Tuesday, November 19, 2013

When is it just to much?

I am always thankful for those who follow our story and support our mission to create awareness. Our goal from the get go was never to get pitty or to make others feel sorry for the cards we were dealt . In fact we hope to inspire and help other families above all. However sometimes our mission gets marred when others take advantage of support blogs/pages. It is sad but there are those out there that unprofessionally diagnose their child, create symptoms for diagnosis's that aren't really there and exaggerate and elaborate on details to get that huge "Oh you poor thing." factor. Those folks tend to put the rest of us in a negative light. 
I never in my wildest dreams thought this journey of my last born would turn the way it has. While our start was a bit rough and a bit scary, again I really thought that would be the end of it. Minus our breathing issues. Autism and all that has come with it was the furthest from my mind. However I can recall one instance sitting in my class in my second semester of college when the thought of Autism came into my mind. A friend of mine, co worker, babysitter, had been talking to me about H and his struggles with speech etc. She had asked about Autism. I said if things didn't improve we would take that route but until then it was just delays due to premature. That was in the winter of 2012. Later that spring is when our lives started to change. Evaluations and testings in its early stages would start to reveal the delays that I was hoping were just in my head would not actually be factual. 
Even with all that we started finding out, our mission was always clear in our head; AWARENESS, AWARENESS, AWARENESS!!! If H actually had Fragile X we wanted to be as informed about it to learn more and start spreading the word on creating awareness. However after two different genetic testings, despite his physical and developmental markers for the disorder, H did not have Fragile X. We still remain apart of the support page as we made some great friends and learned a whole lot about it all. Then we heard the words Autism and Sensory Processing. We went into it with caution and research, we had already been through the stress of one disorder so until we knew without a doubt we kept cautious of what we were dealing with.
Once we we knew what H was dealing with of course our mission was clear. Spread the word, raise awareness and do anything and everything we could to help him. Let me make this clear we didn't/don't want pitty. We want to help him and our other friends we have met along the way be the most successful they can be. I won't embellish details, put things in that aren't there, be deceitful to gain services we wouldn't otherwise qualify for. Sadly we have come across these types of people and it is sad because essentially they are taking away from the other families that aren't able to because the time and therapists are being taken up by those who really don't need it. 
I know as a parent we want to do what ever we can to get our child all the need to succeed however when is enough, enough? When is to much, to much? When is it considered overboard? I have encountered families that have actually lied to get more for their children to create things that aren't really happening to get more out of therapies and out of people. Some would ask "What type of person wants something to be wrong with their child?" " What could one possibly get out all this needy deceitful antics?" At first I am sure they get what they want and then as time goes on hopefully those around them start to see the truth and realize some people are in this for the attention apparently there is some sort of glamour in the disability world. 
I ask those who follow our story to know that what I post is 100% accurate and true. I share the good, the bad, the ugly and of course the unexpected. I try to give a good balance so that the real picture is shown. Autism is not the end of the world, in fact it is the start of a new one for us. Autism has opened our eyes to so many things and in a way we are grateful to this. Its taught us to slow down more and appreciate things we wouldn't have in the past. We have learned to see things in a whole new light.
Autism isn't always this downer and horrible things. There are some wonderful moments we have encountered. I encourage those who follow pages like mine to be leary of those who constantly post the downs, the whoa is me posts, the things that just seem off. There are just some people out there who want some form of attention and its not about their child its about them. Of course most of those who follow support pages like mine aren't familiar about the diagnosis. Utilize that as a time to learn on your own what it is to form more educated thoughts and opinions. Ask questions to the people you follow. You can learn a lot about the people you follow by asking the straight forward direct questions without coming off confrontational and rude. Do this especially if you plan to give monetary donations and such. I would hate to see that someone got scammed. In the past when we have been provided monetary donations we sent proof of purchase to those who donated so they could see it was put to good use then when we were able to show pictures of H utilizing what ever it is we might have purchased with donations. 
I know this is not the typical post I share but after some recent situations and information I have been seeing I feel this is important especially with that holiday season upon us and people are feeling more inclined to give and reach out. Speak up of things seem off. I know that there is a person I have encountered on this journey that has pushed the limits and made others scratch their heads in wonderment. It has really taught me how to read people and situations more so that I can make a more informed decision on who to support and follow ourselves on this journey.