Bouncing Back

“You punch me, I punch back. I do not believe it's good for ones self-respect to be a punching bag.” - Edward Koch 

I've been punched around quite bit in my life.  (Haven't we all?)  But since The Boy's diagnosis, those hits have always been the hardest to bounce back from.  It's because those hits give me this sense of overwhelming failure.  As if I haven't prepared enough for this moment - how can any expectant mother prepare for a special needs child?  

I understand why mothers quit their jobs.  It's all consuming.  And it never ends. Because unless you are extremely well off financially, your child's services are at the mercy of someone else.  And you always need to justify the need of service.  For every bit of progress a child makes, the likelihood a service will be taken away. Appropriate becomes an ambiguous word.

So this afternoon, as I made another promising phone call that ended up  being just a phone call, I felt like a Bozo the Clown.  Punched, pounded, the air kicked out of me.  Disappointed.  But most of all, defeated.

I can't help but wonder - how many phone calls will it take?  How many times can I hear: No, I'm so sorry; No, we can't help; No, try someone else.  How many times can a mother expect to be put on a waiting list?  And just wait.

I am physically tired.  I am emotionally drained.  I am special needs spent.  I am hoping this moment will pass.  Because I can't quit the job that pays me to devote every single waking second to my child. I will need to bounce back.  I have more phone calls to make.   

"What makes the muskrat guard his musk? Courage!"

"Put 'em up, put 'em up! Which one of you first? I'll fight you both together if you want. I'll fight you with one paw tied behind my back. I'll fight you standing on one foot. I'll fight you with my eyes closed..."


Going into meetings for The Boy, I always feel like the Cowardly Lion - I have the best intentions but there is always an element of fear and failure.  Because while I talk a good talk, I'm really a big coward.  I hate addressing a group.  I get shy and nervous and I can stutter and stumble over my words. During my first IFSP meeting, I learned that no matter how nervous I was, I had to put on my brave face and charge forward.  There is no place for fear. 


I also learned that you need to be prepared.  Going into my initial IFSP meeting, I had The Boy's evaluation in my hand - sections highlighted, pages tabbed, questions scribbled into the margins.  I knew it backward and forward.  And I was able to prove it when the EIOD suggested the minimum amount of services, I said "On page 9 of the eval it suggests..." - I got the amount of services I wanted.  


Since then, I've always been prepared to fight.  I've always armed myself with knowledge of the law.  So I wanted to share some of the links I've found that have helped me attain services for The Boy.  

1. Part 200 (Student with Disabilities) and Part 201 (Procedural Safeguards for Students with Disabilities Subject to Discipline) -- This has been extremely helpful; it is a PDF of the Regulations of the Commissioner of Education. (I found the link here.)  The document is long (about 200 pgs) but it's important to look through.  It goes through Due Process Procedures and the Board of Education Responsibilities and Definitions. I've noted sections in letters to CPSE administrators.  Let them know that you know the law. Please note there is a  disclaimer: These Rules of the Regents and Regulations of the Commissioner of Education ("regulations") are unofficial, and are presented for general informational purposes as a public service. 
2. "Creating a Quality IEP" - Individualized Education Program Manual  -- Another long document, but it takes you through the requirements and roles of the IEP.  As a the parent, you are an equal part of the IEP.  Sometimes I think administrators forget that and see you as a more of a formality rather than a voice.  Never forget that you have as much of a say as they do. You know your child best.  You've seen your child in every enviornment: school, home, with children, alone, with therapists.  You have an advantage that no one else in the room has.  
3. Advocates for Children - Turning 5: A Guide to Transition from Preschool Education to Kindergarten -- This document is about 30 pages and walks you through the process.  The document also lists the contact information for CSE within the 5 boroughs of New York City.  Advocates for Children can also provide legal service for families - however, services are based on financial need. It is my understanding that a family of 5 needs to be in the 50,000 annual income range.  Please note there is a disclaimer: This guide does not constitute legal advice.  This guide attempts to summarize existing policies or laws without stating the opinion of AFC.    

I also strongly reccommend purchasing Wrights Law From Emotions to Advocacy 2nd Edition -- this book is a MUST HAVE.  It offeres suggestions and provides letter samples, goals and suggestions. When Norrin aged out of EI (Early Intervention) and transitioned to CPSE (Committee of Preschool Special Education) I was told that home-based services were impossible to get under CPSE.  I fought for them, it wasn't easy.  But with the above referenced resources, I was able to justify the need for service. 


So it's okay to be scared.  That's normal.  I still feel nervous walking into a meeting.  But I always walk in prepared and that gives me a sense of courage. 
  

"I amuse you? I make you laugh...?"

I can laugh at almost anything.  I like to joke around and I think I have a good sense of humor.  I'm not even afraid to laugh at myself.  But the other day when I called the New York State Bar Association, I wasn't expecting laughter.  


Since The Boy's Turning 5 meeting is coming up (sometime soon, who knows when) I am trying to find an attorney who will take our case at a reduced rate or (fingers crossed) pro bono.  An attorney at work suggested I call The Bar.  So I did.  This pretty much sums up on conversation.  


Me: Hello.  I'm hoping you may be able to provide some assistance...
(Blah blah blah, summed up my situation.)


Her: That's so funny.  A woman just called yesterday with the same situation.  'Money was no object,' she said.  The school she wants to son to go to costs $43, 000 - what a waste of money. Can you believe that?


Me: Um, yes.  I can believe that, the school I'm applying for is $93, 000 per year--


Her: Why so much money?  They have good public schools for autistic kids.  Such a waste of money...


Oh, I'm sorry - Did I call the Board of Education or The New York Bar Association? But thanks for letting me know your opinion.


Me: There really aren't.  So as I was saying - I'm looking for an attorney who would possibly take my case at a reduced rate  or pro bono.  


And then she laughed. LAUGHED!  Like I was Comedy Central on a Saturday night funny.  


Her: Oh no - we only have one attorney that does Special Education and he charges $450-$500 dollars an hour.  And the the first question he asks the client is 'Do you have the money?' If you don't have it, he won't waste his time. But he's such a great guy, really nice - good attorney if you can afford him.


Really lady?  Cause he sounds like a jerk attorney.  Sorry - I'm still a little bitter. 


Me: So would you be able to refer me to any one else?


Her: HA! You have no money.  No one is going to help you.  You're on your own.


I said thank you before hanging up.  I won't write all expletives I mumbled under my breath.  And then I printed out all the CLE materials on Special Education on the website. While I'm not prepared to give up my search for an attorney I can truly afford, I am prepared to really do it on my own, if I have to. 


I like to believe that parents are the best advocates for their children.  That no matter what a piece of paper says, a parent will know what their child needs.  And I also believe that if a parent has the right tools, knows the law and can articulate the argument - a judge will listen.  I need to believe that.  That when the time comes, the person in authority will take me seriously. 


I also believe that one day I will look back at this and laugh. Or at least, that's what I hope.   

Appreciation, Rejuvenation: A Mommy Moment in AutismWonderland

You thank your child's team of therapists and teachers.  You profusely thank the person who offers their seat on the subway.  You thank the person who bags your groceries or pumps your gas.  You even thank your kids for eating  with no fuss or your baby for not squirming during a public bathroom Pamper change.  Your days are filled with thanks...for everyone else.

But when was the last time someone offered thanks for you?  Parents and caretakers are often forgotten, happily performing a thankless job day after day, hour after hour, second after second.  

Pampers, partnered with Bethenny Frankel, have just launched its Gifts to Grow Incentive Program.  The program is Pampers way of saying, Thank You.  Recognizing all the unsung heroes who are committed to providing the very best for their babies and families.  With each Pampers purchase, points are accrued and redeemable for other desired products (educational toys, books) or charitable donations. 


To celebrate the Gifts to Grow kick-off, Pampers and Bethenny hosted a Mom Rejuvenation Day at Oasis Day Spa on Park Avenue.  For a mom who doesn't know how to relax or take a moment out for myself - this was an absolutely wonderful treat.  After a much needed massage (my very first!) and manicure, I relaxed for a bit with Bethenny.  

Bethenny stated that Pampers is a “superior” brand and it’s the “best product” for her daughter Bryn.  As for the baby wipes - they are multi-functional.  Bethenny uses them on “everything from the kitchen counter to my baby’s bottom to removing my under eye make-up.”  To be rewarded for purchasing high-quality products, she says, is a “win-win!”

with Bethenny

I couldn't agree more!  Since The Boy was born, I've been devoted to Pampers products. As a mom of a special needs child (and CUNY grad student), I spend a lot of money on my family and budgeting is always an issue.  Given the economy, I think it’s amazing that Pampers is giving back, truly appreciating the every day unsung heroes.  Gifts to Grow makes it possible to afford a trusted product without the burden of sacrifice.

Registration for Gifts to Grow is easy - just log on to www.pampers.com and click on the Gifts to Grow link.  The wonderful rewards are worth it.  

*The services were complimentary; expressed opinions are yours truly.

Through the Looking Glass: Yesterday at the Rotary Meeting [12/22/10]

From Mission of Complex by Jeff Katz  

Nate is on Christmas vacation from SUNY-Cobleskill.  He’s been hanging around, watching TV and drawing.  Karen was also free yesterday, so they both met me at The Otesaga Hotel, the official headquarters for the Cooperstown Rotary Club’s weekly lunchtime meeting. Nate put a black polo shirt on over his red Duff Beer tee and looked quite presentable.

During the opening ceremony, Nate held up fairly well. The invocation was a bit lengthy, and in a low voice I heard him say “When is this dumb thing going to be over?” He put his head on Karen’s shoulder to rest. The Club always sings a couple of old chestnuts, and Nate put up with that with great fortitude.

Small town living has its plusses and minuses, but a big plus is that most people know or have met Nate and accept him. But yesterday, I had a very hard time; Nate really stuck out and it bugged me. His constant humming as he ate his usual starchfest – three rolls and a heap of mashed potatoes – seemed excessively loud to my ears, though no one paid any mind. As usual, Nate spent much of the time talking to himself, his monologues punctuated by uncontrolled giggling at the nonsense notes he created on his iPod touch.

He left for the bathroom during the presentation on Cooperstown Holiday history as seen through one of the Village newspapers, The Freeman’s Journal. He was at the dessert table by the dining room entrance when the crowd laughed at an old-timey anecdote. As is his habit when he hears laughter, Nate raised his right arm and blew a Bronx cheer on his forearm, followed by a yell.

Our Rotary is by no means a solemn group; there’s always lots of kidding and joshing going on, often quite funny, but I was unnerved. I kept checking in with him (“Nate, you doing good?”) but in my mind I could see myself in an alternate universe dragging him out of the meeting with him screaming “I don’t want to go.” I kept under control, though always at a tense simmer.

After another trip to the dessert bar, Nate returned with a slice of peanut butter pie. I watched transfixed as he pantomimed eating with a strange series of fast dips of the fork, coming up with nothing. He soon got down to the serious task of finishing up.

When the bell rang signifying the end of the gathering, Nate exclaimed, “What the hell was that?”

“It’s over Nate,” I exhaled with relief.

“Yea, Cooperstown Rotary Club!” Nate chimed happily.

Though he  was his usual self, full of offbeat, harmless, actions, I was pleased that he wasn’t rude. This is not a group that appreciates off-color material and Nate can curse a blue streak or say the most vulgar things. He saves that for home and this morning he came up with a classic. (Don’t read further if you’re sensitive to inappropriate subject matter).

Nate sat next to me at his computer and perked up upon hearing a Marc Bolan tune, “Dandy in the Underworld.”

“Hey, what year did zees come out?” he asked in the German accent he occasionally uses. T. Rex was still playing in the background.

“1977.”

Now, Nate does a lot of word replacement games, and one involves substituting the number seven with a certain bodily fluid.

“You mean, nineteen-sementy-semen?”

Nothing out of the ordinary there, at least for Nate, but he must’ve realized the bonanza of his double usage.

“The year for ejaculation,” quickly followed.

Completely hysterical and I love him for his facile wordplay and humor, but I was very glad he didn’t blurt that out at Rotary!

Dealing with Diagnosis

The week The Boy was diagnosed, it seemed as if everyone had something to say.  Some words of wisdom or piece of gossip column advice from people who had no idea what we were going through.  At the time, we didn't know anyone who had a child with autism - no one to truly tell us what we were in for.  


Some of the things we heard was:


"It could be worse."


"It's really not a big deal." 


"Whatever doesn't kill you, will make you stronger."


"God doesn't give you anything you can't handle."


"He (referring to The Husband) just needs to get over it." This was told to me by an in-law.  She's now dealing with her own son's diagnosis and from what I hear is having a difficult time.  "Getting over it," she is learning is easier said than done.  


And my personal favorite, "The Boy's not going to die from Autism and neither are you." This was told to me by my best friend of more than 15 years. We are no longer friends - but that's for another post.


Those first few months were difficult. I did a lot of crying. There was a lot of uncertainty. And I felt like my home was no longer my own.  With therapists coming in and out.  Our work schedules changed, our life style changed.  I used to go out after work with friends, gossip on the phone - after The Boy's diagnosis that all stopped. Our life revolved around The Boy and therapy. I couldn't justify going out - what if I missed something?  There were people in our lives who couldn't understand why we no longer had time.  And we learned who our friends really were.  


In retrospect, going into seclusion probably wasn't the best thing.  But we all deal in our own way.   


I would tell any parent dealing with a new diagnosis to just take it day by day. That there is no time frame for acceptance. Not to let others dismiss their feelings of loss.  And not to succumb to guilt - you'll drive yourself crazy.  Then I would tell them to be strong.  You can advocate for your child in the morning and cry in the afternoon (because it is okay to cry and feel sad).  That if you need to scream - bury your head in a pillow and scream (I did this a lot).  I would also tell them that it gets better. Maybe not easier, there is always something to fight for - you just get better at fighting. I would also let them know that there is joy to be found in every day simplicity.  Never allow your sorrow to overshadow those moments.           

Autism Ain't Cheap

I always knew being a parent wouldn't be cheap. But during my pregnancy I wasn't thinking that I'd be the parent of a special needs child. Those just aren't the things you think about. You think about music lessons and sports or dance lessons and ivy league colleges and all the opportunities you never had.


And then the day comes when your child is diagnosed. Then it's speech therapy, occupational therapy, physical therapy, ABA, home-bases services and center based services.  And unless these services are mandated on your child's IEP - you'll feel compelled to pay for these services out of pocket.  And that gets expensive -- therapists can charge any where between $80 - $300/hour.  Most insurances won't cover these services or evaluations.  Navigating the loop holes of insurance policies is like finding your way out of a labyrinth - blindfolded. (Here's a link how on to get your insurance to pay - Click Me).


Since the diagnosis in 2008, we've spent a lot of money on The Boy.  First we had to repaint his room to a calm "Winnie the Pooh" green.  Then the services begun. Any toy or device that the therapist recommended - we bought.  A peanut ball, weighted vest, scooter board, balance board, hopper ball, a foam balance beam, hand puppets, puzzles, every kind of flash card you can imagine - I could have turned our apartment into a therapy gym!  (Fun and Function is great and inexpensive!) 


Never mind every book on autism you can imagine. Starting the diet, organic, all natural foods.  Children's books - The staff at Borders know me by now.  And specialized toys for fine motor - every toy needs to have a purpose.  


In 2010 we spent $1,700 on a BCBA social play group.  $6,000 on a private neuropyschological evaluation.  $300 on a special education consultant.  $200 on school applications - for kindergarten placement. I won't factor in the cost of an attorney or advocate - that's for another post. For those not great at math, that's $8,200 on Autism - in 1 year. (We are lucky that some of this money, I was able to get reimbursement from my insurance.  Still, this money was spent unsure if reimbursement was an option.  It had to be done.)   


We're not rich - not remotely. We don't have a trust fund. The husband and I both work regular jobs.  I'm just a secretary. The husband worked as a FedEx courier for 20 years and just recently moved on to something else. We struggle constantly with the mortgage and our bills and live pretty much paycheck to paycheck. And I'm a graduate student and The Husband is ready to return to school also.  I lay awake at night.  Thinking about the financial stability of our future - of The Boy's future.  And I wonder if all the money we've spent is worth it. I have to believe that it is.


I think about the families who take out second mortgages on their homes to pay for therapies or appropriate school placement, or charge attorney fees on their credit cards, take out loans on their 401k plans or borrow from family and friends (I'm guilty of the last two). And I wonder how far I'm willing to go, to make The Boy's life a little bit easier - to get him the services he needs, to guarantee the most appropriate school placement.                  

“Don’t tell me where your priorities are. Show me where you spend your money and I’ll tell you what they are.” -James W. Frick   

                 

 

"He's Shy..." Um, yeah - that's it.

"He doesn't look like he has autism." 


If I got a nickel for every time I heard that, I wouldn't need to worry about paying an attorney to sue the Board of Education.  I'd have the money in the bank.  


Autism doesn't look like anything and unless The Boy is flapping wildly, it would be hard to tell that anything was there. He looks - for lack of a better word - "normal." And Autism is often mistaken for something else. 


Yesterday while on the bus to Sensory Gym an older woman started talking to The Boy.  Aside from the fact that she kept referring to him as a little girl, she kept asking him questions.  You know, "What's your name?"  "How old are you?"  The Boy looked everywhere else but her.  


"She's shy," she said patting him on the knee.  


"She's a Boy," I smiled.                          


We laughed.  And I let her believe that The Boy was shy. What was the point of explaining to her when I was stepping off in two stops.  

But I get that all the time.  The Boy has the kind of face that makes you smile. (I know, all moms say that about their kids.) And our interaction together, his laugh, his smile - makes him the kind of child, grandmothers want to engage.  Though he's not always willing to engage them.  Making him appear shy.  I know that's not that case.  But I let strangers believe it.


Should I use these moments to teach awareness?  Or just let the moment pass, protecting our privacy?  What do you do?    

                        
 

                 

Milk & Bread: Food Staples or Enemies of the Table

This morning The Boy asked for milk – demanded, is probably the better word.  We ran out of milk last night and I was too tired to run out and get more.  I don’t drink milk, and The Husband only drinks it with cookies.  But The Boy – he can drink it all day long.  Guzzling it straight from the carton (I know, kind of gross – we’re working on that).  There are mornings when I wake up and find the refrigerator door open – the gallon of milk on the floor with the top off.  And I know at some point during the middle of the night, The Boy woke up, walked to the kitchen, gulped down some milk and went back to bed. 

Whenever I see him chugging his milk like a frat boy chugs beer, I can’t help but wonder if I should’ve have stuck to the GF/CF diet. Is milk doing his little body good?  Or is it holding him back from further development? [According to one theory, some people with autism spectrum disorders cannot properly digest gluten and casein, which form peptides, or substances that act like opiates in their bodies. The peptides then alter the person's behavior, perceptions, and responses to his environment. Some scientists now believe that peptides trigger an unusual immune system response in certain people.] 

A few weeks after his original diagnosis (May 2008), I decided to try the diet.  I went through my kitchen cabinets, cleaned out my refrigerator and went on a food shopping spree.  Do you know what food products contain Casein or Gluten?  EVERYTHING!

I read the nutrition labels of packages and opted for organic and all natural ingredients.  So I replaced regular milk with Almond, Soy, Rice & Hemp – unsure of which The Boy would prefer.  I purchased Tofutti (dairy free) ice cream and Gluten Free cereals.  And eliminated a staple from his diet: The Peanut Butter and Jelly Sandwich. 

Starting the diet was expensive – do you know how much a tiny carton of almond or rice milk costs?  And living in the Bronx , GF/CF products were not only harder to find but more expensive. (Though, now as my neighborhood is becoming gentrified - there are more GF/CF options.) So I found myself food shopping in the city during my lunch hour and lugging bags home on my way home from work.

I wish I could say that starting the diet was the hardest part.  But have you ever tried convincing an old school Puerto Rican grandmother that milk/milk products and bread needs to be eliminated from a child’s diet? 

My mother and I disagree on a lot of things – almost everything.  But this decision made Carmen crazy.  (I often refer to my mother as Carmen, though not to her face – I’ll get slapped.) 

“What do you mean no milk and bread?  He needs his milk.  You are taking away all the things he loves!”  She yelled. 

“He’s two Mother.  He doesn’t know what he loves.”

“Hmpf…we’ll see.”  And I knew this meant that when he was with Abuela, she would give him whatever he wanted – gluten free/casein free or not.

At the time, no one was supportive of my decision of going GF/CF.  Not our pediatrician, not the ABA therapist, not my mother, some friends. 

So after a few months of doing it (kind of half-ass), I gave up.  He was making strides with the Early Intervention therapists and was about to start a center based program.  And I didn’t know if his improvement was due to the therapy or the diet.  So we went back to milk, ice cream and gluten filled cake.  And secretly, since quitting I’ve carried this guilt around, feeling like a mother failure. 

Like all else Autism – there is so much debate and nothing truly conclusive.  Ask five different moms/doctors/therapists and you’ll get five different answers.  So what is a mom to do?  Give it another go?  I know that if I decide to try it again, I need to give a full six months and document the results.  And now that he's older and knows exactly what he likes and doesn't like - it will be so much harder.  Am I ready for that?  Am I selfish for not willing to commit and try again? 

Would love to hear your thoughts/stories on living GF/CF!

Through the Looking Glass: Like Two Ships Passing in the Night

written by: Marj Hatzell, otherwise know on the Internets as The Domestic Goddess. 

Getting my boys to interact is like putting pantyhose on a goat, as my mother-in-law says. In terms of functioning and autism, they couldn't be further apart. Luke, who is currently ten-and-one-twelfth (That is very important, that one twelfth, and is much different than JUST TEN) is in the higher-functioning range with a diagnosis of PDD-NOSE or Asperger's depending on the weather that day and which doctor we are seeing. Ian, who turned eight just after Christmas with very little fanfare (just the way he likes it) is considered severely-to-profoundly affected. While Luke is above grade level, attends his neighborhood elementary school and quite verbal (and reads the dictionary! FOR FUN!), Ian is largely non-verbal. When we hear a word out of Ian, it's usually, “NO.” When asked to pick something up or, “Uh-oh!” when he is throwing a glass down the stairs. Because, you know, tossing it down to the basement is an accidental. Ooookay. Sure.

They couldn't be more different even though I was due on the same day in December (count back nine months, Irish people, and you can figure it out), are two years apart and they were nearly identical in terms of development before the age of two. One day Luke began to speak. Ian never did. We'd hear a word once in a while, like “SH*T” when mommy dropped a chicken (he said it for three hours. Awesomesauce) or “Choo-choo.” while watching Thomas. For the nine millionth time. But that's it.  And Luke? Let's just say he isn't reticent. No, I think they have a term for this. Diarrhea of the mouth? Jabber Jaws? INCESSANT CHATTER ALL DAY AND NIGHT? Yeah. That.

The toughest part about raising two boys with autism (and ADHD, OCD and a variety of other acronyms) is that getting them to communicate with us is difficult enough. Adults? No problem! But other kids? Each other? Nearly impossible. They might as well be the North Pole and the South Pole. They are like two ships passing in the night. A glimmer of recognition once in a while but don't expect them to warn you about that iceberg you're about to hit. And we all know what happens when you hit an iceberg. Leo DiCaprio drowns. OH NOES!

So. Where was I? Titanic? Disaster? Oh, right! Interaction! We're basically raising two only-children. Or roommates who work different shifts. Ian obviously works nights because he's up every freaking night. But playing together? It can happen. If we orchestrate it. Look at each other? If we say, “IAN. LOOK AT LUKE.” Circles of communication? HAHAHA! You're so funny! But we try. And we'll keep trying.  A friend once gave me an awesome suggestion. She said, “Don't get them things when they ask for them. Make their sibling get it instead! Forced interaction!”  And it works. They will go to one another now if we're not readily available. So, progress. I'll take it in any form.

We know something is working. One night I was in tears talking to Luke because he was so sweet. When I went in to tuck him in, he asked me what would happen to Ian when we died. Luke was confident he'd go to college and MOVE RIGHT BACK IN, MOM. He knew he'd live on his own someday. But Ian? Grim reality. I explained the concepts of group homes, independent living situations and the like. He wasn't happy about that. He was quiet for a moment and said, “Don't worry Mom. You and Dad don't have to worry. I will take care of Ian forever. We'll be just fine.”

Yup. They sure will. 

~~~~~~~~~~~~~~~~~~~~

Marj Hatzell, otherwise known as The Domestic Goddess, is a Domestic Engineer, Total Babe and SAHM to two boys with autism, ADHD, OCD and a variety of other acronyms. She was a band geek in high school, lives vicariously through computers and prefers dogs to people, which means she has STELLAR social skills.

Her writing has also been featured in  The Stir, 5 Minutes for Special Needs, Thinking Person's Guide to Autism and of course, her very own blog, thedgoddess.com.
                  

"I'm Mad at the Dirt"

"...your room looks like some two-dollar-a-week furnished room in some two-bit back street town in Oklahoma. Get up. Get up. Clean up this mess." 

~ Mommie Dearest

I grew up in the kind of home where you could eat off the floor any day of the week.  My mother worked hard to keep not only a neat home, but an immaculately clean home.  No prints in the mirrors, wood furniture polished with Pledge, our rugs always streaked with fresh vacuum lines.  And dinner always made by 6:30. She cleaned as she cooked -never burning a meal- and she never went to sleep with dishes in the sink.  I don't think I can remember a day when she didn't clean.    


So I know that when she comes over every day to take care of The Boy, it drives her nuts  looking around my apartment. But let's get this clear, I'm not dirty.  Not gross, roach infested or anything like that. I'm messy and yes, there are times when the dust is so thick I could autograph my furniture.  I only clean what needs to be cleaned: the kitchen & the bathroom.  (And Norrin's room - his room is the best room in the joint.)  Our clothes are always clean, though not always folded in there drawers.  And the garbage always thrown out.


But dusting, mopping? I can't keep up. I have three to four pairs of shoes out at at time (those are just my shoes).  Piles of books laying around. Magazines - don't throw those away, I'm going to read them!  And toys, toys, toys - in every single room. There just aren't enough hours in the day.  And after I come home after a long day of  work or school or The Boy's sensory gym - do I want to pick up a broom & mop? Not really.  So I stick to the basics. 


And the weekend's go so quickly.  There's laundry and food shopping and cooking.  Or an appointment, an errand or a play date.  Or I'm just so damn tired from working all week - do I want to clean?  Do I have to?     


So this morning I forced myself to clean - dusted actually.  Because staring at the thickness of it while on the computer makes me feel guilty.  When I am in the moment, I clean with such vengeance Mommie Dearest would be proud.  Scrubbing, scouring on my hands and knees, working up a sweat.  My hands in scalding water, wringing out rags. Really cleaning, moving things out the way - not cleaning around the dirt and dust. And I feel like a better mom because of it. Dusting makes me feel like I've truly have everything under control. When finished, I sat back, admiring the shine of my furniture and stereo equipment, the gleam of my floor.  Everything in its place. 

And then I heard the crash in The Boy's room.  His high-pitched giggle.  Barefoot, I stepped on a miniature army man walking to his room.  His bin of legos dumped out on the floor.  Every book from his book shelf pulled out.  His bowl of cereal also on the floor, crushed crumbled flakes all over.  His train set out.  His sheets rumpled. He smiled. "It's a messy room!  The Berenstain Bears and the Messy Room. By Stan and Jan Berenstain."  It's his favorite book of the month. 


And then I remember the real reason I resist cleaning.  

      
                        
 

Resisting Kisses

The Boy is a biter. 
A hitter. 
A licker. 
A pincher. 
A squeezer. 
A hand-flapper. 
A climber. 
A jumper.  
A negotiator. 
A manipulator.  
A MASTER manipulator.


I realize this just a few moments ago. When Joseph walks into The Boy's room and finds him climbing up the book shelf.  


"GET DOWN!" Joseph yells.      


Joseph isn't a yeller. He's good cop. I'm bad cop. The roles just come naturally.  So yelling - that's my job (the neighbors must love it). The Boy starts to cry. Not just cry.  SOB!  As if someone is cutting off his limbs with a butter knife. The tears are falling down his face, snot is running down his nose. His little chest is pumping up and down and he opens his mouth to talk but can't control his crying long enough to get a word out.  


The Boy wraps his arms around Joseph's legs. "Pick you up.  To hug you." (The Boy gets 'you' and 'me' confused)


So what does Joseph do? He picks The Boy up. I watch from the end of the hallway, shaking my head. Sucker.


The Boy puts both hands on Joseph's cheeks and kisses him. "Daddeee.  I woove you." 


I had to walk away. Even though I wanted to go up to The Boy and give him a kiss and a hug for spontaneously saying something so completely appropriate.  Resisting kisses. That's what the bad cop has to do.    


 

                       
 

(S-O-S for Parents) Best of the Best, Edition 2: Social and Play Skills

Danette M. Schott, M.A. is founder of S-O-S Research - providing guidance and resources for parents. Danette's blog SOS-Research features various bloggers in the monthly Best of the Best series. This month's topic was Social and Play Skills.  I am incredibly proud that one of my posts is included in the Best of the Best series!  Below is Danette's description of Child's Play:       

Social Interaction. Lisa Quinones-Fontanez presents Child’s Play posted at Autism Wonderland. Lisa observes her son in numerous social situations and his inability to engage in play activities with other children. She shares, "It hurts because I feel like maybe he’s missing out on something special. That he’s being cheated out of the joy of just being a kid."