PTSD

[smartyjones]

ds has had trouble at school -- i believe it's the pandas trap of remission -- 90-95% of the time, he appears to be a 'normal' kid. but that 5-10% is troublesome. for ds, it's strong anxiety. he does have some asperger-like symtpomswith social communication that add to it, and other possible issues with writing. the school is totally seeing him as a regular kid chosing to be troublesome.

 

it's all at a terrible, terrible crisis. he's okay -- b/c he's home with me -- but there is much to work out with an adversarial school. i am fortunate in that we have a savvy advocate and i may have found a testing psych who may provide help.

 

i am in a terrible state. i feel so bad that i even had him in school in the first place. i know better. i know no one understands this. it has taken us 3 years and 3 psychs to find our current who is the only one who has been helpful. it's apparent to me now that they never reallly understood what i was telling them.

 

i've talked to ds's psych who has been helpful but i am in such regret of how things went down and that i should have known better.

 

any words of wisdom? thanks.

[dcmom]

Oh smarty-

 

unfortunately no words of wisdom here. (I am a bit of a mess myself- just from almost three years of dealing with pandas on and off, left little for me, and now I am paying the price).

 

We all know how hard you have been working and fighting for your kids. None of this is your fault- of course you are going to make mistakes- but the real issue here is how the whole health/ child care system lets us down. Doctors. Psychs. Teachers. Principals. You know you have done everything, and will continue to do everything you can- you are the BEST mom for your son- you KNOW that. Let go of regrets and move on

 

Is your son at home now and out of school? Have you moved? You are not wrong to have had him in school. Our kids should be in school- they NEED to be able to function in our society properly. I hope your new psych has this as the ultimate goal and will help you advocate in the school. I truly think the goal is, and that our kids are capable of, being in school with no accomodations. I really do. But- that is with a lot of tough work in therapy, and with proper medical care- and it comes with time.

 

We had such a great experience at USF for their intense outpatient ocd therapy. I think the program there could be really valuable for your son. (It is budget friendly). I can't help but wonder if some of the issues come from underlying ocd. Especially since he is doing so well generally. When my daughter was recovering from an episode- she was also like 90% plus- however she had one or two ocd issues that prevented us from getting her to school. It was baffling. I guess it was residual ocd that was strongly entrenched- USF took care of it. She is in school every day now! We have some writing issues with my younger- spelling and handwriting mostly. Thankfully she loves to write- but has only had kind, supportive teachers so far- we are looking into getting her some support at school. There is no "official" writing support program at her school, however, I know there are many accomodations that can be given for writing. Also, you could start with LOTS of writing accomodations (to the point where no in class writing would be required, I would think) that can be SLOWLY phased out as he makes progress.

 

Sigh. My kids are doing fantastic now (fingers crossed)- but, I will say they both have some lingering issues that we would NOT have had if pandas never hit our family. I think there are a few learned responses, which they used in really tough ocd times, that pop up when they are stressed- and I also think there are some neuro issues (spelling) which were not an issue prior to pandas. BUT, I try to think of it as a balance (hey- you know how many kids have either asthma, diabetes, serious allergies, or adhd?). Yeah they have pandas and it really sucks- but also, they have learned so much about strength, compassion, and maturity (uh- not to mention medical practices and science) that they are WAY beyond their peers in some areas.

 

Your son will be fine, he will be better than fine- he will have amazing gifts and challenges- and he will have you- and, in the end a lot of the stuff that you and I stress on until our hair is all gray, will be forgotten.

 

Ok- I HAVE to go mop the floor and get off of this forum.

 

PM me if you want to talk more! Do you have my personal email?

 

eileen

[MomWithOCDSon]

Hey Smarty --

 

So, like 99% of the population, your crystal ball was on the fritz when you tried to return DS to school?

 

Eileen is dead on, as usual. I know it's easier said than done, but you do need to let go of the regrets about the past and move on with the best efforts you have available toward the future. Kicking yourself and being a Monday morning quarterback, unfortunately, is a waste of time and valuable resources. So few of us saw this PANDAS monster coming, and so few of us had any idea what kind of havoc it could wreak on an ongoing basis. You've ALWAYS done the best you knew, the best you could, so there's nothing to be regretful for!

 

Your kids . . . your whole family . . . are SO fortunate to have you in their lives! Relentless, resilient, dedicated, focused, compassionate, curious, loving . . . what's to regret?

 

Sorry the school is being a PITA at this juncture; sometimes I think bureacracies specialize in that. It's so much cheaper to grind everything to a halt by saying "No," than to invest the time and energy into seeking out the best solution for a kid who doesn't fit into one of their established boxes. But don't let them get you down, either; you can and will prevail.

 

It's just that none of it happens as smoothly or as quickly as it should.

 

You're there for your DS, and he knows it. He knows he can rely upon you to do your best to help him, and I suspect he's smart enough at this point, too, to realize that sometimes "doing your best" doesn't equate to "perfect." But all of these trials and tribulations are building a resilient, compassionate young man who'll ultimately rise above the fray and be a better person for it.

 

So, hang in there! Maybe write down your "I shoulda's" on little scraps of paper, toss them into the fireplace, and watch them burn to ashes, never to return! Sometimes something symbolic (preferably with a nice glass of wine in hand) can do wonders for feeling as though you're starting anew!

 

Lots of hugs!