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.
As a mom of a special needs child that is 3 hours away I often wonder how do I stay connected to my son? This challenge has been amplified with the global pandemic and social distancing measures in place. The city he resides in has been a hot spot for Covid-19 for some time now. Thankfully, the organization that is caring for him called to shelter in place sooner than later. However, this means our world has been turned upside down. No weekend home visits.
The main challenge is not to upset my son while still remaining a part of his world. After several weeks of no visits I decided to try an experiment. I wanted to see if a video chat would be possible. Obviously a video chat with a nonverbal child is much much different. It was time to test the waters. I decided to empower an Uncle to the task. I called Uncle Mike and asked if he would try a Zoom meeting with Tristan. He agreed and even suggested I watch without Tristan knowing I can see him. Mike coordinated the call with his group home manager.
Tristan got on the Zoom meeting with Uncle Mike while I watched. Tristan giggled and was very happy. He was thrilled to have a “meeting” with Uncle Mike. Uncle Mike chatted for a few minutes and then ended the call. I waited a few hours to see if Tristan’s behaviors increased by checking in with his group home manager. Tristan was fine. It was a success!
The next week we were able to do a Zoom call as a family. It went fantastic. Tristan was excited to see us. He stayed on the call for 2 minutes. Then he said “bye.” Short and sweet.
I am grateful we are equipped with technology during this time.
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.
What a week it has been for all. As we lengthen our prayers list, could I ask for one? I received a heart-wrenching email from Tristan’s school. He lives 3 hours away. If feels like I sent my giant toddler off to college. The email sent said home visitation would be postponed for two weeks then re-evaluated due to Covid-19. School is canceled. Community outings are canceled.
Parenting is hard work. Adding an element of any disability in parenting poses extra challenges. In addition, there are also extra blessings. One of them is the life lessons that unfold before your eyes. I encountered one of these “life lessons” the other day.
When Tristan was very young I use to keep him in arms reach in an effort to keep him engaged with people. He would help me around the house. I later realized it benefited him in many other ways. (following directions, completing tasks, feeling accomplished, etc.) I observed over time that he thoroughly enjoys doing “chores.” He is the one person I know that does not dread completing them.
The other month I invited him to help me wash the dishes. I told him he could rinse them. He LOVED it! He was smiling ear to ear. He thought it was “water play” not work. We completed an activity together. I have pondered on his joy and how contagious it was.
Thank you, Tristan, for the life lesson on joy!
It can be a challenge to stay engaged with my son when he has limited interests and prefers to be alone. However, I have found if I take the time to study what captures his attention, then I can enter his world.
When my boys were very young, someone gave our family an inside swing. Both my boys loved it. It was great for rainy and snowy days when the kids couldn’t go outside to play. We used this item for years.
I bought some colorful cookie dough through a fundraiser. It almost looked like playdough. I thought Tristan might find this interesting. When the order came in I went off to the store to purchase some new cookie cutters.
I am thankful for all the people that have come alongside our family over the years because of Tristan. The list is too long to individually list names. Therefore, I am going to list categories: