Autism, Incarnation, and Joy

My son Jack will be two years old at the end of January. He is beautiful and healthy. He has an amazing laugh. He makes adorable car noises when he plays with his Elmo automobile in the bathtub. He thinks snow is the weirdest thing ever and his mind was blown this week by Jello, which he couldn’t decide whether to treat as a food or a toy. He likes our little 20 pound white Westie dog, but he’s still learning how to pet her gently. His favorite book is Alpha Ducks and, frankly, it’s a dreadful read. Sometimes he’ll be in the middle of playing with some blocks or eating a snack and will stop everything to walk over and give me a hug and a kiss. It only happens about once a week, but when he does that…it feels like the world stops for one perfect moment.

Six weeks ago Jack was diagnosed with autism.

Even now there are tears welling up in my eyes as I type that. In my best moments I am deeply saddened because I know this world is difficult enough without having to start out at a disadvantage from most people. In my worst moments I am deeply saddened because the picture in my mind of what our lives would look like — what we would enjoy doing together, what his interests might be, what his capacity might be — has become far less certain. Autism is an incredibly broad spectrum, and it ranges from severe and debilitating to mild and unnoticeable once someone has had therapy.

The truth is we don’t know what this will mean for him. And we don’t know what it will mean for us. What I do know is this: my son is still the same little boy today that he was seven weeks ago before we got the diagnosis. He’s the same little boy who loves snow and Jello and dreadfully written books. And while he may or may not be able to live what we would consider a “normal” life, he can still stop the world for perfect moments. How many people can say that?

I am learning what it is to be a father in so many different ways, but this latest news brought to mind a comment Henry Nouwen once made about God’s glorious love: “I cannot fathom how all of God’s children can be favorites. And still, they are. . . God loves with a divine love, a love that cedes to all women and men their uniqueness without ever comparing.”

Jack may not ever “measure up” to a standard of grading that the world holds to. Or he may. What I am learning is that he is my favorite. And it doesn’t matter if he makes the grade. I love him with a love so perfect, so pure, that all I know to call it is divine. It feels like a love that I have on loan from God. The love of a father on loan from the Father.

20 Comments

  1. Thank you for sharing all of this with us. You and Emily have given a great testimony to God’s work in your lives. Keeping you in prayer. Love to your whole family.

  2. Josh, I’m right there with you in figuring out how to parent. It’s been much more difficult than we ever thought it would be, yet still so joyful too. I’ve been learning that no matter the “problems” my children seem to be at times, they will always be my child, and with that comes this father’s love. I am believing God will use exactly the personality and the way he made them to make a huge impact on the kingdom! I’m believing that for your Jack too. I miss you man, hope all is well, blessings!

  3. Hey Josh, thank you for sharing your story about Jack. Its so touching what you have said about the fathers love for us that you and i as fathers ourselves take a loan from him to love our children the same. Brother you and Emily will be in my prayers and i hope to see you both again soon. Love you guys. God bless.

  4. Thanks for sharing. I love you guys and will be praying for you as you began this journey. May God Bless all of you.

  5. I love this , Josh, and we love that boy of yours who holds the power to stop the world for a perfect moment. As I was reading I was thinking about my kids love for Jack and how children really do reflect Jesus more than adults….they Love their cousins with unconditional love, the see the little victorious and celebrate that Jack dat on the couch with them or brought a ball to them or laughed when they sat by each other in the play room. Jack may not change the WHOLE world but he will change yours and every single person who takes the time to love him. What an honor you have to live with someone of such influence. Love y’all.

  6. Josh and Emily, I love that you have shared with us, your family. Jack is perfect. God made a precious angel and let him come as your son. He will bless you and your family beyond anything imaginable. What a blessing that God saw in you both such love that He designed Jack to be your heritage and teacher. I love you all and am praying that God will bless you through Jack in immeasurable ways. God Bless You All!!!!

  7. Hey Josh and Emily,

    I just wanted to tell you we’ve had similar struggles with Henry and I can’t recommend enough the book Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride. We did the protocol for six months, which is hard, right now we’re doing a combination of Three-lac, gluten-free diet, resistant starch, and vitamin D supplements which seem to be the magic potion of calming him down and controlling tantrums. Even if you don’t do the diet, the book is really informative. Also the website unblindmymind.org s helpful. No pressure if you’re not interested, I just instantly want to say all the things that helped us, because it’s a maze. I’ll be praying for you guys.

  8. As a mother of a son now, who are known to be more likely to have autism, I’d love for you to share (if you don’t mind) how you even knew to get him checked. It is, like you mentioned, so broad and can vary so much…I was wondering what indicators you noticed that brought it to your attention. If you don’t mind sharing… you can email me (postguard1@yahoo.com) if you don’t want it to be out for the world. This is Stasia Rucker by the way, from good ole’ GS. 🙂

    • Hi Stacia,
      Autism can look very different for each kid, but I’d be happy to share with you some of my main concerns that led us o schedule an appointment with a developmental pediatrician. Jack had only said about 8 words by 18 months. And that is being super generous…. Counting things that might not should count. He mostly babbled “Mamama” but it was rarely, if ever, specific to me. We had to work very hard to establish an sort of eye contact that would last more than a couple of seconds, And even that was sometimes hard to achieve. He wouldn’t look at things when I would point at them. He never pointed at anything that he wanted me to see. And then, looking back even further, he did a lot of arm flapping at around 14-15 months. We didn’t know that was a sign at the time. Everything becomes clearer after the diagnosis, but I had been concerned for many months leading up to it. We still have much work to be done, but I am pleased at how often I was able to use past tense when writing this post. Jack has made a lot of progress in the past 5 months! Working with early intervention has been one of the keys. There is a free screening tool on the autism speaks website that is also helpful. It accurately pegged Jack as being at risk for autism when I began to suspect it pre-diagnosis. Hope this helps! Please let me know if I can help in any other way;) hope you and your family have a wonderful Christmas!

  9. Josh you gave a great discrimination of Autism at Church by saying people with Autism see things differently.

    What I would like to point out is in today’s world Jesus and God would be considered Autistic.

    Jesus truly looked at the world through Gods eyes and saw people in a different light.

    If you look closer at the Gospels you can catch a glimpse of how Jesus and God saw the world on different levels.

    Keep your head held high as Jack may be Autistic but by being Autistic he may see things as God does.

  10. Josh……my thoughts & prayers are with you & your family. I know what you may be going through. I use to work 12hr shifts at my old job about 13yrs ago. I had a wife & 2 young kids at the time. My son was 9 & my daughter was 3. My then wife never had a drivers licence. So I would come home from work after 12hr shifts & take her 2 her job. Then I’d come back home & stay up all day watching my daughter while she worked. This was something I was use 2 doing, I’ve done it many times before. But that one day changed the lives of many people, but especially the life of my precious baby girl. I had put a childs gate across the one doorway in my home to hopefully get alittle nap in before going back to get my wife from her job. I put in Blue’s Clue’s to keep my daughter occupied while I tried to sleep. I don’t really know how long I was sleeping all I know was what I saw when I woke up. I heard my daughter gasping for air, a sound I’ll never forget. I got up off the couch & rushed to her seeing that her tiny little lips were turning blue. I knew then she was choking on something. I picked her up & ran her next door to my neighbors house who happened to be my wifes Aunt & Uncle. Her uncle was a nurse in the military & right away said that she was choking. I felt helpless & to this day responsible for what she was about to go through that day. He called the ambulance & they took me & my daughter to Hershey Medical Center. After being there I got the news that she had a bead inbedded 3 layers into her lungs that they were gonna do surgery. They removed the bead from her lungs successfully but said her brain had been without oxygen for awhile. My heart just dropped cause she was in my care at the time. The one time I fall asleep after all the times I didn’t changed her life forever. She is 16 years old now with the learning level of a 4th grader. The teachers say she’ll never be able to work a full time job or even be able 2 drive a car. So much takin from her from my carelessness. I know that God can forgive me for most things, but I really hope that she can forgive me. She is my world, she is my heart & soul & I know she was sent to me from above. Its hard everyday to look at her & seeing her struggle to learn & to understand most things knowing it all started with me. Even if she has already forgivin me, I’m having a hard time forgiving myself. My precious innocent child struggling in life cause of me on that one day 13yrs ago. I cherish every minute that shes in my life. Every smile she smiles. Every look she gives me when she thinks daddys crazy. She is such a kind & tender child with a heart of gold & I love her dearly. She is classified by the state of Pa as being mentally retarded. So I know your blow Josh & I know it hurts. But you’ll cherish everything about him as you do now & he’ll know & see how much he is loved……..keep faith & God bless you all

  11. My boyfriends son 9 years old and he was diagnosed with pervasive development disorder this year which includes autism. It’s been hard for my bf in the past 9 years trying to parent, he just thought his son had a severe learning disabilities but now having this diagnosis things may turn out differently for his son.

    They recently put his son in a life skills class at school which is helping a lot.

    Hopefully, your son doesn’t have it to bad.

  12. Josh, thank you so much for sharing about Jack.
    Having raised three boys, I get that sheer Joy.
    God has blessed you with such a willing and loving heart
    And also with this perfect young little boy!
    God knew exactly what parents to loan Jack too.
    Enjoy the blessings that God gifts you with each day!

  13. Josh and Emily, I am in constant prayer for you both. I think that sharing your struggles, thought processes during this time and raw feelings, took a lot of strength and trust to share something that big. As a member and parent I appreciate that transparency and rawness of feeling. I can’t say I can relate in any way shape or form to your circumstance but i can say this… You belong to this INCREDIBLE church family and I know for a fact you wont face this alone and we will all be here to support, love, pray for and cheerlead you all along the way. You, Emily and Jack are blessed through this time and Matt and I will be in continuous prayer for you and your beautiful family for guidance and strength.

  14. I belive in miracle and God has so many way of healling specially those innocent children of his so all i can say to you and your family is stay strong be patient and keep your faith. remeber when you are a strong beliver and have strong faith the obsticle is higher like Job in the bible. i will keep you and your family in my prayer!

  15. What a wonderful testimony. Prayers coming your way. I am from Carlisle Evangelical Free Church and we have a special needs program. If you don’t have one I would love to fill youIin on ours.

  16. I don’t know you but my friend in Carlisle sent your beloved message out via facebook…
    when our son was two,, I remember being told by a professional, “I don’t think it’s autism…”
    Now he is 16 – I can tell you that God has surely provided for us, every step of the way, in a myriad of ways. I can tell you that we have been blessed to meet and now have the most wonderful people in our lives. I can tell you that I don’t understand why, but I am learning to accept. God bless your family in new and amazing ways.

  17. Thanks for sharing, Jack is a beautiful boy and by that smile a very happy one and I know he is loved and you are great parents. God will carry you through this. Our prayers are with you both.

  18. Geez, Josh!
    Pennsylvania? I think it was Missouri last I remember. Or was it Illinois? Or Texas?
    You know, 1 Peter 2:11, there’s a spiritual and symbolic aspect there as well, don’t take it so literally!

    I need to check up on you sojourners more often. I’m glad you have pictures here, you and Em look good. And Jack- Man, has it really been that long, you have a two year old, amazing little boy? He really is fearfully and wonderfully made, just as you are Bro. I’m delighted that you can see that. Your questions about the future, we all have those. (Except for God, but we can debate that another day).

    I remember being struck during the musical Godspell when people were approaching Jesus one after another, and he greeted each one with their own private (personal) handshake, which was theirs alone with him. The point was that yes, we’re all family but he loves each of us intimately in a way that no other could know. That’s your family. The three of you are going to be blessing the daylights out of each other in ways only you can. Only because you are the way you are. It’s all grace, man.

    Well, I had a few minutes before heading off to bed, and it occurred to me to spend them here. I’ll have to come back and do some more reading.
    Peace and love from MN,
    -derifter

    • Derifter! Great to hear from you, my friend. Thanks so much for your kind and encouraging words.

      We’ve been in Pennsylvania since 2011 and it’s where we plan to be for a very long time if they’ll have us. Hope you’re staying warm this winter. Please give my regards to your lovely bride.

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