2 PANS kids fighting lyme and coinfections, our journey to healing

Progress report March 22nd 2011

Just where are we at today? Theraplay has started, we had our evaluation a couple of weeks ago but our first real session took place this week and went like this: We entered the office and there was a box of props and a video camera. Our therapist told me to follow the index cards and she would wait in the lobby for us. My son and I proceeded to work through the dozen or so index cards with things such as, “adult and child play a game that is familiar to them, adult and child try hats on each other,  play a game with the rubber ducks, share some information the child has not heard before etc. etc.” We managed to complete most of the cards (out of sequence), but we did finish without too major a situation. On Thursday I will get to meet the therapist solo to discuss her thoughts on what transpired during our play session. This approach to therapy actually involves me and my son, not a stranger helping him work through his issues. He is learning to trust me and have confidence that he can rely on me rather than a therapist. For this alone I think Theraplay will be a success for us. NeuroReorg Therapy: We were supposed to start this several weeks ago, and we did great for about a week and a half, then it became more and more a battle of will’s between my son and I. Eventually I decided the torment was counterproductive and I have decided to put this therapy on the back burner for a while. Honestly his behavior has improved so rapidly with the Beyond Logic/Consequences parenting technique that I am beginning to question whether any other therapy is necessary. I think in terms of Theraplay I will continue, as that will help not only strengthen our connection but also help us to work through the issues he genuinely does have related to his birth story. I will continue his Play therapist appointments until my parents arrive. Currently my son has a positive male role model in his Father, but his play therapist is also a good man who my son enjoys spending time with. The play therapist seems to have forged a connection with our son that right now he gets a lot of comfort from, and he has a very positive impact on his behavior. He has taught him many coping and anger management strategies, especially while he is the chaos of school. This is a valuable person to...

1 in 110 children now are being diagnosed with autism!

I only posted this today as yesterday I was reading that 1 in 110 children now are being diagnosed with autism! 1/110!!! When our son was diagnosed there was 1/150 – which I thought at the time was terrible enough. Now the numbers are staggering and continuing to climb yearly. I think almost all of us now know a family touched by a spectrum disorder. So I also ask the question “what’s going on here?”. I am not actually anti-vaccine, although I believe that the people who choose not to vaccinate do so after reading thousands of hours of information. I do think its a valid topic to include on this site, simply as people are still so confused in the vaccine debate. The whole Andrew Wakefield thing has been misquoted and misconstrued for so long now, no one really remembers the original results of his paper. Which I truly believe we all should at least read so we know the argument for and against his work. As it is not as simple as the mainstream media would have us believe. I don’t believe anyone takes it lightly to not vaccinate their child. Personally, both my children were vaccinated on a slower scale, much like Dr. Sears and Dr. Oz chose for their children. My daughter shows no adverse effects (yet) from any of her vaccinations and we stopped all vaccinations at age 3 (although for us it was actually age 5 as we were on a very slow schedule). They each had the separated measles, mumps and rubella vaccinations over the course of 6 months. I don’t regret vaccinating them nor do I know what decision I would make if I had to do it over again. My decisions have been made so luckily for me I don’t have to have that internal angst over whether to do it or not. I do remember that when our son had his chickenpox vaccination he was totally silent for an entire week. I remember panicking and worrying daily if this was a permanent thing, luckily he slowly started trying to make the animal sounds he had been making, again. I did continue to give him his vaccinations until he entered Elementary school when I discovered that not only should I be concerned with side-effects and allergies (wasn’t that enough?!!!!) I found some other information that made me totally reevaluate from a different perspective my choice to not vaccinate. This again, was a personal decision that was right for our family,...

Charter school, public school or private?

That is the question, luckily around here there is an option for either of the 3, and each has their own merits. I am beginning to think that the local public school is not for us, even though we live just 5 doors away and the teacher and support staff seem excellent. I believe both my kids find their school stressful. Every single day for the past month my daughter has feigned a stomach ache to try to avoid school, each day she promises “no really I am not lying this time, I really do have a tummy ache” and I think I need to listen more closely to what she is saying.  Of course I don’t really think she has a tummy ache, or any other ailment, I think her classroom is overwhelming, the lunchroom noisy and the realization that she isn’t top of the class anymore is weighing heavily on her 6-year-old shoulders. This is not how her kindergarten experience should be. The 1st grade class is a little less overwhelming, the children are slightly better able to regulate their behaviors. However the cafeteria still sets my son up for dis-regulation and his afternoon ‘special arts’ classes tend to not know how to handle him. He says they are mean, last I checked they just hadn’t checked his IEP for strategies for helping him have a successful afternoon in school. I heard a great phrase the other day “meet the children where they are at, and worry about where they will be later” I thought that was a great philosophy and one we should use for every kid. If my child can only write 3 short lines in 1st grade lets set a goal of 4, let’s not add extra pressure for him to write 4, but just set that goal. Then, lets have some positive strategies in place to see how we can get there. Just telling us, “3 short lines is unacceptable, 2nd grade requires much more effort, and he needs to get ready for the extra work. ” Then there is the social skills we need to work on. Last semester his report card graded him as “sometimes meeting 1st grade standards,”  to this report card stating he rarely meets 1st grade standards. No explanation of what we are going to do to work on that, no explanation as to why it might be happening, no reasoning behind what we can do from here. I now realize I am the one who needs to make sure we have some positive behavior...

Today has been a great day…

The day started great and ended fantastic. Today was what we might consider a ‘typical’ families day, or at least what we imagine might be ‘typical’. All those windows we keep peering in that never looked like ours, now, at least for today, you could look in our window and see what looks very much like a ‘typical’ family going about their business. Today my husband took our son and daughter to church and Sunday school. Typically a difficult if not impossible task for our son, and one that is often left undone. Today he went, dressed and ontime to Sunday school. Apparently he did take the time, as he does, at the end to let the teacher know that the lesson was ‘borrrring’ and he didn’t think he would come back, but-none the-less he headed into church and sat (while playing Lego) through the service. A quick break to come home, then off to the movies to watch Rango. Apparently that went well too as he sat through the movie and had a great time. Back home for an hour or two of decompression and a shower and then an unusual night guaranteed to throw him off (normally) as we had to go back out at supper time to visit his Uncle who just got into town. Again, no stress, no fights, no distress, just a boy, his new puppy and his ever present DS. There are so many parts of this day that typically would run riot, too many transitions, too much stuff he dislikes with a passion, too much stimulation, too many loud noises – particularly the band at church, just too many distractions, too many chances for dysregulation in every single part of the day.  However, it seems that none of the ‘usual’ stuff was a problem today. In the end we came home, kids went to bed no problem, and my husband chose to lay with B for a while and he fell asleep, all done by 9PM. I think I see a light, a faint dim light, but a light… Share this:Click to email this to a friend (Opens in new window)Click to print (Opens in new window)Click to share on Twitter (Opens in new window)Click to share on LinkedIn (Opens in new window)Click to share on Reddit (Opens in new window)Click to share on Pinterest (Opens in new window)Click to share on Facebook (Opens in new window)Click to share on Google+ (Opens in new window)Click to share on Tumblr (Opens in new...

The mind is a powerful tool

I was reading this article today from the Huffington post, and it further serves to remind us of how powerful our minds are, especially to suggestion. Heidi Halvorson, Ph.D. writes to the power of girls underachieving, regardless of how bright they are, due to the messages they receive from the adults in their lives. “… Chances are good that if you are a successful professional today, you were a pretty bright fifth grade girl. My graduate advisor, psychologist Carol Dweck (author of “Mindset”) conducted a series of studies in the 1980s, looking at how Bright Girls and boys in the fifth grade handled new, difficult and confusing material. She found that Bright Girls, when given something to learn that was particularly foreign or complex, were quick to give up; the higher the girls’ IQ, the more likely they were to throw in the towel. In fact, the straight-A girls showed the most helpless responses. Bright boys, on the other hand, saw the difficult material as a challenge, and found it energizing. They were more likely to redouble their efforts rather than give up. Why does this happen? What makes smart girls more vulnerable and less confident when they should be the most confident kids in the room? At the 5th grade level, girls routinely outperform boys in every subject, including math and science. So there were no differences between these boys and girls in ability, nor in past history of success. The only difference was how bright boys and girls interpreted difficulty — what it meant to them when material seemed hard to learn. Bright Girls were much quicker to doubt their ability, to lose confidence and to become less effective learners as a result…” One more step for me to understand that there is a direct correlation between how I talk to both my children and the influence it WILL have on their behaviors. I have noticed that as we have toned down our reactions with our son, (now instead of admonishing and punishing when he shows detrimental behavior we simply address it as calmly as possible and move on), he has become noticeably calmer and more controlled himself. Who would have thought such a simple strategy was so important. Now of course we got through this 7,000 times a day, so the behaviors are still shining through, but I am calmer and his rants and rages are diminished. No longer do I have to endure his hour long anger, or hyperactive rants, its all over in minutes. I again, come back to...

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