Walking With Autism

2011-04-01T10:04:00.000-07:00

When you have a child diagnosed with an autism spectrum disorder, people don’t always expect you to have another baby. It’s not an easy decision. After all, despite everything we still do not know about autism there is one thing we can be fairly certain of- the existence of a genetic component or predisposition to the disorder. I did the research. One child in a family with autism can equal a 10% chance for a sibling to be diagnosed with autism. Hell, there’s even an entire multi-million dollar funded research consortium on this topic- the High-Risk “Baby Sibs” project.

It’s certainly a lot to think about. Besides long and sometimes emotional discussions with Brian; I spent a lot of time in those rare quiet moments when I was alone with my thoughts- before falling asleep, just waking up, the shower (oh how I agonize about things in the shower!) thinking about this decision. On the one hand, how can we take this risk? We have two beautiful, healthy children. We have gone to hell and back with family, friends, and teachers to try and pull Jack out with us. Why in the world would we ever want to leave the future of our family up to the roll of some mysterious genetic and environmental dice? If I had another baby, and he or she was diagnosed with autism- was perhaps even more impaired then Jack- how could I live with myself? I will have made life infinitely harder for my other children, for my husband, for my extended family, for myself. Who am I to tempt fate? What right do I have to think I should be so lucky again? Maggie was so beautifully and blessedly untouched by autism. Social, verbal, connected. As in tune and content with the world around her, as Jack was withdrawn and unhappy. And then there is Jack. To have come as far away from his initial diagnosis as he has took an incredible combination of luck, his own cognitive and personal strengths, the hard work and commitment of the right set of teachers, money, resources, and again- luck. Jack is the one miracle I get in my life. I have no business thinking I should be entitled to any more.

So how did I get here? One week away from having another baby- having taken that chance, having rolled those dice. In those quiet moments alone here is how I explain it to myself-

When I think about autism I think about loss. I never claim to speak for Jack but I have been witness to his trials and his suffering and I think I have at least some sense of what autism took from him. But to be selfish for a moment, to understand how I got here, here is what autism took from me:

I cannot look at pictures or watch video of Jack from the “before” era without feeling like I want to cry. My heart breaks for him and what I know he is about to go through and my heart breaks for me- for that innocent and naïve mom in those images who still thinks she can prevent anything bad from happening to him.

I cannot help but be consumed by jealousy when I see other two year olds talking and smiling. When I see other children of that age recognizing and engaged with their moms’ pregnancies- kissing their belly, talking to the baby, proudly wearing the “I’m a big brother” shirt and taking the must-have picture with the little brother or sister in their arms or gently kissing their heads. My own memories of that time are too painful: a child who did not understand that I was pregnant, nine months of protecting my stomach from physical assaults, a little boy who would have been too traumatized to visit me in the hospital and yet was so traumatized by my 5 day absence that when I finally came home all he could do was scream and cry- wouldn’t come near me, wouldn’t let me touch him, hold him, tell him I loved and missed him. The only picture of Jack and Maggie as a newborn together, not one of idyllic family love and bliss, but the two of them, separated by a pillow to keep her safe.

I cannot help but feel regret about the fog I lived in during Maggie’s babyhood. The attention that had to go to Jack, the interruption in our bonding time that comes from managing a house full of therapists and a 20 plus hour work week for a 2 year old, the guilt that comes from ticking off milestones with relief instead of unmitigated joy.

Autism took a lot from me. It took a lot from Jack. It took a lot from us. And in the end it boiled down to this: I wanted another baby and I wasn’t going to let autism take that from me too.

There is no such thing as a do-over in this life but maybe there can be second chances. In so many ways this pregnancy has been an unbelievable blessing. When we told Jack and Maggie about it they both understood. They have been happy and excited. Jack kisses and hugs my stomach. He tells the baby “I love you.” He just might be able to visit me in the hospital this time and I think he will finally take that proud picture holding the baby and kissing his or her head. To have had the chance to experience these 9 months in such a different way then the last feels like such a gift; one that no matter what happens, I wouldn’t trade for anything.

Life doesn’t give us any guarantees. Whether you already have a child with autism or you do not, there is no promise you get from God that ensures a life or a pregnancy or a baby without any problems. Without a doubt there are many things we must still be prepared to feel and to face. Are we ready to go back down the rabbit hole of autism with another child? If we have a boy, what will it feel like to look at him and be reminded of Jack, of what we went through? How will we cope with feelings of terror that might come from seeing the same signs and symptoms? On the other hand how can we rejoice in the smiles and words of a baby, celebrate his or her “un-Jack-ness” without feeling like we are betraying our other child, for being happy because he or she is not like Jack?

I’m not entirely sure of how I’ll feel or how I’ll deal with any of that. But there are two things I know with certainty-

No matter what comes our way we will love this child with the ferocity with which we love our other two and autism will never be able to take that away from me.

Why I Walk (Autism Speaks Monologue)

2010-08-16T06:41:00.000-07:00

I have a son with autism. Jack was born in January, 2005- a month later, Autism Speaks was founded. Throughout the first couple of years of Jack’s life, I often had the weird feeling the universe was trying to tell me something. Everywhere I turned I saw something about autism and Autism Speaks; and it became harder and harder to deny that the child they were talking about was my own. Jack wasn’t a particularly happy boy. He didn’t smile a lot and he loved to play by himself for really long periods of time. He obsessively lined up his cars, had uncontrollable head-banging tantrums, and wouldn’t look at me when I called his name. But I had a hard time accepting that something was wrong because Jack could speak. His vocabulary- on the surface- was impressive; he could say words like “pentagon” and “ocean-liner”- yet he couldn’t answer a simple question and didn’t seem to understand me when I spoke to him. When his little sister was born he didn’t acknowledge her existence- except when she cried. Then he would hold his ears and scream in concert with her or try to claw her out of my arms to make her stop.

The pieces of the puzzle were all there and soon there were too many magazine articles, PSA’s and T.V. shows about autism for me to ignore. We got help for Jack and he has made such incredible progress that next year he will be attending kindergarten in an integrated classroom.

I feel an incredible debt to Autism Speaks and to all of the parents, families and children who came before Jack who raised awareness, fought for services, and created an environment that made it easier for me to seek and receive help for my son. My name is Kera McLoughlin and this is why I walk.

To join our walk team or to make a donation click here.

What's His Story?

2010-05-17T18:11:00.000-07:00

I was at a party the other day and there were some kids there who I didn’t know and who had never met Jack. I was standing nearby when I heard Jack telling his cousin a story about his last pair of shoes- what they looked like, how the light-up part of them worked, and where they were now. Although the story of the shoes pretty much came out of left field and was told in a somewhat stilted and awkward way; his cousin, God bless her, listened patiently and kindly to him and even seemed genuinely interested in the whereabouts and characteristics of the aforementioned shoes. I walked away feeling proud of Jack for trying to have a conversation and thankful for his cousin who loves him so much and appreciates him for who he is. My happiness in that moment would not have lasted long however, if I had stayed one more minute to witness what happened next. Apparently one of the girls at the party; the one I didn’t know, turned to my niece after Jack finished his story and said; in a snotty and mildly disgusted kind of way, “What’s his story?” Unfortunately, I didn’t hear this exchange and was only told about it afterwards. I’m mad I missed it, because I would have liked an opportunity to answer her. Here is what I would have said:

His story is one of loss - at an age when you were probably enjoying Gymboree and music class with your Mom, he was working 20 or more hours a week to learn how to speak, how to play, and how to make friends.

His story is one of courage- every day he wakes up in a world where the sights, sounds, smells, and touches that you and I can enjoy, tune out, or tolerate; feel like an assault upon his brain and body. And as much as he’d probably like to hide from this world sometimes, he bravely enters it and does his best to cope.

His story is one of struggle- unlike the words you are able to so effortlessly and carelessly throw out; every word he pulled together to so proudly tell that story took effort.

His story is one of determination- no matter how hard it is for him to learn the things that come so easily to you; he never gives up.

His story is one of acceptance- although its not always easy for him to make friends, he wants to be friends with everybody. He doesn’t judge other children. He doesn’t like some kids more then others because of what clothes they wear, or how good at sports they are, or their “coolness” quotient.

His story is amazing- and you’d be lucky to know him.

This is Why We Do It

2010-04-26T05:21:00.000-07:00

I spent about 12 hours this weekend with some wonderful people at the Barnes & Noble bookfair supporting Autism Speaks. Over the course of the three days at this one store I had the privilege of hearing the stories, the struggles, and the successes of ordinary people who rise to extraordinary levels because their lives have been touched by this disorder. I was reminded once again why we do what we do. It is for-

The Grandma who came in to look for a book that may help her 10 year old granddaughter with autism deal with the ostracism, ridicule, and rejection she is beginning to face as she enters adolescence.

The Mom who was having a special "mother-daughter" day with her little girl because of how wonderful, strong, and helpful her daughter has to be every day because her younger brother has autism.

The teachers- from Early Intervention to High School Special Education teachers and aides who work hard day in and day out for little pay to educate, nurture, and advocate for our children.

The young man who is trying to learn everything he can about autism so he can successfully advocate for his younger brother- a teenager who feels so tortured by his peers for his differences that he wants to quit school.

The Mom who was celebrating the successes of her son and his acceptance into college but who was also still working hard to gather the support and information she needs to learn how to help him with this new phase of his life.

The Grandparents who have not one, but three grandchildren in the same family affected by autism.

The "typical" young boy who came over and dropped some of his own change in our can and who may end up becoming a force for change in his school and neighborhood- leading to more compassion and acceptance for children with autism and special needs.

The Mom who will never stop fighting to hear her son speak.

These were just some of the people I met- in one store, in only three days. Imagine all the other untold stories in bookstores and communities across the country and around the world. This is why we do what we do.

Living the Mainstream

2010-04-20T19:39:00.000-07:00

This past week two dreams I’ve had for Jack came true. Kindergarten and Little League. First came the big decision about kindergarten. On Tuesday I had my transition from CPSE (committee on pre-school special education) to CSE (committee on special education) meeting for Jack. The meeting. The one where his future in the K-12 educational system would begin to be mapped out. The meeting went how I hoped it would. It was decided that Jack would remain categorized as a “special education” student but come fall he will be in an integrated kindergarten class at our home elementary school- a mix of “typical” and special-education students. He will be in a class with a regular and special-ed teacher and he will get speech several times a week, but other then that, very little will distinguish him from the other “typical” children. He was officially entering the “mainstream.” I signed the papers, we all shook hands, and then I went on my way.

Cut to three years ago. Brian and I are sitting at our kitchen table with a psychologist, a county service coordinator, and an official designee from the department of health early intervention program. We are drawing up Jack’s IFSP. I am asked, “What are your goals for him?” Before the events that brought us to that table unfolded I would have thought- to be the best in school, to go to Notre Dame, to have lots of friends, to be the handsome star athlete scoring the game winning basket or throwing the game winning touchdown, to get married and get a great job and have just an oh-so-fabulous life. All of those fantasies I had that I was using my son to star in had come crashing down and something new was left in their place. A desire that had never been there before because up till that point the achievement of it had been completely and utterly taken for granted. I want him to go to kindergarten. I want him to go to kindergarten here in Wantagh. With “typical” children. In a “typical” classroom. I love that he’s different. I love that he’s special. I love that he’s unique. But I want him to have an opportunity to learn, and play, and live just like any other kid. I saw Wantagh Elementary in my head. I would picture Jack getting off the bus with his backpack and his friends, bouncing happily into school. I would replay that image over and over again. I’d drive by that school every day and project that image from my brain onto its front lawn. I’d run a countdown in my head. Three years to make it happen. Two years to make it happen. One more year- I think its going to happen.

The path from that very first meeting to this last one wasn’t straight, and it wasn’t short. There was Jack’s amazing early intervention team- from his OT, speech, and socialization teachers; to his ever-patient and doggedly determined six person ABA team. Then there was the transition to Little Village- a new OT, another speech teacher, more special education teachers and assistants. Throw in the patience and understanding of two years worth of teachers at Jack’s “typical” preschool and the guidance and support of his SEIT and you truly have a village leading Jack through a great deal of hard work . So after all of that it was weird to leave his meeting and not quite have the magnitude of the moment and Jack’s achievements sink in. Then came Little League.

Jack’s first day with the team was on Saturday. He would be marching in the opening day parade in the morning. Of course we couldn’t tell him it was a parade- to him parades can be loud and scary. Instead we called it- “walking down the street with your teammates.” I wasn’t expecting the first day to go smoothly. I didn’t know if he’d be overwhelmed by the parade and refuse to walk or if he’d be holding onto Brian’s leg with his hands covering his ears. Maybe he’d be fine till he saw Maggie and I watching him walk and then he would get upset. Instead when I approached him that morning I saw him laughing, joking, and horsing around with his teammates. Then when the parade started he marched happily down the street holding the sign for his team. During his first game that afternoon he was smiling from ear to ear- He fielded a few balls that came to him and made some throws to first base. He cheered for his teammates, was so excited to get up to bat, and loved running around the bases. There was not a single problem or issue the entire day. He was part of the team- just another kid playing his first game of Little League.

As I stood there watching him high-five his teammates and talking to them in the “dugout” I finally felt the enormity of what happened that week. When Jack was born I never thought he’d have to work as hard as he has to make these ordinary childhood moments happen. I didn’t expect the struggle to make these “little” dreams come true. And so I’ll admit- I sometimes still imagine him as the future shortstop for the New York Yankees- nothing wrong with dreaming big. But sometimes the dreams you never thought you’d have to fight for are the ones that are the sweetest to achieve.

Sunshine Through the Rain

2010-04-11T17:19:00.000-07:00

Last week Jack and I had a moment. Not the grand life-changing-on-the-stage-millions of-people-watching kind of moment Simon Cowell is always talking about on Idol these days; but a moment nonetheless. Vacation just ended and Jack was back at school for a couple of days. It was a Thursday and the first day he had to acclimate to going back to both his schools (special ed and “typical). Sometimes I forget how draining this can be for him. After he was done with both schools we went for a walk around the neighborhood. Then he went into the backyard and wanted to ride his scooter on the deck. When I tried to explain to him that he couldn’t ride on the deck (because he kept riding perilously close to the stairs) and had to ride on the patio; he went into full meltdown mode. The patio, he angrily insisted, is for basketball only. The deck is for skating. No amount of reasoning, cajoling, or explaining was going to convince him otherwise. He simply could not tolerate the idea of riding his scooter on what, in his mind, he had designated as, “the basketball court.” So the scooter got locked away in the garage and Jack just lost it.

Now by my definition a meltdown is different then your run-of-the-mill tantrum. A tantrum is- I want something, I can’t get that something, I whine, scream, stomp my feet, pound my fists- all in a somewhat controlled and deliberate attempt to get that something I want. A meltdown makes a tantrum seem tame in comparison. It is a complete and total loss of control- a sinking into an emotional abyss. There is usually very little that can raise Jack out of that abyss other then time, space, and sheer exhaustion. But this time was different. In the middle of his screams and tears I was remembering how difficult it always is for him to transition back to school after a long break. “Oh buddy you’re really, really tired,” I thought out loud. I was talking more to myself- to remind myself not to get so frustrated, to cut him some slack. And then Jack did something that took me by complete surprise. He looked up at me, held out his arms for me to pick him up and said, “I am really tired! I want to go upstairs and take a rest.” I couldn’t believe it. He was reaching for me. He wanted me to comfort him. He was recognizing what was pulling him into meltdown mode and he was willing to take my help to get himself out. That had never happened before. Not once. It was like seeing the sun peek out from behind a wall of clouds.

There are still moments on this journey when I get caught off guard; when Jack says or does something for the first time that makes my breath catch in my throat. And sometimes it takes those darker moments for that light to shine through.

Confessions of a “Sanctimommy”

2010-04-05T19:27:00.000-07:00

I’m guilty. I’ll admit it. I’ve judged (and judge) other moms. Before I had kids- no way will my children ever do that; after I had kids- my kids may do this, but they would never do that! Even after I walked through the proverbial fires of judgmental mommy hell with Jack- a screamer, a kicker, a hitter, a non-sharer, a throw myself down on the floor kind of kid- the perfect lightening rod for stares, head shakes, and behind-the-back whispers; I’ve sat as judge and jury on other mothers.

You’d think I would know better. That my experiences with Jack would be enough to turn down the judgment dial for good. But no; I’d still have my moments of, “Can you believe that child just did that, or- is that really how that Mom is going to handle this? Then I read an amazing post by Diary of a Mom and learned about the recent uproar over the blogger Smockity Frock. Smockity’s post, (since removed, and an apology in its place- but you can read the original here) was about a little girl who she judged as being spoiled, bratty and impatient, but whose behavior and grandmother’s interaction with her sounded; to so many who have lived it, just like autism. I read the blog and felt sick- not just because the child she was describing could just as easily have been Jack- but because the author could just as easily have been me. Its easy to stand back and say what she wrote was horrible and holier-than-thou (and of course there was the delicious irony that she was making her judgements upon the child and grandmother while reading her bible); but that would be letting myself off the hook too easily. While I would never judge a child who I suspected had autism or another developmental disability, that hasn’t stopped me from making judgements about other moms and their children who I assume are okay targets for my “sancti-momminess.” I couldn’t have agreed more with the people who criticized Smockity Frock for mocking a girl who sounded like she had autism, but I felt like the subsequent internet debate over whether the child described was or wasn’t autistic sort of obscured a larger issue. Isn’t whether or not the little girl in the story had autism somewhat beside the point? This woman decided to devote an entire (widely read) blog post to ridiculing a 4-year old girl and her really sweet sounding Grandma. If the little girl didn’t have autism, would that somehow make the mocking and judgements okay?

I started to think back on the times Jack has had public meltdowns while we were surrounded by other women and moms and I wondered how much different those experiences would have been if I had felt their support instead of their contempt.

I’m at swim class with Jack. The one place I feel like a “normal” Mom and the one place where he looks as comfortable and “at home” as any typical kid. His teacher John is injured. Out for 6 months. If I want to keep Jack in swimming he has to go with a new teacher. Yeah right. He paces around the edge of the pool; walking in circles, clenching his fists, screaming. He wants to go in. He doesn’t want to go in with “her.” “You go in with her or you don’t go in at all.” He wails; I coax, plead, reason. Nothing works. Now he’s in a state of complete hysteria. Here comes the fun part. Carry him away from the pool, into the dressing room. Trying not to drop him. Trying not to get injured by him. Into the locker room; a room full of Moms and their perfectly calm and angelic little children. Gotta get Jack back in his clothes. He sounds like he’s just been burned with scalding hot water. The moms all look. The moms all pretend they’re not looking. Mom #1 wants to know, “What’s wrong with him? Having a bad day?” “Yeah- a bad day, I guess you could say that.” Mom #2 is raising her eyebrows and shaking her head. Mom #3 (my favorite) is singing “Do you know the muffin man” in a ridiculously loud and high-pitched voice. I’m feeling the weight of their judgment pressing on my chest. Don’t cry, don’t cry, don’t cry. Hold it together. Carry him out. Getting hit, kicked, punched. The eyes of the staff behind the counter- pity- not much better then the judgment. “See you in six months!’ Out to the car. Get him in the seat. Take a deep breath. Need all your strength-use your arm, restrain him, buckle his chest so he can’t keep bucking out of the seat. Please Jack. Please. We have to get out of here. Finally- drive away. He’s still screaming and thrashing. I can cry now; sob. He pauses. “Stop sadding Mama!” Again; in fear and confusion, “Mama stop sadding!” Oh God. His cries make it worse. I’m only adding more layers of pain to the terror and confusion he already feels. But the dam has broken. I try, but I can’t stop.

Another time; we’re in the supermarket. Going great. So helpful. So cooperative. Next aisle; “I want crayons!” “No.” “YES!!” Hold my ground. “No, we don’t need that.” Tantrum begins. No turning back now. Battle ensues. Screaming escalates; aisle, after aisle, after aisle. Here come the dirty looks. The smug head shakes. I know what they’re thinking. My kid’s a brat. I’m a bad mom. For letting him scream. For ignoring his screams. “What would you like me to do?” I so desperately want to ask them. Give him the crayons? Reward his meltdown just so you don’t have to hear it? Leave the store? Didn’t realize I gave up the right to finish food shopping for my family because my son has PDD.

The sad thing is I’ve got a million of these “feeling judged” stories and almost all of them involve other women. The one time I can remember feeling what it was like to be supported by a stranger rather then shunned was during a trip to Toys R’ Us a couple of years ago. Things were going great until we had to leave the car aisle. Jack flipped out- kicking, screaming, banging himself on the floor- the works. He’s a big strong kid and it wasn’t always easy to get him settled into his stroller even in the best of circumstances. I remember I had my lightweight umbrella stroller instead of my bigger carriage. Every time I tried to lift him into it he was struggling so hard the entire stroller would flip completely backwards landing both him and I on the floor. This happened not just once- but two or three times. I saw a man out of the corner of my eye shopping for board games in the same aisle. He started to approach me and I was gearing up for battle. I felt humiliated and beaten down enough without having to deal with the unsolicited advice or comments of a stranger. Instead he walked around to the back of the stroller, grabbed onto the handles and said, “Here, it looks like you could use some help- let me steady this so you can get him in.” I looked up and all I saw in that man’s eyes was compassion. No judgment. No pity. Just compassion and concern. I wish I could remember another story like that where it was a woman; a mom, a fellow veteran of the parenting battles who had helped me. Who showed me that kind of compassion (friends and family excluded of course); but I can’t.

That man in Toys R‘ Us didn’t necessarily know anything more about autism then the women at swimming or in the supermarket. For all I know he could have been thinking my son was a brat. But he didn’t show it. He didn’t judge; he helped. So we can raise awareness about autism. We can hope that awareness leads to more supportive, compassionate, and tolerant attitudes among the public. Yet there may be hundreds of reasons other then autism why a child and his mom, dad, grandparent or caregiver may be having a bad day. So no matter what the circumstances might be, maybe we can all; myself included, be like that man in the toy store- judge a little bit less and care a little bit more.

If Every Day was Groundhog Day

2010-03-31T06:52:00.000-07:00

Last Friday night I had to take Jack to the ER for stitches- the second time in as many months. The first time happened on a Sunday morning in January. He was spinning around and spun himself right into the corner of the wall. His head busted through the sheet rock to the metal edge and split a cut into his forehead an inch long. Once we got into a room at the hospital the plastic surgeon explained that he would need to go into this contraption, which for all intent and purposes is basically a kiddie straight jacket. We weren’t sure how Jack would react to being restrained in this thing but we soon found out as he flailed and struggled so violently that the nurse who was assisting had to basically lay on top of him and hold his head in a vice grip to keep him steady. Before the plastic surgeon even touched him he began screaming at the top of his lungs- “I HATE YOU!!! I HATE THIS!!!! I HATE THIS HOSPITAL!!!” “I TOLD YOU THIS HURTS ME!!!” His face was beet red, his voice was hoarse, and his spit was flying everywhere. He didn’t let up the entire time it took to get him stitched up and released. Needless to say when he walked out of his friend’s bedroom on Friday, blood pouring down his face and crying, the thought of another go-round at the ER made me feel sick. I didn’t see the cut at first- just the blood. I asked my friend’s husband to look at it and said, “please Jim, tell me it doesn’t need stitches.” He pulled the washcloth away from his face long enough for me to see there was a hole in the shape of a v on Jack’s eyebrow- about 3 inches below his last set of stitches. “It needs stitches” he said to me; so apologetically. I’m not good with blood, Jack was screaming, and I felt a little dazed but I zeroed in on getting hold of the plastic surgeon who stitched Jack up the last time. We started heading to the hospital not knowing whether or not the surgeon would be able to meet us there. I knew there was a chance that knowing what to expect this time could make Jack’s reaction even worse- but I also knew that replicating the conditions of our first hospital visit could help Jack deal with it more calmly this time around.

When we got to the hospital and they told me the doctor was already there I felt so relieved. While we filled out our paperwork in triage I started to talk to Jack about what was going to happen. I tried to walk him through everything- now that I knew how it worked too- and reminded him that since he had done this before he was going to be able to be so brave. When we got into the room the difference was almost unbelievable. He climbed right into the restraining blanket and joked that he felt like “a mummy.” When the doctor used the needle to numb the area he winced a little then said in a calm, quiet voice, “thats starting to hurt, how many more seconds please?” When he was being stitched up and the “string” touched his nose he laughed and said, “you’re tickling me!” He laid perfectly still, didn’t cry or scream, and thanked the doctor when it was done. I turned to Jim and said, “you must think I’m lying about what this whole thing was like last time!”

After it was all over, I thought about how Jack appeared to outside observers on both visits. The first time- a difficult, hostile, angry, and maybe unmanageable child. The second- a mature, brave, calm, and polite little boy. It made me think about the importance of giving children what they need- not just kids with PDD- but any child. I’ve always been able to see the negative with Jack’s need for sameness; for order, repetition, routine. Having a child who insists on eating chicken nuggets for dinner every night- the same brand of nuggets no less, isn’t ideal for anybody and invites a lot of judgement. If I get my hair cut, colored, or straightened, I risk upsetting him. Vacations are not something that can be taken on a whim and where we stay, who we stay with, and how we travel all have to be carefully considered. Introducing a new piece of furniture, rearranging a room, even the decision to buy a new car has to be carefully thought out and groundwork laid to prepare Jack in advance. Sometimes things we think we have down pat can be disrupted when circumstances beyond our control change. The last year in old Yankee Stadium Jack was, what Brian liked to call- the “super-fan.” He wanted to stay for entire games (including extra innings) and would cheer and clap while following all the action. Then at our first game in “new” Yankee stadium we discovered that our season-ticket seats were right under a ridiculously loud speaker. I think it was an exhibition game before the regular season and the Yanks hit back to back to back homeruns. With each successive homerun the noise level increased until Jack was sobbing. We had to leave early and felt so sad when he kept saying, “I don’t like this Yankee Stadium!”

But then his trip to the ER happened and made me realize that while Jack’s need for familiarity and repetition can be a pain, it can also be a blessing. I mean the simple act of just repeating an experience could have extraordinary results- it enabled Jack to handle what was happening to him not just better then last time- but better then most “typical” kids would handle that experience. Of course I would rather not have to replicate ER conditions in the future but it just goes to show that you can’t write a child off as being bad, or difficult, or “stupid” just because you may have to work a little harder to help them handle something that may come easier the first time to another child. Once again Jack showed me how amazing and special he is, not despite his differences from other kids- but because of them.

Three Little Words

2010-03-18T07:56:00.000-07:00

When it comes to Jack, I sometimes feel I live in a no-man’s land of parenthood. Not quite fitting in with the moms of “typical” children and their parenting issues and yet, because of Jack’s incredible progress and success; feeling a secret guilt about professing membership in the autism community. I’ll hear a story about a parent coping with a child with severe autism and know that I can’t claim any real understanding of what that’s like. Then I’ll shuttle Jack from his special-ed pre-school to our neighborhood nursery school and listen to the other children chatter so naturally and comfortably with each other. I watch them and ache as I think about the walls Jack still has to climb to join them.

Part of being in this “no-man’s land” is feeling conflicted about a lot of different things. One of those things centers around the words “I love you” and my son’s ability and inclination to say them. Jack isn’t non-verbal. He has told me that he loves me. There are parents of children with autism who will never hear their child say those words. But I guess you could say I’m greedy- or maybe its how generous my daughter is with her expressions of affection that make the absence of Jack’s “I love you’s” all the more glaring. I’ll tuck Maggie into bed at night and I’ll get five “I love you’s” from her before I leave the room. Last night I put Jack to bed and as I always do, pulled the covers up, gave him a kiss and said, “I love you pal.” He smiled and hugged his stuffed animals tight in response but otherwise didn’t say anything in return. I think I told him I loved him three more times before I left his room hoping to get one thrown back at me. But I rarely, if ever, get spontaneous expressions of that sentiment or even a simple, “I love you too Mom.”

When he was younger I would play a game where I’d say, “guess what? I love you,” and give him a kiss on the forehead. I’d repeat it over and over again till he would start smiling and giggling in anticipation. Then I would say, “guess what?” followed by a pause and he would repeat back to me, “I love you.” I’d play this game whenever I longed to hear him say those words to me. It seems sort of silly- I mean, why do those words matter so much? They are, after all, just words; and the hugs and kisses I get from Jack should certainly be enough to tell me what I want to know.

Wrapped up in all this are the two emotions I’ve spent the last three years of my life feeling- jealousy and guilt. Jealous about what other moms have, guilt at wanting more. How unfair it is that other moms can hear their child say those words without prompting them to do so- How wrong it is for me to even complain when one "I love you" or hug in a lifetime would mean the world to another Mom or Dad. Sometimes I wonder if I'll spend the rest of Jack's childhood straddling these two worlds and the twin emotions that come with them. And if one day I find myself fully entrenched in one world or the other- I may finally be able to lose one emotion, but I know I'll never be able to lose the other.

The Autism Debate: Who's Afraid of Jenny McCarthy?

2010-03-07T06:59:00.000-08:00

The Autism Debate: Who's Afraid of Jenny McCarthy?

I have very mixed views on Jenny McCarthy. While I appreciate the fact that the combination of her personal story and celebrity status has helped bring autism awareness to new heights; I can't help but feel that the positions she takes on vaccines and biomedical treatments pose a great danger to society.

To be fair, my "autism experience" has been very different from hers. My son was never non-verbal nor did he suffer from any serious medical condition such as the seizures McCarthy's son Evan does. I also never witnessed an abrupt change in Jack that some parents do around the 18 month mark- which leads many to believe very strongly that the MMR vaccine is the cause of their child's autism. Jack never went through any sort of extreme regression and he demonstrated behaviors that I associate with his autism spectrum disorder long before he ever received the MMR. I also cannot say I remember any substantial changes in Jack after the vaccine- I know because the paranoid-hypochondriac that I am watched him very closely after receiving the MMR for any signs of "trouble." That being said, I am very critical of the fact that Jenny McCarthy leads people to believe that she knows, with 100% certainty that the MMR was in some way to blame for her son's condition. I read her book, Louder than Words and honestly felt that she was trying very hard long after the fact to link the vaccine with her son's deteriorating condition. Many people haven't actually read the book and don't know that she describes behaviors that she calls "little signs" early in her son's development (i.e. before the MMR)- for instance he didn't smile until he was 5 months old, and engaged in flapping and toe walking- all classic signs of an ASD.

The other thing that really bothers me about Jenny McCarthy is the fact that she's always saying how she used google and the various biomedical treatments she found there to help her son recover. I have rarely, if ever, heard her talk in detail about the fact that her son received 40 hours of ABA treatment a week! Actually once on Larry King she said something along the lines of, "I don't want to talk about the ABA, because everyone knows about ABA," and then she continued to spend the rest of the program talking about diet, B12 injections, etc. I wanted to scream at the television- "actually Jenny- not every parent who may be facing an initial diagnosis does know about the importance of intensive ABA therapy for a child with autism- in fact, listening to you, they may just think diet and a whole bunch of potentially invasive and medically unnecessary treatments alone can "cure" their child!" Along these same lines its incredibly frustrating as a parent trying to provide the best care for your child to be given suggestions from well-meaning friends or family for his treatment based on something they read Jenny McCarthy was doing in US Weekly.

She has also, most certainly contributed to a growing reluctance among parents to vaccinate their child. It is scary to think where this trend might lead...

My Autism Story- Why I Walk

2010-03-04T19:24:00.000-08:00

When Jack was born I thought he was the most beautiful baby in the world. He had that perfect round head and unblemished face that only babies who enter the world via c-section can have. His coloring was rosy and in some pictures looked almost tan. He was so big it was as if he had passed right over the newborn stage- and at almost 23 inches long and weighing in at a little over 10 pounds the nurses called him “a little linebacker.” As I was wheeled out of the hospital five days after his birth, people stopped to stare at him. I remember thinking he was going to live a charmed life.

The first concern I ever had about Jack was over his seeming inability to feel pain. After he was circumcised in the hospital the doctor came in to tell me how well the procedure went- the baby didn’t even make a sound. Our first visit to the pediatrician and his first vaccines- not a peep. When he’d scratch his face, get his diaper changed, or hit himself with a rattle or toy- nothing. As a chronic worrier and a hypochondriac the first thing I thought was that Jack was afflicted with this disorder I had just read about in People magazine- a child whose nervous system was impaired to the point that the little boy could not feel any pain. I told Brian about what I’d read and asked him to convince me that I was being silly- which he did. Because yes- there were clearly times when Jack did seem able to feel pain- he just wasn’t as sensitive to it as some children might be.

I had gotten my first taste of what it was like to be a Mom and to worry about all of the things that could happen to your child that were out of your control. In the weeks after Jack’s birth when I would feed him and hold him close I would sometimes break down in tears. My heart felt like it had expanded to twice its size because of this love I had for him. The feeling was almost unbearable- how could I stand loving another person so much while knowing there was so much in this world I could not protect him from? I don’t imagine this feeling is unique- in fact, I have to believe that for all parents, from the moment our children are born so is our greatest fear- “what if something bad should happen to them?”

As Jack grew, so did my sense that he was different from other children. He was always very serious and wasn’t quite as “smiley” as other babies. People would talk to him in stores expecting a bubbly, cooing baby to smile back but most of the time he would just stare right through them. He loved to play by himself and from the time he could sit up his favorite activity was to take all of the toys out of his basket one by one and then put them back in. At first I would try to engage him- I would grab the toys and try and make them move and sing and do all the “Mom” things you are supposed to do with your child. Most of the time though I felt like I just annoyed him. He would get agitated because I was disrupting what he wanted to do. I ended up leaving him alone to play since that’s what he seemed to prefer. I thought I was lucky to have a baby who was willing to play by himself for such long periods of time- sometimes an hour at a stretch (it was only later that I learned that the length of time Jack would spend playing by himself without seeking adult interaction was considered “developmentally inappropriate.”)

Jack was in many ways, hard to figure out. He was serious and intense but he did smile and laugh. He preferred playing by himself but that didn’t mean he never sought out interaction. He hit all of his developmental milestones- including language- and even seemed to surpass other children in his abilities. By 18 months old Jack knew the entire alphabet and could count from 1 to 10. He taught himself these skills by playing for hours with a basketball game that would run through all the letters and numbers for every basket in the hoop. He knew almost all shapes and could even tell you what a pentagon was. He loved Baby Einstein videos and would memorize all of the vocabulary from them- one of his favorites was the movie “Things That Go.” After watching that show he would point to a boat and say- “ocean liner.” I thought he was a genius and that was why he wasn’t quite like other children. He must be too smart to act like just another “happy-go-lucky” toddler.

For the next year- from 18 months to the time Jack turned 2 1/2- the behaviors that would accompany his disorder began to present themselves in full force. He would line up his cars. This was, in fact, his absolute favorite activity. This is also the one trait he demonstrated that makes me disgusted with myself for not getting him diagnosed sooner. Even now as I sit here and type this I feel a pit in my stomach. I knew this was a sign of autism. This was one of the major reasons why I was always drawn to reading about autism- more to silence the nagging thoughts that were beginning to enter my head than to prove that Jack had the disorder. Unfortunately the information I came across enabled me to do just that- Jack hugs! He talks! He makes eye contact! He couldn’t possibly be autistic! Yet things just kept getting worse- not better. We tried to do Mommy & Me classes together but most of the time they just ended in disaster. He was beginning to become very aggressive and would hit and push other children or would tantrum throughout the class because he found it too overwhelming. We lasted about two weeks in Gymboree because all he wanted to do in that class was make a bee-line for the door. I realize now that many of these classes were an assault upon Jack’s senses- the amount of information coming in was just too difficult for him to process. But at the time I would leave the classes in tears- I couldn’t understand why I couldn’t enjoy doing the things with my son that seemed to make other children so happy.

As Jack drew closer to age two he became more difficult to manage. For a child who craved structure, routine and “sameness” it did not help that we were packing up to move out of our house as I grew noticeably more pregnant with my daughter Maggie. He became more and more picky about what he ate, more aggressive with us as well as with other children, more agitated by changes in the routine. If someone touched a car he had lined up he would throw himself to the floor and convulse in hysterics. If a friend or relative came by and made eye contact with or said hello to him he might scream, or bury his head and cry. I chalked it up to the terrible twos but knew in my heart that there was an intensity and frequency to Jack’s behavior that just wasn’t quite right. I remember thinking to myself that my unborn baby was going to have to be incredibly strong to survive the nine months because of the intense physical struggles I would have with Jack. When I would change his diaper he would scream and cry and kick me repeatedly in the abdomen. When he wouldn’t willingly come inside the house or go upstairs for his nap I would have to carry him- there were times he would wrestle so violently in my arms that I feared Brian would come home from work to find us at the bottom of the stairs.

After my beautiful baby girl was born, things didn’t get any easier. Jack showed no interest in Maggie other than to be annoyed and angered at her presence. I can’t remember him ever giving her kisses or saying “hi baby” or doing any of the other things that siblings do. I know that most big brothers or sisters go through the phase of being jealous or hitting or biting the baby. But they also usually show an interest in and/or some love for them. Jack could never be left alone in a room with Maggie- we were petrified that he might seriously hurt her. I feel like that is such a terrible thing to say about your child- but it was the truth of his behavior and our lives at the time. In addition to expressing his anger and frustration by hitting and kicking us or his sister, Jack also began to self-injure. When he would have a meltdown (which he would have often, and over the simplest thing) he would begin to bang his head- on the hardwood floor, the walls, the bars of his crib- anything close by. One day I decided to follow the advice most child-care books will give you and ignore the tantrum. As soon as he threw himself on the floor and started screaming I walked out of the room. I had left him in the kitchen, on the floor- close to a cabinet drawer with a metal handle. After a couple of minutes the screaming stopped and it was quiet. I felt proud that my strategy had worked- I had “won” and outlasted his tantrum. The next thing I knew I heard Jack’s feet plodding towards the den and a little voice called, “mama?” I looked up and felt like I got punched in the gut- I actually thought I could vomit. On his forehead, over his right eye, was a huge egg- already a disgusting black and blue- from where he banged it (I believe on the kitchen cabinet). It is painful for me to think about that moment. I feel guilt over having left him alone to do that. I feel sick over the minute when his screams stopped before I saw his injury that I gloated over “winning” the contest. Most of all I feel anger when I remember how Brian had taken him to the pediatrician and asked if we should be concerned that our son did that to himself and was told “as long as he stopped once he hurt himself- its not a concern.” Once again I knew that head-banging can be a sign of autism. I also knew people who told me stories of relatives and friends who did it when they were toddlers and who turned out just fine. That’s why I didn’t press the issue with my pediatrician. I just wish the doctor wasn’t so quick to blame the behavior on “new baby in the house syndrome” and had taken a little more time to ask some follow-up questions- maybe then we wouldn’t have had to wait another four months before getting Jack help.

Between the ages of two and two and a half all of the behaviors that would contribute to Jack’s ultimate diagnosis were present. The uncontrollable meltdowns, the obsessive lining of cars, under-responsiveness to pain, hand flapping, toe-walking, and a lack of response to his name. The flapping I explained away as a quirk- something he only did because he was excited or maybe upset. The toe-walking was not something he did all of the time and like the head-banging, I knew of children who toe-walked who were not autistic. Then there was the fact that if we called his name he never stopped what he was doing to look up at us. Never looked into our eyes and said “what Mom?” or “what Dad?” This I chalked up to his personality- I thought he was single-minded in his focus- he was doing whatever he wanted to do and didn’t want to be bothered. I thought he was just stubborn. What ultimately led me to stop making excuses for these behaviors was his language. Jack had such a great vocabulary at age two that I thought for sure he would be conversing with us in complete sentences by the time he was 2 1/2. Instead- his language development was confusing to me. He would rarely use his language functionally to indicate to me what he wanted. He also didn’t seem to understand what I was saying to him- couldn’t carry out a simple one-step command or understand the concept of “first this- then that” (and believe me, as a parent that concept is a lifesaver). Yet he was a perfect mimic and would sometimes repeat words or phrases using spot-on grammar. A waiter in a restaurant might bring him his food and he would say, “oh, thank you so much,” or Maggie’s pacifier would fall to the floor and he would say, “uh-oh- she dropped her paci!” How is it possible he could be using perfect past tense in one sentence and yet not be able to tell me if he wanted milk or juice to drink? What I didn’t understand at the time was that it wasn’t Jack speaking. It was me- my voice, my words, my phrases that he was memorizing and mimicking without learning the language in the more “natural” way that most kids do. All I knew then was that something wasn’t quite right.

It was the night before Jack’s two and a half year pediatrician appointment and I happened to see that there was a rerun on Oprah about children with autism. I felt compelled to tape it and watched it after the kids went to bed. Some of the things the parents talked about on the show didn’t sound like Jack at all. Others hit a nerve. For the most part though I believed that maybe Jack’s only problem at this point was some sort of speech delay- not autism. When the show was over I decided to go on the internet and research the language development of 2 1/2 year olds. I wanted to know if there was a language delay I should bring up with my doctor. I started searching and found a description under a link on google that said- “my 2 1/2 year old answers my questions by repeating it- should I be concerned?” I thought- yes! That’s exactly what Jack does! If I should say to him, “Jack, where’s your truck?” He would respond, “where’s truck, where’s truck.” It felt like maybe I was about to get some answers- that this was something that other 2 1/2 year olds did. When I clicked on the link the website described something called echolalia. “Ok”- I thought, sounds harmless enough. Until the part came that linked echolalia to autism spectrum disorders. And that was it- my heart sank. In that moment- I knew. There was no more denying what that pit in my stomach had been telling me for months. Jack had an ASD.

Next came the hard part. I had to explain to Brian what I was thinking. I had to tell him that the next day I was planning on telling our pediatrician that I thought Jack might have autism. I had to do to him what had just happened to me and completely turn his world upside down. At first he tried to make me feel better- convince me that there was a rational and less scary explanation for everything. I made him sit down at the computer with me and showed him the checklists I had found- the M-Chat, CARS (child autism rating scale). Up to this point I had thought of a child with autism as someone who had no language- who would never make eye contact or hug- who would rock in the corner all day. I had no idea about the full range of behaviors that were indicators of an ASD (autism spectrum disorder). So much of what I was reading now sounded like Jack. Brian just couldn’t wrap his brain around it at first. I kept pushing it and pushing him to think the way I was now thinking and finally I remember him saying- “why do you want this to be true?” He didn’t say it in a mean way- I think he was just wondering why I was now pushing full speed ahead- trying to convince him of this terrible thing. But it made me think- “do I want this to be true?” “Am I trying to create this reality?” Because if this is not the explanation is the truth that all of Jack’s problems are because of me? Because I was a complete and total failure as a mother? What if the doctor said there was no merit to my fears? Could I be so unbelievably selfish that I would rather believe my child has autism than to face my own shortcomings as a mom? I didn’t think that could be the case but I decided in that moment that I didn’t want anyone else to know just yet what we were thinking about Jack. I felt such shame at the thought that other people might think I was pushing this diagnosis as a cover for my failings. In the end, I remember saying to Brian- “I don’t want this to be true- but I’m his mother and please believe me when I tell you that something isn’t right.” I have heard so many stories of parents who refuse to accept that there might be something “wrong” with their child. Of husbands who “won’t allow” their wives to seek help or parents who won’t accept “the label” and therefore all of the help that comes with it. I’m one of the luckier ones- because ultimately Brian supported my decision to talk to our pediatrician. The only thing he asked me to do was to not come right out and say- “I think Jack might have autism.” He asked me to share all of my concerns about Jack’s behavior and development and allow the pediatrician to draw her own conclusions. I agreed that was a good idea.

The next day I have never felt so nervous. My hands were shaking, my stomach was churning- in some ways it would be so much easier not to say anything. To tell the doctor that Jack was doing great and to let the appointment end and go back to pretending that everything was fine. Instead, I forced myself to broach the topic with the pediatrician. As I started sharing my concerns she grew very serious and started rapidly taking notes. Finally she looked up at me and said- “so what are you thinking? An autism spectrum disorder?” It was on the table. “Yes,” I said, “that’s what I’m worried about.” She agreed it would be a good idea to have him evaluated.

From that point on things moved pretty quickly. I had to explain my concerns about Jack over and over- to the intake person at the evaluating agency, the county service coordinator, the speech and special education evaluators, the occupational therapist, and the child psychologist. I set up appointments with each of them to evaluate Jack and waited for the day of the first one to come. In the meantime I would study every thing Jack did- every nuance of his behavior and speech. A sign of autism here- a sign of hope there. I couldn’t believe it was possible that he was really incapable of interacting with me- of answering simple questions he once did. I remember watching a video of him when he was maybe 14 or 15 months old. You can hear my voice behind the camera asking, “what’s your name?” and his response in a little proud baby voice, “Jack!” I realized with despair that I couldn’t remember the last time he had answered that question. Somehow over the last year he had started slipping away from us- becoming more and more locked within himself. One day I sat on the couch in the den and watched him methodically pushing all of his cars into a perfect straight line. “Hey buddy?” I tried to get his attention. “Can you look at me pal?” “Can you tell me your name?” “What’s your name bud?” “Please baby, tell Mommy your name.” For some reason I convinced myself that if I could just get him to look up- to look at me and say “Jack” that everything would be ok. That this would all turn out to be just a terrible mistake. I got on my knees in front of him- trying to command his attention- begging him to tell me his name. Nothing. No- not nothing. He eventually started to scream and cry. I stopped asking the question he would not or could not answer- and I wept.

The day the first evaluator came- for speech- I was still hoping that maybe this was all a mistake- that maybe I was overreacting and this woman was about to tell me I was crazy. When she finished her testing I tried to get her to tell me what she was thinking. She looked at me and said- very matter of fact- “Well- I can’t make a diagnosis- but there are definitely some major problems here.” I held it together long enough to see her out and put my kids down for their naps. Then I crawled under my covers and cried my eyes out. It was hard for me to get back out of bed that day and continue to pretend that everything was o.k. I still had to get through three more evaluations before there was an official diagnosis.

By the time the child psychologist came I had seen enough and done enough of my own research to expect that Jack’s diagnosis would be PDD-NOS (pervasive developmental disorder- not otherwise specified). As if to confirm what we already pretty much knew Jack spent the first half-hour of the evaluation pushing the same car back and forth while singing one line from a Wiggles’ song “toot toot chugga chugga big red car” over and over again. A part of me wanted to laugh (if only not to cry)- I looked at Brian and could tell he was thinking the same thing- it was as if Jack was pulling a page out of the “autism playbook”- if the psychologist was filming this scene she could play it as exhibit one in “how to spot a child with an autism spectrum disorder.” The rest of the evaluation revealed other problems that we had never really thought about before- the fact that Jack never mimicked adult behaviors (pretending to talk on the phone, cooking in the kitchen, etc) or played pretend. That he never sought us out to show us something he did, or made, or ask us to interact with him. That was hard for me to swallow at first. “But he brings me toys a lot!” I remember saying to the psychologist. “Yes- but does he bring them to you for you to play with him or for you to just fix something for him?” she asked. It seemed so weird that she knew that and she was right- the only time he ever came to me was if a car he was playing with was broken- and then he would come and push it into my hand as an indication that he wanted me to fix it. He never tried to get Brian and I to play with him. As if to demonstrate, when the psychologist put out a ball for him to play with Jack picked it up and began throwing it at the couch saying, “play catch play catch play catch.” Brian and I were no further than a foot away from him- yet he never turned to either one of us, to look us in the eye and say “play catch, Mom?” or “play catch, Dad?” We had jumped right in and said to him, “yeah sure buddy, we’ll play catch with you!” without stopping to even notice at first that he never actually tried to engage us directly. It was as if the veil was finally lifted and we could see our little boy and all of the challenges that lay before him clearly.

Our story doesn’t end there. There were more meetings and forms, evaluations and doctors. We began the process of early intervention and finding time to schedule twenty-one hours of intensive therapy into the life of a 2 1/2 year old. From 18 hours of ABA (applied behavioral analysis) to speech and occupational therapy- we had 8 different therapists coming into our home to work with Jack from eight o’clock in the morning until five o’clock at night. The challenges of that time and the miracles that were worked in Jack’s life seem like another story for another time. But this is at least part of “my autism story” and one of the reasons why I walk. The other reason is for the estimated 1.5 million Americans (and all children and adults worldwide) affected by autism and the thousands of children who will be if we don’t do something to stop this terrible disorder.

Thank You!

2008-10-06T12:55:00.000-07:00

With the help of so many wonderful people and businesses we were able to raise $7,000 at Lily Flanagan's on Saturday night and are on pace to raise over $20,000 total for Autism Speaks this year!

The kindness and generosity of friends, family, businesses- even complete strangers, never ceases to amaze me. Too often in this world we are faced with hearing about the misdeeds, greed, and selfishness of others. We hear so much about the bad that sometimes we forget to celebrate the unbelievably good. This weekend was one of those times that reminded me about the generosity of spirit that so many people demonstrate. From all the people who attended our fundraiser and spent their hard-earned money on raffles and auction items, to the friends and family who gave so much of their time, energy, and effort, to plan and organize such a big event. I know why Brian and I fight to raise money for Autism Speaks- and I know that our cause does not have to be everyone's cause- and yet so many of you have made it your cause and have fought every bit as hard for it as we have. For that, we will be forever grateful.

I want to close with something that happened to me yesterday that demonstrates how wonderful people in this world can be. A man and his wife came up to me at All-American Burger after the walk and asked me about my Walk Now for Autism t-shirt. They then went to their car and came back with a check for $100 for Autism Speaks. They didn't know me, they didn't know my son Jack and yet they wanted to help- they wanted to make a difference. And it is people like that and everyone else who contributed to this event who will help to make a difference in the lives of children and their families living with autism. Thank you again from the bottom of our hearts!

Tribute to Jack's Teachers- Early Intervention "Graduation"

2008-08-29T15:18:00.000-07:00

First of all, Brian and I would like to thank all of you for coming and for supporting us throughout this past year. All of your thoughts, your prayers, and your help have meant more to us than any of you could ever know. Last year, at Christmas time, my mom told me that she believed this year would be a miraculous one for our family. She was absolutely right- and none of it would have been possible without all of you.

A year ago this month I was filling out paperwork for a preschool that Brian and I planned on sending Jack to in the fall. There was a section where I had to check off characteristics that applied to Jack. One of the words in that section was happy. I remember looking quickly at that word- my pen poised to strike a check when I paused- …happy? Jack was many things- but happy wasn’t one of them. I didn’t know what to do. How could I not describe my own child as happy? Maybe my judgment was off. I would wait until Brian came home from work and ask for a second opinion. When Brian came home later that evening he agreed with me- it would be dishonest to describe Jack as a happy child. It wasn’t that he was necessarily unhappy- just not quite happy.

My concerns about Jack’s development- which had been a steady whisper- soon became a deafening roar. It was not long after this that Jack was diagnosed with PDD-NOS. By September of 2007, Jack’s team came into our lives and began their amazing and life changing work. Jack’s ABA therapists- Christine, Kara, Katrina, Rona, Thalia; his speech therapist- Danielle, Pete, his occupational therapist; and last but most certainly not least, our wonderful team leader, Nicole. These loving and talented teachers were the miracle workers in our son’s life. None of this would have been possible without them and that is a debt that is impossible to repay. How can you thank a group of people for giving you back your child? In another lifetime I was a teacher- and that job felt good, and it felt important- but nothing, absolutely nothing compares to what these people do for little boys and girls and their families on a daily basis. The work is most definitely not always easy. There was hitting and screaming- shouts of “No Rona!” “No Kara,” “No everybody!” not uncommon. There were times when our little guy could make things very difficult- to say the least. And yet through it all, these teachers persevered and remained committed and focused on bringing about the wonderful changes that we have all witnessed.

Many parents remember their child’s first milestones. The first time they sit up, or eat food; the first time they crawl, or walk. For me, there are other milestones I will never forget. The first time Jack played peek-a-boo with Maggie, the first time he told her to stay away from his cars rather than hitting her, the first time he spoke a complete sentence, was able to answer a question, or looked at me the second I called his name. The first time I realized the house was full of noise and chatter and not silence and screaming. The first time I saw him run into his Daddy’s arms and say, “I love you.”

One of my best friends, Melissa was constantly with Jack and I before his diagnosis. At the same time Jack received his diagnosis and began treatment Melissa’s baby was born prematurely and she and I could not spend any time together with our children for over 6 months. She was in a unique position to have known Jack so well prior to him receiving treatment but to not see or interact with him at all during the first 6 months of his therapy. Not long after Melissa was able to spend time with Jack again she said something to me that I will never forget. She told me- “all of the things that made Jack, Jack were still there. He was still quintessentially the same child- except now- he was happy.”

Brian and I are unbelievably blessed. We are unbelievably grateful, and we are unbelievably proud of our child and all that he has accomplished with the help of so many gifted people.