Sensory Concerns – Our Toddler

I’ve been doing a few giveaways and reviews lately, and not much else! I want to keep my site “well-rounded!” 🙂 One of the things I said I would incorporate with the new year was being more personal/personable. I knew that I was going to incorporate Homeschooling, life in general, etc., but there is so much more!

A few things you may already know:

  • We have 3 kids close in age.
  • I refer to my kids by nicknames in public venues (like my website) to protect privacy. Our oldest is 6, and I refer to him as “B.” Our middle child is 4, and I refer to her as “the princess.” Our youngest is 2, and I refer to him as “mooselion.” I know that’s a strange one, but it originated when he was a baby, and we were watching an episode of “Avatar” and Ang says something about sleeping like a baby mooselion. haha http://avatar.wikia.com/wiki/Saber-tooth_moose_lion We’re so full of random “nerdiness” in this house! LOL
  • I homeschool the kids. B is only in Kindergarten, but I do preschool work with the princess, and the mooselion just kind of bothers everybody the whole time! ha!
  • I think my kids are awesome, and although parenting can be challenging at times I learn a lot from it (and them) and they motivate me to not only be a better mom, but a better person!

Some things you may not know:

  • All 3 kids have Special Needs.
  1. B has PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified – also known as “atypical Autism”) He started Speech Therapy before he even turned 2 and progressed into group-based therapy and has really come a LONG way. He’s high functioning and is doing great! (I’ll go into details another time)
  2. The princess is currently waiting evaluation for Sensory Processing Disorder with Developmental Pediatrics. As of now we don’t have that definitive diagnosis, but it is clear that there is SOMETHING “different.” (Again, details will come another time.)
  3. Mooselion has a major speech delay. He just turned 2 and his speech is at a 15 month level – maybe a little lower. We just started the process through Early Childhood Intervention, and they have also noticed (as have I) that he also has sensory concerns. Again, we have no definitive diagnosis of Sensory Processing Disorder, but it has already been recommended that we seek Occupational Therapy for his sensory concerns. This particular blog is about him!

Mooselion actually sleeping - with his puppy

Mooselion

He just celebrated his 2nd birthday on April 26th. He is a very rambunctious, rough little boy. He is very attached to his momma! I definitely took the attachment parenting approach with him, but I think even if I hadn’t I would have been forced to! He has such a STRONG personality! He’s a cloth diapered cutie and still nurses 2-3 times per day and once or twice at night. Yes, at age 2 he has NEVER slept through the night. I think once or twice he slept a 6 hour stretch, which was amazingly refreshing, but definitely not the “norm,” and it was sporadic and surely didn’t last! At first, I thought it was the direct result of my husband’s illness. When his cancer had come back mooselion was only 4 months old, so he was constantly in the car, at the hospital with me, and didn’t get much “daddy time” because the chemo made my husband so ill. I thought, for sure, once everything started getting “back to normal” again his sleep issues, neediness, etc. would also level out. That was just never the case. He remained very clingy, needy, etc. and still had extreme sleep issues – including naps.

A majority of those on the Autism spectrum (B included) have Sensory issues, but it wasn’t until fairly recently that I became more aware of the fact that there are those that aren’t on the Autism spectrum that have the sensory issues. Sensory Processing Disorder (formerly known as Sensory Integration Disorder). I am learning more about it now as we are learning that both the princess and Mooselion have sensory concerns – as well as Mooselion’s speech delay (which generally goes hand in hand with SPD). The more I learn about it, the more all of these “issues” I thought were going to resolve as things settled started making sense – and I know that I need to be as proactive with getting him (and the princess) help as we were with B! It’s easy to listen to well-meaning friends and family that say “he’s just a boy,” “he’ll grow out of it,” “it’s just his personality,” etc. It’s hard to just brush those thoughts off, but if I learned ANYTHING with going through this with B it’s that I HAVE to listen to my instincts! We heard all the same things then, too! I’m glad I didn’t listen because I cannot tell you how much the intervention has helped, and I don’t even want to imagine how things would be if we hadn’t gotten intervention early like that! Another thing is I’ve had to learn to ignore unsolicited advice. Yes, I post my frustrations on my Facebook page, no, I don’t want advice that works for children without special needs. Even children without special needs are different, so I believe advice should be given loosely as-is! I can’t say I’ve never been guilty of this, though, because I do think it’s just our instinct! Sometimes, though, we just need to vent! I have tried EVERYTHING in the book for his sleep concerns. I’ll admit I even tried things that were in direct contradiction to what I believed! I don’t know if it was to “prove it wouldn’t work” or just because I became so desperate, but the truth is now I regret ever having tried it. Letting him cry, for example, makes him ill. He will vomit. No, it’s not because he’s stubborn, manipulative, etc. It’s because he has sensory concerns that well-meaning friends and family (and I) didn’t quite understand! I’m STILL learning, but what I know now is those times were absolute TORTURE for him, and I will listen to my instincts more often!

So what are Mooselion’s Sensory Concerns and how do they affect him (and us)? I have found a lot of helpful information at this Sensory Processing Disorder website including the Infant and Toddler checklist. Just like anything – we are not doctors and are not qualified to make a diagnosis of SPD. Whether he has SPD or not there is NO doubt he has some of these sensory concerns that are directly related to the issues I’ve described. He has already been recommended to Occupational Therapy for help as well. I wanted to share a little of the sensory concerns that Mooselion has. Just like Autism has a spectrum, SPD has one as well. In fact, the princess’s sensory concerns are almost the exact opposite of the Mooselion’s, though some are exactly the same, which is what made me start looking more into it!

Some of the concerns experienced by Mooselion are:

  • Resists being held or cuddled. Those that know how often he WANTS to be held may find this hard to believe, but the truth is it has to be “just right,” and it has to be someone he’s comfortable with. When he goes into sensory overload, though, even I can’t hold him without being kicked while he screams and thrashes around or slams his head into me.
  • Distressed by diaper changes. He still cries with diaper changes sometimes – particularly if we have to use wipes. At one point I was convinced our neighbors were going to wonder why in the world my baby is screaming all the time!
  • Distressed by baths and/or water splashing on him. He has a love/hate relationship with baths. He either touches the water and starts to scream or he touches the water and gets really giddy and excited. Some of it depends on the temperature of the water. It has to be “just right.” Some of it, well, I really don’t know. I’ll have everything “right,” and he still screams. On the days he enjoys his baths he enjoys them until a drop of water touches his face or ears, and then he must get out immediately.
  • Doesn’t fall into a predictable sleep/wake pattern or cycle. I think I commented much already on this subject! haha
  • Cries excessively throughout the day (more than a half hour or hour at a time). This has gotten better now that he can communicate some. Since he does have a significant speech delay, though, this is still a big form of communication for him. Although, I wouldn’t say he still “cries” excessively (though he did as an infant for sure) he does still fuss and whine excessively no matter what we do to try to make him happy.
  • Distressed when moved suddenly or whole body and/or head is tipped. If he is aware that this is going to happen he actually loves it, but surprise movements, etc. are VERY distressing for him. His “startle reflex” is still extremely strong. He slept swaddled until he was almost one because of this.
  • Can’t seem to calm baby down no matter what you try (or there is only ONE thing that does, i.e., a car ride). For him, there is NO thing that will calm him down when he’s distressed.
  • Gags or vomits from textured foods or on variety of different foods (very limited diet for age). I wouldn’t consider his diet too limited, and he does TRY a variety of foods, so I know we are very blessed in that regard. He does gag easily on his foods or will spit them out, though. If I’m careful to pick smaller pieces and smoother textures we generally don’t have any other problems.
  • Prefers to be without clothing.
  • Severe separation anxiety. This has gotten much better, though, so I’m praying it continues to improve!
  • Tantrums many times a day.
  • Distressed in public places, especially if crowded or noisy. We rarely go to restaurants or stores with all 3 kids – particularly him. When there are many people around it almost seems as if he feels so “lost” in his environment he’ll try to do anything to “control” it. It’s overwhelming for him AND us!
  • Keeps hands fisted and closed most of the time. He almost always is holding a toy in each hand – almost all day. The toys may change, but he always has to have a grip on something – in BOTH hands.
  • Appears overwhelmed, cries, or falls asleep when over stimulated. I call it his “meltdown” because that’s the best way to describe what happens when he gets overstimulated.
  • You find you are always trying to be one step ahead of baby; trying to control his environment and “warning” people what to do/not to do so baby is comfortable.
  • Difficulty staying asleep for more than 30 minutes at a time, or wakes up frequently throughout the night, unable to soothe himself back to sleep. (Again, with the sleep issues.)
  • Has significant difficulty waking up. He rarely “wakes up happy.” Today was a good example. He napped for an hour (a significant nap for him) but still sat and cried for a while before he even got out of bed. He couldn’t calm himself back down, so I had to help him calm down.
  • Needs a particular sound to stay asleep, i.e., fan, nature tape, white noise, music, etc. Unfortunately, he doesn’t STAY asleep, but it DOES help!
  • Needs excessive help to fall asleep…rocking, bouncing, singing, rubbing back, etc. for long periods of time. If he didn’t still nurse I cringe to think what we’d have to go through to get him to sleep! Even nursing isn’t an instant process for him, but it definitely helps him fall asleep more than anything else!
  • Uncomfortable if not swaddled tightly; or, if older, needs heavy blankets, stuffed animals, or tighter pajamas for weight and pressure on them to fall asleep well. This one, though, we’re not 100% sure about because he’s obviously not swaddled anymore. As I said, we stopped just before age 1, but I remember what a significant difference it made, and it has been suggested that we try a weighted blanket, which I’m considering making one myself!
  • Craves movement, distressed if not moving, being swung, rocking, bouncing, rocks self constantly. This is one of Mooselion’s most notable sensory concerns – the sensory seeking. When he’s upset the few things that do soothe him are bouncing him, tossing him, rocking him vigorously, swinging him quickly, etc. We’re currently working on ways to help him do things on his own that aren’t harmful (like his jumping off the couch, kicking his legs out from underneath him so his bottom hits the hard floor, slamming his head into objects, etc.). We got the boys a small trampoline for their birthdays, so I hope it helps!!
  • Frequent head banging, hitting, biting, pinching, or hurting self or others. He is very rough to where you can tell he doesn’t even realize it – like he can’t even control it. Just a couple of hours ago, actually, I had to remove him from the Princess’s room because he was in there playing with her and bit her so hard she had visible teeth marks in her arm. (She also has issues sleeping, so he often sneaks in her room to play since she is awake as well!)
  • Appears uncoordinated, frequently bumps into things.

This is just a look into some of the sensory concerns Mooselion has. Again, even children with known sensory issues don’t always have THE SAME ones. I’ve decided that’s why it’s important to share so people can understand the child they’re trying to give suggestions about or trying to learn more about. I feel it also helps other parents of Special Needs Children to feel like they have others to whom they can relate. I think it also raises awareness for these “invisible disabilities.” I know before I became a mom I was TOTALLY guilty of seeing a child acting out in a store or restaurant and rolling my eyes because surely it was “bad parenting.” Wow, do I hope I didn’t actually give the looks that I’m used to getting even though that’s what I was thinking! The truth is you don’t know if that child may have one of the “invisible disabilities,” so although it’s easy to think the child is misbehaving, has a bad attitude, is unruly, or that their behavior is a result of “bad parenting” take a minute to consider that child’s behavior could be the direct result of feeling overwhelmed by the environment and they have no other way to express it!

Another reason I want to share more about my special needs children? Because I want to let you know that you don’t have to feel alone or limit yourself. Yes, there are things I’d like to do but can’t sometimes or have to cancel plans because one of the kids is just having a REALLY bad day, or maybe move a little more slowly in my businesses or a project, but it doesn’t mean we can’t live a satisfying life or be successful in business, homeschooling, or whatever your desire may be! Don’t let it hold you back, use it as motivation to move you forward! God knew what He was doing when he blessed us with our unique children, and whether you have special needs kids, kids without special needs, fur kids, or no kids, we can all learn something from each other!





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