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

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.

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.

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.

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.

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.