Tuesday, September 7, 2010

Getting Real

This is one of "those" posts...
You know the ones....
The rambling, fuming, crying ones.
Yep, one of THOSE posts :)

I am so T.I.R.E.D. of wearing the mask.
Tired of being nice.
Tired of holding in all the frustrations because some people will judge me as whining, some people will leave rude remarks about manning up and getting over myself, some people live in glass houses and don't like it when the rest of us are real.

Well guess what?
I warned you!
If you are one of the people just mentioned there is a little red box in the upper right corner of this screen with a X in it... go click it now!

Because I am about to GET REAL and it could be UGLY!

I have a special son... you all know that right? Well, actually I have 3 special kids, because everyone is special in their own way, but Nat sort of tops it all out. He is the one that I spend HOURS every day helping, coaching, teaching, molding and yes, agonizing over. And life has been H.A.R.D. recently. Not that I am complaining about hard, I know it is the path the Lord has put before us. But I am tired of all the people who look at me and say "It can't be THAT hard."

Guess what... it IS THAT HARD!
 And I am tired.
 I am drained.
My tank is on empty and I have been pushing this body for way too long!

I need recharged. I need empathy. I need a shoulder to cry on and arms to hold me. I am so glad that I have the Lord. I can not imagine this life if I was not able to wake up in His embrace every morning. If I was not able to throw myself at the foot of His cross a million times a day. If I was not able to cry myself to sleep at night knowing without a shadow of a doubt that He had me wrapped up tight in His embrace. I can not imagine life without praise and worship music playing constantly just so that I can draw strength and KNOW that He has a plan. A special plan just for us.

School has started again. And while I am SO THANKFUL, it is also really hard. Nat does not do transitions, so even though he is in the same class as last year, with the same teachers and many of the same students, it is still really hard on him. And he is doing FABULOUS at school. I am SO PROUD of him. He is working so very hard, and doing so very well at school. Really. Only one or two very small, very minor problems at school. He is such a rock star at school this year (and it has NOT always been this way!)!

 But the issue with that is that he uses up every ounce of energy he has at school and then he absolutely falls to pieces at home. It is a complete night mare. 4-6 hour long violent tantrums. Hitting, kicking, biting, throwing, body flailing everywhere, hurting himself and others tantrums. That go on F.O.R.E.V.E.R. It is so hard. I am beat up from head to toe. My body hurts so bad I just lay in bed and cry (some more) at night. I have even tried putting him to bed earlier with his night medications, but he fights that too and manages to stay awake somehow. And all of this with people watching everyday. Oy Vey. It's too much!

And that brings us to his In Home Behavior helpers. They are a blessing in so many ways. Extra eyes and ears. A fresh set of suggestions. People with a little more energy than I currently have. But they are virtual strangers in our home 35 hours a week. They get here at 7 am (and I am so NOT a morning person!) and they don't leave until 8:30 at night. They are here for the hardest parts of the day, obviously since that is when we need support. But it is hard to open my home daily, over and over again. Some days I just don't want to do the dishes, or pick up my dirty underwear that the dog drug out of the laundry basket, or put on a bra before 7 am.... or anything! Some days I just want to yell at the door when they knock (sending the dog into a barking fit EVERY TIME!) "Go away! We are going to be a NORMAL family today!" But then again, I don't really have a choice. This is what I have to do to keep my son at home where he belongs! So I open the door. I smile through my tears. And I welcome them into the innards of my family. And I loose a little more of myself every time. I get a little more depressed or tired every time I open that door. 

And then that brings me to the "team". A whole bunch of people, from a whole bunch of organizations, all who think that they know what is best for my little family. I am so tired of trying to please them all. So tired of not rolling my eyes at their suggestions that we have tried over and over again. So tired of trying to juggle it all and not get ME lost in the shuffle somehow. Some of them get special needs kids. Some of them don't. Some of them seem like they are for the family. Some just want to throw Nathaniel in some group home. Some of them are nice about it and smile all the while luring you into their traps. Some of them just put it out there and walk away while the tears are still falling. And I am so tired of them all. Hasn't anyone ever figured out that a mom with

35 hours of In Home Behavior support
5 hours of out of home therapy/doctors appointments
14 hours of in home therapy
5 hours of homework
cathing every 2.5 hours
and about 8 meds a day
(all for ONE child)

EVERY WEEK !!!

Just does not need one more meeting. Especially not a meeting with all of them arguing about what is best and ignoring ME. Where is the FAMILY driven plan? The FAMILY centered thinking? Where is my buddy in all of this? (and don't get me wrong! Amy, a.k.a. "my buddy" is great, but again she is just one person against all of these agencies with me!) It is so draining, but onward I march, praying without cessation for HIS plan and HIS will to be revealed!

And the assessments and authorizations... so sick of them all. Why does everything have to boil down to money? I seriously HATE money! So of the assessments I get, and I think that  they will give us much needed answers and directions to go in. Some of them sound foolish and silly to me. And ONE of them I REALLY want, I firmly believe it will help us so much. But, or course, that is the one that no one will fund. The school won't fund it because they could sort of do a similar assessment. Regional Center won't fund it because it is not through a vendored agency (and regional center seems to be biased against the group it is through..) WRAP won't fund it because there aren't established funds to go through with the treatment recommendations (yea... $5000.00 for 20 weeks of therapy hasn't fallen out of the sky and onto my lap yet..) So that leaves me. The broke one. Yes I WILL find a way to pay for the $350.00 assessment, just like I WILL find a way to pay for the therapy, but dang it, why can't what I think will work be an option through any of the agencies? You know, the ones so big on assessments? Ugh!

And speaking of money (yea, I sort of was...)
Have I mentioned how much I HATE money???

 What I want to know is how ANYONE with the above schedule for ONE CHILD is supposed to work 40 hours a week? Seriously? How does that happen? Someone MUST know... so please let me in on the secret... PLEASE???  So you might understand what I mean when I tell you that I used EVERY PENNY I had to pay rent the other day. So when I went to a little baking yesterday (for Taylor's birthday) and couldn't find any butter in the house I just sat right down and cried my eyes out. For over a half an hour. Over butter.... or the lack there of. Geesh. I give! I wonder if people REALLY realize how blessed they are to be able to walk out their front door, hop in their car, drive right over to the market, buy some butter (or anything else their little hearts desire) and head back home in the matter of minutes??? Seriously. I can't do that. Many people that I know can't do that. It is a BLESSING to those that can!

And now for my final rant (I think)...

I NEED church time.
Time to fall on my knees and worship with other believers.
Time to LISTEN to the message!
(You know, without little hands poking at me and little voices begging for me to tell they "how many more minutes" every few seconds!)
Time to be with other believers.
Time to recharge my batteries.
Time to drink in the Holy Spirit all around me there.
Really, church is about ME and MY NEEDS in this family right now.
I really don't care if my son "integrates" at church right now.
I really DON'T have the energy to train someone how to deal with him so I can get this LITTLE break each week.
I really DON'T care that some PHD thinks it is bad to separate special kids for a SHORT time like church.
I REALLY just need a quiet safe place to let my son play (with supervision of course, but that I am willing to bring with me!) so I can go to church each week.
And not worry what little old lady working in Sunday School is going to get clocked for not letting him fidget during the story.
And not worry if sister will end up in tears because yet another person doesn't "get" her brother.
And not worry if the volunteers are going to "manage" till the end of service, then unload on me all of the problems they had.
Or worse yet, not have to worry if they are just not telling me the problems because it's "too much" for me.
Will you pray with me for a solution for this?
Because I am so tired of it all.
And I NEED this time spiritually.
I am alone so much in the trenches of these battles, I seriously NEED to find fellowship!

Okay... I am going to step down off of my rant now.
Get dressed.
And go attack this day.

But seriously, if you are out there and go through any of this too won't you please leave me a comment and let me know I am NOT alone in this crazy, tiring and overwhelming walk that I am on???

4 comments:

HennHouse said...

You are NOT alone.

These are the kinds of posts when I wish we were geographically closer... to be the arms that hold as well as the "ears" that hear on this blog. If we were even in the same city, I wouldn't have finished reading, but just invited myself over... :)

I have no advice. No quick words. No answers.

Just love you.

Denine Hicks said...

What an incredibly difficult path you walk, Gretchen. I can't begin to fathom. It must be frustrating beyond words. I know part of it is that you are SMART and STRONG and not willing to just roll over to the misguided whims of others. You will fight - as you have always done - for what is right for your family regardless of what others think. And that's exhausting.

I will pray for and with you and give you love and hugs as often as possible.

Thanks for doing all you do to raise your beautiful children. The world is a better place for it.

Denine

{april kennedy} said...

Kaia often gets so frustrated that even Blake's cousins 'don't get him'. So even Audrey isn't alone right now. Nor are you. I so get it. And, even though our schedule doesn't even come close to yours...their are still tons of arguement and frustration between Dave and I about 'getting' Blake and what is acceptable and what isn't. Sometimes he (Dave) feels to me like the same people coming into your home and telling you what is best when really I've been the one home all day figuring him out. So there...I just vented about the love of my life, who I do love....but just keeping it real for you!!

Keep doing what you are doing and hang in there. We would love to see you when you at UCSF...so keep me posted on your comings.

amy.lee617@gmail.com said...

Oh you are so not alone! Just being a mom can sometimes be overwhelming and you have that 100 fold! But you are doing it! And doing a great job at it as well it seems! You were in my thoughts today and now I know why. I lift you and your family up in prayer that you will get peace.. that you will have a moment to breathe.. that you will find the spiritual rest and rejuvination that you long for. I am praying for you now.. and I pray that tomorrow when you wake.. things will start to feel a little easier.

Hang in there!!