How to cope with family that don't understand?

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Hi everyone,

once again I come to you for words of wisdom. As some of you know my 16 year old has epilepsy, diagnosed a year ago, doing fine is meds, extended remission. Now, before his epilepsy diagnosis he did well in school, no worries. After his epilepsy diagnosis and meds, he seems nto loose focus sometimes, time management is a challenge, doing homework takes forever now. His grades are fine as and bs, but that is with a lot of my intervention, keeping him from getting distracted, talking to teachers at times to get extensions, me reminding him to do things and help him with projects just to keep up.

my husband thinks that he is just lazy, unmotivated etc. and that I am "bailing him" out is not helping him. I see his point, but in the other hand, what is the alternative? He says to let him fail, but I can't do that. I try to explain that it's the epilepsy and the medication and he says that I am making excuses,that he is perfectly fine, that I am babying him etc. now he is here having a conversation with my inlaws about how "I should just stop keeping him from being distracted" and let him fail so he learns a lesson. My son is not lazy, he works harder than anyone else, nothing has come easy for him, walking, talking, making friends since he was born. He is doing great now and we can't complaint, but wth? My inlaws don't know my son is epileptic. My husband has never seen him seize and has never been to any of the appointments or tests due to work, I guess thinking is "all fine" is his way for coping but I will be damned if people can come to my house and judge me!

i am so upset. I have to hear how my mother in law talks about her precious neurotical children and how easy school was for them etc. etc. Shut the hell up!

Anyway, sorry for the rant. How do you cope with family members than don't understand. I have dedicated my entire life to help my son be a productive citizen and throught this journey. I don't want my son to have ieps or 504 plans because he doesn't need them. He is bright and smart and dedicated. I feel betrayed and slapped in the face. I want to scream at the top of my lungs that it is because he is epileptic and takes antiileptic drugs, but I have enough with a mother in law that makes a fuss over kids that have mental or behavioral disabilities, she can't handle the truth. I know that she will withdraw her affections because she is scared of everything that she doesn't know.

If you are still reading, your thoughts are appreciated. Thank you

Comments

You can't change someone else

Submitted by Anonymous on Thu, 2014-06-05 - 01:54

You can't change someone else, you can only change your reaction. I find it easier to think that people are limited (some are just at a different stage of the journey, others just seem lacking, I'm limited but I hope to keep learning). It results in less guilt/worry/stress that way. I've got enough stress already, I can't bother with things/people that make anything harder. I am polite but I do not back down from advocating for my children. But it is easier when I get positive support from others who understand, then people who don't have our back can be ignored. A person's inability to deal with reality is not your problem, unless it is your spouse.Can your spouse be more involved (somehow) in dealing with doctors/medical stuff or something that brings it home? Maybe the neurologist has some considerations that would ease school difficulties and he could spearhead dealing with the doctor and school (would neuropsych testing help? Ask the neurologist). It is hard because your son's seizures are controlled (not lacking in fallout tho'). Also hard because your son is at an age where he should be actively transitioning to being in charge of his medical needs. I make sure my husband goes to every neurology appt but those are every three months or less, harder to ignore if there is still a problem, sharing the medical load so we are in the same chapter (closest we get to being on the same page) is cheaper than marriage therapy.There are some very smart kids with IEPs. An IEP isn't a judgement that someone isn't smart, it is an understanding that education needs to be more than one size fits all when there are obstacles that other approaches can work around. My child has 504 plans that pretty much mean she is not given a hard time about missing school but right now she can miss ~20+ days and not have a problem, that just won't cut it later. They give her seating where she is close to the teacher because it helps the teacher keep an eye on her. Later on I expect there may very specific IEP needs for any memory issues, organization issues, etc. Lots of smart kids on IEPs have accomodations around organizational issues, maybe they do the work but don't turn it in but they can learn the organization skills they need for success if given tailored support or structure.

You can't change someone else, you can only change your reaction.  I find it easier to think that people are limited (some are just at a different stage of the journey, others just seem lacking, I'm limited but I hope to keep learning). It results in less guilt/worry/stress that way. I've got enough stress already, I can't bother with things/people that make anything harder. I am polite but I do not back down from advocating for my children. But it is easier when I get positive support from others who understand, then people who don't have our back can be ignored. A person's inability to deal with reality is not your problem, unless it is your spouse.Can your spouse be more involved (somehow) in dealing with doctors/medical stuff or something that brings it home? Maybe the neurologist has some considerations that would ease school difficulties and he could spearhead dealing with the doctor and school (would neuropsych testing help? Ask the neurologist). It is hard because your son's seizures are controlled (not lacking in fallout tho'). Also hard because your son is at an age where he should be actively transitioning to being in charge of his medical needs. I make sure my husband goes to every neurology appt but those are every three months or less, harder to ignore if there is still a problem, sharing the medical load so we are in the same chapter (closest we get to being on the same page) is cheaper than marriage therapy.There are some very smart kids with IEPs. An IEP isn't a judgement that someone isn't smart, it is an understanding that education needs to be more than one size fits all when there are obstacles that other approaches can work around. My child has 504 plans that pretty much mean she is not given a hard time about missing school but right now she can miss ~20+ days and not have a problem, that just won't cut it later.  They give her seating where she is close to the teacher because it helps the teacher keep an eye on her. Later on I expect there may very specific IEP needs for any memory issues, organization issues, etc. Lots of smart kids on IEPs have accomodations around organizational issues, maybe they do the work but don't turn it in but they can learn the organization skills they need for success if given tailored support or structure. 

You can't change someone else, you can only change your reaction. I find it easier to think that people are limited (some are just at a different stage of the journey, others just seem lacking, I'm limited but I hope to keep learning). It results in less guilt/worry/stress that way. I've got enough stress already, I can't bother with things/people that make anything harder. I am polite but I do not back down from advocating for my children. But it is easier when I get positive support from others who understand, then people who don't have our back can be ignored. A person's inability to deal with reality is not your problem, unless it is your spouse.Can your spouse be more involved (somehow) in dealing with doctors/medical stuff or something that brings it home? Maybe the neurologist has some considerations that would ease school difficulties and he could spearhead dealing with the doctor and school (would neuropsych testing help? Ask the neurologist). It is hard because your son's seizures are controlled (not lacking in fallout tho'). Also hard because your son is at an age where he should be actively transitioning to being in charge of his medical needs. I make sure my husband goes to every neurology appt but those are every three months or less, harder to ignore if there is still a problem, sharing the medical load so we are in the same chapter (closest we get to being on the same page) is cheaper than marriage therapy.There are some very smart kids with IEPs. An IEP isn't a judgement that someone isn't smart, it is an understanding that education needs to be more than one size fits all when there are obstacles that other approaches can work around. My child has 504 plans that pretty much mean she is not given a hard time about missing school but right now she can miss ~20+ days and not have a problem, that just won't cut it later. They give her seating where she is close to the teacher because it helps the teacher keep an eye on her. Later on I expect there may very specific IEP needs for any memory issues, organization issues, etc. Lots of smart kids on IEPs have accomodations around organizational issues, maybe they do the work but don't turn it in but they can learn the organization skills they need for success if given tailored support or structure.

I want him to be independent,

Submitted by just_joe on Thu, 2014-06-05 - 16:34

I want him to be independent, and you are right, it is getting awful close to that time in which he should take care of his medical needs, etc. which leaves me at a loss of what to do. My husbands approach is a valid one to foster Independance so he can learn to do things for himself like everyone else You are like my mother. Your husband is like Pete (step father). Why not try letting do things himself and tell him he has to do it himself since he will some day have to be independent. If he is having a problem getting thing set he needs to see both of you. That way he sees what it takes to be independent. If he approches you both your husband is included and he then can assist with your sons learning how to become independent. He might then see that your son may have issues he never thought of. Working together to accomplish this issue can help the whole family. Hey it worked for me. I learned how to cook from doing my homework on the kitchen table. I also learned how to test tubes used in TV's which helped Pete since he started his business working from home. Oh as for sreaming Shut the hell up. This is where you can get a release so yes mereloaded I will comment on your posts. Like I did today I had to think before posting. I wrote and deleted this about 5 different times. Later and I do hope you get thing working and he does get independent. I started a couple of years earlier but hey he's a smart fellow and yes he can learn as well if not better then the average person. Joe

Thank you Joe. You are right,

Submitted by Anonymous on Thu, 2014-06-05 - 18:52

Thank you Joe. You are right, men and women are different and can solve things only the way we know how, it should be a family thing, U just wish my husband would see my side just like I see his, he says that all of my worries all fueled up by the internet. Whatever! I am glad there is only 5 days left of school. I need a break.