Cram all of those lists of do's and do not's!

In this day and age, social media really plays into the hypersensitivity of others. Someone is always offended over 1 thing or another. The world of special needs is no exception.
I belong to many groups and like pages, and not a day goes by where I dont see a blog or article posted regarding what to do or dont do or say or dont say to a special needs parent or child.
News flash! The world is not going to walk on egg shells or tip toe around a possibility of a hurt feeling.
This may sound harsh, and I have had some really down right rude things said to me about my daughter, including her being called a "fucking retard", yes that is offensive! Yes that more than warrants being upset. However, there are many well meaning people in the world that really truly do mean well, and to be offended over that and whining about it over the internet is getting old and tired.
Yes there are legit "well-meaners", that despite how much you advocate and educate, can still say some hurtful things. I have had that happen too. But ask yourself, do they really mean to be hurtful? Definitely not! More often or not, well meaning suggestions and comments come from people that truly do not understand your child's diagnosis no matter how much you explain it. Hell, I have been on this journey with Jaylyn for almost 2 years, and there are still things I do not understand, and Im a special needs peds nurse! Every day is a learning experience. I have even been floored by comments from my peers and fellow medical professionals. I have had E.R. docs that reviewed Jaylyn's diagnoses before examining her walk in and say "wow, I was expecting her to be a vegetable!". Yes, we are just as amazed at her progress despite what she has been through! (See what I did there? Turned a possibly offensive negative into a positive😉)
Its comments like these where I feel I am given a choice to be offended or not. Sure, it took me by surprise, but if I take a minute to reflect on the positive meaning, is it really offensive? NO! I am very proud of the fact that with all of our hard work and determination, Jaylyn is doing so fanfreakintastic, that she shocks and amazes doctors!
Then there are the more common cliche comments people often make, and there are hundreds if not thousands of blogs that reference them as being offensive. "God only gives special children to special people", "she looks normal", "at least she doesnt have________(insert worse problem here)". Sure, I can see how this is offensive if I am always on the defensive, but consider the source and true meaning from the individual who is saying it. Do they truly understand? Do they really know what to say? Are they meaning to offer words of comfort? Are they in amazement because of the diagnosis versus your child's outward appearance?
So I am proposing a challenge to my fellow bloggers! For your next blog, take the absolute most offensive hurtful things people have said to you, and turn them into a positive. From 1 special needs parent to another, I too feel as though people do not understand what I am going through. NEWS FLASH, most never will. We always want people to "see from our side", "walk in our shoes", "live a day of our lives", so lets show those "well meaners" the same respect!

When "well meaning" words hurt

There is a very good reason I raise awareness and encourage my friends and family to learn about Jaylyn's diagnoses. Those reasons include avoiding conflict, better understanding of Jaylyn, and selfishly, to spare me some anticipated pain when those "well meaning" comments come out of someones mouth. Its almost unavoidable and mostly expected from strangers who may not know or understand. But for those that do know, or at least have some idea of what we go through on a daily basis, its downright painful. Between updating family on social media, running an awareness page and sharing Jaylyn's progress, I would hope to be spared at least some pain. Yet it still seems as though some have no idea whatsoever. Or perhaps, they dont want to know. I sometimes wish I didnt. The grasp on reality, my medical background, and thirst for answers is a blessing and a curse. I do share quite a bit, however, every single detail of our lives is not broadcast on social media, and even if it were, I still think it would be hard for anyone to have a really good understanding of what we go through and grasp why I grieve. There are so many things that people complain about their children doing, that I yearn to see Jaylyn do. I wont say that Im envious, or that they even take those things for granted, because I raised 2 typical children and had those same complaints at one time as well. But I would love to hear Jaylyn say, well, anything really! I would love to walk in from work and have her run up to me, wrap both her arms around me, and her tell me that she loves and misses me. But due to her diagnoses, that is never going to happen and I have to love whats missing. I am pleased with her progress, although we have had some recent set backs. Her recent grasp on sign language is encouraging and we will be working on a picture exchange system as well. I dont just write these blogs, make awareness videos and run an awareness page for me. I do this for those that want to know Jaylyn. Want to understand her diagnoses, and perhaps maybe even understand where Im coming from and why I get upset with "well meaning" comments about her running around or talking my ear off. She is classified as NON VERBAL and NON AMBULATORY. Which means she cannot talk or walk. Will she? Not in the way you or I do. Not like a typical child. Her PT has even made a recommendation for an adaptive "stroller" aka a wheelchair. So when I am outside working with her and I look at you like I want to punch you in the face for making jokes about Jaylyn running around, perhaps you understand why.

Dear Devon, Love Jaylyn

Dear Devon,
If I could speak, I would have so much to say! But that does not mean that my expressions and vocalizations do not mean something too. You are an amazing big brother. And I know that it was somewhat easier being a big brother to a typical sibling than it is being a big brother to me.

From the beginning, you were so helpful and caring. Taking care of mommy, and you have been there for me since the fetus!  I am definitely not what everyone expected and I know it must be frustrating trying to figure out what I want,while still trying to accept that I am not a typical child. I am special needs, and I will need care for the rest of my life. Youre definitely not alone in that because sometimes mommy and daddy have a tough time of it too! But please be patient. I cannot help the way that I am, and its just as frustrating for me when I cant communicate my wants and needs as it is for you.

So out of frustration,  when I throw myself back, understand that its not because I want to hurt you. I am trying to be heard and do not know how (Mommy knows someone that was sorta the same when he was little). I know at 15 months old, I should be doing a lot more than I can do, especially feeding myself and holding a bottle. It must be so exhausting having to do something for me all the time that I should already know how to do. Nothing I do is out of malace. The amazing thing about special needs children is that we are so pure of heart and mind, we would never hurt anyone on purpose.

I know you were expecting a little sister that would be running behind you and getting into things by now. Babbling your name and being more interactive.  Instead, I have to be carried everywhere.  Again, imagine how frustrating it is for me! I want to go. I want to walk, and I want to talk! And I can see it in your eyes and hear it in your voice when you are having a hard time understanding MY way of communicating. Sometimes it makes me cry because all I want is for you to understand me.

Understand that because my brain does not communicate with my body that my limbs do not work right, so dressing me does take time and patience. Do not get upset when my legs involuntarily cross. Take your time and listen to mommy on how to do it. I do appreciate it and mommy sure can use a break too! Besides, I love our bonding time! I love the way you make me laugh and smile! And let me play with your hats!

I know that if I were a typical child, it would be easier on everyone and mommy wouldnt have to rely so much on you to help take care of me. Im sure you would rather be hanging out with friends than going to the umpteenth doctor's appointment or having to do extra chores because I was such a handful mommy didnt get a chance to even sleep, let alone get anything done.

You are one of the most important people in my life! I love you so much! I know I cant say it with words yet or if I will ever be able to, but look into my eyes! Look at my facial expressions,  and pay attention to my body language. I know that you have overcome your own difficulties which is why I think we have such a close bond. So please be patient. Please understand,  and most of all, please stay awesome!

So we had a busy weekend

Cruising and pulling to stand!: http://youtu.be/SnAIwuznQ7o

Epilepsy awareness month

Check out @devsamjt's Tweet: https://twitter.com/devsamjt/status/528978418021720065?s=09