"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!

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.

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 .

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.

Dining with Autism

September 28th is Family Day

CASA promotes dining together

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!

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).

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