Elliott had his OT evaluation this afternoon. I was expecting them to tell me that he was ok, and didn’t really need any help.
I couldn’t have been more wrong.
As it turns out, they said he has the worst muscle tone they have ever seen. I literally, had to fight back the tears. It felt like I was kicked in the gut.
This also explains why Elliott is so fidgety at school. His muscle tone is so low that he literally has a difficult time keeping himself upright. Apparently, that is why he’s bouncy as well.
How could I have possibly missed this? I don’t know why I ask myself that question, because I already knew the answer. The answer is as unpleasant as it is simple. Elliott fell through the cracks.
I’m so angry with myself for letting him down. No matter how distracted I may have been by the other boys, it’s no excuse.
I tried to get a picture of how bad his wrists are but it didn’t really turn out very well. Basically, Elliott’s wrists bends backwards, the same way it does forwards… You really have to see it to get the full effect.
Does that make sense?
I don’t know why I didn’t notice this before today. It’s so bad that, every other OT and PT in the building had to see it to believe it. It made Elliott feel really special to get all this attention.
They tried to make me feel better by telling me that it wasn’t my fault. With everything else we are dealing with every day, this wouldn’t have been a priority. Especially, with everything going on with Gavin and Emmett’s health.
While I realize that, it honestly, doesn’t make me feel any better. Elliott and I have a very strong connection, more so than the other boys. That stems from almost losing him at birth. He was in the NICU for almost 3 weeks fighting for his life and that forged a very strong bond between Elliott and I.
Gavin’s major health concerns along with Emmett’s and Lizze’s take up most of my time and energy. Elliott, who, until very recently, had no real challenges, fell to the wayside.
That is absolutely unacceptable. I need to do better. I need to push myself a little harder. Elliott deserves as much attention as the other boys get.
I need to figure out how to be what everybody needs.
– Lost and Tired
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Interesting. My 4 year olds hands do the same thing, his fingers also bend really far and he is naturally very good at Yoga. When he was evaluated (and diagnosed) for autism they said his tone and everything was fine (I'll have to double check his report though), but then, they didn't evaluate his speech at all which was my main concern, so I don't know how much I trust that they picked up on everything. He's one of those kids that's very relaxed and very awkward when he runs.
Lizzie's comment above reminded me (how could I forget?) my 4 year old has always LOVED hanging upside down and spends a lot of time on his head.
Don't beat yourself up about it! You know NOW and that is great. You and your wife are amazing parents. Also, my wrists bend back like that too…I thought it was normal. Haha… Anywho, you have not failed ANYONE! You two do a wonderful job. =]
You didn't fail him, Rob, this was just one of those things that happened. I agree with everyone above, so I won't rehash it. Just remember, you can't do *everything*; you're only one person. You're amazing in that you are able to juggle everything that's going on with your family. Maybe it's not to your satisfaction, but if you keep looking at it that way, you'll never be satisfied. Look at all the wonderful things you do for your family. You fight for them against the odds (and I've told you before that I admire that in you). You provide them food, shelter, education, medical care and most importantly, love. You've kept your family *together*. You're doing your best. That doesn't say failure to me, I'd call that success.
Thanks everyone for the support. I know my logic isn\’t rational but it\’s what I felt like. I appreciate all the love and support. Today seems like a better day. Thanks:-)
Rob, honey, I told you that we missed this because ELLIOTT IS ME. Well, the ME I was as a child. When I was his age I was called "spirited" and "strong-willed" and things of that nature. When Mom and Dad couldn't get me to sit still…or keep me from sitting on my head…much like Elliott Richard, they enrolled me in gymnastics, which I excelled at because I was so "flexible" etc. So I'm going to say this again, YOU DID NOT FAIL!!!!!! Neither did I. He will be okay. I promise.
My recent post Are you kidding me?!
Huh. I just learned something about myself because of this post.
I googled "poor muscle tone hypermobility" and came up with an article that explained some of my childhood aches. It turns out that sitting in the W position constantly as a kid (hmm… I've actually never stopped sitting like that. Maybe I should) made my knees hurt occasionally. I think you may find the link informative… http://www.skillsforaction.com/?q=node/4. It's worth a read if you get a few minutes.
I don't know what your son's particular case will turn out to be, but it may be worth realizing that lots of kids are hypermobile and have associated poor muscle tone. I don't know how many have issues with it, but many of us grow up fine. I know I did, and I think I was as bendy as that picture of Elliot's wrist. That's not to say that some physical therapy wouldn't have been useful for me, but my knees aching occasionally wasn't more than a bit annoying, and my mild clumsiness was funnier than it was problematic.
I liked this quote from the link I provided: "The increased flexibility of joints cannot be changed – this is the way the child is built and it is not a limiting factor to improved movement control. After all the grace and flexibility of dancers, gymnasts and acrobats depends on their having hypermobile joints. What can be changed is the strength of the muscles that support the joints. Increasing the muscles' strength also improves the child's sense of the body in space."
My heart hurts for you. I know the feeling of guilt and no matter how much people tell you it's not your fault (which it's not) it never really helps. I think of you and your family daily. Here's hoping tomorrow is better.
You guys are doing the best you can with your constant daily load of stress and worries. He may have slipped through the cracks for a bit, but he'll be on track soon enough now that you all are aware of it.
And hey, at least you aren't discounting it as "all in your head" like my mom does to me. This morning she yelled at me for not wanting to wear certain clothing to school, complaining that I look like a mess etc, and when I tried to say it was the seams she goes 'Bull__ it's all in your head'.
:/ At least you guys know the truth and can work towards helping it.
Thank you for your support and perspective. My wife deals with fibromyalgia as well and that\’s another big one that many think is just in her head.
Thanks for sharing, I really appreciate it.
I deal with migraines a lot from sensory overload, and when people try to tell me that's all in my head I just say "Tell that to my daily migraines when exposed to noise for extended amounts of time. And explain how I'm perfectly happy and fine in my quiet dark bedroom".
That usually makes them be quiet. 🙂
-hugs tight- Good luck you guys, I wish I could give more advice but it's a learning process for me too. And I'm not even a parent, I just deal with autism myself and I'll be going into OT as a career within the next few years. 🙂
As parents, we always tend to blame ourselves when our children have problems. We think it's our fault and if we had just tried harder, things would be different. I understand how you feel, I completely sympathize. But please know, this really is not your fault. You did not do this to him and this did not happen because of lack of attention. This happened because it happened. Some things we just can't control (which sucks, I know). But now you know the problem and now you can work on helping him. You're doing a good job with all your kids. Sleep off the guilt; tomorrow is another day.
My recent post Cracking Up At This! And Yet, So True…
I wish I had words of wisdom to make you feel less like you’ve failed. I don’t, but I can tell you that we’ve ALLLLL been there!! Hang in there – and don’t beat yourself up 🙂
It`s not a failure if you caught it; yes it could have been caught earlier but there are people that are that limber with muscle tone. He`s getting help now.
How many specialists, doctors, teachers has Elliott seen prior to this? point is is that they ALL missed it too and they are the professionals, with the trained eye! Please don’t beat yourself up over this!
You can't be everywhere and be everything and do all things. And you definitely can't do all of that , and do it PERFECTLY. Give yourself a break.
Wow, I’m pretty flexible when on my meds but that wrist photo makes my arm hurt just looking at it. Your kids are all pretty limber though, Gavin’s videos with him doing the pretzel thing make me cringe too lol Don’t beat yourself up, this isn’t the type of thing you’ve been worried about, most parents don’t think of things like muscle tone unless their kids are having trouble with daily tasks.
I hate to see you word it like that. I totally get it. My "normal" son regressed in speech so much it's affecting his grades. I should have stepped in sooner, but my hands are so full w/ my granddaughter's problems (we have custody) and I fretted so much over his autistic brother starting middle school. Still, you have not failed.
My recent post I Know it When I See It
Thank you. I feel your pain. Maybe failed is a strong word but that\’s what it. Feels like to me. 🙂