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A light bulb moment!!!!!!

DarkStar's picture

Posting issues, putting comments down below here there and everywhere

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DarkStar's picture

I'll tell you what, steppers....if your kid or skid has mental health issues, the parent darn well better do their research and research and research some more, because MANY mental health specialists can't see outside of their own specialty to get to the core of what the kid has or needs to succeed!

SO has struggled for years and years with SSnow10. When BM had full custody she put the poor kid on ADHD meds when he was only FIVE YEARS OLD, despite protests from SO. And once you head down that medication path, it's really hard to get off of it.
SS10 has been on every ADD/ADHD med out there, as well as some "off brand" meds that aren't specifically for ADD/ADHD/Austism, but "seem to help" with "some" kids.

SS10 was first diagnosed with ADHD, then as being on the autistic spectrum, but things never quite fell into place. Things would get a little better for a while, then backslide. Try something else, get better, backslide. Lather.Rinse.Repeat.

SO spend hours upon hours upon HOURS doing research for SS10. He came across PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). SS10 got tested and he was just SWIMMING with strep bacteria. He was put on antibiotics for a year. It helped with the tics, but the behavioral and learning issues were still there. Info on PANDAS for those interested: http://www.nimh.nih.gov/health/publications/pandas/index.shtml

This year, after taking SS10 for his med check, and the doctor wanting to up his meds AGAIN....SO said he wanted to try something different and showed the doctor his research.
http://www.autism.org.uk/about-autism/related-conditions/pda-pathologica...

Now, I am just as tired as everyone else about everything under the sun being labeled as a "disorder", but maybe it's better to think about it as qualifying and labeling certain behaviors rather than diagnosing someone with a disorder? Anyhoo....this is REALLY on the mark for SS10. SO was so frustrated because there was so much about SS10 that didn't fit on the autism spectrum.....SS10 is very social, no problems with eye contact, but he is a compulsive LIAR which goes against much of which is discussed about autistic kids having no filter and telling the blatent truth about everything.
This PDA syndrome really hits the mark. The anxiety and panic at being asked to do the simplest of things. The obsessive behavior with people (wouldn't let me out of his sight last weekend!) The way he gets so deep into role playing and pretending that it's hard to get him back to planet Earth. He's also starting to see how he can fake his behavior to get through school. There's that BLANKNESS about him, that nagging feeling that he is just.not.getting.it. SO would get frustrated and punish SS for not listening, but then tell me, "I feel like there's something missing, that he's not deliberately disobeying and being naughty, but he JUST.DOESN'T.UNDERSTAND"
If SS10 can get the one-on-one attention in school that he needs so DESPERATELY, I think he has a chance of being a successful adult. SO is trying to get it written into his IEP. SS10 can be so sweet and fun to be around....until he's not.

So, obviously, it's not something that can be cured, but maybe getting closer to providing better help for SS10. He is switching one of his meds out completely. The drugs help during the day, but he's so keyed up that his sleep is disrupted. He was put on clonidine to help with sleep, but it was making him a zombie and very difficult to get up in the morning so that is being decreased and supplemented with melatonin.

SO really wants to be able to wean SS off of meds, but his learning and behavior just isn't improving. Hope this is the first step to more success!
And oh yeah......I love that SO has put so much time, money, and energy into finding the best way to help SS. For all of the crap I give SO....he really is a good dad.

Sports Fan's picture

I found out the same thing with my son. We starting seeing things that we thought were abnormal when he was two. I actively pursued getting him evaluated. Three evaluations and doctors later, I was able to get him on a plan that has helped him greatly. I had to fight with the schools to get the proper services made part of his IEP. He eventually was released from the Special Education track and is now on the same educational track as all the other students. If you can address it early on, a lot of conditions can be managed. The children can learn skills to deal with their condition. You have to do all the research/leg work yourself and make sure you are on the right track. Schools want everything medicated and a lot of doctors are the same. Sometimes medication is needed but a lot of times it's not and who knows what long term effects the wrong medicine can have. It is definitely an area where you have to take on the responsibility of looking into it yourself and not relying on the first thing you are told.

I am glad you are seeing progress with your stepson. It is great to hear his dad is doing all this to help him.

DarkStar's picture

SS was doing GREAT last year in school with his behavioral IEP. Then, because the school saw progress, they dropped him from the IEP. :?

OK, so if someone that has diabetes improves their health when they get on meds and a nutrition plan, that means they are CURED and should stop taking their meds and watching what they eat. Of course not! So why why why would you think that this kid is just all of a sudden magically "cured" after 6 months of a behavioral IEP????

Our public school system makes me SMDH

Sports Fan's picture

The schools just don't want to spend the money and every child in special education costs way more. At one point, I actually had to file a case with our state education department against my son's school. I won and they were very cooperative after that. You just have to keep fighting. Sadly, they only respond to the parents who make themselves heard. If you become enough of a PITA, they will help you to shut you up. Not the normal way to do things, but I learned it is the only way with the schools. One of the other parents helped me. Our state has an independent parent representative at all special ed meetings. A parent with experience to help the new parent. I spoke with mine outside of the meetings and he helped me to understand the process and how to get results.

Children with these conditions aren't "cured". They learn ways to deal and function normally. My son is 16 and I still notice small things at times but most people think he is a normal kid. He is working as a student teacher as a high school internship and he has two special education children in his class. He tells me stories how he notices things that he used to do. He helps the aide with the two children. There is a lot of hope for children if they get the help they need.