Wordless Wednesday

Like all guys,

Kiel loves his Woody.

tied together

Today was one of those days with Noah that was perfect.

He was absolutely delightful to be with. Accepting. Patient. Helpful.

We had a developmental pediatrician appointment this morning, and they were running an hour late. Noah didn't fuss, and he asked nicely if he could go play fuse ball in the lobby up front, so he and Rich went to play up there while I waited. When the doctor was ready for us he came right back when asked.

He interacted appropriately with the doctors, answered questions, was helpful. Just all around awesomeness! Compared to some of the appointments this one was amazing.

The plan was to take him to school after the appointment, but it went so long that I didn't have time to get him to school and get myself to an appointment that I had. So Noah went with me. He waited in the lobby while I was in the room. I let him play Angry Birds on the phone and the receptionist said he never moved. He even answered a call for me and told them I was in seeing a foot doctor. He had no idea who it was that called though. He just didn't want them to think I was ignoring them.

After that we went to McD's for lunch, where again, he was awesome. Then we ran some errands and picked Kiel up from daycare.

Days like this are what keep us going. This is what stays in our memory, and the negative event are less likely to pop up when we have a new positive one to work from.

Days like this prove to me how tied my emotions are into his.

Another type of loss

I can't even begin to express how lucky I am to have my "Soul Sisters" behind me. The amount of support and love they have given me is immeasurable. I have no doubt that we would not be moving forward with Noah as we are if I had not met them.

One of the best sources of support for our group is that we have a private place to chat with each other. The only place many of us can really let it all out and say the hard stuff, that "normal" people would not understand.

Everyone there is struggling with their kids. Kids that are dealing with developmental delays and mental illness. So many different diagnoses: RAD, ADHD, bipolar disorder, schizophrenia, PTSD, FASD, ASD, PDD, etc. etc. All of the children hurt by trauma of some type.

We are families that are struggling to keep it together. That are fighting to stay safe. That are fighting to find services for our children. That are fighting to keep even the smallest bit of hope alive.

Many of the women I have met have lost relationships during their journey. Relationships with friends, coworkers, neighbors, parents, brothers and sisters, spouses.

It's painful, and isolating. And reinforces already complex feelings of failure because we haven't been able to "fix" our children.

And in some ways we kind of understand why these relationships have broken. Certainly if we don't understand our own children, how can we expect others too? So many of us have struggled for years trying to find the correct diagnoses, trying to find the right help. Reading book after book. Scouring the Internet for resources. Trying over and over again, and seeing little if anything help change our children's behaviors.

So we think we have failed. Again. And when our friends or family pull back, that reinforces the feelings of failure.

We know that "typical" parenting techniques don't work with our children. Believe me, I think we have all tried them. Of course we have tried them. Because that's what we hear from other parents, and even from professionals.

We joke together about how many times "sticker charts" or "picture schedules" have been suggested. How many times we have been told to use "natural consequences" and "time outs." Or the old school thoughts on spanking.

How often have we heard that "you let your child get away it." "If you were firmer with her she wouldn't do that." "You need to let him know who is the boss." "You let him run the show."

How often is it implied that we are the reason our children are "fucked up."

How often do we feel judged, and wonder if maybe "they" are right. 

At a minimum our kids behaviors are annoying and frustrating, at their worst they are frightening. 

So how can we blame others if they stay away. If they don't want to have our children around them?

Truth be told, I can't blame them. Yet, it doesn't mean we don't need our family and friends. It doesn't mean that it isn't very painful when those relationships are lost, whether the bonds are cut by them or by us.

It's not our children's fault that they are damaged. It's not our fault as their parents either.

It's ironic actually, that so many of us are trying to teach our kids what love is, and what family is, and how to trust others, yet we are lacking that in our own relationships with our own families.

Moving forward

I'm still moving between anger and sadness and doing. Wash, rinse, and repeat.

I think I forgot to mention fear yesterday. The fear that I won't be enough for Noah. The fear that nothing will be enough for him. The fear that he will be a statistic no matter what we do.

And also the fear that if we can't learn to manage his rages in the next several years, especially important before he hits puberty and hormones start. Well, shoot me now! There has to be a line in the sand that we will not allow him to cross. We haven't set that line yet. I'm not ready to set that line yet. But at some point we may need to give it serious thought.

Thinking like that just kills me.

But beyond the fear, today I am in "do" mode. This is the time in the cycle when I am at my best.

I can make doctor appointments, find my way into specialists, research the current treatments, and read book after book. And yes Noah's elementary school principal, I just might have a 45 minute Power Point presentation for you again next fall. Which I rocked! Despite your suckage.

I do "do" well. We have three specialists appointments coming up in the next two weeks (developmental peds, International Adoption Health Clinic, plus the new psychiatrist), plus we have an appointment with an expert in FASD.

The ball is rolling to get in with the neuropsych department at CHOP so I just need to wait. Our IA doctor submitted that referral.

Two of my Orlando sisters sent me books. Thanks Laurie and Torina!

And Laurie came down with her husband and two kids (one RAD, one FASD and bipolar) Saturday to go to the zoo with us and give us some moral support.

Laurie is amazing and has been a huge support for me. I have to give her full credit for getting me on this path.

Obviously, I don't want to be on this path, but we are. And the path seems to make sense. I hope it will help us figure out who Noah is. If we can find his strengths and weaknesses now we can learn how to help him use them best.

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I like that I am writing again. I missed it. And I certainly needed it. 


I'm starting to question the title of my blog though. Mommy Needs Therapy or a Bottle of Wine.  Is that still appropriate do you think?  Or am I just being extra sensitive right now? Any other thoughts?                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    

Snapshots in tears

I imagine everyone has moments in time that are permanently etched in their memories. Snapshots. Perfect memories. Memories that are so strong you still have every detail of them.

 The first time I realized people actually had sex on purpose.

The first time I realized that I just might kick ass academically in high school.

My first real make-out session.

My first break up.

Finding out I had passed the pharmacy boards.

Chatting with Rich for the first time.

The visit where he got confused with the time he was supposed to pick me up from the airport and was two hours late, and I was convinced he didn't love me anymore.

Opening and reading the email that told us a baby was waiting for us in Russia.

The doctor telling us he had embryos he would like us to have.

Seeing that first positive pregnancy test.

And now, I will always remember that moment, at 3:05pm on Tuesday, May 24th, 2011, when Rich called to tell me that we had the results from Noah's MRI. Results that showed brain damage consistent with fetal alcohol exposure.

I cried for the rest of the day. I couldn't stop the tears from coming. I felt like our lives had been knocked completely off center. I was devastated. I still am.

Noah has a fetal alcohol spectrum disorder (FASD). A completely preventable birth defect caused by ingestion of alcohol by his birth mother when she was pregnant with him.

In the two weeks since we received the MRI results my emotions have moved from devastation to pissed off to relief that we finally have an answer that makes sense to anger to sadness and back again.

Devastation for the permanence of FASD and what this means for Noah and his future.

Pissed off at his birth mother that she did this to Noah.

Relieved that we may finally be on the right path to figure out how to best help him and understand him.

Angry that it took eight years to figure this out. That no one ever suggested we test him for FASD. That when I look at pictures of him as an infant and toddler I see the physical features in his face - subtle yes, and not at all detracting from how gorgeous he was and is, but yes, still there.

I'm angry tonight because we lost eight years of therapy and interventions that could have been targeted towards a brain that was damaged, instead of floundering around as we did guessing and hoping something would work, when really, nothing we did worked. Angry that we spent years thinking we were bad parents, believing others when they said we were making Noah worse, even though in our hearts we knew we were doing everything we could.

Angry that Noah is always going to struggle.

And sad, so sad, that my child, the child of my heart, was hurt. And that no matter how much I love him, and how much I fight for him, and how much I try, I can't fix that damage. All I can do is try to help him learn how to make the most of what he does have. And continue to fight for him. And always be here for him.

I still have tears to shed. I still have anger to work through. I still have knowledge to gain. I think though, that we are finally on the right path.

I will have more to share soon. Hopefully more information, with less emotional drama in the telling.

red handed

One wall of the karate studio is entirely mirrored.

Today after Noah's class he didn't come to me like he usually does, so I was looking around for him as I spoke with another mom.

In the mirror I saw him in the little alcove by the front door, where they have a cooler full of water and Gatorade type drinks that they sell for a dollar.

Noah was crouched down in front of it with the door open. I watch as he closes the door and picks up his shoes. I'm curious, but don't see him with a water bottle in hand.

I say his name.

He freezes, then dives into the corner to hide behind a shelving rack. A few seconds later he pops his head up and looks around. For the life of him he can't figure out how I can see what he is doing.

So he crouches down again and I see the refrigerator door open. I see his hands go in, and his head, but can't quite see what he is doing.

Again, I say his name.

Again, he freezes, and dives into the corner. He looks around. He knows I am still in the same spot. He still can't figure out how I know!

He walks over to me and I asked him if he was drinking the water. Hoping he isn't stupid enough to say no, considering there is a red ring around his mouth from the red sports drink he was sneaking.

This time he was honest. I think he knew I could see, even if he wasn't sure quite how that was happening.

He tried to tell me he put a dollar in the can, but couldn't quite come up with how the dollar came into his possession other than some lame excuse about it jumping into his pocket.

His response? Well, I did it last week and no one stopped me.

*sigh*

*head bang*

*sigh*

I removed the half empty bottle of water from the fridge and threw it away. Noah and I had a long talk on the way home about stealing and how what he was doing was stealing from his karate teacher, someone he respects, and that made it even worse.

He couldn't quite get past the fact that he did it before and didn't get in trouble, so why is he getting in trouble now?

I also tried to explain that it upset me even more because he tried to lie to me about it, and to top it off, he chose a red drink, knowing he can't have red food dye.

So I had to give him the "I'm disappointed that you put something in your body that you know does bad things to your brain" bit.

When we got home he had to write an apology note to the instructor and offer to help him do something in the studio to make up for the water/drinks that he stole.

I don't know if this is the right response, but it was all I could come up with today.

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I know I have been gone for a long time. I hope to make that up to all of you soon. I do have much to tell you, but some of it is difficult and that is what is holding me back. Soon, very soon I will be back here on a more regularly irregular schedule. Miss you!