Monday, April 25, 2011

Please excuse the rant!

I'm sorry - I try not to bog the blog down with a lot of real life stuff but I'm angry. I have 3 young adult children with health issues. The oldest and youngest have postural orthostatic tachycardia syndrome. The disorder affects every system in your body that is supposed to function without your input - breathing, heart rate, pupil dilation, blood flow, vision, etc. So it qualifies as a disability. There are medications to treat the symptoms but it often takes an extremely long time to get the balance correct. My oldest has been fighting her way through college and will finish successfully at a different school than she started with (because of the unwillingness of the dept head to work with the disability) in 6 years rather than 4. My youngest is in high school and was diagnosed his freshman year. All of high school has been a major struggle - this is his 4th year and I think we've finally got the medications right. He's going to need another year to finish. Today the principal banned him from the school. He's working to complete two courses from home but still needs access to the teachers and he has some standardized tests he's supposed to take in May and June. Excuse me, but isn't the goal supposed to be to help the kids get through?

I don't want to have to get the advocates involved again so I'm currently waiting for responses to my plea for an alternate plan. All prayers appreciated!

9 comments:

dale's dreams said...

Oh, De, I am so sorry. Big hugs to you dear. I know what a struggle this has been and will continue to be for you and your family. Hang in there, Dear! Don't give up! :)

Marlene said...

My thoughts are with you, I hate when you have to fight your way through the system

Kathi said...

Oh dear De, that is such awful news. In his senior year too! Why did they ban him from school? Seems outrageous to me! Surely his symptoms don't have that much effect on his performance at school???
I will keep you all in my prayers.
Hopefully, he will be able to complete the requirements and graduate as planned!

Kim said...

I'll be praying De! I wish that this day and age had more compassion for people with disabilities. Just because I can't "see" your health issue does not mean it is not a valid health issue. Just because I don't "feel" your pain doesn't mean you don't feel it. I hope that the school can work with you with your son and I think sometimes a person just has to have a little rant on their blog- we all have issues once in awhile we need a friendly word or reassurance over. Hugs to you today!!!!!!!!!!!

anna said...

people who haven't felt such problems under their own skin can be so hard-hearted..I sincerly pray and hope that there will be positive outcomings for you! Many Greetings, anne

Lataina said...

That's just awful! I hope it all gets resolved very soon for you, De.

De said...

Thanks everyone! Your kind words mean so much.

Katie said...

Oh De! As you know, I have this 'illness/disability', too. I missed 3 weeks one year, because I was so sick, and they tried to fail me, too... But we were armed with Doctor notes, and they let me slide. It's terrible that he has to go through this, You would think since this is his last year, they could figure something out! This invisible illness though sure does make you stronger- because of the fight you have to put up just so people realize you've got a problem! One day I'm gonna make a t-shirt! Then people might get it?! Maybe?!

Don't ever feel bad about venting! That's what us blogger friends are for:) I hope they can figure it out for him! He's got enough to deal with!
HUgs!
Katie

De said...

Katie, he's missed so much school that he doesn't have enough credits to graduate this year. I think it's the combo of the POTS and ADD which didn't get diagnosed until this year because I decided to take him to a neurologist. The school never caught it. So he has to go another year (his choice) or get a GED (my choice.) He wants to go to college - so the extra year of high school would be good if he's healthy and successful. Just very frustrating and somehow worse this time through than it was with my oldest.