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....

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.

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.

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.

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/

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!

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:)