Wednesday, February 27, 2008

emotionally drained

I'd say exhausted crying is the theme this week. Why? Anxiety? Depression? Hormonones? Conflicts? Fragile X? Sleep deprivation? I've felt very fragile and tired. By fragile I do mean that my FX symptoms feel amplified and I feel teary-eyed and crumbly. Today was the sleep clinic appointment. Today . . . I needed someone with me today to help me tell my story. I guess I went in with such a positive experience from the behavior clinic that I just expected more.

The doctor walked in without a file, without the papers I diligently filled out and promptly returned, and without a clue as to why were there. He proceeded to ask me An Hours worth of questions about Punkin's birth and developmental history. When he asked, "Has he had any developmental delays?" the sinking feeling in my throat sunk to the bottom of my stomach like a ton of bricks. I handed him Punkin's IEP and a completed rating scale from his teacher. "What is this?" "It was requested. So I brought it." "Great, I'll make a copy and file it." I think I lost it internally. ????? This is the Center for Disabilities and Development. This is important to me. I do not feel like this important to you. Why should my son and I trust you?

So after an hour of questions, I pried Punkin off my lap (from bouncing. for an hour) in order to complete the physical exam. This included the basic ear and lung check along with the elusive "look in the mouth." When I reached out to hold Punkin's arms down, the doctor said, "Oh no. We don't want to upset him or he won't cooperate later." Okay, in theory this is really sweet. But in reality, it's impractical. If he needs his tonsils checked, he needs his tonsils checked. I am so good at the "hold his arms down and press his head against my chest to keep him still" move. Let's get busy. Get 'er done.

In the end, the result of the visit was a muddled mess. On one hand, I'm relieved because no one seems to think anything serious is going on. On the other hand, I'm anxious because no one seems to think anything serious is going on. They basically told me that "He's in bed too much." I allow him to nap too long on the weekends and try to make him go to bed too early. He should be sleeping for an hour at most (they reccommended 30 minutes) and going to bed much later. They were unconcerned with the frequent crying and waking up during the night. I know other families deal with much worse -- children who are awake and crying (or just awake) for hours. But let's face it -- even five minutes is disruptive. And five minutes every two hours adds up to 25 minutes a night. Which adds up to 175 minutes every week. And in all honesty, I have been So Exhausted lately that I have no idea what time he wakes up or what he does or how long it takes to calm down. I don't know. All I know is I'm tired.

All of this left me with the following questions:

    1. Am I the one with the sleeping problem?
    2. Have I been causing this awful sleep famine for the past 8 months? Have I been blogging and complaining about something that is My Own Fault?
    3. What if I didn't explain my case correctly? Why do I feel like you are being smug and condescending because you think I'm overreactive and incompetent? Is it real or am I just too tender today?
    4. Is there any way I can not feel so much like crying right now?
    5. Is there any way I can erase this appointment and return on a new day with someone who walks in File In Hand?
    6. What do I do when he keeps getting up? What do I do when he asks to go to bed at 7:30? How do I deal with waking up my three year old on Saturday afternoon after only 40 minutes of sleep when he's used to 2-3 hours? (They said, "He'll probably be kind of crabby. Crabby is not the word, lady! =))
    7. What do I do if putting him to bed at 8pm ends with him falling asleep at 9pm?
    8. How can I hide my impending tears while you make sure no one else is planning to see us today and send me on my way with a piece of paper outlining the number of hours children require at varying ages and a business card with the word "melatonin" scribbled on the back?

I can't think straight. I have no memory. I cannot form sentences. I almost turned left from a one way into the opposing lane's traffic lane. Does that make sense? I was turning like they were both one ways. I tried to turn into oncoming traffic from a street and onto a street I drive on every day. Punkin ran away from me at the grocery store and I didn't even notice. I forgot until 3/4 into the line of questioning today to mention that 2 of my family members have sleep apnea. (There is, by the way, "a teensy tiny chance" that Punkin also has sleep apnea, but since the snoring is light and he doesn't stop breathing in his sleep, they don't suspect it. (How am I supposed to know if he stops breathing? I don't know that.)

Maybe if he hadn't showed up unprepared, I wouldn't be so critical. Maybe if I wasn't going through some sort of insecure, vulnerable stage I would be relieved and happy and just keep moving forward. Maybe I would be hopeful.

What I should have been doing for the past few months is keeping a chart. So I will start keeping a chart and jarring him awake during both of our happy weekend nap times and keep him up an hour later. And when that works -- cause it better work cause you know if it doesn't I will lose my Saturday afternoon 2 hour siesta Forever -- I will be better equipped to deal with the wakefulness during the night. Which is still unexplained.


Kristiem10 said...
This comment has been removed by the author.
Kristiem10 said...

Erika, I am so sorry your appointment went so badly. That doctor sounds incompetent. This is NOT your fault. Almost all the fragile x kids I have ever met or heard of have sleep issues. And, if you and Punkin need a nap on weekend afternoons, you take one. Do not worry about what they say. They aren't living your life. I have had so many disappointing experiences with doctors, I am jaded. When Drew had his seizures, the darn doctor kept telling me that she thought he had AD/HD. Of course he does, it comes from the Fragile X, but that's not why I am here! I left feeling frustrated and ANGRY. So, I totally get where you are coming from on this. I haven't been on the listserve lately, but have you brought this up on there? So many helpful people there. Even if they just comiserate.

Are you within driving distance to Chicago? Call Dr. Elizabeth Berry-Kravis. She is wonderful, and can help you.

Hugs to you. Email me if you want to talk.

FXSmom said...

oh Erika I am sooo sorry this went so bad. I have had appointments with sleep doctors for Kevin that have ended much the same way. We felt so disheartened and ... stupid. I think a lot of these sleep doctors got their license in a cereal box. I'm with Kristie. You can stop now. As a mom you know that something is not right with your son. Call, Dr. Kravis or someone. Get someone on your side to help you. Even an advocate...they are good with more than teachers :).

We are all here for mental support and a sounding board.

Jennie said...

Oh, Baby. Mental hug from me. I agree with the moms - you know what your child needs sleep-wise. I strongly disagree with trying to mold a child's sleep times - I don't think it works very well at all. Don't feel stupid and overreactive - being treated badly does not mean you are overly sensitive or incompetent. You are a wonderful, wonderful mommy. I prescribe spending the weekend in your pajamas, and seeing if Opa could maybe watch the man for a few hours. LOVE YOU!

Laura said...

Lion, I am so, so sorry. I am consistently outraged at the amount of money that doctors make when they can't even walk into an appointment having read through the file. You know David better than anybody. Is there someone else at the clinic, or another clinic, who you could set up an appointment with instead? Or is that just prolonging your own agony?

Moms know best. If you want to give the doctor's recommendations a try, I'm with you. But if the results are not helping but making it worse, then go with your instincts. I love you.

Umma said...

So very frustrating. I think we've all probably had appointments that go this way and working on fragmented sleep as you are will make feel even more fragile. I wish I had a magic wand. I hope you are able to find someone else who will listen and take action.

Anonymous said...

I am so sorry you had such an awful experience.
I wish there were some ideas I could give you but Robert never had any sleep issues like David.
Follow Kristie's advice about going on the listserve. Maybe someone there will have some brilliant idea for you to try. Also, maybe you could write to someone at the National Fragile X Foundation for some help.
Obviously if David is taking a two hour nap he needs the sleep...and you need the break. Nothing wrong with that!
You aren't a good mother. You are a GREAT mother!
Hang in there!
Love you, Aunt Kim