Saturday, November 14, 2009

Special Moments, Gratitude and Autism

As I headed to our monthly team meeting with my son's teachers and therapists, I didn't have much on the agenda. This year, the team's open communication and investment in my son's progress is a comforting feeling. I was more concerned about how my son will react (after the meeting) when I see him for the annual Thanksgiving turkey trot around the school perimeter. This event is simply created to help food pantries with their food supply. Each child who participates brings in 1 canned good to help. Little did I realize that the day was going to bring with it many surprises.

The team meeting went well. After, I waited for my son's class to gather outside, and saw the shine of a familiar dimple. My son was reserved (as he usually is upon seeing me at school) and didn't want me to make too much of it. In seeing the shine of his dimple, I knew he was a little excited for our "race". The gobble sounded and off I went to run with my precious little turkey. He is fast! In weaving in and out of children, I had a tough time keeping up with him. It was a bit brisk, but that just added to the silliness, as I could feel the cold air creep into the cavities of my lungs. Still, I forged forward, kept up pace, and kept reminding him that I was behind him. Did I mention that I was only one of 4 mothers taking part in the run? With all the other parents on the side-lines, I felt a bit foolish, but I was not going to let my guy down. When my child runs, I run with him. When my child laughs, I laugh with him. When my child loves, I love with him. When my child succeeds, I succeed with him and when my child falls, I will fall with him. Through my actions, I hope my children can hear my message. It was a great moment for both of us.

That's not all folks! I left the school, after the turkey trot. The afternoon provided me the opportunity to look at my e-mail. Many times, e-mail does not convey your true feelings or tone. These non-verbal ques are missed because we are not speaking directly to the person who wrote the e-mail.
I knew something special was up when I saw my son's special ed teacher in my inbox. I quickly opened the note and read (in the excitement it was meant to portray) that my son read his very first book independently. What is even more precious, is that the book happened to be called, Pam's Pals. My name is Pam and I am certain that my little "turkey" that day was enamored by that fact. Not to take anything away from him, but I felt he dedicated his efforts to me. Tears flowed. Such a proud moment.

I said it was a great day. He wasn't through with his greatness... After speaking to my son's paraprofessional for a couple of minutes, she told me this story:

"I have a story about a hand painted tree hung in a hallway of an elementary school to share with you. The children painted leaves to decorate the tree. The leaves were painted all pretty watercolors and looked like real autumn leaves. Every child was asked what they are thankful for and it was to be printed on the leaf that they painted with care. As the para was hanging the leaves in the hallway on the tree, she was reading the usual things that you expect a kindergartner to say... I am thankful for Mom...I am thankful for Dad... I am thankful for my family...etc. One was "I am Thankful for my I-POD", and I almost didn't want to hang it. But then, what appears is a beautiful autumn leaf, carefully painted in watercolor, and it said "I am thankful for Rainbows". That sweet inscription was from your son. You are truly blest."

During this season for giving thanks, "I am thankful for Rainbows". Each color of my rainbow includes: Red:my son, Orange:my daughter, Yellow:my husband, Blue:family, Green:teachers and therapists, Purple:friends.

Happy Thanksgiving! Gobble, Gobble

Sunday, November 8, 2009

Common Sense is different for those with Autism


Society uses the term "common sense" to explain people’s natural and innate actions. Everyone is supposed to have at least a little common sense. It is a gray area to know exactly what common sense is, but it usually equates to good judgment or normality. If a person lacks this characteristic, jokes soon follow.
Common sense can be anything from wearing a coat when the weather is cold, looking at someone when they are speaking, or walking to move from one room to the next. After all, why would you do anything else? It just doesn't make common sense.

A child with autism spectrum disorder experiences, what most of us view as, common sense differently. Texture sensitivities often lead to clothing battles, especially after the weather turns cold. When faced with the choice, common sense for those with autism or "autism" sense will choose the one with the least amount of discomfort, many times preferring the cold to a coat. If you think about it, that does make common sense. When faced with a decision, my choice is based on a weight scale of the least amount of negatives attached to each choice.

Likewise, during a conversation, social challenges make the simple act of eye contact distracting to a person on the autism spectrum. Autism sense requires that individual to look away from the person for the ability to maintain engagement and hear what is said. In other instances, many children with autism have a constant desire for input or feedback to keep focused. Autism sense means taking every opportunity to get that feedback by jumping or running, as the mode of choice, when moving from room to room.

Autism sense is the natural and innate reaction of children on the spectrum with autism. On the surface, one may label it as a lack of common sense. In reality, understanding the reasons behind such behaviors can be the most common sense of all.

Sunday, October 11, 2009

"Autiscally Accommodating" Halloween Costumes


Once again, Halloween is here. As a child, I remember the excitement I had in picking out a costume, wearing it to school and out, trick-or-treating. As an adult, the stress of coming up with a "good" costume and going to spooky parties contributed to my dislike for this tradition. It just wasn't me. After my children were born, these memories of my own childhood gave me a new found excitement for the holiday.
My son,born first, generated such excitement in seeing my little guy dressed up in such cuteness. The first year, he was a pea, second year - a greaser, third year - cowboy (no hat), fourth year - caveman, fifth year - Dracula, sixth year - red crayon. I bet you can't guess what the common denominator in all of these costumes is? Aside from the pea costume (as a baby and still unaware of his autism), these costumes have been well thought out, painfully prepared outfits, "autistically accommodating". Here, I thought I was over stressing out about Halloween because of my own road blocks with the holiday. Believe me, there is no greater pressure than that of trying to create the near impossible. But the near impossible is what occurs when my child's self esteem and feeling of acceptance is on the line.
Wondering what "autiscally accommodating" means? To begin with, there are the texture sensitivities my son endures. There cannot be any scratchy material, no tags, and no stiffness. Have you looked at what the stores offer? You got it...scratchy, tags, stiffness. That leaves out all store bought costumes. Next, we cannot choose a costume that has a mask, hat, or head garnish. Are you wondering what else there is? Yes, me too...every year! Finally, after much deliberation, we come up with a costume that satisfies our "prince", but we continue to be on pins and needles until the actual moment he will wear it. Why, you ask? Because my son is a creature of familiarity and routine. The 1 or 2 times, he will actually have to dress up in his costume is filled with anxiety (for all of us). As the date nears, I usually talk incessantly about the costume and even try to have a dress rehearsal (usually unsuccessful).
The day finally arrives and it is up in the air as to whether or not "the costume" will be worn. At this point, I'm pretty much done with this whole holiday and just want to put it behind me and begin next year's search. I put on my best cheerleading face and put forth my best methods of encouragement as the day unfolds. Amazingly enough, every year my son pulls through, rises to this challenge and enjoys himself. I've only lost another year off of my life but at this point, who is counting anymore?

Bring on the lifeguard!

Monday, September 21, 2009

Autism's Parts, Mothers Meet

As I hostess for a local restaurant, a family walks in with a set of triplets. I look at the mother ("Mom-A"). She looks back at me. We immediately recognize each other. We haven't met through business or mutual friends, we know each other through our sons. They both are on the spectrum for autism and went to the same preschool for early intervention.

At the first realization of our common thread, we weren't quite sure how (or if we even wanted) to acknowledge the reason. Too late to hide, we both broke the awkwardness with more silence than conversation. We didn't need words because our eyes spoke volumes. Our connection was something most other mothers will never feel. I could see the feeling of struggle, of worry, and emotional solitude pass through this mothers gaze.

While seating her family, we quickly caught up on each of our son's progress. As I passed out each menu, I bent down to say hello to this special child. With a bit of prompting, the little boy greeted me back. What a glorious sound to hear. Understanding the hard work behind the task I just witnessed, it brought me back to the time when my own son struggled with each vowel and consonant uttered. Though still in need of hiking up the hill farther, it was certain (to me) that he would reach the top. In some respects, he already has and is simply trudging up another hill.

After my shift was over, I exchanged information with "Mom-A". A week passes and I have another ironic encounter with "Mom-A". This time, I have my son with me and she is able to see his progress. Instantly, I see the joy she had the previous week, drain from her and become a feeling of solitude. My son is not as severely afflicted as "Mom-A's" son. My heart ached for her. I knew that feeling when I would be at a birthday party or school function with my son's class (most typical peers). It was the feeling of wishing my son could play or run or hop or act as the other kids and then hating myself for having such a selfish thought. This mother was comparing what my son could do to what her son couldn't. I knew it and I knew what she longed for, and I knew how feeling it would torture her as if she wasn't loving him enough for who he was. It is irrational to be so hard on ourselves but that feeling is easier than allowing ourselves off the "hook" during such times of inadequacies.

My next encounter happened while I was waiting for my daughter to finish a gymnastics class at the local YMCA. I was making casual conversation with an employee and talking about my son and the difficulties in advocating. Feeling compelled to join in, a mother ("Mom-B") sitting across from me apologized for the interruption but acknowledged her struggle with the school system as well. Her 7 year old son is on the spectrum for autism and pulled him from the system in order to be certain he would get the services he was desperately in need of. She praised my efforts and we look forward to our "mini" support time in the coming weeks.

After thinking about this conversation, I smiled at how driven "Mom-B" was to add to what I was talking about. It was exactly what I would have done. There are so many times where we can't join a topic of conversation because we haven't experienced the same things that other parents have. In this case, when "Mom-B" finally hears the connection of her experience with mine, she had to take the leap. I understand that need for validation and camaraderie.

The two encounters I had with mothers of autistic children are very different. I'm not sure why having such encounters left me with a good feeling but I venture to guess it has something to do with the feeling of togetherness and that the whole is only as good as the sum of its parts. A quote that can be deciphered a number of ways, but this is the way I think of it:

Autism (and all that,that means) can be dealt with if we lean on others who may be in the same circumstance. There is power in numbers and a sense control takes over when we (the parents) may feel like our control has been stripped away... Proof that control is still in our reach. We may just need each other to grasp it back.

Monday, September 14, 2009

VMA's, Taylor Swift, and Stripped Moments-Autism


Shocked, Humiliated, and Short-changed...
This is what Taylor Swift may have felt during last nights award ceremony at the 2009 Video Music Awards. I know I felt it along with her.
In continuing my efforts to learn about the interests of the current teen population, I was happy when the young female performer won. After Taylor Swift began to speak of dreaming of that very moment, her "moment" was so rudely interrupted by a person with a different view. I first became appalled , then saddened by the event.
What gives another person the right to judge someone? What gives another person the right to think they are above all others? What gives another person the right to publicly humiliate someone? What gives another person the right ?!!
I sat for the rest of the show upset and uneasy. I thought I should really get a grip on reality. After all, I don't know these people and I was in no way directly affected by the rejection. Then, Beyonce won and, very appropriately and eloquently, gave the floor back to Taylor Swift. It was a great gesture. Unfortunately, I think the moment had already been stripped away.
My mind was so unsettled. I realized that it is because I truly understood what Taylor Swift felt in that "moment". With even more intensity and realization, some of my son's (who is on the Autism Spectrum) moments are stripped away. The reasons may vary and can be just symptomatic of being autistic, yet others(in the future) will occur because of the lack of educational enlightenment. Regardless, it is not fair! I understand that we cannot change what we cannot control, but we can change and impact what we can control (education).
For most parents, there is an assumption early on (before birth) of what your children will accomplish. You assume your child will have a voice and you will hear them call you mommy or daddy. You assume your child will play by himself and with others. You assume that your child will complete tasks independently so you can cheer for them and be the "proud parent". These are moments for parents to enjoy. They are affirmations and "fruits of labor", rewarding parents for their dedication. Did you ever consider or can you even comprehend, that despite all your efforts, these moments could be stripped from your enjoyment pleasure? For parents with children on the autism spectrum, we are stripped of the "typical" developmental moments. Similar to Taylor Swift, we may not get that moment to shine and hear our child call out mommy. Our child is struggling to communicate. What may seem easy to most of us is actually a complicated series of processes and oral motor movements. Those of us lucky enough to experience that first speaking moment or the moment we are called mommy, are usually in a moment all by ourselves because it happened later for our child. Our friends have past that excitement. Though I will admit that my appreciation for such moments may be heightened, it still leaves us in a kind of group that has been "left behind".
This leads me to my autistic son's stripped moments. He is really why I was so upset after seeing VMA winner, Taylor Swift, publicly put down. She worked hard and didn't deserve that kind of treatment. It was like watching my own child up on the stage. Can you just imagine how her parents must have reacted? The theory is that if you work hard, you will be rewarded, accepted, and make people proud. The theory doesn't state that there might be a couple of bad "eggs" that will try to take your thunder away. Most of us do overcome these little nuances, but it doesn't make it right.
I wonder if there will be a Kanye West getting in the way of my son's, self-satisfying, moments? I already despise this imaginary person and worry because I'm not sure how many little nuances we can actually get past without it effecting my son's self-esteem and social placement in society, something that is so difficult for him to work through as it is. I am hoping that my son does not realize that some typical moments his peers enjoy, he has yet to experience. His ignorance, I am certain, is limited in time. Soon (if he hasn't already), he will notice in phys. ed. that his peers are able to play the games better. Soon, he will notice the frustrations of others or the strange looks as he talks incessantly about one particular area of interest. He only does this to engage that person. It is his way of socializing. Without peer education, the Kanye West's will capitalize on such a weaknesses. His moments of accomplishments may be stripped.
I can only hope that there will be a person who will allow my son to enjoy his moments of success, as Beyonce did last night. This will not happen without his peers understanding and reaching out to him. Beyonce understood what it felt like to receive a VMA for the first time. She wanted to give that "moment" to Taylor Swift. The typical teen may not even realize their own "moments". Will they know to support an autistic peer experience a moment? If fact, because most moments will have passed for the typical peer, the Kanye West's in the world may feel the need to publicly humiliate our children for their delay. We need a teen educational ambassador. Taylor Swift, now that you can empathize, we need you to take a stand and help us with our mission so that our children don't get their moments stolen from them too! Send me a tweet: http://www.twitter.com/pressdough .

Wednesday, September 2, 2009

A Parents Prayer-First Day of School

Dear Lord,
Today I lend my precious child out for the benefits of education, experience, and socialization. His anxiety is heightened along with mine. I ask you to watch over him and give him the confidence to embrace his new friends. I ask for your constant encouragement so he continues to exert his best efforts, especially during his most challenging moments. He has autism and those moments are so important to his progress. He needs that extra push and strength to endure, rise to the challenge, and overcome.

Please engulf him with our love so he will feel an ever present sense of security in knowing we are with him even when he can not see, hear, or touch us. Please grant him the self-esteem necessary to look past his own weaknesses (disabilities) and frustrations and realize what superb strength and worth he has.

Lastly, please give him special assistance during those endeavors he struggles with the most(you can input your child's own goals):
  • Peer socialization
  • Fine motor activities (writing, creative arts)
  • Integration with sensory processing to help limit distractions
  • Courage to lead and be his own person
Above all else, keep him protected in your arms. In your name, I pray - Amen.

Friday, August 28, 2009

Dining with Autism

September 28th is Family Day

An important part of my day is our family dinner. I will plan meals a day or more in advance (sometimes) for the sole purpose of a family meal. If you are a parent, I'm sure you have heard about the importance of dining together. I buy into the fact that sharing meals together creates family cohesiveness and opportunity for communication. I have no idea if our meals will prevent drug addiction or deliquent behavior during my children's teen years. I sincerely hope that I won't need to address these issues, but for now I'm content with my reasoning being completely personal and family oriented.

Having an autistic child with a very limited diet makes these dinners very challenging. My son is not on any specialty diets or anything like that. Our problem is that he only eats a handful of foods. My advance planning for each meal is primarily due to the fact that my two children allow little time for meal prep. I usually steal moments and stagger my efforts, throughout the day or days, so that it will all come together by dinner time each night.

Wondering what takes so long? No, I am not preparing a nine course, Italian or exotic feast. Usually it is just simple chicken dishes, casseroles and normal home cooking. Many parents with autistic children perform a juggling act to get, not 1 meal, but 2 on the table at the same time. The specific diet requirements can make meal preparation and timing very hectic. Add in the demands for bathroom assistance, sibling referreeing, boo boo's, messes that need cleaning, etc. It is amazing that most of the meal isn't burnt by the end. Meal prep is a high stress job in my household and worth the effort. I guess my reason is simple. My son can finally sit down to eat with us, with very little outbursts of emotion and necessary distraction. Meals weren't always this "easy".

As a baby and in a high chair, my son (who is autistic) would need quiet time to eat to get through his meal successfully. If there were any distractions, or people sitting at the table that were unusual, he would cry. Even conversation had to be kept to a minimum because it proved to be too overstimulating for him. As a toddler/preschooler, my son had a hard time sitting at the table at all. He couldn't sit still for more than a couple of minutes. I always fixed a plate for him, but more times than not, he would need to leave. Understanding his difficulties, we allowed his departure and hoped, with routine and time, he would begin to share in our family dining experience. Gradually, we introduced some favorite toys to bring to the table to provide him with self stimulating feedback. They kept him motivated to stay at the table longer, while satisfying his need for input. You may think such a distraction defeats the purpose of family dining, but when you are dealing with a child on the spectrum with autism, there are no rules. They need what they need and I provide my son with what I call "tools" to get through a typically normal event. In this case it is eating dinner at the table.

When I introduce anything to my son, I guess I have a very distinct method that has worked for him. I begin by establishing the routine, then the expectation with supports, and finally the action or behavior without supports (if possible). Let us fast forward to how our meals are now. My son expects family dinner daily. As I begin my meal preparation, he (relentlessly) begins his repetative questioning, "is it dinner time, mom?" He is a full participant in table setting and clean up. When I give him the go ahead, he runs through the house shouting, "DINNER TIME! DAD, DINNER TIME!"

Though he is allowed to be excused after his meal, my son confirms the importance of our family meals everyday as he runs through the house so unbelievably excited to eat with us. We have weaned the toys for input and enjoy amusing conversation as only a 3 and 6 year old can supply, as well as the necessary clinking of glasses for toasting.

Cheers to you too!

Monday, August 24, 2009

Closing the Circle for Teens & Autism

Reaching beyond the afflicted (and their families)....


I share a common need with many parents affected by autism. We want to help others and create awareness in the hope we could somehow make an impact. It is a passion I never knew I had (or was going to have).

In my own quest for raising awareness, I participate in yearly fundraising walks (Autism Speaks), "diversity day" at my son's school, social networking sites like twitter and facebook, and personal blogging. I view my efforts as somewhat cathartic with hope that I am touching others in even the slightest of ways. What gnaws at me is the fact that our pleas, experiences, or lectures are only heard by those who have a personal interest in autism already. Beyond the autistic community, is anyone really listening? Are we making the impact that we hope to?

With these questions in mind, I search for alternative (even creative methods) to reach beyond the families who are already all to aware. It is not that easy. Most activists or listening participants are those people who already have a personal experience with autism. Most of society is only aware of what they need to be aware of. If there is no need (i.e. no personal stake in understanding autism spectrum disorders), most won't hear our messages. So how do we get around this? We don't, but we can try.

Teens are my most recent target. I really feel like they can make the most difference with our children. Not monetarily, but in relatedness and their future. Money can buy research, but for me I'm searching for my son's success. I don't diminish the need to find prevention, but that won't help my son. I need to try to give him the best possible environment in finding his way through this maze. Establishing a way to connect with the teens of today, and their impressionable minds, can help him when he is finally ready for high school...and it may help my extended family of sons and daughters currently in those years.

My plan is to close the circle in creating a comprehensive awareness of autism in teens...
  • A little goes a long way: The first step I took was to write my personal story to the editor of my high school's newsletter. I thought it may be a way to reconnect with fellow classmates. I'll post the letter soon in a follow-up, but it made so much more of an impression than I ever would have imagined. The letter circulated among the staff and landed in the hands of a bright student in need of a project. She took on our cause and raised funds for the Doug Flutie organization (I am from Buffalo and this was appropriate). The walls of my high school were covered with autism awareness signs from personal donors. It may only be one high school, but the students are now aware. Imagine if every family afflicted wrote to their high school. I wonder what impact that would have.
  • Long shot, but you never know: Miley Cyrus is performing at the Today Show's summer concert series tomorrow. If you are able, stop by and wear your tees, bring your signs and try to grab her attention and/or generate nationwide teen awareness. I just saw her promote the campaign to go green. Why do you think she is the spokesperson? Tweens and teens will pay attention to her lead. We need celebs like Miley that relate to this targeted population and can actually make a difference.

How do we know we have come full circle in teens?

...a teen believes learning about, seeking out and engaging autistic teens is not only trendy but an enjoyable opportunity to make a new friend(s).

Tuesday, August 18, 2009

Autism's House

Arts for Healing - Music Therapy/New Canaan, CT

Do you have a "house" you go to where your anxieties drift away?

Most of us do, though we may no realize it. Our "house" may involve a physical activity like running or swimming, a hobby like music or reading, or busy work like cleaning or organizing. It is a place to re-group and get away for a sanity check. The importance of having a daily outlet allows us balance and tolerance.

What if you didn't have a "house" or even know what kind of "house" you needed to calm your nerves and ease frustrations? Many children on the autism spectrum suffer from such a dilemma. Their communication difficulties are a contributing factor toward some of this undiscovered area. Uncharted territory is the main culprit. If a child doesn't have an opportunity to experience their "house", how can he/she know they will be calmed or comforted? With great effort, I discovered that my son has two definite houses where his anxieties are calmed and his mind open to receiving new information and/or experiences: Music and Swimming (water/swimming- 6 mos old).

Music is his soother "house" and swimming is his comfort "house. It is important to understand the distinctions so we accommodate correctly during his time of need. Eventually, I am hopeful he will be able to independently determine his need and provide the suitable "house" to escape to.

Understanding the concept of "houses", and the necessity for an autistic child's discovery of what their own house(s) may be, is monumental to his/her progression. They provide (1)an escape for a child to take control back of their emotions and (2)is a place where they can feel most comfortable. It is during moments where our children are in one of their "houses" that we can capitalize on. My son benefits when we introduce new experiences or teach during musical moments. Though music is primarily his soother, my son's state of mind is open to new things and we take these opportunistic times to do so. Pairing music with communication(speech), academics, or socialization is a fantastic tool we use for maximum progression. Taking my son to one of his "houses" before new experiences allows him to work on his terms, not ours. It provides a sense of control and limits anxiety.

We all have our coping tools that we use for ourselves so this concept shouldn't be that foreign to any of us. The difference is that we have been given the opportunity to discover what we need because we are equipped with the typical communication tools to ask for our interests. This is where autistic children suffer and need the help of parents, grandparents, teachers, and typical peers to help them create their own "house(s)" of comfort.

What is your "house"?

My houses: quiet and creativity

Thursday, August 13, 2009

Teen Choice Awards & Autism Awareness


A few days ago I turned on (the TV t0) the Teen Choice Awards. Clueless as to who many of the stars were, I watched intently hoping to get caught up with the pulse of today's young (tween and teen) population. I am still a bit confused by the popularity of some of the presenters, but I couldn't deny them all my admiration for achieving so much, so young. They are a dedicated bunch.

As I watched the Jonas Brothers as presenters, Miley Cyrus as Miley Cyrus (ask a teen to explain), Zac Efron beat out by Rob Pattinson (no surprise there), Megan Fox as a female "hottie"(no idea who she is), and the show revolve around the cast of Twilight, I realized that these are the stars that need to promote awareness for autism. Their fan base are the people who need to be aware because they may have a peer in school with autism. Here's the thing, these young kids need to be "super" aware. They need to know how a person with autism feels or acts in terms of socializing and acceptance. What better way to get the attention of this population than to promote these messages through one of the Teen Choice idols. Any message delivered through a teen idol such as Nick Jonas (or any of the above mentioned) is sure to be received in full. Does anyone know the publicists of these ambitious stars?

I can't help but try. My son, and the autistic community he is a part of, is worth my effort. This is a tall order but if I don't try, I know that the awareness to this target audience will be lost for now. No matter what, I maintain such optimism for the "unreachable". I'm not sure why. I do know that if I don't ask, I won't know. And that is the question:

How do we (the autism community) snag one of these Teen Choice personalities to take on our cause?

We need connections and luck. For now, I twitter and cross my fingers....

Sunday, August 9, 2009

"Epic" Hugging and Autism

Mom, I want a hug...

...my son extends his arms as far as they can reach, wraps himself around my neck and squeezes with as much strength as he can muster up to fulfill his need. The song "Hooked on a feeling" plays in my head while my mind and body live in the moment.

I don't think I need to explain what was the best thing that happened to me today. There was a time when I wasn't sure if I would hear my son call me mommy, much less have him ask for a hug. How surreal it is to receive such a request.

Hugs or the act of hugging have great emotional and medical benefits. They release endorphins that can aid in pain relief and boosting your immune system (Article Alley). Additionally, a hug can reduce tension and help a person's confidence and self-esteem. While in the grips of a hug, a sense of security warms you, love can be reaffirmed, appreciation generated, and breathing restored. I would venture to say that hugging can be a form of meditation by getting a person to step away from the anxieties of the minute, day, or life. It is for these reasons that I put so much importance on teaching my son the steps to giving a great hug.

Have you ever been taught to give a great hug? Most of us learn the action by receiving and experiencing the feeling. This is not the case for my son who is autistic. A great hug is a reciprocal motion (it involves both, receiving and giving). Sure, the hug can be one one-sided, but the benefits are diminished. It is with this thought that I spent the past year teaching my 6 year old son the "art" of hugging.

Every night before bedtime, I kiss my son goodnight and ask for a hug. He understood when I held or hugged him during trigger moments to soothe. We even have a song I made up called(what else) "HUGS". This wasn't enough. I needed him to know the feeling of a hug for reasons that really go beyond reasoning. Usually, we just want or need a hug. It is a physical attachment but equally (if not more) emotionally driven. He needed to become a participant in our hugs and reciprocate. This is a tall expectation for a person who is uncomfortable with the contact and touch of such an engaging action. I forged forward because I felt it is necessary for his emotional health and happiness. I didn't want him missing out on that "hooked on a feeling" kind of grip.

I will admit that teaching my son to hug has its benefits. I get to look forward to at least one hug a day (I am a hug hoarder so I usually "practice" many more times when I can). I knew I needed to provide my son with the exact sequence of steps, repetition, and routine for him to discover and learn the "art" of hugging (great). I began with a break down of a hug:
1.) Desire/Emotional - " I need a hug"
2.) Body/Arms placement - I used the same words - "I need arms" (asking for arms extended and would physically extend them myself at the beginning to show him what he needed to do). This is also a universal and non-verbal signal to another person during a hug request.
3.) Arms wrapped - I physically wrapped his arms around my neck or shoulders until he began doing this movement naturally and independently.
4.) Motion - I use the same words - "Squeeze!" I squeeze tightly asking and showing him my expectation.
5.) Duration - This step is hardest for my son. I try to stay in the hug grasp for as long as I can before feeling him pull away. It is important for a hug to be substantial in order to give and get the maximum emotional benefit.
6.) Routine - I teach this at the same time each day (at bedtime). It has become part of the routine and has helped establish an expectation. My son is reciprocating my hugs and, judging by today's request, generalizing into other moments too.

Learning that hugging is not merely a rote-motion, but is an E-motion was my goal. I think I achieved it. Learning that you (readers) may need a hug was enlightening and motivated this entry. From a past posting titled "will work for", I read this comment:

Will work for "epic hugs". People don't hug enough. I want to be hugged like you mean it. to feel loved for that moment

Epic Hugs - I loved the description because when done right, all hugs can be epic.

Fun Facts on hugs:
Types of hugs: Bear Hug, Pound Hug (a man hug) - wikipedia
National Hugging Day - January 21st
Letter known for sending hugs - "O"

Sending...O O O O

Sunday, August 2, 2009

The "Happy Factor"

Is My Child Happy?

I've seen, heard and read it time and time again. For those of us with children on the spectrum, this question is such a concern because of the communication deficits that go along with ASD. Communicating with a non-verbal child or one with limited language skills is very different from that of their typical counterparts. As parents, we can not be certain of their thoughts and feelings. This leaves a question mark, wondering about the state and scale of happiness in that child (with autism).

The good news - With reading and hearing so many responses on this subject, it seems to me that society (or our own little society) knows what truly is important in life....Happiness. This is what we want for our children, no matter what the circumstances. Happiness equates to quality.
In my own journey through the sea of decision making for my son and his best interests, the most valued advice came from my mother. She told me to look at each turn, fork in the road, choice, and/or decision through the eyes of my son's happiness. Try to put aside my own needs and determine whether the therapy chosen, behavior sought, or information received would benefit my son's "happy quotient". If whatever I was mulling over would somehow make my son happier, then the benefits out weigh the negatives (which may be financial, hard work, scheduling, or even discomfort). In the end, my child can and is happy.

This is a bit easier said than done. We first have to find what works for our child. With all the inconsistencies in research and results, information gaps, and the onslaught of alternative options that feed our need to do whatever it takes in deciding what is best is mind boggling. Not to mention, the findings inconclusive. Next, try to find where you are in the Happy Factor by looking at the natural disposition of your child. This, too, can be difficult to assess when there are physical ailments and sensory overload weaseling their way in to confuse the matter. Our child's baseline is skewed and often results in temper tantrums, stimming, or retracting inward. It is important to remember that these actions are symptoms and are NOT part of our child's true nature.

So, I go back to the original question that aches at the hearts of many parents and wonder why I am so assured that my son is happy. I truly believe he is. My reliance on my instincts helps. I am a believer of "go with your gut". Getting in touch with my gut feeling (or instinct) during times of doubt has helped me have confidence in knowing that my son is happy. (1)I urge parents to trust your intuition in answering this, all too important, question. (2)Look at your child. My son exudes joy in most of his daily activities. That is what keeps me going. It is not without some hard work. We create an environment he feels most comfortable in (no matter where or what we are doing). His "happy quotient" filled.


We do have daily break downs, screeching, and plain frustration (for everyone). With each episode, an array of techniques that work for my son (singing, holding, rocking, escaping etc.) are used and handled with sensitivity. I know that each of our children are so different. What works for me may not work for another. I can only offer you (my readers) this:

Follow your innate, parental instincts to find your answer

If you feel you are uncertain, look to the areas of uncertainty and try to find solutions or adjustments that work for you child to fill up his/her "happy quotient".
Some areas to consider:
He/she is most happy when:
What satisfies him/her (make a list):
What triggers make him/her upset or unmanageable:
What methods ease his/her anxieties before, during and after triggers?
daily he/she enjoys:
Daily he/she needs:


It is more important to look at the parts rather than the whole. It is human nature to focus on the out of the ordinary (sometimes negative) parts. Be fair in your determination and make sure you see what is undeniably good and happy (positive) during daily moments in your child's life.
I read this week (I think it was a Pampers newsletter), it has been discovered(research, I guess) that very sensitive children, who have a tendency to cry over the slightest thing, also laugh the most. I think that means more happiness for us folks! Let us try to block those overly sensitive moments and focus on the laughter. You may find out your child is one of the happiest.

Need an equation?

Love+Respect+Care+Laughter+Understanding+Work+Technique+Patience+Advocacy=Happy Quotient

What makes you happy?
My happy list begins with: children, hugs, kisses, chocolate, ice cream, sunny days, twirls, tickling, bubbles, clean house, family fun, my daughter's eyes, my son's dimple, singing nursery songs, hair styled (only to name a few that has come to mind first)

Back to filling up my children's happy quotient...

Saturday, July 25, 2009

Autism - Family Excerpt (Socialization)

"You don't give him enough credit"
Declared my mom, speaking about my protectiveness during this last family vacation and the rantings I had about summer school inadequacies. I'll admit to my increased awareness and facilitation during social opportunities, though it is NOT due to my lack of faith in my son. The vacation allowed for much observation and has strengthened my reserve.

I am certain that many of my friends think the same as my mother and my mom is the only one that feels comfortable enough to say it. It is hard to explain (to the "outside" world) how much social interaction is a learned tool. Most of us inherently understand and quickly adjust. We recognize non-verbal ques, understand slang language, and have developed the skill to put ourselves in someone elses shoes (at least theoretically). We comprehend what someone may be thinking or feeling. These things are not quite so easy for my son. I need to teach him the intricacies of communication, reactions, and defense tactics, and I need to teach in very specific ways. Below is an excerpt of my niece's birthday party while away on my family vacation:

As the party was in full swing, the kids ran to the swing set to play on the monkey bars. My son (proud to be part of the group)was swinging on the swings but this prevented the others from using the monkey bars:
Young family member to my son: "Stop swinging! Hey c'mon, STOP SWINGING (inflection louder), we want to use the monkey bars!"
Young party friends begin addressing my son: (they get on the band wagon and begin to yell my son's name) and "STOP SWINGING!"
Son: (in his thoughts) Oh, they are yelling my name. This is fun. I'll keep swinging. I like it when they cheer me on. He smiles (a bit devilish I admit) enjoying the attention.
Young family member: GET OFF NOW!

We interjected upon seeing the growing conflict and had our son get off the swing. This move was not without its issues. In tears, he stopped swinging, then ran to us because he couldn't understand what he did or why we came to get him. I never like to create any public displays that might end up making my son out to look different, especially to his peer group. I worry that it may be embarrassing to him and try hard not to take any chances that his self-esteem be compromised.

I was disturbed to see how little tolerance the other kids had. The time frame between the request and expectation of action from the request was almost immediate. It was an eye-opener for me. Kids are very straight forward and can be callus. (Typical) kids will be (typical) kids. They are still learning the virtues of patience, so the burden is on me to find and give my son what he needs to survive in such an environment: A.C.T - Acknowledge, Communicate, Talk.

Acknowldge with a rote, verbal or non verbal response - Processing takes longer for my son. He understands requests or replies, but it takes him a bit longer to actually process the information. In a society that reacts and expects immediate gratification, this is detrimental in my son's ability to keep the peace. Peer frustration occurs. Solution: Teach my son a nod, wave, or immediate response that will work for most (if not all) circumstances and allow him the time to actually process the information, yet provide acknowledgement.

Communicate back: "You want to go on the monkey bars?"

Technique/Talk - Use words as a defense tactic, like HOLD ON! WAIT! and some slang that other kids may use in almost mocking fashion, like "Let's see you do it!, I'll stop when you come close". I plan on observing the more common defense expressions used by children, then putting together a song and social stories as teaching tools. It would be impossible to cover every situation he may get in, but it may be generic enough to use in multiple situations.

Most of our spectrum children are taught early on to take the lead from their peers. That is one of the benefits of inclusion. My son has successfully mastered the art of laughing when others laugh and to go along with the crowd to blend in and become part of the group. Though I don't believe this is all together wrong, there is a danger. My son may not decipher between when there is a true joke to join in the laughter or if the laughter of his peer group may be one of mocking. I am concerned that he may actually laugh in spite of himself. So, once again, there is a double meaning in something most parents don't have to give a second thought to.

For now, off I go to discover ways to teach my son the expression of laughter versus the expression of something more sinister, like mocking....

Thursday, July 23, 2009

Autism vs. "Twilight's" Edward/Rob Pattinson


Okay, I know what you all are thinking: Comparing autism to the new crazed "Twilight" book (and/or movie) series is quite a stretch. I admit to succumbing to this new obsession. With that said, I was humored by my 6 year old (autistic) son's seemingly innocent vanity and the need to run his fingers through his hair (which he believes is long and due for a haircut). With all the press on Rob Pattinson, I couldn't help but think of the new heartthrob, and this same signature move of his, that has taken over girls hearts everywhere. I had to chuckle.

If you have been following the publicity, there is a competition between the two male love interests in the book(Team Edward/vampire vs. Team Jacob/werewolf). Many readers (or audience members) will side with one or the other depending on their own personalities, needs, or desires. As I watch my son flicking his hair to the side, I asked myself who would win a competition between Team Rob (Pattinson) vs. Team Ryebread (a nickname and the team we name ourselves during our annual walk for autism). Of course, you all know my answer... No Competition -Team Ryebread wins by a landslide! Why, you ask? Aside from the fact that he is my son and I see only him when I imagine the cutest boy in the universe, he has traits that I really do believe would endear himself to the world. I'm not an expert on the superstar, so I don't know Mr. Pattinson or his character, but I can speak for my son. Team Ryebread's heart is pure, his nature-gentle, his character strong, willing and sensitive. He has a charisma about him and if he loves you, a trust is gained that will make you feel special. Beside all these things, he is handsome (I know this, but many people tell me too) with an adorable sense of humor. Sorry Rob, even with your gorgeous hair, my vote is for team Ryebread!

I go further with this somewhat ridiculous "Twilight" series comparison and begin seeing some consistencies between (if you can imagine) autism and the "Twilight" vampire family (the Cullen's). Hear me out:
Autism
Unique/Not typical
Introvert (or viewed as)
Often ostracized
Deliberate in actions
Consistent/ Routine
Dietary constraints/"vegetarians"
Beautiful in nature
Good hearted (can't not be) Good people
Heroic (click link, it is great)
Is a family affair (Does not just affect the individual)
The Cullen's ("Twilight's" Vampire Family)
Unique/Not Typical
Introverted (or viewed as)
Ostracized from peers
Deliberate and restrained
Routine in nature to avoid detection and self preservation(especially Edward)
Dietary constraints/"vegetarians"
Beautiful
Good people
Heroic (to the people that love them)
A family affair (if you get involved, you are affected)
This may describe my affinity for the storyline. My heart skips a beat every time I think or see my son (similar to Bella) and I have an empathy for such uniqueness and struggle. I decided to write about this in hopes that young people may come across this blog in the search engines while looking for more info about their favorite "Twilight" superstar or storyline.
My message is this: Next time you come across a person with unique traits or something that just seems a little off, refer back to the Cullen's and how you (as well as Bella) were somehow able to get passed any judgements to find their true value. Reach out to that person with sincerity.

Wednesday, July 15, 2009

Autism - Vacation (part 1)

What can I say about vacationing? It always seems like I need a vacation from the vacation. My family did manage to skate past all the drama that went along with visiting Grammy, uncles, aunts, and cousins. I am actually pretty happy about that! What may sound like a simple thing to do, is not so simple when you combine the personalities, schedules and priorities of 17 people. Let me break it down for you:


My family
  1. We need a daily plan. Every morning, my son will demand to know what we are doing all day long. He will drill you for what will happen next until you finish with bedtime. So, that is a priority..a schedule of events. The problem: there really were no events scheduled, so this was left up to me. Other problem: the weather was not cooperating. A bit of a nightmare for us when our kids spend a majority of their time in outdoor activities (playground, little pool, riding bikes etc.) I did have projects up my sleeve, but was hoping that on vacation we could break away from the norm.
  2. We have some dietary constraints because my son is a very picky eater (as many children on the spectrum are). We generally never leave home w/o a "bag" filled with a bagel or juice or cheezits, pretzels etc. This alleviates the stress of going out to a restaurant that does not have something on the menu my son would eat. Though I bring the bag "backup", I never like to leave my son out of anything. If we order Dunkin Donuts, I order a bagel for him (whether he eats it or not). If we go out to lunch, I try to order chick nuggets or grilled cheese for him (will never eat the nuggets and the grilled cheese has to look just right). It is all about including him with us and never making him feel separated. Trust me, it is worth the $3 or more to make him feel part of the group.
Siblings w/babies
  1. Needed to be at a place of rest for the morning and/or afternoon naps. That pretty much takes care of the whole day or may only leave an hour for a quick trip. Needless to say, many times the whole family didn't spend time all together. It's not the fault of anyone, just the stage a family is in. It is hard when there are babies.
  2. Bottles, diapers, and cargo during any outing. Lord have mercy, thank goodness I am past that stage! I am very happy with my lunch bag backup.
Sibling w/older children
  1. How much do you think the older children wanted to go feed the ducks? Yay for the jumping pillow, though there still was the endurance of my son's relentless need to go to the mall and visit the carousel. And YES, we had no choice. When it is on my son's list, it is what we need to do for him to make his day complete. .. so sorry to my family.
  2. More independence- That's a wonderful thing for a parent (sibling). Unfortunately, the other parents(us) need to oversee much of the play in order to provide adequate engagement opportunities and police the socialization between peers. Many times, we found ourselves watching all the children while the rest of the family enjoyed their own time together. Not exactly relaxing.

Mother w/ food prep schedule

  1. The days centered around food prep, meals, and eating. This type of obsession "bit" into the daily events and enjoyment of family time. We eat when we are hungry. Yes, usually it happens around the same times each day, but is taken care of at the time the hunger pains occur. Prep is not needed....throw hot dogs on the grill, chips and (tah-dah)...a meal for all. 5-10 minutes.
  2. Again the food schedule. Immediately after breakfast we were all being asked about lunch and dinner....too much time on this!
  3. Did I mention about meal times? Ugh!...so annoying-especially when one of my kids will only eat a handful of items that requires so little time. Such an unnecessary stress to the week.

So this was the set up for our family (reunion)vacation. All and all, many things learned (part 3), so there is a definite positive side to all the confusion. Fun had by all...not quites so sure about that. The kids did enjoy being with their Grammy, aunts, uncles, and cousins. That in itself was the reason for the trip.

I regret to tell you all that this is only part 1 of my vacation series. Stay tuned for part 2 - Vacation (Socialization deficits) and Part 3 Vacation (learned & on list)

**Make sure you check out the jumping pillow link. It was really great for the kids. My son loved it. The pillow was possibly the one thing that kept our sanity. It was outside and provided such great feedback that really helped keep my son centered throughout the day.


Wednesday, July 1, 2009

Autism-Will Work For...

Out of the blue, I had this strange picture in my head. I was standing at the corner of a traffic light with a sign that said:



WILL WORK FOR THERAPY
It got me thinking about what is important to me and what lengths I take to protect that which is so priceless. In the past, I admit I have offered to "pimp" myself out at my son's school or therapy sessions. It is the one way that I can convey the necessity of investing in my son. I will do what I can to help teachers, paraprofessionals, or therapists. If mailings need to be sent, letters typed, copies or phone calls made, laminating etc., I will gladly provide these services to keep the focus, and an extended effort, on my son.
The sign initially was comical to me. Any parent with a child on the spectrum understands the financial drain it can take for additional therapy, alternative therapy, behaviorists, nutritionists, etc. Until recently (I live in CT), many insurances have ignored our pleas for plan inclusion. It left much of the financial burden on us as parents. It still does. The very fact that "therapy" came to my mind first is significant.
On the other hand, many of you might say that you would just pay for the therapy. Yes, of course, I would do that too. That really isn't the point. It has to do with motivations that money can't buy or the supply is inadequate. What does each individual hold so dear, that they are willing to be humbled enough to stand out on the road with a sign asking for that very item? The answer is limitless and very personal.
So, I pose the question to you (& would love to read them in my comments)
Will Work For (fill in the blank)....
Other possibilities:
Will Work For Love
Will Work For Peace
Will Work For Medicine (for my child)
Will Work For Trust
Personal Note: My son wrote the words on the sign. Given all of his fine motor difficulties, it is the most beautiful script I have ever seen. That my friends is what we all share....an immense appreciation for the most fundamental of tasks.

Monday, June 29, 2009

Autism - A Small Victory

Well, we are 1 week out of school and I have already begun preparation for transitioning my son to summer school. It will begin in July, will not be held at his regular elementary school, and his special ed instructor and therapists are unfamiliar to him. To be honest, I have been preparing for summer since March. We have a six month lead time on most of what we request to ensure things run smoothly for my son. Issues can conveniently slip through the cracks if we are not on top of things daily. Appropriate lead and time management ensures accountability. I am confident that with the social story created, summer school pictures requested, and daily visits to the school playground, it will be enough to familiarize my son to his new surroundings and minimize his anxiety...or so I hope and pray.

Onto the requests we have made for fall. Again, we have been dealing with these requests since April 1 (PPT meeting). We have had limited success in getting any progress and my frustration was nearing monumental proportions. This is something I never want because my emotional side takes over and I feel like my credibility is lessened and brushed off as "just another emotional parent". I really hate it when I let the love and passion I have let loose because tears begin flying and I can't seem to stop....credibility lost. This is where I have been for months with the school.

The administration was sticking their heals in for 2 requests of ours: retain paraprofessional and teacher for consistency and educational progress. Note: we decided to retain our son in Kindergarten for another year to allow his social skills to develop and close the gap between his peers. We were told in no uncertain terms that our requests would not be honored because of school policy. In light of these "policies", I began requesting some major preparation and transition plans for my son: (1)new para train with the current person to understand my son's motivations and personality (2) this individual had to have special education training (3)I would have to meet with him/her and (4) a timeline prepared of how the school intended to handle the transition. All of this never happened. Frustration was mounting when I received a call from the school (on my son's last day) indicating that our requests will be granted for the coming year. Better late than never. Amazing!

It is one more victory for us and proof that if you advocate for your child, the school cannot ignore your pleas....even the emotional ones. I'm not sure why the change of heart. I have a feeling it was due to lack of planning and some thorns in their sides (us), but it really doesn't matter. What matters is that my baby is going to get what he needs and that is priceless to me. All will be forgiven if the school does right by my son. Thrilled doesn't even come close to what I am feeling.

For more information on advocating for you child, visit your local parent advocacy center. In Connecticut, the site is http://www.cpacinc.org/

Sunday, June 21, 2009

Autism - Sunflower

Dedicated to Miss Kathleen (xoxo)
The school year is at an end. I usually don't have trouble overextending myself in gratitude to the team of school personnel that have worked with my son. This year is a little different. My heart isn't in the same place as previous years and I struggle to find the right words (or any words for that matter) to express appreciation for their guidance. There hasn't been all that much. The team involvement was not what I had hoped for at the beginning of the year (see post from September's http://www.pressdough.blogspot.com) . I must emphasize that my distant feelings are not meant for all of my son's assistance (his paraprofessional and physical therapists are fabulous).

To the individuals who have dedicated themselves to my son and to me are, I have to thank you from the depths of my heart and soul. I leave you with a poem (or whatever you would like to call it as I am no poet) I wrote about our angel on top:
Radiant Sunflower
Seedling
Roots tangled
Dirt unsettled
Struggles to break the barrier
Breaks through with unnoticeable difference
Additional water, sun, nurturing and love required
Inconvenient with an unfamiliar amazement
Greenery begin to show
Setbacks endured
Watch with anticipation
Watch with hope
Blossoming with its uniqueness
Bursting with beauty
Earning each petal, one by one
The core so strong
A sunflower emerges despite itself
Character created
Never defeated
Radiant

Special education teachers, paraprofessionals, physical therapists, speech pathologists, occupational and social skill therapists, adapted physical education instructors and mainstream teachers working with inclusion:
Please keep your dedication to our children, try not to be afraid of becoming emotionally invested, stay true to what you know is right for the child and know how much you mean to us (the families). Thank You!

Saturday, June 13, 2009

Autism - The "BIG" Walk


In my need for creating memorable traditions, every year since my son was diagnosed, we raise money and go on (what my son calls) the "BIG" walk. It is a day of celebrating and support of our children who are on the spectrum for autism. There are many organizations for autism that have walk events throughout the year. For us, we participate in the Autism Speaks, Walk for Autism held at the Manhattanville college campus at the beginning of June.

The day is even more important because it usually is scheduled during the same week as my son's birthday. This year was no different. We all woke up bright and early and began with joyful, excited, and repetitive announcements from my son: "Today's the BIG walk, Mom?", "When are we going to the BIG walk, Mom?", "We will bring the wagon, Mom?" We all wear, the coveted, red t-shirts to show our comradery. Red also happens to be my son's favorite color. The weather was perfect as we wait for our family of team members to arrive at our house.

After packing up the cars, all the members of team RYEBREAD (a nickname we gave to our son at birth...he was as tiny as a Ryebread) loaded in. Upon arrival, my son took controls of the wagon handle and began pulling it up the hill to where all the walkers were congregating. It is quite an event. There was face painting for kids, tattos, bouncers, refreshment stands and an information tent where families can seek out resources. That tent in itself is probably lifesaving to many.

The horn blew and we were off walking in appreciation of all our family, friends, and acquaintences that so generously gave to our fund. It always is a bit emotional for me. I see such sparkle in my son's eyes and hope that everyone can see what I see. This is a child so eager to please, so gentle in mannerism, so impressionable yet makes the most impression on us all, fun loving with a sense of humor, truly a harmonious person... Do or can others see what I see?

Last thought - As we walked, we thought to bring my son's new bubble blower. It was one of the best things we did that day. Bubbles make children laugh and parents happy for the distraction. Has a bubble ever popped on your cheek? It can bring out the silliness in anyone.

It was a fun morning and another year with tradition...or some could say routine:)

Monday, April 6, 2009

Autism - The Trees Through The Forest

After this weekends adventures, it is amazing to me but I feel a sense of joy Here's the story:

This weekend consisted of a sick 3 year old with (what we simplified as) "fast poopies"(FP) and a fever, a child who (enjoys turning things) turned a dial called "thermostat" on our spare fridge to the zero position which thawed the entire contents-giving us no options but to throw out the food inside, a Sunday mass cut short due to the FP problem, an Easter egg hunt, Easter egg decorating, a birthday party for a classmate, extended family dinner, and a trip to the emergency room for a googly eye inserted (stuck) in my 3 year old daughters nose, occurring during family dinner and the birthday party where my husband and son were at. Forgive me for the run on sentence but I wasn't sure if or when the craziness would end. This could be enough to throw any sane person into a spiral of insanity. The thing is, I felt and still feel quite sane, even harmonious.

I suppose the couple glasses of wine I had during the festivities on Sunday may have kept my wits about me but I know that wasn't it. I was on a natural high that lowered the stress and aggravation I would normally feel. I get a natural high every time my son makes a step closer to relating to his peers and is able to feel the joy that a typical 5 year old has. It happened at the Easter egg hunt.

Last year, we attended our first Easter egg hunt. It was a cold, damp day to begin a tradition of childhood fun. Aside from the off weather, we quickly realized that our kids would not go near the costumed bunny or chick and didn't have a handle on what their task/job is. Another words, when the horn blows, they should run out into the field and pick up any piece of candy or plastic egg and drop them into their baskets. We didn't realize that this was something we needed to teach to our son. When the time came, the horn blew and we ran out with our children picking up some of the goodies and trying to explain (in a very fast manner as the other children were like vultures) what to do. Talk about frustration. Though we had a good time, it was a bit sad because both of our kids didn't really "get it" and they didn't get the same experience that the other children did.

This year was different. We arrived early so we could pick our spot around the field and transition our kids by explaining what they needed to do. We lined up behind the cones and waited for the horn to blow. I could see the anticipation in my son rising. He was excited and knew what he needed to do. Finally, the horn blew and we ran out into the field. Our little 3 year old needed a some help, but she was doing pretty good on her own. Meanwhile, my son was targeting items and snatching them up like a pro, giggling with elation. We stayed out of the crowded areas so that he wouldn't get overwhelmed. It was a great strategic move as well. He filled his basket to the rim with goodies while his peers were fending off each other as they dove for the same items.

It was such a great moment. I love that my son was able to feel like everyone else. He knew he was involved. After, I saw him strut with such pride and confidence. He was on top of the world. The real beauty is that he gets so much more from such an experience than any of his typical peers or even his sister. His motivation is purely for fun. He knows that each candy he picks up, he neither wants to nor will eat. Yet, he is the happiest child I saw walk off that field of candy. My son isn't caught up in the greed and need of getting all the sugar possible. He just wants to enjoy the moment, the task, the atmosphere, and the holiday. He takes it all in and is in heaven. While the other children do have fun, many (including my daughter) are looking at "what's in it for me". My son savors the experience.

Upon arriving home, he divvies up all his goods. He lines them up, counts them, discusses them and then starts handing them out. He comes to me and says "Mom-which one do you like?", in his broken and a bit repetitive speech. He is thrilled to be giving me part of his treasure that he worked so hard for.

So after all that went on this weekend, all I can really focus on is the joys of normalcy that my son felt. It was an ethereal event that surpasses spoiled food or even a googly eye in the nose (though I will admit, I was so relieved once it was extracted).

Saturday, April 4, 2009

Autism and Realities

Realities~

I commend all those trying to spread the word about autism (autism spectrum disorder/ASD) by using their talents, influence, and resources.

As I was watching a program on CNN last night about the debate over causation, Hollywood personalities (with children afflicted) gave their very passionate rendition of why so many children are diagnosed and the cause of the increasing numbers. It was also suggested that there is a cure. This is very disturbing on many levels.

As a parent, I would love to believe that there is a cure in taking specific actions to change immunization timing, diet, or other methods. The fact is that this is a spectrum disorder. What works for one, does not work for all. Especially those loves who are diagnosed as having a more profound version of ASD. This type of awareness disturbs me because parents, feeling so lost in this circle, may go down a road of false hope. I am not suggesting that I don't believe in hope. Quite the contrary, I believe in such enormous potential (hope) in our children, I just don't think they will be cured.

No cure~
In order to help my child, I have to admit realities. My baby will not be cured. I come from a point of "I can's"and how I can help.
To begin, I start the list with: I can....
  • I can give him the tools to work through his deficits.
  • I can love him and teach him to love.
  • I can create a safe, routine, and nurturing environment to promote learning and his/her potential.
  • I can look for new ways to teach through pictures, experience and others.
  • I can diminish anxiety through sensory awareness, sensory diets, and instinct.
  • I can treat him/her as a valuable member of our family.
  • I can learn from my son's hard work, tenacity, exuberance, and integrity. He is a hero.
  • I can...

Actions~

From my previous post the diversity day held at my sons school was great. Stations were set up with simulations from friends who have a disability. Suggest this to your school or PTA. Stations and/or simulations consisted of: fine motor activities (buttoning or snapping a coat with oven mitts on, writing with your least dominant hand, grasping small items with tweezers), Gross motor activities (trying to make a basket while in a wheel chair), simple activities (walking blindfolded) and much more.

Be passionate without intense emotion. I noticed how intense the guests were on that CNN program last night. It came to my attention that I may look as intense while dealing with PPT's or other meetings for my son. It is hard to deny such feelings but I am beginning to realize that I am sending out the wrong message. I may not be achieving what I set out to because I look like I am just a crazy parent. I want everyone to understand the importance of my requests or actions through the passion I possess. Unfortunately, my passion may be the very thing that is discrediting me and my purpose.

Sign up to support or raise money for Autism. We participate in the Walk Now for Autism in Westchester, NY, raising funds for Autism Speaks.

Programming~

April 6th: Discovery Health Channel - begins at 8 p.m EST - Unlocking Autism - http://www.youtube.com/watch?v=hwZyHpDHLGk

Tuesday, March 31, 2009

Autism Awareness

Happy Autism Awareness Month!

April is the month of new beginnings. Flowers begin to bud, a resurrection is celebrated, rainy days begin the harvest, daylight grows longer, and a renewed sense of energy seems to flow through. It is only fitting that this same month dedicates itself to raising awareness for autism, compassion and hope for new beginnings to every family afflicted or those who may become.

Personally, this is a month of responsibilty. A responsibility that involves doing whatever it takes to educate, assist, and involve my family, friends, and community in understanding autism. I am excited to begin by participating in diversity day, appropriately held on April 2nd (World Autism Awareness Day), at my son's elementary school. Stations will be set up to simulate the difficulties a peer with a disability may encounter (during daily tasks that are typically easy for most of us). I will be demonstrating at the fine motor station where the children will actually be given the opportunity to experience the frustrations and difficulties of a disabled peer. It is a reminder to us all that awareness can begin at the any age. The benefits these youngsters receive in understanding their friends produces an empathy that will encourage friendships to be made, to strengthen or to grow. The time to make an impression is when minds are impressionable.

Check back often, I hope to post (often) with personal experiences and triumphs, awareness suggestions, and facts.

Tuesday, March 3, 2009

Autism: Team Meetings

Well, it took me a little while to figure out how to "work" team meetings. I have never felt that adversity is the route to take in motivating others to take action. Since September, I entered each team meeting with encouragement, optimism, and the intention to help the team of therpists and teachers working with my son. Initially, I was met with an energy and openess from each that I felt would positively impact my child's progress.
Over the past 6 months, we have had concerns. At first, it seemed that we were heard. Then I began to realize the inadequacies and my gut feeling telling me that, despite what everyone was saying at the team meetings, my son was not receiving the most out of all his time at school. We hired an educational consultant/advocate to observe him in school. I was hoping that I was just an overbearing parent and that these people...this team of professionals, would do what is best for him. They would just inherently do this...if only because he is a child, right? How could anyone turn a blind eye on a child? Apparently, the politics (between administration and teachers/therapists) at school takes presedence over meeting a child's true potential. No one wants to speak up for fear of ruffling the administrative feathers.
I was correct about the problem in my son's program and meet with the team tomorrow (along with our educational consultant). It is disappointing because we, as parents, have communicated our concerns repeatedly on this very issue(negative peer model), only to have the school tell us they see no problem. We wanted to work as a team to accomplish what we need to....which is to allow my son to reach his potential. The lessons I've learned:
1.) If you want change to happen (in your child's program), you need to hire outside help. The school district wants parents to "trust" them in their cookie cutter approach to handling special needs children. They will work with you, but truly won't listen unless you make waves. The squeaky wheel gets the grease.
2.) You will never get more if you don't ask. You must do your due diligence and research, research, research. I would begin at the local advocacy organization and network with other parents to find out what they have. If you don't know what to ask for, you will never be able to get it.
3.) You must give appropriate time to the teacher and any new therapists, but determine how much time is appropriate. I think I waited a tad too long. I think the first 2-3 months of the school year, should be enough time for transition and the beginnings of progression and child/teacher or therapist connection. If your child isn't connecting with his/her therapists, you need to ask why. Therapy may be hampered with a void in that relationship.

I'll let you know how it goes.

Saturday, February 7, 2009

Autism and Balance

Can there be balance with autism in our lives?

If our expectations strive for the kind of balance typical families receive, we may be setting ourselves up for frustration. Typical or not, many people struggle to get "balance" in their lives. It could be work/life balance, social balance, or financial freedom. I find myself looking to the typical society and realizing that my definition is different. Many of the decisions my husband and I make are viewed as "choices" by outsiders. In my eyes, I have had no choice. I have obligations:
  • I have an obligation to seek out treatment for my son's apraxia at $300/hr fee. (www.talktools.net)
  • I have an obligation to seek out a nutritionist (in Texas)and special pharmacist to help with my son's compromised immune system and nutritional deficits due to sensory distractions at $150/hr. ..not including the costs of the lab workup(www.asdpuzzle.com).
  • I have an obligation to seek out the best doctor in the vincinity (NYC) to diagnose, track, and provide treatment options for my son's PDD at $2400 for a 2-3 hour assessment (www.mccartoncenter.com)
  • I have an obligation to seek out an educational consultant at $120/hr to observe my son's therapies and educational program in order to make sure he is getting his needs met and progressing to his full potential(www.vankirk.org).
  • I have an obligation to seek out a behaviorist (fee unknown, but know it is going to be a doozy) to provide assistance and techniques to handle life with an autistic child.
  • I have an obligation to purchase any possible tool (weighted blankets, oral, fine, and gross motor tools, toys etc.) to assist in my son's success.
  • I have an obligation to track and constently keep watch over every aspect of his life through team meetings at school, daily oral motor exercises, e-mails, phone calls, appointments and more.
  • I have an obligation to facilitate socialization through playdates, activities, social thinking, and, above all else, encouragement.
  • I have an obligation (even with extreme financial burden) to stay within the school district(I know is better than many) so that my son will reach his achievements.
  • I have an obligation to keep our lives as routine as possible because my son functions best when he knows what to expect.

I struggle to find balance just like everyone else. It is not the same as the typical society. It is balance with autism in my life. I do not have choices, I have obligations. My expectation is to seek "balance" with those obligations. I accept my own obligations and now aim to make it possible (somehow) with all of my creative endeavors, my ideas, and drive to make it happen.

Sunday, January 18, 2009

Autism: Kindergarten Playdate

Friday was a professional development day at school which means, no school. Without exception from any other day, my son asked "what are we going to do today, mom?" It seems like it would be a reasonable question, but when my son inquires, it basically means: Give me a play by play of everything we will do. Many times, my day has not been completely scheduled and I must think quickly about the tasks, errands, or play that we can do. There will be no room for spontaneity as my son will create a checklist to mark off (throughout the day) as soon as I answer his question.

I try to keep the kids busy so on the checklist, we had to go to take my daughter to a class at the Y, go to BJ's, and promised each could invite a friend over. Having only done this once before with my son's pre-school classmates, I felt he might be ready to give it another try and called a very nice boy from Ry's class whom I have seen take to him. Upon opening up the door, Ryan ran into the other room. I greeted his friend and promptly began to facilitate play in hopes of making both boys comfortable and bringing Ryan into the play. "Let's play on the smart cycle. You can both race against eachother", I suggested. Though the game was a big hit with the friend, my son hung out in the background (sometimes even up the stairs) trying to get his bearings. I understood, but I wondered if the little boy who was over understood.

It was a long playdate. I made cookie cutouts of each letter from everyone's name (girls included). My son loves to spell his name and I thought his friend may have the same affinity. This was a strategic move as I knew this would take up time as an activity, everyone would have a snack, it would be fun for all, AND Ryan could participate on his own terms (though he would never eat the cookie), in his own space. I hoped the friend would also feel better because, up until now, he had two little 3 year old girls trying to grab his attention....something, I'm sure, he didn't expect when accepting the invite. Poor guy.

In hindsight, I'm glad Ryan had his playdate. Though you would think he may not have liked the discomfort, I can guarantee that Ryan will talk to his class about having his friend over on Tuesday. I think the friend is a keeper and I will do it again, and again, and again. Even at such young ages, a core character is already developed. Each one of these boys could certainly teach the other.

For me: I will not lie, it was exhausting. But: I am so happy that Ryan will have this event to "play up" for school and feel great about, maybe even typically social. Well worth it.

Tuesday, January 13, 2009

Autism and the Tooth Fairy

Last week, my son lost his first tooth. This is a pretty momentous occasion as it symbolizes that your "baby" is even growing older. After the new year, I had a feeling that Ry would begin this stage of the tooth fairy and began preparing him for a dental appointment. With all of Ryan's oral motor sensitivities, we weigh each battle and decided to hold off on oral hygiene ( just the dentist) because we had "bigger fish to fry". He finally opened his mouth wide enough that I thought a visit to the dentist might be do-able, so I began telling him about it.

Well, I guess my feeling was right because he lost his first tooth last week during school. Losing a tooth is a somewhat abstract concept. With most things, Ryan learns concepts by experiencing them. He doesn't understand most things by just talking about what will happen. This was true of losing a tooth and the tooth fairy.

In losing the tooth during snack, his paraprofessional realized his tooth was missing, found the tooth and proceeded to show my son. Ryan was not impressed and excalimed, "Don't put it back in"! This is how he thinks. His understanding goes as far as his experience will let him. Today, there is a space in his mouth and there is nothing we can do to explain to him that a grown up tooth will grow there. We have to wait until it happens. We were just relieved that he didn't freak out about losing the truth. On the contrary, he lost it and didn't even let anyone know. I brushed his teeth in the morning and didn't even realize it was loose .

Fast forward to the evening when the tooth fairy is coming. Again, Ryan does not enjoy the mystique of such an event. He asks me to sleep with him. I didn't see that coming. In trying to minimize his anxiety, I offered to call the tooth fairy and tell her that we will send the tooth through the mail. She could send the "payment" after she receives the tooth. In some respects, he understands normality and didn't want me to do anything different. Still, he didn't know what to expect and that can make him crazy.

I was pleasantly surprised that everyone slept through and woke to find that the tooth fairy did slip in, take his tooth, and leave money for his bank. His next tooth will be less stressful for him because now he understands through his experience.