This week was one of those weeks that I attended Tristan’s IEP (Individualized Education Plan) meeting. I was not quite prepared for the outcome of this meeting.Continue reading
For as long as I can remember, Tristan has always been curious and likes to touch everything. One of our favorite places to take Tristan is a Hand’s On Museum called Curious Kids’ Museum in St. Joseph, Michigan.Continue reading
I still remember like it was a few days ago when Brian and I attended a church event related to incorporating special needs families into churches. There was a panel of special needs parents with an audience to ask questions. We were in the audience, but we lived this scenario as a special needs family attending church. One person asked, “If we take care of this population, we may not know what to do.” I remember leaning over to Brian and saying, “There are a lot of days we do not know what to do, and we are the parents!” He agreed and said, “Yes.”Continue reading
Ever wonder if all the work you do on creating routines ever matters? I know I do.
Parenting books, articles, and videos all say kids like and need routines. When you add autism to the mix of parenting, the everyday routine’s are essential.
Our Tristan is very curious and loves to touch everything. It is just where he is at developmentally.
We have found that hands-on museums are a Tristan family-friendly activity.
We took a trip to the Curious Kids’ Museum in St. Joesph, Michigan.
When we entered the museum, I said to Tristan, “At this place, you can touch everything.”
At the physical disability awareness station, Tristan thought it was a fun game to sit in the wheelchair and circle the ramps.
The giant Lite-Brite station was a huge hit because he was gifted with one this past Christmas. He understood the activity. Tristan loves when items are larger or smaller than the usual size.
We played hard for about 90 minutes and then it was time to exit.
It was a great family day!
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 the world-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.
Keep calm and let God’s grace carry you!
This is very important, yet easier said than done.