Imperfectly Seeking Help



I’m more likely these days to celebrate Tariku’s triumphs on this blog than I am to explore our day-to-day challenges. I’m not sure why that is. Maybe the successes are just clamoring louder to be written.

But I got an email the other day from a woman parenting a child who also has Sensory Processing Disorder and PTSD. She told me that she had combed this blog for more about our struggles and had only really found the “everything is so much better” stuff. Better than what? What was it like? Please tell me, she asked.

Things are remarkably different now than they were a few years ago; it’s true. But I don’t mean to misrepresent the situation. Here’s a little snapshot:

T rises from his pillow at 5:30 like a hummingbird who has just smoked methamphetamine. That’s how he rolls all day, until we strong-arm him into bed. He wakes up with approximately one-hundred-and-forty-three questions about cloud formations and tornadoes and Cuba and sharks and death and, and, and… He’s extremely bright and curious and hilarious, but will take almost no direction. Whether it’s baking a cake or doing math or playing a piano concerto, he knows how to do it. His favorite word is no, accompanied by an impressive eye-roll. When he gets over-stimulated, he has no sense of his body in space and very little impulse control. He literally climbs the walls. They have the scuff marks to prove it. He wants to be in control of absolutely everything, including the time and the weather. It’s sort of like living with a cross between Iggy Pop and Fidel Castro.

I love every crazy minute of my son; I truly do. Just the other night we were on the bed together and I was reading while he watched TV. He reached over and took my hand. We held hands like that, while doing our own thing, for the longest time. I swear it was one of the sweetest things that’s happened in my entire life. But I don’t want to mislead you into thinking that he suddenly turned into Shirley Temple overnight.

Much of our life is still spent negotiating therapies and school intervention. Most nights I still wake in a panic at 3am, worried for him.

In fact, this morning I was just on the phone with a new counselor, who offers some innovative therapies. I talked to her about T’s trajectory thus far.

“Did you ever try so-and-so pre-school?” she asked.

“No. We heard about it. We thought about it.”

“That’s too bad. It would have been a really good fit. Their forte is working with extremely bright children with social and emotional challenges. Maybe they could still help you with an after school group. I want you to call them.”

“I…I…I don’t remember why we didn’t. It was so confusing at the time,” is all I managed to stammer.

The rest of the conversation was encouraging. We set up an appointment for an intake. I chirped something about so excited to see what the future holds and then hung up.

I put the phone down and sat, staring at the website of the special needs pre-school he didn’t attend. We’re very happy with our school now, but it looked like it would have indeed been perfect a few years ago. And even though I had already loaded on my mascara for the day, I began to weep.

The essential thing I forgot to do. The thing thing that would have helped him. And I missed it. I failed my child.

Which sends me right down the spiral of… at what am I failing right now that I’ll have to answer for at a therapist’s office in three years?

Scott’s guru guitar teacher showed up at the house as I was in the midst of this. I answered the door and actually cried on his shoulder. I barely know the guy.

He asked me tell him what was going on. So I did.

Have I mentioned I barely know this guy?

I can’t imagine what Scott was thinking. It was truly bizarro of me. But sometimes you gotta just be where you are.

“I’m not doing enough,” I sobbed. “I’m doing the wrong things.”

“Are you willing to let that story go? “ he asked me. “Because that’s just a story you’re telling yourself.”

It’s a story I often tell myself. And it’s true I’m usually getting something wrong. It’s true there are plenty of great avenues of help that we’ll never find. But all three of us are seeking help with such hope and dedication. It’s not ever enough, but it’s our best effort. Just look at our little Iggy Pop. He’s learning. He’s making friends. He’s growing all the time. He’s a wild, white-hot ball of pure love. He’s perfect. And I will fail him many times before this gig is up. But that’s just one story. There’s another in which we’re all heroes.

I deeply relate to the desperation and confusion of the woman who wrote me the letter. This isn’t an answer at all. It’s just a story about my morning. But I hope it helps.

7 thoughts on “Imperfectly Seeking Help

  1. this posting exemplifies why i love reading your posts/ blogs/ ….appreciating your stuggles ( ability to be vulnerable,)as well as your triumphs! love what ” guitar guru” said to you….so dont look back, its ” history” and keep doing what you are doing….your best effort is a gift to tariku….who looks like a very happy boy. dont be so hard on yourself….each day is a new part of your journey of being a mom. xoxox

  2. If I had the money. The first thing I would ever do is oxygen therapy then stem cell therapy. Lots of intravenous glutathione and vitamin c infusions. In Africa. I can understand Adhd. They have hunting survival jeans to be quick on their feet so they have to be speed thinkers. See Dr Tynan book on personality type. Homeopathic adrenalin may work at 30C and also chamomile and drops of lavender oil. What do you think about pathological demand avoidance syndrome? Check out norSaca Website.

  3. Your post took me back to my trying times with my two ADD sons. Both smart, creative, with wheels instead of legs. Both are friendly young adults, in the arts and good men.
    I love that you say “…it’s our best effort.” We don’t have all the answers, there is no total control, and we do the best we can for our children.
    You got it right when you said you seek help with hope and dedication; who could ask for better parents?

  4. I don’t comment much and I’ve never emailed you (though I think I tried to once… can’t remember what went wrong there), but I’ve been reading for a few (or four? gosh) years now and our boys are cut from the same cloth. They were even adopted at the same age, though you guys are two years further down the road. There have been times that I have held on to your family’s story for dear life. When I realized two years in that we hadn’t had the best resources to help us parent him and it was so easy to blame all of his struggles on our failures… I would remember that you and Scott were kick ass therapeutic parents from the get-go (deny it or don’t but it seems true) and that T still struggled. When he got kicked out of his first preschool, I took heart knowing that you went through that several times and eventually he was able to succeed. (School is going well for us right now too.) When I watched your TEDTalk and realized my son probably has PTSD that was never diagnosed and how oddly comforting and validating that was for me.

    And this? – “I will fail him many times before this gig is up. But that’s just one story. There’s another in which we’re all heroes.” That’ll carry me awhile longer.


  5. Great job on this post. I’m right there with you. The only thing I can say is that when you get it right – tell yourself, “we really got it right this time”, and then celebrate it. It’s insanely hard otherwise because you forget how much you are doing right. The other thing I’ve learned is that our main job as parents is to find a way to support and make our kids feel good about themselves. I’ve heard over and over again – “emphasize their strengths” and keep chipping away at the challenges. I really believe this now – but it took me some time to recognize the deep wisdom. Also – you cannot be therapist, teacher and doctor- you are parents and you should remember to be just that. Clearly you are doing an excellent job!

  6. Oh, Jillian… I get this. I really, really do. The phone calls and the evaluations and the “what ifs” going forward when you look at what could be and the “what ifs” when you look back at what should/could have been — all of it. So paralyzing and frightening and it feels like you’re bearing the weight of the world on your shoulders. And it can be exhausting playing Atlas, can’t it? And we know in our hearts that we are fighting for our kids, that we are doing everything we know how to, we hear it from other mothers in the endless “I don’t know how you do it” refrains, but we don’t feel that way. Our hindsight seems to be 20/20, but we beat ourselves up for not having gotten glasses back when we needed the crystal clarity we have since found. I have no sage advice like that which you received — all I can offer is whatever comfort you might glean from knowing that I am right there with you, another “Mother Atlas”, trying not to be swallowed up by the “What ifs”.

  7. I am currently in this situation right now with my son! Bright, curious, loving, energetic…. but with some significant behavioral issues. I don’t know what to do as his mom. Evaluations and counselors and school meetings and behavior charts and researching sensory disorders and diet modifications and screen time limits and extra school work and, and, and… I sit and think constantly am I doing enough for him now so that this won’t continue to be his life in 3 years.

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