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I need help with coping skills


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Hi all. Some of you may remember me from last year, but it's been quite awhile since I've posted. Sine then, life has become hellish in some ways. My son was diagnosed 2 years ago with TS, OCD and now has the dx of a mood disorder. He picks up the mood of anyone around him and that's how he is for the day, uless an new mood becomes stronger around him.

 

What I need now is not the dietary support but the mental support from other TS moms. I need coping skills. I need to know how to get through the day. I need to know how to deal with and cope with my son and how to teach him how to cope and deal with his "disease'(s)(for lack of a better term at this moment. I need to know that I'm not 'damaging' my son in ways that he won't be able to grow up and have normal relationships. Below is what I have written to the founder of the Joshua Center in Kansas City, MO. It basically outlines what we're going through right now.

 

For a little more background, Ethan was diagnosed almost 2 years ago, in 2nd grade. We have learned a lot on our own, particularly what you've written below, and we try not to ask him to 'stop' ticcing. Occasionally, however, we do ask him to try a little control over them for a short period of time. He has a touching tic that makes it virtually impossible to take him to the store, though we continue to try. He also obsesses about buying things, way beyond what a typical 10

year old 'wants'.

 

Defiance is a daily obstacle. Minute by minute, hour by hour, day by day. He refuses to do things. Mainly his work. We understand that a lot of it is coming from the sense of being overwhelmed and we try to break it up into smaller amounts. We have basically accomplished almost nothing in the last 3 days as far as schoolwork is concerned. We have tried incentives (extra playstation time, extra computer time, etc, things that he's come up with for incentives). We've tried restrictions on his tv, computer, playstation, etc as reprimands for not getting things done. We have tried many different things and are now looking into a tutor for the math. The fact of the matter is that he just "won't" do anything we ask. He will often argue to the point of utter dissolution of the communication. He has to have the last word, due to his OCD. He will fight tooth and limb to be able to finish a sentence, no matter how inappropriate it is or angry we get. We

understand that this is his OCD at work in most cases. He has to be first in line, everytime. He won't shower, won't change his clothes, etc. Obviously, we do get him to do some of these things but it's really hit or miss. What works today certainly doesn't work tomorrow. It's as if he spends the night planning how to get out of things the next day.

 

He has sleep issues so he takes 1-3 mg of melatonin at night. This has been approved by his doctor. He sees Dr. Erenberg of the Cleveland Clinic. He

also takes Digestive Advantage for lactose intolerance. We try to limit his refined sugar because we believe he has an intolerance to it. High amounts

of sugar or refined sugar on a regular basis seems to increase the tics. When we pull him off, his tics slow down. He says he likes to be on sugar

because he feels good, but says he hates some of his tics. Most of the tics only bother others, not him.

 

Another huge obstacle for us is the negativity. Ethan will continue to push until a negative outcome is reached. It's as if he has to justify that he's

bad so he chooses things or words or fights that will ultimately end negatively for him. No matter how hard we try to ignore his attempts,

ultimately, we get to the point where it has to stop. He does rage, and this year has been particularly difficult in that his rages have elevated.

We've tried different strategies such as restraint, walking away, installing a punching bag (which he was all for until we got it and now it just hangs

there), incentives, etc. We try to be very consistent in our discipline but it feels as if it's no use. We lead a fairly hectic life with my part time

job and with both of my parents terminally ill. I do understand that this adds to the stress in the household. It is difficult for me to balance all

of this, but I try to be calm with Ethan. I also know that I have become somewhat selfish at times and that I'm not the best role model at times

either.

 

We reassure Ethan that although he's 'different', he's not. We try to help him through his struggles each day, but sometimes it seems that we're the

ones making the excuses for why he 'can't', yet at the same time telling ourselves and him that it's not an excuse. He also seems to feel little to

no remorse when he does something inappropriate or outright wrong. Whereas most other children would at least feel some guilt about , say, hitting

another child, or taking something without permission, Ethan does not. He only shows happy (in a pretty hyper way most of the time) and negative.

Occasionally he will cry out of frustration and sadness, but the sadness only seems to really come when he's had the negative outcome.

 

He feels that the reason he has no friends is becuase he has TS and OCD. We've told him this is not the case. However, he does have a lot of

trouble making and keeping friends.

 

This covers a lot of what we're currently going through.

 

PLease feel free to privately message me. I think my email is on my profile. If not, let me know and I'll post it.

 

Thank you for any advice you can offer.

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((((((((((brink)))))))))))

 

have you done any cognitive behavioral therapy for your son?

finding a compassionate caring therapist to help with CBT can make a big difference (care tho to avoid therapists who want to "change" him as opposed to help him cope with who he is!)

 

it is real hard to know where to draw the line on what is being caused by the disorders and what is willful acting out in our kids and so I do really feel for you

 

is he taking anything for the OCD/serotonin? my son's OCD has always been a far bigger problem for him than the tics and he simply has to keep up his supplements to elevate his serotonin or he spirals down.

 

sorry such a short post but I need to start working. just wanted to leave that hug and some of the things that worked for us.

 

I hope that you are managing to take some time for you as you need to be able to regroup and breathe to have the strength and patience. I will be keeping you and your precious son in my prayers

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((((((((((brink)))))))))))

 

have you done any cognitive behavioral therapy for your son?

finding a compassionate caring therapist to help with CBT can make a big difference (care tho to avoid therapists who want to "change" him as opposed to help him cope with who he is!)

 

it is real hard to know where to draw the line on what is being caused by the disorders and what is willful acting out in our kids and so I do really feel for you

 

is he taking anything for the OCD/serotonin? my son's OCD has always been a far bigger problem for him than the tics and he simply has to keep up his supplements to elevate his serotonin or he spirals down.

 

sorry such a short post but I need to start working. just wanted to leave that hug and some of the things that worked for us.

 

I hope that you are managing to take some time for you as you need to be able to regroup and breathe to have the strength and patience. I will be keeping you and your precious son in my prayers

 

Thank you. He started Sertraline 50 mg about 4 weeks ago. We were told that it takes 6-8 weeks for it to 'kick in'.

 

I chose to make today a better day. We went to the craft store and bought some stuff and made Valentine decorations. We were able to incorporate a little bit of schoolwork too. So overall today was better. But I still need other skills to be able to get through tomorrow and the next day and so on.

 

I appreciate your willingness to help.

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brink,

 

I'm so sorry to hear about this rough patch you all are going through.

 

One thing I have learned about homeschooling, is the teachers at the school we do our homeschool work from stress a lot on not worring so much about some subjects. They try to make it less stressful for parents who have to juggle a lot and also homeschool their kids. History and science are repeated so much throughout the grades that it is those subjects that parents are not to worry about so much if their child is struggling. I would think for parents who have their kids in public school the same rules would apply. Keep the math, English as the most important. You could always take your kids out for the day on a field trip to some historical sight near your home to educate in history. (battle ground or if you live on the west coast something that is part of the wests history) Or take them to a pond with a microscope and look at what's floating in pond water for science. These little things help with those subjects without the stress of hammering home the homework.

 

I would play games with my kids and we would find the (object of a preposition) by hide and seek. Once the child was found all the kids would say which prep. the hider was using. (Like UNDER the table, or UP on the top bunkbed, or BESIDE the fridge.)

It was so much fun and the kids really got it. That was a little idea to help with the schoolwork stress.

 

Now for you... find your special time during the day to do what makes you happy. Reading , exercising, taking a long bath ect... I found so much comfort at church.

A Bible study, or singing in the choir, things like that. The one thing that really helped me was my parish Priest told me to pick my battles and only punish him for what he was morally responsable for. With the help of the Holy Spirit this became easy and my son can tell he is not in trouble for every little thing. ( I did yell at him for things he did not need to be yelled at for because my nerves were shot)

 

I wish you much luck and will also keep your family in my prayers.

 

CP

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Hi, I also need help with copings skills as my husband has TS and the most troubling of all the comorbid disorders (of which I think he displays almost all) is his moodiness and outbursts.

 

How much is this his personality and how much is organic?

 

He takes a cocktail of meds but he still has these outbursts and I am really at the end of my rope. Furthermore, I don't want him to set the standard for our children's behaviour.

 

PLEASE HELP!!!

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Hi again Elana

I answered some on the other thread re me also having a husband with TS, as well as my son

 

its a mixed bag I think. Most of the mood stuff is organic and related to the biochemical imbalances that come with TS. Sometimes tho I do feel my guys use their disorders as a "least line of resistance" tho

 

both my hubby and son tried meds but with yuck side effects and in fact the meds seemed to aggravate the condition.

as I mentioned on your thread we have found keeping their diet balanced and free of chemical additives along with correct supplementation to be key in stabilizing mood/OCD

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OMG someone must have been reading my mind because I was just about to do research on this for my son.... His tics are well under control with topomax which i am so thankful for but his frustration and getting upset at simple things such as video games is about to drive me crazy. I am sitting here as I am writing this listening to him yelling and ranting about a paper organi thing he brought home from school that he can't get to work... I mean it is a bit quieter now but 15 minutes ago he was literally screaming and crying because he could not get this to work. I wonder if this is part of his disorder or just his personality too. This has been like this for years... Just seems to be worse lately.

We tried telling him him that if he goes 7 days in a row without an outburst he will get a reward.... but we only got barely one day out of him... I thought if he had something to work towards it would help... Boy I wish I knew what to do with him!!!!!

Mary

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Hi,

I see that extreme frustration in my 8 yr old too. He gets very angry, or very upset if something isn't working out, or it's aimed at his sisters. I also wonder how much of it is just his personality. It's a case of not wanting to blame every bad thing on TS ar /adhd. He sets himself high standards and gets upset with himself if he can't achieve them. There are some days where he's in those moods all day, and I'm glad when it's his bedtime. Through it all though, come bed time he usually goes straight to sleep. I'm glad of that!! Other times he's not too bad at all, but an outburst can come for no reason, out of the blue.

 

Also, it seems sometimes he might feel like being in that mood so he sets about creating the right atmosphere, if you know what I mean. Sometimes I'm at my wits end over the whole thing. It causes a flow on effect because then his 2 older sisters start getting angry with him and it can turn into a war zone. GRRR!!!!

 

Just saying I understand. Can't offer much in the way of help, as I'm still trying to figure it out too.

 

Lyn

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Also, it seems sometimes he might feel like being in that mood so he sets about creating the right atmosphere, if you know what I mean. Sometimes I'm at my wits end over the whole thing. It causes a flow on effect because then his 2 older sisters start getting angry with him and it can turn into a war zone. GRRR!!!!

 

Just saying I understand. Can't offer much in the way of help, as I'm still trying to figure it out too.

 

Lyn

 

That's exactly what happens here too. He seeks out the negative and on some days he pushes so hard for it that I have to get to the negative for the safety of others around him. You hate going there because you know what's driving it at that particular time.

 

Is there a way to get them more motivated? I would love to find a way for him to become interested in so many other things. Although he is, he (and his sister alike) are both very bad on follow through. Sister has anxierty issues and we're not sure if they're school related or Ethan related or both. She seems to havfe an upswing in the anxiety this time of the year.

 

So, needless to say, it's a beauty of a day here sometimes....

 

Fortunately, we are now going to be seeing a psychiatrist/CBT for him and a family one for all of us. They supposedly both specialize in mood disorders and OCD and are pretty familiar with TS too. So wish us luck!

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