Every day the wonderful happens…

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Peeling the Onion October 5, 2010

Filed under: Uncategorized — Elizabeth @ 4:14 PM

Yesterday I went to see the therapist at our local International Adoption Clinic. I have spoken with her over the phone about some concerns I have had, and I decided it might be good if I could go speak with her in person for some advice.

Basically, I have had a nagging feeling that there was something “not right” going on with Matthew. You see, during the adjustment period, it is impossible to tell what your child is really like. They are going through all sorts of changes and emotions and it takes a really long time before their true personality comes through.

In the past few months, I feel like I am finally able to begin sorting through the layers of my child. For instance, last night, we were playing outside and he got mad about something. He screamed right in my face—NO! That was PURE three year old right there. It didn’t confuse me or anger me (truth be told, I almost laughed out loud). I was actually relieved to see this angry outburst in a totally justified (justified in that a 3-year old is ticked off because he’s not getting his way) situation.

So the first layer is: regular 3-year old kid who is testing his boundaries.

Then it gets a little harder. Matthew is stubborn. This is no secret. He was stubborn in Korea. I am pretty sure he is about 10 times more stubborn in America. So there’s that.

The second layer is: kid who just happened to be born stubborn. Kid who is never going to be described as easy-going.

Then comes the control. I believe his history is the biggest contributor to his feeling the need to control every aspect of his environment. And while it is difficult to deal with, I can completely understand his feelings.

The third layer is: control issues.

So I made a list of concerns/situations that I wanted to discuss with the therapist. For the most part, she was totally unsurprised by any of it. She has 2 daughters adopted from China herself, so she is personally no stranger to the issues we are dealing with. As we go through the list, she tells me “normal, totally normal, for OUR kids”. Meaning, yes, these kids will struggle with control. A lot. Meaning, yes, it is extremely common and expected that Matthew freaks out about new shoes, new clothes. She also gives me ideas of how to approach these situations.

And I knew or suspected that most of this was “normal”.

Then she asked me about his language. I explained that it was getting better, that he would have days where he would say sentences–real sentences with verbs and prepositions. Days of clarity. I told her that his language seemed to hinge on his mood that day. Because then there are times….days, sometimes, where he is out of it. He is angry, he is not there–that is the best way I can describe it. To use a train metaphor that Isaac says a lot–he is “off the line”. Those days he barely speaks. When he does, it is to tell me No, I don’t want to. He asks for things that don’t make sense. Yesterday he got up from his nap and cried because he wanted a paint brush.

Her eyes narrowed. She flipped through his chart and then said the words that I have actually been dying for someone to say to me for so long.

That’s not normal. Not even for “our kids”.

I told her my theory that he could be having low grade seizures. Considering his neurological condition, she thinks that this definitely is playing into the situation. She immediately pulled an MD in the room with us and we decided that he should have a 24-hour EEG to monitor for seizure activity.

Because the thing is, as we considered the behavior he displays sometimes, you could consider autism or many other different diagnoses. But autistic kids aren’t autistic SOME of the time. While they might have good days, they don’t have completely symptom-free days and then plunge headfirst into terrible days.

I feel relieved, honestly. I don’t want him to be having seizure activity. I don’t want him to have any neurological issues. But he does and now that I have been working on peeling back his layers, I have to admit, I think the neurological stuff is impacting him–of course it is.

I don’t know what the test will show. I don’t even know when the test is going to be. If it shows nothing, I don’t know what the next steps will be. But I know that the doctors there are very willing to help us through those next steps. I just know for sure that it isn’t normal, and I’m relieved.

As we have worked on peeling these layers away, one other thing we have found is the child that Matthew really is….when you take away the stubbornness, the control, the possible seizures. He is a joy. He is funny, clever, smart. He throws his head back and laughs loudly when something is funny. He is gentle, caring. This is the child that I want to know more of, and I will keep peeling until I find him.

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13 Responses to “Peeling the Onion”

  1. Lara Says:

    Praying you get some answers from the tests. Did she say anything about the possibility of RAD? I don't know a whole lot about it, but I know sometimes kids with it have control issues and choose to speak incorrectly as a way of controlling things. I love those last sentences you wrote, it is so important to remember those things.

  2. Good point, Lara. I meant to mention that in the post, but forgot to. The one thing that is "normal" and great really is his attachment. It is very secure. He gives and receives affection to us freely and is very confident as to who mommy and daddy are and what that means. The other thing is that a child with RAD wouldn't go in and out of acting like a child with RAD. They either are or they aren't. I am so thankful that he doesn't seem to be struggling with that!

  3. kelly Says:

    I can imagine what a relief it was to hear the words you'd been thinking yourself come out of the mouth of a professional. Mamas know. I'm very glad she was so proactive in getting an MD involved. I hope the tests shed light on what could be happening and, ultimately, what Matthew needs.

  4. Wow…this is very interesting. I never would have guessed anything related to seizures? It sounds like you have done your homework and I'm glad you have the IAC so near you to help you through this. I'll be praying for you guys…Erica(who hasn't commented on your blog for awhile but still thinks your blog is one of my favorites 🙂

  5. Lori Says:

    I'm so glad you've found some doctors who are willing to help. While you don't want your child to have problems, when you know they ARE having them, it's almost a relief to hear someone justify what you've known for a while!! Will pray you guys get answers and guidance in what roads to take with him!

  6. Cori Says:

    As scary as this could be, I imagine there is great comfort in having some name to put to these issues. I hope the tests are soon and give your family some direction.

  7. As weird as it sounds, I'm so glad you were told "this isn't normal." I'm sure that it offers you a great deal of relief on one level. There's something to be said for things that can be *fixed*! While the seizures may be concerning, hopefully you'll find an answer to them and see more of the gentle boy you love emerge.(Can I be a little selfish and ask you to share the control strategies you learned?)

  8. Christy Says:

    Hi Elizabeth. I'm glad to hear that you're talking with the IA Clinic and working towards answers. Prayers that the doctors are able to get to the bottom of this and help your whole family move forward.

  9. Sue Says:

    sounds like the help you have found to keep "peeling the onion" came at just the right time. i hope that the tests results come soon…and that there are many more laughing and smiling days with matthew ahead.

  10. Yvonne Says:

    Thank you for sharing all of this with us, Elizabeth. I have had (different) situations in my life when I know something isn't right but needed some one else to agree with me. And it was such a relief when they did. I'm so glad you have these great resources available to you and your family. I hope the tests provide the clues you need to answer these questions. And what a blessing that despite all of this, his attachment is great. Praying that you will be receive the answers you need soon.

  11. Praying you get the answers you need soon. I know it was a relief just to hear the dr confirm what you'd been feeling. We know our kids and we know when something is off. And to have a dr who is "in the know" makes a huge difference. You're in my prayers, keep us posted.

  12. Kristen Says:

    totally get this – no one wants her child not to be "normal", but its reassuring to hear someone else acknowledge the struggles you are facing and to offer solutions.i hope the test goes well and you get the answers you need to help M be the joyful, wonderful boy he is underneath all the layers.

  13. Jenny Says:

    hey friend, praying for wisdom for the doctors and that they will find out what's going on.When Jack was still in Korea, they thought he had a seizure disorder (as far as we now know he doesn't and didn't), but I did a lot of research on it at the time and found it to be so much less scary than it first appeared (for me).as always, I feel privledged to get to follow your journey.


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