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My sons health and my absent RAH. need encouragement/this is a crossroads for me.



My sons health and my absent RAH. need encouragement/this is a crossroads for me.

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Old 06-16-2012, 06:44 AM
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My sons health and my absent RAH. need encouragement/this is a crossroads for me.

HI,
Many of you know my story.
I have not been completely thorough with all the details since I have been overwhelmed by the truth of it.
My RAH is 20 months sober, just bought himself a house, and is, I believe dealing with some serious mental issues, which he now admits are rather detrimental to our son.

My RAH always had anxiety. the alcohol masked some of the more obvious symptoms, and over the last two years they have become frightningly blaring.
One thing that alcohol masked for him was a tic, or tics.

Now, our 7 year old son had an eye that seemed to just be lazy when he was four. I took him to the eye doctor for check up and plans to remedy it. It turned out to be a benign brain tumor. It is on the carotid artery and he cannot be operated on for that. He has had three eye surgeries to correct the eye sight (He had double vision for a year.)
He has stomach pain, randomly, and we do not know if it is due to vertigo, or other. The doctors are very happy that it is 'only' a benign tumor, but his eye will never be the same. The tumor has attached and fixed to a nerve. It has not grown since we first found it. This is a blessing, and I know that.

When RAH came out of rehab, and came home he was nervous, having panic attacks. I put him out for a few days initially, as I was nervous about sons exposure to that..
Then husbands tics began. Within days. I was shocked and confused when our son also began to tic. A grimace tic. He will pull his mouth back in repetitve motions. We went to several neurologists, trying to ascertain if it was related to the tumor. They say absolutely not.
I started son with atherapist. A very good one. 20 months ago, for extra support. The therapist just happen to specialize in motor issues.
Son has gone transiently in and out of various tic episodes lasting for up to 3 months at a time. Some days better, some days worse.
WHen he started 1st grade, the teacher told me that he was vocalizing in a distracting way. It came and went. And the jerking movements got worse, but especially at bedtime, to the point where he will sort of flail in the bed. As he got older he started to express his knowledge that he is not normal, wants to know why.
Doctor has diagnosed him with Tourettes syndrome. Mild. He says it is a spectrum disorder, and people can have it and you may never know. He also says that it can disappear from kids at around age 15.
Several days ago, just as RAH admitted his anxiety and says he will seek help, (He is still out of the house, sees son infrequently, cannot keep to a schedule, which is upsetting to son) our son began to loudly vocalize tics. They started with a tiny throat 'uh huh' sound every few seconds. It inhibits his eating, his speaking.
Doctor is clear that he feels sure RAH also has the exact same syndrome, only has managed to mask it with and without alcohol for years. RAH has spoken to our son about his own tics in the therapy setting, but then stopped coming to sessions altogther.

LAst night was heartbreaking. Son's vocalizing went berzerk. There is a new sound, comes up after the uh huh sound, and it is a whimperish high pitch. There was no stress triggering it, just happened.

I laid with him for hours. He could not sleep, as he kept waking himself back up each time the throat triggered the sounds. He sat up and asked me to make it stop.

I got a text from RAH asking how son's night went. I am trying LC< or NC. I wanted to explode.
He is out. He is "trying to move on with his life, because he wants happiness now, and he is going to date." ( he said this three days ago.)

He can date all he wants, and he can breeze around town. I kind of dont care, but man, am I angry that son and I are shouldering this alone. He is so scared, but also quite brave and so, so smart.

Why does he have to have a bad eye, a tumor AND Tourettes syndrome?
Why does he also have to have a disordered dad, instead of one who takes care of his own issues so that he can be there for son?

I am sad. i feel swamped, and there is absolutely NO PLACE for MY sadness, anger, and resentment, because this disorder is highly stress driven. I have to stay clear, up, on point.
I dont drink anymore, I have friends, but...This is just all too much.
I just need some encouragement.

I do not want to re engage with him, out of feeling so alone, as he really just complicates everything. I did not engage last night, but man, I really wanted a co parent that I could talk to.

When we first got the diagnosis of tourettes, I called RAH (about 9 months ago), and he fell to pieces. Suddenly I was nursing HIM!.

I can do this, right?
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Old 06-16-2012, 07:04 AM
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((((((((((Buffalo66))))))))))

Yes you can do this.

Prayers going out for you and your son.

I understand how you feel about wanting a co-parent that you can lean on.
However, I do believe, that your policy right now of LC or NC as much as
possible is the correct one.

Have you searched around the net for some groups of moms that have a
Tourette's child? I am sure if you find one that is busy with mom's posting
that it would be a big help for you, as some of them will have been doing
this for a while, and may have learned some 'tricks' and routines, and/or
other things that will be a help to you.

I know about Tourettes but have no clue as to what to suggest to help you
with being the primary and really sole cartaker for your beautiful son.

I also know, that it is very hard for you to get time to talk with a therapist
on a weekly basis. Right now and for some time now, your RAH has known
how to push your buttons, the correct buttons to get a 'rise' out of you. The
more you learn how NOT to react, the better your inner peace and serenity
will become.

I sure wish that right now I lived close to you as I would be more than happy
to spend time with your son, to give you some respite from your 24/7 care-
taker role.

Sending good thoughts and prayers.

Please remember, when you are stressed to visualize whatever room you are
in, as filled with ALL of us folks from SR walking with you in spirit.

Love and hugs,
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Old 06-16-2012, 07:09 AM
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Buffalo 66,

You can do this and know this... I am with you in spirit and in prayer. I promise to pray for you and your son everyday... I wish I could do more some how... really.

Life is so unfair and sadly some children get dealt a really rotten hand. I suffered enormously as a child and was a deep and pensive thinker trying to reason out life at an early age.

It sounds like you are doing an AMAZING and COURAGEOUS job of mothering this child under the most difficult of circumstances. I had a devastating diagnosis for my daughter who at 16 we discovered that she had a very serious chromosome issue that we believe was caused by her father's drug usage (we cannot be sure but it is quite possible).

I can tell you I know how it feels to be so alone... her father is simply useless although allegedly "recovered". She has physical issues and will never be able to have children and we have dealt with it one day at a time.

Please feel free to PM me if you want to someone to talk to you that understands completely how you are feeling...but know this... you can do it!

Have you sought out any support groups for Tourettes? There is an organization for my daughters syndrome and we took advantage of that organization and the best doctors in the nation in the early years. She is 25 and doing great now... very beautiful and successful and when she is ready for kids... heck... we will just find one that needs a loving family that doesn't have one!
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Old 06-16-2012, 07:18 AM
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Aww, I'm sorry that he is going through so much! My son has Tourette's, too, but no one on either side of the family ever had tics before. TS has a lot of comorbid conditions like anxiety, ADHD, OCD, depression, learning disabilities, etc. My son has had the spectrum of some of these over the past 5 years since he started ticcing but the ADHD and some processing disorder stuff seems to be the worst.

There are triggers for tics and you may want to keep a journal to see if you can find out what makes his worse and then write down the severity of the tics, too. Stress, both good and bad, always makes my son's tics worse. Even the full moon can make his tics worse. Red food dye, caramel color, fake sugars, caffeine, and MSG make his worse, too. Oh, and when his seasonal allergies flare up, so do his tics. Some of his tics are more OCD-like than TS like. The ones that are more OCD are the tics that he can somewhat control, like a habit that has developed and it's hard for me to decipher the difference because if you bring attention to their tics, the tic is bound to get worse. Vocal tics are tough, we've not seen too many of those. Mostly throat clearing or sniffling and they never lasted more than 2 weeks at a time.

My son started ticcing the day he turned 9. It's like someone flipped a switch inside his brain and it turned them on. He's 13 now, and he's doing great. I am more concerned about handling his anxiety and other problems than the tics themselves but when they started I was freaking out. You're doing a great job as a mom, just keep being his advocate. A friend of mind had a son who started with a screaming tic when he was 12 and it continued until he was 16 and then switched to more motor tics like what we deal with mostly. I can't imagine how hard these tics are for him, breaks my heart because I know how miserable it can be. Does your son play sports? If so, tell him about Tim Howard. Tim is a professional soccer player and is a goalie. He went to my high school but graduated a few years after me and he struggled with OCD and tics, still has them, too. He's been very successful at his sport and is an advocate for TS.

I know how hard it is to feel alone in all this. My AH just never seemed to notice or care. He'd just blow it off, didn't attend any doctor appointments with us, etc. I was just the opposite, and I got crazy obsessed trying to figure out what was going on. I used to be so attuned to watching him and paying attention to every movement, every repetitive sound, etc but I realized that I was the one making him more nervous and self conscious about the tics. When I tell people he has TS, most look shocked and have no idea. Oh, FYI: alcohol makes tics worse usually because of how it affects dopamine. Marijuana can make tics better so I'm surprised that your RAH saw tics get better while drinking. I guess everyone is different. Sending you lots of support today!
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Old 06-16-2012, 08:17 AM
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It sounds cliche, but you will be stronger for this. Have satisfaction of knowing you were the strong mother. You were the one to weather the storm for your son. They walk away and walk away from responsibilities and you aren't. Be proud of yourself. Try to reach out as much as possible so you are not alone. I'm sure there are support groups and especially Alanon. You can do it Buffalo66, and when you feel low, come on SR and post and we will encourage you! You are not alone and you never will be.
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Old 06-16-2012, 08:18 AM
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Do you still live with your alcoholic husband?
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Old 06-16-2012, 10:07 AM
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I'm so sorry you have this enormous stress. There's nothing harder than seeing how powerless we are when someone we love gets sick but you are a huge comfort to him. God bless, I'll pray for you.
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Old 06-16-2012, 10:13 AM
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I am truly sorry that you are going through all of this. It just seems so damn unfair when kids are chronically ill - especially when the one person that really is supposed to care just doesn't.

But on the other hand, you don't have to deal with this PLUS a drunk, disrespectful, angry drunk man.


TSA Home Page

This is the website I Googled for the National Tourette's Syndrome Association. They appear to have many support groups, information, etc. for people with Tourette's and a special section for kids and teens.

At one time or another, we all felt helpless and hopeless with how our lives were going. Then we came here, or went to Al-Anon, or counseling, or something. Maybe this website has something for you....
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Old 06-16-2012, 11:51 AM
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I am with Liza on this one...keeping a trigger journal and watching him closely. Have you tried any naturopaths? Could be something you can control through diet and supplements. Brain chemistry is something we don't know much about, but I do know the synthetic medicines for these brain disorders can mess with the entire system, so making sure to balance it out with the missing nutrients can ease many symptoms.

You have an awful lot on your plate, but you are a strong woman and you can handle this. What may help you is just considering yourself a single mother...drop any and all expectations of his Dad for support right now, and press on yourself. Sounds as if you are the only one capable of being there for your son anyway.

Hugs and prayers,
~T
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Old 06-16-2012, 12:07 PM
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I'm sorry you are going through so much pain. I hope you will find a way to help your son. I'm sure with your love and dedication you will find some way.

Best wishes, and hugs,

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Old 06-17-2012, 06:35 AM
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Thanks, everybody. I am looking for a support group for this in my town. They have one listed. I am going to follow up tomorrow. Its very tough, I didnt think it would be this tough but the vocalizing, it is very disruptive for him, and his friends are asking now about it.
Hard to watch feeling so powerless.

Pretty soon i will need a support group for my support group.LOL.

ANy way, son wants to see his dad today for Fathers day. Whatever ,
I told him that going for ice cream or a smoothie would be perfect.
(Short sweet, not in my home, not enough time for A to start tweaking, and they will be a few blocks from the house.)

A agreed, and so, they will get ice cream and walk back to my house.
I have been keeping a journal listing when the tics set in. Unfortunately they do tend to come on when he is around his dad, or when his dad has bad anxiety.

I sent A a text and asked him to evaluate the situation thoroughly and if he is in a bad state to please respect son and reschedule.

Its all I can do. He has rights. I feel like it is a safe and clear plan for fathers day, with limited contact for son and RAH.
sigh.

Everyone have a god day. Thanks for your words. They do help to keep me afloat
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Old 06-17-2012, 08:19 AM
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Originally Posted by Buffalo66 View Post
I have been keeping a journal listing when the tics set in. Unfortunately they do tend to come on when he is around his dad, or when his dad has bad anxiety.
This part really got my attention.

As you said, I do not know the whole story since I can only go by what you've posted over the years, but from where I sit, here is what I see.

For a long time it seems, you have been trying to force this man to step up and be a responsible father to your son. He appears to have little or no interest in being such a person. All your attempts to make him into a good dad have caused you much stress and anxiety. Not only does it appear that it is not in the best interests of your son, it also gives your AH a lot of power over you. Thus the pushing of the buttons...

I'm not advocating denying visitation to your AH. But, I think if you were to stop pushing so hard on him to be a father, he would likely not make much of an attempt on his own. This would free up all the energy you are expending on pressuring your AH and allow you to focus more on the needs of your son. The needs YOU can fulfill. It would also take away the power your AH has over you and give you some peace.

That's just how I see it. I could be wrong.

L
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Old 06-17-2012, 11:10 AM
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Since I posted above I have been thinking about this and your son's
affliction of Tourettes.

I remembered that my Endocrinologist, yes the doctor I see to analalyze
my blood work every 3 months for my diabetes, has Tourettes. He was
able to get enough control over it to finish high school, finish college,
finish medical school, pass his test to be licensed, and has been practicing
his trade for the last 15 years.

I see him this coming friday, and I will ask him a lot about this and what
helped him and what he would suggest. If you could PM me your area,
he might be able to give some tips for your basic area on whom you might
be able to contact for further help.

In the meantime I continue to seen good thoughts and prayers and I have
put you and your son on the 3 prayer lists I belong to.

love and hugs,
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Old 06-17-2012, 11:20 AM
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I think Buffalo is getting it.
Her A is not able to handle their son for long periods of time, and thus when A's anxiety goes up, so does his son's.
So today, they are going to get ice cream close to the house and if A starts to "tweaking", they are a short distance from Mom.
Yes, forcing any relationship is uncomfortable for anyone, then add on a syndrome like Tourettes it just ramps up the symptoms.

I totally agree with you LTD. Let the AH stay away if he wants, all he wants, and keep the visits that son desires to a minimum. A short walk for ice cream is good.
Uh-oh! LTD how much do I owe your therapist now? We must be in the millions by now.
I will be buying a picture soon. I go to the gallery to just look and get soothed.
Ahhhhhh.

Buffalo66,
I see you letting go of your son's father. Your son needs you, and your are not powerless, not at being a mom.

Beth
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Old 06-17-2012, 11:38 AM
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Originally Posted by laurie6781 View Post
Since I posted above I have been thinking about this and your son's
affliction of Tourettes.

I remembered that my Endocrinologist, yes the doctor I see to analalyze
my blood work every 3 months for my diabetes, has Tourettes. He was
able to get enough control over it to finish high school, finish college,
finish medical school, pass his test to be licensed, and has been practicing
his trade for the last 15 years.

I see him this coming friday, and I will ask him a lot about this and what
helped him and what he would suggest. If you could PM me your area,
he might be able to give some tips for your basic area on whom you might
be able to contact for further help.

In the meantime I continue to seen good thoughts and prayers and I have
put you and your son on the 3 prayer lists I belong to.

love and hugs,
I would love to hear what he has to say! My son just started a new tic yesterday. Well, maybe it's not new, but it's one I haven't seen for a while. His right eye is squeezing shut, it used to be that his left eye was the one that got the tics the most. Oh well, doesn't seem to bother him.

I also wanted to add that my mom has a friend who is a very smart retired engineer who worked for Exxon for 30 years and he has TS. His tics are still very noticeable and my son really likes seeing that other people have tics but manage them just fine.

It's funny, one day we were driving around near my mom's house in VA and we stopped at a light. My son looks at the car next to us and says, "Hey, a kid in the back seat has the same tic as me!" Then, we were at a local football game and he saw another boy with tics and made the same comment. Years ago, I probably would have never noticed people with tics, now I see them wherever I go and I see all ages with tics. I was talking to a friend recently and we were talking about our kids and I mentioned son's tics and she said, "Wow, I never noticed. You know, my daughter just started with tics too, and I was so sad for her. It's good to hear that most kids handle them very well."
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Old 06-17-2012, 03:20 PM
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Originally Posted by LaTeeDa View Post
For a long time it seems, you have been trying to force this man to step up and be a responsible father to your son. He appears to have little or no interest in being such a person. All your attempts to make him into a good dad have caused you much stress and anxiety. Not only does it appear that it is not in the best interests of your son, it also gives your AH a lot of power over you. Thus the pushing of the buttons...

I'm not advocating denying visitation to your AH. But, I think if you were to stop pushing so hard on him to be a father, he would likely not make much of an attempt on his own. This would free up all the energy you are expending on pressuring your AH and allow you to focus more on the needs of your son. The needs YOU can fulfill. It would also take away the power your AH has over you and give you some peace.

That's just how I see it. I could be wrong.

L

LTD, This is somewhat accurate, but I do think its a little askew. I have not tried to force him as much as continued to buy inti=o a fantasy of perfect recovery. When A was drinking, it was very clearly an unsafe situation, and I kept son at a distance, while maintaining a relationship w his dad.

Since his sobriety began 20 months ago, the areas have been pretty grey FROM INSIDE of it. He would have great stretches, then his mom and I thought, Oh...he's over that initial rough time.

Then he would dip...it began dawning what we feared, was the his issues did indeed go far deeper than alcohol.
It seems from the ouside that all of this would be a no brainer, but...I am here, like the ant, not the hawk. I cannot see the bigger picture as clearly as quickly, because I am looking at a little boys face begging me to see his daddy.

He is not as disinterested as implied, but he does not walk all that talk. So you are right there.

WHat you describe, in letting him "go", kind of let it be what he makes it is what I am in process of. My big step was getting RAH into the shared counseling with son, so that I can get out of the go between role. He can deal direct with counselor, he can communicate direct to son. That did not backfire as much as define the circumstances for everyone involved, save for RAH.

Everyone became very clear very quickly that he is walking a completely crooked line, even a convoluted one of justification and manipulation.

Why? Because he is mentally ill, at least Half of the time (kiind of a LOL, but true), either way. No. It does not matter. HE is not well, he does not take the initiatives required, and I am phasing him out.

It may seem like babysteps, but these are massive strides for me.

Your feedback is always helpful and insightful, thank you,
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Old 06-17-2012, 04:21 PM
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I have no magic words of wisdom, but I can offer a hug and a little cyber-support! I think you are doing really well, and hope that you will be able to assemble a team of caring professionals for your precious boy!!
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Old 06-17-2012, 04:39 PM
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I don't have any ESH to share Buffalo66. But ((((((hugs)))))). I have those and hope you can feel them.
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Old 06-17-2012, 07:50 PM
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Buffalo,

You can do this and you will.
And I can relate to some of it.
One of my kids ha a lot of health issues. All of them have severe emotional trauma (two diagnosed with PTSD). And I'm it. I'm it. It can be infuriating at times. I want AXH to SUFFER and see the suffering these kids go through. I want him to be awake with me, cry with me, consult numerous doctors with me and get stupid insulting responses with me. But I don't want it for the kids' sake. I want it because IT IS UNFAIR DAMMIT that I'm dealing with the fallout from all of this. The kids? Frankly, they're so much better of now that he's NOT involved.

It's overwhelming. So do what you already know how to: Take it one thing at a time. One tic at a time. One new behavior at a time. And deal with it as it comes. Don't buy trouble from tomorrow. Just get through today. And remember to take care of yourself. Even if all you get is five minutes of listening to your favorite song before you fall asleep at night. Hugs.
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Old 06-17-2012, 08:37 PM
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Lilamy thanks so much for that post , Very helpful to me!
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