Pandemic Parenting

We all got thrown a curve ball as 2020 got underway. The lifestyle, routines and our expectations got turned on their heads as we were left scrambling to adjust only a couple months into the year. Suddenly we were asked things that we could only imagine being asked in a Sci-Fi movie. The world shut down. There were no places to go or things to do. The school requirements were shifted to our kitchen table and work now took place in pajama pants and virtual calls. Surviving this is challenging for us all. Having a child with special needs means maybe a few more things to consider along with all the rest.

Every parent struggled with finding a balance of home life, educating their child, and squeezing in work requirements. The added challenge for a special needs parent is trying to crack the code of how academics had been taught in the classroom for cohesiveness and continuity, this can be tricky if your child doesn’t communicate or is limited in communication. Another obstacle is virtual therapy, children that are using therapy to expand their attention span or skill set may not be attracted to the limited interaction a computer can supply. But the biggest challenge the hardest part is the social element.

As a parent, we try to fill all the gaps, although shaken we will rise to find a way to meet all the new responsibilities. We will get the work done, the school assignments submitted, and the house kept. We will be inventive with therapy goals and find ways to help our children reach goals or at the very least stay on track to meet goals. But how do you become the social network of friends and outings? My son filled that gap naturally by online gaming, phone calls and virtual meetings with his friends they were able to chat, play and catch up. But children with less developed communication or social skills do not have that to lean on the same way. Zoom calls are good but lack parallel play or spontaneous conversations. So, the “friendship” elements fall to us moms and dads. The task of finding time to play with our kids, without being “too busy” with our mounting and ever-changing list of responsibilities, is hard. In my case this simply leaves me feeling exhausted or guilty at the end of the night.

Mom guilt is REAL, and each night as the kids fall asleep, I am hit with a wave of “I could have done better”. I know I could do more, but it comes at a sacrifice and that is usually my sanity. I am not writing this passage to give tips and tricks that will solve this dilemma (sorry if you are now more than halfway through and disappointed by that). To be honest I don’t know of any good tricks to solve not having enough hours or mental capacity in the day, I am sure others might suggest organizing a very rigged routine or schedule to fit it all in- but I still think I would mentally check out at some point. I am detailing our experience in hopes that you may find peace of mind.

The added pressure of a pandemic is that the only social content many of us adults get are through social media, a poisonous atmosphere when we are not forced to use it as a regular substitution for conversations and interactions, much less now. Online you will find a heightened sense of moral and educational superiority, people who want to not only tell you what to do, but tell you everything you are doing is wrong- while they only post success stories of their highlight reel. You inherently will find conflict or feel like there is something you have failed at. Please know that NO ONE has it all figured out, NO ONE has days without challenges and most importantly NO ONE is experiencing your life.

Understand that if at the end of the day you feel “you could have done more” and are trying to think of ways to constantly improve you have already arrived at success. You care and I am certain that the fact that you care resonates to your family. They can see that past the occasional frustrations, past the angry tones or frazzled-ness, they can see your heart and your love.  Also, try not to burden yourself with trying to do it all, soon enough the world will open again, and we will adjust back to normal life. 

It may take time to restore all our beloved routines and the balance that goes with it, take your time figuring it out. You are not alone we all are doing our best most days and trying not to focus on the days we fall short. Love your family, smile as much as possible and when it all goes wrong, turn up the music and start dancing!

Sending Love and Encouragement-

Jeanetta

#HopeFaithandAutism

#AbilitiesWorkshop

I am fundamentally changed

Being a parent to a child with special needs fundamentally changes you. While I am now more than willing to go toe to toe with any parent, therapist, doctor, teacher or school for the well being of my child, I haven’t always been that way. Early on when I was seeing “warning signs” I had no clue what they were warning me of. When the idea of Autism came to light, I had to google what Autism was. When professionals told me about limitations, restrictions or inabilities of my daughter I was scared, I was sad and I was shaken. How do you process all your hopes and dreams for your child are suddenly gone? How do you wrap your head around your child never graduating from needing caregiving? What does it mean to fight for your child? How do you beat the odds? Where do I find success stories to propel me forward? Why can’t her teacher love her like I do? Will she ever have friends? Will she ever date, get married, have her own family? Where do I turn?

You see as we grow up, we picture our perfect lives, married with 2 kids a dog or two, maybe a cat, and a yard for them to play in. Then from the moment the pregnancy test says “positive” you start dreaming about their perfect life too. So much of this is programmed into you from as far back as childhood, and its good. We all want and should want good lives we can be proud of. But when the doctor says “Autism” and then says the list of “Nevers” that inevitably will follow, that vision that you have cultivated your whole life shatters. All of a sudden you are struggling to understand your new reality and often jump into action so fast that you never let yourself process the trauma. So, the grief will come in waves, silent moments where you let yourself- just for a moment- let go, not hold on so tight and have the needed breakdown. You don’t wallow, you don’t have time for that but you do need these moments to be honest with yourself and heal. These moments not only allow you to heal, they change you. Each time you stop, pause and grow- you mature and develop into the new you.

The person you are becoming is so much stronger than you thought capable, this new you can hear the words that use to cut like a knife, the new you can see the progress of your child, despite the setbacks and challenges. And the new you can fight for your child in ways no one else can and ways you never thought possible. You will find endurance to stay up all hours researching, you will find hope in others stories, you will find solutions in resilience. You will find friendship in others grief and you will prevail in being your child’s champion.

Do not lose heart in being sad, worried or overwhelmed. Know that each of these moments is shaping you into a warrior. You very likely are in for the fight of your life and it is certainly the fight of your child’s life, but should you overcome the 1,000 battles and endless war- you will have managed to help your child become their best and you can rest knowing that the dream you had for them once upon a time has been replaced with a bond and love that is indescribable. This new reality will fill you with a new vision of their future and if you really dial in you will see the thousand little miracles every day is made of.

I may have lost the idealistic, naïve, and short sided version of myself, but I now have perspective, love and hope. I can sympathize with others; I can understand pain and I can see hardships. Life can be hard, but it can also be beautiful. Learn to make your plans flexible and enjoy the moments along the way. 

        

My Island

I live on a magical, sometimes deserted, sometimes overcrowded, weird and happy little island. Its such a strange thing to always have one foot in the special needs’ world and the other experiencing what is best described as “typical or traditional” parenting.

As our journey as unfolded we were determined to help Lindsey be her best and not let any opportunity to pass us by. Much of our time has been spent helping her and watching her blossom, all while caring for, loving and supporting our son in his childhood experience. He has had a front row seat and has learned how to educate others, create ways to be inclusive for those that have challenges and most importantly how to be his sisters’ best friend. It has been said that the most magical part of a wedding isn’t watching the bride come down the aisle, but watching the groom watch her come down the aisle. In my case it is an obvious “awe” moment to see the accomplishments of Lindsey, but to watch Jackson encourage her, include her, stand up for her and show compassion and love to her friends and others that come across our path it is uniquely amazing. I am a proud mom. This is not to say he doesn’t get in trouble for wanting to play too many video games or for not finishing his homework. He certainly knows how to be a perfectly imperfect 11-year-old boy. But he is growing into a wonderful human and while I know he may have made some compromises along the way, the character he is growing will take him far in life.

So, I balance being Jackson’s mom with being Lindsey’s champion. This means I spend a great deal of time fighting for her medically, academically, socially and spiritually. I shout her story and how God is using her from the mountain tops and I see no slowing down in the future. She has come so far; she is indeed a miracle. Remember, we were told she would never talk again, that she would not have friends, or the ability to socialize, show love or affection. We have watched her defy the odds and over time and through hard work she has become a chatty, funny and smart girl! These accomplishments mean her trajectory is bright, but we are not so naïve to believe she is at the finish line. She still has work to do and mountains to climb. Leaving me once more split between two worlds. In this case it isn’t parenting a neurotypical child vs a child with special needs; it is finding my place hovering between the parents with children severely affected and those children that are no longer needing any services, therapies or treatments. Where do we “fit in”? We give encouragement and hope, and we are still learning. I struggle anytime Lindsey meets a new parent that has been inspired by her story, I worry that she won’t make a strong enough impression or that they don’t see how far she has journeyed and lose the fire that her experience brought them. Alternatively, I also worry that she is too advanced for some situations and that I am doing her an injustice by not pushing harder or searching more for the next big step.

Ultimately, I find myself on this quirky little island never really knowing if the next boat of people to arrive will be immersing me in middle school parenting, allowing me to be a shoulder for someone to lean on or a tribe of love and support. Some days it is a party where everything is going well and others it is very lonely and causes doubt. The doubt is that somehow, I am not doing enough; enough for him, enough for her, enough in general. But it is important that I cut myself a break, I AM doing enough because I love them with all that I am and it is not up to me to determine either of their destinies. God has a plan and I am simply trying and failing to be his hands and feet in helping them become their best selves.

If you can identify with being on an island that has people drift through but don’t fully adhere to your way of life, you are not alone. So often we allow ourselves to believe no one fully understands or “gets it” and that the word “overwhelmed” doesn’t come close to explaining the multitude of worries. There are many of us and we all worry. Try to give yourself a break, give your worries to God, let him in, let him help. You don’t have to do this alone and it is not your job to create your child’s destiny. I hope this entry helps you see that we are all united by our stories, our children, our victories and our concerns. It is ok to feel down and out of sorts, none of us have it 100% figured out. 

You are welcome at my island anytime! 

      

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

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: