Do your teenagers/young adults have bad memories of being diagnosed?

[cdwise]

Ds is 8 and we're about to embark on the process of getting a diagnosis. I'm wondering what the long-term reaction and self-esteem issues have been. We've never done traditional school and he's never been in a special needs class. Trying to think through the plus/minus of homeschooling or putting him into the traditional public school system. Did your kid feel "broken" after they got their diagnosis? Relieved? Thoughts on public school special needs programs vs. homeschooling and the effect on emotional well-being?

[dbmamaz]

My son was in school and in all sorts of trouble, but I think he felt relieved. It was a lot harder on me! But he is glad to have a name for his issues, and to know what to say to explain to other kids why he is different - for example on the robotics team he joined. He sometimes wishes he didnt have these extra challenges, but never had any bad feelings about being diagnosed

[dbmamaz]

My son was in school and in all sorts of trouble, but I think he felt relieved. It was a lot harder on me! But he is glad to have a name for his issues, and to know what to say to explain to other kids why he is different - for example on the robotics team he joined. He sometimes wishes he didnt have these extra challenges, but never had any bad feelings about being diagnosed

 

Reread - hope it didnt post already (this thing is so laggy its hard to tell)

 

My teen went to school through 7th grade. Without a dx he was constantly in trouble. The dx didnt help much. The iep only went so far. Most of the special ed teachers were able to handle him in a positive way, but not all. There are way too many teachers (even in my 'good' district) who really think punishment will make your child 'act normal' or sit still or stop interupting or calm down. He was SOO grateful to be out of there - even if i had to go back to work, he would stay at home and work independently rather than go back to school.

 

my younger son has no dx's but he is very hyper . . . he was also traumatized by school and does not want to go back, but he probably will have to some day - i expect him to mature enough to handle it

[Heathermomster]

Ds is 8 and we're about to embark on the process of getting a diagnosis. I'm wondering what the long-term reaction and self-esteem issues have been. We've never done traditional school and he's never been in a special needs class. Trying to think through the plus/minus of homeschooling or putting him into the traditional public school system. Did your kid feel "broken" after they got their diagnosis? Relieved? Thoughts on public school special needs programs vs. homeschooling and the effect on emotional well-being?

 

 

The process of testing wasn't hurtful. DH and I discussed testing and all matters attending, quietly. DS is smart and knew he struggled with reading. The testing results were a blessing to my family.

 

Did he feel broken? The answer to that problem will depend upon your worldview. i don't believe my son feels broken. Sometimes, he gets upset about being forgetful though and dislikes tutoring because it takes away from his free time.

 

In my view, homeschooling is superior. You can use excellent resources and curriculum to tailor teaching to your child's needs. While DS was in private school, his only difficulty was having teachers who were obtuse about the most basic of accommodations. PS teachers shouldn't struggle that way due to Wright's Law.

 

I observed that not all parents were prepared or willing to seek helps for their children at the school, which made the issues more pronounced with my son's classmates. Some kids were picked on. I made every effort to quietly stop that behavior whenever I heard of it. I've sent several e-mails and made phone calls. The school was very motivated to stop bullying. Any struggles with school were felt more so by DH and me. Ultimately, I pulled DS from school and things have gone well. A classroom simply cannot provide the one on one teaching that these kids require. Even in a resource room, some teachers lack the skills and training necessary to properly address issues like dyscalculia.

[NittanyJen]

My son was very young when diagnosed with his extra chromosome (47, XXY) and we explained it to him immediately. He was SO relieved. Even at that young age, he knew he struggled to do things that the "regular kids" (his words) did easily, without even trying. He was, and is, very intelligent and hard-working; a people-pleasing kind of personality, but he had specific roadblocks that held him back from getting many things easily.

 

When we explained that this extra chromosome meant that he COULD do all of the things that he wanted to do, but that it meant he would just have to work harder than some other kids to do them, he was so very, very, very relieved. He was so glad that it was:

 

a) Not his fault

B) confirmation that he was not sick or broken

c) something that he could overcome with the right attitude and determination.

 

There will always be some things that are tougher to come by for him despite his high IQ. However, thanks to his work ethic, "Mommy, I guess I'll just have to work harder than everyone else so I can do all the stuff I want to do." there won't be anything he can't do, and he knows this to be true. For him, and us, his diagnosis was a relief. It provided us with needed information, and a path forward, and allowed us to avoid subjecting him to unnecessary and unhelpful interventions (all too many boys with XXY are misdiagnosed as autistic or even schizophrenic, which is horrific, as they are entirely capable of living completely normal lives when treated right. I have met some of the men who have lived some of these stories; they absolutely wish they had been properly diagnosed as children).

 

The ones I don't get are the parents who withhold the diagnosis from their child, and allow the child to continue to wonder why he is different, wonder if it is his fault, if he has done something wrong, if he is sick, wonder any number of fears he is unable or unwilling to articulate to his parents for fear of disappointing them or sounding silly, when his fears could so easily be put to rest! We were told many many professionals to not tell our son his diagnoses for fear that he "might tell the wrong people" and get embarrassed. So what if he does-- the biggest problem with his diagnosis is that nobody knows about it, even though it is the most common genetic rearrangement people are born with (more common than Down's). If he tells somebody, we'll simply educate them, and his world will be a larger, better place :).

 

Our son's dx has a medical component as well, and getting the diagnosis and sharing it with him has allowed him to participate, from a very young age, in some of his own medical decisions. We have final say still, at this age, because he is too young to know what is best, but I find he asks excellent, thoughtful questions ("what's the <medical, not financial> cost of this treatment? What will it do to me besides the good part?" "Is this part of my Xtra X, or is this just a little boy issue?")

 

For us, there has been no down-side to getting a proper diagnosis. Knowledge is power, and our son has absolutely been empowered by knowing his diagnosis. He has used it to decide to work harder, to be at ease with who he is when other kids can run faster, and to like himself exactly as he is instead of wishing he was more like other kids.

[cdwise]

Thank you so much for your insight. I appreciate the comments and suggestions very much, and yes, I think one-on-one teaching might be what he continues to need.

[Barbara H]

While some health evaluations may involve unpleasant testing (blood tests or MRIs or whatever) most educational psych type testing kids tend not to mind. Most testers are pretty good with kids and keep the testing like playing games or solving puzzles. I would present it to your son not that you are trying to figure out what is wrong with him - but rather you are figuring out how he learns best. We adults have a lot of baggage about that idea, but most kids at eight really don't. If you can learn stuff that helps school (at home or in school) be more appropriate for his needs that's all positive.

 

I would keep in mind that what you decide to do with the testing information is up to you. I would encourage you to have someone along (a friend or mom or someone who can take your son out to the waiting room) so you don't have to discuss any negative or complex informaiton in from of him. This is a good idea from the first appointment if possible because some doctors seem to have no clue that some kinds of conversations shouldn't happen in front of kids. It is your right to take time to think about any information you receive in the evaluation and decide if and how you want to share that with your son. Depending on the type of diagnosis or based on his abilities it may make more or less sense to talk about it right away.

 

Best of luck with the evaluation.

[Χά�ων]

My DS is 8 but has been truamatized by ignorant doctors and therapists not the actual diagnosis. I make it a point to carefully screen every therapist and doctor my son comes in contact with as best as possible. If it is not possible I explain to DS that I do not know the person and if they are not nice we will leave right then. Following through has been hard on me because they are viewed as "experts" while I am just a parent.