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:)

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).

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