My personal letter in favor of autism awareness

In order to support my petition for a government sponsored autism awareness campaign, I have mailed letters to Richard Sorian, Assistant Secretary of the U.S. Department of Health & Human Services (HSS), and to Thomas R. Frieden, Director, Centers for Disease Control and Prevention (CDC). If you have already signed the petition, but would like to do more, I encourage you to address your own letter to both HSS and the CDC. Your personal journey is important, and we all deserve to be heard.

Here is a copy of my letter:

December 15, 2011

Dear Members,

                 My name is Paula C* and I am the parent of a four-year old boy who has autism. I have created an online petition at www.change.org where I ask that you and your respective departments take the initiative to lead a national autism awareness campaign. The misconception in our society regarding autism disorders often results in delayed diagnosis, families restricted to enjoy public life, and employment discrimination. The time has come for our government to take responsibility in spreading awareness. This difficult task has been left for too long to parents and non-profit organizations, both groups with the most wonderful intentions, but with very limited resources to achieve such an important goal. This is how this lack of public awareness and education has affected my family.

My son AJ has a mild form of autism which affects his ability to speak, to socialize with children his age, and to tolerate public environments.  Sensory integration challenges keep him from eating a varied diet, as he rejects certain food textures, and his limited communication skills keep him from telling me or my husband how he feels, what bothers him, and how we can make it better. Even with all these challenges, my son is perceived as “normal” to random people who briefly meet him each day, people who are not aware that autism is a spectrum disorder. My son is intelligent, and whenever others hear from his diagnosis, the information comes as a complete shock. I understand their feelings, because that’s how I felt when my son first started showing signs and symptoms. His diagnosis was delayed by nine months, because I waited for his speech development to “catch up,” and because he did not “look” autistic. The mistake was that my perception of autism symptoms was wrong. By doing that, I wasted valuable time in getting him the services he desperately needed.

Similar misconceptions make other people believe that my son’s public tantrums are the result of poor discipline and education at home. Nothing could be further away from the truth. Kids on the autism spectrum lack the skills to communicate what bothers them, and they rely on crying and yelling to attract their parents’ attention, and to ask for help. In addition to that, many kids on the spectrum are hyper sensitive to smell, noises, and sights, which overwhelms them in public to the point of a meltdown, no matter how old they are, or how they are supposed to be behaving. This issue affects my family life and the lives of many parents of kids with autism, as we often feel unwelcome in our society. Our families are spurned in restaurants, airports, airplanes, malls, and even in places of worship. We are left to either stay at home, dealing with our kids’ disabilities, or to suffer in public in a society that has no tolerance for kids like my own. As a parent, I worry endlessly about my son’s chances to be accepted in our society.

Our society’s lack of acceptance to neuro-diversity reduces my child opportunities and those of others like him to thrive as he grows older, to be accepted, and even to gain employment. When most people in our country think of autism, the first thought that crosses their minds is the image of Dustin Hoffman and the movie “Rain Man.” This misconception is both wrong and unacceptable, as it creates a wrong idea regarding what a person with autism can and cannot do. Members in our society need to know that individuals with autism can perform meaningful work with small and appropriate accommodations. As a matter of fact, many of them have valuable skills that people without autism do not have. They may have great skills such as, good memory, meticulous organization, and the ability to follow a plan to completion, among others. Our society needs to be educated and made aware of the realities of autism. I understand that the U.S. Department is currently working with important campaigns such as health coverage, bullying, and food safety. Please add autism awareness and tolerance to this list. It is extremely necessary.

The text of the online petition, which includes text from this letter, is listed below. I hope that by now you have received many more e-mails from people who have pledged their support to this necessary cause. We are all counting on you.

Please do not hesitate to contact me with any questions or comments. I look forward to your feedback.

Sincerely,

PC

My plight for tolerance

As I mentioned before, going out with AJ has to be one of the most difficult things to manage, and that includes travel, and vacations. Two years ago, the looks and whispers of judgmental people would easily put me through tears, but luckily, I seem to have developed a “ticker skin.” That does not mean, however, that it has stopped bothering me.

Last October, AJ and I arrived to the Minneapolis/St. Paul Airport where we were going to board on a plane to go to Florida. My in-laws are dispersed all over the country, and we visit often, so AJ has developed his own travel routine, and he often does quite well. That day, something was different. Since we were travelling without my husband, I decided to check in our luggage with the intent to free my hands for toddler time. I completely forgot that AJ LOVES to carry his own bag, which somehow he finds very soothing. The rest is (bad) history.

The child who often follows his airline counter/security line/gate routine had lost an important piece of his travel routine, and started crying inconsolably all the way to the TSA agent. Three minutes of a crying toddler in the security line, and I heard the woman behind me claim “today is going to be a long day,” and ended her comment with a sigh. Knowing that she was referring to AJ, I turned around, played the naïve part, and asked her why. She said, “Well, your child is going to be crying all the way to Florida,” to what I asked, “How do you know all that?” She went on to tell me that it was “obvious” since he had been crying for quite a while, to what I replied by dropping the “A-bomb”[my child has autism], which has the power to make people feel stupid about how they are feeling about my child.

Color left her face, and to make her feel better, I suggested that in the future, instead of making hurtful comments about other kids’ behaviors, she should focus on the fact that at the end of the day, she gets to go home without the screaming child. She quickly mentioned that she works with kids on the spectrum, and I turned back around, hoping not to see her face again.

Past security, AJ fell back into his airport routine and by the time we reached our gate, he was back to his charming self. I am sure he disappointed our not so nice passenger by falling asleep as soon as our plane departed.

Our society needs to be more tolerant of all children. I don’t want people to be patient with my child because he has autism, but because children deserve love and patience. As adults, we need to remember that we were all kids before, and that shaming a parent for their child’s behavior is not the answer.

Please promote tolerance for children!

Thank you.

Paula

Sensory Integration Disorder and Public Outings

I tried to blog about something recent, and felt that I couldn’t do it without acknowledging my past…

When AJ was diagnosed with autism I worried so much about his future, that I didn’t have time to think and worry about the present, and when public outings became a nightmare, reality quickly kicked in.

AJ was two years old and he couldn’t stop crying at the mall, the grocery store, and even at fast food restaurants. The noise, the lights, the smells, and the lack of the sameness that kids on the spectrum crave, were too much to handle for him. At that time, I didn’t have the tools to help him succeed in those environments, and I decided to leave him at home. After his diagnosis, behavior therapies started, and I also read a lot of books. My husband and I had the help of a wonderful behaviorist, who taught us how to work with AJ, from changing a diaper “tantrum free” to help him tolerate a visit to our local grocery store.

We learned that AJ needed to know beforehand what was going to happen, how long it would take, what we were going to do, and that he always needed a reward to make him understand that cooperating with his mommy was always a good idea. AJ didn’t spoke his first words until he was about thirty-months-old, and prior to that, he couldn’t understand spoken language either, so we were taught to communicate with signs and pictures.

All of this was necessary for the simplest, shortest errands, and while it can be frustrating, the plan started to work. Each time I made it home from the store without a temper tantrum felt as if I had won a brutal battle. Today, AJ does extremely well at grocery stores, and those “super” stores where you can find everything! He rarely cries, but along with his developmental delays, there is the delay of experiencing his “terrible twos” when he is already four-years-old!

AJ cannot discriminate sensory input. He hears and sees everything, for his brain cannot decide what it is important and what it is not. Because of this, he gets extremely overwhelmed, and he tries to cope by running, hiding or crashing against the contents of a store’s clothing rack. Have a mentioned that he rarely feels pain? Anyways, these behaviors, while not ideal, are much better than screaming, and allow me to take him to the store and get him a pair of shoes. I feel quite proud of my small mall visits, and then there is that person who looks at me as if I must be the worst possible mom in this country.

In September, my sister-in-law overheard a woman at JC Penney’s say that AJ’s behavior was the reason she didn’t like kids. Note that said behavior was just that of a typical kid being silly with his reflection in a mirror. When the woman in question learned of my son’s diagnosis, she quickly apologized, but our feelings were already hurt. Last week, while we went out for a quick bite, a gentleman behind us in line was so distressed by AJ’s fake cries for a cookie I wouldn’t buy, that he decided to leave the restaurant and go next door.

Attitudes like this when we go out are fairly common, and while I don’t like them, they don’t hurt me as much anymore. Those people don’t know how far we have become in less than two years. They don’t know that AJ is worth all the effort, that he is doing so well when compared to a year ago, and they don’t realize, how proud I am of my son.

Thanks for reading!

Paula

Shopping with AJ

I’ve mentioned in previous posts how proud I felt that AJ has been managing public outings better, and I remembered about a year ago about an event that marks the turning point for us between, “I can’t go shopping with AJ” and “wait a second, this might be doable!”

Here is what I wrote on 12/29/10 about our a successful shopping trip with AJ:

It’s been almost four months since we moved to Massachusetts and we’re still trying to settle and make this apartment feel like a home. There were days when we didn’t even know if we would stay in this apartment complex, due to our neighbors’ noise complaints. Now that the issue is behind us with the help of a sleep aid, I can finally focus in putting the finishing touches in our living room.

I wanted to get a few things, and with the intent to save some money, I headed to Ikea. I usually dread to take my three-year-old son, AJ, shopping, but daddy was working and I had no choice but to take him with me. Shopping with AJ, as it’s common with many kids with autism, is a huge challenge. The many choices in stores, the crowds, the bright lights, and the lack of sameness, trigger a sensory overload that causes AJ to have a meltdown. Armed with a positive attitude and thinking that we have tackled trips to similar stores in the past, I prepared AJ for the adventure. I told him that we were going for a long ride, that we would visit a furniture store, and that mommy needed to buy some candles, and tables for the living room.

After driving for over an hour, we made it to the store and AJ was delighted to ride on the escalator to the second floor. As we reached the top, “happy” came to an end. While I wanted to browse the pieces in the carefully decorated model rooms, AJ was obsessed with the arrows on the floor; crying quickly followed, and the usual stares of people begin…sigh. I kneeled on the floor and I asked AJ, “Remember when mommy told you that we needed to get two tables for the living room?” His cries told me that he either didn’t or that at this point in time he didn’t care. I hugged him; I patted his back, rocked him, and whispered in his ear that it will all be ok. A few minutes went by, he calmed down and I moved to plan B: favorite cartoon videos online, courtesy of my phone application and internet connection. AJ was wearing my earphones which were too big for him and were only held in place by his winter hat and scarf. To those people looking, he probably seemed like a very spoiled child; for why should a child who just threw a temper tantrum over nothing be rewarded with a favorite show?

With AJ briefly focused on his video clip, I was able to keep browsing for a few minutes even when he was still trying to pull me to where he really wanted to be. The kid’s area was a big hit as he found a soft, squishy ball to hold on to for dear life. He also sat on a little chair and seemed to start thinking “perhaps being in this store is not so bad after all.”

We reached the stairs to go down to the actual market place. Down there, I could no longer connect to the internet, but AJ seemed to have settled (thank God). I found a shopping cart, and I picked the tables that I so diligently had come looking for. AJ was excited to hear that we would ride the elevator, which was an improvement from only a few months ago when the vehicle made him quite dizzy. By then I was feeling so proud of my boy; he was yelling “jungle! I want more jungle!” as we passed by the tree nursery area. We finished shopping and AJ behaved very well all the way back home; his only request was that I sang to him “Jingle Bells!”

Just last week I tried and failed miserably to get a Christmas present for my husband at the mall. As usual, the mall had the power to make AJ’s muscles limp and he just wanted to be on the floor. The next step for him was to cry until I left the mall out the nearest exit despite the fact that my car was parked on the opposite side. You may be wondering why I keep doing it. Often times I wonder myself. It is a mix of hope that maybe this time it won’t be so hard. In a very naive way, I think of how much he has improved at home after all the therapies and I leave the house thinking that now he is ready for the big and crowded world out there.

Well often times he is not; but after this “décor bound” trip, I realized that I HAVE to keep trying. I understood that I have to be strong enough against people looks and my own earache, which sets off the moment AJ starts crying in his high-pitched voice. I must keep trying because as he gets into the store routine it all gets better. Trying is what gave me the tools to learn what worked and what didn’t  Trying showed me to care less about what strangers think and about the way they look at us. I learned not to care if they judge my parenting skills and how they probably believe that I’m spoiling my child. Now I KNOW that I am doing what is right for my son, or at least know that I am doing my very best.

Please don’t give up on your special needs child

Paula

 

Letter to our neighbors

In September of 2010, my family and I moved across the state line from New Hampshire to Massachusetts, so that we could be closer to my husband’s job. AJ had been receiving early intervention therapy, and he seemed to be doing quite well. The day we moved to this second floor apartment, I spoke to the neighbor on the floor right below us, and I told her about AJ’s challenges, and that I would appreciate if she spoke to me directly regarding any issues in our unit. Well, the next time I heard from any issues, word came from my landlord, who had received noise complaints from our apartment. While I was embarrassed about it, and also upset with my neighbor for not talking to me directly, I felt that the rest of my neighbors deserved an explanation, so I wrote the following letter:

October 1, 2010

Dear Neighbors:

We have been informed that noise complaints were received by the management office regarding running, crying, and screaming in our apartment during quiet hours, from 10pm to 6am. We write to apologize to all of you who have been affected by the noise and that we are doing the best that we can to solve this issue.

While we are not trying to justify ourselves, we wanted to let you know the cause. Our 2-year-old son AJ suffers from an Autism Spectrum Disorder. Kids on this spectrum rely on very rigid and strict routines to make sense of the world around them. Moving here has “shocked” AJ, causing a disruption in his sleep schedule and all daily patterns. This means that AJ takes his naps during the day and stays awake at night. We have tried numerous things to help him with this. We sometimes keep him from taking naps during the day which makes him very upset. Most nights since we moved here, we have allowed him to sleep in our bed, if only to keep him from crying. A couple of times, we have taken him on late car rides when we know that he is full of energy and will be unable to fall sleep. The next step is to give AJ melatonin which is a hormonal supplement that should help regulate his sleep cycle.

Please note that we don’t take these complaints lightly. We struggle on a daily basis dealing with his disability which can be truly challenging. AJ lines up all types of things, from eggs out of the refrigerator to shampoo bottles inside the bathroom. AJ likes to stack cars one on top of the other and becomes frustrated when (of course) the cars won’t stay the way he wants them to be. Telling him that cars have wheels and that they will continue to fall down is something that his brain cannot process.

To make things worse, the Early Intervention program in Massachusetts has not started yet, which means that AJ has not received a single hour of therapy from the 10 hours a week he received while we lived in NH. We sincerely apologize for all the noise and disruption to your lives. I know you are all hard-working individuals and deserve to rest. Please note that AJ’s therapies will start soon and that, added to the melatonin should calm him down promptly. In the mean time, we will do our best to keep the noise down. If all fails, we are open to the possibility of moving out.

If you have any questions, please don’t hesitate to contact us directly.

Sincerely,

Your neighbors at Apt. #3

From Regrets to Forgiveness

I vividly remember that when AJ was diagnosed with autism I went through a phase where I regretted previous decisions, and I blamed myself for not noticing the signs any sooner. I would spend hours before I went to bed asking myself all sorts of questions, those of the useless “what if?” type. “What if I had stayed in New York City? What if I AJ had been treated by NYC early intervention team instead of moving to New Hampshire? What if I had worked fewer hours and had spent more time at home when he was a baby? Would I have noticed that something was wrong? What if I had followed Toni Braxton’s advice in her Autism Speaks’ ad, where she asks parents to learn the [autism] signs?

These questions troubled me for many months, but eventually, I forgave myself. First of all, I had been looking for the wrong signs. AJ’s autism does not look like the “cookie cutter” idea that I had of autism. I thought that kids on the spectrum were detached from their mothers, that they didn’t laugh, and that they didn’t play peek-a-boo. Turns out, that at 18 months old, AJ was supposed to point at objects, to draw my intention to things he felt where interesting, and to have a growing vocabulary. None of the pediatricians who saw AJ since he was born ever mentioned any concerns about this. The generic developmental checklist that they made me fill out at each visit asked me about AJ’s development of gross motor skills, but left out questions about his social skills.

I also forgave myself once I realized that according to the Centers for Disease Control and Prevention (CDC) guidelines, as a parent, I did everything I had to do. Their website advises parents to take their children to the doctor at 9, 18, and 24 months of age, where the doctor would perform a developmental screening, and would monitor for signs of developmental disabilities. The site further advises that additional developmental screening is available if the child meets their criteria of a child “at high risk for autism.”  The CDC defines that children at high risk are those who have a sibling with autism, who were born as preterm or low weight, and those who have shown behavior problems.  AJ does not meet these criteria, and the temper tantrums that we reported to his doctors, obviously did not raise a concern. When AJ was 18-months-old, his pediatrician dismissed my concerns regarding his lack of spoken language. She said that his speech was delayed because of our bilingual household, and as I insisted, she reluctantly signed an early intervention referral.

I gave these facts some thought and I concluded that the CDC and my son’s pediatricians failed my child, not me. The CDC advises that “if your child’s doctor does not routinely check your child with this type of developmental screening test” parents should “ask that it be done”.  The CDC also expects parents to know all of this information from their website, but they do not take into consideration that there are parents out there who have no access to the internet. Those parents are left to trust their children’s pediatricians, but unfortunately, as in my case, sometimes doctors do not follow CDC guidelines either.

Today’s autism awareness campaigns look beautiful in paper, but do little to raise serious awareness of the disorder. That’s why I’ve created an online petition to ask that the CDC and the Department of Health & Human Services sponsor an effective autism awareness campaign. For more information about this petition, please click here.

I look forward to your support!

Thanks!

Paula

I Confess…

I confess…

The thoughts on this post are the reason my blog is called “confessions.” My son AJ motivates me to be better, but there have been days when I was not feeling so upbeat about motherhood. Here are some confessions from days just like that.

I confess that…

…when AJ was born, I didn’t feel that mom-child bond until he was about one-week-old. I remember looking at him and thinking that I loved him, and that he was gorgeous, but thinking that I didn’t feel that he was mine.

…when he was four-months-old, and I went back to work, I felt that work was a much-needed break! I don’t remember ever being as tired as I was during those first few months with new baby at home! Little did I know then that by the time he turned two-years-old, I would have to choose to stay home with him to replicate the work and routines of his therapists.

…I didn’t accept graciously AJ’s autism diagnosis. I challenged God’s will, I wished I were dead, I wished that we were all dead, even when the thought of taking my own life never crossed my mind. I felt bitter, hopeless, lonely, and helpless. I felt for the first time the need to have people feeling pity on me. I was angry, and I hated autism, yet I saw my son, and I could feel nothing but love. I remember wondering how this was possible.

…AJ’s autism diagnosis was horrible in my marriage. While I tried to heal by taking action, my husband got stuck for months in denial. I confess that I resented him for it, and that the only thing that saved us was perhaps my fear to raise our son on my own. Today, I am glad that we got over that.

…I was mad at my side of the family. They heard the news, but it was as if the meaning of the diagnosis never sank in their minds. They couldn’t see past the fact that my son was loved, and cute, and they pretended as if time would make him perfect again.

…I was furious when a loved one, lectured me for dropping two college courses within a month of AJ’s diagnosis. My darling, I am sorry, but I just couldn’t focus to read about politics, when I had eight books about autism waiting to be read on my nightstand.

…I was briefly angry with a relative, whose precious son also has autism. She kept his diagnosis a secret for over ten years, and I felt that if she had talked more about it, I would have been more aware of the signs, and that I would have looked for help sooner.

…the taboo that my Latino culture has created around autism upsets me to no end. I confess that I often worry about the children who are missing out on services over this; and, that I’ve been angry at their parents who rather tag their children as brats, than to say that they are on the autism spectrum.

…it hurts my feelings that some of my “pre-diagnosis” friends didn’t stay around once my son was diagnosed with autism.

Finally, I confess that I used to wish that intolerant adults out there could learn first hand what it means to parent a child with autism. I quickly changed my mind, however, for even in times of sorrow, I knew that if my wish was granted, the punishment would had been for the child and not the intolerant adult.

Welcome to my world!

Paula

Welcome to my blog!

Welcome to my blog!

My name is Paula; to introduce myself let me tell you that I am a wife, a college student, and the parent of a wonderful four-year old boy, who happens to be diagnosed with autism.

I decided to write this blog with the intent to create awareness, not so much about the disorder, but to explain some of the very real, yet unspoken challenges that being the parent of a child with autism presents. We all face the initial heartbreak that comes with the diagnosis, and the responsibility to advocate for our children, but above all, we struggle with a general community that does not understand what we are going through. This general community is the immense group of people whose lives have not been touched personally by autism. They are our loving friends and relatives, our neighbors, and the unknown people we see in the street each day. The attitude of people in this last group is as varied as the autism spectrum itself. There are some strangers who have been friendly to us, but there are others who are rude, and intolerant, and who make the world and unwelcoming place for my child, and our family.

With this blog I wish to share my stories with other parents, to increase autism awareness, to keep my loved ones informed, in order to make them understand what our lives really are. It’s difficult to explain what “our” autism is, but one story at the time, we can all get the idea!

I hope that you visit often

Thank you!

Paula