Quick Hello And Something Great

[MightyMouse]

Hello everyone; my life has been chaotic and exhausting. I've gotten a few rather serious human bites from one of my students, who at 10, has jaws of steel. Trying to coach my teachers and teaching assistants through working safely with this child has been physically and mentally exhausting for all of us--and the student too! Anyway, it's wreaking havoc on my autonomic system. After a bite yesterday that required me to see a worker's comp doc b/c there was broken skin, I had spiked a fever over 100 f, probably just my body freaking out post adrenaline rush from all the physical activity and trying to protect myself, the student, other staff and the other kids. Today was just a potsy, potsy day...

But, onto my little miracle for the day:

I have officially found a new internist. When she asked about my general health, I said "It's okay considering I've got a lot going on", and then she said "Yeeeesssss...?" and I said "I have Ehlers-Danlos type III, a collagen defect..." --as I geared up to go into my familiar monologue, she said "yes, I'm familiar with EDS III; what are your most troubling symptoms? SVT? Joint Pain?" I almost fell out of my chair!!!! I told her my autonomic functions caused me the most bothersome daily issues, mostly svt and bp dysregulation, and then after that, the joint pain and gut issues were next on the list.

After going over my history, my dx's, my current rx's and tx's as well as my allergies, she said "well, I know you are wondering if I'm willing to work with you as your doctor... I'm game if you are." Wooo Hoooo! She was so awesome and nice, and I'm just sooOOOOooo happy. Then as an extra little happiness, as I was leaving I found out that she IS in my healthcare network (her scheduler had told me she didn't take my insurance, so I was prepared to write a rather large check today)--so it was just my 5$ copay!!!!

Thank you, universe, for giving me something good just when I REALLY needed it. Now if I could only get the lousy secretary at my old GP's office to send my records! It's time to get myself together and file a complaint --I requested my records in writing more than a month ago.

I leave tomorrow afternoon for a wedding. Michelle and Melissa, thank for your patience with me the past few weeks--I really appreciate you both, and just want to say so publicly. Nina

[Jacquie802]

Nina,

I am SOOO HAPPY that you found a great internist!!!!! It really is hard these days to find a good PCP, etc. but esp one who understands POTS,EDS, etc.

As for the bite, what type of disapline (sp??) do the kids get when they do something like that? Is the wound looking a little bit better????

Glad to see a post updating us on how your doing.

[MightyMouse]

I work with special needs kids, most of whom wouldn't understand the standard school discipline. I am actually board certified in behavior analysis, so you might think of me as the master of discipline at school anyway. The student who bit me has no malice or meaness--the bites are result of the previous placement history where aggression resulted in the parents being called to the school, the student going home for the rest of the day to watch tv and play.

If you couldn't talk, and you didn't understand all of what others were saying, and suddenly hurting other people didn't get you sent home, you might try harder too. I always use the analogy of our history with something familiar--like a soda machine. If you are accustomed to putting your money in and getting a snack in return, then you have established a "reinforcement history". When that routine or history is broken either by accident or on purpose, it can cause people to do things that they might not normally do. So if you put your money in, but the snack doesn't come out, you might poke the machine, shake it, kick it, yell at it, stick your hands inside it--all things you wouldn't normally do while standing at a vending machine.

This child has a reinforcement history as follows: I become aggressive and I get to go home and play (yay!).

The child who bit me is currently very confused about why a trip home isn't coming after the aggressions... as you all could guess, it's probably a bad idea to teach someone that aggression is the best way to get what you want! The former school didn't teach this history on purpose, nor did they ever say "hit me or bite me and you get to go home." --they were just doing what they thought was "right" at the time to keep everyone safe.

Sadly though, human beings figure these things out even without words. The tough part is how SMART this kid is despite having autism--I can see the potential for learning to ask for breaks appropriately, for learning to communicate nicely and also learning loads of skills. I just 4 weeks with us, this student is already speaking more in full sentences, is spending more time in school in one day than previously spent in an entire week. Even the aggressive episodes are reducing, but SURVIVING those episodes has been a challenge.

It's hard to get to the point where I have to say "I can't help anymore, it's not safe for the child or staff"--but we're nearly there with this kids. Leaving us usually that means the child goes to an inpatient setting to live and go to school--we're the last stop in public education.

Sorry for talking so much about behavioral stuff--the teacher in me is showing Anyway, all things considered it was still a good day today. Hopefully, tomorrow will be a BETTER day for all (not just for me or my student).

Nina

[Sophia3]

Nina

Sorry about the bite. OUCH.

Glad you found a nice new doctor who is in tune to your issues. That is always a praise!

[DancingLight]

I don't think 'healthy folks' 'get' how incredibly blessed we feel when we find a doctor willing to work with us!!!! Good news!!!!

Anyways, as for the bites, ouch.

And for the behavioral analysis, maybe you could stop by and help us out with Asher?????

Thanks for updating us...and checking in....

Em

[MightyMouse]

Em, perhaps my sister Becky could help you with Asher? She owns her own kennel and teachers obedience courses to doggy parents. Funny that the two of us both ended up in fields where we seek order in chaos (our upbringings were complicated and ...well... dysfunctional doesn't do it justice... it was confusion, plus emotion, plus disruption, complete lack of consistency and lack of anything one could rely on...).

Seriously, there are doggy trainers who will come to your home if you need them to. I know my sister does that, but she's in CT, a bit far away from Asher to be of use.

Yes, I feel so blesssed to have found a doc that it just clicked with from the minute she stepped in the room. Awesome! Nina

[Lukkychrm42]

Wow, that's so great for you, Nina!! Hurray!!!

I hope things go well with the student- that must be tough on all of you.

Yay for nice doctors!!!

[bttrflyamby1981]

Congrats Nina,

I'm glad your having better luck!!! It's just amazing what gets tossed our way when we are down, I'm glad things are looking up for you! Here's to more positive days!!

Amber

[goldicedance]

I sure hope the good news outweighs the bad biting news.

As for dog training, we have been watching The Dog Whisperer on National Geographic.

Nina, Cesar the Whisperer rehabilitates dogs and trains people. He says that dogs frequently get rewarded when they are anxious by the owner saying something to the effect of you poor doggie, it's ok. The dog loves the sweet talk and continues his untoward behavior.

I recommend The Dog Whisperer. We have trieds some of his tips on our little Westie. We are now her pack leader and she is just a member of our pack.

Lois

[MomtoGiuliana]

So sorry about the biting child.

That is wonderful news that you found a new doctor who is so knowledgable!!

Katherine

[calypso]

That's great news that you found a doctor with good knowledge of EDS, and who's willing to work with you. I hear a lot of similar stories about children with challenging behavioral issues from my mother-in-law, who works with that population. She always has a new bruise or skin injury. You must have a great deal of patience. Just know that this work is so valuable, needed and appreciated, whether you hear that or not. that often is what helps my mother-in-law make it through the day.

Amy

[MightyMouse]

Amy, here's the funniest thing... I'm probably one of the most IMPATIENT people on EARTH. However, I can revel in small steps toward the finish line--I'm happy as long as change is headed in the right direction and I am a beast when things are going badly; I'll work like mad to try and make things work for the child and for us.

Yes, the happy doctor news WAY outweighs the bites. The biting child actually did better today, no actual bites, just a few superficial scratches. She went home on a great note--with me telling her how wonderfully she kept her hands and teeth to herself today; lets home Monday it keeps improving. Meanwhile, I'm still SOOoOooooOOOoooo happy about my new doctor. I litterally feel like it's a miracle for me right when I needed it. big happy sigh and smile

BTW, I'm obviously not in midair flying to a wedding right now. I'm home b/c all the flights to Cleveland from Philly were cancelled tonight--so I have to try again tomorrow am and hopefully my beautiful dress, still in my checked luggage, will get there with me. Just in case, I'm packing a carry on for tomorrow with a back up outfit--but not nearly as nice.

Nina

[Maxine]

Nina,

I don't know how you do it?-----------------------------With everything you have wrong physically, and still working---are you still in school? Human bites can be a big deal for someone without POTS----hope everything turns out OK.

I'm glad you have a good internist---sounds like she knows what she's doing-----great to hear the positive news.

Maxine

[Guest Mary from OH]

Nina,

You never cease to amaze me!! I'm SO happy to hear about your dr!!! I actually have an appt with Dr. Grubb in Feb that I'm looking forward to...

I miss working in Psych... I'll just have to live off of your tales!! Hope your little one keeps improving!! ABA all the way!!

Take care and I hope you got to the wedding!! My daughter and I were in Cleveland this weekend too!! We went for my Uncle's (my Godfather) 50th wedding Anniversary!