Tuesday, November 2, 2010

Thankful That We Are Not Alone Project - Guest #1

My friend Susanna is my first guest blogger. Kudos to her for being willing to go first!

"Micah is my six year old son. He is on that "spectrum" no one wants to be on.His teachers say, however, that he's a big conundrum to them. In many ways, he doesn't fit the typical autistic child. Most of his issues, they say, stem from sensory stuff. The only thing definitive is that he is on the spectrum. And, that's hardly definitive, since no one really understands autism anyway. The latest diagnosis is what they call, in the state of Georgia, Severe Developmental Delay. Or in other words: ?????

Unlike many parents, I did in fact worry when I was pregnant that something could be wrong, being the constant Debbie Downer I tend to be, but I prayed and hoped for the best. But when he came out looking so perfect, so cute and healthy, those fears were laid to rest. About a year later, and my son was not hitting his milestones, we chalked it up to him taking his time. When a year and a half came, and my son went behind what I call "the window", I asked my doctor to do a screening. My doctor said we would wait until he was two. I knew something was wrong, so when he turned two a few months later, and was found to be behind, we hit the ground running with getting his paperwork through, and getting into some programs. My pediatrician said, "You need to stimulate him a little", and that was the first bug in my ear that is was probably just me not knowing how to be a good parent.

Many programs proceeded. He was observed a lot, and many experts had their different opinions on what category Micah fit into. This is the part of the story where I'll say I understand why over 80% of couples with a special needs child separate. My husband was grieving in his own way, and had to withdraw from Micah for a while. The pain of seeing his son turn out to not be typical, and to not know how to help help him was too much. He withdrew from Micah, and inevitably, me. I immersed myself in programs, volunteering, moms' groups...anything that would keep me busy, and my mind off of what was happening. I was heavily involved with Micah, and yet too busy to have many pity parties. Looking back, I see that those years were harder for my husband than me. If I could say anything to women, it's not that your husband doesn't care, but as strong as men are, in some ways, they are incredibly fragile.

Micah was not just difficult in public, he was...well, embarrassing. He not only threw a fit when he didn't get his way, he would violently head bang...on anything. He even put his head through a plate glass window once. And the parenting advice was plentiful. "Give me a week with him, he'll be talking." "Are you spoiling him?" People would come right up to him and tell him to behave. And of course, there was the "friend" that love to compare my children to other kids his age that were "thriving" and "brilliant". I won't talk much more about these instances. I'd love to say that I was too tough for them to penetrate my heart, but they did, and they sting to this day.

Micah now has worked through most of his sensory issues, (he can wear helmets, tight jackets, no head banging, etc.) and if you were to observe him, you would say that besides not always understanding personal space and boundaries, he seems typical...and then...he'll talk. His speech is very, very delayed, making also his cognitive skills delayed.

Having my beautiful son has made me come to terms with many of my own issues: my temper, my judgemental attitudes, and my insecurities. I'm thankful for him. I am less likely to notice other children's behavior, and certainly not quick to judge other parents. I've learned that the last thing I ever want to do is use my children as a competitive tool, and I'm grateful for every milestone. Many days, I almost forget Micah isn't typical. And then, it will happen. A parent innocently bragging about something that their child did or said, a child performing on an instrument or singing a song. Children his age in sports. Little things like that.

Early on, I swore off playdates. At this time in my life, I wasn't surrounded by the best kind of friends. I was in a new state, and at the time, I didn't realize these women were just insecure themselves, I am very fortunate now to have a great circle. Complete trust with my child, and understanding. But as we look back now, our expectations of Micah were just too darn high, even for a typical child. We wanted him to be perfect in public. We wanted him always to be the bigger person in a situation with another child. No one could have lived up to our expectations, and I pray frequently that Micah has no recollection of just how hard on him we were. Fortunately, we wised up while he was still a toddler.

Micah is incredibly sensitive and sweet. And this makes it difficult when he's rejected by other children. Fortunately, we are blessed. The neighborhood kids here, are now, like family. This is a safe place, and everyday after school, you can catch us out in the tree house with about six boys in the yard, climbing trees, throwing sticks, and wrestling. The neighbor kids know that if they are coming to my house I'm going to let them wrestle. Micah needs that rough play, his sensory system almost begs for it.

I've still sworn off play dates, but fortunately for us, we are a playdate."


  1. Great post! I can relate to so much of what you have said. My Son acts the same way much of the time. He’s sweet, sensitive and often withdrawn. Thanks for sharing!

  2. Thank you for sharing!
    I, too, find that my husband is very sensitive and fragile about our son. He grieves the loss of our typical son differently than I do, and it is so important for us to talk about our feelings throughout this whole thing.
    We also struggle with setting expectations for Benjamin. I think we tend to set our expectations too low. We still treat him like a baby, at 2 1/2, and it's hard to think he'll ever talk or even understand us when we talk.

  3. You spoke of several powerful aspects of this journey you are on, Susanna, One had to do with the differences in the parents' struggles. The mamas throw themselves into providing all the child needs - while the father often grieves in silent isolation. Your insight is a wise challenge to spouses to reach out and hold each other close. The Ecclesiastes 4:9-12 passage Tiffany has posted is SO important - not just in friendships, but especially in those early struggles within the family unit!

    The other important piece of your reflections that I see is how God uses these life circumstances to draw His children closer to Himself. Grace and graciousness to others, patience and joy in the little things of life. A hunger to draw close to God and to be covered up in His love and grace! I've long believed that having children is SO much more about growing ME up than about me growing up my kids! This is surely made exponential in parenting kids with such unique needs as you have faced. Tiffany has been so blessed getting to see that utter life-transforming power evident in your life, Susanna! We are witnesses to God's faithfulness!

  4. wow, thanks so much for that, Sharon. Your comment touched me ;). You know, it is amazing. I learned more about God and myself during those horribly painful years, than all the good years combined. While I pray for Micah to become completely thriving and fuctional in every way, I can't say I would change anything. I don't know what kind of person I would be. The Lord is good. When the word says to embrace instruction, I never used to get it.