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

What did I get from the Beyond Logic conference yesterday?

“A winter’s day In a deep and dark December; I am alone, Gazing from my window to the streets below On a freshly fallen silent shroud of snow. I am a rock, I am an island. I’ve built walls, A fortress deep and mighty, That none may penetrate. I have no need of friendship; friendship causes pain. It’s laughter and it’s loving I disdain. I am a rock, I am an island. Don’t talk of love, well I’ve heard the words before; It’s sleeping in my memory. I won’t disturb the slumber of feelings that have died. If I never loved I never would have cried. I am a rock, I am an island. I have my books and my poetry to protect me; I am shielded in my armor, Hiding in my room, safe within my womb. I touch no one and no one touches me. I am a rock, I am an island. And a rock feels no pain; and an island never cries!” This brought his feelings home to me more than any therapist, psychologist, psychiatrist or any other person ever could. His anger, his depression, his anxiety – he is pushing away, he is protecting himself, it isn’t that he wants to, he truly feels like he has to – just to survive. When he is raging, when he is aggressive, angry, annoyed, annoying, I will remember this. I will remember this and remember WHY he is this way. This is not conscious, this is at his deepest level, his core. This, when everything else is stripped away, is his core belief. The conference yesterday was full of great information and gave us a renewal to keep going. His progress has been huge, and we know now we can take him where he wants to go, but always and forever his innermost feelings will come back to the words in this song. 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...

When is autism not autism but just a group of autistic behaviors?

I am confused often, and – not only because of my children. My son was diagnosed at 3 years and 3 months with autism. Certainly he had many of the behaviors associated with autism, and after an all day assessment both at home and at the care center, we left Columbia SC that day in June with a new ‘label’ for my son. I was sort of stunned when we actually got the diagnosis, despite already knowing that he did indeed have many behaviors associated with autism. So why not expect an autism diagnosis then? Just running down the list of indicators, he had check marks for repetitive behaviors, no imaginative play, tics, stimming, significantly limited/delayed speech, tip-toe walking (which interestingly he has only ever done that on that particular day), echolalia, aggression, noise aversion, sensory issues, skin picking, the list went on. Why did I even entertain the autistic, the bipolar, schizophrenic, ADD, ADHD or any of the other labels he has been given. Mostly it is because for a long time it was the only thing that we could hold onto when faced with his strange and often out of control behaviors. It somehow made it easier to cope knowing that he possibly had a neurological disorder and wasn’t just ‘being difficult’. Oh my goodness how we were thrown through a loop trying to figure it out. He certainly has displayed the traits for all those disorders over the years, and even now he still sort of meets both an ODD and possibly ADD diagnoses. I was always a little confused by the professionals inability to agree with each other on the diagnoses but mostly as their recommended therapies remained the same, I didn’t delve too deep. Many times though I would sit in a therapist’s office and check boxes, knowing the goal posts always moved, wondering whether to mention a behavior that had fallen away, wondering if it was really necessary to note everything that he had done in the past or just stick with the present. His behavior changed rapidly but for a long time still remained within the parameters of his diagnosis. Even in the past year we met with a pediatric neurologist who diagnosed him with PDD-NOS. I have slowly become convinced that his behaviors are just manifestations of his limited abilities to cope. The more we work to make him feel safe, secure, wanted, loved and heard, the more he recovers from this ‘autism’ spectrum. So then the question becomes, did he ever really have autism? If he...

Beyond Consequences, Charlotte NC Parent Class, Oct 29, 2011

An email I received from Heather Forbes: I am very excited to be presenting my Beyond Consequences Live parent training to you on Saturday, October 29! Thank you for signing up and committing this day to you and your family. I promise to deliver an encouraging, hopeful, and fun training. At this point, we still have space available for more participants. So I am writing to ask for your help. Could you help me by spreading the word of this training? Here are a few ideas: 1. Invite a friend to come with you. 2. Add this event to your place of worship’s bulletin. 3. Announce this training at any local community meetings (PTA’s, neighborhood associations, Boy Scouts, Girl Scouts, 4-H, etc.). A flyer can be printed out from the following website: “here” 4. Contact your local paper and have them do an article in their LifeStyle section (you can see an example of an article from a Washington State paper If you can make this happen, I’d be eternally grateful! 5. Have your favorite radio station make an announcement or have them interview me on their morning show. 6. If you are an adoptive or foster parent, check with your agency and let them know of this event. I can remember being in a dark and lonely place when my children were younger, literally not knowing what to do as a parent. I don’t want others parents to go through this anymore! Any help you can give to reach out to other struggling parents by getting the word out about this training, the better! Thank you and I look forward to seeing you and being with you all day on Saturday, October 29. 2011! Press on, Heather T. Forbes, LCSW Beyond Consequences Institute, LLC 1630A 30th St. #488 Boulder, CO 80301 407-965-1131 (office) 321-206-2067 (fax) www.beyondconsequences.com *** P.S. This is essentially a free training (you only need a copy of one of my books), so be sure to include this information when getting the word out. Thank you! ****   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...

I do a lot of thinking in the shower!

It’s often the only place I can go to get any quiet time. That was until we moved to our new house, it’s smaller with only 1 bathroom instead of 3. Now my quiet time is more often than not interrupted by someone needing the toilet or worse, wanting to join me in the shower! If only we could sell our other house we would have the luxury of affording a small but adequate 2nd bathroom facility, but that for now, will have to wait. Anyway today the guy came to measure for our new windows. This house was built in 1940 and while there are some cute features, the single pane wooden windows are not part of that. As we suspected the windows are sporting the yellowed lead-infused paint from 71 years ago and the EPA wants to know that we are replacing them to code, so new windows it is! While the gentleman was here I asked for one of his test kits (ever the opportunist) and ran it over the paint in the bathroom! Yes, you guessed it, bright pink in about 3 seconds! I was so dismayed. Luckily it’s only the peeling paint (I never thought I would start and finish a sentence like that). Anyway, some of the paint is peeling off above the shower and the backside of it tested positive for lead. I must now figure out just how to remove the paint without making it a worse contaminant because the flakes are worse than the painted surface! Of course lead poisoning would just about be the icing on the cake at this point wouldn’t it? Does it ever end? The American Academy of Child and Adolescent Psychiatry suggests that “… lead exposure is one of the most preventable poisonings of childhood. Data from the Center for Disease Control (CDC) shows that 6% of all children ages 1-2 years and 11% of black (non-Hispanic) children ages 1-5 years have blood lead levels in the toxic range. Lead is a potent poison that can affect individuals at any age. Children with developing bodies are especially vulnerable because their rapidly developing nervous systems are particularly sensitive to the effects of lead.” Worse they also state:”…Exposure to lead can have a wide range of effects on a child’s development and behavior. Even when exposed to small amounts of lead levels, children may appear inattentive, hyperactive and irritable. Children with greater lead levels may also have problems with learning and reading, delayed growth and hearing loss. At high levels, lead can cause permanent brain damage and even death....

Reassessment day at Brain Balance.

So today was our final assessment, we have completed all 36 sessions as of last week and we had 2 days this week to get a progress/final report which we will go over on Monday. My initial thoughts though are that he is right where he needs to be. Indeed our last traffic light report (progress report) 2 or 3 weeks ago indicated that he was very close to meeting all his goals. I smell a graduation party! It’s interesting to note that really, in our home life, we have only really seen the changes over the last 2 weeks. Little things that make life so much easier all round. He is calmer and just far more appropriate than ever before. In the last 2 weeks we have had 4 very successful playdates, yes I did type 4! One of the dates was in the park where he didn’t even know the kids, this is usually not a great recipe for success.  But this time, instead of being tagged as the odd kid the other kids simply included him in their game of tag, then happily moved around the playground as if they had known him forever. This is very unusual – in many cases one or more of the kids (usually a girl) will notice he is a little off, a little “not like the others” as the Sesame Street song goes. Simultaneously the other kids will fall in line behind the one who notices and slowly the game turns from tag to “get the odd kid” where all the kids start chasing B and he in turn becomes the ‘monster’ or aggressor ~ a game of him against the other kids, with playful but not so nice overtones. It’s not a fun thing to watch. We also took a trip to Chick Fil-a around 6pm one night. The play center was packed, again not usually a recipe for success. He was in there around 45 minutes, there had to be 30 other kids in there screaming, playing, chasing, and jumping. He was very appropriate, didn’t get over excited, played typically and left without argument the first time I asked. Such a nice change from our usual escapades where I have been known on occasion to physically carry him out of there, apologizing for him spitting or aggravating another kid. It’s not just out and about, today in the bath, he requested ALL his super hero’s. Typically Spiderman is only allowed to play with the other characters from Spiderman 3. They all must be the 6 inch movable characters...

We bought a trampoline!

Dangerous? Perhaps! But since it’s erection a mere 24 hours ago my children have been outside jumping like crazy people. Can you say sensory integration? Best purchase ever made so far. They were outside at 7 am this morning and have requested lunch be served on a towel, picnic style, on the trampoline. Sadly as yet it hasn’t helped their overall interaction, he just told her to “shut her pie-hole!” a tone that was set when he woke up this morning. I am not sure really why she puts up with him but thankfully she does. So, trampoline – yes, goes on the list of things we should have purchased a long time ago!   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...

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