Nathan and Early Intervention

I hate divulging deeply personal thoughts and feelings in such a decidedly UN-personal forum, but I also don’t want to have this conversation a thousand times either, so I need to put this out there. I’ve written on Facebook about Nathan beginning Early Intervention. A lot of people are surprised. A lot of people, I’m sure, think he doesn’t need it or that I’m being over-sensitive because of Liam’s issues. The truth is that there is a lot I have not shared about Nathan because it is too painful for me.

Over the past couple of months, Nathan has begun to regress. Although he seemed to be developing more typically than Liam did, and I thought that maybe the loss of some speech was a phase due to developments he was making in motor skills, he is not progressing. And, in fact, he has recently lost ALL of his words. He used to say hi, buh-bye, mama, dada, up, down, hat, happy, all done, ball and could answer yes or no questions. I can’t get him to say anything anymore and eye contact is diminishing as well. In addition to this, he’s been eating non-food items (a condition they call “pica”)… not natural toddler curiosity and putting things in his mouth, but really EATING truly disgusting things (charcoal, dead worms, dirt, sand, bark, POOP). He seems to have some of the sensory issues that we’ve dealt with with Liam as well.

When Liam was diagnosed with autism, there wasn’t much of a grieving process. I’d known since Liam was a baby that he was different and, in fact, told Jesse I believed Liam was autistic when he was only 8 months old (about 3 years before we got our official diagnosis). Liam never developed typically. He had trouble meeting every milestone. So with Liam, it was all struggle and fight and then celebration whenever he learned a new skill, no matter how small. Holidays are still hard for me and some other times when I think of all the fun stuff I always wanted to do with my kids that just really aren’t practical now, but for the most part, I have dealt with it.

But with Nathan, not only was he developing more typically, we described him as “The World’s Happiest Baby” (he now cries most of the day & rarely smiles) And so what is happening now feels a lot like he is disappearing before my very eyes. My son is slipping away from me. Every day I see less and less of him. I am devastated and heartbroken. Sometimes I get so sad that it feels like I may stop breathing altogether.

I love my kids. This doesn’t change that, but I am sad. And I’m having a really hard time right now. I needed to put this out there so that when little bits and pieces of it slip out into our normal conversations and you get confused because you thought everything was great, I won’t have to go into detail. Because really, I can’t do that. It’s all too fresh and tender at the moment.

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9 Responses

  1. Carol Harris says:

    Oh Shauna, I wish I was there to hug you….

  2. Shauna says:

    I love you. And your family. *hugs* I wish I could make it all better.

  3. Phani Morgan says:

    Oh Shauna, this post made me cry knowing of your deep sadness over what is happening with your precious little Nathan. I wish I could hug you right now. Your boys are soo blessed to have you as their mom and Jesse as their dad. How blessed they are to have such a loving and caring parents. The Lord knows of your heart break and of your struggles. May He comfort your aching heart and guide your decisions regarding your little guy. I love you Shauna.

  4. cousin heather says:

    Big fat tender hugs Shauna. I did know some of this already, but I can totally believe how heartbreaking this is for you. Please let me know if there’s anything I can do for you. Hugs, babysitting, girls nights, a really loving and unjudgmental shoulder… I love your guts.

  5. Marc says:

    Forget that we haven’t seen each other in years, forget that we have wildly divergent ideologies on religion, forget that thousands of miles separate us, and forget that we aren’t the people we were back when we were close. Forget all that, and remember that I love and respect you TREMENDOUSLY. Know that I wish I could give you a great big hug and a shoulder to cry on, for all the many times you did the same for me when I needed it.

    My heart hurts for you, and for your husband whom I’ve never met but who must be a pretty darned cool guy for you to marry him. ;o)

    And don’t take this wrong — I’m not saying that I think autism is the worst thing in the world or anything like that. Honestly I don’t know all that much about it; I am just so moved by your sadness and those words of “watching your son slip away” that I can’t help but feel this incredible outpouring of empathy for you and your family.

  6. Ellen McQueen says:

    Jesse and Shauna,
    I will pray for recovery. And let John and I know if we can help in any way.

  7. Jean says:

    Oh, Shauna, my heart hurts for you. Much love is being sent.

  8. Jenny says:

    I’m so sorry, my heart breaks for you. This struggle must be unimaginably difficult.

  9. Anne (cousin) says:

    Shauna, thanks so much for sharing. It brought tears to my eyes. Part of the pain in any trial comes from feeling like you’re alone and have to suffer it alone. It also comes from uncertainty, and not knowing what will happen and how you will ever survive. I wish there were some way we could shoulder some of your burden and sorrow. We will remember Nathan in our prayers.

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