Thank you Jen and Mark!
This is the write up that was in the Els For Autism Golf Challenge Grand Finale Program.
Unfortunately Jen wasn't able to attend the Finale because she got sick:( Mark went solo and said it was an amazing event..."over the top" were his exact words. This event raised 2.2 MILLION dollars!!!! . Thanks to Jen for taking on the challenge anddoing a fantastic job!!! Mark was very inspired by the stories shared by other families. It was such a rewarding and informative experience....Thank you to all of you that supported this cause. Thanks to the Els for sharing their Journey and for making a difference in the lives of other families, like ours:)
This week was Darren's IEP, which is short for an Individualized Education Plan. I have come to appreciate these meetings since I have been to many over the past 5+ years. It is a time to celebrate successes from the past year and create the new plans for the upcoming year. Well, that's what they are NOW, but back in the day, it wasn't quite like that. During the meeting I couldn't help but to reflect back on the Journey. The path has been bumpy. Darren has struggled. We have struggled....teachers have earned their stripes and dealt with behaviors from Darren that didn't make me proud. Teachers have been unsure how to handle him at times. Many emails were written by me with hopes of explaining all that I knew about Darren...what worked/what didn't...what was acceptable/what wasn't. Darren has had liquid stitches, bruises, and has bruised others at times....like I said, it's been bumpy.
But, there is light.
This has been the best year thus far. A collaborative effort on many levels. He is at an amazing school. I have said that before, but I will say it again now...I love this school. I have never felt more accepted...and I know that Darren feels the same way.
I listened to professionals around me share stories and target goals that showed me that they "get" Darren. I think the major difference is...I listened. Maybe I have grown just as much as Darren. I have let go enough to listen. As a teacher, I see the strengths and weaknesses in my own students and try desperately to figure "it" out. I know his teachers are doing the same. I see it daily and I am happy.
I didn't know what it would it be like to work at the same school that Darren attended. I was worried that it might mess him up a little. I was content in knowing that he wasn't far away and hopeful that he would feel the same. So far...it is all working out just fine. When I see him outside on the playground or in the hallway...he gives me a look. He acknowledges me...but he doesn't really want me to embarrass him. He's very professional...I'm at school, you're at work...period.
The medicine continues to be a blessing. It is not a miracle pill though. Darren is still Darren. I had to remind myself of this a couple of weeks ago. This medicine is helping tremendously but he still has autism...and he still has behaviors. But this week I was reminded that the behaviors aren't NEARLY what they used to be. For example, he used to spit, scratch, and run away or climb furniture at school. At home he peed on mirrors, ate toothpaste or soap, and could get aggressive. School hasn't seen any spitting. He had a couple small incidents of scratching but immediately felt remorseful and there has been no attempts at climbing or running away. I can't tell you how HUGE that is...Thank You God.
I am counting my blessings...over and over again. This week I was reminded, I can't believe that I forgot, that we have come so far. There are still goals to reach, unchartered territory ahead....but we have survived and conquered many hurdles.
Today Trevor had to write about why we moved to Florida. We had a great conversation about our Journey. It was wonderful to hear it from his perspective. He has traveled so far developmentally because of Darren. I think he sensitive to others and very kind hearted. When I asked Trevor what it was like to have an Autistic brother, he answered, "It can be difficult." I agreed, it can be difficult. But whether he truly understands the impact that it has already had on him...I am not quite sure. Trevor is a pretty great kid. He tries so darn hard at school. He was DEVASTATED when he got one wrong on his spelling pre-test at school last week. It was a pre-test...and it was only one wrong. I was thrilled!!!! He was not at all satisfied. We all know he does NOT take after me in this category. Sad, but true. Trevor is very in tune with the emotions surrounding him. He, like I, has had to train himself to prepare for the worst because with Darren you just never know sometimes. When I ask Trevor who is best friend is at school he answers, "Everyone". That goes back to our motto...If you can deal with Darren, you can deal with anyone. We are so proud of you Trevor!
Darren has been always loved music, but lately has been singing! For a kid that struggled so much to talk...it is wonderful hearing him sing. This video was taken by him...He likes to hold my iPad over his iPad as he is watching youtube and then he videos himself singing his favorite songs....It's like, Darren Cam! Ha
Next up: ABC's
This was today at the beach! Trevor initiated it, but Darren was really enjoying it.
These days, I have High Hopes. We completed Week Three with no major issues....in fact, Darren continues to excel and is becoming a role model in his class. For the first time he is using his words to tell his friends how he feels. If others are too loud...he is going up to them and saying so. If another kid grabs his chips at lunch..he tells them "stop that", and when behaviors are increasing in the class he is maintaining his demeanor and continues to do what he is supposed to be doing or he is asking for an appropriate alternative (headphones,break,etc). This is a first and this is a very positive sign. It is almost surreal for me. I have had this vision of Darren and now I am starting to see it evolve. I listened to people tell me that he had no imitation skills, that he was nonverbal, that there was nothing else they could do to help him with his speech because he had such extreme behaviors, that he functioned on a schedule and was not attached to people. I say...Look at him now. He has proven them all wrong. He has risen above it all. I can't help but to be extremely proud of him these days. I am internally scared to death as well....what if this ends? What if something changes? The medicine is helping him achieve new goals...which means I can dream new dreams....even bigger than before. I never want him to falter again. But, I know every parent feels that way. We all want the best for our kids. Darren has just had such a tough path thus far....I pray for calmer waters from now on.
Speaking of Calm Waters...we visited the Gulf coast this past weekend. SO beautiful.
Here's another great picture of the Gulf.
On our way home we saw a full rainbow. Once again a sign....no doubt.
Trevor had a great week. Fall Diagnostic Testing has begun. He is very serious about school. Went to Back to School night and was very pleased with his classroom and teacher. Hope everyone is having a good start to their school year as well.
Much Love To All.
Saturday, August 25, 2012
A New Chapter
Hard to believe that we are back to school! I am happy to report that the boys successfully started the 3rd grade and that each made a good first impression. Trevor was very happy to get back to school and was super excited about seeing his friends. I don't ever remember being happy about going back to school...even at his age. Mark says that he was the same...so we are both thrilled about Trevor's love of school. Third grade is a big year and speaking of big...this school is very big! It hold grades 3-5 and consists of 950 students. Teachers (my former co-workers) have been very kind to Trevor at school. I have no doubt that Trevor will continue to do very well. Trevor decided not to play Fall Travel baseball...he is looking forward to playing basketball in the winter. Although, I am not sure where they play basketball around here since none of the elementary schools have gymnasiums. Guess we will find out!
Darren started back as well and is having his best start ever. A new chapter has begun. We have entered the world of medication. I never thought that I would be writing about this. Mark and I up until this point saw no need for medicating Darren. He was healthy, happy, and doing the best that he could under all circumstances...but then the rainbow appeared. A couple of weeks ago we made an appointment at the Dan Marino Outpatient Center in Weston, Fl which was about an hour South from us. Of course, the draw was in the fact that Dan Marino also has a son with autism and has made create efforts to provide services to help other families with specials needs children. Click on the link for more information:
I scheduled an appointment with a Neurologist (who specializes in Autism). I am not sure I knew what I was going there for. I have taken Darren to a Neurologist before...but was honestly not impressed with anything they had to say. Which is surprising to me because Autism is all about the brain....
Anyways...we all went together. All were curious and anxious to see the facility etc. We were not disappointed. The whole experience was a very positive one. We first met with a nurse practitioner that was very kind and did a wonderful job of listening as we explained "Darren" to her. We gave her a much information as possible in a relatively short period of time. I felt very comfortable explaining all of the unique aspects of Darren. She shared information as well about testing options including an EEG, genetic testing, and thyroid testing that would provide a baseline of information for us. She asked about his school placement and we explained that Darren was in an accepting and loving environment....a school hand picked...literally. So after all of this was said....there was a moment that I felt myself asking "why are we here?" The answer was this: I have always wondered if Darren could just come down a notch...could/would he function better at school and at home. I didn't want a cure...I just want to provide him with all the tools to be the best Darren that he can be. The nurse left the room and returned with the Neurologist. He immediately interacted with Darren and took advantage of every moment to watch him carefully. I was impressed and liked him right away. The nurse practitioner had done a thorough job of filling him in and we briefly continued our discussion. The most enlightening part was when I was explaining Darren's Visual Stims:....opening and closing doors, obsession with lines, spinning, etc. He listened and asked me this question...."Do you really think he WANTS to open and close the doors a million times a day?" I think my thoughts froze at that moment...it was an "a-ha" moment for sure. I honestly have never thought of it like that. I really felt like he "saw" Darren. He targeted his issues quickly and without judgement. He then recommended an ADHD medication called intuniv. It is a non-stimulant, time release medication that is given once a day to help with ADHD. He recommended this due to Darren's non-stop movement and impulsive behaviors. He felt that it was a good choice for him and simply stated "either it will work or it won't". He provided us with a sample started kit and we left there feeling good about all that we had heard and shared. After a week of avoidance....Mark and I finally talked and texted (haha) each other about this issue. I think it kinda made sense to both of us and felt that maybe it was time to try something. We had been seeing an increase in his anxiety in the car....occasional aggressive outbursts....to summarize nicely...Darren can be a handful. So after what seemed like hours of googling intuniv....we agreed to try. It has almost been two weeks and I am excited to report that we are loving the results. Darren is calmer and less impulsive. He no longer is freaking out in the car and most importantly he had an amazing week at school. The principal even said..."We should name Darren the star student of Renaissance". It seems to me that the medicine has "brought him down a notch'" and for the first time Darren is seeing the world straight on...no longer in snapshots. He is still in motion...but walking not bopping. He is more in the moment and not as controlled by the fast moving world around him. He is still Darren....but we are seeing some really positive changes. Please pray that these continue. This could be a big turn for Darren. For some reason I have always felt that I would have a good sense of Darren's long term abilities by the age of 10. Something tells me this could have a great impact on that vision. I started my year as well. I absolutely love being at RLC. Darren and I ride to school together and he hangs out in my room until school starts (Mark drives Trevor to school). I have 8 students and 3 assistants. I am putting a lot of pressure on my self to provide a learning environment that I know that I would want for my child. I am energized here...I love working with these kids and feel that I have so much to learn and lots of opportunities to creatively teach these kids functional life skills. Mark continues to do well at Ruby Tuesdays...SO all are happy in Florida:) Much love to all.
This summer has been action packed. Our trip to NC was our first adventure. I learned a lot about Darren during that visit. I used that time to get back in touch with Darren's academics and behaviors. It's hard to explain, but if I'm not totally in tune with him...we both lose our balance. He acts out more...I lose the vision...and we just don't function as well. Jamie once called us "ET and Elliot". I have to agree that our relationship is like that. Who's ET? and Who's Elliot? It depends on the situation:) In NC Darren and I reconnected. The first day, as is typical...he pushed the limits. It usually takes a couple of time outs and some consistency to get him back on track. But he can escalate quickly. He gets so wound up that it is hard for him to regulate his emotions. So I have to try very hard not to get too emotional when dealing with him. At home I can ignore him or put him in his room and let him have his fit and recover from there...but at someone else's house...it isn't that easy. So after many attempts at time out at my parents...he started hitting me..spitting...scratching...the same old M.O. It was like he knew that I couldn't ignore him here AND like I stated....we were already out of sync. It is these moments that I hate the most. The power struggles. But it is at these moments that I have to step up and take control. Ever watch The Dog Whisperer??? When the angry dog finally surrenders and becomes submissive...it's kinda like that. There is a switch...where he goes from angry/silly boy to sorrowful/ apologetic child. It's not fun...but every so often...it happens. He tested me a couple of times there but I was also doing some academics with him...he doesn't like it when his worlds collide. And then...we are back on track. ET and Elliot.
Academics: I was actually impressed with his progress. His reading is coming along...slowly but surely. He struggles with word recall. Sometimes it looks like he is scrolling through his word rolladex and unfortunally the rolladex is empty. With the words he just couldn't remember...I started incorporating sign language to hopefully serve as an independent prompt. If you look back at the NC videos you can see the little spark that goes off as he uses it...it helped him remember then word...and he smiles. I have shared this with school and they are on board with continuing this. Hey..."whatever works" is my philosophy. We also hope to use the iPad more at school to expand his communication skills. The gap between his receptive and expressive language is still his biggest hurdle. I have great hope that this year we can close that gap a little. He loves his iPad. He watches educational videos on youtube a lot! The funny thing is that we have no idea how he finds the things that he does. For example...he will watch Head Shoulder Knees and Toes...and then he will listen to it in Japanese....so funny.
Behaviors: All in all. He has come such a long way. I just really wish he could verbally express his emotions. I believe that would help him greatly. He still gives the warning call: "I want to scream" or "I'm crying". If I ask him why..it's usually..."I'm sad" or simply "because..I'm crying". I am happy that he is trying to express himself...it's a positive start.
Summer is also a time for the boys to reconnect. There are so lucky to have each other. They both are giving such lifelong
gifts to each other...and they don't even know it yet:)
Trevor has been enjoying his summer. Please check out the new Batman video below. Trevor continues to be a fun loving kid. We have decided not to partake in travel baseball this fall. Not sure we are ready for that commitment. Trevor has expressed interested in more golf and/or tennis lessons and he really wants to play basketball again...then baseball in the Spring. Hard to believe that they will be going into 3rd grade. School starts August 20! Not that far off.
We hope that everyone is enjoying their summer.
GO USA!!!
