In the spirit of Autism Awareness Month, I’m sharing a little bit about what goes on with my kindergartener, who has PDD-NOS, which is on the autism spectrum. Experiences with autism vary so widely- our experience is not meant to show you what autism is like as a whole. But if you don’t have any experience with it, how will you learn what it could be like if no one shares? I encourage you to read blogs from other special needs parents to get a fuller picture, but I hope that by sharing this part of our life, it can help bring more understanding.
Autism can show itself in different ways in different children. I’m going to share some of the ways that it affects my son. Not every child on the spectrum will have these same things affect them and some will have much more going on. But maybe you will be out somewhere and see a child who has some of these characteristics and you’ll have a better understanding of it- so it’s my hope to spread some awareness that leads to compassion.
Playing in his own world.
My Little Bear prefers to play on his own. And is usually pretty unaware of others around him. He’s perfectly content to be off on his own. He does like to be near others, but is okay with not playing with them. When he does play with others, he doesn’t always get the typical social cues and understand others’ emotions, though he’s very compassionate to someone who is upset. But usually, that’s my child- off doing his own thing.
It’s kind of funny that we started calling him Little Bear from a very young age because these days what we say(or at least think) is “don’t poke the bear.” He can be so unaware of those around him that he even ignores teasing for quite a while. But if someone persistently “pokes” at him, things can turn ugly. But it takes someone really invading his space and repeatedly doing something to him or he just doesn’t notice.
Poor eye contact
With my little dude, he will look you in the face or in the eyes some, but his eyes will usually drift off- he prefers not to look someone right in the eye. He can still hear you and can still respond, but looking you right in the eye for long periods of time is most likely not going to happen.
Last summer at the pool, one of the lifeguards was talking to him about jumping into the pool and she started to get frustrated and yelled at him that he had to look at her, and then told me that he had to look at her or she wouldn’t know he was listening. Thankfully, another lifeguard who knew our family well yanked that lifeguard back in her chair and told her she would take care of it. She talked to my son and explained that he had to jump facing forward instead of spinning in the air, but didn’t make an issue of it that he was merely looking in her general direction but not right at her.
Sensory issues
This means either an increased or decreased awareness of senses like smell, sound, or even pain. For my own guy, loud noises are hard for him. He’ll remove himself if it gets too loud or put his hands over his ears to try to block it out. And if there is too much noise, it will be very hard to get his attention because he’ll try to block everything out. He also notices smells and will complain that various things “stink” when the rest of us might not notice an odor at all or only notice it faintly.
But then he has a decreased awareness of pain. If he says something hurts, you better believe it HURTS because he won’t even notice things that would have other kids in tears. He’s soothed by deep pressure.
Stuck on one thing
My Bear can get stuck on a certain activity or toy and it’s really hard to tear him away from it. It’s not as simple as just telling him to stop. Or to share. If it’s something he’s attached to(and my son’s toy or activity can change), asking him to share that item is about the equivalent of how I’d feel if someone I don’t know asked to borrow my wedding rings. It’s personal and I wouldn’t understand why someone would want something so clearly mine and so much a part of me. This doesn’t extend to items he’s not attached to and he’ll share those more easily than even his brothers would.
Being a picky eater, having difficulty with transitions, not understanding social cues, language delays, some tantrums for no apparent reason: these are some of the other issues he faces. None of it is as simple as simply telling him to “get over it” which is what I could do with some of this if it were my other kids going through this. Trust me, I’ve tried. But it’s definitely not as easy as that.
It’s hard to put it into simple words. Because on their own, each of these things doesn’t sound like all that big of a deal and could be things that any parent faces. It’s just different when it’s all of it and more combined. But I’m still trying.
Because maybe you’ll come across another little boy or girl who shows some of these characteristics and you’ll get it, you’ll understand that there isn’t an easy way to change these behaviors. And you’ll have compassion. I know that being a special needs mom has taught me to stop before I judge, to give the benefit of the doubt and to realize that so many of us are just doing the best that we can. Thanks for reading. xo
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Thank you for sharing. We have a lot of similar issues. And the sharing thing? Yeah…no. I generally ask kids to leave him alone and tell people not to joke about taking things from him (adults included) because he gets really upset about it.
It really is hard, especially because people will make comments about well, all kids need to learn to share. And that’s not it, really. He WILL share other things, just not whatever it is that he’s deemed important in that moment. I finally realized it would be like someone asking to borrow something really personal to me- like my wedding rings or expecting me to take off my bra and loan it to them on the spot. He takes it that personally.
I loved reading about your little boy! I really do think that building awareness helps people not just lump everyone together. Two of my siblings struggled with dyslexia growing up and it was before people knew all that much about it. Their teachers just got frustrated and angry when they didn’t respond the way “normal” children did. I don’t think most people mean to be hurtful, if they just understood…
We had that problem with my son before he was diagnosed- teachers expecting to “just behave.” It’s gotten much better now, with understanding.
I have a BIL who is on the spectrum, with Asberger’s. He is in his late 40s though and no one really knew what was going on when he was a child. I am just glad there is so much more awareness about it now.
I do think it’s much easier these days because there is more understanding.
My heart aches when I think of the lifeguard getting frustrated with him. I understand how much we expect in terms of social interaction with people, but it has to be really hard for a child to understand these “rules” and also to understand why they are being yelled at. For in truth, they aren’t doing anything wrong. I know the spectrum is large and I know everyone’s experience is a little different but I can’t help but think you captured so much of what many families struggle with perfectly.
Hugs to Little Bear. And Mama Bear too. ((Hugs)).
Thankfully that other lifeguard was there- she knew us and knew I was about to rip into the chick yelling at my son.
“its my hope to spread some awareness that leads to compassion” I love blogs for this reason. I’ve learned so much from other parents who have a child with special needs and it is always a learning experience when I read the challenges other families are facing. Thank you for the deeper look at some of your son’s characteristics. I think you are definitely raising both awareness and compassion by sharing them.
Thanks so much, Jo Lynn!
I have great respect and compassion for you and other moms who have so much more to deal with than moms like me. Blogs like yours do spread awareness and hopefully breed a greater understanding for those of us who don’t have these issues on our plate.
Thanks for Pour Your Heart Out. I needed it this week!
It is hard to understand unless you’re in the situation. I know I had no clue until I had a child with special needs.
I see you just had a loss. I’m so sorry. xo
Thanks for sharing this with us. I work with mentally handicapped adults and one little boy I watch is severely ADHD; to the extent that people will often think he has autism. I’m in the public with them sometimes and while most people are understanding of who they are, others look on and judge.
Raising awareness is so important; not only for understanding towards parents, family and caregivers, but also for the future success of the child.
I do like how you call him “little bear” that just makes a lot of sense 🙂
My husband did work like that for a while, too. And would often get looks. Thankfully, I think people are becoming more understanding.
Whenever I work with a child who is struggling because of some sort of challenge my heart always breaks because I know how much easier it would be for them if they could just do what is the norm. And most of the time they know it.
Thanks for sharing about LIttle Bear.
Friday night, Hubs and I were eating dinner after the kids were in bed and I ended up crying all over the table, talking about something that had happened that day- something that should have been easy but ended up being so freaking hard, and how I wished that it could just be easy.
Thankfully, we now have more good days than bad. I try to remind myself of that during the rough days.
I so feel for you. Bear has so much to deal with. Thankfully he has a wonderful mom who advocates for him.
Thank you! xo
I am so happy to read this and not feel so alone sometimes! Liam is wonderful and special and full of specific needs and sometimes it gets tiring and frustrating and annoying when people make comments that are just useless. We have many of the same struggles as you. He has actually become a hoarder wherever he goes these days, collecting treasures at each place and holding onto them for the duration of the time we are there!
I linked up a story of one of our not so great afternoons to share with everyone!
It bothers me when people say or think that all these problems would go away if *they* were in charge of my son, like it’s just a discipline issue. It makes me want to say go ahead, take him for an hour… except that I wouldn’t truly want to turn him over to someone else like that. 😉
I’m so glad you shared your story…so that others could relate. You really did a great job of conveying the message that not every child is the same that is dealing with autism but this is your daily life and your perspective.
Thanks, Natalie!
I love that you shared this. I love getting a window into what your day to day life is. No matter what it is. I think dealing with any sort of “outside the norm” thing whether it be medical or emotional or academic or whatever makes us stop before judging because we know that everyone has something that they are dealing with. If I ever see someone out and about that is struggling, I immediately think, “I wish it were easier for them.” The best part of this post is that someone is going to read it and think twice before they judge.
It’s definitely made me more understanding of others and way slower to judge. I have moments when I wish things were easier for other families and to be honest… for us some days.
Thank you for sharing your experience, it really does help others (like me), who have no idea what your family deals with every day, to empathize more and be more understanding and, hopefully, less judgy!
That’s what I was hoping for!
Bless your heart… I am so glad you shared this piece of your world and those issues you are challenged with daily. BTW- I did it! I joined the link up! YAY! 😉
Glad you joined in! Will be over to read soon!
I was a special education teacher before staying home with Claire. I have taught many kids with PDD. The one thing that I think people need to know is that children with PDD are not their diagnosis. They are first and foremost kids with the myriad of strengths and weaknesses that makes us all human.
Absolutely. All kids are kids first, not their diagnosis.
Thank you for sharing so intimately and for educating me on autism. I value your insights and experience and think you are amazing.
Thanks Mary. Though I’m not amazing. 😉
Loved, loved that you shared this. We all need to be so aware. It is just so easy for us all to lump children in one category and expect the same responses from them when indeed each child is unique and different in their own ways. I remember having a 90 minute conversation with my father-in-law over why my highly sensitive oldest boy became extremely upset over what seemed like “little” things. “Not normal”, he kept saying. “Different for you, normal for him.” I said.
Big hugs to your brave, beautiful Bear. You’re such amazing Mom.
Ugh- how frustrating to hear “not normal.” All kids have their own normal.
This is such great information – I wish I had stumbled upon this years ago. I had a friend whose son really displayed almost all of these characteristics. So much so, that I dared to suggest that he be evaluated. It was a most uncomfortable conversation, one that really never resolved itself. As a parent of a special needs child, would you have been offended if someone suggested there was something different about your child before you were ready to “see it”? And how do you approach something like that in a helpful well? Is that even possible?
I think it really depends on the parent. Some are open to it, some will just be offended. A very tricky situation.
I really don’t know if I’d say anything unless it was a really close friend and I’d spent a lot of time with their child.
Thanks for sharing your story. I am a special needs Grandma with a grandson with Aspergers and a granddaughter with dyslexia. I have seen all my daughter and son-in-law go through for their kids everyday. It’s not easy. And it’s not easy for the kids either. I can only imagine what it feels like to be afraid all the time.
It’s definitely not easy. But there’s still so much joy there.
What can I say? This was excellent and straight from the heart. Thank you so much for educating so many in this regards. I’m pinning this, sharing it etc… Bless You and your Little Bear 🙂
Thanks, Kathleen!
Really took a lot from this post. I have always felt that my 6 year old son is high functioning on some sort of spectrum. Being a former teacher, I know it can look different for everyone. And he is one that would not stand out or may not be identified through testing but he does all of those things your son does and he is our middle child which makes it difficult. Have you ever written a post on how he was diagnosed, I would love to read it if you have. And where do you get tools as on how to help him?
Thank you for sharing!!!
I haven’t gone into detail about the full evaluation process. Though we started with private testing rather than going through the school. PDD-NOS basically means having some of the characteristics of autism but not enough to be categorized as any of the other types of autism. We were referred by our primary care doctor to different therapists and the school has been wonderful as well.
He sounds so much like my Ryan. He prefers to be alone, playing in his room. There are times he does want his sister to play with him but it is very brief. There isn’t a lot of eye contact with him either. For a very long time he was stuck on Transformers. That was the only toy he wanted to play with, I think he had them all. Now it Lego. All Lego all the time.
My oldest only wants legos right now. I feel like the house is overrun with them!
Thanks for sharing, Shell. You are right, taken apart, we all do some of these things, but when you put them all together it’s a whole different ball game. The lifeguard story makes my blood boil. I knew lifeguards are often young, but good grief!
Late to the “party” today!
It’s been over a year and I still get annoyed thinking about that lifeguard. I may have an issue letting things go. 😉
Thank you for breaking it down like that. I think the more people talk about some of the actual behaviors, people will have the opportunity to react in better ways when a difficult situation arises.
and the behaviors can be so very different in each child. So I totally get that it’s hard for anyone who doesn’t have a child with special needs to not understand.
First, I love your blog and need to come back more frequently! It’s so pretty!
I jumped on here via the UBP13 linkup, but I’ve been before, love connecting with you in our other social media worlds, and certainly will be back!
Wanted to share that I also did an autism awareness linkup. The posts there cover a lot of topics, but many touch on what awareness means to each blogger. Would love for you and your readers to visit and link-up there, as well: http://goo.gl/BhNnI .
I really like the approach of your post too – a snapshot of your autism experience.
I will share and link up! I have to admit that sometimes I get intimidated by stepping out and speaking about autism because it’s such a personal thing to each family- and our experience is different than others and I don’t want to offend any other family. But then I wanted to talk about some of this for those families who don’t deal with it so they would have more of an awareness of what it possibly could be like. It’s a hard line to walk.
I still love your candy crush analogy. 🙂 Thanks for stopping by!
Shell, thank you for sharing your experience. I like that you’re very measured in your tone, and emphasize that this is YOUR family’s experience, and it’s different for everyone. Your sensitivity to this is what I love most about your approach. Thank you.
Your son sounds delightful and how mine would be if he didn’t have anxiety/anger/control issues to cope with as well!
Thank you for sharing. My oldest has a lot of these same traits just to a lesser degree- he has more of sensory integration disorder. Glad there was a nice life guard who knew you guys better as that could have been totally awful.
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