I see you . . . now

I am the mother of a child with special needs. There. I said it. His name is Seth. When you meet Seth, what you see is a pretty darn cute five-year old boy who wears glasses. If you didn't know, you might assume that like many school-aged children, he is far-sighted and got put into glasses in advance of starting school. Not so.

Instead, my little man has the following list of needs:
Hypo-plastic optic nerves
Septo-optic dysplasia
Prone to seizures
Malformation of his left (or right) cortex in his brain
Global developmental delays
Legally blind (severely near-sighted)
Being monitored for precocious puberty
Strabismus
Nystagmus
New-found obsessive compulsive behaviors
Sensory Processing Disorder
And possibly on the spectrum . . . the Asperger's side of the spectrum

All of this drives us to
Occupational therapy (three times a week privately, and two times a week at school)
Physical therapy
Speech therapy
Neurologists
Endocrinologists
Ophthalmologists
Optometrists
And, as my friend Jenny says, the hippie doctor

No, I'm not hoping you will feel sorry for me, and certainly not for him {although, we'll take your prayers}. I'm sharing this because it has changed the way I look at parenting, at other children, and, in particular, at children who have special needs and the parents who love them.

I've already confessed to being a control freak, and I stand by that admission. My learnings now, however, are about being a control freak when you cannot. Because you probably know something that I am still learning: You cannot control your children, especially those children with special needs. Duh . . . .

The harder things get with my "healthy infant" adoption (yea, that's Seth), the more my eyes have opened to the families, and mothers in particular, who are struggling with children who are different. Some of these needs are obvious from looking at a child or after a brief interaction. But many, many others are things we cannot see and would not know absent someone telling you. That's where my child falls.

While his glasses (at a young age) are a give-away to some educators or medical professionals, most people don't know upon laying eyes on him that Seth has what I affectionately call "issues." And yet, he does.

Here's an example of a very common exchange in our house. This morning, Seth melted down because I refused to allow him to take a paper airplane to school:

It's a toy. We do not take toys to school and you know that.

"It's not a toy," he retorts, "It's paper." {commence epic FIT}

And so the perseverations go. {I fully expect that we will still be discussing this injustice when I get home today...}

Here's another: I took Seth to see his OT recently. When we arrived, there were a lot of children in the waiting room. Seth walked in, grabbed an available toy, and positioned himself tightly underneath the chairs in the waiting room. On the floor. Awesome. When Miss Mary came out, my head was about to pop off as I pointed her to Seth's hiding spot. "Whoa, whoa, whoa," Mary said, as she pulled me aside:

"This environment is completely overwhelming to Seth. There are many people and lots of loud noises. Of course he is hiding. Let him be. And in the future, wait for me in this quiet room."

See there? Me. Learning.

At school, for the first forever week or two, Seth insisted on sitting on the "S" on the circle rug . . . even to the point of pushing others off of it or standing and pacing when he could not. When I'm rational, I get this. He is trying to control something . . . anything . . . in an otherwise very out of control environment, for him.

But I am not often rational when it comes to my kids (aarugh?!?!?)

Or there are the loud noises that Seth makes whenever he is meeting someone new or has to go to a new, different, exciting, location. LOUD. Meaningless. Annoying. Embarrassing.

All of this and a million other examples led me to seek help. A few weeks ago when I was on the brink of total and complete destruction a breakdown, Seth and I visited his pediatrician to discuss the very bad behavior transition to school . . . and terrible parenting . . . of my newest elementary student. Here's the nugget I got from that one:

"MOM. When children are stressed, anxious, over-whelmed, over-burdened and just plan max'd out, do you think they come to you and say, 'Hi, Mom. I'm stressed. I need help.' Um, no. They go off the freakin' reservation! {okay, maybe those were MY words} This is not about you. This is SETH, crying out for a break and for HELP."

And just like that, I was back to not being the worst mother in the history of the world. {At least for that day}

These days at church, Seth has a dedicated volunteer assigned to him.  Did you hear that?  Dedicated volunteer.  How completely mortifying humiliating amazing and humbling is that? Yes, I'm thankful.  We needed it.  {Otherwise, I was resigning from church and maybe life}

So, parents of special needs children? I see you. I know you. I "know" without you telling me {now, finally}. I see your child raging on the airplane. I watch your child spin at the park. I see your embarrassed face in the restaurant. I know your broken heart. I sense your desperation. I know your need for respite. I experience your exhaustion. I am walking this road with you. Lord forgive me for not knowing or understanding until I lived it.

And for the record, I wouldn't change it for the world.