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!

Separate but Equal? Philadelphia Charter Schools vs. Philadelphia Public Schools

As I sit here on a Tuesday afternoon, I am compelled to write about the injustice facing Philadelphia parents today and I'm eerily reminded of Plessy vs. Ferguson, the separate but equal case that governed our educational system for almost 70 years. Looking back at this policy, it is strangely quite similar to the setup we have in Philadelphia regarding business or private run schools (charter) vs public Philadelphia schools. As a parent of a special needs child, I am almost shocked that no one has thought to put these two ideas together, but I'll take a stab at it!
Separate but equal was deemed unconstitutional through Brown vs The Board of Education, but it seems that there is a new separate but equal that seems to slowly but surely creep up in this modern age.

Charter schools are a separate form of education that is deemed for everyone, but they are all run differently based on the business or private entity that run them. They have flexibility regarding who they hire and how they deliver curriculum to their students. They seem to be run on a totally different plan than district run public schools. Public schools have a set standard in hiring and delivering of the education to students. Teachers hired have to be certified (not always so in charter schools) and they have to follow carefully constructed criteria (IEPs, etc.) in order to comply and be able to obtain funding. Why are we treating these two streams of education so differently? They are both publicly funded school options for all Philadelphia residents. One appears to be better than the other. In my opinion, it appears that charter schools weren't asking for extra money or extra personnel to keep their children safe, but the public schools were. Why are repeating the same mistakes over and over again with regard to education. I thought the entire message of having charter schools was better access to education and to see if we could model all public education to work for all students. Not to separate them, but for them to work together bettering the education for all students receiving a public education which includes charter school students.
I almost feel like there is a set plan to blatantly shift or pull the wool over our eyes so that we do not see the injustice that is going on her today. As it stands, there is separate but UNEQUAL treatment going on in public education of the Philadelphia School system and NOONE, not even our Mayor is doing anything about it! It is deemed unconstitutional for a reason, and as parents we need immediate help to solve this situation. The discrimination has taken a left and shot right to hell regarding the education of our children here and unless we go further than the state (Governor is not interested in helping us) we will get nowhere. What are your thoughts regarding this modern day injustice?

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!

Philadelphia's Education System... Should be called The Have's and The Have Nots....

We are obviously going backwards to before the depression and public education. Its looking more and more like if you  have the money, live in the right place, or just lucky enough to get chosen in a charter school lottery, you have won the jack pot. For all others, get ready for your child to be in MINI PRISON, cause that's really what they should call these remaining schools. Let's look at what they don't have to further prove that these schools are probably WORSE than the state of the art prison the Governor is making ( and probably anticipating every kid in there ending up there)

1. No Gym program - hell even jail has a yard with weights in it - I guess that would be a step up for the children attending these left over schools
2. No Art program - Wonderful, they have no outlet for creativity. I'm almost positive the new jail would have computers for the inmates....
3. No music program - some of these jails have music studios in them. Wow Jail is looking better and better by the minute
4. No extracurricular activities - but I bet there are things to do in jail...
5. NOT ENOUGH STAFF - I'm 100% positive that jail will be fully staffed and probably much safer than any of these leftover schools with the skeleton crew of people they are leaving in charge of these over crowded class rooms full of the students who couldn't go anywhere else.

It appears that all these children need to just wait until they are old enough or commit a crime that will land them in a cushier place then their public education institution. Its really sad when you compare school to jail and jail comes out on top. 

It also appears that the powers that be have made an obvious attempt to put the total responsibility of education on the parents.. and not just any parents. Parents who have the drive to get their children into a charter school or parents who have the money to put their children in private schools or can afford to live in a great area with an exclusive and good public school based on their property. 

In the never ending saga that is education funding, it appears that Philadelphia is really taking this to a new low. So now they are going to fire almost 4,000 people in addition to closing 23 schools. So in theory, what are we parents to do! Here's my take on the state of the system.

It appears that Philadelphia School District is privatizing more schools than willing to run schools and still getting paid the same amount (or more) of money. That Ain't Right! How are you opening up more opportunities for private and parochial schools (EITC program) and giving more to charter schools (run by private entities) but closing and downsizing the schools you actually run and on top of this, you want to increase property tax and try to milk more money out of taxpayers. Hmmmm doesn't seem like you people in charge should be getting paid the same amount of money for managing less people and less schools under your belt. Why are you still getting the same (or more) pay? Why do you feel entitled to not cut your high paying jobs. So much crap has been spewed regarding sacrificing, but the new superintendent (who's been in power for less than 8 months) is still getting paid a hefty amount, I'm sure. In the midst of all this, we Philadelphians, are still paying Ackermans going away package and paying the new Superintendent's salary and I'm sure they want all their money, cause heaven forbid that the people making the most money get cut and not the people making less (such as the almost 4,000 people getting a pink slip). 

What I still can't understand is how are they cramming these kids in these remaining schools without having vice principals, aids, special education supports, and the host of teachers they intend to layoff. Now who is in charge of making these stupid decisions? Aww, yes! A board of unelected people that we cannot get rid of or criticize in any way. On top of this, PA Governor Tom Corbett is blatantly uninterested in education and more interested in making money with this prison scheme that noone politically wants to talk about when confronted with it by reporters. Why are we not dragging this guy through an impeachment process? Why are we not protested his removal from office when he is clearly a part of the problem and not the solution? We are dragging Mayor Nutter through the ground, but the person that controls the purse strings doesn't seem to be feeling the "bad approval rating" effects that the Mayor has been subjected to. There are so many people against educating people who do not have the means to take it, its almost sickening. 

Everyone else (or mainly everyone else's kids) will not get the opportunity to even try to get out of poverty through education. 

You know those stories of folks who got out of a bad situation due to school or opportunities at school.. those stories will die down and those people with the potential to do greater will never seen the light of day. They will go from Overcrowded drop out schools right to New Jail AND by the time they get there, they might actually be Happy about being there cause it will be 10 times better than the school they were attending for 12 - 15 years of their life. 

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?

The Meds seem to be working....

Well today is day 5 of the medicine. We started Mother's day weekend with 5mg of Focalin which seemed to calm William down, but only for about 5 hours. He woke up, had breakfast and took one dose and was not drowsy or over sluggish. He usually lets music from TV shows and other things over-stimulate him, but he was very calm and cool throughout the morning. We asked him questions and we kept a close watch on him, but he appeared to be quite happy and content sitting next to us and watching tv (which he never sits the entire time). We had plans to proceed to Ocean City New Jersey to ride on roller coasters and really test the over stimulation factor of the medicine. Since it appeared to wear off in the afternoon, we gave him another dose of 5mg and proceeded to the boardwalk. William was fantastic! The medicine did not curb his appetite, but it really helped him to focus better, not be overwhelmed by the lights and people, and we were able to breathe a sigh of relief and have a great time.

On Mother's day we gave him a 10mg of Focalin and he had a great day all day. It lasted from 7am - 5pm which was great. We noticed him getting jittery and back to his old self by 6pm and we were ok with that. By that time, it was time for dinner, bath and bed so we agreed to keep him on 10mg on Monday to test out how he would do on a school day.

William has never had 3 good days in a row. He struggled in the past, but it is astounding to see that he is proud of himself and his accomplishments. He is much calmer and not stimulated by things that happen as much as he used to be. We did not tell anyone at the school that we started him on meds, and everyday that we pick him up, someone at the school tells us that he is was doing so good.

I still have mixed emotions and sort of feel guilty that I am giving my son medication to be able to focus, but I see that he is happy and able to enjoy his life without having to control his behavior. If he has a whole week full of good days, we won't know what to do with ourselves.

If you have any information to add or experiences from meds, please feel free to share them with us! 

Onward and upward on the medication train we go...

Yesterday me and William ventured off to our Developmental Pediatrician with data from his teacher and Behavior Specialist in hand to discuss medication. Please understand that this was a very difficult decision for me as we have tried everything to steer clear of this road, but found it inevitable since William tries so hard, but sometimes cannot control his impulsivity. Here is the list of things we tried to avoid the drug road. They include, but are not limited to:

• Weighted Vest
• Non Weighted Compression Vest
• Bumpy Seat for school
• Lap Pad for school and home
• Thicker Kindergarten pencils that do not roll (the rolling kind was causing a distraction)
• Vegan gluten free diet (helped slightly but not overall and will still continue)
• No television during the week
• No video games during the week
• No overstimulation activites such as wrestling with Daddy
• Lotion massages
• Social Stories for behaviors in class
• TSS 3 hours a day (in the morning time when academics are being taught)
• Behavior Specialist (for treatment plan)
• Private Occupational and Speech therapy in the evenings

According to our Development Pediatrician, we have exhausted all the avenues we could are a left just one, which is medication for his ADHD.

Since talking we decided that this weekend we would try him in the lowest dosage of a drug called Focalin http://www.focalinxr.com/info/resources.jsp.

It seemed like the best option for William for the following reasons:

• It doesn't last all day and will only last maybe 8 hours just for school
• We could control when he takes it so that it wears off at night
• After a while, we would only give it to him during the weekdays and not on weekends to give him a break
• Out of all the choices, it seemed like the least when it comes to side effects.

I will administer the lowest dosage this Saturday and Sunday to monitor his behavior and make sure he has little to no adverse affects.

If you have been down this road, or have any insight on the drug, please reply and let me know your thoughts. Also, If you are just totally against medicine all together, I want to reiterate that I understand and I have researched and done as much as I could to not have to do this, but If this is helpful to my son, then I must atleast try this option, before turning my nose up and continue to stand by while he struggles to work 20x harder than his peers.

Lies told by school district

I am awefully fed up by the incompetence of school district personnel.  My son was reevaluated in the fall and I wanted an updated IEP. The school district psychlogist emails me to inform me that reevaluations take place every 3 years. My answer back: So What!! Why would I wait 3 years to tell you people that his diagnosis and setting has changed and he needs an update? Since I already signed the permission to evaluate I guess they don't feel like doing it, but now they have to, like I'm wasting their time or something.  What is wrong with this picture? I know my rights but I know I'm lucky cause some parent might have stopped the process after receiving that email with that made crap they tried to just send me. I am saving that email and posting it so that you all can see the scandalous behavior and tricks the school districts try to pull to get out of servicing students.
Shameful!

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!

BJ's Wholesale: What's gluten-free here?

Is this membership worth it?
maybe

So we ventured off to BJ's Wholesale last night because they had a great deal going on with their membership (14 month instead of 12). I figured, its got to be worth a shot since I'm going to be paying more money for food items due to everything being vegan and gluten free. Well I was slightly dissapointed with their selection of gluten free products. They had a few (and I mean a few) things to offer such as apple/ fruit sauces an these buddy fruits which are great for the lunch boxes. They also had lots of things like organic agave and quinoa at very low regular prices (Quinoa was $4.99 for a big bag which I stocked up on). I was kind of dissapointed at their cereal selection. They didn't have Rice Chex which really was the main reason I went there, but they did have a good price on soy and almond milk. Overall, It was ok, but I'd like to try some of the other wholesale places like Costco and Sam's to see if they offer more selections of allergy free products to their consumers. I want the best bang for my buck, so right now I'd have to say that BJ's may be good for some things, but a bit of a dissapointment in the gluten free product arena.

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.