Wednesday, December 30, 2009

New Years - UGH!

Are you dreading tomorrow? Do you want to just slap the next person who asks you what your resolutions are? Is it even worth getting a babysitter to go out?

Hey, I hear you! New Years can be filled with just as much pressure as Christmas and Thanksgiving. People are expecting you to be grand and giddy and you just want to acci-purposely take an extra sleeping pill.

Let me tell you a secret. I do my resolutions when the new school year starts, so Friday is only going to be a checkup. Here’s my resolution list and my double check:

A: take what I have and enhance it = this means that I’m grateful for what I’ve been given and will run with those gifts.
For example, I can put on muscle like crazy, but don’t have the lungs for running. So, I’m going to focus on getting a really cut body. I won’t give up on cardio but I’m not going to judge myself against my best friend because she’s a marathoner.

B: passion, passion, passion every day!
This is passion as a life force. Pure enjoyment of my environment. You can’t possibly give joy to others if you are not overflowing in it yourself. I’m going to paint in my house, wear more jewelry, try cooking and eating new foods, find a way to link my teaching skills into a service, and do a core training class just to be sure my life is juicy every day.

C: Slow down and throw out = Double check
1. Is this (whatever activity or person) bringing or fulfilling passion for me?
2. Is this (blank) helping me reach my personal goals? It could be a great deal or opportunity, but is it sidetracking or pushing me forward?
3. Is it scary? If so, I’m probably on the right track.

Let’s be honest, if you are really passionate about something, you’ll do it. Nothing can stop you. But if your heart and soul aren’t in it then it means you are trying to live up to someone else’s goals for you. I don’t care what it is, weight, smoking, spending, cleaning, if you tackle it like a kid, focused and determined while having fun, you can do it. If you feel you “have to” and its drudgery then you’ll hate every minute and quit by February.

When you love who you are, your love will overflow to everyone else. The one drop can become a tidal wave. That’s the real goal of 2010! And yes, the babysitter is SO worth it.

Friday, December 18, 2009

A Different Disney

Last night we went to see Disney’s new movie, “Princess and the Frog”. This film is about a servant’s daughter, Tiana, in New Orleans. Her daddy had a dream of opening a restaurant, and when he passed away, the dream became hers. She always worked 2 jobs to save money to buy the sugar mill and restore it to fulfill her dream, even when her friends were begging her to go out. Of course, there is a prince. But here he is plum broke and quite lazy; though full of suave charm and love of life.

What I loved about this movie:
1. The heroine is black. Besides Pocahontas and Mulan, this is a huge diversion off the Disney princess usual carriage route. Tiana is kind, fair, hard working and quite sassy.
2. It’s set in New Orleans, so you get to learn about a bit of American culture = the people, habits, architecture, food, customs, and languages.
3. The underlying theme is that people and family are more important than money. Tiana learns that all work and no play are just as bad as the prince who learns that all play gets you nothing. Dreaming combined with dedication is needed to aspire….but if you have no friends or family to share your success with, life is very hollow.

Of course, my kids’ favorite was the line was from Ray, the firefly, “Don’t you make me light up my butt!” Can’t beat basic humor with them.

No matter the age, elementary to high school, I think this is a good movie for you to open up discussions with your children about money, customs, our country’s sordid history, human rights, working hard for a goal, and choosing friends.

Friday, December 11, 2009

Trust Your Gut

Yesterday I went to my post-operation check up. My surgeon asked how I was doing (feeling great), if I was taking it easy (ummmm, can you define “easy”), and if I’ve tested out the system with pizza (no, lasagna). I got a big check mark of health and my scars (there are 4) are healing okay. Then came the pathology report.

“Well, it says here that you had chronic inflammation and stones. I’m glad you made the decision to have us proceed. You must have been in some pain for a long time.”

I so badly wanted to say, “No sh*t Sherlock” but I refrained. He’s a nice man. Neither the swelling nor stones showed up on the ultrasound before the surgery, so forcing him to take my money and remove my gall bladder was strictly my doing. Woo Hoo – I’m not a crazy hypochondriac! And it’s not just A) stress, B) too much junk food, or C) too much liquor in college. Okay, I’ll give you the stress, but otherwise I eat a lot of organic foods and, believe it or not, didn’t drink in college, not even much pop.

What this is telling me and you is that as women we have a 6th sense and we need to follow it. Call it women’s intuition, gut feelings, instinct, para-normal, mother nature, whatever….we all know we have the ability to tune in and we need to pay heed to it more often. I knew there was something wrong with my body and I had to go to the extreme surgery to prove it.

I believe that sometimes we become so strong on the outside, especially to others looking at us, that we forget to pay attention to our insides. Not just our physical, but mental and emotional too. As you are reading this, start at the top of your head and work down, asking yourself “How does this feel?” Make an inventory of yourself. When you are done, make some appointments to correct/discover what isn’t right. If you regular doctor isn’t helpful, try an alternative. Be sure your hormones are level, your back is aligned, and your body is detoxed. Those three things are your solid foundation.

Trust yourself! You know you the best. There is no trophy for being in pain the longest, whether physical or emotion. It doesn’t make you a better mother or woman. I am learning the hard way about taking care of myself first, so if you can learn from my mistakes, all the better. I am rewarding myself tomorrow with a concert by Stephen Lynch. I plan to laugh for hours and flood my body with good, healing endorphins. Cheers to the power of laughter!!

Thursday, December 3, 2009

Simple Holiday

Well, it’s that time of year again. The hustle and bustle of the holidays tends to overshadow what the holidays are actually about = peace and giving. We are bombarded with a media blitz on the perfect table, perfect meal, perfect gift, perfect families who have perfect personalities…..But when asked “What is your favorite memory or tradition of the holidays?” it’s never any of those media “perfect” things. You hear a lot of “baking cookies with my mom”, “stringing popcorn on the tree”, “going to midnight service on Christmas Eve”, “the smell of the tree nursery”, “serving dinner for the homeless”, “playing cards until past midnight with my uncles”, “my grandma’s spiced apples and cider”.

We all say the holidays aren’t about money, but let’s not fool ourselves. Buying becomes a duty, rather than an inspiration of love. Spending money or lack of money is always on the brain. Kids may understand that the gift they want is out of the budget, but that doesn’t hide their disappointment. If there are divorced parents, many times the holidays are a competition for time and presents.

Collectively we can call a stop to the madness! We’ve just now skipped into December and you can start new traditions now. Think about your most wonderful memories. Now, think about the things that will need to change so you can incorporate the traditions you really love. Something has to be let go! Probably many things need to be let go if we’re being honest with ourselves. And nothing has to be in stone – you can try something else next year. Call a Cease Fire. Do some yoga and simplify.

Here are a few things we do with our family:
*Our kids get 3 gifts and a stocking. One from Santa (unwrapped), one from Mom and Dad, and one from siblings.
*We try to watch the 25 days of Christmas on ABC or supplement with our own videos.
*We cut out, bake, and decorate cookies with real pastry bags of frosting. Yes, it’s a mess, but the rule is you get to eat the broken cookies and every year there are pictures of dark colored tongues.
*Cinnamon rolls on Christmas morning, which is spent alone at our house if at all possible, in PJ’s all day.
*We “adopt” foster children and load them up with the winter essentials and small toys.
*Check out holiday books from the library (okay, and buy from B&N, I’m a sucker for books). The Polar Express is still the favorite.
* I always loved spending the night with cousins after Christmas, playing with everyone’s new toys, and now my children are doing it. I love to watch them get excited about being with their cousins.
*Eating Kringles, Leftsa, German Almond cookies, Chow Mein cookies, and almond dipped pretzels.
*Going to see the Trans Syberian Orchestra.
*My mother-in-law’s side of the family do Christmas in the summer or fall. Everyone can fly/drive in nice weather and less risk of illness thwarting the fun.

Let me know what traditions you love, what you are proudly ditching, and maybe what things you want to start this year. We can all come together, share ideas, and make the holidays about peace and giving to ourselves as well as others.

Thursday, November 12, 2009

Money Tricks

Money Tricks:
The general consensus among most parents, but especially sped parents, is that our kid’s medical bills are astronomical. I’m guessing most of us are on a payment plan with the hospitals. That’s our life. Plain and simple. I’m here to tell you that while our money may be counted for every penny, there are ways for you to set some money aside for yourself. Yes, I dared say it. Money just for you….not your children. Here’s a few tricks just for you…..

Did you know you can claim some medical expenses on your taxes? You will need to use an accountant who knows what they are doing with this particular topic! Fact is SPED kids have a lot of medical bills and a lot of extra expenses that you can’t claim on your taxes but that make life livable (like Sami’s toilet platform, clothes that fit, organic food). That’s where the accountant can help you sort through. The only time we were able to use the medical tax deduction was when we built our house. It was very tricky because we had to itemize each special expense compared to a normal house building expense (example: a normal door was $88 and ours were $108 because they were wider – we could use the $20 difference in our figures). Check with your accountant, but as I understand it, anything surpassing 7.5% of your salary spent for out of pocket medical stuff could be used as a tax credit type thingy (hey, I’m not an accountant). So, if you make $50,000, you’d have to spend more than $3750 in out of pocket expenses. Every dollar over the $3750 could be counted – not the first $3750. Check out the IRS website for specifics at http://www.irs.gov/pub/irs-pdf/p502.pdf . It’s worth it if you are really racking up the hospital visits and living accommodations. Even your mileage counts.

And speaking of IRS regulations: A 401(k), 403(b), and 457 are all retirement plans you can contribute to through payroll deductions (ingeniously named after the codes). Each has limits to the deposit amounts and each has it’s own rules about how long you have to keep the money in the account (and penalties for early withdraws – it’s retirement money, not a savings account). The great thing about these plans is that they are automatically done in payroll so you aren’t writing checks with what’s left at the end of the month and the limits are much higher than personal IRA’s so you can really sock away some funds for yourself! And if you are lucky, your employer will match some of your contributions for a little extra boost.

Knowledge is Power:
For each of these plans, you can choose Mutual Funds or Annuities to invest in. Both are just collections of stocks and bonds in nice little packages.
Stocks = pieces of ownership in a company, higher risk
Bonds = basically IOU’s, low risk, low returns

I like to think of Mutual Funds as pizzas. You have stocks and bonds that are like the toppings all spread out so that everyone gets a little bit, and you are only buying a slice of the pizza. Lots of people can put in their $5 and get a slice too. It’s a way to diversify and obtain many different stocks without having to put all of your nest egg into just one company (Enron anyone?). Mutual Fund companies differ in their hands on approaches. Some let you do most of it, some have more involved advisors.

An Annuity is a contract with an insurance company where they will invest your money for you in the same stocks and bonds as Mutual Funds (some even have Mutual Funds under their Annuity umbrella). It’s not life insurance! It’s just them investing your money. Typically, annuities have more fees involved than straight Mutual Funds because they usually come with some kind of guarantee (for instance: they may guarantee you won’t lose your initial investment) and they are supposedly watching your money for you more than other companies.

With both Mutual Funds and Annuities, you will need to watch out for surrender fees!!! These are fees the company charges you if you decide to move your money before they are willing to give your money up. I’ve heard of some companies having up to seven years before you can freely take your money without penalty. This usually comes into effect if you aren’t happy with your “profit” returns and want to change companies. Again, these are retirement accounts and not savings or emergency accounts. It’s not money for your kid, it’s money for you!

In a general sense, 401(k)’s are for profit businesses, 403(b)’s are for non-profits (like charities and schools) and 457’s are for government employees (police, fire, schools, city government, etc…). Did you notice that schools are listed twice? They are the only people who qualify for two separate plans and they can double up on their retirement savings. Lord knows they deserve a huge retirement after teaching for 30 years!!! The 403(b) and 457 are NOT the state retirement pension plans - these are on top of the state plans - where you control the dollar amount and investment company.

Your age, number of years to retirement, and goals should determine what Mutual Funds or Annuities you invest in. If an advisor asks you first how much money you have, turn around and walk out! They should find out what your life is about and where you want to be first, so they can work backwards to find a plan for you. It’s all about you baby!

A Flex 125 Cafeteria Plan is a “money for today” plan rather than waiting for retirement. This plan allows you to put money away in a special account in order to pay for child/adult care or medical expenses that your insurance doesn’t take care of. I love the medical side of this plan for chiropractic appointments, orthodontic braces, Lasik eye surgery, contacts, mileage to and from hospitals, co-pays, deductibles, prescriptions, Motrin, those great heating pads for your back, just all kinds of things for anyone living in your house that is on the same tax return (not just the employee but everyone)!! Think of it this way = if your local drug store told you that you’d be able to get 25% off most everything in their store if you had a coupon, you’d do it in a heartbeat. With the Flex Plan, the employer’s payroll department puts the money in the Flex account, then after you pick up your items from the drug store or visit the doctor, you turn in your receipt to your employer and they reimburse you.

The child/adult care portion works the same way. Get a receipt from your care provider and turn it in for reimbursement. You are already paying for the daycare, so why not save 25% by just turning in a receipt. That’s a no brainer!
The only thing is that if you put in too much money and don’t spend it within the time frame, you lose it. So be careful how much money you designate. Just don’t let that little thing stop you from participating!

All of these plans (retirement and Flex) are pre-tax which means the money is pulled out of your paycheck before the government taxes are taken out, saving you around 27% (depending on your tax bracket). So, if your normal salary is $1000 and you put $70 into your 401K and $30 into your Flex, the government only sees $900 to tax you on instead of the original $1000.

Another cool thing is that many employers will match some of what you are contributing to your retirement plan and some will even put money into your Flex 125 or a HRA (Health Reimbursement Account – it’s like a Flex account but the employer is putting their own money in for you to use). That’s free money!!

These are fabulous plans! Remember all of those goals you’ve made? Wouldn’t the extra money you are saving here go a long way to bringing those goals to fruition? You are so worth it!!
Heather

Thursday, November 5, 2009

Spending Money

CASH – SPENDING THE CHEESE

“If one asks for success and prepares for failure, he will get the situation he has prepared for.”
-Florence Scovel Shinn

I know, for some money is as exciting as an orgasm, and for others it’s about as fun as digging dirt from under your toe nails. It’s not the money that brings you happiness, but the lack of it sure is stressful. No matter your situation (single, married, one child, 8 foster kids) you need to be in control of your money….rather than it controlling you.

First on the agenda, check out your debt! Do you know where your money is going each month - to the penny? I’ll be honest, I hate penny pinching, but it needs to be done because therapy, wheelchairs and surgeries cost money and I hate debt more than I hate watching nickels. Keep a spending diary for 2 months and see where your money is going. “I don’t remember buying the kids books last week” is a phrase often heard in my house. (of course, with my lack of sleep I’m lucky I remember where I live most days). I should have bought Kleenex and Target stock.

Once you know where your money is going, work on getting your debt eliminated! Dave Ramsey and Suze Orman have great books! Dave’s is more Christian and couple based, and Suze’s latest book is straight talk just for women. Both are easy to understand and follow so you can pick pieces from each that are comfortable to you, as long as you are following a plan to move forward. Both have TV/radio shows you can listen to if you are short on reading time, but we moms who have used them think the books are worth it.
For those with a partner, you’ll need to have some money that is all your own, in your own name only. This means a bank account and credit card. Put your allowance in it, any gift money, and money you get from selling your own stuff (not his prized baseball cards, but YOUR stuff). This is where Dave and I don’t agree, but to each his own. I’m just being practical here and Suze hits it right on. The account doesn’t have to be kept a secret from your partner, but they shouldn’t have access to it either.

Which brings me to “allowance”. Everyone should have spending money of their own to piss away in any way they choose, no questions asked. And it shouldn’t depend on how much money you bring into the budget – as in who has the greater paycheck. Whether its $20 a week, or $20 a month, you need to have some fun money!! This is important to your independence, to visibly show your kids that responsible budgeting includes taking care of one’s self, and it brings some positive “yippee skippies” to your daily duties because you know, in the back of your mind, that you have money and therefore you have options. Put the hospital on a payment plan and carve out some fun money for yourself. Your mental and physical well being are top priority!!

If you need a bit more help (and who doesn’t?) you can get FREE financial planning from the Special Needs Planning Center. They work with parents of SPED kids all over the country, giving clients a nice 3-ring binder full of the essentials of legal and financial advice/accounts/crap to protect you and your kids. They are super at explaining everything in the binder without being snotty know-it-alls. And, if you really don’t want to know that stuff (me!), they’ll just take care of it for you, as their customer service is outstanding. Even if you don’t have SPED kids, you can use their services for a reasonable fee. Contact them at www.specialneedskc.com and to read their newsletters you can look at www.specialneedsplanning.blogspot.com.

And what about money for your kids if you aren’t around? Your death isn’t something you want to think about, but who will take care of your children and how will they do it (do they need a new wheelchair equipped van, or house, do they need to move closer to your child’s hospital, do they need to quit their job) are things you need to answer today! If it’s not legally taken care of, you’ve left your kids to the court system. (Did you know that in some states, if you adopt foster kids, then die, they go back to foster care rather than to your family unless you have the legal papers stating otherwise? Scary!)

Do you need a Special Needs Trust? What is your back up plan for getting your child health insurance if you aren’t employed? What if you are in an accident but don’t die? Who will take care of you and the younglings? These questions really suck ass big time, but if you love your kids you’ll be a grown up and face them with confidence.

A non-profit organization is now doing their part to help distribute this information to parents. The Gifted Learning Project has developed an educational DVD, Financial Planning for Special Needs, and has made it available to the public. The DVD was created to help parents gain a basic understanding in how planning for their child with special needs is different. www.giftedlearningproject.org


REMINDER: neither I, nor my friends, are worth suing if you don’t like Ramsey, Orman, The Gifted Learning Project, or the SNPC. We aren’t endorsing here!! You have a brain and can use your own judgment. There are probably some financial advisors and estate planners in your community if you’d rather meet face to face. You’ll just have to do some searching. Get recommendations from family and friends. There are financial planners at all of the investment companies who sell their company’s investment products. There are also some stand alone advisors who are brokers that can invest your money for you with many different companies. The important thing is that it gets done ASAP!!

I know the stock market tanked, and we aren’t in a trusting mood, but that doesn’t take away everything else that needs to be done legally. I personally love the guys at SNPC because, honestly, they take care of me and it’s something I can take off my plate and not worry about. Who can ask for more…..well a winning lottery ticket would be nice.
Heather

Thursday, October 29, 2009

Responsible vs Sacrifice

I’ve heard a lot lately, “a parents’ duty is to sacrifice”. I think we’ve mistakenly taken Responsibility and replaced it with Sacrifice. They are not the same interchangeable words.
Responsibility = the state of being reliable and accountable.
Sacrifice = to give up as a means to an end, to sell at a loss.

Since when is life supposed to be about how much you lose? Think about the lesson you are teaching your kids with the sacrifice attitude. You are telling them through your actions that they are the center of the universe right now but once they become adults and parents they have to lose everything about themselves….their identities, their joys, their passions. How depressing to have those expectations!

“You can either hold yourself up to the unrealistic standards of others, or ignore them and concentrate on being happy with yourself as you are.”
―Jeph Jacques

I think this quote is right on. And the hardest to live by. The expectations I used to have for myself were off the charts in the unrealistic category. I honestly thought I could work full time, be a full time mother, a full time housecleaner, a full time cook, a full time wife, a full time daughter, a full time friend, a full time nurse….all the while not asking for help from anyone or be thought of as weak and not worthy. That is pathetic! Seriously, there are only 24 hours in a day and nowhere in the schedule was relax, enjoy, savor, pleasure, a full time me.

I want to show my children that life is a pleasure even while they are responsible. I never want them to think that sacrificing their whole lives is the best and only way of life. I love to read, watch movies, do the puzzles in the paper and play volleyball. I am not giving these things up for my children. They have asked if I can stay home and not go out and I tell them that Mommy needs to have some play time with her friends. It makes Mommy happy. And when I’m happy I want to do extra nice things when I’m home.

“If you can give your son or daughter only one gift, let it be enthusiasm.”
―Bruce Barton

Maybe you should make a list of what you feel are the sacrifices and expectations you have placed on you : from yourself, your parents, your spouse, your kids, your friends, your boss. Now, which of those do you hate and resent the most doing? Come on, I know there are some if you are very honest with yourself. Okay, delegate those. Right now. Find someone else to do them. Tap into your deepest resources. Think outside of your norm. Start shifting things off your plate. Once they are off, do not put anything else on your plate…better yet, trade in your dinner plate for a dessert plate.

Here’s a few ways I’ve downsized to my dessert plate:
Scheduled time off on the family calendar. Even if I just sit at Barnes and Noble I’m out of the house.
All the grandparents are on Facebook and can see updated pictures whenever they want.
Dry cleaners will pick up and deliver if I need it.
The grocery store will gather my list up. Only used it twice but they are better at sticking to the list than I am!
Dishwasher cleans more than just dishes!
Take the time to organize (and throw out) closets, holiday decorations, cupboards, fridge, and freezers.
Food Swap with others. Fills your freezer up so you are just heating and eating.
Delegated half the chores to my husband and remind myself they are his and not my concern.
Live by the “touch it once” policy. Take care of things right then, don’t lay them on the counter.
Send the kids to the neighbor’s once a week. It’s a trade because I take theirs also.
Christmas is one gift from Santa, one from parents, one from sibling, and stockings. That’s it.
Each kid can do one activity at a time. Right now it’s Scouting on Thursdays.

Now, I have time to spend with my kids teaching them the real lessons I want them to learn in life – take care of yourself, take care of others who truly need help – which, to me, is being responsible.
Heather

Thursday, October 22, 2009

Keeping Healthy

These tips are from Dr. Vinay Goyal who has a bunch of dignified letters after his name.

1. Frequent hand washing.
2. Hands off the Face approach. Resist all temptations to touch any part of the face.
3. Gargle twice a day with warm salt water (or Listerine).
4. Clean nose once every other day with warm salt water. Either use a netti pot or blowing nose hard and swabbing with Q tips soaked in warm salt water.
5. Eat natural foods with Vitamin C. If taking a supplement, be sure to also take Zinc to boost absorption.
6. Drink as much of warm liquids (tea, coffee, soup) as you can all day.

Viruses can only get into the body by the portals of the nose and mouth. It's not as much a problem coming into contact, but the proliferation. These 6 steps help avoid the proliferation by ridding the body of the germs at the start. They are cheap and easy ways to help keep your family healthy, or at least give you a boost in the odds.

Heather
(Thanks mom for the list)

Thursday, October 15, 2009

Overcoming Obstacles




Amazingly enough, my children are in a heated discussion yet again in the car. Why is it they only fight in the confined space of the car? So, here’s the tale end…

Me: I do think that baby [doll] is wonderful! You can save your money for it.
Her: You are not being a nice Mommy!
Him: Yes she is, Sis. You just can’t have every doll. (This from the boy who wants every Lego and Hot Wheel)
Her: I’m going to run away to Grandma’s. She’ll buy me a baby.
Him: You can’t run away. You can’t even walk.
Her: Oh, then I’ll crawl away.
Again, I’m laughing, to my daughter’s disgust and indignation.

How quickly she thought of an alternative to a problem! Remember when we were kids and our minds could run free? Not thinking of obstacles as permanent “no’s” but just as a detour? When did that stop?

Well, I’m here to share a few obstacles we run into with Sami. She is only 33 inches tall and probably won’t clear 4 feet as an adult. Making our home usable for her and us is quite the challenge. My husband and I are around 5’9” and our 9 year old son is already close to 5 ft. We also need to take into consideration her brittle bones, not just her height. She isn’t like the average dwarf/little person who can climb things. Her muscles are affected by her disease as well and falling isn’t an option.

Our solutions: Her bed is a mattress on the floor, cloth boxes in cubbie shelves turned on their side hold everything at her height from clothes to books and Polly Pockets, mini chairs that are heavy and sturdy are for her reading, but all of this takes up considerable floor space. Imagine only being able to use the bottom 3 feet of a room to store everything. Yes, we could and do put things on higher shelves, but that takes away from her freedom of independence….though it does help with her ability to communicate what she wants and ask for help.

Our latest “Freedom Project” was the toilet. Tired of using baby training potties, we bought Sami her own tiny toilet (like they use in pre-schools). Unfortunately, it’s still not short enough. So Grandpa, Daddy, and I got to work on a platform that would be safe enough Sami could climb up on and wiggle her pants down to do her business. It’s not a quick process, but she can do it on her own with some finesses and patience. (Just don’t tell her that her dad and I are close by for an emergency. We aren’t ready for that much independence yet. No one needs another ER visit J ) I measured and drew up the plans, the men made the alterations and built it in a day. Carter even helped with the painting.

Here’s 2 pictures of the great work the men did! There’s always a way to get around the obstacle. Open your mind, free it from conventional “wisdom” and let the ideas flow. Heather

Thursday, October 8, 2009

Amazing Women

Believe it or not, I’ve added another hat to my life – Daisy Scout leader. My son has been in Cub Scouts for three years and loves it, so my daughter has been waiting patiently for her turn. I thought it would be much easier for me to be the leader than ask another mom to adapt everything for Sami. Luckily, I have a neighbor who will be my co-leader if something happens (gee, like a break) and I can’t be there.

The good little student that I am, I’ve been reading about the Girl Scouts for the past week. The founder is Juliette “Daisy” Gordon Low. Infections made her mostly deaf, but she used that excuse to never take “No” for an answer – literally pretending she didn’t hear someone’s protest of not volunteering. Started in England as Girl Guides, the program was adapted from the Boy Scouts. Not only did the girls learn to tie knots and survive in the outdoors, but also how to be proper ladies with manners and kindness for others. Daisy was from Savannah, so she brought the Girl Guides program to the US in March of 1912, funding the project in both countries with her own money.

This started me thinking about all the amazing women in history that I don’t know about. My education in school was most male centered. Not that it was bad, but lacking representation of ½ of the world population made it incomplete. I did some searching and came up with a small list of women who have made a huge difference, but not always everyday-household names.

If there are women who you think should be known for their greatness, tell us! Our sons and daughters need good role models in every shape, form, skill, talent, and country. This list is in no way all encompassing as there are just too many to name, but it’s a good jumping point….

Mary Kay Ash
Clara Barton
Elizabeth Blackwell
Helena Petrovna Blavatsky
Olympia Brown
Dorothea Dix
Mary Dyer
Sylvia Earle
Marian Wright Edelman
Temple Grandin
Hypatia of Alexandria
Helen Hunt Jackson
Harriet Jacobs
Pope Joan
Ada Byron Lovelace
Juliette “Daisy” Gordon Low
Sybilla Masters
Rigoberta Menchu
Maria Montessori
Lady Deborah Moody
Christiane Northrup
Ellen Ochoa
Huda Shaarawi
Ellen Johnson Sirleaf
Sally L. Smith
Elizabeth Cady Stanton
Merlin Stone
Niara Sudarkasa
Mary Church Terrell
Madame CJ Sarah Breedlove Walker

For a more extensive list to search, discover, and share with your kids go to www.distinguishedwomen.com .


Wish me luck with this new endeavor. And give me a shout if you are in need of some cookies :)
Heather

Thursday, October 1, 2009

Depression Update

I’ve had some people ask, so I thought I’d give an update on how the medications are going. The generic anti-depressant I started with made me horribly sick. I’m talking violently sick and so exhausted I could barely function at work and had nothing left for when I got home with the kids. Not a good combo but I stuck it out as prescribed hoping my body would adjust to the foreign meds.

Well, eventually I gave up (more like my body revolted) and asked the psych doctor for help. He switched me to Lexapro – the pure stuff. Again, it took some time for my body to get used to it, but my moods are much more even keel now.

Though it might not be the best phrasing, it feels like I just don’t care much about things. If the house isn’t picked up I notice it, but it doesn’t send me into a mini rage. I stopped making decisions about things, letting my husband do it. I ask the kids to do their chores, and if they don’t, I can calmly go in and take their favorite toys away. No yelling or anxiety, just “matter of fact – tough it out – consequences for your choices – it doesn’t affect me” kind of attitude.

To be honest, it’s really nice! I don’t feel responsible for everyone and everything anymore. I only have to worry about my inner-instant circle and the rest can fend for themselves. It’s freeing! I can say “No” and “I don’t care”. Maybe empowering is a better word.

It’s sad that I needed the meds to give myself permission to let go, but that could be a symptom of our society. I resisted meds for many years thinking only weak people took them, but that’s not true. I think it’s more from overly high expectations and not enjoying the moment. It’s from living the “shoulds”.

One huge change is my thinking from “I’m stuck” to “I can, it’s my choice and I’m choosing this”. I don’t have to stay in this job, this city, or even this country. I’m choosing to and that makes all the difference. Practical and possible are not always opposites if you are doing what you need to do for your health and happiness.

Monday, September 28, 2009

Sami's birthday tea party











Here's a few pics from Sami's tea party. She had a wonderful birthday party! We invited a few girls to dress up ("a real formal party Mommy") and bring their baby dolls. Since Sami is so tiny, we just had everyone sit on the floor. "Tea" was flavored water, plus cheese, crackers, breads, fruit and veggies. I used cookie cutters for the cheese and breads...huge hit!

Thursday, September 24, 2009

Sami's birthday

9-24-09

Well, today is Samantha’s 6th birthday and we just finished a birthday breakfast at Panera. When I think back to the beginning of her life I’m amazed at how far she has come. This is our story….

At my 20 week sonogram appointment, the doctor told us that the little girl inside me had very short and bowed limbs. His face, though, told me more – sorrow and regret. Something was very wrong. We were quickly referred to the specialists at St. Luke’s. (In case you’re wondering, an adult cannot deliver a baby at Children’s Mercy, even if the child will need their care right away after birth. Don’t ask me why. I assume because, technically, I’d be a patient too but not under 18.)

At St. Luke’s we had many tests run, an amniocentesis (which does NOT feel like a bee sting!), and high-tech ultrasounds up the wazoo. All to find out that Sami was either going to have Campomelic Dysplasia or Osteogenesis Imperfecta type II. Each time I went in there were more and more breaks of her bowed little bones. With either disease, the doctors told us (7 months into the pregnancy) to make her funeral plans as she wouldn’t live past 24 hours.

Luckily, we have a good friend who is a director of a funeral home. He came over to our house and gently guided us through the process and paperwork. That night was agonizing…feeling Sami kick inside of me while I sat at the dining room table talking over details and procedures. Finally, when the meeting was done, I went upstairs, lay in my son’s bed, and cried while holding him. He was having such a rough time at school and I thought that my sadness and anxiety over Sami must be affecting him. We would find out later that he has Aspergers Syndrome, a high functioning autism, on top of everything else.

As the day of delivery loomed closer, I began to dread it. Sami was safe in my belly, though broken, and I felt as if I was putting her to her death sentence at delivery. How could I do that? It ate at me night and day. I also questioned whether to finish the nursery or not. If we finished it and she died, I’d have to walk by it every day. If we didn’t finish it, it seemed as if we were giving up on her.

The morning of September 24th, nursery completed, Samantha came out wailing, “I’m here, deal with me”. Though I had a major c-section to get her out safely, she was still broken in many spots and healing other fractures all over her little body. We stayed at St. Luke’s for 4 days until a room opened up at Children’s Mercy. Once there it was confirmed that she had OI type III, the most severe a person can live with, instead of the lethal type II.

A new protocol came out of Canada’s Shriner’s Hospital to give children with OI a drug called Pamidronate. What that medicine does is slows the body’s natural tendency to rid itself of bad/old cells. Osteoclasts are in your body eating away at those bad/old bone cells so new, healthy bone can grow. OI is a genetic disease of collagen. Sami doesn’t have enough collagen and what she does have is so poor quality it’s not helpful. But, it’s all she has, so we don’t want the osteoclasts taking it away. The Pamidronate is given through an IV that takes about 4 hours each day, 2 days in a row, to administer. When Sami was an infant, she received treatment every 6 weeks, but now we are down to 16 week increments. Between breaks, appointments, and drug treatments our car could drive itself to the hospital for the first few years.

We also had adjustable rods put in her arms and legs. The first few surgeries didn’t go so well (pins poking out of elbows, YUK!), but now they are great. We found an OI Clinic in Omaha, NE with a fabulous ortho-surgeon that fixed Sami right up…..okay; as good as she can be fixed. The telescoping rods don’t prevent breaking, but do give her bones stability from the inside. Those rods will probably need to be changed out next year.

We still worry about common things like colds – coughing can crack ribs that could puncture lungs, falls, hearing loss – those little bones in your ears can break too, and a million other things for her safety. To be honest, it’s normal for us so we don’t give it much thought until asked about it, or read ‘Handle With Care’ by Jodi Picoult….tough read for me.

Starting Kindergarten brought a lot of Sami’s needed adaptations to the forefront. We built our house for her, but the school had to adapt and it was a challenge to think of all the details throughout her day in school. Kudos to her elementary staff and teachers!!! They bravely walked up to the plate and are doing wonderful.

Samantha is a feisty girl, with sass bigger than her dwarf 3ft frame, a quick mind, and spirit that is contagious. There are many times when we are supposed to be disclipling her and have to leave the room to laugh first. Her determination lets her bear crawl all over the place, take steps with her walker or around furniture and bring out her fashionista by changing clothes five times a day.

Sami is also sensitive. She hates being a dwarf and asks when she will be big like the other girls. Really, the dwarf part can be worked around (except at amusement parks – too short for the kiddie rides) but the brittle bones are what prevents her from doing most activities. It breaks my heart to have to teach her about discrimination from other people so early and hold her while she cries because someone made fun of her. The next OI conference is Aug 2010 in Portland, OR and will be interesting for Sami to connect with other kids who are just like her – not that there are many around the globe – but still she isn’t alone. WWW.OIF.ORG

Luckily, she has an older brother who dislikes her enough to pick on her for no apparent reason and parents who refuse to give in to all her whims…..unlike her grandparents  As much as we can, we are mean to our kids (according to them) and make them do chores like all other kids, eat healthy food, limit their TV and computer time, and have good manners. She has friends everywhere we go and was once used in a marketing campaign for the Children’s Hospital in Omaha with her own billboards and magazine ads!

Samantha has taught me so much in these 6 years. How to be humble, how to laugh, how to cry, how to ask for help, when to accept and when to fight, how to take care of myself, how to be a better parent, a better woman. Being a parent to kids with extra needs means patience and creativity, schedules and open minds, good karma and loving yourself….all taught the hard way. I can’t wait to see what they teach me over the next 50 years!!
Heather

Friday, September 18, 2009

Bones and Immune System Health

Check out this article on bones!!

http://www.extraordinaryhealth.com/EHNewsletter/09172009/tabid/1878/Default.aspx?ContentPubID=509

Thursday, September 10, 2009

Beauty

Even though I work full time all year, when the kids go to school I feel like starting over. I do my resolutions in Sept rather than Jan. This year I want to concentrate on my beauty, inside and out.

Did you know it’s estimated that French women spend one third of their salaries on beauty products and one third on lingerie? Can you imagine spending 2/3 of your salary just on yourself? What a luxury!

Well, I’ve decided that I’m going to make more conscious decisions about the time and money I spend on myself and my appearance. Whether I like it or not, appearance makes a huge difference in my feelings and in other’s perceptions. I’m not decking myself out every single day in formal wear – I work in a warehouse – but moisturizing at night, putting on jewelry, wearing nice panties are all things I can easily do.

Here are some items I’ve discovered that give maximum impact for little effort:
1.Dior’s Show Mascara – Sephora - $24 - Holy cow! My tiny pale lashes are huge with only one coat!
2.Tom’s of Maine toothpaste – $4 - I even buy the strawberry for my kids.
3.Mary Kay’s Eye Make Up Remover – really does take off everything gently, even waterproof mascara that others claim to take off but can’t.
4.Arbonne’s Eye Cream – The miracle of removing “freckles” and “laugh lines”
5.Mary Kay’s Microderm Abrasion set – makes my face smoother than a baby’s butt
6.Victoria Secret Beauty Rush Lip Gloss – 5 for $20 – the favors are fun and I like that I can feel my lips are covered in moisture. I favorite is Cherry Bomb because of the subtle shimmer. My daughter is addicted to the super glossy ones though 
7.OPI nail polish – $8 (but get last year’s colors for $4) so many colors and if you do the base, color, and top coats they’ll last for weeks. I love putting crazy colors on my toes.
8.Sally Hansen Insta-Grip for nails – instantly dries every layer!
9.Eddie Bauer T-shirts - $14 – You can get V neck or round; short, ¾, or long sleeves; in a rainbow of colors. These t-shirts look great with jeans, yoga pants, or slacks and keep their strong color through many washings. Dress them up or down, layer them, you just can’t go wrong.
10.Eddie Bauer No Iron button up shirts – $50 - tailored darts give you curves in the right places. Again short, ¾, or long sleeves. Look fabulous wash after wash.
11.Black slacks. Pants are hard to fit women because we are all different sizes so I can’t tell you a For Sure Hit brand that will work for you. You need to find a pair that hang properly straight from the hips so you have a long clean line all the way down to the floor. I like Express if I’m wearing loafers. But I have a dickens of a time finding ones long enough if I want to wear heels.
12.Coldwater Creek wraps - $40 (but they constantly have coupons) – right now they are two toned to get double the fun. These are so wonderful for throwing on in the spring and fall when the air can be chilled but you don’t want a bulky coat. I also love them for movie theatres which seem to always be set at Arctic Chill and my kids can snuggle up in them in the car.
13.Clarks shoes – I’m afraid these are a splurge, but the quality and comfort are amazing. Sandles, mary janes, flats, heels, boots, you name it they all feel good. They aren’t date-night-sexy but steady quality everyday shoes that help you look put together.
14.Silpada jewelry – Sterling silver from casual to sexy. Again, a splurge for quality. Most days I wear the Huggie earrings which are simple thick hoops right at my lobes.
15.French perfume. My favorite is Escada. I received a perfume lesson once that said French perfume makers use the real ingrediants, like rose petals, and not simulated stuff. So the fragrance is more pure and reacts better with your skin. A little bit will last you a long time.
16.Jergens Natural Glow body lotion – $7 - subtly and gradually gives you a warm tan
17.Burt Bee’s – just about everything from head to toe for me and the kids. Royal jelly is supposed to be a Superhero and I can say my skin is nice and firm.

Obviously I’m leaving out inner beauty here, but we’ll catch that one later.

What are some of your favorite things? Share with us and we can all be beautiful.

Wednesday, September 2, 2009

Help Me Find Peace

Help me find Peace

For the first time I’m asking for your help in my blog. After work today, we will pack up the kids and travel to Omaha, NE. Tomorrow Samantha will do a full round of body x-rays, bone density tests, hearing, teeth, PT, OT, ortho surgeon, the whole shebang. It’s her annual trip to the Children’s Hospital in Omaha for their OI Clinic (Osteogenesis Imperfecta – brittle bone disease) but this year we’ve been battling more pain in her little legs and therefore have more concerns to think about.

What we need is peace in our hearts and minds. The prospect of yet another set of surgeries for rodding isn’t too far off and weighs heavy on all of us. Of course Sami is scared. And my chest hurts seeing her in physical and emotional pain.

If you haven’t heard, rodding is the procedure of breaking the bones in various spots, straightening them out, and drilling holes into each section to place an expandable rod (like a telescope) in. The bones are supposed to grow around the rods, except Sami’s leg bones like to bow and are doing it even though the rods are in. This makes them less able to help the fractures that already occur because they aren’t as stable.

Type III OI is very rare, and really, Sami’s life is a miracle and an experiment. What is difficult is the unknown … will another surgery give her more stability for 4-5 years? Will the pain of the surgery outweigh the benefits? Is this her pain for the rest of her life? Is she better off in the wheelchair or crawling on the floor? Will the weight on her legs bring more lower back problems? I DON’T KNOW! And I can’t feel like we’re making the right decisions. I’m not naturally a gambler and the experts don’t have certain answers with her.

Please think about, pray, meditate, and send good vibes to us tomorrow while we are at the clinic. We need peace to make the best decisions for Sami and she needs faith that she’ll be alright.

Thank you !!!
Heather
www.oif.org for more info on OI.

Friday, August 28, 2009

School Review

8-28-09
School Review
“An investment in knowledge always pays the best interest.”

―Benjamin Franklin

Now that school has started, I wanted to recap a few things for everyone. If you want the full articles you can check out the previous blog entries or drop me a line. I’m very pro-education and have tremendous respect for those people who dedicate their lives to our kids. Teachers work 60+ hours a week for little pay and benefits. And for those in the special education world it’s even more time and effort.

As a parent of two special needs kids I want their school year to be as smooth as possible. Today I’m on potty patrol. Sami has an injured arm, leg, and hip so getting on and off the potty is a fragile weight lifting dance. I’m very thankful I have an employer who understands I need to leave when the school calls (and nature calls). I could be bitchy and demand the school deal with things, but I’d rather be flexible now so when I do ask for big things they are more likely to accommodate us.

If you or someone you know is new to the SPED world, here are some tips:

An IEP is an Individual Education Plan. This plan came out of the Individuals with Disabilities Act (IDEA). It is the framework for your child’s day at school and the services they need to receive. Your child must qualify under state and federal criteria to have an IEP; it’s not just a given because they have a disability (this means a day’s worth of testing). All decisions for your child are made by the IEP team which consists of parents, teachers, therapists, a case manager (usually the special education teacher), and a district representative (usually an administrator in the building). No decisions can be made, or actions taken, without the signatures and agreement of every person on the team.

If you have ANY concerns, thoughts, or ideas, you MUST speak up during the meeting and have it documented. This isn’t the time for shyness. Be calm, clear, and open to suggestions. Work with the district to find compromises and solutions. You know your child best and the staff needs to know what tricks work best with your child. Make a list and bring it to the meetings. If he or she needs some quiet time every two hours, then say that. Most likely, your school can provide a space within a classroom or library for some quiet time. If your kiddo does better with a snack in the afternoon, you may have to provide the snack, but they can find a place and time to give it. If he or she needs a special bus for transportation to and from home or daycare, you need to be upfront about it. Does your kid have a special routine at home? If so, let everyone know it and they can try to mirror some of it at school, while you change your home routine to fit the school’s normal activities (eat at same time, quiet time, etc….). Everyone involved is going to have to COMPROMISE, including your child.

A 504 is actually Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA). Section 504 is a civil rights law to protect people with disabilities from discrimination because of their disability. There should be a 504 coordinator (usually a vise principal or counselor, but probably not the special education teacher) and a team like the IEP team to help with the accommodations. Notice that a 504 is not something that guarantees your kid will have an IEP. This is separate. A 504 is basic accommodations to help override impairment so your child can have the same public education as everyone else….this is not an individualized plan for educational learning…in other words, this is not to accommodate mental or emotional disabilities that effect learning, but accommodations for physical surroundings. For example: your child is deaf in their left ear. They can have a 504 plan that states they need to sit in a certain spot in the classroom. That’s it. The kid then has to perform up to the teacher’s standards and receive the grades they earned like everyone else.

I have one child with each plan. My son with Aspergers has an IEP, and my daughter with brittle bones has a 504, of which will follow them to college if need be. They both have an adapted day at school with special services. Both plans look and work very similar, but the legal paperwork is slightly different.
In most states, there are programs for children ages 0-3 where you can begin therapies (First Steps, Early Intervention, etc.). You can ask about these at your County Health Department. Starting at age 3, most school districts have an Early Childhood Program you can begin the legal IEP/504 process with to receive therapy and additional help in a half day pre-school class.

To continue our vocabulary lesson, “LRE” is Least Restrictive Environment. This is the biggest stickler and fighting point you’ll read or hear about from other SPED parents. The concept is to place your child in a situation that is the least restrictive for their learning = where they can blossom the most. Each child’s abilities will determine their own LRE. Here are a few different scenarios:
*In most cases, LRE means spending most of the school day in the regular education classroom, like everyone else, with some accommodations. That is called “mainstreaming” or “inclusive”. The accommodations could be as simple as having an aid to help with motor skills or a certain seat.
*The LRE could mean being pulled out of their normal classroom for some special classes in another room (usually the SPED room or a “resource” room) a few times a day or week, working on specific skills. For example: a child with Aspergers may be pulled out to work on social skills with a small group.
*For some, the LRE is being in the SPED room with 2-4 other children for all day specialized instruction. This is a “self-contained class”. They also can integrate into a regular class for story time, recess, etc…
*Finally, there are some children who need an alternative school. You need to check your fears in place here – you heard “alternative school” and your anxiety raised – don’t think I don’t know. It’s not the fault of you or the child, but their actions may not make it best for your child to be in a regular school. The alternative schools can provide even more attention as they do not have to educate the masses of kids in the district.

The number one fact you must understand is that school districts have budgets just like you and me. And there is always more needs, kids, and school days than there is money. Right now many districts are doing some major shuffling to keep as many services as they can.

There is a huge difference between letting your child fail in order to learn how to get back up and not giving your child the tools to succeed. The school district is required to provide adequate tools for your child but they can’t make your child use the tools or to bend the rules so your child gets an “A”.

My recommendation is to make sure you are assigned to a seasoned teacher ….someone who isn’t on their first or second year. New teachers are full of life and ideas, but since they don’t have a routine down yet, they are making frequent changes in the school day routine to see what works for them and that’s not good for SPED kids. I’m not doubting their abilities as teachers, I’m just being practical.

If your child has a mental, emotional or social disability I suggest asking for a Triage each morning with a staff member. During this morning meeting, your child will find out if they have a substitute teacher, if the day will look different (fire drill), organize the papers in their backpacks, and see how their mood is. If they are in a funk mood, there is no point in continuing onto class and getting in trouble. The triage can halt the negative pattern so they can be successful the rest of the day. It could be any teacher in the building, but the SPED teacher would be ideal. He or she can then relate your child’s moods to the rest of the team and do extra checks on your kid if necessary that day. I, personally, love the triage for my son each morning. There was a huge difference in his daily success rate once we started the triage process. Wish I had thought of it sooner!

I hope your school year is fabulous, your child receives a superb education, and you are able to take more time in caring for yourself as a priority. I’m drinking the last bits of my Quik Trip Hot Chocolate and Almond Amaretto Cappuccino combo. It’s been a long week of injuries and sleepless nights for all of us and the $1.28 I spent at QT this morning was a welcome treat for me. I better hit the potty myself before Sami calls :)

All my best,
Heather

Friday, August 14, 2009

Recieve graciously

Receive graciously
Do you feel that asking for help means you are weak? That you are a failure as a parent because you can’t take care of your kids by yourself? That’s what I used to think. I’ve been independent natured since I was a child and didn’t understand those people who stayed close to home to be near their families as adults. Now I see that I’ve missed out on a lot of support over the years.

No matter if you like Hillary Clinton or not, she was right that it does take a village to raise a child. You need a group of different personalities, different talents, all shapes, sizes, and ages, to support each other. Sharing responsibilities and gifts helps all of the people rise up to their very best.

So what do you do if your family isn’t close by? Gather up some girlfriends, reach out to the school, get in touch with the charities.

Speaking of charities…..Since you were blessed with children that have a few special needs (irony is dripping), be sure to sign up for the wonderful things charities offer. Turn your situation into a positive experience. Make A Wish, The Dream Factory, The Shriners, Easter Seals, and many others can help you out with all kinds of things for your children. Dream vacations, hot tubs for therapy, elevators, new van with chair lift, whatever you need for your child, there is probably a charity that can help you get it. You aren’t alone and it’s okay to ask for help! The people who work for the charities want to give back to those who need a few more blessings – and that’s you! It’s a win-win for both sides. By accepting their wonderful charity gifts of time and money, you are giving to their need of filling their own self worth, and the world keeps spinning. The best thing is if you are then able to pay your blessings forward to another mom who needs help.

The places to check for charities:
-children’s hospitals
-social workers
-county health departments
-city/state/federal governments
-Easter Seals
-Give Kids the World
-a business that has a product you need (many will donate)
-Chamber of Commerce
-organizations/foundations for your child’s diagnosis
-churches
-librarians are amazing at finding resources
-SPED department at your school district
-SPED department of the teaching colleges

Point is, there’s no reason to be stubborn and do everything by yourself….how is that making a positive impact on you or your child? Take what the world has to offer because you are contributing to the world. Give to the next person, even if it’s just a truly warm smile – it will come back to you – and you can pay it forward again. Just by surviving each day with a positive attitude, you are giving others hope and purpose in their lives, so let them give to you. Receive graciously. Smile and say “Thank You”. Be simple. No gushing. Put meaning into those two words. Let them give, let yourself receive.

Friday, August 7, 2009

Be Still

Be still.

Being still is very hard for me. Activity is addicting. I jump from one task to another and it almost gives me a high. Checking things off a list makes me feel like I accomplished something. It also allows me to hide from myself and everyone else. I lose myself in the tasks that need to be done and don’t have time to deal with the highs and lows of life.

What I have learned is that I need to be still. I need to let other people do things for themselves as much as possible. I have to consider giving less to others and doing less for them. UGH! That seems insurmountable since my kids have huge limitations on what is possible for them to mentally and physically do….and it’s so much faster and less aggravating if I just do it myself…..and I can be a martyr and receive accolades of high public opinion of myself.

Ah, but there isn’t a high public opinion. The irony is I found there’s a lot of pity. Many “I don’t know how you do it” statements. Far too many “You’re much stronger than I”. And honestly, there was a lot of resentment on my part for not having a rescuer. Couldn’t people see how much I was doing and volunteer to jump in? Pity is the opposite of the high opinion I was looking for in the first place.

I now know that I did this to myself. I was out to prove how grown up and independent I was. I stubbornly refused help when I know I could have it had I just asked. I’ve been “the pleaser” my whole life. But my new mantra is DON’T DO FOR OTHERS THINGS THAT THEY’RE CAPABLE OF DOING FOR THEMSELVES. I’m not the fire department. I’m not the go-to person. If it’s going to make me resentful, I’m not going to do it. My time is just as important.

This isn’t about being mean to others. I love doing random acts of kindness! This is about me running my tail off until I collapse each day. Being busy has a lot to do with feeling as if you are earning your keep. It’s being afraid that if you aren’t doing chores = you are lazy. Check to see if rushing is just a habit of yours. You can’t control others, but you can control your energy reserves by taking care of yourself. When you are taking care of you, you then have the energy to do some amazing acts of kindness for others. You can overflow your pleasure when you are filled.

I’ve been purposely and consciously making myself sit and relax in the evenings. Very hard to do when I know there are 2.5 million things that need to get done around the house. I talk to myself, “You have the right to read a magazine”, “The Queen of England is not coming to your house”, “Those who judge you aren’t worthy of your consideration”, “What do you really WANT to do?”

So, if you come to my house, it won’t be as spit spot clean as it used to be, but I also won’t be as anxious or tired. You’ll get the best of me and I’ll be glad to have you over.
Heather

Friday, July 31, 2009

The Positives

Being Positive

“I’m not afraid of storms, for I’m learning to sail my ship.”
-Louisa May Alcott

As I was sitting in the hospital one day, as happened a lot when my daughter was younger, another mom came in and we started chatting. Her daughter has a feeding tube button, as well as needed dialysis weekly because her kidneys were dying. The sad part was that a transplant wasn’t feasible since it had been tried before and rejected. This little girl was a spit fire! Personality oozed out of her every pore. At that moment I was the most grateful mother on the planet!
The funny thing was, the other mom thought the same thing about me and my child. “At least I can hold my child and never fear of hurting her” she told me.

Perspective is a strange bed fellow! We each have our own (like opinions and ass holes, isn’t that how it goes?). Spending time in a children’s hospital will always show you a family who is going through something worse than you, and it’s humbling. On the flip side, we don’t always know we are an inspiration to others…we’re just living our daily lives the best we can. I sure am inspired and humbled by all you other moms!! It’s okay to be grateful for how lucky you are. To say “Thank God my child doesn’t have that!” (Hell, I do that in regards to some “average”, yet very bratty, kids and their overscheduled weeks.)

I think many of us are so used to working ourselves to the bone within our own special needs world that we forget to find the pleasure of life outside. We are looking back to fix the past and we miss out on the wonderful future that is ahead. What are some positives about your child’s diagnosis and your family situation? What are you grateful for in your life? What can you step back from and laugh at? Make a list (or lists) and keep it where you can see it first thing in the morning and last thing at night. You can’t change a diagnosis but you can change your perspective.

Here are just a few things on my “I’m so grateful for” kid list:
*If your daughter is in a wheelchair, you don’t have to worry about her butt cheeks hanging out or her tummy showing.
*Wheelchairs limit access to go with friends, so I’ll have to transport her to and from places and always know where she is.
*My Asperger kid likes quiet play so I can have time to make dinner.
*PT can wear my kids out so I could get lucky and get a nap in on the weekends.
*Since neither child is really sports inclined, I’m not running to practice all week and tournaments on the weekends. Saves me money and headaches!

Another positive of having SPED kids – I understand the fragileness that life is. We’ve been put in the life or death situation more than once. Time is precious and I don’t have to waste it on dumb things – I have a ready-made excuse. High maintenance friends are gone, committee memberships I felt I had to do are over, and I just send a check for school fundraisers and don’t bother doing them at all. Mask on me first, my kids second, then everything else in priority order. I also don’t have to watch the sappy movies to remind myself to be grateful for my life: I can open my kids’ doors at night and watch them sleep for that.

The rough days will come and sometimes it’s very hard to see the positives when you’re in the middle of a life melt down. That’s when you will need to find a mantra, or a few mantras, to say to yourself as a reminder of your strength, your courage, and your pleasure in life. Say it over and over until you believe it every day. Some of mine are “This too shall pass”, “I am the rock”, “Slow, calm, smooth”, “Abundant wealth”, and “Live, Love, Laugh”.

When the day is done and you survived outstandingly well (which simply means everyone is still alive) you can reward yourself with your favorite positive pleasure. Pat yourself on the back for a job well done. Give yourself all the kudos you deserve. Brag on you! Toot your own horn! Lavish in self pride. Another day is coming and you need to start it off as positive as you can.

Sending positive vibes to you,
Heather

Thursday, July 16, 2009

Anti-depressants

Anti-depressants

Today is an extra personal blog. Last week I started on anti-depressants. This was a HUGE deal for me! I don’t even take aspirin. I decided to take my mental health as serious as my body health because my relationships with myself and my family were, I felt, at the bottom of the barrel. I tried many different tactics to pull myself out of my funk, but time, money, and commitments are factors that are fixed. Shopping, alcohol, and endless hours at the gym weren’t going to help my family and sneaking in an hour at Target just wasn’t cutting it.

I tried my hardest to be “the super mom” and I’m happy to say that I failed. My expectations of myself and the expectations others have for mothers is ridiculous.

Depression doesn’t mean that you are in a ball on the floor of your closet sobbing 24/7, though it can be that. There were many moments over the years that I was very happy. But the underlying feeling of being overwhelmed was a constant low vibration within me. Two special needs kids, a husband, a job, a house, family and friends. Pleasing them all didn’t leave any room for taking care of me. And quite frankly, no one else was taking care of me either because I didn’t ask them too. When the help didn’t magically come I thought I wasn’t worthy of their consideration, and deeper I sank into the barrel.

I’ve also felt, and heard from other friends, that admitting you’re on anti-depressants means you are weak and can’t handle things. No it doesn’t. It means that there are stressors in your life that are blocking your brain chemicals and you just need to help re-wire a few things to run more smooth. Depression usually runs in families, whether or not anyone admits to it. And let’s face it, raising special needs kids means you need more help anyway. Our society, and the insistence of independence away from the village, is killing mothers. Moms are the highest ranked group of people in the world of depression, only above divorced dads. So, obviously, you are not weak, you are human. Not super human, but average.

The two medications I’m on are supposed to:
1. Help my brain shut off at night so I can sleep and
2. Even out my moods during the day.
It’s only been one week and I honestly can’t say either is working so far but that is expected. It takes at least a month for the meds to start their best work in your system. I will say that my body has felt like lead, very heavy limbs, for the first few days and I’ve been yawning all day every day but the symptoms are lessening as each day passes. In a funny way, I’ve been so “hung over” that I haven’t cared about much, so perversely the anti-anxiety drugs are working. I’m a bit slower and more easy-going. Always a way to make a silver lining!!

I share this experience with you because I want you to know that you aren’t alone. Hope is there in many different forms. There are many of us out there who can answer your questions and give you support, no matter what you are going through. I will keep you updated on my progress. Take care of the whole you!
Heather

Thursday, July 9, 2009

Better Bellies

Well, after a nice long holiday weekend, it is officially swimsuit time and I can hear the groans from many of you. Not only do you have to pack a billion things (just in case) for a 2 hour stint at the pool, but you need to fit into last year’s suit after a long winter.

Personally I judge myself on whether or not I can see my feet. If my belly is bloated so much I can’t see my toes, I know I need to do a little maintenance ASAP. The secret weapons are….drum roll…….diet and exercise. Okay, Okay, I know, not rocket science, but it’s the kind of diet and exercise that makes all the difference.

Bellies can bloat for many reasons, but two that are overlooked are Celiac Disease and Gluten Intolerance. Celiac Disease and Gluten Intolerance are both on the rise, and according to Natural Health magazine, some experts believe they’re doubling every ten years. Why? It could be from how wheat is being grown and processed. Genetically altering the crops is taking its toll on our digestive systems.

If you have any of these symptoms, you may want to talk to your doctor:
1. Frequent abdominal pain
2. Bloating
3. Bone pain
4. Constipation
5. Diarrhea
6. Fatigue
7. Low moods (even depression)
8. Muscle cramps

Getting tested isn’t a big deal, but you need to do it BEFORE you start eliminating things from your diet so you get true results. The blood test will look to see if you are making auto-antibodies (proteins made by your immune system that attack cells) to gluten. If the blood test is positive, your doctor will want to see if there is any damage that your immune system has done to your intestines. Your intestines absorb nutrients so you want them as healthy as possible.

Celiac Disease = damaged intestines
Gluten Intolerance = no damage, but body can’t break down gluten

I have been told that I have both, so I don’t know which diagnosis is right, but I do know that I need to watch what I eat. My round lower belly isn’t fun and I pay the price for eating things I know I shouldn’t….like the whole weekend over July 4th. Gluten is everywhere! Seriously look at labels for any forms of wheat, rye, barley or triticale. It’s in play-doh, lipsticks, sauces, toothpaste, and many things in boxes and cans. You’d be shocked at how many products use those ingredients as fillers. It’s as bad as high-fructose corn syrup.

But life isn’t all bad. Fruit and veggies are a big GO! I can also have rice, potatoes, corn, soy, tapioca (yeah!), nuts, and a few other grains like buckwheat, millet, and quinoa. You can find tons of stuff at www.celiac.org and www.gluten.net . I also take a probiotic just to help my digestive system get a step up. Am I good every day? NO. I’m a sucker for bread and brownies like everyone else, but I try to limit what I can.

The other thing that really helps is Pilates and Power Yoga (not meditative yoga). Both forms of exercise use your core abdominals intensely….thus moving around everything on the inside to keep it going in the right direction. With both Pilates and Yoga, you must breathe deep and be precise. Controlled movements are key. You will sweat if you are doing it right, and the muscle gain will be tremendous. Cardio has its benefits, but it’s important to give your mind and core some attention as well. Plus, neither of these really needs any equipment when you are starting out.

You can take a class at your community center, check out a book, or rent a video for home. I happen to really like the Windsor Pilates set of videos, but there are many out there to choose from. The three best reasons to take a class are because the instructor will push you farther than you will yourself, you’re more obligated to go since you paid for it, and people are expecting you to show up. When doing workouts at home there is always something that comes up you could be doing instead. But, I completely understand the time and money factors of taking a class, so books and videos are still great opportunities for you to increase your health.

Make this your summer! You are fabulous, beautiful, smart and sexy. You will have a body and mind at the top of your game because you deserve it first, and your family deserves it second. You just can’t put a price on health and happiness. Go for it all!!
Heather

Thursday, June 25, 2009

Everyday FUN

6-25-09
FUN!

Recently we took the children to see “Night at the Museum, Battle of the Smithsonian”. It was a very good movie, I laughed as much as the kids, but I think the real story line of this kid’s movie was meant for the parents. The plot: Larry Daley enjoyed his job at the museum, but when a better money offer came along he naturally took it as any parent would. Amelia Earhart finally tells him that life is about going on adventures and having fun. It’s a hard concept for Larry to swallow.

I walked away from that movie really thinking about my life. Am I having fun? Or am I just drudging along? Have I taken my responsibilities too far? Why do I expect so much from myself as a mother and wife? What exactly am I teaching my children (since we all know they learn from what we do and not what we say)?

Just to see if it was only me in this state, I asked some of my friends what fun they (not their kids or their family, but they specifically as women) had recently. Most of them didn’t have an answer and frankly didn’t understand the question. Blank looks all the way around. But when I asked, “What fun did you have before you were married or had kids?” the smiles broke out and the stories started rolling off their tongues. When I asked why there’s such a huge discrepancy they replied, “Well, I’m a mom.” Or “I’m married now.” As if those answers should just explain everything and I was stupid for even asking.

Do you think there is a connection to our country’s high divorce rate, depression among mothers, and the answers I received to my questions? Hell yes!!! Today’s pressure felt by women to keep a beautiful home, prepare healthy meals, spend quality time with our children, bring home a paycheck, manage our careers, emotionally support and encourage our husbands to be all they can be, deliver great and regular sex, and if your children have special needs you can add in 180 thousand more items to your checklist of tasks and worries, is astronomical. Mama Gena (Regena Thomashauer) is right when she says “The horror is that we think we can do it all.”

Well, the responsibilities are not going to end, but the fun shouldn’t either. I can hear you screaming “And when exactly am I supposed to squeeze that into my over-packed schedule?” Here’s the ugly truth: We made our prison, so we are responsible for tearing it down. You are the only one who controls your life. Go against the norm and ask for help!

We need to start having some fun every single day. We need a village to rely on. We need a community of friends to brag how great we are to, to celebrate what is good in our lives, to go out with, to help us see the potential and positive in the situations that arise, to trade services with. We need to make ourselves the top priority without us wearing the “selfish” label like a scarlet letter. We need to worship ourselves for how fabulous we are!

Fun is serious stuff. Let’s get down to business. Here are 4 fun projects for the week:
1. Start gathering your friends. They won’t all be living next door to you, but I’m guessing you have a phone, a computer, or a way to write a letter on paper (remember that forgotten art?). Important note: Not everyone you know gets to be in your cherished group. There will be some who are just negative souls (glass is always ½ empty) or some who are jealous that you are having so much fun. Our culture doesn’t think too highly of truly happy women so be courageous and only keep those in your group that are truly supportive.
2. Pursue pleasure. If it’s not fun don’t do it. If it has to be done then make a game of it. Stop solving problems. Use your wonderful gift of creativity and communication within your group of friends to find the fun…solutions will arise when your mind is relaxed.
3. Give up your right to be angry. So what if you are right, is that making you feel better? Being right just means you fail to see the situation from any other point of view. Keeping your anger simmering on the burner will scorch and kill your inner soul. That’s quite a price to pay to be self-righteous.
4. Look at yourself in the mirror each day and tell yourself how much you love you. Find specific things you can complement yourself on. I personally love my feet. I think they are beautiful so I make sure they are decorated with pretty polish. Tell yourself aloud how sexy you are. Do something out of your usual routine that brightens your look – wear a bright shirt, dye your hair, wear heels, throw on some lingerie. Let your sexiness ooze out of you! And by golly, SMILE!!

I understand that it will be very hard for many of us to do those 4 tasks. We are so ingrained to downplay and sacrifice ourselves that we don’t even recognize it’s being done. We live with a constant low vibration of depression that fun will have to be consciously thought of, scheduled, and acted upon until we get used to it again. It’s going to take practice. And some days will be harder. But I know you can do it! You are smart, sexy, and extremely capable. The whole world is yours if you step out of your box. Amelia is right that life is an adventure and we should be having fun.

Here’s to your pleasure week!!!
Heather

If you want to know more about Regena Thomashauer “Mama Gena” and her school of Womanly Arts in NYC, you can look at her website www.mamagenas.com. Her classes are for women to find the pleasure in themselves and she also has a class “Giving it Up to Men” for the men in your life. She has books you can buy or check out from the library if you can’t make it up to New York.

Thursday, June 18, 2009

Listening

6-16-09
Listening
I have found that one of the hardest things for me to do is listen. Listen to myself. Listen to others. I hear loads of things, but listening requires full attention, and being a wife and mother to 2 special needs children, my ear is rarely focused in one spot. I am constantly multi-tasking, as all mothers do, and sometimes get bitterly jealous of men who can be simply solely focused on one task. It’s not fair, but true.
We are no longer living in a simple family community world. The TV, internet, and easy air travel give us so many more options that the number of decisions and opinions flooding us is overwhelming. Because we have so many more possibilities, we feel that we need to have more direction, more purpose, and more meaning to our lives. We want adventure and peace at the same time because it’s available and the marketing experts are getting very good at their jobs of influencing our society’s opinions of what life “should” be like. Most of our prejudices and values are absorbed from our culture. Why are we listening to them? Why do we doubt our own thoughts? Why do we follow?
Honestly, because I’m tired and it’s easier to follow. Listening to myself takes a lot of energy when I have to be the one to then do the action, follow through, and be responsible. And, listening to our culture helps to find jobs and friends within my community. So is there a fine balance between listening to our culture and my own thoughts? This is my struggle and I know it’s a hard burden many moms like me face each day.
The consequences if we don’t face it well is that depression sets in, so that who we are listening to becomes a life or death situation each day. We know main-stream society doesn’t fit our special needs life, but we doubt ourselves and worry about our children and marriages constantly. Can a depressed mom listen and trust herself?
Ariel and Shya Kane say in their book Working on Yourself Doesn’t Work, that if you pay attention, you will see that there are many times when you have an internal commentary on what is being said rather than just listening. I call this “the Shoulds”. My soul is telling me what is best for myself, and while I’m listening to it, my brain is rapidly talking over and above of what I should be doing, so I stop listening to heart.
This just isn’t working. When listening to others, you need to be in the moment, hearing their words for what they are, not agreeing or disagreeing with them, just taking in their point of view. Same rules apply for listening to yourself. UGH! Can this get any harder? I have a hard time being able brush my teeth or to sleep through the night, let alone find the quite time to listen to my own thoughts and feelings. But it’s necessary. And I know that now. Learning to listen the hard way isn’t fun.
We all have a child in us who wants to be right and wants things our way, stubbornly not listening. Even if you are correct about another being wrong, something alive in you dies. Listening means we need to observe without judgment or comparison. Feel your feelings, listen to your bodies for desires and health, be in the moment for others and step into their side. The more you are willing to be here and let go of your history and your story, the more life can unfold in this moment.
Heather

Thursday, June 11, 2009

The Female Brain

The Female Brain
My notes from reading “The Female Brain” by Louann Brizendine, MD

Here are a few facts about the difference in female and male brains. Yes, there is a huge difference! I know it’s such a shock to everyone.
1. Men and women have the same number of brain cells but men’s brains are larger, so there is more room.
2. Women have 2 ½ times more brain cells devoted to communication and social orientation. Men have 2 ½ times more cells devoted to sexual drive and aggression. To me this answers many problems women and men have in relationships. Stop asking each other to provide what you need if they don’t have the brain capacity to do so. He can’t read your clues. It takes him longer to process emotions so typically he just skips it. It’s just not there, so be it, deal with it. And there is nothing wrong with you if your sex drive lags after kids. He needs to get that flat out.
3. Reading emotions is equal to reading reality. Baby girls look for every reaction (look, touch, tone) to see whether they are loved or rejected. Imagine if mom is depressed or a little too Botox’d = the lack of facial expressions confuses girls and they naturally turn to someone more expressive.
4. Women have emotional memories that men do not. We use both sides of our brain to respond to emotional experiences where men only use one side = nine of our brain areas light up to his only two. This can explain why men’s worlds are so black and white and concrete. They can’t read the rest of it as well as women can.
5. Girls develop confidence when you intently listen to them. Don’t break eye contact; don’t let your mind wander. Yes, this takes great amounts of patience for you, but you are helping her develop her sense of a successful self.
6. Girls inherit a “nervous system environment” that mimics her mother’s and becomes her view of reality. A nervous mom = a nervous girl, calm mom = calm girl. Boys are not as affected by mom’s nervous system as girls. This stress factor is absorbed by the cellular micro circuitry at the neurological level.
7. Boys don’t care if they cause conflict. Play is not about relationships, but about the game/toy, social rank, power, and territory. Girls take turns 20 times more often. Their play is about nurturing. They use language to get consensus without giving orders (aka “Let’s do this…..”).
8. If you want your daughter to be strong, don’t let her sense your fear or disapproval in your facial expression or tone of voice when she is trying something new, courageous, or daring.
9. Connecting through talking activates the pleasure centers in a female brain. Sharing secrets that have romantic or sexual implications activates those centers even more. It’s a major dopamine and oxytocin rush – the biggest, fattest neurochemical reward outside of an orgasm. This is the pleasure of bonding, even with other females.
10. The male brain uses mostly vasopressin for social bonding and parenting, whereas the female brain uses oxytocin and estrogen. Males need to be touched 2-3 times more frequently than females to maintain dopamine levels. Women can get their oxytocin rush from bonding with their kids and other females.

Ladies, you need to know your monthly cycle! Know when and how to make decisions. Get your serotonin, estrogen, and progesterone checked regularly. These chemicals affect your whole life!

There are so many more facts that fill the pages of this book! It really helps explain those frustrating and annoying things the other sex is doing/not doing. It also helps us to see that each side is not right or wrong, just programmed differently with each needing their own special desires fulfilled in a certain way to function happily. I think this is a great book for men and women to read. Knowledge is power.

Until next week!
Heather

Friday, June 5, 2009

Vacation Everyday

Dream Factory – LegoLand!
We just returned from a fabulous trip to LegoLand in Carlsbad, CA (half way between LA and San Diego). This trip was provided to us by The Dream Factory. I cannot tell you how wonderful that organization is – there just aren’t enough great words to describe it!!! Things like this really make me appreciate the volunteers and companies that donate their time and money to help kids who really have a rough life.

And I will easily admit that the vacation was just as good for me as it was for my children. I didn’t have to worry about money, chores, issues at work, cleaning, cooking, laundry, school, or being the “mean cop”. I could say “yes” to all kinds of treats I normally wouldn’t. I could play all day! Of course I didn’t jump off the responsible end completely. Schedules still needed to be attended to, and food somewhat watched (who wants constipated kids on vacation?) but the rules felt relaxed even if they were still mostly followed.

What was most different was my attitude. I was mentally and emotionally on vacation. And I’m wondering now why can’t I do a little of that every day? I can hear you wryly saying “somebody has to be in charge and responsible” and I couldn’t agree more, but I was in charge while on vacation and yet I enjoyed every minute.

There has to be ways to incorporate the buoyant feeling of a holiday retreat into daily living! This will be the focus of my blogs over the summer.
Summer is a time of longer days and fresh produce. For me it’s a time to procrastinate – which is VERY unlike me – in lieu of running around like a deranged lunatic before the sun sets. I like to take long walks with the kids in the evenings. Summer is a great time to refresh ourselves from the inside out. To do that you may need a break from your family and sending the tykes to camp might be a perfect jumpstart solution.

Speaking of camps…as if you needed any more motivation….here is a little something just for you that I found in southern California. Since you are the best of the best women walking the planet you deserve a camp you can call your own!! Camp Get Away is a resort for ladies only! You can participate in the scheduled activities or not; your call as the mood strikes. You can go alone or take some friends. You know those pictures of the kids you keep taking and saying, “One of these days I’ll put them in a book”, you can here. Hiking, yoga, facials and massages, karaoke, or curling up in front of the fireplace with a book. You make it YOUR retreat. www.campgetaway.com

Whether you decide to book your Camp Get Away vacation now, or are inspired to make your own get-away vacation to another destination, that’s what Martyrdom Sucks is all about! Realizing who you are, accepting the whole you, and promoting you as the greatest woman you can be! In order to do that you need rest and relaxation, you need fun and laughter, along with the responsibilities of the title Mom.
If you know of any other “camps” or vacations for ladies only around our great nation, let me know! I’d love to pass the word on.
Heather

Wednesday, May 27, 2009

Summer Camp

Here’s a great way for you to have some much needed alone adult time …. CAMP!

You want to send your child to camp so they have the opportunity to be with other kids, learn how to build relationships, and develop the skills to problem solve without a doctor, teacher, or their parent around (you know = the cocoon). It builds their confidence and independence while getting them some physical, mental, and emotional exercise.

The Americans with Disabilities Act (ADA) requires that all camps make reasonable accommodations so kids with special needs can attend. This being said, there are many types of camps your child can participate in. Some camps are mainstreamed (or inclusionary) so they are filled with mostly “average” kids and will need to adapt their activities for your child. Some camps are made specifically for special needs children, either by taking many different diagnoses or by focusing on specific issues (hearing and speech, sight, epilepsy, learning or behavioral, chronic illnesses, etc…). You may also see camps just for girls or just for boys.

Camps fall into many different categories. There are non-profits, for-profits, religious, private, national organizations, day camps, weekend camps, and sleepovers (for a week, month, or all summer). You will need to make a list of goals, health priorities, and outside considerations that will limit which camps are right for you and your child.
Be sure to involve your child in this decision! Ask them what they are looking for in a camp.

When researching for camps, check out the American Camp Association (ACA) at www.acacamps.org. Under Quick Links click on “Find a Camp”, then “Advance Search”, to see comparables like cost, camper’s ages, region, activities, length of stay, etc… I would speak to the camp directors about your child and any accommodations that would need to be made, as well as speaking to other parents whose children have attended the camp. Your child may want to speak to the other campers, who may have a different opinion than their parents on how great the camp really is. If you have a question, never hesitate to ask the staff or other parents!!

If cost is an issue, look into applying for scholarships to help pay for the camp admission. You can ask charities and fraternal organizations who sponsor special needs camps. There may even be some state funds available.

Can’t highly recommend camps more! It’s such a fabulous way to give both you and your child a break from the everyday doldrums.

Thursday, May 21, 2009

School Tips

School Tips
This week is a blunt truth blog. I want you to have the real buffet of information, not the imitation politically correct version. I’m warning you now the dose of reality is long and can be hard to swallow, but you’re a big girl and I know you’d rather have the truth to conquer than be stuck in sappy quicksand.

The number one fact you must understand is that school districts have budgets just like you and me. And there is always more needs, kids, and school days than there is money. Right now many districts are doing some major shuffling to keep as many services as they can. You may have to switch schools and teachers. It’s not fun for anyone involved, including the school staff.

So far we have covered IEP’s, 504’s, and LRE’s. For each of these three, you and the staff at the school will determine TOGETHER what is best for your child. You have to understand that there are limits to what schools can do. There are also practical constraints. If your child is in a wheelchair, obviously they will need extra time to get to and from class. This does not mean that the teacher must hold up the class to wait for your child. It means your kid will need to work out a way to get the info they missed and not do it by interrupting the rest of the class. There are 29 other students in the class who deserve an education too and your child is just one of many. I know they are special to you, but they are not more important, above all others, to anyone else. A teacher’s job is to educate ALL of the kids. Not to cater just to yours. That seems severe, and a slap in your face, because you love your child and they take up so much of your time and energy. Your kid IS important to their teacher, just not more important than Johnny and Suzie, and certainly no less important. If you have other children besides your SPED child, you should easily understand this reasoning. All kids are special, some just need more services for everyday living.

There is a huge difference between letting your child fail in order to learn how to get back up and not giving your child the tools to succeed. The school district is required to provide adequate tools for your child but they can’t make your child use the tools or to bend the rules so your child gets an “A”. This is a hard concept for many parents, especially those in the upper grades. Schools aren’t in the “feel good” business, that’s not in the job description. They want your child to love learning, like school enough to stay, and graduate with real skills, but they aren’t supposed to make the world a rainbow with flowers and smiley faces in the trees.

Even though your child has a disability, you can’t do your kid’s homework for them so they get a good grade, just to make them feel better (or you feel better). And you can’t ask for an extra week to complete a project they could easily get done in one day. If you do that, you are setting them up for big future failures! The real world doesn’t work that way. Their future boss isn’t going to care how big of a bubble you put them in – they expect your child to put in their time and effort to earn the paycheck. So what if they have to work harder than other kids? All people have difficulties to work past (and on the flip side, all people of some talents). The IEP will help monitor how much work they are doing to prove they have learned the lesson properly. Maybe they only have to do 10 math problems instead of 20. It’s the same work, just modified. The key word is MODIFICATION. Not deletion, or excuses, but modifying the lesson so the child can receive the same education as the other kids.

And let’s be real here. Your kid can probably do more than they are showing you. Teachers are trained to pull information out of students. They don’t see your kid as “your little pudding pop”. Remember, your job is to help them stand on their own, not to carry them forever. This task is easier for the teacher who is on the outside and has seen many other students.
My recommendation is to make sure you are assigned to a seasoned teacher ….someone who isn’t on their first or second year. New teachers are full of life and ideas, but since they don’t have a routine down yet, they are making frequent changes in the school day routine to see what works for them and that’s not good for SPED kids. I’m not doubting their abilities as teachers, I’m just being practical. Also, teachers, like any other profession, can get burned out. You can “interview” the teachers if you want, but just know that end-of-year and beginning-of-year are not the best of times for you to attempt that. Try for sometime in February.

Teaching styles are different for every teacher, so in the interview ask questions about their style. Are they strict about rules, are they laid back, are they stronger in one subject, what are their plans for field trips, what would they do if a child did ______? Now, hopefully, you’ll get an honest teacher who isn’t just smiling and telling you what you want to hear. Example: “I love children and will make all kinds of accommodations” when they really want to say “Look, I’m tired and want a year of easy kids.” You, of all people, should understand about needing a break. It’s nothing personal against your child. Just keep interviewing and you’ll find a teacher who is up for the challenge. You can then take your request for a specific teacher to the IEP meeting.

*Tip: don’t ask the principal about a teacher. #1 – the principal isn’t in the classroom everyday so doesn’t know exact details, and #2 – a principal’s job is half public relations so you’ll tend to get more “of course we’ll accommodate” when they themselves don’t have to be the teacher actually making it happen. Always start with the direct teachers first, then move to the principal if you don’t feel you are making headway with the teaching staff.

That said, you know your child best and the staff needs to know what tricks work best with your child. Make a list and bring it to the meetings. If he or she needs some quiet time every two hours, then say that. Most likely, your school can provide a space within a classroom or library for some quiet time. If your kiddo does better with a snack in the afternoon, you may have to provide the snack, but they can find a place and time to give it. If he or she needs a special bus for transportation to and from home or daycare, you need to be upfront about it. Does your kid have a special routine at home? If so, let everyone know it and they can try to mirror some of it at school, while you change your home routine to fit the school’s normal activities (eat at same time, quiet time, etc….). Everyone involved is going to have to COMPROMISE, including your child.

If your child is home with you, you need to start prepping for this in the summer! Find out who the teacher is and what their schedule is like. (By May the school already has assigned your child to a teacher for next year, but they might not tell you that in case something changes over the summer.) You can adapt your home schedule over the summer. This will make the beginning of the year so much easier!!! Each grade level and teacher have different lunch times, recess, etc… so sliding your lunch time up or back gradually over the summer will put your child way ahead in August.
Request (politely demand) that your child can go into the school to see their classroom and meet their new teacher BEFORE Back to School Night. That night is crazy! If you have a good teacher, they’ll meet you at the school early. If they won’t, you may want to question why. They could be in a continuing education class or a meeting for the district, or they may just be one of those teachers you don’t want.

If your child has a mental, emotional or social disability I suggest asking for a Triage each morning with a staff member. During this morning meeting, your child will find out if they have a substitute teacher, if the day will look different (fire drill), organize the papers in their backpacks, and see how their mood is. If they are in a funk mood, there is no point in continuing onto class and getting in trouble. The triage can halt the negative pattern so they can be successful the rest of the day. It could be any teacher in the building, but the SPED teacher would be ideal. He or she can then relate your child’s moods to the rest of the team and do extra checks on your kid if necessary that day.

If you haven’t already, you may want to consider getting some of the equipment that the therapists use for your home. All therapist have catalogs you can look at. One place for that is Early Childhood Manufactures Direct at www.ECMD.com. Even if you don’t order from them, they have great ideas for all ages for storage, toys, and helpful tools you can use to adapt your house that may be found at your local superstore or that you can make. Of course, there are other manufactures out there, so shop around.

A good suggestion one mom had was to get an advocate if you don’t feel your concerns are being taken seriously. There are organizations that help parents weed through the IEP process. Because you want to be able to have your advocate in the meetings with you, you will need to find one close to your hometown. If that isn’t possible, many will give you advice over the distance by phone or document. Some services are free, some charge, it all depends. A good place to find out more on advocacy is SNAP = Special Needs Advocate for Parents.

Don’t be surprised if your kids’ (average and SPED) grades drop in Middle and Jr. High School. This time is double tough! They are not babies, but not adults, no way of transportation, no job or money, yet they are expected to act like adults without the adult rewards (rewards as they see them. I don’t see a mortgage as a reward some days). Add all of these feelings to their disability and the usual social stigmas of raging hormones. YIKES!!! Grades are one of the few things these kids can control and they may let them slip to see the consequences. It doesn’t necessarily mean they aren’t learning. On the contrary, they are learning a lot about themselves (and probably some about the school work too).

If the pressure of school is too much, and many things are dropping besides grades, watch for signs of depression! Look for self mutilation, sleeping patterns changing, not taking their meds…. All are red flags of them trying to regain some sort of control. Control is a basic human emotional need. We all need to know the “how’s and why’s” in our world and there aren’t many answers when it comes to “Why me and this stupid disability?” Your kid doesn’t have enough maturity or life experiences to handle everything all at once. Keep the therapist’s phone number handy just in case (yours and theirs).

Each school year brings new changes to the whole family. If you are expecting the disruption you can handle it with better ease. Know that behaviors will erupt and will soon pass once the new routine becomes more comfortable. Know that your anxiety is felt by your kids in low vibrations so prepare your inner self for calm. You are a great woman! You now have more knowledge and power. Take it and run!
And if you are just at your wits end, next week we are talking about Summer Camps!
Heather