Sunday, December 26, 2010

Yes Noah There is a Santa Claus

It is easier to dismiss the idea of magic, than it is to believe in something you don’t see or haven’t experienced, when you are an adult. Noah was questioning whether Santa was real this year, I don't know if it was because he had some difficulty more recently, or because I told him christmas was going to be light.

When you are child, believing in magic of course is much easier, and not believing it in would feel foreign and wrong. Something happens to us along the way which flips these two ideas-the one which believes with the one marked with cynicism.

Life happens to us, as we live we lose. We lose people who mean the world to us, we lose jobs, pets, friends, and sometimes we lose our homes, our sanity and even our way. The loss of things that mean more than a misplaced toy, slowly affects our inner-workings. We still believe, but our prayers go unanswered much more often than they did before.

At some point we get to a cross roads where we can take one path or another. We can choose to believe in good, in magic and in life. Or we can choose to dismiss those things, value them as unimportant and embrace bitterness. My husband took one road, and I have been on the one which believes in magic, even though countless things have happened to me which should kill that. However, there has been magic too, like blowing a tire on 95 in the middle of the night and being picked up by nice people who drive you home, and like what happened to us this Christmas.

Most of us Have Been Dealt a Bad Hand from One Time or Another.

Sometimes the hand is temporary, and the next round is better. We only wind up a bit behind, maybe we still break even at the end of the game, or only take a minor loss. And with that loss, we at least gain some wisdom.

Other times the hand we are dealt is not the type we can recover from so easily. Not without the help of others, and not without a little magic.

The idea of Santa Claus when you are a child fills you with hope, excitement and can make you a bit nervous. Santa is judging you after all, but it didn’t feel harsh, cruel or in the ways people judge each other later in life. Santa still accepted that even if you were flawed, you were still worthy, and loved for trying.

As you grow older you then can find yourself feeling as if magic is dead, it never existed, and it was just a lie. Cynicism takes hold, yet somewhere within me, I refuse to accept it.

We had some bad luck about 6 years ago, just before Noah was diagnosed. I will give what I call the Reader’s Digest version.

We are a good example of people who did things right, made good choices. We saved money to buy the current home we are living in, and bought something a bit smaller to not have to take on a huge mortgage when a smaller house would be just fine for awhile. While selling our former home laws changes regarding underground oil storage tanks, and it took some 2 years to get the house sold. During this time we had 2 sets of taxes, mortgage payments, water bills and though we lived conservatively, we could not afford 2 homes. And it wasn’t as if we could sell the new one and move back into the old, it had an “environmental problem” now, and was deemed uninhabitable. So there was inevitable debt, plus testing and clean up costs for the soil. This wound up costing close to just over 75,000 dollars. Then Noah was diagnosed with autism, just after the house was sold. The costs of Autism ran up another 40,000 over the past five years.

We still live frugally; we do all the things suggested to save money. No landline phone, cheap cable, thrifty shopping, and no extras. We do not buy new coats or shoes every year. We do not go shopping for fun stuff; we do not go out to eat. And for seven years, never took a vacation. During Noah’s treatments it was not possible for me to go back to work fulltime, it still isn’t because there is no one who can handle him in between. When he was getting therapy it had to be done here, for 40 hours a week, with multiple therapists. But I digress, I wrote all about that in a book.

We both work as much as possible, but it isn’t enough to keep up with the $1,000 of debt bills we have in addition to regular bills each month, but it helps. If not for our frugality, things would be worse and we would have lost our home years ago. So even though it is this way, I am grateful it isn’t any worse, and I have always believed deep down, since we didn’t ask for or create any of this. One day, the universe will balance, and it will be ok. One day, there will be such prosperity it will give new meaning to our suffrage. I have always cared about others, but it will force me to never forget…when I am wicked famous :)

The economy has been a problem for many people the past few years, at first for us it wasn’t that much different. We were already living the way other people now had to. Of course with no raise from my husband’s job for over 2 years, but higher costs for everything, healthcare, tolls, taxes ect. We now had less money, for an already stretched out budget. We skip meals, we are sometimes cold, but I have also found that you can adapt to a lower thermostat and make it a personal goal to push it a bit lower each year. Christmas has always been small for us; we give to others, but not ourselves.

A Child Shivers in the Cold, Let us Bring him Silver and Gold.

This year, a miracle happened. I decided to look into getting food from our town’s food bank. Hoping this will help shave something off of the food bill. I figured there wouldn’t be too much for Noah’s diet and particular aversions. But something is better than nothing. Somehow this outreach for help led to help.

A former school mate, and now current council member of our town decided to do something about it. His wife and he did a toy drive, they collected gift cards, cash, boxes of gluten free/dairy free food and reached out to two members of the Maple Shade Business association who are Santa and Mrs. Claus ever year.

These two people have been adopting a local family every year for the past 12 or 13 years, it is their gift to each other. They deliver gifts, and bring food. This year, it was our family they shared Christmas morning with. This also led to another old friend donating a tree to us, and some elves who know Noah’s occupational therapist donating some food gift cards. Another writer from one of the websites I write for is sending a $100 to us after I mentioned part of this story in our forum, not because I was asking for help. But because I was remarking how wonderful people can be, and they are as good as they are nasty.

Noah woke up earlier than expected on Christmas morning as children can do, and found nothing new under the tree. “My sock is empty.” he said, and noticed Santa’s coconut milk and cookies were still uneaten. He didn’t cry, or get upset-though I think the Farmville gift card in his stocking from me took the sting out. He just said he would go on Farmville and open his presents!

About twenty minutes later, Santa and Mrs. Claus knocked on the front door, and with them brought cookies and gluten free dairy free donuts for Noah, as well as two huge contractor bags of wrapped presents.

“ Wow Santa you were busy at your workshop”

Noah was extremely happy and excited to tear through gift after gift, even was excited to open up box which held an Eagles sweatshirt and wind breaker.

“Oo a sweat shirt!”

They had a big wheel! Something we wanted to get for him for some time. Legos, playdough, games. Noah is a big toystory fan, and someone even got him the Andy's toys gift pack, I couldn't afford to buy this year because I missed the black friday sale at Target. I cried when he opened these gifts.
They even had a few gifts for my husband and I. His heart did indeed grow "three times this day." My favorite was an ornament of a stocking with one small powerful word on it. Believe.

On Christmas Eve, our new best friend dropped off a ham, card and small box to us to be opened after Noah went to bed. We opened this, and it was full of gift cards. So many we had to keep reaching in the box and more and more came out. What we received from the good people of Maple Shade was more than what was in the many boxes. Hope, love and belief were the best presents of all. I am always overjoyed when I see people helping people, it gets me every time. I just never knew it would happen to me one day.

Gift cards and presents = about 60 items
money, gift cards, food, presents for Noah given = about $3,000
Hope, faith restored and love= Priceless

It isn't as if this will wipe away all of the debt by magic- it certainly helps, and this Christmas was the best ever. It absolutely has made me believe this is the beginning to it getting better. All of this generosity warmed us so much inside; I didn't feel cold in the 62 degree house. And now some extra money means I can crank that heater up to a steamy 65 least for the next few days. There is enough food, and food gift cards to last us until February at least.

I know Santa is real, he was in my living room! Twice, but only one of them had a beard. Santa is as real as love is real, and magic is real, for it took a bit of it and some luck for this to happen. When people come together like this, it is amazing. I have loved Maple Shade my whole life, people often joke about how you can't leave it, if you do, you come back. This is one of the reasons why. Local businesses helped too, they donated, and one night this week Joe and I will enjoy a nice dinner out, thanks to Charlie Browns.

Thank you good people of Maple Shade and elsewehere you helped our family this magical Christmas.

Yes, Noah there is a Santa Claus.

Monday, December 20, 2010

Ready, Set, Holidays!

The holiday season has begun. Haul out the headache medicine, do the plastic shuffle and try to not go insane. You will need your mind when it is all over. Personally I love the holidays. I love the lights, the music, the movies, the special foods! My favorite aspect though is being able to laugh and exchange ideas and just have fun with friends. I have been fortunate where I have had some wonderful memories with terrific people over the years.

From Halloween through New Years there are so many different tastes, sights and smells to enjoy. Parties or activities to attend or tend to, and people to share your time with. It is a season of good stress, but stress all the same. Here are a few tips I use, which helps me look forward to the holidays every year.

My Top Holiday Survival Tools.

Be Prepared. Wrapping paper, check, Gift tags, check. Tape, check. Scissors??? Where the heck are the scissors! I discovered after many misplacements of my scissors to just buy an extra pair and keep them with all the other gift wrapping supplies. Try to get these types of items at the end of the season, pack them all together-maybe in a red and green tub, so it's all there for you. Stock up on batteries, and don't forget the sensory tools for your special child who will sense every bit of your stress.

The House to Yourself. You need to be able to have the house to yourself for a few hours, a couple of times during the holiday season. Not only to get things done, but to decompress. Send the kids (and maybe even the husband) off to the grandparents, your sisters, your brother, best friend’s house …somewhere they will have fun for a few hours. This also makes a great gift.

A Money Plan. No one wants to go into debt. But you do want to have funds to buy extra food, and even making gifts costs money. The best scenario is to save money-even if it is your extra change, in a jar or Christmas club account throughout the year so you have extra cash. There are also pay-to-read email companies, shopping websites where you earn points or money for reading their ads, and shopping on their site. You can save your earnings all year and cash them out in November as money or gift cards. Spending just 30 minutes to an hour a week on this can add up to an extra 200.00 in your pocket at the end of the year.

Credit for credit, not just using it as a convenience and paying it off in the month is fine if you have a plan. If you shop well, you will get some amazing deals, and if it means having a holiday over no holiday just factor in your comfort zone on interest. I normally match my savings as long as I can pay it back in 3 months. This yields two months of interest, which sometimes only adds up to an extra 40 dollars or so, with great deals-I am still a head.

Wine and Whining. You need to vent. Let it out. Call your best friend, swap horror stories and let it go. Wine is also a welcome addition to the end of your day. One glass of wine not only helps you relax, it gives you antioxidants and is good for your blood. Several glasses of wine will just give you a headache and unnecessary calories, so if you can practice moderation then add a bottle to your shopping list.

Christmas Music and Movies. When the “shitter is full”. Nothing works better than watching the Griswold’s with their Christmas adventures in Christmas Vacation. Watching Christmas movies while wrapping or listening to music- or if you are Noah, both; adds that holiday feeling and some humor.

Thursday, December 16, 2010

Think you Can Cure your Child’s Autism? Sure Why Not. - Newark Autism & Parenting |

Think you Can Cure your Child’s Autism? Sure Why Not. - Newark Autism & Parenting

The crashes worked!!

I am pleased to report that doing crashes and moving shower time has helped with the anxiety and wind-down again. So on the shopping list is lavender airwick refills, lavender soap and lotion, and foam soap. All of these work for calming anxiety in Noah.

Noah is awake longer than I would like, because I would like to have a normal bedtime. However, I suppose having to stay up a bit later and watch some late night TV isn’t the worst thing in the world. (That is being smacked and screamed at by the autism-monster). If only I could train my body to make the morning adjustment and sleep later, but know I wake up between 5:30-6:15 every day.

Ah..a sigh of relief…for now.

One thing I can say for certain, Noah when not the autism-monster, is the most polite and obedient child. Because of that, it becomes obvious when he is not in control, he is just not himself. Behavior is always a symptom of something, the test is finding out what it is.

Wednesday, December 15, 2010

No Rest for the Wicked

It was ten days before Christmas and all through the house all of the creatures were stirring because Noah was restless again.

Noah has had sleep issues on and off for…well since birth. We did get it under-control this time last year after taking melatonin for a few months and being fortunate enough to take our first vacation. He was staying awake until midnight or later most nights, but once we started the melatonin he was going to sleep by 10 most nights. Since the clocks went back, it’s been a growing battle. Now the mornings are back to the joyous times of the past where he battles me about going to school, or wants me to build him a time machine.

I get the time machine request. He isn’t the only person I know who wishes to have more time, or wants to go back in time to make changes. Perhaps if he listened to me the evening before and went to sleep when requested, he would have woken at the normal time. But it isn’t all his fault. His body is wound up and restless. I get it since I had restless leg syndrome during my pregnancy-which is this creepy feeling in your legs where they want to run but are too tired to do so. Except it’s not just his legs, it is probably his whole body.

I have considered doing the melatonin again, but I know more occupational therapy is a better fit. Unfortunately his current OT can only work with him in school, and though she is practically magical, she is very pregnant and can’t toss him around like she normally does. I have no doubt she does the most she can with him. I have done occupational therapy with him over the years; however I am not as magical in that way. I also have limited time and energy because of necessity of work, which occupies just about every Noah-free-minute I have.

It is an annoying circle. Insurance doesn’t cover autism therapies, so you have to rely on the school or pay for it yourself. But to pay for it means you need more money. But if you already don’t have enough you need more work to pay for it. Yet there are only so many hours in the day, and if you burn yourself out trying to make the money. Then what is the point if you’re dead before your time or now in need of therapy yourself?
                                                 Ah Summer...and Beach Success!

Regardless of the trials, I know the only thing I can do is keep moving forward. Staying positive is all you have sometimes, and being persistent is more important to finding success then most other things in this world. You have to figure for everyone who succeeds, someone else had to fail. This is why I keep going, one day it will be our turn, and we will be the ones who are fortunate and successful and it will be our jobs to help those who aren’t as fortunate yet.

But for now, I suppose I will give him a few more crashes and tickles, and some melatonin.

When Noah is restless he likes to get into things, line them up and crumble playdough...or paint the dogs, floors and what-not with glitter glue.

Saturday, December 4, 2010

Where Does the Time Go?

Writing in my blog hasn’t occurred much recently at all. All of my time for writing has been spent on making money due to the necessity of having it for those pesky things like the electric bill and groceries. Still, the blog is more enjoyable, and like many writers, I hope it will one day bring in some funds so I can justify writing in it. Or I hope to at least win the lottery so I can write more.

I am a HUGE believer in doing what you love, following your natural talents and abilities and not selling yourself out or short. I live this and I am hopeful one day I will also reap the financial benefits, or at least make things even from some bad luck from the past.  I am grateful I am determined, unshakable, and keep persevering despite the length of this journey.

I believe a person who has interests that drive them-has to do this, because there is no real choice if they want to be successful and fulfilled.  If you don’t have many interests and just wish to make money to survive this is something else, life isn’t just work. But I believe most people have abilities and gifts they should share as opposed to squander.  A career takes up most of a person’s time, where a job can vary.

Time is a valuable resource in which we cannot replenish or buy, no matter what we do; it just has to be spent wisely. So here's to spending my time as wise as possible and working smarter, not harder. I need to divide some of my time for this blog and other non-income generating things which can one day lead to more income. Perhaps 25 percent of my allotted time is a fair amount.
I also have to spend more time promoting my book until I get an agent who will do that for me. So here is a link to my fan page on Facebook.

Tuesday, September 28, 2010

Don’t tell me the TRUTH!!!

Yes, truth is in caps to note yelling. This is one of my son’s favorite statements when he does not want to hear what I am telling him, be it going over the consequences for some less-than kosher actions, or explaining why something is dangerous or unfavorable. No you can’t just download anything off of the internet, because of viruses and spyware.

Noah is eight, and has autism so I expect these statements and misunderstandings. It is the grown adults in the world that also don’t want to hear the truth, and may be screaming this in their own heads, that I find interesting and maybe a little sorry for.

Truth is subjective most of the time anyway, and as Fox Mulder would remind us during the X-Files, it’s out there. Maybe some of the things that are truth that don’t bother me, like they do others, is because I like to look at the positive side of life, or am grateful for what is working, what is good. I also never assume “truth” from every blip I read on the internet, if the New Jersey governor is going to cut a bunch of programs, and drastically alter our budget-my first thought is to read the full budget. Because NJ needs help with its government, spending habits, and change is good. I am not a republican, I didn’t vote for Christie, but I at least have appreciation he is trying to fix things, and am grateful that I am not in charge of the millions of household he is.

Having an opinion though is important, and my one wish these days is for people to take a bit longer to formulate one, as opposed to the knee-jerk reaction, which usually makes them sound like a jerk. Saying you want Michael Vick disemboweled during a football game does not make me feel more sympathetic to dog fighting. But for the record, I think dogs-like horses- are heroes to humans, should have more rights and should never be abused or taken advantage. But wishing harm on others who could possibly just not know any better, or even those that do, only makes the opinions of those with hate as unimportant.

It is not want I want to teach my son, who will at times annoy people, offend them and may make choices or mistakes that will be upsetting. My open-hearted and open-minded ways of thinking are valuable, necessary skills that will keep him safe, loved and filled with possibility, despite the way of some people in the world. I want him to learn to handle the truth, accept it, think about it and move on.

Tuesday, July 6, 2010

What We Learn When Times are Tough

What we learn when times are tough.

I see it often in the media where most of what ails people is often their own doing, and this is the case for any of us at times in our lives, we may feel very full from eating too much cheesecake, this was our own doing, but when we feel sick from eating cheesecake that was spoiled or contained an ingredient we didn’t know what there, it is not our doing. For hey, why should someone one always pass up the occasional delicious slice of cheesecake?

But sometimes I read and listen to these alleged experts and really wonder if they have ever experienced a bad hand of cards? Where things happened that had not to do with weak or poor character choices, that were not out of being indulgent or entitled, and were just simply crappy things. Like living in a tornado free zone but a tornado just took out your house.

I am not Talking About People who are Oblivious to Their Idiocy-They After all are Oblivious

I guess I believe people are a bit smarter than they are portrayed on television and in many articles; it is the very reason why I generally loathe the third person writing style. Too authoritative, and patronizing to some, though for certain pieces, it is absolutely the correct style.

I have had my share of growing experiences like anyone else; times that were tough, sometimes because of foolish decisions like pursuing someone who was not capable of being a kind boyfriend to anyone, and probably needed some therapy before he even attempted to have any pets…maybe fish would have been ok. I have also had to make choices where all of them were crappy and just tried to pick the least crappy choice, hence, crappy is still crappy. Like having to choose to refuse to help out with my troubled sibling and single parent, so that I could of continued going to college this way I would of already completed that PhD by now, instead it may take the rest of my life. It was a crappy decision and went with what felt right, but wasn’t what was right for me, this same issue has followed me around a bit, but I digress.

But I have also had tough times in numerous other ways, things that were not natural to me I had to learn to adapt to doing or achieving, and many other issues I am not going to get into for this piece. But the biggest bane to my existence now, the troubles I have now, have nothing to do with crappy decisions I have made, or were forced to make. They have all to do with crappy luck. and not receiving help from people who could help, but don’t want to , therefore making the situation worse.

What Really Matters When Life Sometimes Sucks Balls

It is how we handle those times, what we can learn from them. For me, I learned most recently that I have to put myself closer to the top of the list, because no one is going to take care of me. If my child, my husband and I all need underwear, it should not be that one or both of them get the underwear but I do not. Nope, we all go without until we all can have it, because we all deserve to have clean underwear equally. There is a fine line between being unselfish and being a martyr, I am glad that I have never known the demons that make a person so selfish and self-centered. I would say I am glad that I am who I am, but basically that deserves to be rewarded and not punished.

I realize what I normally do is burn out, I take on all the responsibilities I can, I take on more work than I am technically capable, and I cut out all the things that help a person function normally, then I am sick. I just don’t realize it at the time because I think well if I just keep going then I am capable, but really that should be after I have had adequate rest, been on a vacation of some sort, have been eating fresh health food, been committed to the physical exercise that my body demands or it revolts, and having time for friends and fun. Because we need all of these things to live a healthy life. What is the point of surviving it if means you will wind up with a terrible disease that may cause early death or a lifetime of care?

No one is Trying to Achieve Poor Health; even Under-Developed Nations Seek to be Healthy.

Otherwise we could all just sit around in our own filth all the time and not bother paying bills, because who cares?

I just get caught up with things like, wanting to keep on the electric, and the water, and paying my taxes, mortgage and insurances. But the fact is stuff sucks for us financially not because we made some poor choices, not because we spend too much money or consume too much, but because shit happens, and when it does you need help cleaning up the shit storm or it will just continue to stink.

I am grateful to have learned and unequivocally know certain truths about myself that have developed through strife and struggle. I am persistent, resourceful, adaptable, a hard worker, imaginative, gracious, thoughtful, and I have trouble knowing when to say no, not so much to people anymore, but too myself when I think it’s a great idea to try to have the fourth unsuccessful yard sale, forgetting how I don’t have that much stuff, or when I want to chain myself to my desk and be my own content mill, because hey I did churn out 20 articles over two days while Noah was not here. Of course I also didn’t eat, shower, exercise, answer the phone, watch any TV and only took a break to go the bathroom and get some water. (And even cut down on the water since it limited my time with unnecessary bathroom breaks)

Now I know, that sometimes shit storms happen, because it gives the people in our lives and even strangers the ability to be heroes, who am i to deny them that? It happens to make a person feel more capable and worthy, atleast it always did this for me.

Monday, June 28, 2010

Sanity- See you in September

I was originally going to be writing about our adventure to Toy Story 3 this weekend as my next blog post- I have begun it but was not ‘feeling it’ as far as finishing it up. Noah is in the shower right now, so I have about twenty minutes to write, and actually what I most want to write about is the fact, I have twenty minutes to write.

It is the way of it, School is out and Noah will be challenging me as he is suppose to do, all summer long. Writing for me is not the luxury that is use to be about ten years ago, it is now a necessity because it is what is going to salvage us financially. So sometimes I get a bit tense about trying to complete a deadline or get work done, promote my book, find more work, network etc when I am under constant interruption. I do not attempt to work all day when he is home, but I do think working for one or two hours out of the day is not too much to ask for. Heck, I would skip it all together if it wasn’t a necessity.

Noah will at least be spending some time down Joe’s parent’s house throughout the summer, a few days each month will give me a few days to try to complete the entire months work. But, this is the best it can be, since I cannot afford a baby sitter, and I do not know anyone willing to watch Noah for free.

Noah has come a long way from the head banging, non-verbal, freakazoid that he was a few years ago. He still scripts and self-talks, he still smacks himself when he is upset, beeps and makes peculiar sounds. He still does not understand many social cues, or a lot of concepts, he can be found running or sitting naked in the house because he doesn’t understand ‘shame’. He is impulsive and will often do something while he is asking you, and when it is not something he should be doing, this can be a problem.

However he does ask a lot more questions than he use to, and he even makes more comments about things that aren’t just about stuff he wants. His poor sleep patterns have improved, where he is getting to sleep by 10 instead of after midnight, but 10 is still pretty late when you get up before 6 am, and have no time to yourself or with anyone. Once he is asleep it’s time to sleep if I want to be healthy, but sometimes I work so I can keep the electric on.

I know he could be much worse off, the work we have done is really remarkable, and I am grateful for what we have accomplished and the good people who have come into our lives to help. Summer is bittersweet though, since we can’t really go out and do things it’s just a lot of time trapped in the house, trying to make the best of things, waiting for September when there will be peace in the noise, and quiet back in the house just for those few hours......and he is finishing his shower early (sigh)

Wednesday, May 19, 2010

The Sound of Silence, Why YOU Need a Break and Why you Should not Apologize for it

Silence is often a rarity for parents. When you finally get it, there is such a peaceful feeling and realization on how you need it to be more at peace. It is also something we often forget that we truly need in our lives as much as breathing, food and shelter.  For without it, your life is full of annoyance and aggravation.

Children can be irritating but only because we are with them all the time and aren’t getting enough quiet time or time to ourselves. If we are getting enough time then things don’t annoy us. And it’s not just children; it’s our jobs, our pets, our homes that can cause irritation as well, when it is all of these things, its definitely time to go check into a hotel somewhere.  The annoyance we feel at times is our self telling us “hey enough, what about this, or that?” We all have needs, we need to exercise, we need to cultivate our inner self so we are better people to those we love, we need to communicate with our spouses, loved ones and friends, and sometimes we just need quiet or time away from our children to do these things.

Sometimes that need comes in the form of guilt. Our kids are climbing all over us, asking for things over and over again, sometimes things we just gave them. They are coming out from their beds at night and interrupting our time that we finally got or have designated as “our time”. And they are annoying us, so we feel guilty; because of course we are grateful for them. Just like the way our pets, bosses, jobs, schools and what not annoy us, but nevertheless we still value those things. But it is now that our bodies need a break from those things, because the cup is over full with too much of a good thing.

Guilt in this situation is really to yourself, you are denying yourself the needed time, or you’re denying it to your friends, spouse or whomever. And when this happens, it is time for a break.

I forget sometimes how much time has passed from when Noah was last away at his grandparents. But I start to realize it when I am getting more and more annoyed, and I know it’s not because I am overall unhappy. Overall I am grateful and satisfied in my life, but it comes down to basic logistics. If you’re constantly interrupted during your only down time with each other, it should annoy you, otherwise it wouldn’t mean anything and you didn’t need the down time to begin with.

Sending the kids off to grandmas, or sending  yourself somewhere away from work or the things that have overfilled your cup is a necessity to keep functioning as the human being you are or aspire to be. Everything in life takes a break, the sun goes down, the moon comes up, and if you believe in god even they took a day off. So must you, otherwise you’re just a victim to your own life. You eventually grow to resent things around you but it would be your own fault for not doing anything about it.

I know how that can be a challenge when you don’t have anyone who can help you, or maybe you don’t have the money. Resources are such an important part of living after all.  And this has been our story the whole time. We rarely ever had anyone who could help, sure on occasion I can send Noah to one of his grandparents. But we have also had the issues where we could not because life happens, someone got sick, something popped up, and sometimes all the stars” have to align, including on our end, to make things work out. This is just the case when you don’t have a lot of resources. If you have many friends, and a large family then ask them for help, they may not know you need it if you never asked before. Or maybe even if you have, and they should know you need it, they just may not be thinking about it. And sadly sometimes you realize, most of the people you know are selfish people, and have the type of family who thinks you should just do everything yourself, not ever ask for help because they have their problems too. 

This is where being creative, and sometimes just doing whatever you have to do, to make it so, is exactly what you must do. Because you are worth it. This is your life, not someone else's. You need to be able to live it. So do what you must, and don't apologize for needing to put gas back in your tank. 

Monday, May 17, 2010

Back in the Office

I have been working from home since the end of 2001 when I was no longer needed at my former company (which incidentally went out of business 4 months after I left..sorry suckers!) Most of what I have done hasn't been for pay necessarily, I was in school for a while again, and had a baby act. Eventually I moved onto ebaying off things we didn't need, to help make ends meet. Along with many other adventures that will have to go into another book :)

Once I was ready to go at it full time, Noah needed me more, and I still somehow managed to work alongside therapy and later therapists for him. I will never know how I did it.

However with Noah finally settled into a school routine, and eBay changing its complexion so much it is unrecognizable to people who have been there a long time. So much that it was actually going to cost me money to sell anything. I got out it, it took a year, but I got out. This past May I focused on writing the book

 I have been working at the kitchen table, amongst giant piles of school papers from Noah, bills, IEP stuff, papers related to my book and my writing jobs and then all the other typical papers people have that run a household. The table was also home to things that haven’t found their home yet, menus, junk mail.

A year ago I chose to finish writing the book at the table, just because the desk I did have at the time wasn’t promoting the writing experience I needed due to lack of elbow room and the space restrictions. Big massive desk which was not designed for really doing much but house things and look good. It was pretty, but not functional, but it was what I had for the past 8 years.

Then after the summer we brought in some other furniture when my dad and friends were moving as well as storing some stuff, I got rid of the old desk but still needed a new desk. The office because of all this and the holidays, and all of the other things we were doing turned into a giant closet. I knew it would not stay that way once I got a desk and new filing cabinet (since the old one was so old the handles had broken off)Figured while I was saving for a desk I would just work in the kitchen. I guess at the time I didn’t anticipate it would take this long.

I still haven’t purchased a desk, but I still got one from my husband’s parents who came upon one somewhere, either they found it or had it at home and didn’t need it, either way, grateful it made its way to my house this weekend.

What a difference though it has made, everything can go back to its rightful place, and I am not competing with my own space in a kitchen that does not have enough counter space for making most meals, at least with the table back it is better.

The point being, I am patting myself on the back because of all I have accomplished despite not having a viable work area, and being surrounded in chaos both figuratively with the papers, and literally with Noah and animals. Despite that, the normal challenges and not so normal, the numbers being what they are I have still managed to get up every day and continue to try, I have written almost 50 articles in the past two months, wrote a book and have been promoting it all by my little self with no help from anyone.

So now that I have received this desk, and got my office back, I feel lighter, and more focused. I realized through our own crisis I have mostly handled it well, mostly. Overall I try to stay focused on the solution rather than the problem, but I have focused on the problem more than I should. But now, I feel even freer of it. I have been telling myself to not think about aspects that I can’t change, my taxes, mortgage are what they are, food costs what it costs, being very conservative in all these aspects is still; what it let it be. There will be an answer, let it be.

Thursday, April 8, 2010

Patience is so much more than a virtue

Noah in ocean at Seaside Heights NJ in 2009 after many years of trying

I have been working my butt off to the brink of illness and partial insanity. Mostly happy crazy, but it has been difficult trying to find new ways to rob Peter to pay Paul. I know success is there, just waiting to happen and patience is tough when there is no timeline to work with. It is one thing to know that the bank account will yield the effort put forth next year, next month or later today…but when you don’t know, it sucks!! And it only sucks because of necessity, not desire, just the desire to have what is necessary.

I am fine with certain sacrifices or choices, I do not need fancy things like newer clothing or a more than 2 pairs of shoes, and I don’t need to get my nails done, get a new car every few years, drink fancy coffees or go shopping for fun. I don’t need many vacations but would like to do it more than once every seven years. In fact I think anyone that has a lot of stress needs to be able to take care of themselves, and really just being able to keep a roof over our heads and take care of ourselves is all I want.

Noah and Gabby on the beach, the only time we were able to go last year, just a few hours of mostly fun

I do not seek tons of money, just enough to pay the bills and a little left over to save for the things we want to do and when stuff just happens. It shouldn’t be that I can’t afford to feed my son the healthy foods he needs because that costs more than we have coming in and I should just keep him impaired and sick because that is what we can afford. The reason we have any difficulty financially is because of Noah's Autism, so I resent the idea that the only thing that we ”did wrong” was have him, which I DO NOT think, so if I am suppose to, then I say SCREW YOU to that and anyone who thinks it.
I don’t expect something for nothing; I just want back what I put in, at some point..and I would like to know when that is coming.

I am grateful for the BS though, what we have learned from the BS is who has been there for us, who helps and who doesn’t. One day there will be success, and I have to choose who I will then help, because it will not be right to help people who either did nothing when asked, or did nothing at all as if we don’t exist and have been asking for help, or the worse kind, those that actually think their problems are worse than ours and actually hurt us.

Kevin, one of the Great ones! with the fake fruitcake we pass back and forth at xmas time

Those standing with us when success happens will be blessed, because of our gratitude for their love for us, and those who do nothing, get...nothing because I won't take from people who deserve it to give to people that don't. I am not directing this to anyone in particular, but when I think about how tough it has been there are people who have made it a bit better. We all make a difference in the lives of the people we know it’s up to us to make it a positive or negative one. And because I have always brought positive stuff to the people I know and sometimes don’t even know is how despite any financial troubles I sleep very well.

Lord knows there are some HUGE douche bags in the world that have much more in the bank, but not in the soul or morality bank so I know I am richer than them. I can say at least I have always been honest, not envious or judgmental of anyone. I work hard, think about things thoroughly and believe in helping those less fortunate than myself. Somehow even though we have not been in a position to really help others, we still do. I am grateful for that, for being who I am, it makes me much richer in ways that are way more important, but would like to live a full life and not die from stress malnutrition or being homeless at some point. Doesn’t seem like I am asking much, I would like to be “normal”, well just below that is ok.

My awesome friend Carolyn and I giving the chips thumbs up, she is the best!

I know worry is useless, and I have to learn to be comfortable with the fact that sometimes there will be negative money in the bank, sometimes there will not be enough food on the shelves and until things improve there will be times we will need things that we won’t be able to have so life will just continue to cost more because of not being able to maintain. I just need to be patient.

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Tuesday, March 23, 2010

Make the World a Better Place by Being Thankful

                                Make it work people.” Tim Gun from Project Runway

                                           April Showers Bring May Flowers

Today I just had to vent, because I believe the world is a better place if we choose to see it that way.

One thing I have noticed throughout my life is the fact that no matter what, people will complain. They complain when we have a republican person or persons in office, they complain when it’s the democrats in charge. Proving that no one way is the right way. They complain when we are being taxed, and they complain when we are not receiving more taxes and cut expenses. People complain when it’s hot, or cold, when it’s raining or snowing, and I am waiting for the day someone complains that the sun is shining just a bit too brightly.

Anyone can complain, complaining is easy. All it takes is responding to an initial feeling of discomfort. A reaction to something that may or may not be happening, a fear, a worry and overall an unhealthy way to live. We all have ability to complain, and we all do complain. How often we complain and about what is a personal choice and also based on our own systems of how we respond to stimulus.

Not complaining results from taking a few moments to adjust to the initial discomfort of something, thinking about it and processing those feelings out, looking at perhaps the good side of the complaint. I have a headache, maybe I didn’t drink enough water, now you are acting on your dehydration instead of whining that you have a headache.

                                                        Snow allows for Snow Ball Fights with Those you Love

However if you have tons of headaches, and you have ran the gamut of things that can cause it , you should see a doctor for maybe you have a brain tumor, and that would be something worth complaining about, especially if you have none or crappy insurance. Which could also mean, you will not be able to see your doctor because some people out there think you shouldn’t have insurance because they don’t want it? This is also something to complain about.

Doing something to counteract the things we are complaining about is actually much harder. Because it requires ourselves to actually do something. We might have to think about things that hey, don’t involve us directly! How uncomfortable!

                                        Golden Retrievers Rarely if Ever Complain, and are Awesome Dogs

The only good thing about complaining is the fact that when you’re done, if you spent enough time on it that is, you will find a solution to what ails you. And if you do not, then you probably are not grateful for anything anyone does for you, ever.

I really fail to grasp why so many people wish to not live fully in reality, it is the only thing that is real. I do get it is fun to sometimes escape reality, but that isn’t real, and yes there are many drug on the market that can alter ones reality if they wish. But if you ask anyone who has to take it, they may complain about that too. Point being you may get what you wish for, to find out you don't really want it.

Is it really so hard to find the good in things? Snow sucks to shovel and drive in it, but its fun to play with, it’s pretty; it’s neat to see a pile of it fall in to your back yard from the sky. It’s real! It leads to snow angels, snowboarding, skiing, and hot cocoa; it’s not just shoveling and driving.

People complain a lot of about the weather, and about money, and how they are not satisfied with either. When really we do not control all of either of those things. Sure we can control much of what we consume; we can drive less if possible, but don’t control the price of gas, or milk. You can use less, but you still need so much to function. We can control whether we are going out in the weather, if we are driving or walking. We can put on our heater and our air conditioners, solutions to things that bug us to make it bearable, and the fact is they already exist…so why complain? Complain about something that doesn’t exist so maybe someone will make it, maybe you!

From now on I say when people are complaining, just ask them what they think is the solution, what is the answer. How can they make the sun come out when it’s raining? I want to see them balance the budget! You go find a solution to healthcare woes, you carry that burden of millions on your shoulders. Try that on for a while, maybe you will find you don’t have so much to complain about after all.

         My Son's Autism made being at the Beach Difficult, but he Worked Through it

I realize my rant about complaining is a paradox, and I am not suggesting people never ever vent. But I certainly would not recommend living your life around it, or complaining about things that have yet to happen

Don’t like what I had to say? Don’t waste your breath, I am not listening. I have dogs to play with, gardens to tend, people to love and words to write.

Monday, March 15, 2010

5 Tips for Taking A Child on the Autism Spectrum to Walt Disney World

5 Tips for Taking A Child on the Autism Spectrum to Walt Disney World

                                      Noah the Scientist at the end of the Imagination ride in Epcot

Traveling on vacation with children with special needs can be a very overwhelming idea and task. But with a lot of preparation and research, even with the challenges of Autism a family can have more fun than they could have imagined. This was the case for us this past December, I have composed here my top five tips ( full article including 5 more additional tips coming to a newstand near you)

1-Obtain a mobility pass, this is basically a fast pass, where the person with the disability as well as their party ( up to eight people) do not have to wait in the main line or wait to get the fast pass. Pass holders proceed in the fast pass return and show the Disney employee / cast member the mobility pass which works as a fast pass. This pass is obtained at guest services of the first park visited. Cast members from Disney do not need “proof of disability”, but the child needs to be present. However, bringing a doctor’s note, IEP coversheet with disability or other identification may be needed if the cast member is in training and a manager is not around.

2- Make restaurant reservations months in advance with a Disney agent, or on the Disney vacation site. This is an especially important aspect when dealing with food allergies and specific diets. Disney Chefs are very accommodating and can make almost anything with the proper notice. Reservations can be made six months in advance and should be made as far in advance as possible. The week of the guests trip a phone call should be made to confirm everything. When dining the chef will come out to the table to go over the menu and take requests. This also cuts down on wait time. All locations that serve food have informational packets with the ingredients used in the food sold. Menus are available on line at

3-Travel at times when the parks have lower attendance. The parks are very over stimulating for everyone. Traveling when the parks are less crowded cuts down on wait times everywhere, crowd noise and unexpected bumping into other people. Disney is typically lighter in attendance the week before Labor day through October 1st, late November through December before winter break, and again the second week of January through the first week of February

4- Be flexible -Traveling with a child on the spectrum is challenging, and flexibility for all involved is key to success. Plan on taking a lot of breaks, and to not be in the park all day. Fortunately the parks are loaded with Play areas and all of the resorts in the area have pools.

5- Be open to positive changes, Disney’s tag line is “a place where dreams come true” and the perspective of many parents that have taken their children there with autism is just that. Parents have reported a variety of improvements in their children after a trip to Disney World such as the child being more engaging , being able to handle waiting a bit longer in lines to even drinking out of cup when previously not being able to. A lot of patience, love and a little pixie dust can go a long way.

Noah and his cousin holding hands, something he never did before this trip. It is a magic kingdom!
Read more about it

Thursday, March 11, 2010

Noah and the Bus

Noah and the Bus

First of all I am overall grateful for the bus that picks Noah up for school every day. It is usually less stressful than the stressful drop off system. Where you are driving your car through a too small parking lot where people are shouting to have the kids jump out of the cars. They need to keep the line moving, but with all the cars and people and they shouting, Noah was stressed every morning, and getting him it the car was a daily problem. The bus is normally fine however, when something snaps in his mind, all bets are off.

Today was one of them mornings; the bus is running late as usual, Noah was exercising with the Wii Fit, and not really eating all of his breakfast when he began to get frustrated with every activity. Because he could not do it, the Wii fit basically is designed to sense your center of balance, and his is always off. So on days that, he is more unbalanced than usual, it is way off, and will result in him not being able to complete the tasks. So this can compound two problems, the problem that he is now frustrated in what he isn’t accomplishing, and the fact that he is unbalanced to begin with, which is the actual cause of his frustration being out of his control.

The unfortunate aspect, in the morning rush, is you don’t see it coming, and frankly a lot of the time you do not see it coming. There can be tells, but on this morning there were few to none, none that I saw at least while getting his bag and lunch packed and getting him ready.

The bus pulls up and is honking, Noah is still trying to complete the obstacle course, and he is stuck on it, he needs to finish it, so telling him you are giving him 20 laptops if he gets on the bus will not matter at this point. So I have to just turn it off. He then starts to run through the house and I have to catch him and get him to the door. He will not put on his jacket, his shoes, or carry his bags. I have to carry all of this and him to the bus; only, it is not possible to carry all of these things at the same time. He takes off and I get his stuff to the bus while he just runs around the yard refusing to go to school.

The aide on the bus can’t help, not allowed to leave the post, why they do not have an additional aide I imagine is due to funding. So this leaves him and me at a standoff in the yard. There is nothing that will get him on the bus, I cannot threaten or bribe. I only can catch, run faster and scoop him up and put him over my shoulder like a sack of potatoes. I do this, and put him on the bus, with no shoes, and no jacket. The jacket fell off in the house, he wants it, but I don’t go get it because all of the kids on the bus are waiting, they have issues too.

It’s a terrible time when it is happening because of the stress, anxiety involved, and the fact there is no patience in the adults involved either. They want Noah on to get to the next stop, they probably deal with this type of stuff all the time, and it is not a daily occurrence here, but it happens enough. But the point being, there is no help, even if you’re asking or pleading, or even just asking for what they think you should do. They have no suggestions, and they do not know what to do.

The most frustrating aspect is there is no currency to work with, in these particular moments. Children generally behave based on consequences of their actions, both good and bad. And when his mind snaps like this, there is no scale, no consequence that is high enough to make him comply. There is nothing that can be taken away or given to make his mind snap out of the fight or flight response. So the only thing that can be done is to physically catch him and put him on the bus. There is no preparation that can help, it is not as if I can decide to take away the exercise or the computer or the games, they are not the problem anyway. And the alternative is to just have him sit and wait for the bus, but having done this in the past, I learned this will only bring more anxiety since the bus does not show up at the same time. And even if it did, there would inevitably be some kid somewhere having a bad day that will delay the bus.

So the only thing I can do is put up with it and accept that some days this will be the case. After it’s over I need to decompress and center myself, and train to just run faster.

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Tuesday, March 9, 2010

Well they say Einstein had a form of Autism, turned out well for him

                                                 The Genius at Work

Noah has been very apt with technology most of his life. He has been capable of setting the timers on the VCR, all of the clocks in the house, and the DVD recorder. Some adults do not even know how to set the timer on their VCR/DVD recorder, Noah just figured it out without being shown. He only carries this ability to reading, nothing else that he has learned has come from learning on his own, or being modeled.

He started messing around with the computer when he was tall enough to see the keyboard and would peer at it in a curious fashion when I would be doing some work at the computer. Little did I know that allowing him to play with the calculator and play on some child websites would lead to him being able to create his own screen savers, install, download and eventually corrupt and dismantle part of the operating system on his own computer.

The disappearance of the main operating system happened yesterday, and the new computer that Joe and I purchased around Xmas (instead of swapping gifts) became worth every cent that I still owe on it. For if he was using my computer without my knowledge, all of my work, my book, and everything that matters that is would be gone. I do have most of my stuff backed up, but that is beside the point. The time it would take, to replace and put the material back in, if it would ever work properly would have been horrible. And some of it would have not been replaceable, because there are new things in my computer that I have not backed up yet. So thanks to the people of Dell helping us finance this computer, life goes on.

Noah’s talent with technology is one of those things that amaze me about him, and also causes us to need tons of money in the bank. For he takes apart and destroys things with his curiosity, one day though I hope if I have been encouraging him properly and his self-esteem stays high he will do something with this talent. Maybe he will be an engineer or an inventor and he can repay us for all of the many things big and small that I have had to replace over the years. And most importantly, I hope that he does some good with his talent, and does not become an evil genius. His self talking about bombs does not really concern me, because that would be silly, but I do hope he doesn’t’ play with his imaginary bombs at school. Schools tend to not be so understanding about these types of things in this day and age.!/pages/Little-Squares-with-Colors-A-Different-way-to-look-at-Autism/264272518793?v=info&ref=ts