Every day the wonderful happens…

and I'm here to blog about it.

Sometimes I Wish it Had a Name May 9, 2012

Filed under: adoption thoughts,Matthew,special needs — Elizabeth @ 9:21 AM

Last Thursday was Kindergarten Kickoff at the boys’ new school.  It was a time for the kids to have a little while to explore their new school and for the parents to get informed about everything we need to know.

We were excited about it for many reasons, but mostly because we were going to meet Matthew’s friend.  THE friend.

You see, after 2 years of preschool, Matthew has identified one child as Friend.  His name is Sam, and Matthew talks about him with a smile on his face.  Matthew plays with Sam and if Sam isn’t at school, Matthew plays alone (this is his choice).

Actually, there are many kids who would like to be Matthew’s friend, and perhaps he is friendly with them at school.  I’m not really privy to what goes on there.  But I can tell you this–we have run into kids from Matthew’s school out in the real world….at parks, at stores, at the doctor’s office.  And the same thing happens every time.  Their face lights up, they say, “Hi Matthew!” and he immediately says “NO” and walks away.  Matthew consistently denies even knowing them and then leaves me standing there trying to smooth things over with a confused child.

So we were overjoyed to find out that out of every single child in Matthew’s preschool, there was only one going to the same elementary school as our boys.  And it was Sam.  Better yet, Sam’s mother is part of the instructional support staff at this school and she has recommended that Matthew and Sam be in the same class to help ease their transition into kindergarten.

We were going to meet Sam and his mom at kindergarten kickoff and for 2 days when we talked about it, Matthew would say, “we see MY FRIEND there.”  He was so excited.

When we got there, we scanned the crowded lunchroom and Matthew identified his friend, and then he did what I had hoped against hope wouldn’t happen.  He cried, he refused to look at or speak to his friend, he wouldn’t sit at a table with him.  All the kids were supposed to get nametags and have their picture taken.  When Matthew realized that they needed a picture of him with nametag clearly displayed, he crumpled up the nametag on his shirt, shoved the whole thing in his mouth and hid his face.  It would have almost been funny if the situation was different.

I was so disappointed.  Sam was disappointed.  Isaac was disappointed (and I’m sure annoyed, because most of the important occasions like this take this sort of stressful turn.  One day in another post, I will have to write about how my heart breaks for Isaac in situations like these).

Sam’s mom came to talk to me and asked me what it was that Matthew had been receiving services for (she was aware that he had “graduated” from the special ed program).  My answer was speech, but the glaring elephant in the room was that there are serious issues going on here, and speech is basically the least of our concerns.

But I have no name for this.

My son is socially and emotionally crippled in a lot of ways.  But he is not autistic.  He is not “on the spectrum”.

My son has some sensory issues.  But he does not have a sensory disorder.

My son has some attachment problems, but he does not have reactive attachment disorder (and yes, I am thankful for this).

And I don’t wish these diagnoses on him, I don’t.  But sometimes I think it would be easier if I had something like this to fall back on.  Some explanation of his behavior.  And I also know that I don’t owe anyone an explanation of his behavior, but it is hard to see these searching looks from people, wondering what is wrong.  And maybe if there was a diagnosis, it would make me feel a little better at night as I lay in bed thinking about all of it, worrying if he will every really have friends.  Because I know that soon, no kids are going to want to put up with that kind of reaction from him.  I can’t blame them.

My son has special needs.  Glaring special needs that don’t really have a name, and that is harder than a diagnosis, I think.  Because when they don’t have a name, there is also no clear treatment.

And that is hard.

After kindergarten kickoff, as we walked to the car, Matthew looked around expectantly and asked, “where’s my friend?”.

“Matthew, we saw your friend, and you wouldn’t talk to him.  He talked to you and you wouldn’t even look at him.  Kindergarten kickoff is over now.”

“Oh,” he said as his smile disappeared.

We climbed into the van and buckled up.

“Matthew, why didn’t you talk to your friend?  He likes you and it made him sad when you wouldn’t talk to him.”

His face clouded over as he looked out the window and whispered, “I don’t know”.

 

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12 Responses to “Sometimes I Wish it Had a Name”

  1. mlewis597 Says:

    Oh, that is just heartbreaking. For all of you!

  2. Jerusha Says:

    This brought tears to my eyes. My son is much younger, but I fear that he will act this same way. I don’t know…I pray that he won’t. Last evening he and I and his older brother took a lovely walk and ended up at school playground we’ve been to a dozen times. Shu asked to walk, so I got him out of his stroller. He walked a few feet, then threw himself screaming onto the ground and got even angrier when I would not pick him up and carry him. I put him back in the stroller while we played for 20 minutes, then gave him another chance. He said he wanted down to play. Again, walked a few feet into some wood chips, then began screaming. His older brother is old enough to be largely oblivious…at least it doesn’t seem to ruin his fun. But I was inwardly seething and very sad.

    Anyway…all that to say my heart is with you today. Grace to you (and me) as you walk this road of healing with your son.

  3. kimbelina Says:

    How heartbreaking for all of you.

  4. Tiffany Says:

    This breaks my heart…for you, for Isaac, and for Matthew. I know how much you need a name for it. Not that it would fix it, or make it easier to deal with, but just to have something concrete that other parents and adults could accept. I like what you said about not owing anyone an explanation, but sometimes an explanation would make things so much easier.

  5. Jake Wright Says:

    As always, I am awed and moved that you take the time to write this stuff down.

    What do the doctors say, is this a phase he’ll grow out of, or is this part of his unique/particular special needs status? I guess I mean- could this be a normal developmental stage (stubborn defiance- we have one of those…) just amplified by his unique needs?

    There’s always the flip side of that coin, too- heard on the radio yesterday afternoon that the latest/upcoming DSM revision (dsm5.org) calls into question the entire autism spectrum diagnostic criteria, leaving a whole set of parents wondering how their child fits into that, and whether the services they have been getting will continue. For those people, having a name for what their issue is may turn around and bite them. Sounds like the diagnosis for autism is moving from more of a binary thing to a much more subtle “how affected by this set of disorders is this person?”

    In any case- problems or not, named or not, he’s got wonderful parents and a super cool brother to help. I have every confidence that he’ll be just fine.

  6. Yvonne Says:

    sending you hugs. And thanks for sharing this wonderfully well written post. It must be so hard for Matthew to not know why he is doing some of the things he does and yet is still affected by them too. And I’m with you about a name – sometimes it is just easier to know “what” it is, just to know and be able to call it something.

  7. 12450miles Says:

    This hurts me to read… I can’t even imagine how it must feel for you… and for Matthew. This is very, very hard. I wish there was a name, for all your sakes!

  8. Erica Says:

    I was not aware that Matthew’s struggles were this serious. Thank you for sharing such personal details…I’m sure it will help someone else who is going through a similar situation. I’ll be praying for your family, specifically, that you will be given wisdom and courage as you do your best to help your sweet son.

  9. I KNOW exactly how you are feeling. I think it does have a name:trauma-shaped brain (a term I learned in Cogen’s ‘Parenting Your Internationally Adopted Child’, I think) Many (most) adopted children from China (I have 2, both with differing levels of psychic scarring) do have trauma that we need to help them grow through. That coupled with many other factors (adrenaline is typically much higher, according to the research). There is a lot we can do–I am told, and have applied: can you try parenting him at his emotional age (do you have Brazelton’s ‘Touchpoints’). He appears similar to my youngest daughter–she shuts down when there is too much happening–it is at the level of the child’s limbic brain, not the thinking brain. She can’t help it, of course, like your son.I have to parent her much like you’d treat a two year old (she was adopted 21 months ago). Likely, his emotional age isn’t much older than the length he has been home. There are are few GREAT adoption (therapeutic parenting type) therapists that could help a lot …. At least this has been my experience. JMHO, Meryl Rose, Minnesota

  10. Jenny Says:

    emailing you, sweet friend.

    love you, xox

  11. Oh, girl… so much of this is SO familiar to me. We need a therapeutic get-together.
    As Ingrid’s two-year home-aversary approaches, I can’t believe it’s been TWO YEARS of some of the same old stuff. So disheartening. 😦
    And your thought about Isaac and how your heart breaks for him? I know *exactly* what you mean. Every time something happens with Ingrid, my heart hurts for Olive. Some days, it’s just too much, isn’t it?
    I hope things get better for you with each passing day.

  12. Nora Says:

    Elizabeth, I don’t know you but I’ve been reading your blog for over a year now. My son joined our family through adoption from the same place as Matthew, and through the same WIC list. We just took custody of him and each day brings new insight into the beautiful puzzle of his brain. Thank you for sharing this.


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