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
UPDATE: Kyrin Carter has been found. Not the update any parent wants to hear. He was found in water. Please pray for the family.
Please pray that this 12-year boy, Kyrin Carter, is found safe. He wandered away from the hotel room where his family is staying. This is the last image of him. He is non-verbal. I can tell you from my experience of raising my son, Tristan, elopement is a problematic behavior to manage. Parents are always on edge. It is a constant 24/7 job. When I look at this picture, I see my son! No shoes. Tristan would elope and not think twice about wearing shoes. When Tristan would run out of the house, I would be right behind him. He would never answer to his name. I can imagine responders calling Kyrin’s name, and he might have the same response. Tristan could never say, “Mom, I am right over here.” Please pray for the entire family. I can not imagine the heartache they are dealing with. I will update you when I know anything.
American Sign Language was the “hook” in getting Tristan to say more words. I knew from the beginning of parenting my son, Tristan, that communication was going to be crucial in managing his behaviors. I was not always sure how this was going to happen. It was evident that his behavior of eloping out the doors would be better managed if he could tell me his wants or needs. Speech therapy was only going so far. I had one person suggest sign language. In a very brief conversation, this person suggested I check out the library for Signing Time videos.
I figured I had nothing to lose. At first, I watched the videos with Tristan. He seemed somewhat interested but it turned out I was doing more of the learning and watching than him! Then I taught him. He was a sign language sponge. He soaked up all the words I introduced to him. He was about 3 when our journey with Rachel, Leah, Alex, and Hopkins began. These are the cast that make up these videos. I was so inspired by this family! In their challenging parenting journey they took their precious time to invest into other families. Rachel’s first daughter,Leah, was born deaf. Their second daughter, Lucy, was born with other disabilities. I realized they might not have time to create such a beautiful product–but they did. Tristan got the benefit of being able to communicate.
I watched every video I could check out from the library. Thankfully, there was a large selection. Then I had a behavior specialist share if I could increase Tristan’s vocabulary to 300 words he would likely talk. Then I bought sign language books. I tried my best to teach him a larger vocabulary. Somewhere after 300 words I lost count. He began combining words. He did say a few sentences. That is as far as we got. I count this as a success. Behaviors did decrease. We made progress.
Sometimes he would sign a word and I could not remember what it was. I would have to think of the context clues. Luckily most of the time I would recall what the word was. ‘
There are also American Sign Language on-line dictionaries to look up words. This was helpful too. I really just learned one word at a time and continued practicing it like learning any new language.
I would suggest the following signs to begin with: eat, hungry, thirsty, mom, dad, help, tired, cookie, drink.
I would highly recommend checking out Signingtime.com for a way to view the products digitally. In addition, check out YouTube!
I know interpreters spend many years learning this skill. I do not want to underestimate their gifting. I am in no way an expert in sign language. However for the purpose of having communication of wants and needs I was able to learn and teach Tristan. I can not communicate conversationally with ASL. I know enough that I can communicate with my son which is greatly beneficial.
I was very surprised one of my post generated so many views. It was titled “100 Days of Grace.” It was a very emotional post about our family crisis with autism.
I could just resume the same post. I can’t believe it has been three years since transitioning our non-verbal 13-year-old son to a residential school three hours away. That means he is now 16!
For an outdoor sensory activity try a bubble machine! As you can see from the picture our son loves it! This activity can be a little messy, but it’s all clean fun!
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!
There are 100 days between Memorial Day and Labor Day.
Our journey with autism took a stark turn of events during these past 100 days. With each day passing we all relied on God’s grace. Let me share what that looked like in our family.
On Friday, Brian and I toured the residential facility. When we got back in the car, I knew sometime that day we needed to make a decision. We had 20 minutes to give an answer. Continue reading
As we face a swift decision on where Tristan should live, there is fear of making the wrong decision.
Last week, we went to the ER for the third time in 3 months. They were encouraging our spirits as we were taking care of our little guy-Tristan. They were watching us handle Tristan as he was miserable from medication that was intended to help him. These are some thoughts I had.