Category Archives: Our Little Family

Various Happenings in the Robinson Family

#noalternateroute

As we continue to pack and get ready to leave for Texas, my heart continues to break. So many conflicting emotions. I don’t even know which way to go. I suspect I will run on autopilot for the next week for the most part. I have no clue what to do or how to do this, but I know that we have each other. There’s no manual for autism. There’s no manual for having to take your child 1200 miles away to get them the help they desperately need and deserve. There’s no manual for healing hearts that have been broken so many times pieces are missing. Yet, we carry on. Desperate for hope. Desperate for help. Desperate for peace. Desperate for change. We owe that much to him. We owe that much to ourselves and our family.

“Roads may be sometimes rough. But, with you, no matter how rough the road is, I’ll take no alternate route. Because together we can make it through. No matter how tough the going, I’ll keep on going. Because with you, my loves, the journey will never be boring.”-T.O.Y.

#neverthelesstheypersisted #autismawareness #searchingforpeace

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I Would Walk 1200 Miles

As we prepare for our 1200 mile journey to Texas next week, I feel like we have a clear plan for the immediate future. What happens after that remains to be seen. Not gonna lie. It scares the crap out of me. Hoping San Marcos teaches Monkey skills necessary to function at a “real” school so he can have more interaction with peers, gain confidence. And I hope we learn how to be better parents and guides for him. He desperately wants to feel “normal.” I don’t know what that means, but he has “it” in his head.

I have mixed feelings about him being away. As caregivers, we need a break to regroup, repair and become a stronger unit. As parents, the thought of a long separation is heartbreaking. But, I’m taking comfort in peace. For us and for him. He wants peace. He needs peace. He deserves peace.

#1 and #2

This blog has been swirling around in my head for days and days. So, here goes nothing.

The past few months have demanded big decisions. Life changing ones. The ones that could scar a kid forever if you make the wrong one…as if having me for a mother isn’t scarring enough. 😀

Our daughter will be entering her junior year at Western Carolina. She got into the Nursing Program which is highly competitive and selective. She’s a great student and her hard work paid off. Our big decision…on-campus or off-campus. She suckered me in joining the off-campus camp which meant I kicked it into high gear to convince the dads. We found an awesome place midway between Western Carolina and Asheville. Her clinicals will be in Cullowhee, Waynesville and Asheville. We picked up the keys and began moving in this past weekend. Next week, she goes for good. She’ll continue to work in that area after she graduates and hopes to attend graduate school there to become a Nurse Anesthetist. I know it’s the best thing for her but that doesn’t make it any easier to accept the fact that she’s on to her own life now. For real this time. My role is different and ever-changing. I guess I was still in denial up to this point. I’m so proud of her but it breaks my heart at the same time. In my mind, she’s still the adorable little girl with the big hair bow and the impish grin. So, there you go. Life decision #1. Next Thursday will be one of the most difficult days of the last 20 years of being a mom…right up there with seeing her walk into the school with a backpack bigger than her as she turns to wave goodbye. Seeing her back out of the driveway for the first time as a driver alone as she waves goodbye. Seeing her close the door to apartment #9 as she waves goodbye.

As Jess moves on to the next phase of her life, so does Shane. I cannot begin to tell you how proud we are of the little man he’s become. I honestly don’t know if the winds have changed because of the outstanding therapy he’s received from those who love him as though he is their own, because of maturity, because we’ve figured out how to roll with it or a combination of it all. In any case, I am thankful to the moon and back for the good karma that’s come our way. He’s incredibly sweet, funny, loving, smart and determined. Last week, one of his teachers told me that she loves working with him because he’s like a little adult with a wicked sense of humor trapped in an 8 year old’s body. That’s a great description. We have deep conversations about things from adoption to compassion to time travel to being an alien and more. He leads the conversations and takes great delight in sharing his insights with us. Sometimes when we’re tucking him into bed, he’ll say, “Will you stay here so we can have a conversation?” And, we do. About everything and about nothing.

This school year is a whole new ballgame. Life decision #2. We’ve decided to homeschool him to a degree and enrolled him into the virtual school through the South Carolina public school system. We’ll have a therapist come to the house for several hours everyday to work with him on academics and helping him manage a new situation and all that comes with it. Transition has proven to be tough in the past. But, it is time for the next step. Big decision for us. Do we rock the boat or not? What if it’s the wrong decision for him and/or the family? Even with having to spend so much time learning to manage his behavior and anxiety, he remarkably is on grade level in everything. He’s smart as a whip and a beautiful person inside and out.

As we set up his new school room, we’ve allowed him to play a part in planning. We’ve picked out the new furniture, school supplies and décor together. We decided to go with a world traveler theme. He wants “to be like Charles and go everywhere in the world.” So, we found a giant wall mural of a map and bought green pins to mark every place we’ve been together as a family which is a decent number of places in his 8 short years of life. As we were going through postcards of some of the places we’ve been, I told him we would use a special colored pin to mark the one place he wants to go most of all. His response? “I wanna go WAY WAY back, Mommy. I wanna be a time traveler.” Where the hell do I put the pin for that one?

In the words of George McFly, “Like I’ve always told you, you put your mind to it, you can accomplish anything.”

Hello, Old Friend…

Wow! I use blogging/sharing as therapy. Since I haven’t done it since January, that might explain my need for, well, therapy! In the online sense (and real life, too), my absence means that I’m caught dead square in the middle of a massive shit storm and am living in survival mode. There is a popular saying…what doesn’t kill us makes us stronger. Well, I can honestly say that I’m already fairly strong so the universe can stop trying to kill me now. No matter how many times I feel like the universe is giving me a big “*$%^ YOU,” I have to keep marching. I guess when things are out of your hands, you have no option other than to put on your big girl panties and keep moving forward.

The past six months or so have been a huge struggle for Shane and our family. Just when we feel like he’s making huge strides in many areas, there are others that creep up and send him tumbling backwards. As a mom, nothing breaks your heart more than seeing your kid be unsuccessful in simple things most parents take for granted like playing with the neighbor’s kids, going to the mall, going to Times Square specifically to go to Toys R Us and not being able to go to the third floor where all the super heroes are because he’s deathly afraid of glass floors, high ceilings, stairs and escalators. Talk about feeling totally defeated for a little boy to talk about something so much and be so excited then not be able to do it. I would probably throw myself on the floor and kick and scream, too.

We’re in the process of building a stronger support team than we’ve had in the past to help Shane navigate the world. We’ve added a developmental pediatrician (priceless), a developmental neurologist (pure craziness…think Dr. House with a great bedside manner), a pediatric psychiatrist and a vision therapist (new and yet to be determined). We have a referral to a new pediatric neurologist and an appointment with a geneticist in November…all in an effort to do everything we can. With a well-integrated, invested team in place, I feel more hopeful about the future than ever and am excited to hear their recommendations and plans moving forward. I don’t know how to express my gratitude to each and every one of them for taking the time to get to know and love Shane and being able to see him for the loving, sweet, thoughtful, funny little man he is. The staff at Cyzner has be invaluable and I am so thankful for their guidance, patience and dedication to Shane and our family.

One thing I’ve learned in the last seven years is that sometimes you blame yourself for everything. At least, I do. What could I have done differently? Did I do something wrong? I’ve cried a lot and taken a lot of time to reflect on life…what could’ve been, what is. There is something I know and I’m taking the risk of ticking off a lot of people, but I’m going to say it, anyway. I have friends who have children with special needs of varying degrees and we’ve discussed it so I’m not alone when I say this. When navigating the slippery slope we’re climbing, we often encounter people who might offer “help.” There are two things that, as a mom of a child with special needs, I do not want to hear. Please do not say that God gives “special children to special people.” I am no more “special” than my neighbor, friends or family. What kind of god would create “special” children who have to struggle daily with any disability? Or anyone else who suffers with pain or illness? Not a very nice one. I understand that there are many religious philosophies and I get that some people have to believe that there’s more to life than this, that there’s a better life beyond this one and will believe regardless of anyone says. They have to believe for various reasons…afraid of death, fear of having no purpose, not believing in yourself and your own strength. Do what you need to do to feel better, but please don’t tell me you’ll pray for me. Because you know what? It’s easy to go to bed at night, clasp your hands, say a prayer (for those in need and your favorite football team), then get a peaceful night’s sleep. But, one pair of working hands does more good than a million clasped in prayer.

I was raised in the south in a Baptist church. I was baptized and wholeheartedly believed what I was taught. With exposure to different people and cultures, I realized that the world was not full of God-fearing Christians and that there were so many different philosophies. I always considered myself to be spiritual but in recent years, I’ve called myself an atheist. But now I know that I’m not an atheist. I’m a humanist. There, I said it…MY NAME IS JANET AND I’M NOT A REPUBLICAN, LIBERAL (that’s pushing it), DEMOCRAT (although I do think donkeys are cute), A CHRISTIAN OR AN ATHEIST. I AM A HUMANIST.

hu·man·ist

/ˈhyumənɪst or  [hyoo-muh-nist or, often, yoo-]/noun

1. a person having a strong interest in or concern for human welfare, values, and dignity.

Stay calm, carry on and listen to this song.

http://www.youtube.com/watch?v=5TQAjXSD1PY

My Name is Janet and I am an Elf

It is said that time flies when you’re having fun. I guess that can explain the extended period of time with no blog. While most of my recent activities can be described as fun, I paid a high price for others (that’ll blog will come later).

I haven’t had a “real” job in over 15 years. I’m a real estate broker and a photographer but work at both on my own terms. I was in one of those “I’m not contributing anything to society and my family” moods so I set out on a mission. I can honestly say that I’m one of those people who can set my mind to doing something and most of the time, it all falls into place beautifully. After applying online to many jobs with no response and discouraged, I simply posted on Facebook that I really “just wanted to be a photographer for Santa” mostly being sarcastic more than anything. I couldn’t find a job…It’s not like I wanted to be a rocket scientist. But, with Facebook and the flap of a butterfly’s wing, the wheels began to turn.

In a million years, I never would’ve imagined that being an elf for Santa could be so rewarding and such a pain in the ass at the same time. In theory, it sounded like a blast. I figured I would have to show up for a few hours each week, work with the jolly old elf and his helpers, take pictures of adorable children and be thrust smack dab in the middle of the merriest frickin’ time of the year. At the interview, I was offered the position of Set Manager which would create a whole new reality and convinced myself that it would fulfill some of the emptiness I was feeling of not contributing, blah, blah, blah. Besides, I have an extensive background in management. I could do it (insert cheers and marching band)!

In the eight weeks that followed, I met many people who left a footprint on my heart. One of those people was Travis, a 33 year old autistic man with who showed up to the set an hour before opening to ask Santa for a job, $100 and a computer for his mother. With the help of Facebook friends, team members and mall employees, we were able to fulfill part of his wishes (not so much the job…yet). I met a mom whose daughter was visiting Santa for the first time in three years because her leukemia was finally in remission. We met a six year old with a chemotherapy port, bald and translucent who sat on Santa’s lap while his mom and aunt stood to the side, crying.  There was an 82 year old man who waited 30 minutes for his “girlfriend” also in her 80’s to take a picture with Santa. And, the elderly woman with her 15 year old poodle in a stroller dressed to the nines in real kid clothes, not dog clothes. She never had a daughter so the dog was her little girl.

Along the way, I met others who were a massive pain in the ass. They included the nasty Stepford wife who was pissed because I was “unprofessional” for having her kid make a funny face in his photo with Santa (a travesty!). There were many of her prototypes out and about who asked for repeated shoots because their perfectly coiffed screaming one year old was petrified of Santa and “wasn’t smiling.” (Really? Give me a damn break!) Still others who refused to buy the picture because their kid was crying. Hello! We tell kids never to talk to or take candy from strangers. Some are going to be a little freaked out when you put them on the lap of a big hairy man in a red suit doling out candy canes for bribes. Finally, there’s George Michael…I grew sick of hearing about his last Christmas.

One of the greatest gifts of all is the band of elves I had the pleasure of working with. The set team consisted primarily of kids recently out of high school and in college. There were a few middle-aged elves who would’ve been better off staying at the North Pole in the Department of Misfit Toys instead of exposing the rest of the world to their Grinchness. My supervising elves were always jolly and there to lend their priceless support and guidance.

The kids on the staff  were the best elves, prospering and growing. Most of them were eager to please and learn. I looked at it as an opportunity to teach them skills they would use for the rest of their lives. Several were painfully shy in the beginning and blossomed into bubbly, outgoing elves who were great at sales and customer service with their newfound confidence. Others used their jolliness to motivate each other and worked on perfecting their skills. They all WANTED to come to work (most of the time) and were disappointed when they weren’t on the schedule. They were the part of the experience I enjoyed and will remember the most. I hope to keep in touch with all of them as they continue their journey through life.

Overall, being a part of the Christmas magic was a rewarding experience. I learned that after 15 years of being out of the corporate world and losing a lot of confidence, I still have a little of what it takes to be “successful.” Our team ranked fourth in the nation with a 21% increase in sales over last year. I’ve been asked to manage the set again next year. If you ask me now what my answer will be, it would be no. But, a year is a long time and I will likely forget the negative aspects (much like childbirth). And, my band of elves showered me with gifts at the end of the season, gave me nicknames (mostly nice) and they all want to come back next season. They’ve vowed to blow up my phone and fill my inbox beginning in September to convince me to head the band of rogue elves that we were. That lets me know that in part, I accomplished what I set out to do…I hope I made a difference in their lives. Certainly, without them knowing, they made a huge difference in mine.

Santa and four of my favorite elves
Santa and four of my favorite elves

A New Day Has Come

There’s a song by Celine Deon, “A New Day Has Come” that was written about her struggle with infertility and the birth of her son. I listen to it often. I’m not sure why except maybe to remind me of how the stars aligned to give me a chance to experience the love of a second child. The song has been playing over and over in my mind while thinking of all the twists and turns I’ve experienced in my life. But, the song has brought new meaning to me today.

“I was waiting for so long
For a miracle to come
Everyone told me to be strong
Hold on and don’t shed a tear”

I’ve shared part of our story before about dealing with infertility. But, unless you’ve been through it, you have no idea what it means or how it feels. The hurt cannot be put into words. How your heart melts when you see someone who’s glowing because they’re pregnant. Or, how jealousy rears its ugly head when you see  or hear a baby cry. And, how you’re sure you’d be a better parent than a teenager with an unplanned pregnancy. They made pregnancy look so easy. I already had a daughter. I knew how amazing it felt to bring a life into this world. She is beautiful and I wanted to feel that again. Then, came the gift of adoption and showed me that there truly is no difference between being the mother of a biological child and an adopted child.

“Through the darkness and good times
I knew I’d make it through
And the world thought I had it all
But I was waiting for you”

I recently had the distinction of being the featured runner for Team Up! Autism Speaks for Run Disney’s Twilight Zone Tower of Terror. Doing the run this past weekend gave me plenty of time of solitude (2 hours and 20 minutes) to think about why I was running and our life with Shane. That was the first question I was asked during the interview for Run Disney. Why? I said that I was running to raise money and awareness for autism and that Shane wanted the medal (and my shiny skirt at the finish line, it turns out). I also shared that he was adopted because I’m proud to be an adoptive parent and to have the privilege of being his mom. Those are a couple of reasons but there are many others. I truly do want to help those who are affected much more than we are. I want to make a difference and be a part of something much bigger than me. I want people to keep their snide comments and looks to themselves when Shane has a meltdown in the lines at Disney or on the overcrowded bus or when he wants his Sprite in a wine glass. I want the strength to keep it together when he’s hurting so much. I no longer want to feel helpless. I want people to see Shane the way we see him…a beautiful brown-eyed boy with the power to make those around him laugh and smile.

“I can’t believe I’ve been
touched by an angel with love”

I’ve cried a lot of tears during the past week. I always cry when I finish long runs. I’m not sure why. Maybe it’s a sense of pride because I pushed myself to do something I never thought I could do (and I’m particularly fond of the running part). But, I also cried because for the first time I realized that Shane’s autism is much worse than I thought. I’ve always been really good at making excuses to explain his behavior thinking that part of it was a conscious decision by him to be a jerk. But, when he took a ride to the hospital last week because he severed his thumb after slamming the door on it, he was crying and hitting the top of his head with his other hand. I’ve seen other kids with autism do similar things but never Shane. I thought it was a fluke. But, he did it again when we were at The Haunted Mansion at Disney. He was scared to the point of shaking and pleading to leave. No matter how we tried to tell him it wasn’t real and it’s like a movie, he trembled, his heart raced and he cried hysterically. There were other different behaviors…hitting his injured thumb when he was upset, saying he couldn’t breathe on a crowded bus and trying to push everyone away, becoming so anxious and crying because he didn’t want the plane to leave without us. I could tell that he was trying so hard to be brave. Words cannot describe the pain of watching your child react like that and not be able to do a damn thing about it. I feel guilty for putting him in situations that I could’ve controlled or should’ve known better than to put him there to begin with.

I’m not a religious person. In fact, I’m an atheist. But, if I was religious now would be the time that I would pray for courage and determination to take away the hurt and pain that Shane and others like him face daily. I would pray for the strength to be the mom my beautiful daughter deserves and not be so stressed out all the time. And, to be the woman my husband sees when he looks at me and not feel or look exhausted. Let today be the day that those things come to me. A great honor has been bestowed upon me…their care has been placed in my hands. All I have now to offer is love. That’ll do for now. The rest will come.

“Let the rain come down
and wash away my tears
Let it fill my soul and drown my fears
Let it shatter the walls for a new, new sun
A new day has come”

http://www.youtube.com/watch?v=NaGLVS5b_ZY

Part of That World

In 1998 when my daughter was gearing up for kindergarten, I set out on a mission to find a good private school for her. The local public school system did not have a stellar record. I quickly realized finding the right school was going to be a task more daunting than I had imagined. There was a waitlist for most kindergarten classes. But, I met a lady in a store one day whose daughter was wearing a shirt from one of the schools I had visited. I asked her how she liked it and she said loved it. I told her about the waitlist. She said, “Don’t worry about it. Put on every piece of jewelry you own and wear your best outfit. Money talks.” So, that’s what I did. Within a week of the meeting with administration, a space magically became available.

When Jess started there, I threw myself in to every fundraiser that the school had. Somehow, I felt like it was my duty. I took on the challenge of chairing their largest fundraiser, a silent auction, for two years running. Each year, we raised anywhere from $25,000-$30,000 with just that one event. They also had a campaign of selling wrapping paper. All of the money was to buy new computers or playground equipment. Being so involved with the school allowed me to meet most of the parents. 99% of them were people I told myself I would never become, but who I was faintly beginning to see in the mirror daily. They seemed to be self-centered parents who thought they were better than everyone else, who only cared about what people saw. And, their kids were unappreciative spoiled brats who had no concept of reality. They wouldn’t be caught dead in something from Old Navy (or God forbid, WALMART) as they might burst into flames. If they didn’t get to play soccer with the big league or lacrosse, they might faint. It seemed that money (or fake money) was no object to them, image was. Those who didn’t bother volunteering were the first to complain and throw rocks at those who were volunteering. The school had about 100 kids enrolled at the time with tuition averaging $15,000. In other words, the school had a truckload of money for that time. Bottom line is that those kids were going to be okay and were going to have a successful school career without a handful of parents busting their ass to bring in more money to buy computers or a new slide. In hindsight, the school could’ve dropped some of their $1.5M to buy a few computers. We eventually left the school after 4 years when I realized that my child needed to be exposed to more diversity and that I no longer wanted to hang with the Biff’s and Buffy’s of the world. It was a world I thought I wanted to be a part of then realized I didn’t fit in, nor would I ever, nor did I even want to.

Fast forward 12 years…Shane’s been at his new school since December. For those who don’t know, it’s a school for children on the spectrum, ADHD and other issues. It’s a full day of ABA therapy, music therapy, art, etc. Because it’s a small school with less than 25 kids, the parents are not that active. They do meet monthly, but it’s more of a meeting to share information and resources. Recently, they put together the spring yard sale so I jumped at the opportunity to volunteer. The money  raised is generally used for computers and other necessities for the kids. I thought it would be a great way to meet the parents and get to know the administrative staff better.

For this story, it’s important to note that the tuition at Cyzner is approximately $27,000 per school year for a full-time student. Throw in another $5,000 for summer camps. In order for a family to afford the tuition, they have to make a considerable amount of money, make huge financial sacrifices or have great insurance benefits (like us). So, I guess for the sake of comparing them to the families at Jessica’s school, they would be the same economically or better. There’s a vast difference between them, though.

Although I had a preconceived notion of what the parents would be like, I discovered that the moms I met working with the yard sale at Cyzner do not give a rat’s ass about their appearance to the outside world. I saw the staff bending over backwards to help and lead. The parents will do anything to get their kids the help they need to navigate in a world of neuro-typical kids. If that means wearing clothes from Old Navy, so be it. If it means driving an older car, so be it. Skip the baseball, soccer, dance and other afterschool activities. If their kids have major meltdowns in a restaurant, or wear their clothes inside-out (a travesty!), rubber boots with dresses or shorts, they are not embarrassed. They’re just trying to survive.

After thinking about my experiences with the two schools, I’ve come to a couple of conclusions…the private school Jess went to was a world I thought I wanted to be a part of, but never would be accepted no matter what effort I put forth. While I realize that we are very fortunate to have nice things, get to travel to beautiful places and have many priviledges I never dreamed I would have, I hope that we are not viewed as hypocritical. But, I hope that our character, generosity, desire to “pay it forward” speak for us and do not put us in the category of the Biff’s and Buffy’s in the eyes of friends.

The world at Cyzner is one I never wanted to be a part of, but I am. They’ve shown me what’s important in life. It’s not what you have, what it looks like from the outside, how much money’s in the bank, the car you drive, the house, the clothes you wear or who your lunch date at the country club is. It took a hard knock, but now I know. It’s love, kindness, generosity, tolerance. It’s the world I want to be part of. It’s the world I’m in. It’s where I fit. I have been humbled.

Courtesy of: Enlightenment Ain't for Sissies

Why I Am Running

Running, racing and raising $$ makes me feel like I’m somehow making a difference. Last year I ran my first half-marathon to raise money for Leukemia & Lymphoma Society in memory of my dad who died in August 2010. This year, I’m running and raising $$ for Autism Speaks in honor of our son, Shane, who was diagnosed with an Autism Spectrum Disorder (ASD) in November of last year. I’ll be competing with Team Up! with Autism Speaks at the Tower of Terror 10-Miler in Orlando, FL on September 29, 2012. As much as I’m looking forward to raising $1,000 per mile, I’m also excited about meeting other families who are running to raise funds in honor of someone they love and whose lives have also been touched by Autism. Please take a look at my page and consider making a tax-deductible donation to support my fundraising efforts or pass it along to others who might consider it, as well. No donation is too small…every dollar counts! With a GOAL OF $10,000, I’m going to need a lot of help. Smile

P.S.-The monkey in the pic on my Autism Speaks page is Shane when he ran his first race a couple of weeks ago for Miles Against Melanoma (62 feet). Looks like I may have a new running partner soon!

http://events.autismspeaks.org/faf/donorReg/donorPledge.asp?ievent=1024092&lis=0&kntae1024092=F9B4235241EA4EAC84E3AB96F3DA1ABB

San Diego 2012

Me (second from left) with my very special LLS Team in Training
peeps after the San Diego Rock ‘n Roll Half-marathon

I’ve Run Out of Ideas

While I usually try to be funny and entertaining, the last couple of weeks have been especially difficult and full of emotions…inadequacy, anger, sadness among them. If you’re looking for a happy blog about rainbows and unicorns, you should stop reading and go elsewhere. Here’s the problem…I am a self-diagnosed perfectionistic control freak with Obsessive Compulsive Disorder, ADD, future member of Overeater’s Anonymous and Lazy Ass Couch Sitter Club. I feel like I’m losing my sense of humor which is probably my strongest coping mechanism. More and more often, I find myself less likely to laugh about things and more likely to cry instead. No clue why (menopause?). I have a birthday coming up which brings me closer to 50 (ouch). I have a daughter who’s is graduating in June and heading to college. I have a little boy who struggles to “make good decisions” at school and at home (no matter how hard he seems to try). Maybe those are reasons. Realizing that things are happening that are beyond my control probably doesn’t help.

My daughter and I are very close. We have a great relationship. One that I wish I had with my mother. Jessica has professed that I’m her best friend (although I think her boyfriend has weasled his way into that spot Smile with tongue out). The realization that she will be leaving home soon is really hitting me hard. It seems like only yesterday that she was dressing up the cat and pushing her around in a stroller or marrying our golden retriever. I’m not ready for the next stage of life and our relationship with her living 3 1/2 hours away. I’d be lying if I said I was ready. I think it’s going to take a long time for me to be ready. I can’t even hear someone ask her about college without welling up in tears (she looks at me everytime waiting for waterworks). But, I know that we have done a good job raising her. She’s a great kid. She’s beautiful inside and out, smart and ambitious. I’m prouder than anybody has a right to be. She’s going to be okay.

Shaney has been struggling at home and at school for a while now. He’s decided that he’s pretty much the “decider” in most things being asked of him. He’s as stubborn as a mule. At school, he sometimes refuses to do his work, stands up in the chairs, turns his desk over, cries, but what gets him into the most trouble there is potty mouth. He insists on yelling out BUTT and STUPID. I’m sure there are others (like the special word he called out when the teacher asked for words beginning with “F”). His teacher came up with the idea of putting tally marks on the white board in class to show him how many times he said inappropriate words to make him more aware. This week, we decided that I would give him two coins each morning. He would be allowed five tallies before having to surrender a coin. If he got into the car at the end of the day and kept one coin, we would do something extra-special. The first day he got in the car with both coins! YAY (computer time)! The second day, two coins! YAY (small toy and DS)! The third day one coin! YEEHAW (computer time and Happy Meal)! The fourth day…no coins! BOO (nothing electronic :/)! No coins would mean that the child stubbornly used ten potty words in a six hour period. To be honest with you, I don’t care if he says BUTT. I’m not particularly fond of STUPID. And STUPID ASS is definitely not cool. But, since there are only three boys in his class who pick up each other’s bad habits and feed off of each other’s energy, I get it.

Last night when I was trying to tuck Shane into bed, he refused to clear his bed of the mountain of toys, pick a book out for us to read and just stop being a jerk, in general. After I asked several times (okay, told him several times), I got no help. So, I said I could not read a story and sing lullabies if he didn’t get ready. That brought the onslaught of tears and a temper tantrum. Once he settled down, I sat on the bed and said, “I’m sorry you’re sad and upset. I’m trying to help you. What can I do to help?” From this adult trapped in a little boy’s body, I hear, “I DON’T KNOW, JANET! I’VE RUN OUT OF IDEAS!” That made me cry…and laugh, he laughed. Maybe, just maybe, my sense of humor is still here. It might be under a layer or two, but it’s there. I think it’s going to be okay.  I’M going to be okay.

You’re Not My Friend!

When you’re a parent, there are days when there isn’t enough wine, chocolate, beer, Xanax in the house to help you not pull every hair out of your head. Days when no matter how hard you try to be patient, nothing works and you turn into a raging lunatic (well, I do, anyway). Days when I am way too hard on myself for not being the perfect parent (whatever the hell that is) which results in crying and feeling worthless. And, when you have a kid who is defiant and has a difficult time with changes, transition and lack of routine, it makes spring break seem like a vacation to Hell.

Several days this week, Shane has had multiple meltdowns and temper tantrums. Let’s brush your teeth and hair…NO! Time to take your medicine…NO! AND YOU CAN’T MAKE ME! Time for lunch…I DON’T WANT TO EAT. IF I DON’T WANT TO, I DON’T HAVE TO! Let’s go see a movie…I’M NOT GOING TO SEE A MOVIE! We’re going to the museum…I DON’T WANT TO GO TO THE MUSEUM TO SEE THE STARS! Let’s go to Carowinds…I’M NOT RIDING ANYTHING EXCEPT THE SNOOPY MOON, NOT EVEN THE CAROUSEL (he wasn’t lying about that). So, I bargain, praise, bribe, provide positive reinforcement, take away privileges, send him to “the chair” to think while screaming and kicking the wall (him, not me). These are all the methods we’ve been taught to do. And, what’s funny is that Shane’s right. How do you make a six year old get out of “the chair” to finish a task because I’m on a schedule when he’s bound and determined to sit there because it’s not HIS idea to get up? Truth is, I can’t “MAKE HIM IF HE DOESN’T WANT TO.”  And, so it goes…I’M NOT YOU’RE FRIEND! I’M GONNA SAY BAD WORDS! I DON’T WANNA STAY HERE WITH YOU!

This has been the first extended break since Shane started Cyzner Institute in December. When he’s in school, the difference in his behavior is insane. He’s a different child. It’s difficult for me to tell what part is autism and what part is just being a brat at home. Obviously, the routine in the classroom helps him stay in control. This week has made me realize how fortunate we are to have the resources and benefits that are available to us. The fact that he has perfect days when he’s in school let’s me know that the therapy is working. Although we’re working with his teacher, therapists and psychologist to learn ways for us to help him manage his frustrations, this week has taught me that I still have a VERY long way to go with my education. We’re fairly new to the world of autism so are still navigating and finding more information daily to help put it all together. We are a family that’s always been spontaneous…spur of the moment movies, trips, restaurants, amusement parks, etc. I have to come to the realization that as much as I think things can be “normal” (whatever that it is) they’re not going to be. At least, not yet.

When things settle down from each instance of tantrums from a six year old amidst tears and hugs (from me and him), I hear, “I do wanna be your friend, Mommy. I love you. I wanna stay here with you forever and my whole wide life, Momma. You’re my favorite. You’re the best Mommy ever.”

And, at the end of the day when the last line of the lullabies has been sung, I whisper, “Always remember and never forget…” the sweetest, most adorable brown-eyed boy I know chimes in, “that Mommy will always love me, no matter what….even if I’m mean. Right, Momma?” Right, Shaney…no matter what. All is well in the universe. For now, anyway. There’s always tomorrow. Smile

We did figure out a way to ride in the car with the top down this week…put on goggles to block the wind and sun! 🙂

How You’ve Grown

There’s a song by 10,000 Maniacs that reminds me of what’s fading quickly. The song makes me think of all the things I will miss….things I saw for the last time without realizing it. Jessica letting me put a bow in her hair, reading a bedtime story and singing “Lullaby” by Billy Joel, licking people pretending she’s a cat, seeing her toothless grin as she heads into school waving. Shane making masks out of ketchup at dinner, showing everyone “pretty eyes,” donning his Spiderman costume, making sure Blankie is with us wherever we go, screaming curse words on the Tilt-a-Whirl (I may see that one again).

Although I’ve seen those things for the last time, there are things I see now and will see later…Jessica growing into a beautiful young woman inside and out, still sitting on my lap when she gets home, coming up with new affectionate nicknames for me (mostly nice ones), going to her senior prom, graduating high school, going to college. Shane holding my hand in the backseat on the way to school and kissing it when he’s ready to let go, tucking him in at night while singing “Leaving on a Jet Plane,” “Rock-a-bye, Baby,” “Twinkle, Twinkle Little Star,” going to mainstream school, playing a team sport.

I know it’s cliche’ but being a parent is the most difficult job in the world and the most rewarding. And, while it’s filled with moments of joy, laughter, beauty, it’s also filled with sadness, frustration and feelings of helplessness. It’s not possible to enjoy every moment, but it is possible to slow down a little and enjoy moments that you can…just in case it’s the last time you’ll experience it.