will be much easier). Even a visit from someone to our house through the week, gramps or not, is sketchy. Then we do things out of order or we skip bath or we go to bed late. Disaster. About the friends... Life is different for us than it is for our friends and their typical families. I'll be blunt and to the point. Our friendship checklist has changed in the last few years. We have to be around people who are patient. All of our friends are sensitive but they have to know what they're getting into when our whole family comes over for dinner or shares an outing. And it takes a great deal of patience.

#3: I would like to spend more quality time with Jamie. Without the kids. Without the challenges of parenting two completely different kids two completely different ways. We spend so much time trying to do the same thing, say the same thing, respond the same way, stick to the routine, follow the expected order of things... that there are very few times that we can just have a conversation. Even five minutes. It never fails that someone needs their hot chocolate right now or ding-ding-ding it's time to take a kid to the bathroom. And by the end of the night I'm pretty much done with the spoken language. I'm ready to zombie out and watch the next episode of Game of Thrones and I'm sure Jamie feels the same way.

#4: I'd like Sienna to have play dates with children in her class. I'm seriously lacking energy here. I'm thinking her little cutesy little friends are having play dates while she's not. I could be wrong. It's an important part of her development however. The more exposure she can have to guided play with peers, the better. School play is just not enough. How do I explain all the quirks and reactions she may have, how to prepare her for transitions, things that might cause her anxiety, what to do in a meltdown situation, and how to toilet her whe she's over to have play time? I just don't have the energy and I don't know who would take all that on. Well... That's a lie. We do have one friend who knows Sienna well and we feel very comfortable having her go over for a few hours to play with her same-aged daughter because she provided child care for us for the last year before kindergarten. It's challenging to have kids over here but is probably the easiest solution. I would likely have to guide the play, plan some specific structured activities, and stay closeby to help out with the social skills so they'll want to come back again. It would be best to have her brother be elsewhere. He is a great player but to have him at home when there's another kid here can disrupt the purpose of the play date. He doesn't get in the way for the most part but the extra person/ noise/ negotiating adds to Sienna's stress sometimes. Plus, he's very social and would take over in that department.

I think that's all for now. Just plain old mommy guilt. I had it when my kids were babies and I'll have it when they're paying for their post-secondary educations! I'm pretty sure I'm not alone on this one.