Having A Hard Time W/ My Son And His Diagnosis

[macocha]

his grades are sliding. refusing to do his work. going from As to Cs in short amt of time. He is very, very upset and angry over this.

anyone else? how did you get through it?

it is affecting school, home, life.

I have calls in for counseling, but I have to find one that is familiar with kids with chronic illnesses or whatever it is called.

he got diagnosed march 18th and since then has been on a downhill slide

[ravenwoodglass]

Your son is likely struggling with withdrawl and the changes that we all have to deal with. If withdrawl is behind this it should lift soon, as long as he is not sneaking gluten anywhere.

Counseling is a good idea and if you have a local support group you may want to visit together. I don't know his age but if he is old enough to joing the teen section of the board that may help him have a place to vent his frustrations. It is very hard at first and hopefully the rough spots will smooth out soon.

[buffettbride]

I truly feel for your son. I think counseling is a good idea. Do you have a local Children's Hospital who can refer you to a specialist in pediatric chronic illnesses? Is there a local kids Celiac support group in your area? If you post your location, perhaps other board members can help you get connected. Maybe knowing other kids like him will help.

I think a downhill slide in grades temporarily is to be expected. When my daughter was diagnosed at 9, it was right before summer break so we had the whole summer to avoid gluten before attacking the challenges of school. I remember her being so tired of hearing about food and gluten that it was very frustrating to her as well.

The mom in me would probably just ensure him that it's a temporary frustration and to give himself a little bit of leeway. At some point he'll rebound because his body will feel good and he'll begin performing academically again.

I know one thing that made my daughter feel great is when we decided to keep our house gluten-free. It became her safe haven and place where she could open the pantry or fridge and eat anything she wanted.

[macocha]

He is 12 and is in 7th grade. Will be 13 in July. We are in Washington State on the west side near Tacoma. about an hour south of Seattle. 2 hours north of Portland, Oregon.

we got it out of him that he was scared to eat at his last appt in relation to him being upset then. he was scared to eat even if I said it was okay. I am trying to get him into a celiac camp on Vashon Island this summer.

I don't find his behavior acceptable at all. Life sucks - he has to learn to live with it - but I need to get him to that point so that is why I am understanding of the behavior even though he needs to know it is unacceptable.

[macocha]

oh and we have Mary Bridge Children's Hosp - but their counselors are two months out, sometimes three months, so I have a call in for some names that they deal with in relation to counselors who specialize in kids with chronic illnesses.

[buffettbride]

Is there any way you can take him to the grocery store with you and let him pick out the foods he wants that are safe foods? Perhaps if he is involved in the process, he'd be more apt to eat. I've seen others equate Celiac diagnosis with the grieving process---he's grieving the loss of a normal diet.

My daughter is just his age--she'll be 13 in August. I can talk to her and I'm sure she'd be happy to correspond with your son via e-mail if he wants someone to talk to. She'll think a gluten-free guy is cool! If you're interested in connecting them (in a friend way, of course!) feel free to send me a private message and I'll give you her e-mail address.

[ciavyn]

Just another thought on this: maybe see if you can arrange for him to visit with some kids who are chronically ill in the hospital, or maybe help in a local food initiative for poor families. We support a little girl in Moldova (Eastern Europe), and I had to explain to my very spoiled kids what it means to not have food. Maybe get him involved in fundraising for a more serious illness. I'm running for Leukemia and Lymphoma Society. At my last fundraiser, my son wanted to know if he could have some of the money to buy a new bat. :sigh: I had to explain what the money was for and I asked him: which is more important? Your bat, or a life-saving treatment?

Help him to see that yes, this does suck, and those emotions are absolutely appropriate...but others have it much worse. He's got the good kind of sick that can be fixed. Also, maybe teach him how to make healthy snacks and fun treats for his friends. Help him be the cool kid who has awesome food at his house.

It is scary to eat when you have this. Even the good stuff sometimes makes you sick. I had a little pitty party fit the other day, I was so frustrated, and I'm way too old to act that way! But I had it out, and moved on. But I'm an adult, and I know how to channel my frustrations and emotions. He doesn't yet. Remind him it's okay to be mad, totally acceptable to be frustrated and angry at life...but he can't act on it all the time.

He's just scared...this is for life. It's not like a cold or poison ivy. That's a lot of weight for young kid.

Good luck, and let us know how things are going.

[ravenwoodglass]

oh and we have Mary Bridge Children's Hosp - but their counselors are two months out, sometimes three months, so I have a call in for some names that they deal with in relation to counselors who specialize in kids with chronic illnesses.

I would get him into any counselor you can find. If he is fearful of eating that is normal but it may take a lot of understanding to get him past that. Please don't be too hard on him. Patience is needed as he is going through a lot. His behavior may not be acceptable to you but you have to understand that he is going through a greiving process right now and hugs and understanding are more in order than a 'buck up and deal with it' attitude.

[Darn210]

It may be helpful to get him involved in the research and preparation of his own food. He may be feeling out of control of his life and that will help him regain it. He will need to learn to advocate for himself at some point and he is plenty old enough to start now. Show him how to look up foods on the internet. Guide him in what kind of questions to ask at a restaurant. Show him how to look up gluten free foods at Wendys so that he can see that he can have a chocolate frosty. I think having a couple of go-to normal/mainstream foods when he's out and about with his friends will also help.

At this point, he's having to trust what everyone else gives him to eat. I would find that scary too.

[macocha]

buffet - I will talk to him about that.

As to understanding, I totally get it and understand that he has a life change, that he is mad that he has to watch his friends devour food he no longer can have. I get it - really I do. As I told him, I understand your anger and you have every right to it, but you also need to realize that acting the way you to is not acceptable and you need to learn to handle it and move past it. He gets the I love yous and the hugs, but he is also getting the you cannot do that...

And he shops with me we got and look at stuff. I am also going to teach him how to make a few things so he can make them on his own too. So that we have going

I just want a counselor to help him get through this hurdle because he isn't listening to me - what teen does...lol

thanks everyone

[masterjen]

First, a brief background about me: I have a degree in psychology. I'm an adult now, but have had disabilities/impairments my whole life, and I remember all too well what it was like to recognize I was "different" and couldn't do some things other kids could. So, I hope you are willing to hear my take on the situation.

What goes through my mind when I read your concerns for your son is that he is expected to continue to resume his normal life (it sounds like), where he left off, before going gluten-free. Many of us adults who were diagnosed with celiac and went Gluten-free have struggled with fatigue, weakness, headaches, irritability, etc. to the point where we have had to reduce work hours or take a break from work all together. School, for a kid, is like work for an adult, and perhaps a full school day is too much for him at this point. Kids respond to stress in different ways than adults do, often because they don't yet have the ability to rationalize why they are feeling the way they do, and therefore they do not know how to mentally take control of themselves to behave appropriately.

Try to give your son an acceptable outlet for his frustration and anger: these emotions won't go away, and until he vents them they will always be lurking. For instance, does he have an interest in learning how to box? Using a speed-bag or heavy bag is an awesome way to vent anger: sometimes the speed/heavy bag mentally "becomes" a teacher, a doctor, a peer-rival who is teasing him for not being able to have that package of chips, or it may represent a parent . . .(lol). If he likes reading, find kid-appropriate inspirational stories (true ones are better than fictional) that talk about other kids who've overcome obstacles.

The other thing that may help your son is to arrange a reduction in school hours, if this is possible (and if this is something your son would accept). Some districts even have at-home schooling for kids on temporary basis (ex. a child who has had surgery or chemo. treatments and is unable to attend class for several weeks). If shortening school hours on a permanent basis is not an option (as it wasn't in my case), consider having "spontaneous" (letting the school know, perhaps, but not your son) days when you and he will play "hookey" for part or all of a school day. It meant so much to me when, out of the blue, my mom would occasionally (about once every 2 months or if she noticed I was particularly down or "stressed") show up at lunch-time and say "c'mon, let's get out of here" and we'd go shopping, for a drive to a park or even a matinee).

Okay, now I'm reminiscing so I'd better stop here. Hope this helps!

[Reba32]

There is not one Celiac here who will agree with you that your son's behavior is "not acceptable". Not only is it acceptable, but it is totally normal behavior for anyone of any age. Telling him that his emotions are not acceptable is telling him that he's even more wrong, broken, weird, a freak, than he was with just the celiac diagnosis.

The disease is bad enough to deal with as an adult, being a kid in a gluten filled world is probably nearly impossible, and he needs understanding and encouragement. Not his own parents telling him his feelings are "wrong". I cannot imagine the overwhelming feelings he must be having right now, and on top of that he's "not allowed" to feel that way!?

There is a grieving process, and it'll take a good long while for him to accept his diagnosis. There is also a physical process that his body is going thru of withdrawl and healing, which will take even longer. Give the kid a break, feed him good healthy foods, and he'll start to feel better eventually. It's not going to be overnight, and even adults have a difficult time to "just deal with it".

[dilettantesteph]

My son was diagnosed at age 10 and is now almost 13. I got diagnosed shortly after he did as I recognized that my lifelong symptoms were from the same condition. That way we went through everything together. Some of the behavioral and school problems are directly due to the adjustment to the gluten free diet. There is the gluten withdrawal. Then there is the increased reactivity to gluten as the immune system settles down. There are the repeated glutenings which result in depression and illogical behavior. It is a huge amount to go through. I was glad that we had each other. Now, he just got a report card and had straight A's. Hang in there and it will work out. It might take awhile though. You will have to be patient. I'm really not sure that a counselor would understand. It is hard to understand how the neurological effect makes you so illogical.

[macocha]

"Telling him that his emotions are not acceptable is telling him that he's even more wrong, broken, weird, a freak, than he was with just the celiac diagnosis."

Wow Reba, that was a bit harsh. I don't think you really read my posts at all to come to that basis of your opinion. You are saying that feelings and behavior are the same? Really? Hmmm....

I never said my son's emotions or feelings were unacceptable and fortunately he knows this contrary to what you are assuming, but what I did tell him was that speaking to an adult in the way that he did was unacceptable. That his anger is understood and I realize that he is angry, but he will need to come to terms with his diagnosis and deal with it on a more appropriate level after time. If he didn't think he could talk to someone with respect then he needs to ask that person to give him a minute to answer or whatever he needs to do.

His behavior of being a jerk to someone is not acceptable at all. And like I said, I understand his feelings and emotions so that is why I am taking steps to get him to come to term with his feelings and emotions and better handle them.

I thought this was a support site?

and dile - he will be seeing someone that specializes in fields of children dealing with lifelong changes including chronic illnesses - so I imagine that they will be familiar with feelings that a child would go through and how to help him deal with his feelings and emotions so he can get a better grasp on himself.

[ravenwoodglass]

"Telling him that his emotions are not acceptable is telling him that he's even more wrong, broken, weird, a freak, than he was with just the celiac diagnosis."

Wow Reba, that was a bit harsh. I don't think you really read my posts at all to come to that basis of your opinion. You are saying that feelings and behavior are the same? Really? Hmmm....

I never said my son's emotions or feelings were unacceptable and fortunately he knows this contrary to what you are assuming, but what I did tell him was that speaking to an adult in the way that he did was unacceptable. That his anger is understood and I realize that he is angry, but he will need to come to terms with his diagnosis and deal with it on a more appropriate level after time. If he didn't think he could talk to someone with respect then he needs to ask that person to give him a minute to answer or whatever he needs to do.

His behavior of being a jerk to someone is not acceptable at all. And like I said, I understand his feelings and emotions so that is why I am taking steps to get him to come to term with his feelings and emotions and better handle them.

I thought this was a support site?

There are a lot of us who dealt with the neuro effects and/or the awful withdrawl symptoms and understand both how you feel and your son. Hopefully the worst of things will be over soon as the withdrawl is tough. You may wake up to a much brighter, happier child soon. For some it is almost like an 'overnight' thing with a sudden change over to more normal emotions. You may find that happens while you are waiting for a visit with a counselor.

You of course are right it is not fair for him to be disrespectful but he may also need to vent. He knows you love and support him but things are hard for him now. I learned to go away from people to get that anger out. I punched pillows threw rocks at the big tree in the back yard or went into my room to let out an earsplitting scream when things got to severe. Perhaps you can help him find a safe outlet for that anger rather than directing it at others. Just like we learn that we should critize the behavior rather than the child, which you seem to know already, he needs to learn how to do that with the adults in his life. You have let him know that it is okay to be angry and perhaps you can show him a safe way to vent that anger. Maybe let him know that it is okay to go into his room and yell if he needs to or to throw a pillow as long as nothing is broken. Get him a punching bag and paint and paste some pics of pizza or a wheat shaft on it and let him punch away or whatever works for him and you. Some kids need help in getting emotions out in a good way but it needs to be learned like so many other things in our life.

I hope this phase of his healing and grieving is over soon. It must be tough for you to deal with all the changes too. It's not easy for Moms to have a kid diagnosed. I know you will find the right way to help him through it.

[ciavyn]

Some of us are a little close to this topic, and it's hard sometimes to read the meaning, not just our own emotions into things. It sounds to me that you are working with your son to help him come to terms with his disease...it's just hard because he's a teenager and your mom. Let's face it -- we love our kids, but when they start throwing attitude around, even when they have a reason, we can't just let it go. However, sometimes that parenting is taken by them that they are "wrong" and that you are being "controlling." I definitely second Ravenwood -- is there anything else he enjoys, something maybe he's been wanting to try or has given up over time...that would offer him an outlet to get out some anger? I run, and at the end of a run, I find any frustration or anger I had seems to roll off me. It's not over or gone...just in perspective.

This way of eating is SO frustrating, especially in the beginning or when you get glutened, and I can't imagine going through it without the coping skills I've learned over the years (thank you, therapy!) Not to mention, it's tough on the whole family. But at the same time, he will have other lessons in life that will be frustrating, anger-inducing and painful, and he will have to learn how to control his actions and behave in those situations too. He can't just fly off and say whatever he wants. This is as good a time as any, and it sounds like he has a very understanding mom.

Hang in there. It will get better, and you do have support here. We're all still finding our way.

[tarnalberry]

As to understanding, I totally get it and understand that he has a life change, that he is mad that he has to watch his friends devour food he no longer can have. I get it - really I do. As I told him, I understand your anger and you have every right to it, but you also need to realize that acting the way you to is not acceptable and you need to learn to handle it and move past it. He gets the I love yous and the hugs, but he is also getting the you cannot do that...

The problem with telling him this is that you're telling him what he can't do, but not (at least by what you've written) giving him options for what he CAN do. "You need to learn to handle it" may just be leaving him with a big "well how the heck am I supposed to do that?" so that he's not only angry at the situation, but angry that he can't deal with the situation. The same holds true for the "learn to move past it". And that one has the added "insult to injury" aspect that moving past it isn't something that is going to occur in a few weeks for many people. Think of it as a grieving process like any other - would you expect him to not display any of this behavior if his father had just died? (And no, I'm not being sarcastic here, the loss of what has always been there and what is seen as necessary to be a normal human being is, in magnitude, not necessarily any less than the loss of a family member to many people.)

Help him "learn to handle it". Help him "move past it" (emotionally, not just in the practical day-to-day stuff you seem to have covered.) Give him tools, give him suggestions, ask him for his ideas and suggestions. Leave it all on his shoulders and he's going to feel overwhelmed from the change, singled out from the change, and then like a failure that he can't even deal with it. You don't have to wait for the counselor to start helping him figure out the HOW's, not just the WHAT's.

[macocha]

tarnal - no I have not written each word I stated to him as you imagined so I just generalized my statement. but the gist is that we talk about ways he can express himself safely and w/o being disrespectful. he knows I understand. we both also have a medical condition no one else has in our fam, so we have talked forever about things - we are very close.

my husband thinks that running, as someone above mentioned, would be good for him to do when he is angry, and he would love to run. I would probably have to get off my butt and either get a bike or run with him so he isn't going off alone. We live in a very small town and don't have a track that is close. I also talked to him about someone's idea of a punching bag and he likes that idea (of course - who wouldn't...I am sure his twin bro would relish not being his punching bag anymore....just kidding )

He also is going to talk to the school counselor tomorrow morning to help him come up with ideas on ways to relieve his anger. I am sure she is knowledgeable regarding that as it isn't just celiac that would make a kid angry. maybe come up with a plan for him or even some resources there at the school.

oh, and the nurse did tell me that my son is the only one there at that specific school that has celiac. So, I am going to try and find some teen support get together groups. If I had the talent, I would try and put it together myself....

I appreciate all the input, but I just don't like a few of the assumptions based on lack of input from my side. I just don't want to bore you with a full-blown novel. My son is fully aware that I support him 100% and realize he is having a hard time and don't think him a freak or there is something messed up about him. He is 100% aware that my disappoinment is in his behavior and his disrespect and he even agrees that it isn't right.

[ravenwoodglass]

I also talked to him about someone's idea of a punching bag and he likes that idea (of course - who wouldn't...I am sure his twin bro would relish not being his punching bag anymore....just kidding )

I had to smile at that. I was a twin and I was the 'P Bag'.

Perhaps his twin might run or bike with him. A basketball hoop might be a good thing unless they are of the anti-sport mind. My son would have never used one. One thing to that helped my DS, who also had some anger issues, was martial arts. It taught him a lot about control as well as self defense. Ping pong is also a possibility for them. Just about anything that can get him moving and thinking about something else might help.

[macocha]

ooooooooooooooh ping pong. the boys would LOVE that! my hubby loved it growing up and played it too with his twin bro and his twin sisters (scary huh? lol)! I am seriously considering the punching bag and hanging it in the garage for them. maybe we should set a ping pong table up too I think those are spendy so will have to look at sales or craigslist or something.

The boys right now are totally into sports. They both play select baseball and right now their games and tourneys are starting up.

hmmm...twin might not run with him (hates running) but he prob would bike with him.

[ravenwoodglass]

ooooooooooooooh ping pong. the boys would LOVE that! my hubby loved it growing up and played it too with his twin bro and his twin sisters (scary huh? lol)! I am seriously considering the punching bag and hanging it in the garage for them. maybe we should set a ping pong table up too I think those are spendy so will have to look at sales or craigslist or something.

The boys right now are totally into sports. They both play select baseball and right now their games and tourneys are starting up.

hmmm...twin might not run with him (hates running) but he prob would bike with him.

I was able to find a ping pong set that used our dining room table, it was a net, balls and paddles and the net just hooked on to the sides. A larger toy store may carry them or check with Ebay. If you have a large square table that might work.

It would be much cheaper than having to buy the whole table. I got ours off Ebay for less than $5.