Wednesday, June 11, 2014

At the Edge of the Parenting Abyss

"Standing at the edge of a cliff, dodging objects sailing through the air that would knock me into the abyss," would be the honest answer when asked how I am. Instead, I smile brightly and give a cheery, "Just fine, and you?"

No one really wants to hear the truth and frankly, who has the time? We're all so busy running to and fro just trying to keep up. If someone did stop and really ask, I'd just burst into tears anyway. 

Things are not okay, actually. 

This sweet, wonderful, chosen child of mine is really a bit of a terror. 

We are out of our parenting depths. Behaviors are increasing. Throwing, pinching, hitting, spitting, biting are becoming the norm, not the exception. The randomness of the attacks are disconcerting and alarming to say the least, leaving us all on edge, but the assaults are constant. This is the text from Shawn this morning when we were checking in with each other:

I cringe to see my youngest cower when she sees her brother holding a solid object, rightly suspecting she's the likely target. I hear my older children mirror my own frustration after getting pinched for the hundredth time. 

I'm saddened to see this bright little boy retreat somewhere into himself in attempt to cope with the overwhelming world around him. I hate to see the confusion that crosses his face when someone reacts in anger after he hurts them. 
Worse, I hate to see his huge grin and hear his laughter when someone cries as a result of the pain he's inflicted. I'm at a loss as to how to respond to that. How do you explain to a five-year-old that his little brother didn't mean to hurt him and is not really laughing at him...when it sure looks like he did and is? 

Due to his wandering tendencies, we are constantly on alert, fearing that someone will forget and leave a door ajar or a gate open. Because of the kids playing outside all the time in the warm summer months, we are already becoming immune to the sound of the door alarms. 

I would like to say that it's just a matter of time before he takes advantage of an open door and wanders away but, unfortunately, it's already occurred. That is a terror no parent wants to experience. While he was returned to us safe, the nightmares of a much different outcome have continued almost nightly and peaceful sleep eludes me.

The constant anxiety with an occasional burst of adrenaline due to a flying object is taking a toll. 

We love this little guy. Some of these behaviors are actually developmentally appropriate. He came home at three-and-a-half-years-old acting very much the infant. Now, at almost five, he more closely resembles a defiant toddler, which shows he is making progress. Which is wonderful (if exhausting for us)! We are so proud of him! 

But there is a definite neurological component which has always been present, but is becoming unmanageable with our current bag of tricks. We decided initially, while we suspected autism, that we would not pursue a dual diagnosis of Down syndrome and ASD (autism spectrum disorder) because he was already getting therapies and developmental preschool and it really wouldn't change anything. 

However, as behaviors have increased and it is clear we are out of our league, we have scheduled an autism evaluation for him the end of this month. We have discovered that there are more services available to him if he actually has the ASD diagnosis, as well as more support for us. We want to help him as much as possible and we want as many tools in our belt as we can get. 

We also ordered this gps tracking device which allows us to establish a perimeter and, if he breaches it, will send alerts to our phones. If he should ever become lost, we can find him via gps, as well. Given there is a special tool needed to remove the device from his wrist, we're hopeful our little houdini boy can't escape it, but we'll see. 

In all honesty, it's tempting to feel like a big fat parenting failure. Pride has a way of making you feel like you should be able to figure it out and accuses...

  • If you researched hard enough, you would be able to find the answers on your own.
  • If you were patient enough, you wouldn't get frustrated.
  • If you were paying close enough attention, you wouldn't have lost your own child.
  • If you were enough, none of this would be happening.
The truth is none of us is enough. Sometimes this special needs road is hard and we need help. I'm so thankful for the fellow parents on this journey who have been willing to share the ugly. Without them, I would be much less willing to have grace for myself and would be tempted to wallow in guilt and sink into the abyss in which I'm dangerously close to falling (Not that there hasn't been some guilt-wallowing, mind you.)

We feel hopeful that we are moving in the right direction to make positive changes that will benefit all of us to decrease stress, bring more peace, and help us take the best care of our precious Serb. 

Time will tell. 


  1. Oh Tara, I am so sorry this is happening. And I know, completely know, what you are going through because my Tsunami is just like you described Bo to be.

    We have an ABA therapist who just finished her observations and told us that Kimani's siblings are afraid of her (which we already knew, I guess.) She will throw & break everything she can reach, and she is agile and fast. She is into slapping and hammer kicking, as well as biting and hair pulling and pushing. But the worst is when she picks up something, to see all my other kids scatter... I feel so bad for them and for her. And yeah, then she laughs this wild laugh, or pouts if you correct her. Lately she has started slamming her own head into the wall or floor when she is mad. Or sometimes she just screeches, "Mad, mad, mad, mad" over and over, and it breaks my heart.

    What we are thinking is that maybe she wants their attention but had no idea how to interact and communicate with them. She really has no language, and no play skills. So, she gets their attention anyway she can and then she gets mad because they are running away or yelling at her. Our plan now is to structure play sessions where we try to facilitate interaction between her and her sibs with no distractions. It is a little hard because Masha and Autumn don't get what we are all trying to do, but the boys do and they are helping with it a lot. We are hoping she will learn how to get positive attention from them.

    But, truth be told, I am scared. She will be 6 this month. She grows bigger and stronger, and more aggressive every week. I do not even allow myself to picture the future. Today, I think about today, and what we can do today to try to help her.

    And we got in-home respite as well as a PCA. Having a person dedicated to one-on-one with her has helped us all cope.

    I wish you peace, answers, patience, and relief. {{hugs}}

    1. I have so appreciated your honesty about your struggles on the journey with Kimani. It has been a real encouragement to me! Your love for her shines through and your tenacity to seek and push for answers fuels my own with Bo.

      I've seen that attention-seeking that you're talking about. I just recognized it as such yesterday. I think that is such a great idea about the 1:1 play/interaction time! We will have to schedule that in our day. I know this kid thrives on structure, something we are decidedly lacking around here.

      Thank you for the support...really!

  2. Oh I have SO been there! Angela went through several years when we were sure she had Autism. And it could very well be that Bo does. But it is a difficult road, I know. Angela can still be very difficult, and now at 18 you can't just move her when you need her moved.

  3. Can I just say that you are such an inspiration to me. I just found out the other day how many children you have. I was talking to Jennifer (my daughter) and I saw a picture of your how family. (beautiful) You and your husband are doing a great job. I will pray for guidance with Bo. God knows you heart and will help you work this all out. Right now it is overwelming. But take heart God knows what is going on with you and Bo and the love you have for him. He will provide for you all. It might not be tomorrow but it will come. prayers!

  4. Thinking of you with love and hope, Tara.