Counting Blessings

Happy Holidays!

With Thanksgiving square in my rearview mirror and all the bliss of Christmas right around the corner, it seems perfect timing to give thanks to God for our many blessings.

I know how easy it can be to focus on the tasks and the strategy in our quest to help our kids improve, quite simply it can be overwhelming. Doctors appointments, supplements, possible medication, therapy, school, diet and tracking behavior is a lot! And that doesn’t include parenting and rigid routines. It is easy to miss the gains and blessings.

It may sound odd to many of you, but in many respects Lindsey’s diagnosis of Autism has changed my life for the better. No, I am not happy she is Autistic nor will I ever settle for her being anything less than 100% of her potential- but her diagnosis has taught me perspective, it has taught me patience and it has taught me how to lean on God. I’ve always been a Christian and had a “society standard” church attendance, mainly Easter and Christmas with a few other services sprinkled in, but shortly after a life changing diagnosis of Autism, I grew up.

I needed to dig deep, really find out what kind of mom I was. Up until Lindsey’s diagnosis parenting had been pretty easy. Now it was all going to change, I needed to learn more and understand medical ideas that were foreign to me. I needed to comprehend biology concepts that could help unlock my daughters mind and I needed to do it yesterday. The information came to me through a stream of experienced moms, in retrospect they were intentionally placed in my life by God at the exact moment I was open to hearing their story.

He showed me paths to follow, and they made a difference. He then made it easy to attend church, having it staffed with incredible women that looked forward to watching Lindsey every Sunday. My daughter was and is a Rockstar at church, everyone knew her and would greet her with smiles and hugs- even on the more difficult days. I was in such awe of her relationship with these ladies that I didn’t want to let anyone down with her missing many Sundays. Therefore, I didn’t miss many either!

Next thing I know 5 years have passed, we attend every Sunday and my relationship with God exploded. It's been a hard road and not every decision has come easy. There are many days that I question what's best, whats next and where to go from here. I know I will search and even struggle from time to time but all I can think is what if I was still living that “cruise control” parenting I did early on? Would I be as informed or engaged? Would I appreciate every conversation and new interest? Would I have been baptized again as an adult? I really don’t know. What I do know is that God works in mysterious ways and my family is stronger, my daughter has improved hand over fist for years and our faith has never been better.

When Lindsey and I say prayers at night, I often say “Lord Jesus, please take Lindsey’s autism, let her have a clear mind and achieve her best”. Lindsey then almost always says “Hey, don’t take from me, that’s my autism!” And with that I smile and recognize just how far we have come.

This blog is just about as personal as I can imagine, but if I truly want to give all of the glory to God, I need to give him the glory for healing her and leading our family back into his arms.

I encourage you all to see the blessings, not only the small gains that should be celebrated for your child’s most recent accomplishment, but also in what blessings you may not notice being at work in your life too!

We wish you all a very Merry Christmas!

So, we made an app…

Along our journey thru Autism we have discovered so much, we have learned that our daughters diagnosis has opened many doors to recovery, we have learned that diet is radically important, we have learned that no matter the severity of a child with Autism they can all improve and we have learned that many of them thrive with technology! Lindsey especially loves her tablet, she will answer questions, complete chores and achieve therapeutic goals all for “tablet time”.

Now she enjoys Youtube Kids as her first choice but a few years ago she simply enjoyed the manipulation of learning games. Unfortunately, although the games were colorful, animated and quite helpful they also created hurtles for success. Many of the mainstream games had both positive and negative reinforcement, and Lindsey was more entertained by the negative reinforcement than the positive - meaning many of the objectives were not completed properly or in many cases not at all. This was one hurtle, the other was that each “game” or “app” tended to focus on one specific skill set, there were very few choices that allowed for cross platforms, so she would get bored with it after a while.  

I started daydreaming about creating a game that had all the “good stuff” and none of the “bad”. After drawing a blueprint of what I thought could be a good idea, I spoke with Lindsey’s teacher. Her teacher was most certainly an expert in the field with degrees in special education and hands on experience in the classroom. We embarked on a wild dream of actually creating this , I had a good grasp on the flow and concepts and she merged the application so that it would reflect classroom and therapy goals. It was a challenge to find the right team and produce the game, especially on a shoe string budget, but the industry professionals we met saw value in this concept too.

It took us more than two and a half years to develop all 10 worlds and incorporate all of our objectives: spelling, handwriting, shapes, colors, math, math readiness, spatial differentials, matching, puzzles and so much more. In the end we were proud to release Little Turtle Learning Tools “Tommy the Turtle: Color Splash”. Now we feel we have contributed one more tool for parents, teachers and therapist to use while helping these kids achieve their best.

I sincerely hope that if any of you have something that you want to contribute to this community that you don’t hesitate, try your best to find a way to succeed. The special needs community really is quite special, the parents I have met during our 4+ year journey have been so supportive and armed with such fantastic information, together we really do make a difference!  

Dancing and Dreams

Dancing and Dreams

So, we recently hit a HUGE milestone, Lindsey completed her first dance recital! She practiced all year and performed on the big stage with all her neurotypical friends. As the day unfolded I was a rollercoaster of emotions, but nothing could prepare me for watching her. Smiling from ear to ear, I had tears flowing down my face and my video captures mine and all her families cheers as she impressed us.

Early in October 2017, we decided that since Lindsey had such an appreciation for music and enjoyed dance parties more than any other kid we knew, that we would sign her up for a Junior hip-hop dance class. There are some options for special needs classes, but her attention span had improved so much over the previous 12 months that we tried a mainstream class. The first night I was terrified mixed with unbridled enthusiasm, I gave her teacher a few notes on Lindsey and then sat outside peeking thru a window. I think I held my breath most of that night. I analyzed her every movement, anticipated her running out the door to find me, waiting for yelling or crying, hoping that she would be ok.  At the end of the class she ran out skipping with a lolly pop in one hand and a smile on her face. I asked if she had fun, she said she did and her teacher confirmed that she was engaged and participated well. This was night one.

From that point on every Monday night Lindsey and I could be found at her dance studio from 7:15 until 8pm. It was obvious that we tapped into a passion and we buzzed about how she “fit in”. I posted so many pictures on Facebook and showed videos to anyone who would watch her learning new steps. I thought that was the height of my pride- how could it get any better? Then costume fittings and pictures came- that too was a thrill. And then finally her big event was on the horizon. She had a dress rehearsal, that required her to be with her small group backstage for hours with parents she didn’t know in a place she wasn’t familiar with. I sat in the auditorium and waited, her song came on, her dance-mates ran to their spots and Lindsey stopped halfway to her start position on stage looked at the lights and RAN OFF stage. As if she simply said “nope” and left. She disappeared behind a black curtain. Her instructor led her back to her position and after 45 seconds of a 2.5 min routine, she got back in the rhythm and finished strong.

That night we talked a good amount about staying on the stage for the actual recital. She told me the lights were “kinda scary” and I helped her realize that those lights were going to help me see her so we could cheer! I had NO IDEA what to expect on recital day. Lindsey knew every step, but the sensory overload of the lights and loud music could cause a reaction. Thank goodness we had a dress rehearsal because on recital day she was comfortable backstage with the other moms and was ready for the lights!

So as her song began to play, and her class took to the stage I once again held my breath, she ran out with a real pep in her step and immediately started the routine. She wasn’t perfect, but few of the six 7-year old’s were. She fit in PERFECTLY. Her slightly off timing on occasion brought “character” to the dance and she SHINNED! I cried. I was so happy to see her do well, but even more to see her do well in this setting with mainstream kids and to hold her own. She was proving to me, and to the world that she can rise to a challenge and she will succeed.

I know it may sound silly to put so much stock in a dance recital, but it wasn’t that long ago that she wasn’t verbal, that she wouldn’t listen to simple requests of sitting, or to someone yelling “no”. She had made great strides in the last few years and to adapt to an unfamiliar setting, with so many distractions and so many uncertainties was quite impressive. It showed me, that I was right to keep pushing her, encouraging her, and helping her. She can master things with grace. And has a very bright future.  

I write this blog entry to encourage anyone to take a leap of faith with their kid, sometimes it wont work out, sometimes it will prove to be too hard but sometimes, just sometimes, magic happens and they exceed everyone’s expectations. Take a chance- with you – with your child- with a friend, you never know until you try. Our kids really can improve, heal and go further than they often are given credit for. I hope this story gives you that extra push to try something new too.

    Here are a couple pictures I snapped thru the little window on a random Monday night:

Being Complacent

Being Complacent vs Being Inspired

Several weeks ago in church our Pastor urged us not to be complacent in life- his words were insightful and stayed with me far beyond the hour attention it required. I started recognizing areas that I had become routine with my spiritually as well as a mom, wife, daughter and friend. Although I did not make huge changes I tried to be aware of how complacency could be a downfall of mine if I let it.

You see when you have a child with special needs especially a child with Autism your routines are what save you. You go thru very predictable steps each day so that they know what to expect and to help you manage whatever protocols you are in the midst of.  Routines have saved us from terrible tantrums over the years and kept me on schedule with supplements and medicines. But complacently is born from routines.

When we started this journey, I was an addict to new found knowledge, I wanted to learn it all and implement everything. With each gain we made, I wanted to add more knowledge and more to our protocols for Lindsey. Somewhere along the way learning, implementing and studying became replaced with documenting and celebrating. We were thrilled to have had the initial huge gains and were quite happy to see the slower abilities come into focus. The pace slowed but our satisfaction and pride in new found abilities made me very complacent in pursuing more.

This weekend I had the opportunity to go to a TACA conference. It was very exciting to attend, many of the doctors presenting are doctors I had read about and followed, the information washed over me as a wave of enthusiasm. I felt energized and encouraged. Some of the new research is beyond fantastic, there are new correlations and ideas, things that can change the course of many of our kids lives.

All of our kids’ journeys are different and as I have said before- what works for one child may or may not for another. We are all at different points in recovery and some steps may feel huge but the reward could very well be worth it.  

My inspiration for writing today is simply to encourage you all to try to step away from the complacency that comes too easily to us and find some new challenges, find something else to try to investigate and to be excited by. Our kids recovery and every time they learn something new is the most amazing reward- don’t cheat yourselves or them out of finding new levels of success together.

I realized this weekend that I needed this conference to inspire me to do more, I had rested on a protocol that has been working rather than adding to it. Lindsey has made wonderful gains and I hope to relay in the near future even more exciting accomplishments.