As a parent, we fear so many things while raising our children. We understand the underlying risks in most of our daily adventures, but we always think “not us” and we choose to live. We all do our best to teach our children to be safe in a world where bad and dangerous exists; it comes with the parental roles: protect, teach, nurture, love and support.
When your child has a disability or multiple disabilities, the fear grows. A nonvocal and/or nonverbal child, for example, can’t always share needed information to locate a family and they can’t yell “help”. They may not even understand that help is needed. When a child or an adult with a cognitive disability is lost or wanders too far, even if verbal and/or vocal, they may not be able to share needed information and will likely appear anxious from stimming. Stimming is also known as self-stimulating behaviors.
Stimming is defined by the Oxford Dictionary as the repetitive performance of certain physical movements or vocalizations, as a form of behavior by persons with autism or other neurodevelopmental conditions; self-stimulation. This behavior is thought to serve a variety of functions, such as calming and expression of feelings.
Children and adults with special needs, especially with Down syndrome or autism, have a high risk of wandering or elopement. Sometimes referred to as bolting. It is said that wandering is extremely typical in toddlers with Down syndrome, but may continue as they age, particularly if a dual diagnosis exists of both Down syndrome and autism together.
Hudson has been dual diagnosed with both.
Half of children with autism are wanderers, so this is very common. Noise levels can be triggering and the child may try to get away from it. It could be that they see something and they are determined to get closer. It could be that the child is spooked by something like the night sky, this happens to Hudson all the time. No matter the reason, half of the children with autism can easily become lost.
Hudson is a runner, really a bolter, and Hudson is a seeker of water. He is also nonverbal. When a child becomes lost the risk of sever danger is great: drowning, running into a busy street, unable to hydrate, weather elements, and/or possible encounters with strangers or animals. If you live in areas with snakes, that’s a risk, too.
Every second matters.
As Hudson’s mom, it is my job to be as prepared as possible. Our home is safe and we have alarms and locks on every door. Our neighbors know Hudson. I take new photos almost daily. I work with him on swimming, but I’m unsure how he would be without me there. Even with all of these measures in place at home, well, they don’t apply in public spaces or even at friends homes. Daily living and travel have a new level of fear.
Many families use GPS trackers to provide a sense of peace over their runners, but even GPS trackers in shoes won’t work if different shoes or no shoes are worn. Some use bracelets, but kids with sensory issues may not be able to tolerate wearing them. Even rain or a shower can feel like needles on the skin to some.
Recently, Kayla, a 17 year old in Pennsylvania was dropped at school by her special needs bus… and the school was closed due to a smell reported the day before. She was missing for over 8 hours. Kayla even went in convenient stores with no help offered that was seen on surveillance cameras. She was found in downtown Pittsburg in cold temperatures, but she was reported to be okay.
Yesterday, I was sent an article about a 4 year old with autism that went missing on January 12th. Phenix was missing for more than 24 hours. He was found because of over 100 volunteers who wouldn’t stop looking. The public knowing was everything in this search.
I have a friend here locally who has several locks on their doors at home, but her son still gets out and has been found several miles from home. This has happened multiple times. She has locks high up, he gets a chair or a broom handle. She has GPS trackers, but he has to be wearing his belt or shoes. Her constant fear is heavy.
I know a buddy in Jackson that has gotten out of his front door and his fence. He has gone missing several times. Luckily, neighbors know him and have helped. The panic can be heard in his mommas sweet voice.
In Florida, another little buddy got out. Luckily, he ran the opposite direction of the pond and was found 8 houses down in the entry of a strangers home. Mom started swim lessons that week. She threw up for hours after he was found… she ran to the pond first and couldn’t stop thinking the worst.
I have a friend that said she was in the ocean on vacation when she asked about her son… he was a mile down the beach in under 10 minutes time. After they loaded him, he was so frightened that he didn’t talk for hours. See, even a child that can speak, won’t always.
At dinner the other evening, a stranger shared that his best friends son always gets away at Cruising the Coast. He knows several people and always finds a face that can help. What if he didn’t? There are 100,000 faces. However, he loves going and should be able to have fun. It is such a balance, that is why we, all families like mine” weigh the risk-benefit in everything we do.
Sadly, a buddy up north, was found drowned in a pond. He was at his grandfathers house and no alarms told them he went outside. When they realized a back glass door was slimily cracked, they ran to find him. It was a family Christmas gathering a few years ago.
Lastly, I have been on a cruise when a buddy got away from his family. I know the 600 people on board stop vacationing to help… they were Buddy Cruisers. No judgment, just complete understanding and determination to find him quickly. Blasts went out and everyone had this family… he was found safe.
Over and over, this happens often. 70-90% of tragic deaths are caused by drowning when a special needs child wanders away. If you see us out, you’ll often see Hudson in his wheelchair. He can walk really well, but it is for his protection in public places. He doesn’t really walk, he runs. He does not look back to see if you’re with him. He won’t turn to his name being called. He is fast and he loves water. I know I am repeating myself, but it is important that you know many of our loved ones with Down syndrome, autism or are dual diagnosed are very similar the love for water… 70-90%!!!
I share all of this, and I could share 100’s of stories about this, to say that there is something we can do to help families like mine. It is called a “PURPLE Alert”. You know about the “AMBER”, the “SILVER” and even the “BLUE”, now, it’s time to add the “PURPLE”.
Florida already has the “PURPLE Alert” and it is written like this: PURPLE: For adults with mental or cognitive disabilities.
I want to take Mississippi’s “PURPLE Alert” to the next level: As a single alert or can be in combination with “AMBER” or “SILVER”. Ours simply states: “Purple Alert; Establish as additional means to aid search of persons with cognitive disabilities.”
When time matters, information received is everything. Cognitive disablities effect newborns to elders and this alert should be used to provide law enforcement and the public with needed vital information in the quickest manner. Saving our loved ones from the tragic outcomes comes down to time… and not much of it.
What is a cognitive disability? “Cognitive disabilities” is a term that refers to a broad range of conditions that include intellectual disability, autism spectrum disorders, severe, persistent mental illness, brain injury, stroke, and Alzheimer's disease and other dementias.
If Hudson was kidnapped, he takes food by a g-tube, he has daily medications and other life saving measures…. The abductor could not provide what my son needs. In an “AMBER” situation, the “PURPLE” added would be useful information. The same goes for a senior citizen with a cognitive disability… they can be abducted, especially for sexual abuse.
These are all very hard conversations, but a “PURPLE Alert” is easy. It’s not reinventing the wheel, it’s adding a needed color to the wheel to provide information to help if needed. Pennsylvania is trying to get this alert now after what happened to Kayla. We should not wait for something to happen, because it already happens daily, you just don’t know about it.
I have proudly teamed up with Representative Clay Mansell to drop a bill to add this to our alert system here in the great state of Mississippi. I, also, personally asked our governor (during his campaign stop here) to continue to help and support us as we make good needed changes for our friends with disabilities. Mississippi is a wonderful and safe home for ALL, and this simple change will bring some relief for families and it could save lives.
This addition is a beautiful step to protecting our citizens, being a voice for those with no voice and protecting those who cannot understand the dangers out there. EXTRA alerts can provide extra needed peace as we live our lives and do our best. EXTRA alerts will need YOU, should one be issued.
Join me in getting the PURPLE Alert added to our Mississippi Alert System; we can easily add in protections like this to make Mississippi the gold standard for our loved ones and neighbors with cognitive disabilities. Call your local legislators and ask them to say YES! Community has the word “unity” in it, and unity means joined as a whole.