Sunday, February 10, 2008
Warning: More SAD stuff about Noah. Don't read if you are going to be depressed.
I have already learned about myself that I am the kind of person known as "Highly Sensitive." This does not refer to how kindly I treat people, but instead to how emotionally connected I am to everything that happens to me. So I take things a bit harder than others, maybe get a little more excited about things than others, and generally have more emotional swings.
Today I realized that being a mother for me is actually pretty painful because of all the crazy emotions motherhood is bringing to me. For example, Noah is probably going to have to leave the school that he has been in now for three months. We figured it would happen from the beginning, but now we know for sure. So obviously that's sad. It's sad that he is disabled and destructive and that he cries and hurts himself. But the thing is: It's not just sad to me. It is devastating. So two nights ago I couldn't sleep until 4:30 in the morning. I hadn't had caffeine. I just lay there in bed feeling the knot of stress over my heart that will not let go.
When I think of it all. It really, really stresses me out. But it's like a hyper-stress too! It's not just stress, it's hyper-stress. And it's mixed in with hyper-happiness, and hyper-EVERYTHING.
On the good side:
1. I am not apathetic.
2. I am not dead.
3. I am fully engaged in my life and in mothering.
On the bad side:
1. I really can't sleep.
2. I can't put enough in to help Noah daily. I need to be able to work with Noah every day, but I can't. This is hard and directly affects my stress level. On days when I can work with Noah, I feel better. On days when I can't work with Noah, I get the hyper-stress knot on my heart and can't sleep. I think somehow my mind is taking a small, daily sadness and turning it into a mini, daily trauma or something.
3. I want motherhood to be happier and calmer... and somehow it keeps getting more stressful.
So what does this mean? I am not really sure, to be honest.
I've been doing some reading on Post Traumatic Stress Disorder after reading some studies that found that parents of kids with serious illnesses and injuries can often go through PTSD.
I have checked all the criteria in the DSM-IV and I have the criteria. Is there a new DSM-V yet?
Anyway, I am an open book so I really don't mind if people know how I feel. I think that it's possible that Lucy's hospitalization reopened some of the feelings. But I think I have had these issues since Noah's birth.
So... I need to know what to do. Is this the kind of thing you get over? It's weird because I can be really happy during the day, but at night when everything is quiet and has slowed down... the stress emerges and I can't sleep. I pray and that's good... but the thing is. It's not good to be getting that little sleep that many nights a week.
Sometimes, I feel like I have to pretend that having a kid with special needs isn't any different than having a kids who doesn't have special needs. And mostly, that's true.
When you see the facts:
1. Society does not easily make a place for those who are disabled.
2. Life tends to get harder as kids get older if the level of accommodation doesn't grow with the child.
3. Services get cut, programs change, kids age out of the help that was available when they were younger.
4. My son is disturbingly injuring himself to the point that specialists are being called in and he's going to have to go to another program.
It's tough. And if I could homeschool him, I would. It was great. It was stressful but great. But school has a few things they can offer too. And I need a break. But if it keeps getting worse instead of better, we're going to cut our losses and bring him home again. Hopefully by that time I will be able to focus on him a bit more than now. Now, if he was home he would do a lot of wandering and squeezing out lotion and shampoo, and ripping up papers, and dumping out things. It's also not safe because he could potentially hurt himself, if I can't watch him all the time. That's why it is so stressful every night before Scott gets home. It's that last bit of the afternoon from 3-5:30 where I worry the most. And at night I worry about that time the next day. But then I also worry to get the emails home from school, the phone calls, and generally any report at this time from ANYONE concerning Noah. I'm not getting many positives at this time, and that is scaring me. Then he's having major meltdowns several times a day. On Friday, our Homestead worker counted almost 100 times that Noah hit his temple within an hour. And really, he's done much worse than that. The stress of worrying about his brain, his hearing, his skull... it's horrible. It's horrible. And his little arm is scarred from him biting himself.
Noah is so adorable and sweet. It's really an ongoing traumatic experience to see him going through such a rough time, and to be able to do NOTHING, nothing to stop it. I made a little book for him on Friday. It's really cute. It's a little picture book that I made out of stiff baseball covers... you know the hard plastic ones? I wrote a little rhyme...
It's called
Keeping It Cool
I'm not gonna hit my head
I'm gonna stomp my foot instead.
I'm not gonna bite my arm
I'm gonna keep it safe from harm.
Gonna keep it cool
At Home or at School.
It's kinda dorky, I know, but Noah LOVES it. He absolutely loves it and keeps giving me his leg so I can stomp it for him when we get to that part. I don't know why he won't stomp his own foot, but whatever. It's really cute that he likes it.
I'll see if it helps him. I have secured a little more help for this week with Noah. It's not enough, but it's something. Plus Homestead has upped their hours. That's really helpful. I can always count on the Homestead to be there. Even if they can't make it better, they try really really hard. Thank goodness for people who really care. I've had Homestead workers cry with me even. (and laugh and be really happy too, but we're talking about sad stuff right now... I warned you).
Anyway, I'm really having trouble. It's tough. We're not doing so great right now.
I'm just putting it out there. I don't want to hide it and pretend everything's great today. So pray for Noah please. Specifically that he will stop hurting himself. That we will be able to find more community resources. That we will be really happy again. That I can shake the knot of stress off my heart. That Andy and Lucy won't get lost in the shuffle. That Noah won't get lost either. That Noah's life will be really great and happy. If we're praying, let's pray for some miracles too... although lately a tiny improvement would feel miraculous. So let's pray for tiny miracles.
Here are some tiny miracles that you could pray for:
1. That Noah will sit at the table for dinner for 5 minutes one night this week without crying, screaming and pushing the table away. We've been making him do this for awhile. Scott holds him with one arm while he eats with the other. Noah pushes the table away and Andy and I have to keep pushing it back throughout dinner. We are so determined to do this, we just have a conversation while pushing the table back and forth and hopping up and down to bring toys to Noah.
2. That Noah will take three sips or tastes of food this week. Any food, any liquid, even water.
3. That Noah will use his speech this week. Let's see... a tiny miracle would be maybe two words a day that are unprompted. Perhaps a request for something.
4. That Noah will not pull anyone's hair, pinch, bite, or hit anyone more than one time a day this week.
5. That Noah will not have more than two tantrums a day this week.
6. That I will be able to fall asleep before 2:30 am every night this week, 1:30 would be nicer, 3 is more probable, so I'll compromise with 2:30.
7. And the last tiny miracle would be for Lucy to sleep in the late afternoon before Scott comes home so I can focus on Noah and his safety and maybe even get some table work in with him.
8. Heck, I'll throw in one for Andy too. Let's see, how about a tiny miracle for Andy would be that Andy is able to jump on his pogo stick 11 times in a row (his current record is 10). Let's up it to 12. Hey this is prayer, and we can ask for anything, God doesn't HAVE to do it. And Andy has worked so hard on this!
Anyway, those are my prayers for this week. Some silly, some not. All important.
Good thing only a few people read this, or this would probably be a post classified as TMI.
I have already learned about myself that I am the kind of person known as "Highly Sensitive." This does not refer to how kindly I treat people, but instead to how emotionally connected I am to everything that happens to me. So I take things a bit harder than others, maybe get a little more excited about things than others, and generally have more emotional swings.
Today I realized that being a mother for me is actually pretty painful because of all the crazy emotions motherhood is bringing to me. For example, Noah is probably going to have to leave the school that he has been in now for three months. We figured it would happen from the beginning, but now we know for sure. So obviously that's sad. It's sad that he is disabled and destructive and that he cries and hurts himself. But the thing is: It's not just sad to me. It is devastating. So two nights ago I couldn't sleep until 4:30 in the morning. I hadn't had caffeine. I just lay there in bed feeling the knot of stress over my heart that will not let go.
When I think of it all. It really, really stresses me out. But it's like a hyper-stress too! It's not just stress, it's hyper-stress. And it's mixed in with hyper-happiness, and hyper-EVERYTHING.
On the good side:
1. I am not apathetic.
2. I am not dead.
3. I am fully engaged in my life and in mothering.
On the bad side:
1. I really can't sleep.
2. I can't put enough in to help Noah daily. I need to be able to work with Noah every day, but I can't. This is hard and directly affects my stress level. On days when I can work with Noah, I feel better. On days when I can't work with Noah, I get the hyper-stress knot on my heart and can't sleep. I think somehow my mind is taking a small, daily sadness and turning it into a mini, daily trauma or something.
3. I want motherhood to be happier and calmer... and somehow it keeps getting more stressful.
So what does this mean? I am not really sure, to be honest.
I've been doing some reading on Post Traumatic Stress Disorder after reading some studies that found that parents of kids with serious illnesses and injuries can often go through PTSD.
I have checked all the criteria in the DSM-IV and I have the criteria. Is there a new DSM-V yet?
Anyway, I am an open book so I really don't mind if people know how I feel. I think that it's possible that Lucy's hospitalization reopened some of the feelings. But I think I have had these issues since Noah's birth.
So... I need to know what to do. Is this the kind of thing you get over? It's weird because I can be really happy during the day, but at night when everything is quiet and has slowed down... the stress emerges and I can't sleep. I pray and that's good... but the thing is. It's not good to be getting that little sleep that many nights a week.
Sometimes, I feel like I have to pretend that having a kid with special needs isn't any different than having a kids who doesn't have special needs. And mostly, that's true.
When you see the facts:
1. Society does not easily make a place for those who are disabled.
2. Life tends to get harder as kids get older if the level of accommodation doesn't grow with the child.
3. Services get cut, programs change, kids age out of the help that was available when they were younger.
4. My son is disturbingly injuring himself to the point that specialists are being called in and he's going to have to go to another program.
It's tough. And if I could homeschool him, I would. It was great. It was stressful but great. But school has a few things they can offer too. And I need a break. But if it keeps getting worse instead of better, we're going to cut our losses and bring him home again. Hopefully by that time I will be able to focus on him a bit more than now. Now, if he was home he would do a lot of wandering and squeezing out lotion and shampoo, and ripping up papers, and dumping out things. It's also not safe because he could potentially hurt himself, if I can't watch him all the time. That's why it is so stressful every night before Scott gets home. It's that last bit of the afternoon from 3-5:30 where I worry the most. And at night I worry about that time the next day. But then I also worry to get the emails home from school, the phone calls, and generally any report at this time from ANYONE concerning Noah. I'm not getting many positives at this time, and that is scaring me. Then he's having major meltdowns several times a day. On Friday, our Homestead worker counted almost 100 times that Noah hit his temple within an hour. And really, he's done much worse than that. The stress of worrying about his brain, his hearing, his skull... it's horrible. It's horrible. And his little arm is scarred from him biting himself.
Noah is so adorable and sweet. It's really an ongoing traumatic experience to see him going through such a rough time, and to be able to do NOTHING, nothing to stop it. I made a little book for him on Friday. It's really cute. It's a little picture book that I made out of stiff baseball covers... you know the hard plastic ones? I wrote a little rhyme...
It's called
Keeping It Cool
I'm not gonna hit my head
I'm gonna stomp my foot instead.
I'm not gonna bite my arm
I'm gonna keep it safe from harm.
Gonna keep it cool
At Home or at School.
It's kinda dorky, I know, but Noah LOVES it. He absolutely loves it and keeps giving me his leg so I can stomp it for him when we get to that part. I don't know why he won't stomp his own foot, but whatever. It's really cute that he likes it.
I'll see if it helps him. I have secured a little more help for this week with Noah. It's not enough, but it's something. Plus Homestead has upped their hours. That's really helpful. I can always count on the Homestead to be there. Even if they can't make it better, they try really really hard. Thank goodness for people who really care. I've had Homestead workers cry with me even. (and laugh and be really happy too, but we're talking about sad stuff right now... I warned you).
Anyway, I'm really having trouble. It's tough. We're not doing so great right now.
I'm just putting it out there. I don't want to hide it and pretend everything's great today. So pray for Noah please. Specifically that he will stop hurting himself. That we will be able to find more community resources. That we will be really happy again. That I can shake the knot of stress off my heart. That Andy and Lucy won't get lost in the shuffle. That Noah won't get lost either. That Noah's life will be really great and happy. If we're praying, let's pray for some miracles too... although lately a tiny improvement would feel miraculous. So let's pray for tiny miracles.
Here are some tiny miracles that you could pray for:
1. That Noah will sit at the table for dinner for 5 minutes one night this week without crying, screaming and pushing the table away. We've been making him do this for awhile. Scott holds him with one arm while he eats with the other. Noah pushes the table away and Andy and I have to keep pushing it back throughout dinner. We are so determined to do this, we just have a conversation while pushing the table back and forth and hopping up and down to bring toys to Noah.
2. That Noah will take three sips or tastes of food this week. Any food, any liquid, even water.
3. That Noah will use his speech this week. Let's see... a tiny miracle would be maybe two words a day that are unprompted. Perhaps a request for something.
4. That Noah will not pull anyone's hair, pinch, bite, or hit anyone more than one time a day this week.
5. That Noah will not have more than two tantrums a day this week.
6. That I will be able to fall asleep before 2:30 am every night this week, 1:30 would be nicer, 3 is more probable, so I'll compromise with 2:30.
7. And the last tiny miracle would be for Lucy to sleep in the late afternoon before Scott comes home so I can focus on Noah and his safety and maybe even get some table work in with him.
8. Heck, I'll throw in one for Andy too. Let's see, how about a tiny miracle for Andy would be that Andy is able to jump on his pogo stick 11 times in a row (his current record is 10). Let's up it to 12. Hey this is prayer, and we can ask for anything, God doesn't HAVE to do it. And Andy has worked so hard on this!
Anyway, those are my prayers for this week. Some silly, some not. All important.
Good thing only a few people read this, or this would probably be a post classified as TMI.
Comments:
I just read this(I don't know why I didn't see it before)and wanted to let you know that I am praying for you. I am praying for big miracles and small miracles for all of you.
Love,
Linda
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Love,
Linda
