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Asd and/or spd moms--is this your experience?

kcisthebombdotcomkcisthebombdotcom member
edited November 2013 in Special Needs
Sorry if this gets long!
Some background info: my dd has been diagnosed with epilepsy and severe sensory processing difficulties. We have her ADOS next week.
My kid is two completely different people. It seems like some days the sensory issues are out of control and other days she appears close to typical. We follow a sensory diet. To illustrate how drastically different our days can be, here's an example of two different days with the same schedule at the same place (the y's childcare room).

Day 1: dd ran around the room in circles for the majority of the time verbally stimming. When i tried to redirect her from that she would stay for maybe thirty seconds and Went back to running in circles. She ignored other kids and became agitated when they went near her when she was playing with something. Limited response to name. Didn't utter a single word outside of no. Spent a short time coloring, pushing trains, and building with blocks.

Day 2: when we walked in the room, she immediately went over to a child her age building with large blocks. Took turns back and forth putting blocks on the tower for about five minutes. When her playmate pushed over the block tower and said "crash" she mimicked what she did. When other child's mom told her it was time to go, she said bye to her without prompting. After that she moved onto playing at train table for five minutes. Went to a bin of animal toys and brought each one to me saying cow goes moo, duck goes quack, etc. went to a play kitchen and cooked me lunch. Pushed cars down ramp and when another child was paying attention she said "see" and showed her how to do it. Sat at table for about ten minutes and colored with me. I wrote letters on a paper, she would repeat them, then color over them. Played with Legos.
Same place, same schedule prior to going, two entirely different reactions to the same stimuli. Is this something you experience? Any insight/commiseration appreciated.
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Re: Asd and/or spd moms--is this your experience?

  • funchickenfunchicken member
    KC, my DD doesn't have ASD, but she does have SPD, and it definitely can change from one day to the next. I think The Out of Sync Child talks about how inconsistency is a hallmark of SPD. S has vestibular issues that affect balance, motor planning, and bilateral coordination. Some days she trips over her own feet, falls out of chairs, bumps into walls--other days she seems fairly coordinated. Some days her schoolwork will look amazing, no letter reversals, very neat--other days it's like she can't get her hands to do what she wants them to do. It can be incredibly frustrating for her. I'm interested to see what other people's experiences are with this.
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  • august06momaugust06mom member
    Yes, this sounds a lot like DS2. Some days I doubt his dx while other times I think it's spot on. I'm starting to think that his good days are the result of all the special instruction he's been receiving.
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  • kcisthebombdotcomkcisthebombdotcom member
    mrszee2b said:
    KC, my DD doesn't have ASD, but she does have SPD, and it definitely can change from one day to the next. I think The Out of Sync Child talks about how inconsistency is a hallmark of SPD. S has vestibular issues that affect balance, motor planning, and bilateral coordination. Some days she trips over her own feet, falls out of chairs, bumps into walls--other days she seems fairly coordinated. Some days her schoolwork will look amazing, no letter reversals, very neat--other days it's like she can't get her hands to do what she wants them to do. It can be incredibly frustrating for her. I'm interested to see what other people's experiences are with this.

    Interesting. My older child also has sensory issues and certain times are worse than others, but not to the extreme of nonverbal vs talking in sentences. I can always stop him from spiraling by putting him on a trampoline or squishing him with pillows while with dd it's like one day swinging is organizing and the next it makes things worse.
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  • kcisthebombdotcomkcisthebombdotcom member
    august06mom said:
    Yes, this sounds a lot like DS2. Some days I doubt his dx while other times I think it's spot on. I'm starting to think that his good days are the result of all the special instruction he's been receiving.

    Here's hoping the good days take over entirely down the road. :)
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  • funchickenfunchicken member
    Well, with S sleep can play a big role in how organized she is, and sometimes I think her allergies can cause her to have fluid in her ears and that can throw her off. She'll have more motion sickness in the car or during her therapy sessions. She almost threw up at therapy one day because they were doing a spinning activity, and she was getting over a cold. She'd done the activity before without a problem.
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  • typesettypeset member
    edited November 2013
    ASD Dx. I've talked to other moms who have experienced the good day/bad day phenomenon. It's very disconcerting when you're in the nebulous "do we have a Dx or not?" stage. There'd be a great day and I'd convince myself it was all in my head, and the next he'd be a complete stimmypants and impossible to engage. Now I can tell which kind of day it's going to be within five minutes of opening his door. 

    Wish they'd issue memos. 
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  • pastaladypastalady member
    Yup, sounds familiar. With DD we have days where even DH will say, I swear she cannot have autism. And days where we both wonder if she is at a way lower functionality than we think.

    I have a friend who only sees DD on bad days, just the way it's worked out. She thought we should look into a odd diagnosis. My DD has never spoken to this friend, ever. My BFF, on the other hand, has never once witnessed a meltdown. She's watched her overnight. She takes her places alone. She does not understand why DD has a diagnosis. 

    Is there any difference other than environment? Overtired, hungry, etc? 
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  • typesettypeset member
    pastalady said:
    Is there any difference other than environment? Overtired, hungry, etc? 
    Barometric pressure? Butterfly flapped its wings in Tibet?
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  • kcisthebombdotcomkcisthebombdotcom member
    edited November 2013
    typeset said:
    ASD Dx. I've talked to other moms who have experienced the good day/bad day phenomenon. It's very disconcerting when you're in the nebulous "do we have a Dx or not?" stage. There'd be a great day and I'd convince myself it was all in my head, and the next he'd be a completely shut down stimmypants and impossible to engage. Now I can tell now which kind of day it's going to be within five minutes of opening his door. 

    Wish they'd issue memos. 

    The best part is I've seen geneticists, neurodevelopmental pedi, neurologist, ot, etc etc etc and every single one ive inquired about this happening stared at me blankly.It's relieving to know this is common.
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  • typesettypeset member
    -auntie- said:
    The great irony is that in terms of ASD behaviors- DS was always best as a little kid when under the weather. A virus with a fever or some strep and he's almost NT.
    +1 


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  • Micelle78Micelle78 member
    I can totally relate.  Every Sunday we have "family dinner" with my brother, his wife, his 3 yo, his 18 month old, my parents, my sister, and my family (including my sensory 3yo).  He will be super distracted, not speak in many words, will walk the perimeter of the room, will avoid everyone, and will appear deaf to his name.  Then everyone will leave and it will be just me, him, and my parents and he will start wanting to have conversations and act like a totally different kid.  He will want to play a game with you, read a book to you, or something.

    He has a speech delay but it is more pronounced when there is a lot going on.  I love my nieces but they are loud and very active (like my son is when its just me and my husband) but I think that he gets over stimulated and I think has trouble processing everything and gets quiet.  Then about every 4th or 5th Sunday he will act like its no big deal and almost appear NT.  It makes me want to cry because my brother and his wife do not see how much better speech therapy has made his communication because he shuts down so much around them.  Not that it matters, but I always feel like they don't completely "get" my life and it looks like I am lying when I say he is doing so much better.

     
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