It's been over a year since I posted here. It's been a hell of a year and I don't really know where to start. I ended with flatrock25k which was not a good race for me, not one I'm proud of anyway. Yes I did it, yes it totally sucked, yes I signed up again at the first opportunity (I'm awesomely crazy like that). Then there was some family drama around the holidays that started a downward spiral and a trip through the bell jar. First J's OT dismissed him due to a personality conflict, and while I agree with the decision, it still hurt to have someone that's helping your kid tell you they can't help anymore. That and the family drama happened the same week I had to schedule J's MRI (to check for brain malformations, shrinkage, and possibly but unlikely tumors). Which is more terrifying to think about than I can possibly put into words. Needless to say I was an emotional mess. At the start of new year my running really became an outlet for the worry and stress which in a way is a good thing. The stress is not good, but having an outlet was. My mileage was ticking up and up, my weight was going down. All good things...except I wasn't feeling better. I wasn't feeling like me. I felt I had a mask on. I laughed when expected and then went stone faced when nobody was looking because being actually happy didn't happen anymore. I was tired all the time, like I can't get out of my chair to get the kids milk tired. I needed help.
After talking to a friend I decided it was time to talk to my doctor. Meds were prescribed, the fog lifted, and I found me again (mostly). The fog is still there and still visits from time to time. Some days it feels like it's just waiting for an opportunity to come steal my happy again. Like a hungry dementor from Harry Potter following me around. It wasn't pretty and some days it still isn't.
Thankfully J's MRI found nothing scary. The Neurologist ordered another 6 months later. It showed no change. The Neurologist agreed with the dyspraxia diagnosis. Then we had him evaluated by a Neuro-Psychologist. She seconded dyspraxia/DCD (DCD = Developmental Coordintation Disorder. It's the current US medical term for dyspraxia, but they can both be used) and Sensory Processing Disorder. Then she added ADHD, a phonological pronunciation disorder, and dyslexia (the only real surprise is the pronunciation disorder). All of this was very helpful to J's team at school, which thankfully continues to be amazing.
Overall, not a bad end to really unpleasant year. There's so much more that happened and I wish I'd kept up the blog better, but we're here now. Moving forward.
Showing posts with label Sensory processing disorder. Show all posts
Showing posts with label Sensory processing disorder. Show all posts
Wednesday, October 22, 2014
Tuesday, August 27, 2013
Being told your kid has special needs...
... regardless of the level of their special needs, is the hardest thing I've ever experienced. Prior to that all the oddities were just quirks, he was his version of normal and would be okay or grow out of it. Now though...it's like mourning the loss of something intangible. Mourning the loss of normal. No, we never really had normal and technically nothing has changed, but it has changed. These things are not just quirks of his personality. They are neurological disorders. Neurological disorders that will last his entire life.
Could it be worse? YES, it could be so much worse, but that doesn't take away the feelings of hurt and sadness over the loss of the life you thought this child would have. The loss of the things you'd get to do with them. This fact also doesn't make it okay that you now have to do therapy with them every.single.day just so they can have a decent day (which for the record effing sucks and it's okay to think it effing sucks).
So...my suggestions to people who have a friend going through this. Don't dismiss their feelings whatever they are. Don't tell them their kid will be fine. Don't say things like "Oh, my kid(s) do that too. It's normal", "But he's just a kid. I don't see XYZ disorder so he must be fine" or "Boy there's a diagnosis for everything these days". DON'T tell them it could be worse. WE KNOW. Just give them an open place to talk, scream, cry, whatever and above all else don't make them feel guilty or wrong for however they are feeling. They have enough guilt as it is.
Tuesday, July 30, 2013
Running the rest of my life. AKA...the kid post
So far this blog has only been about my running...which as an often injured mother runner there hasn't always been much of...or at least not blog worthy. However, even when I'm not running for runnings sake I'm still running. Running kids to school, running to get them from school, and lately running to figure out "what's up" with our oldest kiddo J (aka Buddy, sweetheart, or "the big one"). Now let me start by saying that I've suspected something was different about him for years...I'd say from about 1.5 -2 years old. We knew he was different from some other babies & toddlers but thought he'd grow out of it or that it wasn't a big deal. I mean everybody has nursing problems, a kid that wakes up SCREAMING (every.single.time) for years, and an infant that would prefer to be alone in his pack and play at daycare than playing with the other kids right (J was in daycare for about a year before I started staying home)?? Oh hindsight...20/20 as always.
Nearly two years later we had kiddo number two and we started to realize just how different two kids could be. S (aka second Kiddo, pumpkin pie, or "the monitor lizard"), in comparison, was the perfect infant. He cried when you'd expect him to cry instead of ALL.THE.TIME (seriously if J was awake for 6 hours he cried for at least 4). He nursed like a champ from day one. He still didn't sleep all night for two years, but when he did get up it was easy to get him back to sleep instead of being up for hours at a time like I had been with J. At that time we were getting J services for speech delay which we thought was due to constant fluid in his ears and ear infections. Once we got him tubes his speech delay cleared up, some of his behaviors cleared up, and he magically slept through the night for the first time ever. We thought that maybe we had him figured out. We were wrong.
Pre-school started and he learned a lot. He loved it, but had a constant problem focusing and keeping his hands to himself. He also refused to do any fine motor work or to get his hands messy, but since we was making big strides in other areas we never suspected anything additional was up. I remember saying, "he'll get there one of these years".
When he started Kindergarten I knew he was behind in a few areas (socialization & fine motor skills), but figured he'd even out and be okay. As the year went on I realized I was very, very wrong. At some point the school OT (occupational therapist) was brought in and mentioned "motor planning delays". I did some googling. I found out that there was a reason my kid didn't like getting his hands messy (to the point of he MUST wash his hands or he will meltdown). A reason he ran, and ran, and ran all day without seeming to be able to stop. A reason he needed to be coached on how to talk nicely and appropriately to other people. A reason he couldn't get to sleep. A reason he screamed all the time as a baby. A reason he couldn't write his name, tie his shoes, ride a bike, or fasten a button at 5 years old. After an evaluation with a private OT we confirmed it. He has sensory processing disorder (his brain and nervous system do not communicate well with each other) and developmental dyspraxia (his limbs don't always do what he wants them to do when he wants them to do it and due to low muscle tone he gets tired quickly). As I understand it dyspraxia is technically a subdivision of SPD under SBMD (sensory based motor disorders).
If it was so bad why didn't we figure it out before?? From the outside looking in I imagine it was easier to see, since we found out we've had people coming out of the woodwork telling us they just *knew* something was wrong with him or maybe we didn't want to see. Mostly I think we just had no clue what SPD and Dyspraxia were. I'd read every symptom list I knew to look at (ADD, ADHD, Autism Spectrum, etc.) if it was plausible and I'd heard of it I read the symptom list. The problem was that they didn't fit enough for to warrant further investigation. I dearly wish I'd heard of SPD &/or Dyspraxia earlier in his life, but as I can't fix that now I feel strongly that my job is to help spread the word about it. If I can save one parent one day of worry about their kid then I will have done my job.
Further information about SPD & Dyspraxia can be found at the links below.
Sensory Processing Disorder (SPD)
Dyspraxia
Why did this happen? We don't know. As far as we can tell we had none of the typical precursors for this. Healthy pregnancy, normal delivery, full term baby. He was pretty jaundiced, but didn't require the billi-lights.
Will he ever "grow out of it" or be "normal"? I'm not even sure what normal means anymore. Is anybody actually normal?? If you mean will he ever be nuero-typical, as in will his brain re-grow those missing or malformed neurons, then no. SPD and Dyspraxia are life long conditions. There are things we can do to help him and there are "work arounds" we can teach him so that the world will be easier for him, but no he will never be neuro-typical and you know what? That's okay, because he is AMAZING just the way he is and, if you ask me, the world do with a little more amazing.
What do we do now? He'll start OT & first grade in August. He'll also go to see a sensory motor eye doctor since his eyes don't track correctly which is leading to trouble reading (he can sound out words with the best of them, but putting together sentences is difficult when your eyes can't follow the whole sentence). I can only hope that with more knowledge, some intervention, and some prodding on my part that 1st grade will be better for him than Kindergarten was. If not....I'm not sure what we'll do, but we'll figure it out when we get there.
As the proud Mama that I am I have to show them off....here's my determined, amazing kiddos. J in blue, S in "monitor lizard" green.
Nearly two years later we had kiddo number two and we started to realize just how different two kids could be. S (aka second Kiddo, pumpkin pie, or "the monitor lizard"), in comparison, was the perfect infant. He cried when you'd expect him to cry instead of ALL.THE.TIME (seriously if J was awake for 6 hours he cried for at least 4). He nursed like a champ from day one. He still didn't sleep all night for two years, but when he did get up it was easy to get him back to sleep instead of being up for hours at a time like I had been with J. At that time we were getting J services for speech delay which we thought was due to constant fluid in his ears and ear infections. Once we got him tubes his speech delay cleared up, some of his behaviors cleared up, and he magically slept through the night for the first time ever. We thought that maybe we had him figured out. We were wrong.
Pre-school started and he learned a lot. He loved it, but had a constant problem focusing and keeping his hands to himself. He also refused to do any fine motor work or to get his hands messy, but since we was making big strides in other areas we never suspected anything additional was up. I remember saying, "he'll get there one of these years".
When he started Kindergarten I knew he was behind in a few areas (socialization & fine motor skills), but figured he'd even out and be okay. As the year went on I realized I was very, very wrong. At some point the school OT (occupational therapist) was brought in and mentioned "motor planning delays". I did some googling. I found out that there was a reason my kid didn't like getting his hands messy (to the point of he MUST wash his hands or he will meltdown). A reason he ran, and ran, and ran all day without seeming to be able to stop. A reason he needed to be coached on how to talk nicely and appropriately to other people. A reason he couldn't get to sleep. A reason he screamed all the time as a baby. A reason he couldn't write his name, tie his shoes, ride a bike, or fasten a button at 5 years old. After an evaluation with a private OT we confirmed it. He has sensory processing disorder (his brain and nervous system do not communicate well with each other) and developmental dyspraxia (his limbs don't always do what he wants them to do when he wants them to do it and due to low muscle tone he gets tired quickly). As I understand it dyspraxia is technically a subdivision of SPD under SBMD (sensory based motor disorders).
If it was so bad why didn't we figure it out before?? From the outside looking in I imagine it was easier to see, since we found out we've had people coming out of the woodwork telling us they just *knew* something was wrong with him or maybe we didn't want to see. Mostly I think we just had no clue what SPD and Dyspraxia were. I'd read every symptom list I knew to look at (ADD, ADHD, Autism Spectrum, etc.) if it was plausible and I'd heard of it I read the symptom list. The problem was that they didn't fit enough for to warrant further investigation. I dearly wish I'd heard of SPD &/or Dyspraxia earlier in his life, but as I can't fix that now I feel strongly that my job is to help spread the word about it. If I can save one parent one day of worry about their kid then I will have done my job.
Further information about SPD & Dyspraxia can be found at the links below.
Sensory Processing Disorder (SPD)
Dyspraxia
Why did this happen? We don't know. As far as we can tell we had none of the typical precursors for this. Healthy pregnancy, normal delivery, full term baby. He was pretty jaundiced, but didn't require the billi-lights.
Will he ever "grow out of it" or be "normal"? I'm not even sure what normal means anymore. Is anybody actually normal?? If you mean will he ever be nuero-typical, as in will his brain re-grow those missing or malformed neurons, then no. SPD and Dyspraxia are life long conditions. There are things we can do to help him and there are "work arounds" we can teach him so that the world will be easier for him, but no he will never be neuro-typical and you know what? That's okay, because he is AMAZING just the way he is and, if you ask me, the world do with a little more amazing.
What do we do now? He'll start OT & first grade in August. He'll also go to see a sensory motor eye doctor since his eyes don't track correctly which is leading to trouble reading (he can sound out words with the best of them, but putting together sentences is difficult when your eyes can't follow the whole sentence). I can only hope that with more knowledge, some intervention, and some prodding on my part that 1st grade will be better for him than Kindergarten was. If not....I'm not sure what we'll do, but we'll figure it out when we get there.
As the proud Mama that I am I have to show them off....here's my determined, amazing kiddos. J in blue, S in "monitor lizard" green.
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| Photo by Meryl Carver at My Bit of Earth. |
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