One of the recurring themes I've noticed in the comments I've gotten on the blog is that people appreciate me being real about the challenges we're facing with Luke.
Let me be brutally honest. Luke isn't the problem. He's perfectly happy most of the time, sitting around, rocking and drooling. The problem is me.
The song above is one of two songs I had on my iPad with me in China. It's a pretty accurate description of where I'm at.
I've been praying, "God, please change Luke." Yesterday, for the first time, I was able to pray, "God, if you're not going to change Luke, please change me."
Our family is participating in a university study on adoption. There's one survey you take before you travel, one you take shortly after coming home, and one you take later down the road a bit. I recently took the second survey and received a concerned follow up email stating that my responses fell within the parameters for depression. They sent me "resources." Resources is a fancy word for 3 mental health websites.
Honestly? While the idea of sitting on a therapist's couch, without any children needing anything from me for a 50 minute hour does have some appeal for me (where not only would me finishing a sentence without interruption be permitted, it would actually be encouraged!), there is no way that I can 1) fit another thing into the schedule, or 2) come up with childcare for a weekly appointment. So that's out.
I keep hoping that getting some answers will help. But we haven't really gotten any. I know, I know, we've been home less than 2 months. Be patient. Yeah. I'm working on it. It's just frustrating to have the wheels of the Special Needs Help Machine grind so very slowly. Everyone agrees that there's a problem, but no one is giving us any solutions. We get test results. We are supposed to be getting reports. But we have yet to receive any diagnosis, any therapy or any actual suggestions for what to be doing to help Luke progress.
It's frustrating to have Katie actively undergoing treatment for her needs, and still be shuffling around from office to office with no one doctor/therapist/department/entity "owning" or coordinating Luke's care. That's one of the downfalls of adopting two at once. I do okay not comparing Katie and Luke developmentally most of the time (there's just no comparison, apples and oranges), but in respect to progress in treatment, it's hard not to compare. When we brought home Hannah, the timeline for care simply was what it was, there was no one to compare her treatment to, if that makes any sense.
Part of me feels like I shouldn't post this; I should wait until after today's assessment and post about that instead. Or that maybe we'll get some answers today, and I'll feel like if I had just "held in there" a little bit longer, I could have posted something happy. But this is where I'm at.
I'm tired, I'm worn
My heart is heavy...
Full lyrics here.
Please don't be concerned. I'm okay, really. I'm just struggling, and admitting that it's hard is easier than trying to pretend that everything is "unicorns pooping rainbows." (That's a loosely translated Paul-ism.)
It is really hard not to compare. And it is so hard not to stomp and yell regarding special education. Elora is so very far ahead of Colin. When I hear her telling her daddy a story and then see her twin struggling to figure out how to communicate to me that he wants an apple it makes me cry. They know he has some sort of neurological issue and they are calling it a phonological disorder, but there's nothing specific. We got him in for testing months ago, but services still aren't in place because school wasn't in session and they want to do things through the school district. Seeing his level of frustration at not being able to talk just increases mine. I have more answers than you do, but . . Shecki, you are the strongest person I know. Thank you for sharing and know that you are not alone. That's all I can offer.That and a laugh that is half cry, followed by a digital hug of understanding. -H
ReplyDeleteI imagine it must be even harder not to compare twins! I was hoping these guys would be "twinnier" than what they are, but they're worlds apart in every way but size.
DeleteThank you. I hope you get some answers soon, too.
I've been praying, "God, please change Luke." Yesterday, for the first time, I was able to pray, "God, if you're not going to change Luke, please change me."
ReplyDeleteAnd I will be brutally honest. I have been praying that God would nudge you to that prayer.
We don't know each other in real life, Shecki, but I have to say that I have (am?) living there. We have a child much like Luke, in our family. completely baffling. And onward we march.
I've had people challenge me - why would you adopt again (more than once!) if things are tough with that particular child. My answer is real and raw. Because it is something that will not be easily going away and it's tough. And I was called to do hard. And honestly, what that child needs isn't a remedy, but an advocate. And I guess that's me!
So, I hear you. I read between the lines. And I want you to know it's okay. Luke will progress and develop on Luke's timeline. Better yet, Shecki, will progress and develop on Shecki's timeline. (Replace that with "Shelley".)
I struggle too. It hurts. But you will find your way! And if you need help, will you ask? I 'd be so happy to pray with you (or send you a pizza!)
Hugs (truly! and I'm not even all that huggy!)
Shelley
Thank you. I appreciate your prayers, and I would absolutely take you up on that pizza! LOL!
DeleteThen email me, silly!
DeleteShelley
learningtogetherathome@gmail.com
You don't know me, I've just found your blog recently from RQ forums. I just want to say that I'll pray for you and I'll pray for Luke. I understand you feel you don't have time to take care of yourself, but please, if you ever feel truly underwater: you need to take that time. It will only be worse for your kids if you really do have depression and become checked out. You won't be able to help them anymore if you aren't able to help yourself.
ReplyDeleteJust know lots of people care for you and care for your children. I hope you get some answers soon. (And yes, thank you for being so honest in your blog. So many of the adoption blogs are all hearts and roses, and that isn't what life is. Hearing the real story allows those researching a major life decision to make an informed one!)
Thank you. I think it's a hard call because there are peaks and valleys throughout the day, you know? Sometimes, I feel like, "I've got this." Other times, not so much.
DeleteShecki,
ReplyDeleteJust wanted to let you know I'm praying for you! I have been where you are and when you do get answers you will cry of pure joy, but the long road to the answers can be so trying and such a struggle when you have many other children that are depending on you. I just can't imagine my 2 oldest ones gone on top of all of that!!
PDD-NOS is what Ethan was originally diagnosed with because they wouldn't look into things enough as a whole. To be completely honest I actually diagnosed him myself after doing TONS of reading on neurological disorders way before the "system" ever diagnosed with with anything useful.
I did end up having to have him taken to my own Neuro-Psycologist because the system was giving us different diagnoses and answers all the time. I also found out until they are at least 3 they really don't like to "label" them with anything until they are FOR SURE they have something wrong that won't change as they get older.
Hang in there and know there are people praying for you and your family!!
I started checking out your sensory processing info, and I can tell I'm going to have to spend some serious time link following there! The evaluators today said he was "sensory avoidant". We finally have an actual therapy appointment scheduled in 2.5 weeks, so that makes me feel better.
DeleteI can sooo relate to your situation. We can home with our two sons 2/2012. They are both 5 yrs old now about 4 mos apart, but developmentally they are years apart. The older of the two is much more like a two year old in most ways. Our transition was long and difficult. Months went by and there was no joy in our family. To be honest there was regret and anger. It was so hard. Now a year and a half later God has helped my husband and I to change, which is what needed to happen. In the beginning we were trying so hard to help and change our son that we were all frustrated. FWIW the thing that helped us the most was to just be a family and attach with him for a season. We are not where we thought we'd be at this point, but we are nowhere near we were. When we relaxed, our son relaxed and the progress came, and the joy. We had to met Jacob where he was instead forcing him to be where we wanted him to be. If Luke is happy and has no emergent health concerns, is there anyway you could put the testing off for a while until you are more rested and settled into your new normal? I know how frustrating it is to hear, be patient and give it time, but it really does get so much better. I'll be praying for you. God bless you. ~Tina
ReplyDeleteI think you make a valid point (several, actually) but as far as putting off therapy, I keep hearing the earlier the better for this kind of thing. Patience and time, though, I know I need to keep telling myself that, too.
DeleteAh, yes, the peaks and valleys of the day! Sounds normal to me. My baby's shoulders don't seem to be in their sockets, she can't raise her arms up all the way, her hands have had stage one surgery and need stage two, and her little toes are all fused. Do you think Kaiser would refer her to an orthopedic specialist? So far, two months home, haven't heard from anyone in ortho. If I don't hear from Shriners tomorrow midday, I'm going to call them again and threaten to camp out on their doorstep.
ReplyDeleteBabe, all I have are hugs, prayers and ears...but they're all yours. You are amazing, and being able to admit that you are struggling, that it's hard, that you need Him, and need us...that's just part of what makes you amazing.
ReplyDelete