So a friend suggested a neuro-psyche eval would be a good idea for Trevy. Pre-surgery. To get a developmental baseline.
I was like, duh, good idea!
And relayed the message to Dr. Neuro...who was like, duh, good idea!
So last Tuesday morning we trekked to the hospital. Just Trevy and me. It was like a date.
::smile::
Although I silently called down curses on Jonathan's head when I opened the trunk and discovered zero out of FOUR strollers! Because of course it's his fault!
::wink::
Anyway...
We bumped into Dr. Neuro while filling out paper work. Can I just pause a moment once again to say...
I LOVE HER
(see...I'm not all whining and moaning and negativity! I give praise where praise is due. And vica versa.)
She gushed over Trevy's curls. And smiles. And how big he's gotten. Then looked me in the eyes and asked, "how are you?". Which, drat, dontcha know made my eyes water. She rubbed my arm and said we'll chat later. To spare me the embarrassment of a waiting room meltdown. Plus...Ms. PhD was standing with us ready to begin the testing. She'd graciously squeezed us in.
So away we were whisked. To a little room. With a little table. And little chairs. And a suitcase on the little table out of which peeked various little gizmos and gadgets. Waiting to be manipulated and re purposed. Hidden and found. Removed...but not so much with the replacing. Explored...but mostly with the mouth. All for the agenda of telling me where my son falls on their (whoever they may be) developmental scale.
I sat in a corner. Clipboard on my knee. Under which rested a possibly 30 pound file folder. The life of my son. Written in doctor speak. Ms. PhD suggested I use it was a tray to steady my clipboard.
I had premeditated to not say a single word. Just sit like a shadow. Melt into the wall. And let him be...
fly away sweet butterfly...fly...
It's always slightly interesting to watch people interact with Trevor like he's...you know...typical. And watch the realization...after he has not responded to his name after the 10th time they've called. I see the surprise dawn all over their face because he looks so...you know...typical.
This kid doesn't understand a word I'm saying
Then he'll casually glance up and grin behind his binky. Which was reinserted so he would stop mouthing all their germy crap. And in that moment...everything changes. Just like it did in that little room.
She started talking to him in a younger tone. Baby speak. You know...no more than three words at a time.
For example...she plops a puzzle on the table. Takes out a piece. Holds it in his direction. And when she's finally sure she has his attention says...
You do.
Trevy...not really a puzzle kinda guy...throws the piece across the table. Claps in his quirky tip-toey way. And says a very nearly perfect...
"Yeaaaaaaaaaaaaa"
No no Trevor. Put piece in. She reprimands. And demonstrates again.
Again...the piece is flung. Only this time further.
Ms. PhD jots and diddles on her own form. While I remind myself to let him fly...
And so it went. With rubber ducks. And see through contraptions. Which Trevy actually did quite well at. And cups. And blocks. In. And out. Yada yada yada. Jot...jot...jot.
And then we were done.
Ms. PhD finished up her diddling. Tallied this paper and that. And finally turned to me...no longer shadow women but now nurturing mommy. Snuggling her butterfly. Hmmmmm...do you think someday he'll be offended that I didn't think of him as something a little more rough and tumble? Like an eagle? Or a flying squirrel?
Anyway...
She pronounced matter of factly....
Well...I'm giving him the diagnosis of Global Developmental Delay.
I'm sure I blinked or removed a much too small gizmo from Trevor's sensory seeking chops or something. I don't remember.
His receptive speech based on both your feedback and mine is about 9 months developmentally...
His expressive tested about 12 months...
His problem solving...things he can touch and see...is a bit ahead at around 17 months.
So when put everything together...Trevor is functioning at around 12 months of age.
Speaking of Trevy...he was SO ready to blow that joint. Which made for a shortened summary. She assured me that this is just a baseline. And we'll all be hoping that surgery makes a difference. Yada yada yada. I wasn't really listening. Just nodding. And pretending to listen.
But before you get ahead of yourself...I wasn't destroyed either.
Remember...I live with Trevy. Day in. Day out. Plus I have two older...typical...children. So I'm pretty in tune with where Trevor is developmentally. Ms. PhD didn't tell me anything I didn't know.
But as I gathered him in my arms. My functional 12 month old...trapped in a ever growing 30 lb two and a half year old body. Whom I would have to lug several miles from their office back to my car. Because he couldn't walk it himself...what with clusters of seizures and lack of stamina and such. I couldn't help reflecting...
I needed this. And I needed it in black and white. Look me in the eyes and tell me my son is Globally Delayed direct.
Because I've been a second guessing mess. About the surgery. I mean...who wouldn't be. Right?
But I know that I know that I know that I know...
We have to do this. This is the right decision for Trevy.
And I think I found my (pre-surgery) Peace on that sweaty...huffy...puffy...clustery...hike back to the car. And I'm okay. For now...
Not that you were wondering or anything...
::smile::
11 comments:
That's what the word epiphany was created for.
I'm glad you found peace. We didn't have the evaluation until a month after surgery. We just wanted to baseline where things were at and come up with a new and improved plan. And we knew that she was behind and since the surgery didn't add brain we knew the cards were stacked against her. It was a relief to get factual information about where we were. When my 2 1/4 year old was pronounced to be at a 10 month level I wanted a recount cause I was sure it was more like 12 months. But I was glad to have the information and glad of the recommendations they made to EI. So I get where you are at and I'm glad it helped you make peace with surgery.
Try to avoid going near medical offices and hospitals until you absolutely have to. We need to keep all the germs away. We don't need any illnesses to delay the surgery you are at peace with.
Ya know, I totally associate butterflies with Emma. I've never really been a butterfly person, but since Emma has joined us, butterflies are everywhere in our home.
I have the same thoughts about Emma. I live with her. I know what she's like and how she acts. But we we do the testing and they tell me that she's at a 6 month level (with a smattering of skills up to 10 months old), it takes everything I have to not cry. And then afterwards, the tears flow. As they flow now just typing this. There's something so definitive about it that it breaks my heart. We've been at the 6 month level for at least a year now. And it hurts every time. But there's nothing to do about it except what we're already doing. So I accept it...for now.
And I HATE it when I forget the stroller. She's so darn heavy.
LOVE your post, as usual...
I can see myself wheeling Colby into pysch eval after pysch eval over these 24 years...Here in SC, it USED to be every 4 years...That may have changed since he is not longer in school...But I always dreaded it, even though, like you, I already KNEW the outcome...Guess I was just naive enough to think they might see something I didn't....Turns out it was usually the other way around....
Maybe one day when I am in a particularly pissy mood, I will post about actually having to fight his school for 8 months (and eventually go to the governor) in order to KEEP MY SON IN A STATE SUPPORTED SCHOOL FOR THE MULTIHANDICAPPED BECAUSE THEY SAID HE SCORED TOO LOW ON HIS PSYCH TO ATTEND!!!!!!
Can you guess how I feel about THAT one?
Don't EVEN get me started....
Bottom line, YOU know your child...YOU know what he CAN do and understand...And you know better than ANYONE what he CAN'T do and CAN'T understand.....
I am relieved that you feel the way you do about the results....You can't hang your hat on any of that....
Much love,
Cyndi
Great post and fabulous timing. Definitely an excellent idea to get that done both as a baseline pre-surgery and to reinforce your confidence about why he so desperately needs the surgery.
Maddie was scheduled for a Neuro Psych eval the week after her seizures showed up, because we were beginning to see strange things in her behavior. We canceled and have not yet rescheduled. I have had enough evaluation through EI to last me for awhile. I obviously know my child, but to have it written on paper in black and white.......makes it more heartbreaking.
I am so so so glad you got this reassurance as the surgery date draws near. Y'all are always in my thoughts and prayers right now.
I've said this many times in some way or another...the way you right puts us right there where you are and having us see and feel what you do for Trevy.
How hard it is to let them just be and fly away on their own, when we so much want to guide them and hold them tight.
I think no matter how much you know your baby and understand where they fall on any scale, it feels different when someone else says it to you...its like it takes on a whole new meaning, one that you don't quite want to hear.
I'm glad this helped push away or maybe take the place of those second guessing thoughts that have entered your mind about the surgery. I'm sure easier said than done, since I haven't been in your shoes, but you've got his best interest at heart...you always do :)
Oh, and yeah we are always wondering how you are doing throughout all of this...this will affect all of you, so remember you guys matter too :)
Hugs and Prayers,
Jody
I hate evals, but we only get them through early intervention. I don't think I could stomach extra evals. You're a stronger woman than I.
I'm glad you have peace.
Worry about one step at a time... get Trevy SF, then work on the development. Remember, he's still young and his brain is very elastic. He has time to learn and catch up.
This is one subject I can relate to. When Marissa turned 4 and her pediatrician recommended we have her evaluated because she wasn't talking yet, I thought immediately that she was fine and that the doctors would say that she's actually ahead of her age bracket since I was completely impressed that she could complete a 50 piece puzzle meant for 7-10 year olds on her own. Boy was I floored when they said that she was delayed and was testing at a 1 1/2 to 2 yr old level!!! I felt so guilty. Like I had somehow let my child down. She didn't have other kids to play with, she didn't talk, but she got what she wanted and communicated with her father and I without a problem. I never once thought that no one else would be able to understand her.
She received another eval last year at the end of 1st grade and she's made some remarkable strides in the short 3 years since all this began. The director of the CPSE at her school still marvels at how far she has come from that little girl who barely even talked when she first started school. And that was even after a year and a half of preschool.
Boy was he surprised by Haylee this past summer when she was up for evaluation and saw that she scored above average for girls her age. Yup, I got a smarty pants in my family, and she lets us all know it too. *smiles*
I'm positive that once Trevy is rid of these terrible seizures that he will start reaching those developmental milestones without a problem. He'll soon be driving you crazier than you thought you could get and you will look back and marvel at how far he has come and be able to laugh in the face of IS.
I'm so glad you were able to draw something good from this experience. I can't go get Austin evaluated. I just can't. I haven't even taken him to a developmental pedi. Just can't do it. It's killer just to know what I know. I see it without him being around other kids, and I'm not a qualified developmental professional.
But, I think it's great that you went ahead and got it. It will just end up showing you how far he has come after surgery. And he will take off. That 12 month level left in the dust as he learns!
I love you guys! And I CANNOT wait until you're posting "another seizure free day for Trevy!"!!!!
Frankly, I wonder everyday, and resolve it with prayer. (Some) Prayers answered.
Barbara
It's bizarre isn't it? That feeling of gasp, can't get the air, hate to hear the words yet at the same time thanks to those who said the words and reinforcing what I already know yet sometimes find myself talking myself out of. Does that babble make sense?
Hug your boy. Love him...as you do so well...know you are doing your absolute best for Trevy.
I wish you'ld had a stroller! I hate those moments too. I've even been putting Bup back in the sling a little...which is amazing for Mr. 40lbs...but goodness it's better than nothing when a stroller/wagon etc is nowhere to be found. You think all this carrying of little men would make me super svelte...hmmmmm...:)
Anyway, Danielle, you're awesome...an awesome mom, advocate and woman. Put that in your heart & hold tight.
Hugs,
Margo
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