My experience is either telling me:

1.) I need to chill, I must have insanely high expectations that may never be met and perhaps I should start taking some kind of a happy sedative drug while my girls are in school.

2.) I have my work cut out for me…clearly basic “Leadership” “Communication” and perhaps even “Management” or “Parenting 101″ requirements are non-existent in public schools, not to mention basic self care (health/diet/exercise), is it my imagination or are 90% of the teachers overweight? Maybe this comment should be in my first thought but if someone is teaching about healthy habits…shouldn’t they be practicing them too? I see this as “work” that I need to do advocacy and whistle blower-wise.

3.) I might need to just let her try it out, be diligent about providing ample learning opportunities at home and volunteer a lot. I feel like this is maybe what the school would like to see? It is difficult because as a non-paid problem fixer (how I see it) shows me a list about a mile long starting with things like:
*Get them a microphone that works or offer to help as a MC for their next meeting
*Offer to teach a course in public speaking that will show them a few techniques to quiet a noisy room of side talkers
*Explain the relevance of a “schedule” and recommend that part of encouraging adherence to one requires basic when/where/how information being communicated (ideally in advance and upon arriving to said events)
*Set up a parent email list for them/parents to communicate with
*Create a simple 8 item list (similar in style but shorter than the *to-do list I am writing here) that gives the outline for the content being discussed quietly in front of the parents so that we could have a slight bit of understanding, and for the ESL parents at least have something that someone can translate for them (I saw one table where a little bit of translation was happening and was a tad jealous they got the one on one information!)
*Creating an actual “Red” sign for the “Red Table” (it has a red dot that is barely visible that is red…nothing else)
*Repeat for other tables
*Print and laminate multiple copies of the kindergarten schedule to post around the room or at least by the sink for parents to see and take note of
*Print and laminate copies of the class lists so that parents can learn their child’s friend’s names, maybe offer to compile a communication list
*Send along any awesome dietitian or personal trainer groupon deals that come along

4.) Focus on finding a good private school (I have a few in mind) and get the applications in…holding her back a year to enroll next year if I need to.

5.) Get started with homeschooling!! The world really is turning the way of Idiocracy and Wall-E!!!

6.) Move to a snobby (rich?) neighborhood (outside Seattle?) where standards are being upheld

So yes number one might be the most accurate, which I am bummed about. Doesn’t everyone want to nourish the future? Are we really working to turn our children into clones who don’t think and either fail or excel (or both) when it bores them?

Sigh…

It caught my interest of course because I had JUST been at the symposium which talks about a lot of the same issues and how to deal with them. I immediately scanned the table of contents and the index and was VERY happy to not see much/any attention being given to the option of sending ones child away. There is a lot of great tips and examples about how specifically to and NOT to interact with ones child when there is a difficult emotional situation.

I’m just over halfway done and I absolutely recommend the book! I really like that it is more modern and relevant than the ones I have seen from my parent’s old collection from when I was a tween…which of course I felt were gross over-simplifications. This book is good general advice for dealing with anyone who is loved and going through a hard time.

So far I’ve learned that YES…my family and definitely I am lacking sleep…personally I know that I am because that was a HUGE part of what led to my recent flare-up that I am still getting over. It was interesting though because I could see some examples of my daughters in there as well and I think what I’m most grateful for is the healing ‘what to do now’ kind of information and stories that are being shared. I don’t think we give the girls adequate time to sleep. I think for me it was a lazy/being ‘cool’ about it hing where I sympathized with my daughter (4) who wanted to stay up with me, and she is so persistent that I figured I might as well let her stay up and just go to bed with me (yes we co-sleep) and so life happens, she’s still with me and most nights staying up late enough that I fall asleep or at least get too tired to get back up by the time she falls asleep.

I’m absolutely always up for doing what is best though, for me and for her, at least when I am SURE that it is the right thing… I have been a nag for a while about how we need a routine evening schedule for the girls, but now I MEAN it. I think a huge part of what I love about this book is that a lot of it gives me back up to things I either learned and forgot the source of or just intuitively knew that I had a hard time rationalizing to both my husband and myself.

So now we’re on the journey to us all sleeping better, tonight is the first night that both girls were asleep AND both adults emerged awake (hence me writing this at almost 11pm). It was very sweet, I got her to let me leave by letting her wear one of my socks and promising I’d be back to snuggle after I finished some work. I haven’t gotten to the baby part yet, that’s hard, she’s on me sleeping now so hopefully I’ll learn some insightful tricks on this one…

Hope you have a lovely restful night!!!

The growth of the troubled teen industry, including wilderness camps, therapeutic boarding schools, and boot camps, has given rise to allegations of inhumane treatment of youth, and exploitation of families who are desperately seeking help for their teenagers. This topic, previously the subject of two hearings in Congress and two special reports by the GAO, was examined further on Feb. 19th 2009, at a meeting sponsored by the Alliance for the Safe, Therapeutic, and Appropriate Use of Residential Treatment (ASTART) and CAFETY on Capitol Hill. This timely meeting was held several months prior to yet another death arising out of negligence (Sagewalk Wilderness Camp) and the closure of Mount Bachelor Academy as a result of substantiated abuse allegations considered part of their therapeutic milieu. (Both programs are owned/operated by Aspen Education Group, subsidiary of CRC Health).

Please help increase awareness of this issue and distribute widely.

14 years later, seeing the story in TIME about the school I ran away from has hit me hard. On some days I feel kind of vindicated, and confirmed in my reasons for choosing the streets over this kind of residential treatment. Other days I feel lucky, lucky that I was brave. smart and capable enough to pull it off and get away, not to mention surviving on the streets long enough afterward to be able to continue life afterward.

I do not believe that it was the correct decision to send me away. As an adult looking back, and looking at teens I see around me I strongly believe that what most teens really need is attention and help in cultivating their interests. If you skip all the time between my being sent away and my graduating from high school and leaving home for college, it looks like it all worked out as planned. I always loved taking any kind of art class from pottery to drawing, origami, and much more. Upon graduating High School I went to and graduated from Parsons School of Design. Just to make one alternative obvious to me they could have put me into art therapy, or into an art class.

Parents however naive aren’t necessarily the ones to blame however, most parents who send these kids like myself to these ‘therapeutic’ treatment centers consult with people claiming to be professionals in the field, people called “therapeutic consultants” or “educational consultants” whose credentials are extremely hard to find and I’m willing to bet in many cases are non existent or come from a kit they ordered online. In my case the person recommending that my parents send me away (I’d been caught smoking pot) never met me. I’ve worked with children and I do not believe anyone’s untrained description of a child OR an adult can be taken as fact, or even as strong evidence regarding what they ‘need’. An adult who has been through challenges or is well trained should work with the child to do an evaluation and ideally eliminate the need for a child to be legally kidnapped into the desert.

I just read some absolutely comical and sickening ‘journal’ entries of a reporter claiming to have had a taste of the experience of one of these wilderness camps and it is laughable. It is very lighthearted and implies that the camp is not a boot camp but more of a boy scout camp. Comical, I wonder if she saw when they made a kid dig his own coffin? How often they are allowed to clean their bodies? My memory only recalls about 3 camp showers over the 54 days I was living in the desert, with only one change of underwear every week or two, is that humane?

Parents need to know there are other alternatives to this, and also need to learn the importance of community. If I had other family members or other members of the community who knew me and were looking out I would have had other places to go for help, for guidance. I agree with the title of Hilary Clinton’s book “It Takes a Village” wholeheartedly.

Today I realized that someone needs to figure out how to make parents aware of these needs and alternative actions they can take to preserve their relationship with their children and guide them to succeed by building their strengths, not breaking them down. It is my goal to step into this role as educating parents, teachers, guidance counselors and more about their options. There are not any real standards in this industry of ‘fixing’ teens and it is time there was.

Most of the kids getting into trouble are already broken down, it’s the last thing they need.

So we got to the school, I went in and had to stop and talk to the owner of the daycare for a little while. We are behind in payments and it’s getting to a breaking point, our only income is my unemployment and we don’t qualify for any assistance programs because we aren’t both ‘working’ when in reality, hubby and I are both working like CRAZY to make some money, there just isn’t any money yet, we’re also both applying to jobs like crazy but what is on the news is true in that it isn’t as easy as it once was to get a job. Verdict was that I promised to go try and apply for a DSHS Emergency Childcare Assistance and after that, if it was denied again we would try to file an exception with the city, as there is a special program for all pre-k students to keep them in school. It’s an odd loophole that we are in because we don’t have real jobs and so our work counts for nothing and these programs require working parents.

So I pick up my daughter and explain what we are doing, and then we all get in the car and drive on up to the clinic which is a great little place that seems like it is run 100% on love and donations so if you have any kind of soft spot for this kind of work please donate because they need it. Their site is: http://animaltalkrescue.org/help.html We brought kitty in, and the lovely lady there who has seen soo many cats come and go gave us her sad evaluation which is that the kitty seems to have the symptoms of distemper, and would likely not be living much longer. Fortunately K was having fun playing with the cats who were up for adoption and looking at the birds, lizard and other fun animals they had visible as well. I think she was hungry at this point as well because she didn’t seem too overly concerned.

We left the kitten with them, they will keep an eye on it and let us know if it survives/dies and hopefully it will live and if that is the case it will get fixed and vaccinated. We will keep or release the cat at this point depending on it’s temperament, they explained even letting it go will help reduce the feral cat population because the cats get territorial.

Also, we became pretty passionate about the cause, there are at least 2 other kittens in the litter this kitten came from and of course the mother cat as well. We are borrowing 2 traps from the center and will be trying to catch the other kittens to get them all taken care of. This is of course if they are still around, we have not seen them since we brought in yesterday’s kitty which is either because they too have distemper and aren’t moving much or hopefully just because it is raining and they have found some safe place to stay.

All in all it was an enlightening experience, I think it is very sad that the kitten will probably not make it but feel good that it will be somewhere safe and warm surrounded by loving people in it’s last hours if that is the case.

Kitty came to us when in pain, was crouched on our front porch and did not fight us much when being put into the kennel. We feel strongly this was for a reason of course because we are like that and we are grateful that we had the experience of helping this kitty, and of course we are hopeful we can help the other kitties as well.

I have joined in the movement called 29 Gifts recently and yesterday was day 2, I’m considering this rescue effort as my gift of the day yesterday, giving the kitten a chance of living and of sharing the concept of rescuing animals with my daughters, one of which will remember but the other one will just hear the stories.

Here are some pictures, the first is our cat Bello, who doesn’t seem to really know what is going on, and the following is the rest of us getting ready for our adventure.

I will follow up with any more Kitties or the Mom Cat if/as we get ahold of them…I’m hoping we’ll get a kitten that we can rescue and keep too! They did say that they are about 5-6 months old and probably domesticate-able still.

Boring is a word that I don’t remember using since I was about 12, maybe 11. My dad used to gleefully tell me how I was acting ‘so eleven’ which is what I remember most about that year so I probably was bored then. Since then though, and now, my life has been chaotic.

In my mind, and out of my mouth, anyone who knows me is well aware of these patterns I’m sure. I constantly am spewing the desires I have for a ‘stable’ or ‘secure’ life with ‘routine’ and ‘predictability’ however I’ve never experienced any of this!! I tell myself that ‘as soon as I/we get through this, things will be normal‘ though it doesn’t happen, even I wonder if I really want it? I think I do, but if I look at all that I do, do I really want that?

Maybe I do want that, consciously but unconsciously I have ‘programs‘ (as my Klemmer trained husband calls them) that are against this, and insist on keeping the chaos rampant in my life. I haven’t been through that program, maybe I will someday and then I’ll understand, at this point I don’t though. I am too busy chaotically living my life of chaos trying to make it calm down enough to learn what this word ‘relax’ means, because right now I don’t know.

My biggest fear is that my daughters will only know me as this high strung multi-tasking fake “normal wanter” who can’t seem to figure out what the words normal or calm really mean. It’s clear that my family, dysfunctionally raised from an established military upbringing thinks I’m nuts, or have such unrealized potential.

For me the concept of normal is about as foreign as this flying spaghetti monster I hear about.

For me sending my children away so I can go repetitively do the same thing over and over and over again sounds like pure insanity, I don’t understand the appeal. I haven’t been able to get a job anyway though so it’s not like that is a real option.

What I really want, is for my life, to make sense. Just a little bit of sense. Right now everything is a mess, I feel like an interruption to the world around me. My daughters watch me feverishly accomplish nothing spending my time online, while I explain that I’m trying to make money to make things better though nothing happens to support this.

I agree enthusiastically when people tell me I should write about my experiences, my experiences being sent away as a child to survival camp, running away from boarding school, MS, 9/11, stroke, and the abusive relationship that created my beautiful little girl and that I left behind etc. etc. but have I written? I have written a little bit, here and there but enough for a book? No. Do I know how to get started? I know I need to write, but I don’t know what comes after that. Do I try to take care of myself even? Yes, though I don’t think I’m doing a very good job, I’m getting medical treatment to feel better but all of that is leading to piles of bills that just remind me I’m broke. Then I start working, or writing, and then my daughter cries, or wants to be picked up, to drink mommy milk, go outside, or eat some food.

And it feels like I’ve failed, either at the working and writing by attending to their needs, or at mothering by spending time writing or working.

Balance is another word I need to become more familiar with. Maybe after I meet, my balanced self, I will be able to introduce her to my little beautiful girls who deserve so much more in a mom. I know she is in here somewhere.

I am looking forward to expanding the site quite a bit to include much more resources as well as links to relevant articles for us Moms who aren’t ‘just’ dealing with kids but also MS.

For me, I feel like I was lucky in a strange way to have been diagnosed so young…I was 18 years old when it all started, that’s when I was diagnosed with a stroke of all things, and after many many tests a heart surgery and more, at age 20 I was diagnosed with Multiple Sclerosis.

The reason that I say I was lucky, is that I found out what I was dealing with, when I was in the midst of getting started with life. I didn’t have kids yet, in fact I was barely in college!! On October 1st 1999 when I went to the hospital for my ‘stroke’ I was in the middle of my very first semester at Parsons School of Design in NYC. I managed to stay in school, though all the medical treatments/tests/appointments I had to go to absolutely affected my GPA, I was determined to not take a year off though because for me it would have been so hard to come back, I knew I just had to tough it out and finish. Which I did, I graduated in May of 2004 along with my class with a degree in Communication Design.

I did eventually of course have kids, my first being born in NYC. That was an interesting situation which eventually led to my becoming a single mom. Technically I always was a single mom as I wasn’t ever married to my ex. The reason that I bring this up, is at first, when I was with him, I felt like I had to stay with him because he had ‘been there for me’ when I was going through all of this medical hell. The relationship had turned emotionally/psychologically and almost physically abusive at this point and I left him when my daughter was 6 months old. At the time I didn’t think twice about it, he’d threatened my life at that point and there was no way in hell I was going to let my daughter see this, she deserved better.

Soon after the prospect of being a ‘dating’ single mom was a bit daunting, though honestly I didn’t think much of it most of the time. I was ‘grateful’ that I was able to filter out the men I dated and the one I eventually married with the disclosure of my diagnosis. That is, I feel, the most beneficial part of being diagnosed when I was young. When I finally got married, I was lucky to know that my husband was fully aware of what he was dealing with, and true to his vows, he has always stayed strong in my times of need and doesn’t bat an eye when I need a little more (or less!) help.

One more quick note, especially to any single dating moms with ms out there…if anyone rejects you…they are doing you a FAVOR. I say this because they are sparing you the pain of getting seriously committed to them and then breaking your heart. They are letting you know that they aren’t ready for that kind of commitment which frees you to find someone who is. I also find that just about everyone I told had some kind of story of their own that they felt made them ‘flawed’ in some way, everyone has their own little secrets and MS isn’t that big a deal unless you make it one.

Back to the point of this post. I am absolutely loving the community that has developed out of MomsWithMS.com and am working hard on making it a much more common and valuable resource for all of us who either are, know, love, or care for Moms with MS. I’m looking into potentially turning it into a non-profit or partnering with a non-profit to make it more official now.

Then I think it was either in September or October..all our contractors at the company I worked for got cut. It was a surprise to most of us, we had a lot of longtime fabulous contractors at the time. Soon after was the first layoff, this one was a shocker, we lost about 30 people, and in a company with less than 200 employees, this was a big hit.

My belly started to show soon after this, and when my husbands contracts dried up, my job became ever more important, I was the one providing health insurance to the family and still bringing in a paycheck. My husband started working with an MLM, and I became curious about that as well and started one as well around the beginning of 2009, though barely doing it at all because I was very pregnant and work was wearing me out, as was the commute taking my daughter across town to daycare, renovations were put on hold and so we were still living out of my apartment from before our wedding.

Next was a layoff of 2 corporate employees from my company, two that were considered the best by many and so this was VERY disconcerting. It was not a huge surprise when on February 27th, about a month before my due date, that along with about 30 other employees, I was handed my papers and asked to leave.

Fortunately this is about the time the COBRA package was reduced (thank you Obama!) this meant I was able to afford to keep our insurance which is/was about $375/mo.

A month and a half later, I had my baby girl who we named Hazel. I had her at home along with my husband, mother, mother in law, daughter, 2 midwives and a wonderful doula. It was an amazing experience.

In the meantime my husband has been working on putting together a company, which I should be able to announce soon in another post.

I had been trying to find work, though I do have a baby with me, as I can not afford to put her in daycare wi/out a job. This definitely hinders the job search. Then June was passing…and I started losing feeling and strength in my right leg and arm.

My MS was flaring up. Yes, I am a mother with MS. I started all of the appointments at this point, to the Neuro, the MRI place, the physical therapy, psychology appointments, the steroid treatments via IV in the hospital for five days, the support group meetings and so on. Soon the talks about what drugs I should be getting on soon, if I should keep nursing etc. were piling up. Also through the NMSS and another group I’m a part of for young people with MS I was approached to help start a local Moms with MS group.

I had already been ‘organizing’,though not very actively, another local moms group, unrelated to MS so I jumped at this opportunity!

While setting up the local one through meetup.com I managed to discover that … omg … MomsWithMS.com was NOT registered!!

Skip ahead to today. I am now the founder of the MomsWithMS.com website which currently is a community for Mothers who have been diagnosed with MS to come and share their stories, support each other, and compare notes about the joys and sorrows we experience on our mothering with MS journey. We currently have 99 members and I’m expecting we’ll probably get our 100th member very soon.

We’ll be out of the apartment and into the house by October 1, just need the plumbing, packing, and moving done. Baby Hazel will be 5 months old tomorrow and is a big, smart, beautiful baby who just started saying “Ma ma”, she’s on me as I type this.

I’m taking all these ‘hard times’ as a blessing, yes I’m still broke as heck but working on figuring out how to change that while also growing this community of moms who like myself find great comfort in knowing there are others out there who are going through the same thing and thriving.

If you know any Moms with MS who might be looking for a place they can talk to people who understand, or has questions about anything they have heard. Let them know we exist. Many of our moms are newly diagnosed and are already finding us through google search when looking for information for mothers about MS.

We launched on July 1, 2009. My next milestone is making a public portion of the site where anyone can come and get information about MS and how it relates to families as well as finding resources, though they can be hard to find, they are out there.