This Indiana winter has been dangerous! It seems like every few days there has been ice or freezing rain. Soon…spring will arrive.
The other weekend I offered to take Tristan back to his school. It’s a long haul from our home to his residential school. The previous day was sunny. I thought I would enjoy a long drive. We had a break in the weather and it wasn’t too snowy or icy when I offered.
Then 20 minutes before I left the snow started to fall. Since I would be driving south away from the lake effect, I thought it would be no big deal. Wrong!!! The first 30 minutes of the drive were slow going. The snow was coming down! This went on for another 90 minutes of the drive. I saw several cars in ditches and accidents. As I continued driving I counted more and more cars in ditches. I stopped counting at 20. I prayed that we would make it safe. Then the thoughts of worry washed over my mind. What if we got into a car accident and I was unconscious? Tristan would be helpless.
We arrived to his group home safe.
I arrived back home safe.
But I couldn’t shake the thought of the what if’s. I knew I needed to do something,
I was very excited to find these seat belt covers. After reviewing and researching on this topic this is what I discovered. It is the most helpful for EMT’s to know the name, date of birth, and illness.
There are many different kinds on the internet to order. I liked this on etsy.com by HenryDarling, because it looks like Tristan won’t be able to take it apart. Also it displays his name. I think it would be helpful in an emergency for someone to be able to say his name and get his attention. For the diagnosis being displayed, there will be no guessing what disability Tristan has.
I was thinking…with his name being displayed, we will be able to train him to always sit in the back seat with his name tag! He will probably think this is some kind of new game.
I ordered mine today and I will have peace of mind during an emergency that Tristan will be taken care of. If you know of anyone with a special needs child consider gifting them with one.
I think it is important to shed some light on the myths and lies that exist around issues of autism. Especially when the autism population is growing or more people are being diagnosed. (That is a topic to discuss another time.)
The myth is that there are programs for everything and for everyone who has autism. The hard truth is there is not a plethora of resources to tap into! When families are faced with a crisis due to autism there is even less.
Let me explain and give some details.
Two years ago my husband and I looked at each other and asked ourselves, “Are we the first family in the state of Indiana to have a 13-year-old non-verbal autistic child with severe behaviors?” I know we aren’t but it felt this way. And sometimes it still does. We have been denied programs and other avenues of help due to:
his age-too young or too old, his cognitive level, he is non-verbal, he lives at home(before he left our home), he is not a ward of the state, etc.
There will be Tsunami of children and young adults that will need care for their entire life. The State of Indiana needs to do better.
There needs to be:
Day Programs during the summer months (No Public Schools do not provide summer school.)
Inpatient Acute Hospitals
Group homes in counties all over the state for elementary, middle-school, and high-schoolers with developmental needs beyond a family’s ability to handle. Believe it or not there are families with very young children who need this type of program.
I’m not really a fan of the government over seeing this. However, the need is so vast that anything at this point would be helpful. Ideally communities would come together and start something. A few parents have and I don’t really know how they muster the energy. At the end of the day most of us parenting special needs children are purely exhausted from the normal activities of living.
Hopefully, my story will compel you the reader jump into action. It’s not enough for the community to be aware of autism. It is important to be active in the special needs community. I understand the average person is not immersed in the special need culture to know how to help. That’s okay. Ride along with me in this journey of life I will share from my heart and hopefully spur you to help make a difference!
As I contemplated writing I didn’t know where to re-start. I know it has been awhile since I have posted. I stopped writing because I needed to step back and process life quietly.
As I read my last post “100 Days of Grace,” I could just linger on the last title and the theme of grace for my life. Only at this point I am well past 100 days or even 365 days. Days have turned to months, months turned into a year, and a year has turned into years. I am learning to let go. I am learning to live in God’s grace everyday. Internally I am fighting against the new “normal” of only being a hands-on parent on a bi-monthly basis. To deal with this, I have realized my new role is to continue being Tristan’s biggest advocate in a different way. I ask the ones who are caring for him detailed questions on how he is doing. I respond with suggestions and let go. Really let go.
Two years ago our family was in a crisis. I searched for posts on residential placements of a 13 year-olds and I found 1 article. If I remember correctly it wasn’t even someone in the US. I realized I need to write.
I have a story to tell. It is not the story I want to have. It is not a fairy-tale ending of my parenting journey. But honestly, no one gets to pick out how life unfolds. If it wasn’t for 2 kind ladies reaching out and sharing their experience, then I would feel even more alone. Along the way, God put 2 more people in my path in unexpected ways. Both of these people have very similar stories to ours. I want there to be more than 1 article on theworld-wide web that address these hard topics of parenting autism kids. I know there are others living this same situation but not many have spoken. Therefore, some of my future posts on this site will be about this topic to hopefully give other’s information and hope.
God’s grace is carrying me everyday. I pray that God’s grace will carry you– whatever journey of life that you are on.