Consumerism Overwhelms me and my ASD kids

Here's an interesting thought I had today....

In my effort to provide a clear and therapeutic resting place for my family, I've discovered that my poor man's brain has been having an active fight with my need to purchase more and more things which has a detrimental affect on my kids. My kids are actively making me break the habits that are intuitively instilled in me based on what I perceive as this great way of life, which, I've discovered, is a fantasy at best, and at worst, a lie conjured up to keep me distracted from my own pursuit of happiness.

~Now I know that was a lot, 😉so let me see if I can unpack this light bulb moment for you. ~

My poor man's brain was built on the premise that "consumption gives you clout". What I mean by that is, the more you have, the more you think you have made it! or become somebody! I've always been a huge consumer. I don't know why, but I've always loved gadgets and things and the sheer joy of finding things on sale and that rush of buying it has always given me pleasure. Once I started having children, I passed that joy from buying things for me to buying this for them! I would love to find outfits and toys that I could just buy and buy for them to signify that

1. I worked hard enough to afford to buy you this stuff 
2. I love you so much, I will buy you this stuff

Two things that I now know to be very flawed in my thinking and at this point, I'm just now reconciling with my notions about this because of ..... my kids!

I've noticed that the more I have structure and a clear space for the kids, the more they are content, happy and able to focus on what is in front of them. Minimizing distractions has worked tremendously when it's come to school work and even potty training. If I throw the latest, loud, light-blinking gadget at them - they just shut off and shut down. Nothing of substance gets done, and most of the time, I end up desensitizing them to the new thing I just bought rather than the skill I'm trying to teach them.

Now how did this affect me? Well, now I've discovered this new guilty pleasure of mine. Looking at Tiny House youtube videos and dreaming that one day I too could live off the grid, simply and efficiently; Living on the road and not a slave to the daily grind. All the lies they told me about getting a job and being fulfilled by spending my money on stuff is just unraveling in front of me when I start to ponder this impossible dream. But then I realize, I can't possibly live in a tiny house/schoolie because I would probably buy a whole bunch of junk, fill it up, and end up consumed by my own consumerism, ending up back at a job I hate and back in hamster wheel of work - buy - consume - need place to put it - work some more.

My kids really do better with time spent and don't really need stuff. They love going to the park, having adventures, spending time talking/being social (which they need and crave) and just being around family and friends. I don't need a million shiny things to make this happen! What have I been doing with my life!?

So now - I contemplate all of the days I've set aside to do mindless shopping because society tells me to. Birthdays, and Holidays like Valentines day (blatant consumerism) all the way to Holiday/Christmas time.🎄 I buy so much stuff throughout the year and on their birthdays that I can't for the life of me think of what they would possibly need at the end of the year!

I write all this to say that I celebrate the death of consumerism for me today! Today is the last day I will spend money on wants and all wants. I'm testing my self-control in not buying more and more and it starts with little things.

• Bringing my lunch to work instead of consuming what I see outside
• Not feeling obligated to put a hundred frigging presents under the tree (do you know how many toys I find that they never even opened the box? just ripped off the paper? UGH)
• Getting rid of stuff in the house that I don't use (more minimalism - less time cleaning; more time to spend with kids)
• Getting up early to appreciate the things I DO spend money on (getting my butt up to go to the gym of which I spend money on a membership - so I should get my money's worth EY!)
• Just getting up early!! Appreciating the day and time to spend with my kids
• Investing in experiences and trying not to feel obligated to buy, buy, BUY

As I write, I see this list is a bit daunting but I'm determined to end this cycle so that my kids don't feel this way when they get older. I don't want them to be a slave to branding, and buying stuff they don't need just to impress someone they don't care about.

Throughout this year, spending time with my friends and family has really sustained me and the more I look around and notice that stuff isn't doing it for me, the more I realize that the fog is lifting and that I can become a better person by letting go and giving in to what really makes me happy. Anxiety is a bitch, but it sure is bringing about some major life lessons I needed to learn. 💯💯

Special Needs or Retarded?

 Its Sunday morning, and already I'm in trouble. I flew off the handle about a comment on Facebook regarding a child displaying bad behavior and the caption read ADHD - Ain't no Discipline (or Daddy) at Home Disorder!

Instantly I was upset on many different levels.

1. Is this idiot for real? 
2. Is this what my child is going to have to deal with in the future?
3. Are people really this closed minded regarding special needs children?
4. Did they mean to be this ignorant, or is this how they REALLY feel?

I had to take a good look at myself and how I see the world. I hate labels on all fronts because I believe people in general are more than what their label suggests, but as a Mom of a child that has been diagnosed with both Autism and ADHD, I am just not sure how others outside of our immediate circle will see him. In our small circle and because we HAD to be EDUCATED, we regard William as Special Needs or his actual diagnosis when describing him, but what do others say in context of my son and others like him. 

The sad fact is, most people either in front of my face or behind my back are going to call my son RETARDED.  Schools are going to think of him that way. Educated and Non-educated folks are going to think of him that way. Society is going to think of him that way. I do all that I can to educate others by blogging and being as active in the community as I can, but no amount of education is ever going to reach people enough to stop using that word or even believe that his diagnosis is REAL (yes there are really people that believe I make this SHIT UP!) 

Here's a list of the wonderful things people have to say about my son's diagnosis:

• His issues are made up
• Your imagining things
• He's not bad. Are you sure somethings wrong with him? (after 6 years of continuous therapy)
• That diagnosis (ADHD) is made up so drug companies can make money 

I know at the end of the day, people are going to believe what they want to believe and no amount of education or examples of children will change their mind. So they live in this world of conspiracy theories and ignorance and just politely say oh my bad, I didn't know YOUR child was RETARDED. Sorry. 

Because I cannot control the perception of the world, I KNOW that most people will regard my son as either a WEIRDO or RETARDED and it breaks my heart that I will never be able to do anything about it. In my community (which happens to be African-American) I know that this will occur more frequently than in other communities and for that, I must swallow my pride, walk tall and continue to educate and advocate for my son the best way I know how.  However, I know that these labels will still affect me and my family FOREVER, and that is never going to sit right with me, no matter what.

So in conclusion, I still don't know what to do. Either accept the label and excuse their ignorance, or stick my chest out and give a holy hell educated rant on the labels I use. Labels are labels, but words really can hurt and teaching people to think before speaking would NEVER work. 

How do you handle these situations with your special situation?

A good defense is the best offense...especially for ignorant onlookers

Today, I allowed myself to get angry! Most parents of special needs child try to calm their children down in a polite and quiet way without causing extra eyes to gaze upon them and make them feel more uncomfortable. Today, was not one of those days. As I scrolled through my facebook feed, I paused to see this pictured posted by one of my so called "friends" (I use this term loosely since I will be deleting them shortly.) I was almost shocked to see that someone who knew me and my son's situation would even have the audacity to A. post this nonsense and B. proudly agree and say that they "have been saying this for years." As a parent of a child that is both Autistic and ADHD I took offense and proceeded to tell this person off, but thought better about it knowing that I not only represent myself, but my son, my family, and my special needs community. If this is the message that other people have, what do you say to those that stare at you when you are dealing with a public meltdown, or those that have these types of things to say regarding children with special needs. I'd like to think that people are open minded to learning instead of spouting ignorance and foretelling their stupidity to the rest of the world, but I know in my mind that that is not the case. I almost feel sorry for the people that say that this is a "made up" diagnosis or (my favorite) "why are they just now diagnosis this, back in the day you never heard of this. those kids were just labeled as bad". Well, all I can say is times change and things change. We don't talk about things like polio because we've all but wiped out that threat, but back in the day, that used to be common. Now there are other disabilities to discuss and people can't just roll with the times. They have to find some way to undercut medicine or the special needs community in order to feel better about themselves, and that my friend is the definition of SAD! Sorry Ass Deadbeats who walk around feeling better about themselves by putting others with disabilities down. Well I'm not hiding my family from the public. I'm also not apologizing for having to deal with a mini meltdown or two. As a parent, its my job to teach my children (special needs or not) how to conduct themselves in public and if a teachable moment happens to be in the middle of an eruption, then so BE IT! Society and idiots that choose to live in a time warp bubble will just have to roll with the punches, or grow to be old and HOPE that these children that they are putting down today grow up to be law abiding, wage earning, citizens taking care of the older generation that spit upon them when they were growing up.
I'm here to tell you that you have no excuse. Get the right message instead of purporting the wrong message. As a parent of a special needs child, I am not afraid to conduct teachable moments to random adults either!

Raising an Autistic Trayvon Martin

As I observe the trial from my safe little desk and internet connection, I am drawn to 2 things swimming inside my head. A. Is this what every black teenager/man has to go through at one time or another (profiling) and B. What should I instill in my child so that he won't be a victim like this. The hard reality of the situation is, my boy has it worse due to his disability. My son is a sweet, loving and affectionate child, but at the same time, his social skills are lacking which could make him easy prey for a police officer or another person to tag him as a threat. Instinctively, my boy uses fleeting or little to no eye contact. When people look suspicious, it is usually because they are not looking you directly in the eye. We and police officers use this body language measurement to identify who they think may have done some harm. The problem is, my boy already has 2 strikes against him. 1. He's black and 2. He's got a disability that inhibits his social skills. He has to work twice as hard to carry on a conversation without people thinking there is some different about him. How should I arm him against racial profiling? How are we supposed teach our children that our neighborhoods are safe, its just the neighbors you gotta look out for. This trial brings tears to my eyes know that my child could be a victim of senseless violence due to an idiots use of force thrown against him. There is training that can be done for police officers, but what about the average joe with a gun permit and the means to buy whatever weapon they wish. What should I arm my child with? Education isn't going to help since we took that out of the equation for a gun permit. Its hilarious that the car insurance companies give you a better rate for being educated, but any yahoo with NO EDUCATION, just proof of age, can go and get a gun.
Are we so blinded by the media that we can't even see the rifle pointing at us and the safety off? We are committing a crime everyday called Involuntary Manslaughter. Its when you put your children in harms way ON PURPOSE, cause we are not fighting enough to do something about it! Raise your voice and save our children!

Behavior Improvements in affect thanks to the medication

I always celebrate the little things he does, but this one was a show stopper! Since starting his current placement, William has never had a whole week (5 days) of good behavior. We've tried diet, sensory vests, bumpy seats, fidget toys, weighted lap blankets, sensory breaks... (you name it, we've tried it). We were lucky to get 3 days a week with a good check mark AND he has a TSS. But this week, since starting medication (we didn't even inform his teachers that we started the meds so she has no idea) he finally got 5 good days in a row. He is usually dinged for not being able to sit still or not paying attention and not following directions. His teacher is quick to check these boxes if he does anything to hinder his education like not copying notes or just generally staring out of the window. This week, her comments were that William has been very good in class and is able to participate and keep up with other classmates. He is able to focus and retain the information given to him. He also is thriving with his personality and is able to express himself better when speaking to us and telling us about his day. On the weekends, we are not giving him the medication and letting him have a break. We totally see the difference from giving him meds to not having the medication. He is back to his old self, but at least we recognize it and see how it is helping him. We don't give him the maximum dose, but just enough to get him through his day. 

As his mom, I still have reservations about medicating my child for school, but I do see that he is much happier with his school and academic performance and he is so proud of himself. He is excited to do good in school and not to be so down on himself when he was trying so hard to concentrate. Sometimes he would tell us "my brain isn't working" and I would feel so bad for him knowing that he is trying is best but just not able to perform like he wanted to. The medication is helping him focus on the things he wants to accomplish instead of worrying about his movements and his behavior. We will continue to monitor his progress and not give him the medicine unless he really needs it. Now if we could just find a good placement for him, now that he's happy and thriving....... 

Life is never dull for this complex, sweet, and loving little man I am blessed to raise. 

What good is school choice, if there are no schools to choose from....

And the saga for a new school continues..... unbeknownst to me......
Yesterday we all come home from a fine day of work and school to discover that the school I registered both children to has kindly refunded our money and as you can see from the letter, will only accept Danielle to be tested for their fine establishment. Keep in mind that I registered the children in March and paid the fee in cash so that there would be no problems. I was so upset last night thinking that they waited over 2 months to tell me that they were not willing to accept my son. They had not asked me for his IEP or any information regarding his disability. I did disclose that he has Autism and ADHD, but that is the only information I had to give them. Based on just this alone, they kindly forwarded this letter basically stating that they would not accept William, but would consider Danielle. Now as a parent, and a student studying to become a special education teacher, I have to say that I am quite frustrated by the ignorance of school officials when it comes to children with learning differences. They know NOTHING and continue to perpetuate stereotypes in regards to students. I am not exactly sure why they decided to tell me so late in the school year and why they decided to preface that they had 30 children in their classroom (which makes no difference since a public school class size is 35+ anyway in our neighborhood school). My only questions is, why are the people in charge the most ignorant and untolerable people. They don't ask questions and they waste time that I do not have.
Finding a good school for your special needs child is a very long and exhaustive process. For them to not even ask for documents or information from me to see if he would be able to thrive (which I am confident he will based on his progress and his meds). It is totally frustrating to speak with these people (mind you they are supposed to be somewhat religious) but are extremely dismissive and non-supportive. They did not even ask to see his IEP, they just denied him off of his disability. I am not sure why schools leave people like this in charge, and then wonder why they are closing unproductive drop out schools that are not helping our students. I find it absolutely appauling that they leave people in these positions of power, yet they are not educated on children with learning differences and are fearful that these children will bring them down in some way. So much for religious schools being open to all types of children. WOW! Isn't that a shock! A Catholic school discriminating. Who knew?! Now I'm perpetuating a stereotype huh....
I do plan on following up with the Principal to see what the real deal was and I am going to follow-up with the Archdiocese of Philadelphia. What good is school choice, if there are no schools to choose from?

To medicate, or not to medicate? That is the question........

Today marks a significant step in our understanding and processing for my son. We have a developmental pediatric appointment for William and the topic of discussion, medication. We've been against even discussing medication for a while, but now that we've come close to the end of his 1st grade school year, we've noticed that the demands placed upon him for school are becoming overwhelming for William and we figured, we better start having the discussion now, before we hit 2nd grade. Just to you a bit of history.........

William walked into school and tried his best everyday. We saw that he was having trouble paying attention and lacked focus so we enlisted the help of his Behavior Specialist and were approved for TSS services 15 hours a week (3 hours a day) in the morning to help with his behaviors and focus. We also bought a weighted vest, bumpy seat for sitting, and a lap pad to keep him snug and somewhat comfortable while trying to stay focused and seated in the classroom. He gets a few movement breaks and gets 2 recess periods to burn off some steam, but for the most part, this still didn't help him when trying to concentrate or be able to focus when distractions are always occurring even in a class of 18 kids. Then we tried the diet method. We eliminated gluten, and introduced a gluten free vegan breakfast, lunch and snack option which helped somewhat to decrease his hyperactivity, but still didn't really address his focus and attention.

Today, I would categorize his strengths in reading and he has LOADS of focus for computer time (which he excels in and has become teachers helper for his fellow classmates). His weaknesses would be attention, copying things off the board, taking tests (when there's so much on the paper, he really gets overwhelmed), being able to listen to a story enough to retell it or get the summary from it (we have to show him little movies of people reading and acting out the story for him to be able to recall it) and following academic directions (pencils down, fidgeting, getting out of his seat when things happen outside the window).

Today, we will embark on this conversation with the doctor, to see if there is any more that we can do or if there is a low dose medicine he can use throughout the week that would help him academically and since he is diagnosed with both Autism and ADHD, I am hoping that we can take good suggestions from the doctor to help William feel more confident and better prepare him for next academic year.

I have to admit, William really puts forth so much effort, and he works so hard. He is an inspiration to me for his patience and tenacity. I just hope I am doing what's best for him to take some of the burden of trying to control his impulsive nature so that he can concentrate on his work and focus without having to worry about these things.

If you have gone through a similar situation, I welcome your feedback.

Wish us luck and have a great day!

Day 1: Plant Based and A Good Day

Day One 1: Went off without a hitch. As you can see from the chart, there are alot of ways he could go with his day, but for a Monday, this is stellar. Usually it takes William until Tuesday or Wednesday to get back into the swing of things at school. He is usually still wired and fired up from the weekend and it takes him a day or two to cool it down to focus in school. It is great that he didn't get marked for any thing but a good day. Usually his marks include not following directions or not listening (which I feel is common for a kid diagnosed with both Autism and ADHD, but what do I know). The fact that neither of these was checked on a Monday is clearly saying something. Lunch was served with a salad with extra virgin olive oil dressing, broccoli, carrots, lettuce, chia seeds and walnuts. He didn't eat the walnuts, but he ate everything else, including the pineapple and gluten free popcorn. He always drinks water, and nothing but water so he was happy.

Tomorrow's another day, so we shall see how he does with my next creation (gluten-free vegan pizza!) I hope by the end of this experiment to compile kid friendly lunch box recipes to share with everyone. Seems like that is really missing in the GFV world. Most recipes aren't kid tested first and don't look that appealing in my opinion. This will be a stapler when I can't find anything else to do.

Psychoeducational Evaluation: A Wealth of Information

William at the Please Touch Museum

Decision Making at its Best!

As a ASD mom, I felt that I needed more information in order to make a good decision on my son's 1st grade school placement. Our home school district insisted that William didn't need anything special an only needed help with attention and maybe some math support. I fought a long hard battle with them regarding the school they picked out for us (seems we had no choice in the matter) and the curriculum taught there (I have no faith in "Success For All" especially when I researched the PSSA scores for the school which were horrible). After much thought and analysis, we decided to send William to a catholic school. We figured, since he was going to be in a regular classroom with 30+ kids and one teacher anyway, we might as well put him in a school where we know they would be a bit strict on behavior and a bit rigorous in their teaching. So far since the start of September, William has been doing quite well. He titrated from having a TSS (still has a Behavior specialist) in the summertime and has been on his own thriving ever since. He just got a 100 on his 2nd week's spelling test and is grasping the math concepts faster than I can show him everything. I am amazed at the progress he is making and the amount of homework and structure put forth in the catholic school education.
After starting the school year, we made an appointment for a psychoeducation testing which included the ADOS and some other testing. They confirmed right away, that William is able to learn in a regular classroom and asked me to monitor his behavior with his teacher to see if TSS was needed. I was so happy that we made the right decision, but in the back of my mind, I felt like I just made a good guess in where he should attend. The Psychoeducational evaluation was an invaluable tool and I will continue to refer to this document in order to make better decisions about his health and education. I wonder... as a parent of an ASD child, do you find yourself making decisions based on guessing or do you wait to get the 2nd opinion?

We Shall Overcome! and we have!

Yes, it is official. My son William is going to graduate from Pre-K into Kindergarten. It has been a tremendous mountain to climb, but in the end, it has paid off in spades. He will be 5 in September and he will be graduating in a class of his peers. He is very verbal, smart, still a bit light in the social department but he is getting better. His biggest improvement is the fact that he is starting to notice when others are hurt or are in pain. He is compelled to ask if you are allright and wants to rub your back or your face to make sure you are not hurt. SO WONDERFUL! This from a child who 2 years ago, could care less what your facial expressions meant even when you were describing your mood. Now he feels pain, love, sadness, joy and expresses it every moment his he has. He has manners, always asks politely, the occasional tantrum here and there, but nothing like before (where he was kicking and screaming and flopping himself on the floor). He used to bite teachers and other kids, he used to push you around to get what he wanted. Now he asks you politely and with manners to get what he wants. He would kick his shoes off every chance he got. Now he could care less about that and concentrate on his math and trying to write his ABC's.

The other day, when I was picking him up from school, he was sitting at a computer and said "look mommy, i wrote my name!". He typed WILLIAM on the screen in all caps and I almost fainted in the classroom. When his teacher told me he was ready to graduate, my heart stopped. It has taken us so long to find a proper placement for him that I was afraid to embark on a new chapter of his life (finding another typical structured placement for him). But, his teacher insisted that he is smart and a quick learner and his behavior is much improved. I had to give in and say that I would be glad that he graduates to the next level and I never thought I would see the day. The day that my Autistic child would graduate in a class of his peers and be ready for the next level. Throughout all the struggle and heartache came this wonderful story of triumph and tribulation that I can measure and see from 18 months old until now. It is an amazing feeling to step back and not have to over analyze the behaviors and learning difficulties that have challenged him since he was barely 2. I can just sit back and bask in the glow of this moment and hope that there are more good moments like this than the bad moments we've had in the past. I am so proud of him. He brings me joy every day of my life and my life wouldn't be the same without him. Mommy loves you. I hope someone else can share there story of the Autism triumph as well.

I've returmed!

After many months of pain and struggle with school district personnel, I have returned. My son is in a better place and it only took 6 months for this to happen. I know unbelievable. I swear, this system they have going is set-up for the parent to literally fail unless they are persistent, read the rules, and remind the school district personnel about them or those people will lie to your face. I've gone to libraries, researched on the internet and dove my life into the task of finding a proper preschool for my son and I swear I had to be a part-time lawyer for atleast 3 meetings. I had meetings with at least 10 people at one IEP meeting and they presented me with 33 separate goals where we had to go through each and everyone of them to determine if they were ok. Most were, but we didn't even have enough time to go through them all. AND we disagreed on placement. I had a speech therapist tell me he didn't have a speech problem but she was just throwing 30 minutes in there a week so he could just keep up. I kept my cool and just did all the research all could in order to get my son into a full time autistic support class room with OT, Speech and ABA therapy. Hope to hear about your experiences with IEP meetings. I would love to change the horrible format they have going on here.

Potty Training with PECS

My son is 2 going on 3 and one of the hardest things I've ever had to do is potty train him. After numerous attempts with musical potty's, potty seats on the toilet and food encouragement we finally found a system that helps him ...... PECS.

The PECS system is actually working along with a daily schedule of events so that he knows when I will request for him to go to the potty. Let me spell it out.

We have a PECS chart of a daily schedule and inbetween every event I have a potty on the schedule so that he knows after this then we potty (just to get him started). But let me back up a moment on my method...

First days - tried to chart how many times he did #1 and #2 in his diaper. We devised the picture schedule and stuck to scheduled eating times so that I could time when I checked his diaper.

This took about 2 days or so to get a good chart; took a couple more days just to get him used to the schedule.

Next - I started to incorporate the potty at these times that I charted and added it to the Picture schedule. My son already knew what the potty was so I thought this would be no problem. Boy was I wrong. Everytime he went to the potty he would HOLD it. He then held it until he got his pull-up on and did everything in the Pull-up. How frustrating was this for me! I couldn't let that stop me though so I thought of Plan B. How about we eliminate the Pull-ups and leave his bottom naked all day. You know where this is going right? Well he held it and held it until he just had to go and this was not on the scheduled chart when this occured! Ugh! what to do right?

Then I found this ingenious invention.....
Tinkle Toonz sensor Saved the Day! This is the sensor that goes into the Tinkle Toonz potty. You can acutally just purchase the sensor and place it in their underware so at the moment they decided to do #1 it starts to sing and then you can train them to sit on the potty.
Since my son insisted on going in the pull-up I had to really train him to go to the potty so ...
Step 1 - Back to the schedule for meals
Step2 - No more pull-ups @ home - only training pants.. we use the all in one kind
Step 3 - sensor in and we go according to the schedule. If he decides to hold it, it's ok cause the sensor will tell me when he starts
Step 4 - Make sure the TV and anything else is turned down to a reasonable volume so you can hear the sensor
Step 5 - Have a potty close by- where you are and have the bathroom door open and ready. Make sure nothing is in your way so you can run like the wind when they start to go. My son can start and stop so I run like the wind and I also take him to the potty when I have to go, just in case this motivates him as well.
Have your PECS potty card and PECS potty schedule in the bathroom and go through the steps while on the schedule and while off - in a hurry - this will ensure that your child understands thoroughly. Make sure your schedule has the times marked when your child will go #2. They usually go at the same time every day, the sensor will not detect this. After a while, my son thought it was fun to be whisked away to the bathroom or the potty. Since he thinks it's a game, he now tells me ( in his own way) It's time to run and then comes to get me to run to the potty. Because I am happy and excited and we cheer afterwards he loves it. We still have accidents but this is helping us tremendously.
If you are interested in the Tinkle Toonz potty or sensor you can find this at http://www.tinkletoonz.com/. They also have a really good article about autism and potty training at http://www.tinkletoonz.com/special_needs.html.
I found the PECS system for potty training at http://www.do2learn.com/picturecards/printcards/2inch/imagegridswords/bathroomword.htm
Let me know how it's going! :)

Philadelphia Walk Now for Autism Update

We’re getting close…
Saturday, September 20, 2008
Citizens Bank Park
Registration and Resource Fair: 8:00 AM
Stage Show: 9:30 AM
Walk Start: 10:00 AM

Our Kick Off was a Great Success
On Thursday, July 10th, the 2008 walk Kick Off was held at the state of the art CBS 3/The CW Philly 57 studio, with 150 team captains, and their families and friends in attendance.
CBS 3 evening news anchors, Susan Barnett and Chris May graciously hosted the event, while Michael Colleran, President and General Manager of CBS 3 and the CW Philly 57, and Marciarose Shestack, pioneering broadcast journalist shared their personal connections to autism, and the importance of supporting autism research through the walk program. Our Walk Chair, Stacey Fliegelman, joined this group on stage, and led us through the evening’s main program with humor and enthusiasm.
The evening was an opportunity for many of our returning teams to share successful tips and stories with so many of the new teams in attendance…can you believe that we have 200 new teams registered this year? We were grateful to have the opportunity to catch up with old friends, and to celebrate with our new ones!
Everyone that attended received a team captain’s folder with a multitude of fundraising and awareness-related tools. If you would like to receive a packet, please email philadelphia@autismspeaks.org.
We would like to thank our 2008 Walk Committee for making the event a success from the planning stages through to clean-up! Thank you for your tireless hours of dedication, and hard work.
The Walk is Shaping Up
Thanks to all of you, our walk totals are growing each day…here’s where we are today:
We have 374 teams, and 95 individual walkers signed up. To register now, visit www.walknowforautism.org/philadelphia. It just takes 2 minutes to get signed up! If you need assistance, please call (856) 858-5400.
We have raised $172,214. Our goal is to surpass the $1 million mark this year. Remember, you can use the walk website as a fundraising tool. Send an email to everyone you know from your personal headquarters, and ask them to support you with a $5, $10, $25, or $100 donation. If you ask 20 people for a $25 donation, you’ll raise $500 in no time! Remember to personalize your page…let them know why you support the walk, and help to spread autism awareness.
The Walk Route Has Changed
Look out for a new and improved event set-up this year! We have changed the direction of the walk route slightly to make it more enjoyable and efficient and have moved registration and tee-shirts closer to the main stage and walk start area for convenience.
The walk route is 1 mile, and in addition to the usual parking lot route, it will partially wrap around the stadium, and will finish inside the stadium at the 1st base gate. This will directly lead you to all of our Resource Fair Vendors, children’s entertainers, and moon bounces on the concourse level. We will include further event instructions, and a map of the stadium/walk route in our next email blast. Please call (856) 858-5400, or email philadelphia@autismspeaks.org for more details.
Calling All Service Providers
We’re looking for local autism service providers to participate in our Community Resource Fair at the walk. This is an amazing opportunity for you to share your services with the thousands of families in attendance. For more information or a registration form, please email philadelphia@autismspeaks.org, or call (856) 858-5400.
Do You Have an Uplifting and Interesting Story to Share?
We are looking for new stories to share with the media as we draw closer to our walk. If you have an interesting experience to share, or have a great walk-related success story, please contact us. Email Philadelphia@autismspeaks.org, or call (856) 858-5400.
Team Wrap-Around Corner
As many of you know, team wrap-around events are a successful and fun way for you to fundraise for your team. Here’s what some of our teams have done successfully:
Eleni’s Entourage held a reception and silent auction at the Concordville Inn to fundraise for their walk team, as well as the Timothy School. The event was attended by hundreds!
Kidz for a Kure held a lemonade stand in Chestnut Hill this past weekend, and raised nearly $300 in just a couple of hours!
JEVS-CLHS has been quite successful in its bake sale and iced tea stand sales. The team has raised nearly $200 from these efforts alone! They’re also selling soft pretzels and puzzle pieces!
Walking for Genavieve continues their successful fundraising events. After completing a wonderful jazz festival at the Stockton Inn, they held a birthday party at their home and instead of gifts for their daughter, asked for donations, and now they’re planning a community coin drop and Tastefully Simple event. They’ve raised nearly $3,600!
All 4 Luca recently held an event at their salon, Shaving Grace, where men were encouraged to shave their heads! Proceeds from each hair cut benefited their team. The event was broadcast live on The Big Talker 1210 AM with Michael Smerconish. They raised $2,450!
Dever’s Diamonds brought puzzle pieces to their local bank, and asked them to sell them to customers for $1. The bank agreed, and even started them off with a generous donation!
Community Grants Cycle
We are once again seeking proposals to fund projects to enhance the lives of those affected by autism spectrum disorders. Proposals for these Family Services grants are sought in the following areas: recreation/community activities, education, equipment/support technology, or young adult/adult services, educators, trainers, and service providers who work with individuals with autism are invited to apply. Applications are due by September 26, 2008 at 11:59 pm. Since the inception of Autism Speaks’ Family Services Community Grant Program in December 2007, over $1 million has been awarded to 50 community programs across the nation. For more information, please visit www.autismspeaks.org/press/community_grants.
Upcoming Community Events
Monday, August 4, 2008
Join the Wilmington Blue Rocks at Frawley Stadium to Strike Out Autism. Bring your family and friends out to the ballpark for an action packed baseball game and enjoy the fun, family atmosphere of Blue Rocks baseball while helping our cause.
$2 of every ticket sold will be donated back to Autism Speaks, provided you use the attached form to order tickets. The ceremonial 1st pitch will be thrown by an Autism Speaks Foundation representative/guest! There will be a Silent Auction during the game featuring autographed items, ticket, luxury suites and much more. Blue Rocks T-shirts will be given to the first 1,000 fans (Courtesy of AT&T Mobility). Visit this link for the order form that can be faxed or mailed to the Blue Rocks.
Thanks for your support! Please let us know if you need anything, and remember to check www.autismspeaks.org/philadelphia for more details.

To join my team, please go to my personal page at http://www.walknowforautism.org/philadelphia/personal/ccharrisse and join! I'll see you there :)

Is it me? Am I Wrong?

I feel like everytime I get ready to go to one of these Dr's appoitments that I am gearing up for a prize fight. Does anyone else feel this way too. It's like I have to be on my toes, come with a book of research methods and ask the best and most specific questions in order to get what my son needs as far as treatment. It's like noone wants to come out and say "This is what he needs"; Everything is just in general. Like other Moms of ASD kid know - each child is different and needs a different treatment plan.
So why can't Docs be specific about our kids needs? Do we have to visit them more, do they need to run more tests, or is it because they really don't know and since we know our kids, we should figure out(by trial and error) what supposed to work and what doesn't. Does anyone else think this is horrifying? I haven't gone to college for 10+ years to be a Dr. What the hell do I know. All I know is that I am basically in the dark about big medical words and I am just like a kid in a candy store with all these types of treatments. He responds to this, he didn't like that, this seems to extreme, this doesn't seem extreme enough... this is like torture!! Is it me or is "recommendations" just not good enough. Is it my Docs, cause I have to be honest here.. I thought I was getting some of the best treatment I could find, but I guess that all depends on your wallet these days.
I cannot afford to be a Work at Home mom, atleast not yet. I am trying to be, but finding trustworthy Work at home jobs is an entirely different monster that I just don't have time for. Has anyone else had to cope with these huge issues?

What are The Signs of Autism

Watch out for the signs of autism. Sad as it is, but experts are now saying that the signs of autism are on the rise. And this is becoming a major concern not only for the parents but for the state as well. Because children are the future of our society, and so we want them to be in the best of health. So what are the signs of autism, at what stages in life do they appear, and what can you do when they come up? These are the issues we are discussing here.

Children have special characteristics, and this is true worldwide and across societies. A child who is a bit of a loner is a bit odd and unnatural. This is cause for concern because he may be suffering from autism. When a child cannot mix with others of his age and prefers to stay by his own, and does not even like his toys, it might be autism that is causing this. Other signs of autism include a general indifference to everything around him, hates it when someone cuddles him, and does not even respond when his name is called. However the signs of autism may also include a sudden increase in activity. Such a child may avoid eye contact and may also be either too fearful, or extremely daring, depending from case to case. He may also experience a physical pain when touched. But at what stage in life are the signs of autism first seen?

Autism is an illness that affects children. And so the signs of autism are seen when the person is very young. Usually the first signs of autism are seen when the kid is about 3 years of age. But interestingly, when he is about 2 or two and a half, there are no sings at all. And then the signs of autism start to appear, but the parents initially fail to understand that it is autism. Sometimes there is mild autism and this makes it even more difficult to identify. Making an autism checklist is a good idea to identify the signs of autism. But when the signs are visible, what can you do?

Whatever you do, never let your child understand that you are worried. Because that can make the situation worse. Keep loving him and show him that you care so much. But taking him to the autism treatment center is a good idea. When the signs of autism appear, you will need help.

Of course you love your child, and so when autism strikes, you are worried sick. This is very natural! What are the medicines you can administer? Do not self administer. When you see the signs of autism, always seek professional help.

What Causes Autism

What causes autism? Here is an area that has seen a lot of studying and research in the recent times. And the jury is as yet undecided. That is because though we are all seeing an obvious in the reported cases of autism in recent times, but no one is sure, what are the reasons. What causes autism is till today an unanswered question, and the people asking them are many. A lot of newsprint (newspapers and magazines) have been spent on the subject. And a lot of prime time slots have been allotted with discussions, chat shows and features. A lot of Internet space has also been extinguished. But the answer on what causes autism is Â'not out thereÂ'. Here, we too are trying to find an answer to the question Â- what causes autism?

Autism is a debilitating condition that affects the young people Â- when they are about 3 years of age. It is very frustrating because quite suddenly it seems that the child has lost all interest in life. He does not play, does not mix with others, does not respond to affection and does not even respond when loved. He actually hates to be cuddled and goes away to sit in a corner, all by himself, alone. Parents naturally want to know what happened. They feel bothered and want an answer, what causes autism? But when no answer is coming, it adds to the concern. What do the experts have to say?



Though the experts are far from certain, but they already have a few early starts. And that is the good news. They are beginning to get positive answers to the questions on the causes of autism. They now believe that the disease can be attributed to the environment all around the child, and there are also genetic connections. It has been seen that there is a chance of autism if there has been a history of the disease in the family. Further, if one child has it, then the chance of the other getting it also increases. Are these answers to the question Â- what causes autism? May be not, but they are indicators indeed.

So do not be frustrated with the question what causes autism. Better, join the hunt and try to find an answer to it. The levels of autism can also differ. Meaning that not all children will have the same degree of the illness. Some will have more, and in the others, the symptoms will be mild.

So many people are asking these days what causes autism. Can diet also play a role? There is no final answer on this one too. It seems that it will take a while before we all know what causes autism.

Trying out the Vegan lifestyle

In order to try to decrease some of my son's behaviors, we are in the process of going vegetarian and switching to vegan. I used to be a vegetarian before I got married and pregnant, but as I began the pregnancy, my OB stressed that I needed meat to sustain energy and protein. Now that I look back, I think the only thing I was doing was eating lots of starches and not enough sustainable protein. At any rate, I've been eating meat ever since and my weight has ballooned tremendously. In researching the Gluten free Casein free diet, I see that most of the vegan lifestyle is very similar. Right now I'm strictly trying this for my autistic son. I've replaced chicken nuggets with the "not meat" nuggets and replaced lunch meat with the veggie deli meats (just for lunch time at school). He already loves lots of fruits, but I am working on the hiding of the vegetables in his overall meals. He only drinks water - to reduce his sugar intake. He gets no dairy - cause dairy makes him extra hyper, and very little bread - cause he likes bread toooo much. I'd like to know if anyone has tried to switch their ASD child to vegan, and has it made a difference in their behavior and/ or well-being?

Best ASD DVD - promotes speech

I had a hard time trying to find the right developmental toys for William. Through this blog, I will show some great picks that have helped my son to talk and develop thus far. i hope this helps other parents as we navigate through the endless toy stores and saving a few bucks ain't bad either.
The first toy that ever got my son talking (He was 15 months old and didn't point, talk or anything. Not a sound would come out of him; it's like he was a ghost just following you around the room) was a DVD called Baby Babbles.
After he watched it a couple of times, he started to repeat and wanted to do some of the things shown in the video. They also have a great Parent Tutorial that teaches you and your child sign language. This got me started in signing to him and from this tape, he had a reference point.

I still put this tape on sometimes just to see how he reacts to it. My husband even found one of the toys they had on the tape and bought it for my son for Christmas.

Our History with Pervasive Developmental Disorder

I guess my post should be about my inspiration... William. He is my 2 year old son who is living with autism. He is a constant joy and has truly changed my life.
We first started to see something different in him at about 14 months.


He was babbling just fine, and then one day, he just stopped talking. We thought he was just a thinker and that he was quiet. He never complained, ate everything (didn't know when he was full) and did a lot of things we thought were "boy like". He enjoyed a lot of ruff play, climbing and tumbling and the feedback I got from family and friends is that he may be a late talker.
I finally got fed-up with the not talking thing around 16 months. I made an appointment with his Pediatrician and wanted to know why my child could not call me mama. She suggested that I call Early Intervention and get him evaluated. His health and growth was normal and I was looking forward to some help in the talking realm. When they evaluated my son, they told me he had a speech delay and that he should see an Occupational Therapist and Special Instructor to help foster communication and steady his balance. I agreed and these specialists came every week.
My work schedule was getting too hectic to be home once a week and I had to move William to another daycare.

Let me backtrack before I go any further. While going through these evaluations, I had another child - my lovely daughter, Danielle. I am married, but most of the children's stuff falls on mommy, but my husband is very supportive of everything that I do for Will.

And the saga continues....
We decided to research a daycare where the therapists could see him and said that they do accept special needs children. After about 3 months, the daycare decided to meet with us and let us know that William needed a TSS (Therapeutic Support) or he needed to go. This would be my first indication that William had a split personality; One personality with others and one with his mommy. With me he was a good boy. Liked to play and get attention, but because he was pretty much the only walking child, he had full range to get up and go as he pleased. These skills did not translate well to a structured daycare setting and rather than conforming to a child, the daycare decided that he needed to conform to them.
After I picked myself up off the floor from the thoughts of having my son be a daycare dropout, I researched an agency that could evaluate my son and let me know if he can get TSS. This is where I first heard of the Autism Spectrum and how he may need to see a Developmental Pediatrician to get diagnosed.
I thought that the bad news just kept getting worse and worse. I had all kinds of thoughts and worries and didn't know what to think. I think I cried for days but I knew I had to do something about this.
While still participating in Early Intervention, I decided to ask his specialists about this. They informed me that this was a good idea but that William was making progress in trying to babble, but just to be sure, go make the appointment. This took FOREVER to get an appointment, but we did finally see a DP and that's when we got the diagnosis, Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS).
In one way, I was sort of relieved to be able to call it something. In another way, I was not relieved for others to have a label to put on my son. I am totally against labeling people because I think others tend to lean on that label to limit ones abilities, and I knew William could achieve so much more than anyone could imagine.
So with this diagnosis, we ventured on to get him more services like Speech Therapy added on to the other specialists from Early Intervention. We also left that daycare and decided to take a vacation while researching another program best suited for HIS talents.
We decided on the YMCA because William liked art and music so much. They were experienced with kids on the spectrum and even his therapists were happy with the change. We still decided to pursue a TSS, but instead we were awarded a Behavior Specialist.
Now William sees aSpecial Instructor, Speech Therapist, Occupational Therapist and Behavior Specialist once a week, every week. He also gets Private Speech and OT twice a week. He picks up his social behavior from being with children his own age at the Y, and he is doing so much better through Sign Language and the PECS system.
Through it all, I thought my marriage was going to fall apart, we were going to be penniless trying to pay for therapy, and that I was going to lose my job over all the days I had to take him to the Dr.
This is a story of hope because we have survived as a couple (with bumps and bruises along the way) and we are struggling to spend time and money with him but we see the results and he's getting better and better.
We've changed his diet, well actually he's changed our diet, and we've become better parents to our daughter by taking time to celebrate the good things instead of the bad. This has inspired me to write a book (which I am working on as I blog) and maybe even start a business.
He has challenged me in ways that I could never dream of without him and as days pass, worries I carry keep falling away.