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

What happens in our downtime?

Being forced to spend 12 weeks in MA is not the worst thing that could happen. Beach and sun are good for everyone. http://www.dancingnakedaroundbonfires.com/wp-content/uploads/2017/06/File-Jun-16-12-26-53-AM.mp4 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 window)Click to share on Pocket (Opens in new...

What a week!

What a week this has been! We arrived in Salisbury, MA., last Sunday after two arduous days driving from South Carolina. Saturday was gorgeous, Sunday not so much. Torrential rain fell almost the entire way.  We snuck onto our campground right before the closing bell at 8 pm. The 13 hour and 16-minute drive turned into a whopping 20+ hours. Traffic and weather all conspired against us to block the views and turn a relatively doable two 7 hour days into what it actually ended up being – but we made it, road weary and full of anticipation. Once we got to our assigned camping pad, we set up shop. We do not travel light so this was no mean feat. Several hours after we arrived, two soaking wet and absolutely exhausted parents fell into bed. S certainly took the brunt of the rain as his outside duties when camping far exceed mine and for this, I am eternally grateful. 😀 Monday morning at 830 am we reported to the clinic. Everyone was super nice, chatty and helpful. .We had to take initial assessments which took us a shade over an hour. As is typical, the girl did her own but the boy face deep in his phone had me fill...

PANS, PANDAS and Lyme Disease – what’s the connection?...

PANS, PANDAS & life after a diagnosis of Lyme Disease So in the 3 years since I put away my keyboard and started focusing on other things, a lot happened in our lives. In August 2014, when I wrote this post, I had no idea what was even possible for us going forward. We had settled into the uneasy idea that our underlying issue was simply developmental trauma disorder or another genre of attachment disorder. We were sold on the idea that the emotional trauma from being placed for adoption at birth had altered his ability to reason rationally. Therefore, the residual pain and anger over this rejection were driving the outrageous behavior we were and had always been seeing. Everything I read about the different attachment styles matched much of what we were challenged with at home. It seemed to fit the best of what we had heard so far. Following that path of reasoning, we found and paid a searcher $1500 who set about finding his birth family. It took less than a month and we had a real, valid, biological connection for him and several months later we headed to his birth country for a family reunion. While this genuinely touched his heart and shifted his...

Options for IEP and 504 kids who are still failing…...

Life for us is a mad scramble, every day the same but different.  Again, other parents drop their kid at the school gates and kiss them goodbye until 3 pm; whereupon they pick up their dysregulated, tired but usually happy, child.  I on the other hand drop my kid off at 8.20 and run home, jump in the shower and wait patiently for the phone to ring. Sometimes we actually make it to his allotted pick up time of 11.35 am but more than once the phone has rung around 10.30 with a “Mrs… please come and pick your son up, he is in the office blah blah blah”  It is not yet 4 weeks into the school year and we have already had an agreement for early dismissal, 2 earlier picks ups and 1 afternoon suspension. I feel for them, I really do. Because I screwed up and got frustrated with his first round of public schooling and placed him in a private school to try to minimize the impact of life (subsequently home schooling for the 4th grade), his IEP went dormant.  Fat lot of good that one was anyway. Regardless, I should have fought harder for what he needed, but instead I was ignorant and we...

Now to what we really believe is going on… Reactive Attachment Disorder (RAD) a spectrum....

Anxious attachment, adoption trauma, anxiety, borderline personality disorder… Sadly From Survival to Serenity no longer encourages the sharing of the graphic but if you want to read further, and I heartily encourage you to, on Saturday, August 23, 2014, From Survival To Serenity published a post titled: Educating About RAD.  If you read my last post you can tell school is an exceptional challenge already this year.  I will be using parts of From Survival to Serenity when I go on Monday and advocate again for my child.  It won’t solve the issues he is having, (thankfully his teachers and principle are determined to help him stay the course), but it will possibly help explain him.  The post has some very practical, well presented information that in turn can help any of us with a RAD child (however mild or extreme) educate the people who are charged with taking care of our little peanuts for the better part of the day.  Forewarned is forearmed as they say! 😀 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...

Their uniqueness may very well be their strength in the future …...

But we must get them there before that can happen.  The only problem is getting others on board with that philosophy too. Society has an ingrained need and desire to make everyone conform to their own standards, especially true of public schools.  Often the desire to drill down and over focus on the negatives drives many kids to act out more not less. Even if your child has no diagnosis of Tourette Syndrome, I found this very concise rundown of behaviors than can pertain to so many different issues we see with our kids, both diagnosed and un-diagnosed. Understanding Behavioral Symptoms in Tourette Syndrome.  “… Children with TS may be punished for symptoms and behaviors that educators decide are disruptive andpurposeful.  Even an empathetic teacher who recognizes the student as a child who has abilities, may be frustrated because of the difficulties in understanding the cause of the behavior. Dr. Ross Greene, noted psychiatrist and author of The Explosive Child, and Lost at School, writes that, “It is your explanation of the behavior that leads directly to how you respond to it.” If, for example, your explanation for a child rolling his eyes while you are speaking to him is that he is being rude and disrespectful, your response might be to reprimand and discipline him....

I have never seen a kid apologize for being so oppositional WHILE being oppositional!...

I feel like I am in the twilight zone most of the time, he cusses like a sailor, is disrespectful, angry and irritated by anyone and everyone for no reason other than he might have seen the back of their heads.  My husband and I are so non confrontational it is probably unhealthy, my children on the other hand keep life exciting by being exactly that! How does one taper the oppositional in a child when every possible strategy backfires? Sometimes all we can do is ignore the rhetoric and let it pass, but then any bystander feels the need to interject.  Such a misunderstood, unrelenting, hard to handle, hard to ignore, stress inducing behavior that every armchair psychologist feels the need to weigh in on. Onwards and upwards, school awaits…. 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 window)Click to share on Pocket...

Dr. Amy Yasko

If you are looking for an explanatory read and roadmap to help recover your child I would suggest reading:  “Autism, Pathways to Recovery” available as a free PDF download from Dr. Amy Yasko’s website, containing information that we can use to really help recover our children.  The book is a fairly easy read and helps explain much about cleaning up a child’s health and environment to aid recovery.  It also explains the methylation process and the cycles that go on in the human body to create homeostasis and well being.  Many of our children have real, biological illnesses creating their mental health and physical wellness challenges.  In addition to offering parent support, products and a wealth of great information, in my personal opinion, Dr. Amy Yasko’s site offers much in the way of explaining how we may have gotten here and more importantly, what to do next.  Find Dr. Amy Yasko here.  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...

May is Mental Health Month

May is mental health month, don’t know that it can be considered a “celebration” of mental health, but it’s high time we started discussing and being open about these challenges in our children and likewise, in adults. I have been reading various blogs and posts in regard to this month’s subject and found this: “In an attempt to increase knowledge about mental health issues among today’s youth, California passed a new law in 2013 requiring the addition of age-appropriate mental health curriculum to the Education Code. This law specifically states that all public schools within the state of California need to revise their Health Framework to include the integration of mental health education for grades K-12. …  Our hope is that other local schools take the initiative to incorporate mental health issues into their classrooms. We also hope that other states recognize the importance of mental health education for youth and consider implementation of this new law. Let’s work together to better the future generations of America!” Read full article from Psych Central here. Wouldn’t it be great if that could really be achieved?  Sad that it is even needed, but so many of our kids are either pushed out of schools and end up isolated in a home-school...

« Previous Entries Next Entries »

© Loving the Spectrum