|Hans (diagnosed with Autism Spectrum Disorder holding||Ethan my son who is deaf-blind)|
There are however, protection issues that I can and do lend my support too. Real protection.
Most of my readers have typical families. With typically developing children. I believe that even those who have friends who have children with special needs, really don't understand the depth of the struggle that some families face. This of course isn't a fault in them. It's much like families who don't have a son that plays football. It might be hard for others to understand the sacrifice that those boys make. They don't know the schedule or when the games are. It's really no different than that, ultimately.
All that being said, there are some really interesting statistics, and facts that I think would be really good for all of us to be aware of. Information that in a case of emergency could have a profound effect in our communities, and especially the families who have members with special needs.
I live in small community. Actually, it is not even a town. I live in an unincorporated part of the county. We have a fire department and first responder team that volunteer their time to help in times of need. They are located right with-in the center of our town. Night and day they respond to calls, running to the scene of all manner of incidents. House fires, car wrecks, farm accidents, everything. I've written before about how the willingness of these volunteers is astounding to me. They train, train and train again in order to hone their talents so they can protect our community to the best of their abilities.
I am wondering however if there is something we can do as a population to help these hard working men and women serve our community armed with more information that could possibly lead to better outcomes.
I've recently come across this story about a boy named Mason Allen Medlam. If you have a moment you really should click on the link and read in depth his story. It is heartbreaking and gut wrenching. I promise if you read it, you'll never be the same. His parents have become pro active in trying to get legislation in order to facilitate information sharing about households with special needs. There is a link on their website that allows someone to electronically sign a petition to help this process along.
The information they are trying to get out there, are special instructions or information regarding a special needs child, and how to let those civil workers best approach these unique children. As well as provide individualized traits and abilities the children might have. A registry of sorts, so that police, fire fighters, searchers might be able to be more effective if armed with some individualized information.
In the state that I live in, you can already do this. If you have information regarding special circumstances in your household you can dial 211, on your phone and discuss them with an operator. You can add your cell phone numbers to your land line information so that if 911 is dialed they have pertinent information regarding your family already on hand. This is linked with your physical address as well. I have no idea how this is working. If it has been successful. I have tried to find evidence based data and evaluated outcomes with this program and I have been unable to do so. I also am not positive how many families know about this service or have utilized it. In these days of HIPPA and privacy laws I am not sure how well this information is accessed or shared. I do think the idea, is fantastic though and has great potential.
|Hans, Victoria, Jay and baby Ethan|
Parents also at times have an overwhelmingly difficult time defining or explaining why their children behave in certain ways. It's frustrating for us when it seems like others do not understand, or in some cases don't "seem" to want too. We tend to feel guilty or responsible. We feel scrutinized. We hear, "If only they would medicate him", or "Why doesn't he just discipline her?", or, "If my child acted like that, I would come unglued". These comments increase our guilt. They make us feel misunderstood, judged and compound our feelings of insecurity and uncertainty.
I'm sure this is not the intent of our friends and family, or those in our community. Its mostly, just miss communication. Or lack completely of communication.
Since this blog is an avenue of awareness, I want this to be a safe place, where we can just put it out there and discuss everything openly without judgments and heartache.
So bear with me, while I delve into a few things that I think we should all be aware of.
Children who have have social emotional challenges, which include diagnoses on the Autisim Spectrum, Angelman Syndrome, Down's Syndrome as well as kids with Developmental Delays, bi-polar and ADHD or even ADD
Some common tendancies are:
- A facination with water. Taps, hoses, lakes, ponds, canals-- anything to do with water
- Over-sensitivity or under-sensitivity to noises
- Inappropriate toy play
- Difficulty dealing with changes in routine
- Inappropriate laughter or crying
- Lack of awareness of danger
- Hyperactivity or passiveness
- Oversensitivity or undersensitivity to touch
- Strange attachments to objects
- Lack of eye contact
- They like to run away or hide
- They have no fear
The one think I would like to express the very most, is that for these kids most of what effects them are NOT a choice. They don't choose to be able to hyper focus, they don't choose to be sensitive to touch, they don't choose to have these issues effect them. There are avenues to help them learn coping skills, there are methods that are being used to help kids (and adults) effectively facilitate management of these symptoms. It's not a lack of parenting, it isn't that these kids are bad, it is that they are truly effected with a physical (brain) ailment and way it comes to the surface or manifests are very visible and often just appear to be unruly, or misbehaving children.
So where does this leave us? Probably with more questions than answers. Should there be a registry where parents who want to, can add their household to a list so that when authorities are called, those that are involved have access to special information regarding the special needs person involved? Should we impress upon our leaders that we want CERT (Community Emergency Response Teams) Teams in our communities? Is this enough?
News reports and media stories are filled with searches and alerts for missing kids with disabilities or aging adults who have wandered away from their families. Hopefully there are good positive outcomes. Sometimes, they are not. In the case of Mason Medlem, the outcome was devastating. We parents and caregivers do the very best we can to prevent anything from happening to our children. Sometimes, no matter what we do, there are incidents.
Lets join together, put our thinking caps on, and come up with suitable ideas that will help our special needs families, the officers and public volunteers that serve them, and our communities, by being aware, informed and perhaps a little more softer hearted towards those who have special needs children in their lives.