Tuesday, March 13, 2012

Living With Sensory Processing Disorder

Welcome to the March 2012 Carnival of Natural Parenting: Parenting With Special Needs
This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared how we parent despite and because of challenges thrown our way. Please read to the end to find a list of links to the other carnival participants.



I briefly touched on what it's like to live with a child who has Sensory Processing Disorder (SPD) in a picture piece over at The SPD Blogger Network but thought I would go a little more in depth as part of this months NPN Blog Carnival Parenting With Special Needs.  I just want to touch on 2 things really. 
1-How hard it can be to try and remain a peaceful parent when your child has SPD
2- How surprisingly UNsupportive people can be, especially about SPD which many see as a "made up" condition to excuse away bad behavior.

playing in shaving cream as part of her SPD therapy


If you have never heard of SPD you can read my beginners understanding of it here (I learn every day)
Or you can read about it:
http://www.spdfoundation.net/
http://www.sensory-processing-disorder.com/
http://www.sinetwork.org/about-sensory-processing-disorder.html



The main struggle I face when it comes to having a child with SPD is patience and remaining calm.  Its much easier to be a peaceful parent now that I know there is a reason behind her maddening behaviors BUT that doesn't mean I get it right all of the time.  It's still frustrating and in the heat of the moment I often loose sight of the reasons why she may be acting this way.  Even the smallest everyday things in life that many take for granted are battles in our home.  Such as getting and staying dressed.

A typical child is normally easy and willing to get dressed and you don't usually have to worry about them taking the clothes off once they are on.  That is not that case for Karma.  Due to the SPD clothes are hard for her, especially underwear, shoes and socks.  She does not like the way they feel against her skin and says they "hurt" when on.  Getting dressed can be an 30 minute (or more!) ordeal full of tears and melt downs and once I have the clothes on her I can pretty much bet within the hour she will be completely undressed once again (she might keep her shirt on, if I am lucky).  I used to battle with her every day on this one but I have since decided that it's really not that important to me that she wears clothes each and every day, she is not even 3 yet.  We get dressed when we have places to go or people coming over and the rest of the time it's up to her.  Dresses are the best, she is more likely to keep a dress on than any other article of clothing.

When you have any child, typical or special needs, you have to learn when to pick your battles.  I have decided clothing is not a battle worth fighting, for now.  To many, especially those who drop by unexpected, I am sure I look like a somewhat neglectful mother but there is a good reason why my child runs around partially clothed at best.

Still, even with my learning to let some things go, keeping my cool and staying that serene and patient mama I long to be seem unattainable most days.  The hardest part for me has to be when I need someone to talk to.  Sadly I have learned who I can and can not vent to on this subject sadly.  I used to just vent openly about things like "why won't my child stop smearing her poop?" or "Karma just climbed up the bookshelf AGAIN!" and instead of being met with the support/wisdom/"been there it get's better"/love I was seeking a few seemed to see it as the perfect opportunity to judge my parenting asking "where were you?" "how does she have time to do this?" etc.  Let's see, where was I, probably going to the bathroom or attempting to do some sort of chore around the house such as laundry or the dishes.  How does she have time, well many things take her only seconds and I can't exactly sit on her 24/7.   Oh, and there is always my "favorite" response of all "just spank her butt, she will stop"..... you can't spank away SPD!

The lack of support amazed me but by far the worst has to be those who tell me things like "SPD is not real" and "you just want something to be wrong with your kid so you can be a martyr mom" and YES, someone has said BOTH of those to me!

Sadly, Sensory Processing Disorder is not yet recognized in any standard medical manual and because of that many feel it is a "made up" disorder.  The first thing people always ask is "what medication is she on?" and when I tell them there is no medication for it they take that as yet another reason why it can't be a real disorder.  I get the "oh, every kid is like that/I was like that, does that mean we all have SPD?" comments all the time too.  Many think SPD is a made up diagnosis to excuse away bad behavior and I have been told I am "too soft" on her and if I learned how to "discipline properly" she wouldn't have these issues anymore.

Living with a child who has sensory problems is hard enough, having people so blatantly unsupportive telling me its "made up" and I "want something to be wrong" with my my kid does not help.  Why would anyone WANT something to be wrong with their child?  We all want the best for our child, we do not want them to have any obstacles in their way making life harder than it needs to be.

Still, don't pity me, I would not change a thing about Karma (or any of my kids for that matter) including the SPD.  Sure, it's hard BUT I know it is shaping and molding the person she will become.  This girl has no fear and, put to good use, this can be a true asset in life.  She has the BEST balance of any kid I have ever seen, she's solid and strong.  She will never be a big push over (like her mama) in life.  No, she has the makings of a leader, someone who will one day make a difference and stand up for whats right.  I joke that I can easily see her growing up to be some sort of athlete/gymnast or stunt woman (man she would LOVE that, the kid LOVES to fall!).

In the end, living with a child who has any sort of special needs is difficult but the rewards of it far out weigh the challenges.  I am becoming a better mom because of all of this.  I don't automatically assume my kids are "out to get me" and doing things just to spite me.  I do not see their behavior as something I must conquer but as a sign or symptom of some under lying issue.  A way for them to express to me something is just not quite right.  Again, not the perfect saint mama over here, boy do I have my days where that little voice in my head says "I swear she is doing it just to drive me nuts!".  The voice is getting quieter though.  As we make our way through our therapy and I see her morphing into this new child before my eyes I know it's a real disorder and I know it's something we can over come together.

Love,
Christy


A little PS to add as this started VERY recently, after I initially wrote this piece to include in the Carnival. 

Karma has recently become obsessed with escaping out of the house.  She can unlock and open the front door on her own.  Weather and her almost constant lack of clothes does not deter her and she will run out there in the cold, rain, whatever completely naked.  I cannot leave the room for a second without returning to find her either opening the door or streaking across our lawn.  So add another element to living with a child who has SPD and that's FEAR!
She has never met a stranger and loves everyone, begs people to pick her up, take her to their house, etc.  She loves to fall and intentionally falls from ever increasing heights.

Yes, there is a huge element of fear that comes with living with a child who has SPD. 
In fact, as I sat down to quickly type out this little addition she made it outside TWICE!  I forsee a chain lock installed VERY high up on the door in the near future (like this weekend!!)

***
Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!
Please take time to read the submissions by the other carnival participants:
(This list will be live and updated by afternoon March 13 with all the carnival links.)

17 comments:

  1. I'm so clueless that I had no idea SPD was not medically recognized. Is it in the DSM? The symptoms are so clear - I'd be surprised if it wasn't! The things people say are shocking - there is a lack of social filters in some people's brains.

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  2. no, it's not in the DSM, there was a petition and major movement to get it added to the newest one, set to be released 2013, I don't think it made it in though and the next one will not come out until like 2020 something :(

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  3. I didn't know much about SPD until Dionna from Code Name: Mama mentioned it to me once when I asked a question about how she dealt with a certain stage with Kieran and she said he'd never gone through that stage, lol. I am still not sure my son has it-if he does, it is mild, but he certainly has some unique and challenging behaviors (he is super climby and an escape artist too-we are installing a chain lock this weekend! And he cries and screams when get gets messy. He will not finger paint. The shaving cream picture? He would be in tears and bashing his head on the table out of frustration if I tried to get him to do that.) Anyway, it is awesome that you are so in-tune to what is going on with your daughter, even when people are such critical jerks about it. She is lucky to have you as a mama!

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  6. Wow!! What is amazing is the things people say to mothers of children with special needs. No one can even begin to imagine what you are any of us deal with on a day-to-day basis. I wish people would come from a place of support and love instead of one of criticism and judgement. Let's assume mothers are all doing the best they can.

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  8. Wow - I am SHOCKED at the negative comments by people who clearly can't support anything they say by cleverly using "anonymous" in their posts. SPD wasn't recognized when I was a child but looking at a checklist after I was an adult, my parents decided that I probably had some of those tendencies. All you can do as a parent is love and try to understand. Keep it up.

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  9. Thanks Hannah :). Internet trolls, what can you do :). Where there is a place that allows comments trolls are sure to surface at some point. The beauty of being the blog owner is I can just delete said comments :)

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    1. That is the beauty of it. How unhappy with themselves must they be to try to bring others down.

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  10. Ugh, sometimes people are just awful. I hope you take comfort in the fact that even within this carnival is at least one other family dealing with SPD! It definitely IS real, and you are a good parent for dealing with it so patiently and gently. I hope you find a good way to keep Karma inside and safe — yipes!

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  11. Christy, you are clearly a thoughtful and loving mama, and your daughter is lucky to have you as her parent. My son also has SPD, and I can totally empathize with some of what you've been through with negative comments from others, as well as with struggling with patience and understanding on a day-to-day basis.

    It really is a HUGE challenge to parent a little one whose (mis)behaviors are sensory-based. I've been told by more than one OT that traditional punitive discipline techniques (time-out, spanking, etc.) are not at all effective for treating sensory behaviors because they (as you mentioned) punish the *behavior* which is merely an acting-out of a sensory symptom. It's not something the child can control, otherwise they WOULD. (I mean, who of us likes to be feeling out of control of our bodies and our actions? We always WANT to do the right thing.)

    Sorry for the book. ;) I just want you to know that you're not alone, you're doing great work, and kudos to you for standing up to all the (misinformed) bullies who are trying to convince you otherwise!

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  12. I found you through the carnival, and your PS made me laugh. I also had a SPD child (now he's a teenager), and we had the same need for a high lock on the door RIGHT NOW. He managed to escape once while I was in labor with kid #2, and thank goodness the mail deliverer brought him right back because I can just see myself chasing him down the block in between contractions... (OK, it was early labor, so it wouldn't have been that hard, but still)

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  13. Hang in there, Christy. SPD is challenging! And you are doing an amazing job.
    I say about my son who has ADD; 'When he grows up he is going to make a very interesting adult! He will be inspiring, and lead people, and be the most amazing, fun dad! IF WE GET HIM TO ADULTHOOD ALIVE." This often makes people laugh, and it is intended to be funny, but it is also dead serious.
    I feel your pain, on the safety/fear front. Oh my mother, do I ever. Whew.
    It also resonated with me the whole parenting a child with a disorder and feeling frazzled for patience. We are human! That's so tough. In my experience, it gets better as your child gets older (but you know, we're not at teenager stage yet...cross that bridge when we get to it).

    Your daughter is so fortunate to have landed in a family that respects her as a person and parents her gently. Great job.

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  14. Hi Christy,

    I am curious about your statement "She has never met a stranger and loves everyone, begs people to pick her up.."

    Christy, I have a three and a half year old son I am very concerned about. I am pretty sure he has sensory processing disorder, but he has not yet been diagnosed. He has an appointment with the top pediatric neurologist in the city. Unfortunately, his appointment is almost three months away. My sister is a neurologist, but not a pediatric one. She feels he has SPD.

    I am deeply concerned it is more than that. I am worried that he is on the autism spectrum. One of his quirks is his response to strangers. He approaches everyone! He hugs complete strangers! In fact, he tried to go home with the creepy refrigerator repairman the other day.

    Christy, do you know if the lack of fear of strangers is part of SPD?

    Thank you so much!

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  15. Hello.. My sweet little 4 yr old guy has SPD also…and just recently found out he is dealing with ADHD as well. Our son was Dx by his OT just over a year ago and with OT and a great preschool/daycare program was doing fabulously until we moved to a new state….the new state has been very difficult to get him services…after being here almost 6 months we are finally starting to get "our ducks in a row"…and praying things get better soon. He's doing OT again, integrative listening therapy, seeing a child behavioral psychologist and we're (verrrry) slowly making progress. I totally identified with this post - especially the part about getting dressed/undressed and trying to remain calm with all the challenges. It's a crazy life at times, but just part of the territory I am realizing and just learning to adapt, adjust, pick our battles and give as much sensory diet input as we can….and ignore the comments, nasty looks and ignorance of those who refuse to believe SPD is a real disability…which it is!

    Not sure if you belong to any - but there are some great support groups for SPD families on Facebook. Angie Voss' Understanding SPD website is awesome and her Facebook group is a lifesaver! There's SPD Connect, Sensory Parents, Sensory Processing Parents, etc….lots of great info and place to connect with other moms and families like us.

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