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Stuff Autism Moms Might Say

by Lisa Quinones-Fontanez on Tuesday, 21 February 2012 SCHOOL/WORK/ HOME ALTERNATIVES 0 Comments

(originally posted on AutismWonderland on 1/27/12)

By now, you've had to have seen all of those "Sh*t _____ ____ say" videos. If you haven't. Where the hell have you been?

I find some of them really freaking hilarious. I could watch them over and over again. Anyway...I've been thinking about every which way to make one. But I wouldn't even know where to start. So last week I saw this post at Love That Max and was thinking of writing my own. And then I stopped by Aspie in the Family and read THIS post. I knew, I had to write my own.

So - here is my list of some of the Sh*t Autism Moms Might Say (or at the very least some of the Sh*t I Say regarding our life with autism) to their kid, their partner and anyone else:

Don't put that in your mouth!

Of course I'll read __________ again. (It changes from week to week.)

GOOD JOB!

Aren't you sleepy?

Say 'hello'.

Where are your pants?!

OMG - did you see what he just did?!

Did he poop?

He was up from 1 to 4 in the morning!

Did they write anything in the notebook?

I haven't slept.

He did it for the first time today!

He requires...

He hasn't really slept.

It's appropriate.

No, no - I'll work around your schedule.

Autism isn't a disease.

Uh, no...He's not like Rain Man.

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The Pool of Tears

by Lisa Quinones-Fontanez on Tuesday, 31 January 2012 SCHOOL/WORK/ HOME ALTERNATIVES 0 Comments

There are moments when the pressure, fear, frustration and anxiety of being a parent become so overwhelming and so daunting that a meltdown, at some point, is inevitable. That is how I felt last Friday. I came home from work, threw myself on the sofa, I put my head in my hands and cried - loudly. It was the kind of cry that takes over your entire body, my shoulders shook, my head hurt and my chest ached. I kept wiping away my tears with both hands but the tears continued to spill out from my eyes. And I felt as small and as helpless as Alice, drowning in the pool of tears.

I had spent the last week researching schools for next year, toured two schools (one of them featured a padded room). I questioned whether or not I was doing the right thing by Norrin. And I couldn't help but wonder if there was a place for him...and would I be able to find it?

And then in the middle of my hysterical sloppy meltdown, Norrin walked in the room. His eyebrows furrowed and he looked at me with genuine concern and confusion. He put his hands on my face and said, "Do not be afraid Mommy," and gave me a kiss. Of course, this made me cry even more. In addition to everything I had been feeling, now I had guilt; I hated for Norrin to see me cry. Norrin then jumped off the sofa and ran away. He returned with a single square of toilet paper and dried my tears.

I've read numerous reports on Norrin where someone has noted on his inability to relate. But in my moment of sadness, he related to me - in the sweetest and most appropriate way. I knew that I could not be afraid, because I could not fail him. And it was a comfort to know that as much as I am willing to fight for him and protect him - Norrin was willing to do the same for me.

from the archives of AutismWonderland (10/10/10)

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Looking Back: A Year After the Autism Diagnosis

by Lisa Quinones-Fontanez on Sunday, 15 January 2012 SCHOOL/WORK/ HOME ALTERNATIVES 2 Comments

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.

(post originally published on www.AutismWonderland.com - 9/27/2010)

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Preparing for Kindergarten

by Lisa Quinones-Fontanez on Friday, 02 September 2011 SCHOOL/WORK/ HOME ALTERNATIVES 0 Comments

It's the last weekend before kindergarten begins. And nervous is a complete understatement. I am scared. Worried. Anxious. Excited. I've been feeling all of these things all summer long but I will be honest. I haven't looked at his IEP since our last meeting in June. After that meeting, I put it away and took a time out from special needs. And since The Boy's last day of SEIT/related services, I haven't done anything truly constructive with him.

No. We have not colored.

Nope. We haven't practiced our cutting.

Did we play turn taking games? Memory? Hungry Hungry Hippo? Don't break the ice?
Uh uh, we haven't done that either.

The truth is - we needed a break. We needed a summer to ourselves. To just be. To take a quiet stroll in the neighborhood without asking him to label objects. To go to the playground without having him work on social skills. To sit and watch TV. Sometimes we'll talk but silence is okay too. To chill out on the sofa. The Boy, reading his book. Me reading mine. I did not want to be ruled by routines, even though I know, I know routines are crucial. I wanted him to do what he wanted to do, when he felt like doing it. Not having to cut his activity short because a therapist was knocking on the door. I didn't want to spend our summer thinking about goals and things The Boy should try and "catch up on."

There is time for all of that. WE have time.

But this weekend, I have to get down to business. This weekend, I have a project: to write an introductory letter to The Boy's teacher.

Over the weekend, I'll review The Boy's IEP. I'll take into consideration the goals he's made progress with (because even though I'm not keeping track - I am always keeping track). And with that in mind, I'll write my introduction letter to The Boy's new teacher.

My letter will include:

backstory (when he was diagnosed; previous therapies)
the progress he's made over the last year
his usual disposition
his strengths
his weaknesses
activities he enjoys
activities that are frustrating
items he'll work for
our concerns
any self stimulating behaviors (what he does/when he does it/how we redirect him)
what goals that mean the most for us
phone numbers and the best way to reach me, The Husband or my mother in case of an emergency.

I wrote a letter for last year's teacher and she said it was extremely helpful for her. It also works to your benefit. Teachers will immediately recognize that you are an involved parent and it starts off the year on a positive note. It says you are willing to be a true partner in your child's education. And I believe partnership is crucial for progress.

I am going into this school year with an open mind. I spent all of last year worrying and crying and stressing over finding the appropriate placement. And the truth is, I would be apprehensive over any school The Boy was going to - even the ones I believed were "the ultimate dream school." In the end, it really did all work out - not without heartache, obviously but The Boy is going to kindergarten! And I don't want my fear or anxiety to overshadow my excitement.

And if this school is not the place for The Boy, I've made peace with that too. And I know what will need to be done. But I won't worry about that right now.

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Just One of Those Days

by Lisa Quinones-Fontanez on Wednesday, 10 August 2011 SCHOOL/WORK/ HOME ALTERNATIVES 1 Comment

I've been up since 3 am (It's 6:27 pm right now). If you regularly follow this blog, you will know that I do not sleep. The Boy does not let me. But this last week has been out of control. Every single night, he's been up at 3 in the morning - dumping out Lego's, turning on lights, ransacking the kitchen.

I'm TIRED. And maybe it's my fault. Maybe instead of staying up until 11 o'clock watching The Food Network, I should have been asleep. (Damn you Guy Fieri & The Best Thing I Ever Ate!)

So this morning as I stood waiting with The Boy for the school bus (that came 15 minutes late), I burst into tears. For no reason other than sheer exhaustion.

And then there were train delays.

And then I got to work and just had a bad day.

And then there was a torrential downpour. And I had no umbrella. So I took an alternate route and met The Husband at work so he could drive me home.

And in my alternate route, I yelled at a lady sitting next to me on the train. (Because I'm tired and cranky.) In my defense she was drenched from the rain and brushing the mud and other god awful city debris off of her - in my direction!

And then while driving home with The Husband - there's traffic. Due to the torrential downpour.

And then I get criticized about how I make chicken by my mother. Who also wants to criticize the new OT therapist but I had to cut her short. Because I've decided, she just doesn't like male therapists.

But all through this crappy day, I kept thinking about The Boy.

As I lay in his bed last night/early this morning, with one eye open I heard him playing. Pretend playing, using his imagination, creating a dialogue. And then he's standing beside me, singing "If you're happy and you know it..." He sang the whole song. Clapping his hands. Stomping his feet. Saying "hooray."

And even at 4 am, in my sleep deprived state, I appreciate it.

I remembered when we first started teaching him that song, 3 years ago - when he first started ABA therapy. At the time he had no language, so we sang the song for him. We had to hold his hands to make him clap. We had to move his legs up and down so he could stomp. We had to lift up his arms and say "hooray."

I was so tired, trying to sleep with one eye open, I can't remember whether or not I said, "good job."

I've been thinking about how far The Boy's come in the last three years - all day long. I've been thinking about how he resisted his hands being clapped. I've been thinking about how stiff his little legs were, as we tried to move them up and down. I've been thinking about how heavy his arms were as we said "hooray." I've been thinking about how as he developed language, the words and movements were difficult for him to do simultaneously.

As I write this, I realize how silly this may sound to some parents. How some parents may be so sick of hearing or singing - "If you're happy and you know it..."

But I'll never get tired of it, no matter how tired I am. And while I'm happy I can appreciate The Boy's achievements, I just wish that I didn't have to appreciate them at 4 in the morning.

(published on 8/ 9/2011 http://www.autismwonderland.com)

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"It may be normal, darling; but I'd rather be natural."

by Lisa Quinones-Fontanez on Tuesday, 02 August 2011 Uncategorized 2 Comments

(orginally posted on July 22, 2011 - www.AutismWonderland.com)

Yesterday on facebook a question was posed: Is it important to teach your child with autism to "act normal"?

For parents with ASD kids, "normal" is often a goal. I remember our ABA therapist said to us "The goal is to have him look as normal as possible. For him to go out and have no one realize he has a diagnosis." That was three years ago and at the time, it seemed like a great idea.

Needless to say, the question prompted a lot of different responses. Here is mine:

I want The Boy to be himself as much as possible. I want him to be confident and happy. I want him to be included and form relationships - if that is what he wants. I want him to be accepted for who is, rather than be accepted because he's worked so hard at being normal.

I want to teach him Respect. Manners. Dignity.

I want society to see beyond the diagnosis.

I don't want him to be stared at or ridiculed or ostricized.

How can we talk about acceptance and then expect our kids to conform to what society deems to be normal?

Obviously, I wouldn't want The Boy to strip in public or bang his head against a wall or window in frustration. But if he flapped forever - who is that hurting? Is he to be shunned because he flaps or may repeat the same sentence over again?

So for now, we'll pass on being normal. I'd much rather The Boy be Norrin.

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Three Words I Don't Often Hear

by Lisa Quinones-Fontanez on Tuesday, 26 July 2011 Uncategorized 1 Comment

(previously posted on July 25, 2011 on AutismWonderland - http://www.autismwonderland.com/2011/07/three-words-i-dont-often-hear.html)

I don't hear the words "I love you" from The Boy very often. I prompt him to say many things. But those three words? Never. I don't want them to be forced, I don't want them to sound rote. I want him to say it when he means it.

Every night when putting him to bed, after kissing him goodnight, after reading him a story and kissing him goodnight again, I tell The Boy that I love him. I usually repeat it. Holding his face with both hands so that he can see my face and hopefully look me in the eye. Sometimes he repeats it. Sometimes he doesn't. Sometimes he gives me a kiss and asks me to "go away" because he wants "Daddy to read another story." Sometimes he skips the kiss.

I can count the times since he's started really talking in the last two years that he's said "I love you" spontaneously.

Last winter, at around 6 am on a weekday morning. I was calling out sick for work because I had been up with him all night nursing his fever. He was in our bed, barely awake, his cheeks flushed red. I pressed a cold washcloth on his forehead. I smiled at him. At how calm and still he was. A small part of me likes when he's sick. Every mother likes to be needed. And I savor the moments when The Boy is calm and still and lets me stroke his hair or sits beside me while I read a story.  He pushed the washcloth away. His eyes were starting to close and right before he fell asleep, he whispered "I love you."

Three weeks ago, Sunday I was sitting (w-sitting actually) on The Boy's bed reading a story. The Boy dropped a toy behind the bed and wanted me to get it.  Major klutz that I am, scooted back (still in w-sitting position) to get up. Instead I fell backward on the floor, flat on my backside. I screamed out in pain and The Husband hurried in to help me up. The Boy, seeing me pain, started to cry. With real tears and I had to get up to console him and reassure him I was okay. He put his arms around me, buried his wet face in my neck and sobbed "I love you."

This morning, The Boy and I are standing waiting for the school bus. And he's having a hard time standing still. I'm trying to make conversation. But The Boy is busy watching the pidgeons. He suddenly throws his arms around me and asks for a hug. I gave him a squeeze. And then he said, "I love you Mama."  So sweetly and so appropriately as if he just made the connection between the action and verbal expression. Maybe he did. I picked up The Boy (no easy task since he's about 52 lbs) and squeezed him again. Kissed him on his cheeks about twenty times before putting him back down. I tell him I love him too.

As the bus pulled up, I kissed him again, handed him his bookbag and said goodbye. He got on the bus without looking back and without saying goodbye.

So many parents take those three words for granted. Some parents, wrapped up in their own chaotic day to day, ignore these declarations of love. Me? I have to cherish each and every time because I'll never know when, where or why I'll hear them next.

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