August 2, 2008
This Is My Normal
Three of my four kids have sensory processing dysfunction, a condition that exists when sensory signals don't get organized into appropriate responses. The jury is out on the two year old but I'm starting to see some signs of what's yet to come.
When the older three were toddlers I never questioned if any of their quirks were abnormal. I grew up with quirkiness and odd behavior in my family so it didn't phase me much when my own kids began demonstrating some of those behaviors.
I was underweight as a child (no longer a problem) because of my pickiness over food. One of my cousins couldn't stand to wear underwear and another one had tics. My brother had learning disabilities and my mom is a mental illness cocktail of bipolar, OCD, Borderline Personality Disorder, anxiety and a dash of psychosis.
That was and is my normal.
It's other people who question my kid's behavior and insinuate that if I was a better parent they wouldn't have these idiosyncricity's. So I honed up my parenting skills by reading every book I could get my hands on and sought advice from friends but there were times that disciplining certain behaviors seemed cruel.
One mom told me that I shouldn't let my son leave the dinner table until he ate at least three bites of each thing on his plate. Seemed reasonable but what do you do if your son is crying and gagging over a food as if he was being forced to eat slimy cow brains?
Another mom was horrified when she saw Isabelle's dingy and thread bare underwear. The only pair that felt "right" to her so she wore them everyday until they literally fell apart. It was useless trying to explain to this mom that most underwear caused Isabelle to scream in pain as if it were burning her. I was just thankful that we found one pair that felt right.
Then there were the well meaning folks who would tell me to put a coat on my son before he catches a cold. How could they possibly understand that making him wear a coat would cause such a meltdown that we wouldn't be able to leave the house? He certainly didn't mind being cold. To him it was better to be cold than to feel like he was suffocating or choking in his coat.
Some folks aren't well meaning but the judgemental types who give that look with their observations. You know, the look that says, "Shame on you for letting your kids do whatever they want!"
Those are the folks that get a snarky reply from me if they catch me on a bad day. When they point out that my toddler's shoes are on the wrong feet (to her they feel better that way) I respond with, "Of course they are. Her toes are transposed" or if they comment about my son not wearing a coat I respond with, "He can't wear one. He has a rare disorder that causes his body to overheat."
I'm mature like that.
My point is that it is very hard to make someone who doesn't have any experience with sensory issues to understand my kids. And that's okay because I know that these are the kids I was meant to have.
It's my normal.
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12 Comments on This Is My Normal »
#1 - Jaime @ 10:18 am
For the record, the comment I hate the most is "If he gets hungry enough, he'll eat."
It is challenging to deal with other people's perceptions — or my perception of their perceptions, even if they don't make any comment.
You made me cry with the last line, though. Thank you for saying this.
My mom always says that Tyler is lucky to have me and she is amazed by my patience (even when I don't feel very patient). Maybe we are the parents our children are meant to have, too.
#2 - Kirsten @ 11:07 am
I completely agree with you, know it alls that have a superiority comple annoy me too.
Our local paper has a website and you can comment on different articles. There was an article about how someone thought all teachers should get some sort of special needs training and one mom went off about how this one kid was disruptive and shouldn't be in her sons class and what about the other 14 kids in the class. Several people tried to explain to her that the school and parents have IEP meetings to see where the child should be placed and they wouldn't place him there if he didn't meet certain criteria. She wasn't having it, she was just a nasty piece of work. Apparently the boy had Aspergers/Autism and she wasn't prejudice as her cousins, sisters, aunt had a child like that. A few people suggest she move her son if she was so displeased but she seemed like she was just one of those moms that can't survive without something to gossip about. I was sooo outraged and couldn't believe her ignorance and stupidity. The kicker the kids in the class didn't really mind the boy, it was the parents.
Kirst
#3 - Barbara @ 11:29 am
Good for you! Your children will benefit by you defining and defending your life and lifestyle.
#4 - Font Conference @ 11:41 am
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#5 - Veggiemomof2 @ 2:59 pm
Thank you for today's post. I needed a reminder that it is OK if your child is different & doesn't fit into any 1 mold. It is OK if you are not looked at as a "perfect" parent & it shouldn't matter if your child's behavior reflects on you, as long as they feel loved.
#6 - lonestar818 @ 3:38 pm
Great post! As a mom with three boys who have autism & sensory integration disorder, I can totally relate, this is my normal too :).
We get a lot of those looks (and comments) too, the more time goes by the better I get at blowing them off but they are still annoying.
You're right, it's almost impossible to explain to someone who hasn't experienced it. I'm just glad my kids are mine!
#7 - Melody @ 4:08 pm
I just want to hug you. It feels so good to hear from parents who live the same "normal" life, and who can dish out the snarky remarks when no other will do.
#8 - Amy @ 12:02 am
As a Mom to a 13 year old with sensory integration/aspergers/adhd, I can fully relate to this blog. I can't tell you what a sweet victory it is to find "good socks", and how hard it is to have to replace said socks when they wear out or his foot grows! Never a dull moment in our household!
#9 - Tammy and Parker @ 2:34 am
I absolutely love, love, love this post. You sing it, Sister!
Posts like this give other parents the strength to stand up for their own kids 'normal.'
#10 - Trish @ 9:22 am
I can't imagine anyone else loving and caring for my son the way I do, even when he frustrates me beyond belief.
And, yeah, my response to strangers varies wildly depending on my mood and whether they seem to want to connect versus want to give their input into my parenting skills! I have been known to ask how many years they have spent working with autistic children, which usually shuts them down.
#11 - Tammy @ 1:07 am
My 4 year old son starting OT in June and we are relieved that his sensory processing has been formally diagnosed and he is getting help from it. His ultra cautious behavior (he is not hyperactive - quite the opposite) and his inability to cope with unpredictability around his own peers was distressing. His touch issues became more apparent the last year. Even though I regret not getting him in sooner, I feel so blessed that there are others I can read about or work with.
A few weeks a go we were at a Pump it Up party and he about lost it because of the noise and desire to not participate that I felt very sad because he just wouldn't join in,even with me, and have fun. When we left the party after cake and ice cream and his goody bag - he says "mom, I had fun at Jake's party." I was floored - it was a great moment to understand that his sense of "fun" which is usually visual was different than mine.
Thanks for sharing your story. Little things like reading it make it the road less traveled easier because I know others are taking it too.
#12 - Alicia @ Experiencing Each Moment @ 3:06 am
As I began reading I was laughing with understanding and now I'm just in a pool of tears. Some days the SPD just looks quirky and then other days (like today) I feel like it is going to consume our lives forever. I'll always be an outsider never being able to explain my son to other people. Tonight it's painful.