Book Review – #1 Recommendation

For some, autism is a new topic. When Tristan was in therapy, and the diagnosis was not concluded, I read every book I could find at the library on this topic. There were many books. I am still determining how I found the time to read, except being at home full-time required me to keep my brain fresh by soaking in reading whenever possible. I would have reading material nearby if he was in the bathtub or sandbox.

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Practical Tip #53 – Offer Choices

It was pointed out to me by a case worker to offer Tristan choices throughout his day. Raising a forever toddler/preschool level made me pause and realize how many decisions we make for him.

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Practical Tip #52 – Go on a Hayride

As I look back on the years with the blessing of Tristan, I am amazed that the amount of our particpation in family activities has increased! Honestly, for a long time, the list was short. Church, McDonald’s, parks, and two hours at a family gathering. That was all we could muster the energy to do outside our home. Our home was our sanctuary to manage Tristan.

Practical Tip #52 — Visit a Local Farm

I can not say enough good things about our experience at Thistleberry Farm! It can be safe to visit the same places annually. However, as Tristan has gotten older, we have ventured out to try more places. I am glad we did because there were so many “Tristan-friendly activities!” He had a full day. We are blessed to watch him enjoy different experiences. Thistleberry Farm is located in South Bend, Indiana. This gem of a place was very close to our home. Somehow we have missed this opportunity for years!!! I encourage you to look for places close to home. Enjoy a few pictures from our family outing.

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 #49 — 60 Minutes at a Children’s Museum

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.

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.”

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.

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.

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.