Tag Archives: Autism

A Letter to My Son’s…and My Daughter’s IEP

Hi There! It’s me again…

It’s been a while since I’ve actually opened both of you. Maybe it’s because I have you memorized like the back of my hand. Or maybe, it’s because I truthfully get a bit sick (both physically and mentally) of you sometimes… You and I both know that there are some reasons for that.

Regardless, once again it’s January, and in a few days, we will be meeting along with several others. They call us a team. Your drafts have already been sent home for my review, my notes and questions have been made.

In a few days a copy of your 25+ pages will be passed out to each member of the team. We will start by introducing ourselves; and then the real fun begins. Over the course of two hours (sometimes longer) we will discuss my parent concerns and then your present levels of functioning. We will discuss your goal data, and determine whether the goals written on your precious pages have been met. If your goals haven’t been met, we will discuss the possible causes, brainstorm solutions and reword the goal until the verbiage is so intricately precise. All in hope of giving my son and daughter the best chance possible to make progress in order to achieve academic success. We will then discuss and determine each of their classroom accommodations:

Will a 4×6 or a 3×5 index card be allowed to be brought to class to remember math and science formulas? Yes, your words are that specific.

You state that you do not allow double sided worksheets/articles to be given to my son or daughter for flipping back and forth is too distracting.

You make it clear that study guides are to be given no less than 4 days in advance.

You state that tests are to be read to my children, there are to be no true /false questions and they are to get the double allotment of time to take assessments for, their processing disorders make all of the above challenging.

I won’t bore you with the many  other speech, OT and social work accommodations that you hold. You know exactly what it says.

We both know that an enormous amount of time is dedicated to combing through your words, for, as nit-picky as it is, these very important details help to ensure that my children achieve academic success. A few more loose ends are tied up. And if everything goes well, and everyone is in agreement, signatures are obtained and your new pages are ready to be followed….that’s in a perfect world.

Now don’t get me wrong, most of the team takes you back and begins to painstakingly implement your every word immediately. But there’s seems to  always be  that one team member. The one who thinks that they are above you. The one who thinks that it isn’t their job, but someone else’s, to read you or even acknowledge you. The one who thinks part, if not all of you is stupid. The one who thinks that they don’t have time for you. The one who takes your precious pages and tosses you aside, throws you in a drawer. It’s funny how that one team member is always the first to roll their eyes at my children, get frustrated  when they aren’t understanding or performing. And they are always the first to call and tell me. It has to be an awful feeling to be abandoned like that after the entire team worked so hard to create your pages. If only your words were read. If only you were heard.

Honestly,  as much as I truly love and appreciate you, I really wish that you were not a such an enormous part of my life. Oh how I wish that I could send my children to school and go about my day without you being on my mind, every hour, heck, every minute for that matter. How I wish that I did not have to use up precious vacation time to meet with the team or field phone calls and emails.. I mean, a beach and an umbrella drink sounds so much better than a board room; and if given the choice, I would think that you would much rather still be a tree.

And then there’s my reputation that you have indirectly helped me to achieve. I know that I am “That Mom”. I know that I have been called a b*itch. I also have heard through the grapevine that I am a “piece of work”. That’s been my favorite phrase to date. But no worries, as the old ‘sticks and stones’ adage goes…..names will not hurt me. You and I both know that my children are entitled by law, to receive a free and appropriate education; so therefore, you are the law.  you are to be followed. I guess that together, we will have to continue to be that reminder. If only we were all a part of the team.

So, in a few days, the team will be gathering to pour over your precious pages. We will review you, discuss you,  dissect you, and sign you. I just sincerely hope that this year, everyone spends time with you and really gets to know you. Because after being a part of an IEP team for 13 years, I know that you really truly do have a lot to say. You really do know how to make the lives of all those involved a WHOLE lot easier.  You just need to be heard.

With Love,

Mom

 

 

“I’m Sure That You Wish That Your Son Didn’t Have Autism, Right?”

Not too long ago, I picked Adam up from his beloved weekly art class. It was a pretty typical pick-up. I found Adam, in his very methodical, autism manner, returning his brushes, one by one in order of size to the container. He returned his blue apron to the same hook and rearranged the rest of the aprons in rainbow color order. He then returned to his easel and carefully removed his art board from the clips, first the right side, and then the left side, and returned it to his art case. He finally adjusted his signature black ‘engineer’ hat, then put on his jacket. I have learned, after many, many years…just to be patient and wait. While he was going through his routine, another mom, who was walking out the door with her daughter, stops, takes a step back and says.

“Oh, Adam is your son! His artwork is beautiful. I would have never known that he had Autism. I’ll be that you sometimes wish that he didn’t, right?

Now, being a mom of a child with Autism for almost 12 years, I am accustomed to the looks, comments, suggestions, and the input of what people have “heard” and what people have “read”. I am used to smiling politely when people make “suggestions” as to what I should try, how I should “approach”.  As an autism mom, you learn to develop a really thick skin and learn to let a whole lot of things roll off your back. However, I have to say, that this particular encounter, with this particular mom, really stopped me in my tracks. And it really surprised me, for I am typically, not ever, at a loss for words. But this time, I was. All I could do was look at her, raise my eyebrows a bit, and walk out the door; and, in retrospect, I hope that my lack of ability to speak at that moment was a bit more powerful than any word that ever could have exited my mouth.

That encounter happened almost two months ago. I immediately came home, opened my blog site and started pounding on the keyboard of my laptop. The fact is, anything and everything that I was writing was just turning into a rant. I really didn’t feel that much better. So there my words sat….in my draft file….until now.

I read a blog post on Facebook last night entitled  I Know What Causes Autism . It is a hilarious account of all of the ridiculous explanations of what ’causes’ Autism. It really hit me in the gut, for as much as I am curious as to what may have caused Adam’s autism, in the end, does it really matter? Do I wonder sometimes, why Adam is different than my two older, typical children? Of course. Do I sometimes wish that my son did not have autism? Sure, sometimes. Would not having autism mean that I would not have to:

  • make sure that every restaurant that we go to have chicken tenders and fries on the menu
  • run around town, sometimes to four or five grocery stores in frantic search of Blueberry Pomegranate Gatorade..the only “acceptable’ vessel to wash down his medicines?
  • pack up all of his favorite foods when we visit friends homes or go on a vacation?
  • hurl myself like Superwoman, shielding Adam from even a glimpse of the ‘evil’ strawberry?
  • worry that he is being treated fairly by his peers?

When you really get down to it, these ‘inconveniences’ are pretty typical, pretty minor and pretty insignificant. Most of you, with typical children can probably relate.

But, not having autism would mean that I would not:

  • have a tour guide who knows every stop in every order of every Chicago Metra train line, for I will never get lost
  • have all of the beautiful artwork that I have decorating the walls of my home
  •  have a ‘guaranteed’ clean bedroom and an organized (by color…a little excessive) closet
  •  know the exact day of a week that a photograph was taken based on the color shirt that he was wearing
  •  know the exact date, month and year a significant (and sometimes insignificant; for instance, his sister not turning in homework) event took place
  • have two incredibly caring, tolerant, patient typical children, because their younger brother’s autism is the only thing they know
  • have learned to appreciate ‘baby steps’ in order to keep the big picture in perspective.
  • have the closeness that we have as a family
  • have learned the true meaning of patience and acceptance

The list could go on and on……

But, finally, and most importantly, if Adam did not have autism, I would not be constantly talking at infinite length about his absolute favorite topic…. my butt. As odd as this is, it’s also a bit endearing. I’ll bet there aren’t too many moms out there whose sons unconditionally admire their butt.

So,  “Mrs. Art Mom”,  to answer your (I’m sorry, ignornant – yes, a part of me feels better) question, no, I would not trade my son, for the person that he was born to be. Not for a million, trillion years.

 

Never Stop. Never Give Up. ….But if Something Gets in Your Way, Just Give It an ‘Ass Kick’!

Posted in life lessons by

It’s that time of year again!  Animated conversations with the ones you love that go long into the wee hours of the morning. Laughing, and A LOT of crying. Reflecting on times of long ago; both good and bad, and excitedly talking about the here and now and what could be and what I know, in my gut, will be. An then there’s the wine…my tried and true friend. The one that gets me through, no matter what. No…..I’m not talking about the holidays…… I’m referring to preparing for Adam’s upcoming IEP.

For those of you who are unfamiliar with the term IEP, I am referring to an Individualized Education Plan. The 20-30 page ‘labor of love’ that is meticulously devised over many hours, days, and months for those of us who have kiddos who fall into one of the 13 categories of disabilities. I am lucky enough to have not one, but two children with IEP’s.  My daughter: Specific Learning Disability-Dyslexia; and my youngest son, Adam, who falls into 3 of the 13 categories of disabilities;  Autism, Speech and Language Disorder and Other Health Impairment – a seizure disorder. Are you confused? Exhausted? Shaking your head? Probably.Trust  me….I get it. in fact, this is how I feel most of the time. And I know that there are many, many, MANY parents out there, who just like me,  proudly wear the same badge on their chest that I do.   We are a very unique club.

Recently, my nights have been spent wide awake, obsessing and worrying, for Adam is up for his three year re-evaluation with all of, as I like to call them, the “ists” Over the next two months his occupational therapist, speech therapist, behavior therapist, school psychologist and the school social worker will evaluate him in their own areas of expertise to determine his growth. In the meantime, the “ists” have also assigned my husband and I our own ‘homework’; numerous evaluations which dissect our own personal points of view of our son; his behavior, attention, development, independent skills, early years, health history, current medications, etc. My hand is literally cramped from drawing over 800 tiny circles around answers to the questions and my eyes are literally crossed from the fine print that I have spent the past two weeks reading. As much as I know how important this information is, and how necessary it is to gather the most accurate information of my child, I really am so over answering these questions for I am now going on my 13th year of ‘doing’ IEP’s. By the time that I am done being cross-examined by mounds of questionnaires,  I truly start to wonder…”did this really happen or did I dream that’? I mean, on Adam’s really good days, “almost always” will apply. On the crappy days, “never or almost never” hits the nail on the head and then their are the days in between that  “sometimes” will apply. To an autism parent, each one of these days has it’s individual and unique meaning. They cannot just be lumped into 800 questions.  I mean, how do you really objectively fill out these forms?

So as much as I have been losing sleep, dreading these forms, fearing these upcoming evaluations of my son, and going through all of the different scenarios in my head of what these forms and these upcoming evaluations will tell us,   I was reminded this week of how far he has come since our last go-around of forms and tests in 3rd grade. I am often amazed and truly grateful that these “little” reminders present themselves when I need them most.

The first came earlier this week when his language arts teacher sent me an email asking me to be sure to ask Adam to show me the project that they had worked on in class today. She said that he was really excited to show me a story that he wrote and narrated. I couldn’t wait to get home from work, confiscate his iPad and watch.

Just three short years ago, Adam was not speaking complete sentences. He honestly could not even write more than 2 to 3 words in a sentence. Heck, on some days, we were even lucky if he could write a sentence. And then there was the time not too long ago,  that his neurologist considered him to be non-verbal.  He truly has come a long way.

My second reminder came on Friday evening when Adam tested for his green belt at his Tae Kwon Do school. He has been practicing the green belt curriculum, his forms, Korean terms and his pretty difficult board break, diligently, for the past two months. I grew more and more confident that he was going to pass his belt test with flying colors as I watched him warm up and practice his forms as loudly as he could. As my husband and I were chuckling because he really was EXTREMELY loud, his Master presented him with the ‘Exemplary Student’ award for “never stopping and never giving up”. Adam proudly accepted his trophy bowed to us and then happily continued right on with running though his various kicks, including my two personal favorites: the “frozen up kick” (front snap kick) and his “ass kick” (axe kick). 90 minutes later, Adam passed his belt testing and earned his green belt:

He even tackled that challenging board break!

My third reminder came yesterday. All three of my children participate in our school district’s phenomenal choir program. Once a year, all 8 choirs from all 8 schools in our district come together for a truly amazing day of choir workshops. The last hour is filled with beautiful pieces of music that our extraordinary music teachers have painstakingly worked on with our children over the first 9 weeks of school. It is a truly moving experience to see over 700 choir students from the elementary, middle schools and high school perform these pieces for family and friends in the school field house. Adam couldn’t wait for this day to come. He proudly dove into dress clothes and tie and stood in the front row singing very loudly and proudly…..


…and to think…just 3 years ago, we were lucky if he could tolerate one hour as an audience member. He truly has come a long way.

So tomorrow, I will be sending my 800 question manifesto back to the “ists”. From this and his upcoming evaluations,  a new plan will be devised and then presented when we convene at his next yearly IEP meeting in January. In the meantime, I have to keep reminding myself to keep putting one foot in front of the other, and remember an extremely valuable lesson in which my son taught me this past week…..To ‘never stop and to never give up’.

Raspberry Iced Tea, an “Epic” Pillow Fight, Ke$ha and a Box of Tampons….

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It’s been an exciting weekend. My middle son, Alex’s baseball team won their Fall Ball league championship. The team has only played together for 5 weeks and they ended their season undefeated. As fun as it was watching the team pose with their trophy in their first place sweatshirts, and as proud as I am of my son and his team, I couldn’t help but think that this was only the second or third time in the past five years of playing travel baseball we have been able to take this picture. Maybe that’s why this picture was all the more special. No sooner did we finish this game, our team was back on the road to our final tournament of the fall ball season. I know…. We’re one of those  families.

Sports are a big part of our lives. My daughter, Lacey, danced competitively for many years. She now dances on her high school dance team and is a member of her high school track team. Alex runs cross country, plays basketball and lives and breathes baseball. Adam plays baseball, soccer and is passionate about Tae Kwon Do. Our family vacations are planned around tournaments and competitions. In fact, sometimes our family vacations are incorporated into their sport schedules. I, myself, grew up playing travel soccer. I got to play in some pretty awesome places.  Competitive sports have always been a way of life for me and now I get to live the world of competitive sports from a different perspective… as a parent.

I love to watch my kids participate in sports.  I know first hand, there is so much to be learned from playing sports. And there is so much more to competition than the wins and losses.  There is a difference between being a winner and winning.  A winner works hard, keeps a positive mind, picks up a teammate who is struggling, works hard to better themselves and their teammates, and they never EVER think that they have mastered their skill. A winner leads by example, makes no excuses, and never EVER gives up. A winner develops close relationships with their teammates. But most importantly, a winner has FUN.  These were qualities that were pounded into my head by my coaches while growing up. I am more often than not, reminded of how many of us misunderstand the difference between a winner and winning. The bottom line is….how many wins do you truly remember anyway?  Thus, the reason I had to snap this picture……

Unfortunately, so many of us get caught up in the ugliness of sports….winning. Everyone knows THAT parent. THAT parent  is always yelling at their own kid to run faster, swing harder, dance cleaner. And after they are done criticizing their own kid, they start targeting the other kids on the team. They just can’t help themselves. Winning is just that important to them. They suck the life out of their own kids, not to mention, the rest of team, the team parents, and the coaches. I’ve experienced THAT parent. They truly make me want to stick hot pokers in my eyes, for I’m convinced that the hot pokers have to feel better than enduring hours on a sidelines with THAT parent. In addition, look at the kid of THAT parent… Do they ever look happy? Think about it….

I look back on my own days of playing competitive soccer. My second home was a soccer field. I vaguely remember the wins. I vaguely remember the losses, for that matter. What I do remember is the fierce friendships that I formed with my teammates. Most of whom I still talk to 30 years later.  I remember traveling to overnight tournaments, staying in hotels and the crazy pool parties. I remember sitting on the floor in the hall near our room listening to Prince, The Cure, Duran Duran, the Pretty in Pink soundtrack, and whatever other music was current and popular at that time; over and over on our Walkmans, until we knew every word. I also pride myself on my ability to style every type of braid known to long hair for this is how we passed time in between games…by the way, teammates…my daughter is truly grateful to you! I remember the team lunches, the team dinners. But, I think my most favorite of all of my soccer memories is a long drive back from a tournament in Cincinatti, way before there were televisions is cars. All of the books and magazines that we brought with us were read and tossed aside. We were beyond bored out of our minds, when, a box of tampons caught one of my teammate’s eye. This little blue box of individually wrapped cotton, suddenly came to life. Our tampon family was born, complete with faces and names, all hanging by their strings and happily flapping outside the window all the way back to Chicago! I remember the endless belly laughing until our sides were ready to explode. Obviously a memory that I will never forget.

I am currently sitting on the sidelines of our third game of Alex’s team’s final baseball tournament of the fall 2015 season. We’ve won two games and as of right now, are currently winning our third. I don’t know what the outcome will be. If we win, I’ll be standing there with my camera, because otherwise,  I’m pretty sure this win will be long (or shortly) forgotten. I will happily remember, however, the boys that I took to lunch today in between games, chatting about how great the raspberry iced was in the dining room during their Cooperstown trip this past summer and reminiscing about the “epic ” pillow fight that broke out among the teams on the last night that they stayed in the bunk house; all while Ke$ha’s Tik Tok was blaring on my car radio and the boys were singing at the top of their lungs all the way back to the field.

You’re Out of Words in Your “Talk Jar”

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A few summers ago, Adam and I were sitting on the back patio, on a beautiful evening, having dinner. It had been one of those days; constantly on the run, driving my kids to one million places. Dinner was the first chance that I had to catch up with Adam and to find out how his day was at camp. I must have been chatting away, peppering him with questions. I’m not even sure that he was answering me. I will fully admit; I hate silence. After about the 6th question, Adam held his hand up and said “Whoa! Mom! You’re out of words in your talk jar”.

I remember his comment stopping me dead in my tracks; my jaw dropped. I also remember shaking my head and chuckling, for he truly has a knack for saying extremely quirky things that initially don’t make sense. However, after thinking about it, they actually make a WHOLE lot of sense. He just told me in his own quirky way to “shut up”!   I often comment how there are some true advantages to autism directness. I love that these kids say what they mean.  In their minds, the sky is blue, the grass is green, and every other aspect of their life is either black or white.  After that night on the back patio, I silently vowed that I was going to keep this comment in my back pocket for, for in my opinion, it was brilliant. I knew that someday, I would find this phrase to be quite useful…… And for me,  “someday” came this past week.

For the past five days, I wasted many hours of my life , trying to convince an individual that Adam could participate in an activity independently. Unfortunately, this person went to all ends of the earth to wear me down beyond belief. In the end, I decided that it was not worth my time to try and convince this person otherwise. In my opinion, Adam was being discriminated against, not to mention my feelings that I was being harassed and judged as a parent. There are just some people who unfortunately are too paralyzed by their own ignorance, fear, and assumptions,  not only about Autism, but life in general. Over time, I have learned, in these situations, that I will not get anywhere with their narrow mindedness. Thus, my new favorite mantra:

not my circus

As much as I continued to remind myself about the circus and monkeys, I admit that my level of frustration continued to multiply. I continued to obsess and my anger continued to grow.  I couldn’t fight back the tears. I had many lengthy conversations with this person in my head. I imagined all of the inappropriate things that I would like to say. I imagined my best upward cut clocking them right in the chin. I imagined my best roundhouse kick firing right at their gut. I even (immaturely) imagined tripping them flat on their face and yelling “ha, ha….ha, ha, ha!”. Or my most favorite, just flat out tackling and choking them. As I am reveling in my mental images, my emotions then turned to sheer panic, and self doubt; questioning myself whether  Adam will be able to, one day, go to college, be able to live independently, and find a job. This made me even more angry. I was so mad that this person, and their narrow views, caused me to doubt all of the things that we have fought so hard to put into place for our son. To doubt all of his many accomplishments over his short life. So, to this person, I would like to say…..

 “You’re out of words in your talk jar”!

It was only after a night on the sofa eating ice cream and watching mindless reruns of anything I could find, that I realized that I had to take a step back and remember all of the good that surrounds Adam and our family. All of the things that life has taught us about raising a child with Autism. I began to make a mental list of all of the people that I would like to thank, and I suddenly realized that this list of positives far outweighs the negatives. And to each of these people, I would like to say:

  • Thank you to all of Adam’s wonderful doctors who always speak directly to him and ask him your questions directly and concisely. In addition, thank you for your endless patience in answering all of my many (and sometimes ridiculous) questions.
  • Thank you to the wonderful directors of the school and community theater programs who always find the perfect role for Adam in your plays and musicals.
  • Thank you to Adam’s wonderful art teachers at our community art school who “shoo’ me away at the door and allow Adam to independently express himself in his most favorite way for two hours every Wednesday.
  • Thank you to Adam’s Tae Kwon Do Instructor who tells me that “he will see me in an hour” while he consistently holds Adam to the highest standard just like the rest of his class; because he KNOWS Adam can do it.
  • Thank you to Adam’s teachers who roll up their sleeves, dive in with your “can do attitude”, and hold my son to the same standard as all of the other students in his class, because you also KNOW he can do it.
  • Thank you to Adam’s soccer and baseball coaches who work so hard and dedicate so much time to ensure that he can play the two sports that he loves. 
  • Thank you to all of our wonderful friends who never, for a second, treat Adam differently.

As I continue to reflect on my past week, I realize that among all of the aggravation that I experienced, I am truly grateful for the reminder that there is a lot of good to be found around me. My suit of armor as a special needs parent is even stronger. And on that note, I would like to say:

HEY INTOLERANCE, ASSUMPTION, and IGNORANCE!!!

You’re Out of Words in Your Talk Jar!!!

Just Push Her in a Bunch of Butter and Lock Her in the Closet

Posted in Autism, Family, humor by

 

It’s the last weekend before dance classes, baseball, soccer, and school activities return with a vengeance. 2015 has gone by so fast. Lacey is 6 months in to having her driver’s permit and as she was driving us to a soccer game and two baseball games today, I was mentally remarking how well she is doing behind the wheel and how she gains more and more confidence each time we get in the car. Meanwhile, back in the peanut gallery, Adam is giggling hysterically in the backseat and going through one of his favorite scripted dialogues about Lacey and her driving:

Adam: When Lacey get’s her driver’s license, she will take me to the Metra station, to Dunkin Donuts on Saturdays, take me to art class and Tae Kwon Do, and to Culver’s all of the time. But if Lacey crashes mom’s car or the driver’s ed car, what will happen?

Me: I don’t know buddy, you tell me.

Adam: If Lacey crashes mom’s car or the driver’s ed car, she’s going to get ‘all flunked up’ 

He then continues to laugh hysterically, which, I have to admit, every time I hear this, I chuckle to myself, for he has no idea that he is so spot on in so many ways. Lacey is always such a good sport about this image that he has in his head and will usually throw in a chuckle as affirmation.

At one time or another, we have all been on Adam’s “list”; but my poor daughter has been on this list for quite a long time. He has taken an extremely strong interest in her demise. Adam continually imagines Lacey flunking all her classes and not being able to go to college, locking her in closets, moving her into other rooms in our house, or better yet, other people’s homes. Yes, he has relished in his sister’s failures for what seems like and eternity. In his autism directness, he even flat out tells her that he only likes his brother. And while we continually correct Adam and remind him that he can’t hurt people’s feelings by being so direct, It just seems to repel off his head. And Lacey continually amazes me as to how she always seems to take it all in stride. She may, once and a while, throw in an eyeball roll, but her patience is endless with Adam.

Adam LOVES puzzles. He can typically complete a 1000+ piece puzzle in about a week, with minimal help. Upon completion, he always asks me to take a picture, then immediately destroys the puzzle and moves right in to the next one. He always tries to recruit me to help him, but I’ll fully admit that I have an attention span of a gnat when it comes to tedious tasks.  I immediately take a sudden and intense interest in the laundry, the dishes, cleaning toilets with a toothbrush, organizing my sock drawer…you know, anything BUT that! One particular rainy weekend, two weeks ago, Adam was in the dining room working on his latest masterpiece. Lacey wandered in, sat down next to him,  and began to work on a section. Adam immediately says:

If Adam ( he sometimes still refers to himself in the third person) pushes Lacey back into a bunch of butter and locks her in the closet, what will mom do?

He’s obviously trying to tell her to ‘get the heck out’. As I am correcting him not being very nice, I have to admit that  I’m amused with the visual of Lacey being pushed into butter and locking her in the closet, wondering where on earth he devised this potential “punishment”. I mentally note his crazy imagination and I’m silently thankful that he at least warned me that he is contemplating a retaliation. Lacey gets up and calmly says:

“Ok, Adam. Let me know if you change your mind and want help.”  

Over the summer, I spent a full week with just the two of them, while my husband and middle son were in Cooperstown, NY for a baseball tournament. I was surprisingly stunned as to how “anti-Lacey” Adam really is. Over the course of the week, he presented to me, many potential scenarios; from pushing Lacey into the pool, throwing her off the boat into the Chicago river, and finally wanting to fly HER out to Cooperstown and bring Chris and Alex back home. Lacey just continued to shake it off, commenting that someday it will change. As much as I too know this, I can’t help but to feel sorry for her.

They say that you can always pick out a sibling of a child with special needs by their endless tolerance and compassion. As long as Adam continues to express his dislike for Lacey, she will still continue to agree to make detours past the Metra train station, always be ready for a nightly tickle monster, listen to him read the same book over and over, continue to subject herself to getting her butt kicked by Adam at Mario Kart, patiently answer his endless questions, and let him monopolize her phone in order to listen to his favorite Imagine Dragons song for the one millionth time. And she will NEVER complain when Culver’s is ALWAYS the choice for a family dinner.

I know for sure that Lacey wouldn’t trade her brother for anything in the world. I also I know one other thing  for sure….when life “pushes her back into a bunch of butter, and locks her in the closet”, she will come out STRONG;  because she is the sister, of a brother, with special needs.

My Hores are Moaning

Posted in Autism, Family, humor, kids, motherhood, Parenting, teens by

Adam’s first week of middle school with  is complete. Adam navigated his first 5 days without a glitch. 5 days down, 171 to go. I’m currently sitting on the sofa, writing, and breathing a sigh of relief….oh, who am I kidding, I’m actually sitting here diving headfirst into my second glass of wine. Tomatoes/tomatoes.

Adam says his favorite classes so far are math and science…no big surprise, for both of these classes are fairly concrete and have rules to follow. Adam loves rules. New to him are FACS classes (Family and consumer science…Home Ec for those of us who are a product of the 1980’s) His first class in this rotation is sewing. His first project; a drawstring bag.  As we were waiting in line at the fabric store on Friday night, with his chosen Chicago Blackhawks material in hand, I was counting my blessings that Adam has a wonderful paraprofessional, Mrs. H.,  that helps him to navigate his schedule and his day. On the other hand, I was thinking that this poor woman does not make nearly enough money, for the video that I have playing in my head, of my son operating a sewing machine, is nothing short of a bloody massacre. This is going to be a huge learning curve for all those involved.

As we continue to wait in line, I decide check his sewing project assignment one more time from my phone.  I scroll through Canvas, the on-line assignment program that our school district uses, and I happen to notice, much to my horror, that Adam has health class is first in his PE rotation. I’m now trying to fight the overall sinking and sick feeling in my stomach. Sewing and sex ed…all in the first month of school?  I silently promise Mrs. H, that I will start saving my spare change in order to send her on a fancy vacation accompanied by lots of tropical drinks that I KNOW she will need, come winter break, in December.

Any typical middle school boy dreads sex ed in middle school. But not Adam. His  mind does not allow him to understand embarrassment. He will march right into this class with the same pragmatic approach that he does with anything else in life. I often admire how matter of fact he is about everything and am often envious of this quality…..Until he turned 11 years old. Over the past 6 months I have had many interesting conversations with my son. His inquisitive mind, minus the inhibition, in combination with ‘who knows what’ is going on in his head, is a dangerous mix. For example,

Earlier this past spring, I was laying in bed with him,unfortunately fighting a headache, as he was reading one of his favorite chapter books to me. He stopped for a second and examined a crease in the middle of my forehead as he does occasionally. This time, however, instead of making a comment about my face being cracked, me being old, or some other blunt observation that he is so well know for, he just begins to rub it:

Me: Thanks buddy. That’s actually making my headache feel much better

Adam: Mom has a headache because why?

Me: I just have a headache.

Adam: Because why?

Knowing if I don’t give him a reason, we could potentially be having this conversation for a while; I decide to proceed with the old ‘answer-the-question-with-the-actual-terminology- and-reason-and-it-should-be-over’ trick.

Me: Probably because of hormones.

Adam: Mom’s ‘Hores’ are ‘moaning’ because why?

And with that, I quickly jumped out of his bed, turned off his light and ran for the hills. That was enough questions for the night!

-or-

The time that I came home from work one day and found Adam in him room playing on his iPad. I sat down next to him on his bed and proceeded to ask him about his day. He was immediately distracted by something on my shoulder. I look to my left and realized that my bra strap was showing. I cringed and braced myself for the parade of questions that I knew were coming:

Adam: What’s that white thing?

Me: My bra strap.

Adam: Mom’s bra strap does what?

Me: Girls wear them like an undershirt.

Adam: Or to cover the pointy things on Mom’s chest.

Me: Typically never at a loss for words, I feel my face getting redder by the minute, and am now frightened as to where this conversation is heading. I then reluctantly respond: “yes”

Adam: Otherwise what will happen?

Me: ummmmm…..I don’t know, buddy, you tell me.

Adam: Otherwise, if mom doesn’t wear that white thing, her chest is going to fall all over the ground. 

I sat there, really wanting to be in his head for just one minute, realizing that he does have quite the imagination. On the other hand, maybe it’s wishful thinking, because, for the record, if I did not wear my bra, my chest definitely WOULD NOT fall all over the ground!!

I still reflect on these conversations and continue to waffle on whether he even remotely understands anything about the birds and the bees. On the other hand, I’m completely convinced that for boys, bras, boobs, hormones, and butts are just innate and he 110% totally gets it!! Regardless, I’m thoroughly convinced that I will have more to worry about with Adam  than Alex, his brother, who turns beet red at the mention of the word “girl”.

So tomorrow is day #6. 170 more days to go. Mrs. H., I can’t tell you how much we appreciate you. For sure, you have your work cut out for you. I apologize in advance.

Meanwhile, I’ll be rubbing my temples, bracing myself for another week of Adam and middle school; anticipating headaches, and at the same time praying that my ‘Hores’ don’t moan too much!!

I love him with all my butt…..and my heart!

Posted in Autism, Family, humor, kids, motherhood, Parenting, teens by

So last night, I had this dream….

Adam and I are on big yellow inner tubes floating on the Chicago River going west. I’m using my hand to paddle while frantically trying to grab his hand so that we don’t get separated. Suddenly, big military ships start heading our way and I quickly realize that they do not see us. Somehow, I get us both over to the side and a black iron fence appears out of nowhere. I reach out and grab on to it and start alternating my hands while frantically looking back to see that Adam has a hold of my tube. Out of the corner of my eye, I notice a thick brown sludge start to swirl around us. I desperately try to paddle us out with my hands. We are eventually swallowed up into the sludge and….That’s it… I wake up.

I have been playing this dream over and over in my head all day looking for meaning; and suddenly it occurred to me. I was with Adam traveling up s*it creek without a paddle…..

Who has not felt this way at one time or another with their children? As my husband likes to remind me, after our third child, Adam, was born we transitioned from playing man to man to strictly a zone defense. As soon as one fire was extinguished, another one erupted. It’s life with kids, plain and simple.

Monday is the big day. Adam has had this date circled on the calendar for months. Never mind that we still had half a year of 5th grade to finish. He has been ready for a new chapter in his life to begin before the last chapter even ended. He spent the summer practicing creating “the flow” with an obscene amount of hair gel. He has decided that he is too old to take a bath and has switched to exclusively taking showers.He faithfully washes his face every night in anticipation of the non-existent pimple all because that’s what his older brother and sister do. He has even explored deodorant. On August 24, 2015,  Adam will officially be a middle school student. His next three years will be filled with pre-teens and teens jockeying for a spot on the ladder of social hierarchy. He will be entering a new world filled with cell phones, texting, social media, boys liking girls and girls liking boys. He will be entering a world in which where you choose to sit at a lunch table is probably the single most important decision and possibly the biggest disappointment and source of drama that a middle school student will face in the first couple of weeks of school. He will be surrounded by a new world of academics and demands that can send a young 6th grader into a tailspin of uncertainty. On Monday, Adam will be navigating this new experience. He is my third child to go off to middle school, but my first middle school child to charter these socially treacherous waters with autism. He is confident and ready; and as uncertain as I am, I couldn’t be more proud.

In June, as he excitedly walked out the doors of his grade school, I couldn’t help but feel a sense of sadness for we had been a family at that school for the past 10 years. Ferris Bueller once said it perfectly: “Life moves pretty fast. If you don’t stop and look around once and awhile, you could miss it.”  This statement couldn’t be more true;  I literally blinked and elementary school for all three of my children was over. My sadness, however, was quickly replaced by a huge sense of pride, for over the past 4 years, Adam defied the naysayers. He continued to prove that he could be successful in a mainstream classroom with the proper support, which I largely attribute to a wonderful and dedicated group of teachers and therapists that have faithfully stood by Adam’s side for the past 4 years. These wonderful teachers rolled up their sleeves, and went to the mattresses for our son, when we made the decision in the middle of his first grade year to move him out of his self-contained classroom back to a mainstream class. Adam has been on quite a unique journey; a journey that I know will continue to unfold. But just as each and every child is unique, each and every child with autism is unique. Just as he has been taught by many over his short life, he has taught many, many more.

You may be scratching your head and questioning…. ‘Tales From the Butt’ ?? This very, very, VERY long story has twisted, turned, evolved and has taken on a life of itself. Just as autism is very unique. My butt is Adam’s unique autism perseveration. He loves to talk about how big it is. (I’m 5’3″ and 120 lbs.) He often expresses how ‘boincy’ and bouncy’ it is. He loves to remind me that on May 4, 2014, he noticed my butt under a blue blanket, marking the date that his fascination with my behind began. He likes to imagine that I have train tattoos on my butt. He likes to pat it, talk to it and for whatever reason make the “mmmmmmm” sound by it. He has nicknames for my butt such as ‘hip hip hooray butt’ ‘engine butt’ ‘jazzy butt’ and my all-time favorite “found it at Costco butt”.  I have tried with all my might to understand why my butt is so interesting to him. Our discussions about his fascination circle right back to that infamous day in May when my butt caught his autism eye under that blue blanket. I have identified dates on the calendar marking the time in which he needs to stop talking about my butt…..with no luck. I’ve also tried to ignore his perseveration, but his intrigue with my booty is endless. As exhausting as all of this “butt talk” can be,  I am grateful for two things: 1.) Adam is only fascinated with my butt. 2.) He is a rule follower and therefore abides to my strict instruction that he may not talk about my butt at school or the principal will call me and he will be in “big trouble”.  I have put all of his teachers on “butt alert”. This was quite a unique and interesting conversation the first time I presented it in the “parental concerns” portion of the IEP meeting. In the end, even though at times I feel like I am only a butt to him, I’ve come to realize that my son’s fascination with my butt is his unique way of expressing that he loves me.  I have no choice but to find the humor in his unique and endearing way of displaying his affection. Therefore, I in turn, love him with all of my butt….and my heart!

And so, in two more days, I will have a sophomore, a 7th grader, and Adam will land at his new middle school as a 6th grader in his own unique blaze of glory. I’m excited for him to begin his new chapter. I will be right there along side him paddling west on the Chicago River, with ships coming straight at us, helping him to navigate this socially awkward time in his own unique way. I’m sure that there will be many, many more unique ‘Tales from the Butt’ to share.