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