Saturday, March 16, 2019

5 Years

Monday, March 31, 2014. That is the day that changed our lives. We waited 5 months for this appointment and on that gloomy and gray day, Lindsey was formally diagnosed with Autism, ADD, ADHD and a host of other acronyms. Her health didn’t suddenly fail or a new condition appear, but for us in a moment where we had only flirted with the idea of Autism, it became very real. We, like so many other families had always skated through life with things like this happening to someone we knew- not actually happening to us. I remember being shocked for two reasons, the obvious that it was “real” but also because during the entire assessment, I was unaware that the doctor was completing an assessment, I thought we were simply doing new patient questions for a new doctor that specialized in pediatric development. You can imagine my disbelief; my heart was pounding and hands shaking as this doctor expressed, we needed to simply “love Lindsey for who she was”. The doctor told us so many things in that moment but the words I will never forget are “She likely will not talk again, she will not have friends, she will not be able to do sports-, she will not be able to express her feelings…”. I didn’t know very much, only enough to feel scared and it was terrible.

While we were shocked by the delivery of the diagnosis, we were not shocked with the news. We were keenly aware that something had been off for a while. Since her 18-month shots she had regressed – we needed to know what was wrong and where to start. Fortunately, God had a plan for us. We met parents quickly that guided us to her recovery and encouraged us on the good days and most importantly on the bad. Our story- our journey, is something I am very proud of. What she has overcome is amazing. It is now that we are standing at our 5-year anniversary that I find myself drifting back so often to that day. I wonder if I had the chance to tell myself what lay ahead what I would tell my 5-year younger self.   

I would like to think my first words would be “it is going to be ok, it will be hard and sometimes the progress will be so slow you wonder if you are doing enough or if you are on the right path. You will find your way, God has a plan and Lindsey will recover.”. I recognize that those are the exact words that I also need to hear again right now in 2019. Lindsey’s victories are immense and there are so many things to be proud of, but for now and for a long while ahead I imagine she will be trying to “catch up” academically, socially and medically. We are so close to neurotypical, but not across the finish line yet. Our history shows me she will prevail, but oh how I would love to hear from my future self to have the peace of knowing 5 years from now she is ok!

I wouldn’t shy away from talking about the emotional rollercoaster, the hard days where you FIGHT for your child. The moments where you feel completely alone and no one can understand the internal struggle. The moments where your fears overcome you. The moments where you feel lost. The moments where you cry by yourself. But then I would also share that those are the moments that help you rebuild your relationship with God. And those are the moments that allow you to feel more pride and love than you thought imaginable. Those hard days allow you to see the small victories and recognize that NO victory is “small”. The loneliness allows you to appreciate the family and friends that “step up”. The internal struggle paves the way for a bond that is indescribable.

I would tell myself “you don’t have to know everything, you will learn along the way”. This journey of recovery is overwhelming but do-able. I would also tell my younger self that doctors- especially in this field- do not know as much as you do, follow your gut. Lindsey will express her feelings, words and thoughts, Lindsey will have friends, compete in team sports and be a light in the lives of everyone who meets her. And my final thought would be “just never stop, never stop trying, learning, sharing or loving”.    

I do find myself reflecting back with each new parent I meet, I can instantly remember the swirl of questions and fears. I can relate so much better than they will ever realize. Each conversation I have I starts with “it is going to be ok”. If you are a parent that just had your world turned upside down please hear these words “IT IS GOING TO BE OK”. Read our story, read others stories of success and join groups of encouragement and enlightenment. The most intelligent, wise and diligent people I have ever met are parents of kids with special needs. They don’t give up and they fight for knowledge, truth and solutions. Meeting these parents because of like circumstances might mean that your life has challenges, but it also means you are among true warriors and you will gain strength being with them. God has not left you behind, he has promoted you. Take this opportunity to lean on God, let him give you peace, love and purpose.

I am eager to see my post 5 years from now and look back on this moment in time. I wish I could see your story in 5 years too! We chose to celebrate this anniversary because it shows us where we started and gives us the chance to relive the moments where we beat the odds. I encourage you to find celebratory moments and really enjoy the steps to success.

#autism #autismhope #hopefaithandautism

Monday, November 26, 2018

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!

Thursday, September 20, 2018

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!  

Tuesday, June 5, 2018

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:

Tuesday, February 27, 2018

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.


Saturday, April 1, 2017

When inspiration strikes

Those of you that follow this blog or have read my tidbits may have noticed that I don’t write consistently I write in surges of inspiration. I try to limit my stories to things that may bring value to others rather than simply use this platform as a diary. Last Sunday, as I sat in Church inspiration hit me over the head, as a matter of fact, I envisioned writing this post. I thought about what details I would include and what I would leave out, I had to remind myself to actually listen to the sermon that coincidentally was the same message in many ways as what I wanted to write about.  

The sermon was inclusiveness aimed to point out the value of being with other Christians and how when 2 or more are together in God’s name a church is formed. In many ways, this was deep in context for me I understood the principle and enjoyed the message but on a very different level I understood what isolation can feel like. I am in the unique situation of having a neuro typical child and one who isn’t. This means I have seen the perks of how easy it is to have your child included in traditional childhood experiences and not included, this varies from birthday invitations to if your kids have playdates or not, to quite frankly if they have friends or not. But that isolation doesn’t always stop with them, it extends to the parent. We are fortunate, we have wonderful friends and family that really will never know how much they shrink that gap, but trust me the gap is there. When you go ANYWHERE and someone doesn’t know your story, there are glances, comments, confusion and aggravation for strangers when a situation isn’t perfectly “normal”.

We take all of this in stride, I do not expect the world to change for us or my daughter, I do not hold what people don’t know against them, but on the flip side I started to wonder how I could be more proactive with folks that I knew must feel isolated. I have become quite familiar with the signs of Autism, on some days I feel like a Doctor able to diagnose kids even if their parents are unaware- BUT I am not a doctor, I cannot diagnose all I have is an opinion and depending on how it is interpreted it can likely be felt as judgement.

So as I sit in church, on this day the back row, a man and his son sat down next to me and Matt. The boy was Lindsey’s age and was eager to take his shoes off the moment his rear end hit the seat, his dad without saying a word slipped his off in what appeared to be very much and action of solidarity. This may be something that people do in some churches, it is not familiar to me. I am familiar with how Autistic kids often can feel uncomfortable in their own skin, much less clothing, socks or shoes. So, I took note and was happy to greet them when the time came. Nothing more than “Good Morning” was said but these two had captured my attention. They didn’t do anything outrageous, the boy squirmed in his seat some, the dad would simply hug or embrace him when he seemed restless, from time to time the boy who was closely listening to the sermon would answer some of our pastor’s questions out loud, or make conversation about it to his dad in a similar conversational skill level that Lindsey has. I couldn’t rock this feeling that this kid sitting 2 seats down from me has AUTISM. He was definitely higher functioning, but the dad knew exactly how to tend to him and make this experience as “typical” as possible. Obviously, I don’t know for sure this child has any diagnosis, he may not, but my 6th sense told me this family seemed to have a very similar story to us.

Now came the hard part, do I say anything at the end of service? Our preacher just explained how important inclusion was? Would it be beneficial for me to find a way to strike up a conversation? Or would it be hurtful to them in some way that I noticed the differences even after all the effort? Or even worse what if they haven’t had “our story” at all what if I have misread all the clues and am flat out wrong, they may find that insulting. So, I sat there and when it was time to go I started to follow Matt down the aisle, but turned back to the dad and said “You know he really did quite well sitting thru the whole service, have a great week”. Somehow, I landed on simply giving a complement, regardless of if he was “neuro-typical” or not, he was good, and his dad had done everything to help him enjoy the service.        

I think I was compelled to share this story because this is something I really struggle with, I want to be helpful to anyone I can but how to help, or how to start a conversation is something I still don’t always know the answer to. I like where I landed on Sunday with simply offering a complement, I think I will try to do that more. After all is said and done every parent likes having their child complemented, and you never know if that one sentence is what that one person on that one day needed to hear to feel included.

Don’t let your thoughts, suspensions, or the unknown paralyze you, I think the worst thing I could have done last Sunday would have been to leave without saying good bye. I would have kicked myself for days for not trying to have said something but being kind hurts no one and I hope that if his sons story and Lindsey’s are similar that that dad left feeling even more proud of how well he had done and that I noticed what a good dad he was too.  I also hope that the next time you see someone and feel like you “know” or that you can sympathize with a situation that you have the confidence to find something to complement for that parent, neuro-typical or not we as parents can always use uplifting words!

Thursday, December 1, 2016

Everyday Struggle, Everyday Success: Extreme Parenting

I often find myself going thru the daily motions of getting the kids up, out the door and to school, then communicating their needs with teachers, therapists and coaches prior to picking them up, shuffling them to activities and having dinner, then its showers, bath time, medicine, brushing teeth and bed time prayers. This is the very same as most parents, we all have busy routines and hectic responsibilities- it’s the smiles and laughter, the memories made that push us forward. I know that my days may consist of a few more conversations or a bit more planning, but that’s life. I don’t ever focus on the added responsibility of caring for a special needs child- until I do.
 I recently found myself so frustrated with my husband for asking the most innocent of questions about Lindsey. I had to take a moment and self-diagnose, “why was I so annoyed?” “Why did this question strike a nerve?” After sitting in the quiet of the house once the kids were asleep I realized that being the champion for Lindsey does indeed take a toll. I have to be the expert on her, I keep all of her abilities, her challenges locked in my mind. I am not only the keeper of her secrets but also the solutions. I know her medical history, therapy history, academic abilities, social success’ and friendships.  I am the one that studies new pursuits, new medical interventions and has candid conversations with other parents in an effort to better her world. I am grateful to be her champion, I am thrilled that God trusted me with her development and I am rewarded with her love. But that doesn’t mean that it’s not hard. I am going on pure faith most days that the elements we have added are the best solutions, that the advice we have sought is the wisest and that her trajectory is aimed for success.
 While my husband is an amazing pillar of strength to me and gives us his unconditional support in everything Lindsey- I realized that I was annoyed that night because it was a question I simply couldn’t answer. I didn’t keep all the solutions to why Lindsey does what she does or how to correct it. I was annoyed because it was obvious that even after all this time and all the progress there is still more to be done, and mostly because I don’t know where to find all the answers. It’s tough when all you want is to help and you know in your soul that you simply don’t have all the tools you want to have. We all want to guide and protect our children, we want to steer them to leading exceptional lives, but how do you do that when you don’t know why a child suddenly screams or is crying hysterically for no obvious reason, how do you explain to others how to handle a situation when you are blind to why it’s happening. Ultimately, these are moments, they pass and fortunately they happen less and less but they still make you question why as their mother you can’t “fix it”.
 This post is an effort to give all parents especially special needs parents’ permission to feel overwhelmed, it’s ok to be frustrated; it’s ok to not yet know all the answers to your child. It is unrealistic to think you will ever hold all of the keys, so appreciate the moment when you do have the insight and enjoy the good moments. Those precious good moments when your child looks at you and without words lets you know that you are a super hero to them. The best part of being a special needs parent is learning to appreciate the little moments, the sweet silent smile when they are victorious at a task or the joy they have when they communicate a desire and you are the only one who “hears” them. Savor each milestone and know that in large part it’s happening because you are supporting them with all your love and ability.