Practical Tip #51 Friendships

I was able to carve out some time over the weekend and meet up with a friend. Not just any friend. A kindred spirit kind of friend. A person who I met later in life and I was meant to meet. It just took a while for our paths to cross! This kindred spirit is one of those rare treasures we both agree that we will always be friends. In fact, it had been months since we had time to chat. We met for a walk. It was refreshing.

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Prayer Answered – Tristan has moved!

Just amount the time I was going to sit down and share how well Tristan’s move was going…a situation occurred. It looked like perhaps this move was not going to last. Brian and I were a bit surprised and confused (to say the least).


When parents of special needs children need to hand over the daily care of their son or daughter the deepest fear we face is that someone will not want him or her. All these special children have behaviors and quirks that make them unique in extra ways. They are such a blessing, but sometimes we wonder if everyone else can see what we see. Can others look past the behaviors and accept Tristan for who is is? These are deep thoughts, fears, and concerns parents face.


Sometimes parents can wait longer to transfer the care over. Sometimes (like in our situation) that was not possible. It was not a choice we had. However, each family will have to face this decision because none of us are mortal and most of our children will outlive us.


Luckily during this fear of rejection, I had a friend to reach out to. Someone who has been down this road. It is so important in our pain and struggles that we are open and honest with others because of the blessing of encouragement that we can offer one another. The blessing of encouragement that I received was bountiful!

Prayer in Progress…

We have been praying that God would move Tristan to a group home closer to our house. This prayer has been in progress for five years. Tristan became eligible for this move 11 months ago. We have been waiting for a phone call from the State to say a bed is open. In seven days, we received two phone calls for possible placements! We were thrilled to have choices. After some discussions, we decided to move forward with one of the options. Tristan did a trial overnight at a group home 47 minutes away from home!


It was difficult dropping our forever toddler off at a new place. I did not anticipate the transition to be stressful for both the parents and the child. God put the right people in the home. As we entered the group home, Brian and I could sense the caregiver’s love as they serve the special needs population.


Tristan will need to complete another overnight, and then the team will decide if this particular group home is a good fit.


This prayer is still in progress.

Practical Tip #48 It is okay not to know what to do…

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.”

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Prayer Request –Kyrin Carter

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.

Practical Tip #47 Zoom Success

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.

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Photo by Gerd Altmann from Pexels

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.

 

Practical Tip #46- How I Learned American Sign Language to Communicate With My Non-Verbal Son

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.

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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.

When You Pray…

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.

 

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Photo by Aslak Sønderland on Pexels.com

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