Thursday, September 30, 2010

Norrin & the Royal Flushing Privies

Ren Fair 9/25/10
 Last Saturday, we ventured off to Renaissance Fair in Tuxedo, New York.  As we got ready that morning Joseph asked, "Hey babe, should I put a pull-up on Norrin?"  I just looked at him. "You do know that at some point we're going to have leave the pull-ups behind," I say, not really answering his question.        

We have been potty training for almost two years.  And in the last few months, he's been doing really well with minimal accidents.  I smile with pride when I hear the clopping of his flat feet down the hallway to the bathroom as he clumsily throws up the toilet seat.  I peak from behind the wall, watching him stand there wriggling his little fingers in front of face and listen as he hums or repeats lines from his favorite cartoon or books.  Absentmindedly, he rolls all the toilet paper down, ripping off long strips, crumpling them up in his hands only to toss the thick wads into the toilet, sometimes waving the paper around inside the bowl and that's when I run in and say "No!"

It was a long drive from the Bronx up to Tuxedo. When we finally reached the parking lot I realized his shorts and t-shirt were wet.   We changed Norrin in the parking lot within seconds.  Shamefully, I admit putting Norrin in the pull-up I snuck in my bag before leaving the apartment.  

I asked the parking lot attendant where the bathrooms were.  "Well there's one real bathroom, right over that little bridge - just before you go into the park.  Inside, only The Royal Flushing Privies," he said.

The "real" bathrooms were medieval: dull lighting, clogged toilets, empty rolls of toilet paper and dirty floor tiles cracked and missing.  (It was only 11 am and the park had just opened.)  Navigating that bathroom with a sensory kid like Norrin was not easy.

Shortly after lunch, Norrin started to pull down his pants - right in front of The Washing Well Wenches.  "Have to pee pee," he said.  "That's good asking for the potty Norrin."  I smiled at him, though for a brief moment, I wished he just went in the pull up. But he said it so clearly and so spontaneously and so appropriately that I had no choice.  We were on the other side of the Fair, and it was quite a walk back to the Royal Flushing Privies. I grabbed his hand and dragged him across the field.

The Privies were three rows of port-o-potties.  I wished I had anti-bacterial.  I took a deep breath and opened the door to the handicapped port-o-potty.   I held both of Norrin's hands with my right hand while pulling his pants down with the left.  "Stand still and do pee pee."  As soon as these words left my mouth, I knew I would regret them.  We were standing in a small puddle - of what, I could not think about.  And I was wearing flip-flops.  Norrin looked up at me and smiled.  Then he stomped his feet and the puddle of mystery water splattered all over my bare feet.  I couldn't look down.  I focused on Norrin using the potty; he had asked me without any prompting.  It was my small price to pay.     

Joseph & Norrin at Ren Fair 9/25/10

Monday, September 27, 2010

Easy Rider

Norrin on his big wheel
When I was about six years old, my mother tried to teach me how to ride a bike; it was my older brother's bike and she had put the training wheels back on.  I didn't even make it down the block, as soon as she let go, I fell over, scraped my knee and I haven't been on a bike since. 

Norrin's first bike wasn't a hand me down.  Joseph and I were very excited when we bought him his first tricycle - it was shiny red old school Radio Flyer.  It had a handle bar so that we could push him.  Norrin liked sitting on the bike, but we did the pushing while he let his sneakers drag across the pavement.  He didn't seem to understand the concept of peddling. 

This was in 2008 when Norrin was starting his ABA services (15 hours a week).  That summer, it was me, Joseph and Gen (our ABA therapist) all outside trying to teach Norrin how to peddle.  But he would get distracted or tired and he didn't have the strength in his legs to peddle.  When the months got colder, we practiced in the hallway. 

After a while, he outgrew the tricycle and we ordered a big wheel.  I was so excited; I thought for sure this would be easier for him.  When we put it together, we realized, he was too small to ride.  It stayed in the corner of our living room, for over a year.  Every so often he would go over and sit on it, putting his feet on the peddles but never really moving.  When the weather was nice, Joseph and I would take it down to the front of our building and take turns pushing him - but after a few minutes of bending and pushing, our backs would hurt and Norrin was more than happy running off to the park.

This past spring, I was determined to make him ride the big wheel.  We took him outside and he started peddling - all on his own.  Every so often he would get distracted and crash into something.  But I figured - who cared?  He's peddling, finally!  The steering can come later.  (Check it out - Norrin riding his big wheel )

Now when we take him outside, I have to jog to keep up with him.  Though he still gets distracted and starts to flap when he sees the bigger kids whizz by on their skateboards and razor scooters.  He showed so much interest in razor scooter, that we bought him one.  It's in a corner and every once in while, Norrin stands on it and says "go."  He doesn't have the balance and coordination to maneuver the scooter just yet - I know that he will.  And it will be worth the wait. 

To Flap or Not To Flap (4/7/10)

Norrin eating a cupcake (cupcakes are flap worthy)

Months before Norrin was diagnosed, long before autism was even a thought in my mind - I would watch Norrin standing in his play-pen or exersaucer as he jumped up and down flapping his arms and hands. I encouraged it and often laughed with amusement, thinking it was the cutest thing ever. I thought he was imitating the "Little Einsteins" conducting music or Zee the owl (Moose A. Moose's friend) flapping his wings.

But after Norrin's second birthday, when he wouldn't (or couldn't) point or wave or speak - I started to ask questions, do research and begin the evaluation process. And then I learned that the adorable hand-flapping was a self-stimulating behavior associated with autism and other developmental disabilities. Immediately I wanted him to stop. I remember trying to hold his arms down whenever he flapped, feeling his little body tense up as I told him "no" or "be still." The stimming became priority number one, and I wanted every therapist that walked into our home to work on eliminating that behavior. Our ABA therapist, said she would do her best but that the stimming was often the hardest thing for kids on the spectrum to overcome.

We spent the next year, trying to get Norrin to stop - the phrase "quiet hands" was constantly repeated. Whenever I took him to the park, he'd run around, get excited and start his flapping. Last year we took a drive to the Stepping Stone Children's museum with the ABA therapist and her seven year old daughter, when the little girl saw Norrin flapping, she turned to her mother and asked "Why does he do that?" She's not the first child to question Norrin's behavior. Just last week, a little boy asked me "What's up with Norrin? Is he okay?" And there I stood, completely dumbfounded by a six year old boy's question.

There are various opinions regarding self stimulating behavior. Should it be eliminated? Redirected? Or ignored all together? (Even me and my husband disagree on the issue.) I'm at the point where I don't care if Norrin flaps - who is it hurting? I don't encourage it like I used to, but I don't try to make him stop when he does; unless of course, I need him to complete a task, only then do I redirect him. Truth be told, sometimes I join him. I sit next to him, put my hand in front of my eyes and wiggle my fingers or flap my arms or hands. I can understand why he does it, it is somewhat calming.

The way I see it - we all do something that doesn't make sense to anyone but ourself. Some people bite their nails or twirl their hair. Some people whistle or hum. My husband paces back and forth whenever he's on the phone. I say "huh," even if I've heard the question, and I like to arrange books in size order and I need my hangers to face all one way.

And my Norrin flaps his hands when he's excited. Why should I make him stop, just so that he may be socially accepted? Why should children or adults on the spectrum be conditioned to change to gain social acceptance? Why can't society adapt? April is Autism Awareness Month - Parents, I urge you talk to your children about autism and/or children with disabilities. Because children who accept and understand, grow up to be adults who accept and understand. Parents of children on the spectrum spend a lot of time teaching them to pick up on "typical" social cues, shouldn't parents of typical children teach their kids to pick up the social cues of children with special needs?

Norrin at his school birthday party 1/20/10 (he wiggles his fingers when he gets excited)

Child's Play (3/5/10)

I remember going to the park as a child – walking up to another kid and just asking “Hey, wanna play?” and off we would go. Instant friend, it was that easy. It’s probably one of the things that adults envy about childhood – the ease and simplicity of friendship, of playing without a care in the world. It seems so basic, so natural. At least to some.

I watch Norrin in the park. From afar, he looks like every other kid – running, laughing, playing. I watch as children try to include him and I try to be his voice – the mediator, even though he sees right through them - completely unaware that these kids want his attention. I watch as they quickly lose interest in him and I try not to let it bother me. Because I realize that maybe it doesn’t bother Norrin, the way that it bothers me. Maybe bother is the wrong word - hurt. It hurts to see children walk away from Norrin because they don't understand him. 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.

On days that I go to Norrin’s school, I watch as he points to each picture on the wall and listen as he tells me the names of his little classmates – yet he does not bother to play with them or look in their direction. They are just pictures on the wall to him. His teachers say it’s his socialization that’s holding him back. And I can’t help but wonder – how do you teach socialization? How do you expect children to socialize with children who don’t want to socialize?

At the sensory gym – I watch as Norrin enters the room. He acknowledges the OT by name. She prompts him to say hi to Nick (the other little boy in the room) and he does. Norrin likes Nick and Nick likes Norrin. yet neither boy makes eye contact even though the two therapists in the room try to get them to interact with the other.

I sign Norrin up for a Social Playgroup – they meet on Sundays for about 2 hours for the next 16 weeks. I watch through the glass wall as the therapists teach them to play group activities – like tag and soccer. (It seems strange doesn’t it - teaching a child how to play.) The therapists prompt the children to cheer and clap for each other. And I find myself cheering along with them even though I know they can’t hear me. I watch as one therapist jumps up and says "come catch me" as she runs around in a circle. All the children stare blankly at her, including Norrin, until another therapist prompts the kids to get up and run. At the end of each activity they organize the children in a circle – use hand over hand to put their hands together to say “Yay team!” It’s cute, but Norrin doesn’t look that interested. I look at the other kids – none of them seem interested either. I look at the other parents, who are watching their kids with eager anticipation. I know what they are thinking because I am thinking it to. We are all waiting for the same thing.

Birthday parties are the hardest; the most recent one, at a My Gym. All the children know each from school or the neighborhood, Norrin is the only unfamiliar child. He is scared at first, but after a few minutes he is running around like every other kid. Out of the corner of my eye, I notice the mothers who are able to just sit back and gossip while their kids play. I roll up my sleeves, pull back my hair and run around after Norrin - helping him with the party activities. He likes the ball pit best. I stand by and watch as he plays happily by himself, even though there are 5 other kids in the ball pit with him - all laughing and playing. Norrin sees right through them, as if they aren't even there.

I try very hard not to think about the future, I think of how far he has come in the last two years and I tell myself that it may not always be like this. That one day, he will know how to play with other kids. That he won't always need me to be at his side. That one day, when a kid at the park or at school asks him a question, that Norrin will know how to respond appropriately. He doesn’t need to be the “popular kid,” I just want him to be able to have one friend – if, of course, that is what he wants.

The other day while getting Norrin ready for school he says, “Go see Adrian-na-na-na-na.” I correct him and prompt him to say his cousin’s name properly. Norrin and Adriana are the same age, born a week apart.

Although the same age, Adriana
and Norrin don’t like playing the same games and as a “typically” developing child, April is much more advanced than Norrin. After five minutes of playing, Norrin usually goes off to do his own thing and I have to redirect him. Aside from watching catching, they have one common interest: play-doh. But even though the kids sit at the same table – Norrin hardly looks at Adriana. And Adriana tries very hard to get Norrin's attention.  

Though hearing Norrin specifically ask for Adriana, makes me happy. And he asks for her often.  It assures me that he does see us, that he does want some kind of social interaction – that the people in his life are not just objects or pictures on a wall to him. All those moments of watching him at the playground, at school, at the sensory gym or the playgroup – it happened when I really wasn’t watching. All I have to do is listen.

Norrin the Night Owl (1/25/10)

1:00 am
The boy pounces on our bed and wriggles his way between me and Joseph. I open my eyes and he is staring at me – his brown eyes wide open. “It’s Mommy,” he announces and squeezes my face against his. This isn’t a sign of affection as much as it’s the deep pressure touch that he craves. I cover him with the blanket and tell him it’s time to go to sleep. I’m hoping that he goes to sleep quickly. I calculate our hours of sleep – the score is five to three, in the boy’s favor.

It’s rare for him to sleep through the night. Some nights, it’s easy. He wakes up, comes into our bed and goes to sleep right away. Other nights, he’ll stay up two or three hours before going back to sleep. (And no, it doesn’t matter whether or not he’s taken a nap during the day.) But the way he is talking so clearly, I know that it isn't going to be an easy night. For some reason, he’s always the most vocal during the early hours of the morning.

2:00 am
The boy is still rolling around in our bed and it’s time to switch strategies. I kick Joseph awake and tell him to take the boy into his room. Sometimes the boy will go to sleep quickly with Joseph. With them gone, I lay in bed facing the door ready to jump out of bed at the slightest noise. I close my eyes, but I’m not sleeping. I know better. After a while it’s quiet and I think to myself, he’s asleep. But just as I’m about to turn over, the boy is back in our bed. With Joseph asleep in his bed, the boy has more room in mine.

(NOTE: I just want to mention that I do not approve of Norrin sleeping in our bed. As a baby, Norrin always slept in his crib – even though it killed me to hear him cry, I stood my ground. But I guess a baby in a crib is much easier to control than a 4 year old in a twin bed. And at this point, do I really want to argue? It's about choosing your battles.)

“Time for sleep,” the boy says before throwing himself on top of me. I can feel that his pull-up is wet. I’ll need to change it. For a second I think about just letting it be. But I know that if I don’t, I’ll probably have to change his pajamas and the sheets. I change him quickly, hoping that he’ll go to sleep now that he’s dry and possibly more comfortable. But instead, he walks back into his room. I am foolish enough to think it’s to go sleep in his bed.

3:00 am
I hear the contents of the boy’s trains being dumped out on the floor. I pull myself out of bed and walk into his room. Joseph is half asleep. I tell him to go back to our bed – he’ll need to get up for work soon. The boy, oblivious to the time, is happily putting the train tracks together and pushing Toby and Bertie along. He presses the button of the musical caboose and the Thomas the Train theme song fills the room. I know that once he’s started with that caboose – he’ll keep pressing that button over and over and over again. I snatch the caboose out of his hands and hide it. “It’s time for bed.” I pick him up and put him in his bed. And then he says “Pee pee in the potty.” Of course, at 3 am he tells me he has to use the potty – he never finds it necessary to tell me at 3 in the afternoon. I sigh and I’m so tempted to just let him pee in his pull-up. But since he never tells me, I drag myself out of his bed and walk him to the bathroom. And he actually pees! Normally this pee pee in the potty act is worthy of the “Good Job Norrin” song and dance – but not at 3 am. I whisper good job and he looks kind of disappointed that there is no fanfare. Oh well – sorry kiddo – try me after my first cup of coffee.

We get back into his bed and just as I lay down, I remember that I really hate sleeping in his bed. (If I knew then all the time I would spend sleeping in his bed, I would have spent a lot more money on the mattress.) I push him toward the wall and cover him (again) with his blanket. But he’s still not sleepy – not even close. He's just talking and talking. He crawls over me and goes back to his trains. I get up and bring him back to bed and I hand him a train, thinking that would get him to go to sleep. But no. He climbs out of bed again and goes for the trains. I have had it. I pick up all the trains and take the box to my room and shove it in the closet. I go back into his room and say very firmly, “No more trains. It’s time for bed.” He starts to cry and raises his hand and hits me. As he hits me, he says “Don’t hit Mommy.” Dizzy with exhaustion and frustration, I smack his hand and say “You don’t hit Mommy.” I feel bad that I’ve hit him and he starts to cry louder. I’m almost tempted to say “You wanna cry? I’ll give you something to cry about.” But I don’t. Instead, I pick him up, toss him into his bed, cover him with his blanket and tell him to go to sleep. I go back to my room and lay down. He doesn’t come into our room and he doesn’t get out of his bed. I have won.

4:00 am
I am dreaming. It’s a strange dream. I’m holding two pies of Singas pizza and waiting on line at the nail salon. Why am I standing on line at the nail salon – who knows? But how sad is it that I am dream of getting my nails? The last time I had a professional manicure was sometime over the summer. Anyway as I’m standing on the line, I hear something in the distance. I wake up because I realize the boy is ransacking the kitchen. I get up and walk to the kitchen and sure enough there he is – drinking juice and eating sliced cheese. Caught, he quickly closes the refrigerator door and follows me back into my room. He climbs into the bed, in between me and Joseph. I don’t even care anymore. I just want to sleep and I hope that he'll want to sleep too.

6:30 am
The alarm goes off and I hit snooze. Norrin is sleeping peacefully next to me and Joseph is long gone. I feel as if I haven’t slept – which technically I guess I really haven’t. I think about how tired Norrin must be and I almost feel bad sending him to school. Almost. I pounce on top of him and shake him awake. “Wake up! Wake up!” I yell. He rolls over and motions me away with his hand. I pull him up out of my bed and stand him up on the floor. His legs go limp but I keep standing him up until he stands on his own. I remind him that he was the one who wanted to play with Thomas and eat cheese at 3 in the morning. He says nothing. He knows I’m right. Or he’s too tired to fight me.

Norrin the night after - exhausted.  Thank goodness!

Goodnight Norrin (1/12/10)

Norrin will not go to bed without a bedtime story. 
I hold three books in my hand and ask Norrin which one he wants me to read – although I know he will want me to read all three. Who am I to deny him? Especially when he says, “read to me please Mommy.” A five word sentence! So I lay down next to him and we read together. He has most of his favorite books memorized and even though it’s late, and the melatonin is slowly working its magic – I still ask him to repeat the words he has mispronounced or said unclearly. When all three books are read, I cover him with the blanket and kiss him goodnight.

I say, “Goodnight Norrin.”

“Goo nigh Nonin,” he mimics.

“Goodnight Norrin.” I repeat, emphasizing the ‘d’ and ‘t’ in goodnight and the double 'r' in Norrin.

Norrin doesn't say anything. He lifts up his shirt and positions himself so that he can rub his stomach on my leg. My first instinct is to tell him to stop – but that would be reinforcing the negative behavior. So I simply adjust his shirt and tuck him back under the blanket. We look at each other and I’m waiting to hear the three words that every mother longs to hear.

“Goodnight Norrin. I love you.” Still nothing. “Say ‘Goodnight’ to mommy,” I ask.

“Say goonigh to mommy,” he says.

“No Norrin. Just ‘goodnight mommy.’”

This goes on a few more times until he finally says ‘goodnight mommy.’

He looks so peaceful and calm that I can’t help but give him another kiss goodnight. I tell him again that I love him and wait. Norrin will be four years old next week and he’s never said “I love you.” I know that he loves me. I see it on his face when I walk in from work and I feel that he loves me when he’s sick or hurt and wants know one else but me – still it’s something I want to hear. But the thought of prompting him to say it, I don’t know, it isn't right to me. Does he understand the concept of love? I have tried to explain it to him. He understands happy, sad, silly and mad – he recognizes those feelings. But not love. I know that one day he’ll say it, completely on his own and that he’ll mean it – of that I am certain. I say goodnight again and he pulls me in for a kiss. For now, a kiss will do. And then he smiles at me, I realize that 'I love you' is just a three word sentence to him - the kiss and smile say it all.

If you like this - be sure to follow our adventures on Atypical Familia.

Looking Back: A Year After Diagnosis (May 2009)

Norrin putting together a 60 piece puzzle

There is not a book in the world that can prepare you for parenthood – not a single one, I know because I’ve read more than a few while trying to do so. And even though I believed I prepared myself for Norrin’s diagnosis, it was still a complete shock. There was that small part of me that thought the doctor would say Norrin was “typical” and that there was no need to worry. If there was ever a moment in my life that I could actually feel my heart break, it was that moment when the doctor said: Norrin has been diagnosed with Autistic Disorder and Global Developmental Delay.

At 2 years and 3 months Norrin, had the cognitive level of a 14 month old and the language level of a 7 month old. Norrin didn’t point, wave or clap (a behavior that had regressed). He had no real words – at one point he had two or three words, but his language had regressed also). He didn’t jump or imitate behavior. He was extremely hyper and very self-directed. And he flapped his hands. Every evaluation score was either low or moderately low. And while the doctor recommended ABA/Speech/OT & PT – he offered little hope.

Walking into the doctor’s office my husband, Joseph, had been so optimistic, so certain that it could not be autism that I couldn’t look at him. I knew by the way he squeezed my hand that his heart was breaking too, that all the dreams that a father has for his son were crumbling. Joseph opened his mouth to ask the doctor a question, but stumbled over his words. He let go of my hand and put it to his mouth and cleared his throat. His leg was shaking next to mine. In our eight years together I had never seen him like that, he was always the person that held me together. I put my arm around his shoulder – we were in this together and it was my turn to be the strong one.

Later that day, when we walked into the babysitter’s house to pick up Norrin, the television was on and the other children were all sitting together, laughing and playing while Norrin sat in his playpen, alone and staring blankly at the television. Any other day, the image wouldn’t have bothered me but on this particular day, I couldn’t help but think that this was to be a foreshadowing of his life: isolated from his peers and alone in his own little box. Would he ever speak? Would he have a “normal” life? Would he ever participate in sports? Would he ever go to college? Would he be able to make friends, live independently, fall in love or get married? All these questions and thoughts about his future raced through my head. I picked him up and hugged him as tight as I could.

I couldn’t help but feel guilty. Was it my fault? I was angry, overwhelmed, depressed and guilty – always guilty. After a diagnosis, there is a series of emotions that a parent goes through, I felt them all – and some emotions are better left unsaid.

For the next year, we had a therapist in our

apartment 5 to 6
days out of the week for 2 to 3 hours a day. Talk about having your life turned upside down. Imagine having a stranger in your home every day – making your child cry, forcing he/she to do things they don’t want to do, teaching them things that come so naturally to other children (like pointing a finger). Joseph and I alternated our days, rushing home from work for Norrin’s daily therapy – with just enough time to wash the subway filth off our hands before a therapist rang the bell. It’s time consuming and intrusive but I wouldn’t have had it any other way.

The progress Norrin has made astounds me! In the beginning there was a lot of crying, biting and tantrums, but with patience (lots of patience) and a lot of work he is getting it – really and truly getting it! He can point, he can clap, and he can wave. After months of waiting to hear him speak, the first time he said Mommy was one of the best moments of my life. He can verbally communicate enough to get his needs met. He answers some questions and follows 2 to 3 step commands – he puts his empty cup in the sink, puts his dirty clothes in the hamper and throws away his garbage (I often joke that he’s better trained than most husbands). He can tell me all the names of his classmates. He knows all of his letters (upper case and lower case), can count to 20 (can even do it backwards!), and he can complete a 60 piece puzzle. He loves books and like all “typical” boys his age, he can watch Disney Cars over and over again.

The other day after I scolded him, he started to cry and then said, “sowweee mommeee.” I wanted to jump up and down – he knew what it was to be sorry! He understood my feelings. And at bedtime, Norrin has no problem saying “goodbye mommy” and taking me by the hand to kick me out of his room – it’s his time with daddy. And even though it kind of hurts my feelings, inside, I say to myself, “that’s good talking” because it makes me happy that he is using spontaneous speech. You see, in our house we celebrate everything – there is no such thing as a small feat.

People often tell me that Norrin is lucky to have parents like me and Joseph. I don’t know about that. Joseph and I are the lucky ones. Norrin has changed me, he has taught me patience and compassion and he’s made me realize that I’m a lot stronger than I ever thought I could be. 

I used to worry so much about all the things he couldn’t or wouldn’t do. I used to worry constantly about his future. And for a little while, I may have even lost hope. But just watching him grow and develop over the last year has made me realize that there is plenty of time. There are still many things he cannot do but a year makes a world of difference. So now I look to future with hope and excitement. Because if he’s come this far in a year, what will he be like in 10 years? His future is full of possibilities. But I’m not going to rush it. I want to sit and enjoy my time with him now – everything else will fall into place. Because as much as I tried to prepare myself for parenthood and for dealing with a child with autism, I realized that you can’t prepare for it – it’s not a test that you can study for. You will never find the answers in a book. The real answers come with time, patience and love – and Norrin taught me that.