Saturday, February 11, 2012

GBE2 Challenge: Upset

I'll tell you one thing that just does not sit well with me, and that is when our older son is upset.

I'm definitely not playing favorites. I don't like our younger son to be upset, either. But, when he is, I am at least able to have some form of conversation with Little Brother--even if it is very basic. With that child, I know, somehow, I can work my mommy magic and usually make things ok in the end.

Mommy magic doesn't always work on our older son.

In fact, mommy magic was sketchy at best from the very start. In the newborn days, I did everything I was "supposed" to do: I fed. I burped. I swaddled. I rocked. I held him close. I put my skin to his, cheek to cheek, so that he would learn the feel of his mama and be comforted by me.

What I didn't know what that everything I fed him was upsetting a gastric system that was intolerant of what was going into it. When my fingers patted his back in an effort to burp him, his disregulated sensory system felt pain with my touch. When I swaddled him, he felt trapped instead of comforted. Instead of feeling soothed by rocking, he felt sick. He didn't want to be close to me. People scared him. Touch hurt him.

Everything I was "supposed" to do was wrong. Everything I did upset this child.

It took me years to understand why he didn't trust the world. It took me years to understand him. Even after his autism diagnosis at two years old, we didn't fully understand that just about everything in his world offended him, this child who could not even tolerate more than two adults in the room with him at a time.

Sights, sounds, touch. His food. Our demands. The unpredictable. These are the things in life that upset my spectrum child. They propelled him to walk at an early age, and, before we knew it, he was running--running in full blown flight mode away from life.

"He's spirited," we were told as I dashed in and out of rooms after our bolting child.

"That boy is a genius! His brain never quits," others would say as I attempted to quiet our proverbial bull in the china shop.

"The most active children lead to the most productive adults," still more would explain while they all sat politely with their polite little babies, and I was a sweaty exhausted mess running after our Energizer Bunny.

How I wish I had known that his over-activity was actually anxiety, a cry for help when he had no language to tell me otherwise.

Oh, he tried to tell me. He cried. He cried and he cried and he cried. The child was simply never happy. Ever. There was no language. No pointing. No level of engagement to explain the crying. There was simply CRYING.

A newborn crying...

...turned into a young baby crying...

...who then became a toddler crying...

...who grew into a crying preschooler.

Showing that he was "upset" seemed to be his best form of communication, and that fact tied my stomach up in knots. For, as our nonverbal infant grew, his cries became less about his sensory pain or his gastric pain and more about the emotional pain of a grade schooler unable to express his feelings.

I simply had no idea. My mommy magic was completely defunct.

"It gets easier," I was told by more experienced moms. "Give him a chance to grow."

But I was not convinced: not our kid. Known for being one of the more challenging cases in our area, he just didn't seem to develop the way anyone had told us he would. I didn't hold my breath.

Instead, I just aimed my nose to the floor and trudged forward. Challenge after challenge, crisis after crisis, we chipped away at whatever obtacle lie before us. And, if I stop to think about it, I suspect that is what he had been doing all along.

Life works so much better when you feel as though you are part of a team.

Today, he is ten years old, and, yes, it is a bit easier. Time has afforded us both maturity and skill. But, even still, his desires have developed well beyond his language, and sometimes, he bursts into a mournful cry over something we both know I will not be able to understand right now.

Oh, how I hope for greater things in his future!


  1. Wow, I did not know about how autism affected him as an infant and how a mother's good intentions can be perceived by an autistic child. Good post.

    1. Neither did we! I would hope that there is more awareness about autism today so that more young children and their parents don't have to suffer like we did.

      Thanks for reading!!

  2. Aren't you just amazed when you look back this way? All you have been through and all you have learned and mostly ALL he has grown and developed? I am just speechless when I read these "looking back" posts you do so well. Where you were and where you are just way more years apart than the reality.
    I am positive your future holds many new developments to rejoice over with your anxiety filled son. He'll find a way or you will.

    1. Well, I'm amazed that we can offer any sort of understanding to ANYONE, really, because parenting has been very difficult. And, I imagine it will continue to be as we are always facing new challenges. However, it's always easy to be retrospective, isn't it?

      If any parent is reading these words and is in those early days right now, I just want them to know that I understand them. It isn't an easy road to travel.

      Thanks for the support!

  3. every time i read one of your posts i am like sitting fwd, eyes winced, teeth gritting, why? I feel it..i know minutely the pain and frustration. Back in my investigative days had to transport a child with autism. Met mom, she was so frustrated and honestly, i felt a bit of fear. Was praying i wouldn't "trigger" the child, payed he wouldn't see me as a threat and yes..they DID NOT LIKE TO BE TOUCHED. It was painful for him to gaze even at me. Today i understand..and totally believe their parents are hand picked SAINTS.

    Its so......humbling...subversive, it hurts to think right?

    Yes......all your pain, love, perseverance is helping you and others. (another chapter completed my friend)

    1. Oh, gosh, I can only imagine how hyper-sensitive that child was given the situation you were in. So glad you were sensitive enough to NOT set him off!!

      You may remember that our son had a seizure early this fall. We called 911, and I rode with him in the ambulance to the ER. This area has a notable autistic population, and we've even had first responder training for autism, but, still, I didn't feel much awareness. I'm glad our son was wiped out and asleep from the seizure so that I could take the time to talk to them about his needs. In turn, they warned the ER before unloading him/us in order to make the entry into the hospital a bit easier.

      I think our son has had a pretty tough life. It would be nice if the worst is behind him, and, I hope that by sharing his stories, we can ease the pain of others.

      Thanks for everything, Brenda!

  4. Poor old you! We have brought up a grandson on the spectrum as you described it. Our boy had been diagnosed as ADHD, OD and CD at six years old. He had severe behavioural and learning problems.And a minor intellectual handicap. He came to us at aged eight because his stepfather couldn't, wouldn't or whatever, handle him. he physically maltreated him.

    And so the difficult journey through life began with this team of grandparents and grandson. At the age of 14 years he was expelled from school - at 15 he developed schizophrenia.

    But something we have picked up all these years later is something you picked up with your boy - anxiety! We now know he got all anxious before going to school. he would pace our hallway before it was time to go to school.

    1. Bless you for taking on this task! It isn't easy, and it could take years before you see a noted improvement...

      As a parent of special needs, I've met so many other great parents--all dealing with varying needs in their families. Mental illness in children is difficult to understand as they are growing and as hormones kick in. UGH! I don't look forward to homeones!!! We all constantly watch our children and question, question and question again. Trials of medication often make behaviors worse before they get better. But KEEP UP THE FIGHT!!! It absolutely CAN get better!!! Do you have other caretakers around you to share with and offer support? If not, please let me know. I have friends that would be happy to connect with you.

  5. It requires a tremendous amount of patience to deal with a child that is outside the spectrum of expected norms. The behaviour issues can be tiring, and leave a person feeling drained, and ineffective. You do so well with him, that it makes me smile each time I read your blog. No matter what you are faced with, you seem to rise, like cream, to the top of the situation.

    Awesome work, simply awesome.

    1. Thank you. He's my baby. I think any mom can understand that, right?

      I appreciate your support!

  6. I don't know if you get tired of hearing how impressed we all are with the way you handle your journey, but I can't seem to stop telling you. I've heard the self-doubt you sometimes express, and the frustration at always playing catch-up to the latest stage/challenge. The thing is, you do it, whatever the needed it is. You take a deep breath and you dig in. I'll tell you, for a woman in hot heels, you sure do run faster, stronger, and better than most anyone I know in tennies. ♥

  7. Just bless you all...I don't know what else to say but this post touched my heart...smiles

    1. What a lovely thing to say. Thank you so much!

  8. I think you are one amazing lady and one smart cookie. Because of that I am giving you an award. Please stop by when you can to pick up your award!


  9. I taught kids on the autistic spectrum for three years. Every day was a challenge but I knew I could always go home after school and take the time I needed to renew my energy and commitment. I hope that you have applied for, and are getting, some respite time. I wish your blog had been around when I was teaching, so that I could have recommended it to parents of my students. You are an inspiration. Hang in there!

  10. Thank you for reading. You pay me a very high compliment to say, as a teacher, you would have used my words as a resource for your families. Thank you. We can all benefit from those who have similar experiences.

    Our children have profoundly affected my husband's and my lives, and it has not been an easy road to travel. I hope that this blog can give parents similarly situated a place to go where they can find a kinship in expressing what is both beautiful and also not-so-beautiful about life with special needs.