WHERE HAS THE BOYD FAMILY BEEN?

Austin and the Principal and Vice Principal at Elementary Graduation

Austin and his typical peers side by side graduationg fifth grade

Austin, Mommy, and Beth at Treasure Coast 2012 Walk. My, how he has grown!

Alyssa said "SAY CHEESE", and this is the AUSTIN VERSION! He is such a joker!

I always like to start off with showing off my wonderful son, Austin. It is so hard to believe that he is officially a teenager, after turning 13 yesterday! Time has flown by!

The last time I wrote on here seems like a lifetime ago, and in some ways, I guess it was. Since his successes with inclusion were coming so fast and furious, and his home program kept moving along with him making amazing progress, I was able to take care of some other things in my life, while continuing to advocate for Austin as needed. In April of 2011, Mark and I ended our marriage of 23 years. Life changes, and sometimes we change with it. Enough said.

The kids and I worked very hard, and were blessed with a Habitat for Humanity home through the neighborhood stabilization program. We are incredibly proud of our home that we worked together and received! My daughter, Aubry and I even became construction workers for several weeks, with help from Ms. Magaly and my best friend in the entire world, Tammie Baker. We completed our 300 hours of community service and closed on the house on May 19, 2011.

I have continued working for Autism Speaks in Government Relations, and have been promoted to Manager of Grassroots Development. I have to admit, the last year has been rough as we have settled into our lives with the new circumstances of the kids having two homes, and Mark and I learning to co-parent as a divorced couple. The divorce is yet another reason for my absence from this blog. Some things are better left to be worked out in private.

Austin completed three years at his "MIRACLE PLACEMENT" that we had finally received for him within our school district. He went from working on ABC's and 123's to reading and writing and Math. It took all three years to get to a point that the school allowed him to sit for THE TEST, in our state it is called FCAT. I'm sure you know the one.

Test day came and I was a wreck, but he wasn't. On the first day of testing, I asked him how it was. He shrugged and said "Easy!" and "Fun!". Not exactly what I was expecting...I spoke to Austin's teacher, and with the accommodations in place, Austin took the ENTIRE FCAT in his allotted time. Not only did he take it, he finished it, and never had a SINGLE MELTDOWN! He showed everyone that he absolutely COULD TAKE THE TEST.

We waited, and his scores finally came back. To be honest, they didn't matter to me too much. He had already PASSED with flying colors, as he TOOK THE TEST. His scores showed that he had not made above a 1 on any area. I wasn't truly surprised. He was there to prove he could handle the test, unfortunately, only 3 of his 9 years in school had been focused on preparing him for the test.

The point of this is one that I have said before. We MUST PRESUME INTELLECT! Austin is not intellectually impaired, he has been educationally impaired, but that is about to end! Austin is on Hospital/Home bound placement, doing his 6th grade year at home. He will be working on HIS IEP GOALS, not sharing the time with the other nine children in his class. He will move at his own speed, and FINALLY be given the opportunity to try to catch up with all he has missed over these many years.

There is no reason to cast blame, because blame will never help Austin to reach his full potential at this point. I believe it is safe to say that there is PLENTY of blame to go around.

There, it was hard to finally get you from three years ago to now, but it was necessary in order to understand my next story to tell...It will be called "OPERATION AUSTIN". We will talk soon...

INCLUSION It really works!

These came home in Austin's backpack today, I just had to share them. I feel like yet another barrier for Austin has been knocked down. Austin has FRIENDS!

Translations (in case needed):

1. He always does the movements in Spaulding, Your Friend Crispin

2. Austin you are my best friend.

3. I know that you have autism but you are nice though, from Rebecca

4. I fill your bucket by being your friend

From Adam to Austin

In explanation of these heartfelt notes from members of Austin's class, I need to let you know that he is in a Positive Behavior Support Model School in a Varying Exceptionalities Class. He has a 1:1 Paraprofessional with him at all times, and he fully participates in the same curriculum as the rest of his class.
.     Today, his class discussed the book "How full is your bucket?" The book shows kids how positive things said can make people feel better and happier. The class went on to "Fill each others buckets". 
     Austin's Behavior Assistant, Miss Nicole, and I burst into tears when we read these papers. Here are these adorable, loving  children with various disabilities of their own, and their amazing teacher, Mrs Andres, filling Austin's bucket. They are teaching him by example how to be a friend. They have embraced him completely. 
     His 11th birthday was last week. He came home with hand-made birthday cards from each  child in his class, each and every one a perfect masterpiece crafted with love and care. Every card addressed one of Austin's favorite things, whether it be through a drawing, or a wish that he would get the Thomas Train he wanted. These children truly are friends in every sense of the word to Austin. 
     So, why share this? Well, it actually is a reinforcer for me, that I wanted to share with anyone that will listen. I have pushed for Austin to have time with his non-disabled peers, from the very beginning. I don't mean the illusion of inclusion we see in many Florida schools. I mean the real one, the one that our children are entitled to  by Federal Law in the Individuals with Disabilities Education Act. It is called Least Restrictive Environment.  Austin was included at a local elementary school for several years, while attending his Center School. He would go over and spend an hour with a Gen Ed class. The kids loved him, and he loved going there. eventually, his behavior reached a point that he could no longer go to that school, even with his aide.
      I have wanted to talk about inclusion for a while, because I do believe so strongly in it. I understand that I am not an educator, however, it makes sense to me that the only way for Austin to learn how a typical child behaves in a classroom, is by being in a classroom with typical children. Yes, he is in an ESE classroom, but the kids in his class are indistinguishable from the rest of the children in the school. The really terrific part is that they are treated the same as any other classroom in the school. 
     I have been to an IEP recently for a middle school, where I honestly felt like children with autism and other disabilities were allowed to share the same building with the typical kids, as long as they didn't mix with the other children at the school. Now mind you, all of the Least Restrictive Environment percentages were filled in on the IEP.This child was going to have 33% of his schooling with his non-disabled peers. In looking closer at what that exactly meant, I found a few "interesting"  points. The IEP stated that he would spend time with his non-disabled peers passing between classes, yet I distinctly heard the teacher say her class literally uses a separate hallway for her class. It was also stated that he would have Recess with his non-disabled peers. Correct me if I'm wrong, but in our district, most ELEMENTARY schools are cutting recess due to mandatory PE. When exactly did I miss the addition of  Recess to a Middle Schooler's day? We asked for a 1:1 aide to help him to spend more time with typical children. I so hoped they wouldn't do it, not this time, but...of course the 1:1 Aide is actually MORE restrictive than the classroom he was being assigned to. Give me a break! Do they really think any of us are buying this anymore? Really?
     I have no problem with my son being placed in an ESE classroom, been there, done that. What I do have a problem with is "professionals" trying to convince me that studies (yes, she even read from one to us) show that it is best for our kids to be in these special classes that have less supports. I have seen my son's progress academically and socially, and even emotionally in his current placement with a 1:1 Paraprofessional. Honestly, is it better, or cheaper?
     After 7 years of "doing it their way", Austin moved into his current setting. In his old setting, a Center school for the Developmentally Disabled, his role models had Autism among other disabilities. The class worked on their ABC's and 123's for the bulk of his day, a skill Austin had mastered in Kindergarten. He worked on HIS IEP goals for about a half an hour later in the day. My son was hitting himself over 600 times in a school day. He was there to be educated, not housed. He was learning nothing from the other children in his class other than how to have even more behaviors. He parroted many of theirs.
     Fast forward to today, he learned how to fill his friends' buckets, he is the class clown at times, and yes...he does lead the whole class in Spaulding Phonics because he knows every move, he learned them back when he was allowed to be educated in a General Ed setting. When I go into his classroom, I see happy children learning and sharing and being friends. The big boy in the middle, with the loudest laugh, that's my son. Which is better, really?
     

So much Hope!

I just sat here and watched the opening remarks from the Advancing the Futures for Adults with Autism Congressional briefing from November 13, 2010. Part two is taking place right now in DC. I found the tears rolling as I watched and heard the passion and drive of the many individuals in Washington and across the country. They are being proactive. They are going to try to prepare for the tidal wave of young adults with Autism that we all know are coming. The system is overwhelmed already, with little to no services for the adults that are already out there. I have always been terrified about where we will be when Austin is an adult. Today, I feel more hope.

We, as a community, and as a country have been hamsters on a wheel, running, scrambling to handle the sharp increase in the incidence of Autism, a disability that my Nursing Textbook said is RARE, just about 15 years ago. Strange, isn't it? From RARE to EVERYWHERE in a a decade and a half. That doesn't happen often! I am so glad that this crisis is finally being openly discussed. We have spoken of it often over the years as the numbers were rising, and the CDC was still counting. I am so proud to be surrounded by parents, siblings, legislators, providers, physicians,friends, and self-advocates joining in the discussion BEFORE the inevitable happens.

I remember back when Austin was first diagnosed. I was talking with a friend that has a son on the Spectrum who is now 18. He was about Austin's age at the time. She kept telling me about the crisis coming as these children were growing up. I remember telling her, I had to deal with the crisis that was happening right now...no early intervention unless you could pay out of pocket, the lack of awareness, the lack of a sense of urgency as the numbers continued to rise. No, I had plenty of time to think about Austin as an adult, I had to survive the here and now. My best friend, Tammie and I used to talk about it casually, joking in the manner that only we can. We each had the same plan for the boys in adulthood. WE COULDN'T DIE! We decided to revisit that plan when we had time. How naive...

Time...was far more fleeting than we knew. The years flew by as we did battle. We worked to grow a walk and increase awareness, along with friends from everywhere across the country. We worked hard with our Autism Community here in Florida to right a horrible wrong, and pass an insurance mandate to get some kids that Intensive Early Intervention while they were young. The whole time we thought it was too late for our boys, but we had to do something. As most people know from reading here, it is NEVER TOO LATE. Austin is doing great, with the interventions he SHOULD have had when he was little. He isn't little anymore, he is 5 feet tall and weighs 134 pounds, and he isn't 11 yet! We deal with horrible behavior, but he is learning, he is progressing, and we have great hopes and dreams for him again.The people in our district are buzzing about his miraculous progress!

Hopefully, the groundwork being laid today in DC and across the country will move fast enough. Hopefully the legislators that were asked by their constituents to attend this Town Hall meeting to learn more about the coming crisis listened. If all falls into place as it should, the supports that Austin and Matthew will need will be there in time. At the time when we can no longer pretend that "I CAN'T DIE" is actually a plan.

You see, Austin's BCBA believes strongly that he will always need his Behavior Assistant because of the severity of behaviors he learned to communicate with as he went untreated. He LEARNED that if I want the teacher and I hit myself, she comes. If she doesn't come for that, I can hit the kid next to me and she will come. If I don't want to work, I can put my head through a wall or hit my brother, and mom will put me in timeout and give me time to do what I want, and IF I am really lucky, she will be so distracted by life as a mom of 5, working and caring for all of us, she may just completely forget to come back and make me do it, and I can AVOID the whole thing. He may not have been telling us with words, but he was training us with his actions. When we would work harder at school, he would push harder at home. When we would work harder at home, his plan fell apart at school. We are now using a wrap around ABA approach, and he is doing wonderful!

The exciting part of his progress is that his BCBA sees this duo (Austin and his Behavior Assistant) going to Austin's college classes, learning about what HE CHOOSES to learn about, moving on toward the career HE CHOOSES, and eventually sitting in HIS OFFICE as he works and thrives as a contributing member of society.

I know this dream puts a great deal of pressure on the participants today. GOOD. The CDC numbers that were recently announced count children who were born through 1996. Austin was born in 1999, he still has not been included!  THEY ARE COMING! I truly believe we CAN be ready to help them all. The work  and urgency needs to begin TODAY!

We had a Bad Day...

Well, it happened, we all knew it would eventually, just a matter of when…
Mommy had a MELTDOWN! We’re not talking a little pity party, a few tears, getting snippy with one of the “other world”, you know the one, the one where Autism is that thing that you hear somebody else’s kid has, we are talking a “full blown Mount Vesuvius, someone get a straight jacket for this lady” meltdown! Seriously, I may never be able to go into our local Walmart again.
It all started because I had to run to the store for last minute supplies for my daughter’s 18th birthday (which of course was THAT day). I have been putting off getting new shoes for Austin for a LONG, LONG time. He really hates getting new shoes. He doesn’t understand the whole “try these on” thing. I had our Behavior Assistant and our Respite helper with me (who also happens to be a Behavior Assistant), so if we were going to ever have THE opportunity, this was it.
We prepared him all morning, telling him we were going for new shoes. We used our very best Social Stories, we were ready. We took his Thomas the Tank Engine Sticker books with us so that he would be happy in the car on the way there. We were all feeling very proud of ourselves that we had done everything we could to make this go smooth as silk. We forgot one small detail, just when you think you have it all figured out, Austin just may throw a curve ball.
Miss Nicole took him to the toy aisle (one of his favorite places) while I got the birthday card that I had forgotten to buy. My daughter Alyssa and I were picking out the card, Miss Nicole and Miss Brynn had Austin. Alyssa and I found our card and went to the shoe department. That was when we heard him. I looked down the aisle and there is Austin practically dragging these two amazing girls toward me, screaming bloody murder. Ugh, here we go.
We took him into the shoe aisle (which cleared quickly, other than the gawkers). Nicole sat with Austin, calming him while Brynn, Alyssa and I found every pair of shoes that we thought might fit him. Ok, he was calmer, took off his shoes, and tried the first pair…erg…too small. He yelled while we took them off, got louder when we tried the next one. Hurray, that one fit. We bent to take it off, he started yelling, I turned into the worst Behavior Mom in the world and told Nicole, “Put the other one on him, and he will wear them out! Let’s get out of here!”
He calmed down while she put the other shoe on and really seemed much better. The crowd had dispersed at this point, so I made yet another bad decision, I forgot about a possible after-shock. I told Nicole I would meet her in the front of the store, I just wanted to run to the pharmacy for elastic laces. I know, what was I thinking? I was halfway to the pharmacy when I heard him. There was no mistaking it, round two and three were hitting at the same time. I literally ran back to find them coming around the corner, Austin slamming his head into everything (pillars, Nicole, the floor), and screaming his head off. I threw my purchases into Alyssa and Brynn’s arms. Nicole and I dragged him to the front. Each aisle we passed there was bare minimum of two people standing, staring, and some worse yet making nasty comments. Not fun, but nothing that hasn’t happened many times over the years. I usually use the opportunity to educate people, and I did, for the first few aisles of people, by saying, “He has Autism, we are handling it” as we walked by.
Then came the final straw…I looked straight ahead at the Walmart employee who was standing there just staring at us. No offer of help, no helping me ring up purchases, nothing, Just a whole store staring at a family in the middle of a huge crisis, and not one person stepping forward to help.
I snapped! I screamed at the top of my lungs,”It’s called Autism, it’s an epidemic, and sometimes it SUCKS! Now she is taking him outside with his new shoes, I am going to pay for them, and then we are out of here. ANY QUESTIONS?”
Not the best approach, I absolutely agree, however I am sure that at least a few homes in my town were discussing Autism over the dinner table that night. I guess we did raise some awareness after all.

The Other Side of Presuming Intellect... or Is Intellect Enough if the Supports Aren't in Place?

"Great Austin... We always saw the great possibilities you had...even when those closest to you did not. Keep up the good work." This was a comment written after my last post. At first, I got angry, as I may or may not have taken it in exactly the way it was written. You see "those closest" to Austin, in my mind would be his family (his father, his siblings, and of course me, his warrior mom). I intentionally avoided my Facebook page for fear of a "knee-jerk" response. I'm glad I waited. This post is instead my much more thought out response to this hopefully well-meaning praise of Austin, not a dig at his people "closest to him". I am using this opportunity to educate a bit, although, there are not many of my peers (other parents dealing with Autism and IEP's, and school districts, and insurance companies) that won't understand what I am about to share. I hope I don't bore you too much with what you already know. You see, ever since Austin was diagnosed almost 8 years ago, I have been doing battle, so to speak. IEP's consisted of me begging and pleading for Augmentative Communication, ABA, and many other things. Pushing to have the school system admit that YES, Austin was in there. I was constantly denied the Augmentative Communication, because "he wouldn't understand it" according to their testing. 7 long years of me shouting and screaming that he was in there, and he was counting on us to get him out. 50 hours of preparation before every IEP. Charting data, trying to find correlations, trying to find the key to help him to be able to move on. His behavior kept escalating, and his progress was slow at best. At the very beginning, I had a friend also with a child with Autism. She fought for full inclusion for her son. She did everything she could. Her son started Kindergarten in a Regular Ed class. The proper supports weren't in place. He didn't have an aide to redirect him. He didn't have a reliable way to communicate. He didn't have the full-time attention of a Behavior Therapist at his school. His behavior escalated. He started affecting the learning of the children around him. He would even occasionally hurt those around him. This child, and his parents were VILIFIED in the newspapers by the other parents for exposing their children to his behavior, RUN out of the school. I hope she is doing well, you see, they don't try to fit in anymore. I swore that would never happen to my son, or my family. IF Austin was ever to be with Regular Ed children, he WOULD have every support he needed to protect him and those around him. And YES, as implied in this "lovely, encouraging" note from a school employee, I REFUSED to move Austin before he had a Dynavox. I REFUSED to move him before he had a 1:1 aide to redirect him. I REFUSED to move him before he had a complete Sensory Diet integrated into his schedule. I REFUSED to move him until I met this beautiful, sweet Angel who was to be his new teacher. WE as an IEP team put our heads together and came up with options. We brought in his outside Behavior Analyst, Miss Lauren, who had done more with his behavior in two months than the "experts" at his Center School did in 7 years. Don't get me wrong he was safe and happy with his lovely amazing teacher at the Center School. SHE never doubted his possibilities, although she knew his behavior would be a hurdle. SHE listened to what I as his mother felt he needed. However, this placement was not able to meet his academic needs. I was looking at the big picture and was forced to choose safety over academics. The moral of all of this, basically to me is two-fold: 1. PRESUME INTELLECT, and provide the supports and services to effectively integrate our children into the Regular Ed world. In case you haven't heard, the numbers have changed yet again, and with 1 in 91 children, 1 in 58 boys being diagnosed with Autism, you are running out of places to hide them away. Without the proper supports and services in place, the nasty little secret of how little "we" as a society support and protect these kids so that they can become productive, wonderful members of our society will be out there for the whole world to see. 2. "Experts", unless you live our lives, and make these incredibly hard, heart wrenching decisions for your own children, DON'T JUDGE THOSE OF US WHO DO IT DAILY! You can't possibly understand until you force your very bright son to glue glitter on the letter G for 7 long years, just to keep him safe from ignorant people, and to keep others safe from the behaviors he has learned because the proper supports and services just weren't provided! I held up my end of the bargain. I participated in ALL of his IEP's, unfortunately, the rulebook kept changing! Let me leave you with one of my favorite quotes. It is from many people, including Hubert Humphrey, so I am paraphrasing: "...the true test of a society is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped.” Hmmm, tell me, how do we score on this test? The schools and Legislators are laser focused on the results of the FCAT, maybe this test should be included in No Child Left Behind too!

ABOVE ALL, PRESUME INTELLECT!

Here we go again! Austin has found yet another way to remind the "experts" that he has been in there the whole time. First it was with the Dynavox, and telling his teacher "Shut up, I don't like your singing!". And now, another "In Your Face" moment from my son. (I have no idea where he gets his attitude, but I like his style!) This is an incredibly proud Mommy moment, so please bear with me.

As a recap, the "tests by the experts" showed Austin had an IQ of 53 on paper. He took an Alternate Assessment test last year that placed him at the beginning of First Grade with his skills. Not bad, huh, they were actually VERY PROUD! Austin had been doing it their way for over 7 years in the school district. I take part of the blame, because I was scared to death to move him to a "typical" school because his behavior had escalated, and I try very hard to protect everyone around him, and not let his "rights" outweigh the rights of the children in his class to be safe should he have an outburst. I honestly felt that there were no where near enough Behavior Supports at any school but the most Seclusive school in our district, so he stayed there. He was bored out of his mind, gluing glitter on the letter G, 7 long years on his alphabet. Only because we can't individualize the whole day to HIS IEP goals, yet he was FAR ahead of the others in his class with goals.

Fast forward, we put tons of supports in place at school and he also started an intensive ABA program (you can see more about that in my previous blogs). To be honest, Austin is getting basically everything the "experts" recommended when he was 30 months and diagnosed with Autism, but they ruled out good insurance or parents with money, so he didn't get it!

The picture I have included is of MY SON'S very first report card this year. He has never gotten "actual grades". Austin is on A-B Honor Roll. Of course it included the caveat that "this is not on Grade level, these are grades based on his goals from his IEP, and progress toward those goals". The part they leave out is that he is doing skills in 2-3 grade academics. He is in the highest group for all Academic subjects.

The girls working here with him at home can't keep up with books and worksheets, as he blows through skill after skill.

Shocking isn't it? I am listening to the IACC meeting (Interagency Autism Coordinating Committee) on the phone as I write this. There are Teens and adults who are on the spectrum that can talk about how far they have come because they got what they needed. I have to admit, today is the first time that I have heard higher functioning individuals speak without thinking...if only...

Austin just may show the experts some day. The window of opportunity does not close. Austin is proof of that. HE THREW THE DOOR WIDE OPEN! He will be heard!

We have a question here at our house...DR. INSEL and IACC- DO YOU HEAR US NOW???

Miracles DO happen!

I know it has been far too long since I have written anything. I am sorry for that, but very happy to write this and update everyone on Austin's progress. It has had its ups and downs. This picture is of the Dynavox that Austin slammed into his head after about a week of therapy. It is VERY tough in the beginning, but I am SO GLAD we didn't give up!

I have to say it...ABA WORKS!!! As you may recall, we started on July 23 with a full-time ABA program in our home for him. We have three amazing angels (Miss Brynn, Miss Mary, and Miss Nicole) who are working with him. They come after school for four hours a day and eight hours a day on weekends and non-school days.

His plan is overseen by Miss Lauren, an amazing BCBA from Eden Florida. Now, remember, Austin has been in a Center School for Developmentally Disabled children for years. He has gone to school for seven years. I was told his IQ was 53 on paper, I stress ON PAPER! At the end of last year, his testing showed that his academics were at the beginning of first grade. My heart sank hearing that, because this was where 7 years doing it the school districts way had gotten him.

As I talked about in my previous posts, we really changed things for him this year. The ABA program at home has helped tremendously. By the first day of school, Austin had mastered almost all of the goals that we had set in May.

Austin is in the top academic groups in every subject in his class. His behaviors are still a challenge, but he is LOVING the academic challenge that he is getting now.

Austin brings me books, and HE reads them to ME! He won the Math Award for his class. He is proud of showing people his papers from school! He is doing double digit addition and subtraction. I could go on and on, but my point here is that I am talking about a child who was gluing glitter on the letter G, at this time last year!

Our children learn differently. They act differently. They communicate differently. None of this says that they CAN'T LEARN! It is my hope that Austin will pave the way to show exactly what happens when you PRESUME INTELLECT with children. The limitations on their learning may be limitations that are placed on them, not limitations that truly exist.

In passing bills in various states about Autism Insurance Reform, we come against people talking about the Window of Opportunity. Legislators want to set a time, a line in the sand, that says that if our children haven't learned at that point, then they won't. In some states, the law says services end at age 6, 8, or 10. My question is, what if we believed in that? What if we didn't try, because he was almost 10, so what was the point?

Austin has made up at least one year of schooling in less than 3 months. I can't keep up with buying school workbooks for him. For the first time, I am wondering about getting my son ready for the state tests in the future. I never thought I would do that. We still have a long way to go. He still is aggressive and self injurious, frequently. We can breathe now, it has been a very long time since we could.

The moral of this story: Don't necessarily believe everything that the "experts" say your child can accomplish. Believe in your Mommy's intuition, believe in your child, and Miracles just MAY HAPPEN!