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!

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.

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.

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.