(Hello friends, for those of you just joining my journey, normally I share from how God is shaping my soul. However, in April, I am going to share a few writings from my heart as a special needs mom in support of Autism Awareness month, for surely special needs have been among God’s warmest ways of shaping me. Below, please find a blog I first posted May 5, 2015 in honor of my eldest’s graduation. At the end, I’ll offer an update on his college journey.)
Dear Mr. Neurologist,
I know you were trying to be realistic. I know you were trying to spare us unnecessary expense. I know you were doing your job. And I know you were certain that your counsel was true.
15 years ago, my husband and I sat with you in a little room for 15 minutes. We brought to you our precious son with concerns about developmental delays. You gave him direct commands for 10 minutes, clearly saw his inability to respond and connect, and then accurately announced, “You son has autism.” While we sat there in stunned silence, you continued, “You’ll hear of diets, detoxes, and alternative therapies and they are a waste of time, money, and energy. There’s nothing you can do.”
“There’s nothing you can do.”
I wanted to write you last year to let you know that the two-year old you saw 14 years earlier received his driver’s license at the age of 16—with 100% on his performance exam.
But time flies, so I am writing you now to let you know that the two-year old you saw 15 years ago is graduating today from high school at the age of 17 after passing his HISET with flying colors. And his next step is to begin college with rather remarkable giftings in animation, programming, and video editing and with his perfect pitch, near perfect rhythm, and craving to learn.
Yes, he will need a support network for the next step. And yes, Barry and I spent a truckload of money getting here on evaluations, therapies, and diets. He has been in speech therapy, music therapy, occupational therapy, behavior cognitive therapy, and social skills therapy. He has seen psychologists, educators, naturopaths, chiropractors, brain mapping specialists, allergy doctors, and perhaps half a dozen or more neurologists who, like you, were excellent in their trade. He has gone gluten-free and dye-free and organic. He has downed countless supplements and absorbed hundreds of hours of tutoring.
And yes, he has wept over his differences and melted down over life’s loudness. And emerged as a man with a golden heart.
This letter is to you, but I will take the space to thank others.
Today I thank my son for being among the most courageous and pure souls I have ever known. Today I thank my extraordinary husband who lives out his profound calling of dad with love, grace, and humor. Today I thank my angel Mom who has devoted her life to serving me and my tribe. Today I thank our family and friends who have prayed and believed and supported us in every way imaginable. Today I thank my son’s teachers and tutors and therapists who have listened and learned and led. Today I thank his pastors and peers who have made a special place to champion a special soul.
And I want to thank you too, Mr. Neurologist, for what you sincerely got right and for what you sincerely got wrong.
I thank you for where you were correct: my son is on the spectrum. Your certainty sent us in the right direction. And I thank you additionally for where you, without malice, erred: telling me there was nothing I could do.
Oh yes, there is something I can do. There is always something I can do.
I can love.
I can believe.
I can pray.
I can hug.
I can weep.
I can stand.
I can fight.
And I will, while I have breath, for my boy.
(Posted with my son’s permission, who said, “I love it, Mom. Post it!”)
(And the update: Jonathan is in his second semester at Missouri State University. The first semester was like climbing Mount Everest as far as his learning curve in adjusting to college life. But climb he did! He’s growing by leaps and bounds and we are beyond grateful for the village that is helping him and helping us stretch toward his dreams.)
Thank you for sharing and giving hope to other families! So very proud of you all.
Bevie Jo Marquardt
Beviejo@together.net
Four and a half years ago, my husband and I took our 13 year old son to a small white room for a fifteen minute visit to hear that our son for certain had an in-curable nerve disease (Charot-Marie-Tooth Disorder, CMT) that would leave him in a wheelchair and paralyzed by his early adulthood, and we needed to seek genetic and career counseling for him. “There is nothing else that can be done for your son,” he stated.
Dear Mr. Neurologist,
Please do not ever rule out God having other plans for your patients. Even though our son presented almost five years ago with the inability to button a button, open a Gatorade, or hold onto a baseball bat, and with the inability to run well or stand on his toes due to his contorted feet and toes, we could not understand why you had made such a quick and decisive diagnosis. Your words could have been a death sentence over him…but they weren’t. His symptoms were classic; I will give you that much. But you were talking to two parents and a young teenager who believed in a living and all-powerful God. We refused to accept your painful and hopeless words. The diagnosis was wrong, or he was healed from CMT. He battles psoriatic arthritis today. He plays varsity baseball and even pinch runs on occasions. He hit a home run this season, had several stolen bases, played some first base, and pitched 7 innings, no runs last week—thanks to his whole team playing awesome defense and offense with him! He is stronger today, much stronger. Districts start Thursday. But more importantly, God has taken your words spoken over him, although we still wonder how you could have said them so bluntly and so absent of compassion, with him in the room: “There is nothing that can be done”—-and has performed a miracle in our son’s life. Nathan is an overcomer. He understands true encouragement, the kind that has depth and substance. He loves his teammates and friends. He fights on and off the field — praying for their salvation and wanting them all to succeed. He works hard. We thank God for his friends, teammates, doctors, youth ministers, teachers, coaches, grandparents, aunts, uncles, cousins, and his brother who have all fought along with us. My husband and I have seen first hand that God’s ways are truly higher than man’s ways.
Most Sincerely,
Nathan’s Mom
And yes….. As Alicia just stated above in her blog:
We can love
We can believe
We can pray
We can hug
We can weep
We can stand
We can fight
And Jesus is doing the same for our son too. Praise God!
(Published with Nathan’s
Permission.)
Thank you for sharing your story Alicia.
Glorious!!!
Thanks for sharing it’s give me hope for my 10 year old son Miguel. God bless you.
Pam
Wow, what a beautiful mom you are. I think maybe all of us special needs mom’s have run into a doctor of this kind and proven them wrong. My son is 33 years old and we have traveled a long road together to get him to where he is today. Yes he still has Autism but is doing somethings docs say he wouldn’t. I’m so Thankful for my job now where I can teach him more life skills,he has trouble wit h the world’s way of things. He has made me a stronger mom…love him so much
Oh, Alicia, I love how you love so fiercely, determinedly and purely. How often I have asked God to show me how to love well… You are such a beautiful example for me. I see His character displayed in the way your family cares for one another. Thank you!
~Susan Cromer
Well done, good and faithful, Mom!!!!! You have done excellent in trusting in our faithful Father to lead you and Barry in being a part of fulfilling Father’s dream for Jonathan. I know what a rugged road that can be, (as I have been down the same road) but the rewards in this world are joy filled satisfaction and in eternity beyond comprehension! I’m so thrilled for Jonathan!
Debbie Eaton maywebe1@aol.com
This is remarkable! Thank you for sharing your inspiring story so beautifully and it will indeed spark hope in the heart of every parent and grandparent that may be searching for what they can do.
Loving mother and I admire your commitment and faith✝💜🙏🏼
As an retired educator, this post truly touches my heart. I am so very proud of you, Alicia, and your awesome husband, Barry. Such warriors, not only for God, but also for your kids. Love to you all!
Ginger