Saturday, August 28, 2010

it changes everything, it changes nothing

Apologies for being such a reluctant blogger. It's a family first home, the House of D, and we've been living the transition high life since school started on the 16th. Oh, change. Isn't it fun? For anyone? Anyone?

This post has been in editing for almost a week. It is the single most difficult post I've written in five years of blogging. For those of you who know me IRL, please take this into account the next time we talk.

For four years, I've been loudly and proactively advocating for my kids' needs based on their genetic or congenital condition/s. It's one of the many activities I signed up for when I chose to adopt kids with known medical needs. In that time, I've also spent a fair amount of energy trying to educate our community (family, friends, schools) about the impact of institutionalized care and displacement/s on children — my children. The day my blondes were declared legally blind was a relief because the diagnoses meant that we could receive more, and more directed, support from our school district in optimizing their learning environments.

But, PTSD? That's been difficult to approach. For whatever reason, having my child declared disordered by triggers that mimic pre-verbal stresses has me waffling. Even here, you've read that we will/will not be seeking treatment specific for PTSD.

We will. We have started the ball rolling with an adoption-medicine clinic nearby. During the initial conversation I was almost willing the doctor to say, "Oh, that's nothing. Just feed him more fiber." But, she didn't. She agreed with the therapist we've been seeing since early last year, that it's time to move into true diagnosis so that we can create a more supportive environment for my Boy. For his safety, and for ours.

It was unnerving to say out loud what I'd been thinking for months: Maybe my son would be better suited for our school's Special Day Class. Whatever it looks like, we hope to have more support from the school in creating a learning environment that fits his needs beyond speech therapy.

So, I say it: I want my kid to have another label attached to his file. Adopted. Cleft Affected. Foster Care Survivor. Chinese. And, now, PTSD (and, perhaps, SPD).

He's a joyful soul, our Boy, a delight to know and to love. But, in terms of creating relationships it's as if he's been asked to build a new house and every day he goes at it with a broken hammer. Each day he uses the only tools he has, and they aren't working. He isn't connecting to friends, he isn't finding joy in the learning process. The more he's sidelined by the process, the more violent his reactions to the triggers of alienation and abandonment. If we don't stop it now, he may not be able to complete a reasonable education. If he doesn't find a way around the triggers, he cannot have an honest relationship. Even with us. (Dang, it hurt to write that.)

On Monday, I'll call the first referral from the adoption-medicine clinic. (Coincidentally, this man's office is down the street from my mom's house.) Then it's the rest of our lives. The rest of our lives with a boy who desperately wants to connect but can't do it healthfully.

Will this change everything? Will the small group of friends and family who have stuck with us through our process still be with us after the diagnosis?

Will it change nothing? Will everyone understand that this is a battle internal to our Boy and its impact mostly internal to our family?

If I label him, will that stop parents from letting their children be his friend? Because, I don't think our hearts could handle that. At least, not right now.

And I guess that's the point.


Mei Mei Journal said...

One of our daughters is in therapy for PTSD and OT for SPD. I am very happy to say it is helping. I suspect you will find what I have. Your friends and family will be unphased by the labels. If they have stood by through some difficult behaviors the diagnoses won't be an issue.

Juliette said...

I don't know much about PTSD. But I think from the bottom of my heart you are doing the right thing. If professionals and resources are available and you can get support, go for it!

If there are indeed your friends, the new label given to your son should not change anything.

LynnieB said...

I will say it again and again. You are an amazing parent and love your children with a fierceness that is refreshing.

On one hand it sucks to give our children yet another label but if that is what it takes to get them the help they need, so be it.

Standing beside you from far away. Wish I was there to give you a hug.

Diane said...

‘If he doesn't find a way around the triggers, he cannot have an honest relationship. Even with us. (Dang, it hurt to write that.)’

I know what it feels like to live with this thought and reality. I have a daughter who thrives in academics- honor roll and all. But, socially, and within our family we deal with a much different scenario. Do I hope for my child to have straight As or a child who can have an honest relationship? The answer is the later. I work my tushy off to make that hope come to fruition.

We have made it so far but there is still a long road stretched ahead.

Because my daughter excels in school I have been able to avoid the labels. But, if I needed them to gain access to support- bring them on. It is completely up to you how you...and to whom you...dispense the labels.

One of my best friend’s adopted daughter was just diagnosed with a plethora of learning disabilities- including dyslexia and PTSD. My friend was very distraught and concerned about the labels being like a ceiling above her daughter. The labels are NOT a ceiling but just stairs to limits.

One step at a time.

Yoli said...

You are not alone and no real friend will ever turn their back on you. I am here with you. Don't feel defeated before you have started. This might be exactly what he needs. Cross bridges one by one.

Third Mom said...

Mama D, you will make the right decisions and do the best for your Boy, whatever those decisions may be. Having read you here, and having met you and your family IRL, I know that will be the case. Your intelligence, sensitivity and common sense are a combination that cannot and will not fail your son.

Trust yourself.

Sending a supportive (((hug)))

bbmomof2boys said...

Labels - good? bad? Yes, they are good because they get our kids the services they need. When Little T was diagnosed with apraxia they said "We don't want to put that label on her because she's smart and understands everything, she just isn't talking." I said PUT IT ON!!! That was the only way I could get her the services she needed! Will this "label" follow her through school? Yep, probably though we are praying that she'll start talking. But - that's ok! You are so so right - Labels are NOT a ceiling but stairs to climb with no limits!!!


Raina said...

The Boy is beautiful, his heart is beautiful. You do whatever you must to protect that heart of his. We, your friends, will be standing by, waiting to help in whatever way you need us. I wish I were closer. And, don't forget to take care of yourself.