There is so much to update about that I have a feeling that this may be a very long blog. First, we had our very first fundraiser as a foundation. Our first 5K was held this past weekend at the Lowell Elks. I have one word to describe it.......WOW! So many people came out to support us by running, walking, donating raffle items, donating water and bananas, making generous donations, purchasing raffle tickets, and volunteering their time. It was a successful and memorable first event. We will be posting on the foundation's website how the funds will be allocated. One thing I encountered while beginning this foundation is generosity. The generosity of people has been overwhelming. Phil and I have been in awe of how kind and generous people have been. It is making us strive to be better people. The week prior to the 5K, the school that Gavin attends and I teach at, held its first annual Autism Awareness Week. I have one word to describe this week leading up to the 5K......AMAZING! This was able to happen due to the support of the Principal, Matt Stahl, Assistant Principal, Kim Clements, the teachers, and our BCBA, Christine. I sat down with the two PDD teachers, Melissa and Lynne, and planned and organized various activities that the teachers could complete with their students. The activities helped to spread awareness by giving the students a glimpse into an autistic child's mind. Some of the activities included having the students wear safety goggles covered in Vaseline and being asked to write their name or a sentence. Participating in a read aloud which incorporated children's story books about autism, stringing beads while wearing gardening gloves, and participating in relay races while wearing binoculars backwards. The final day consisted of all staff and students wearing blue. Many teachers had autism shirts on that read "Autism, Support, Educate, Advocate" Thank you to the assistant principal, Kim, and several teachers for creating the shirts. We also had an all school assembly where the entire school watched a kid friendly video of my oldest son, William, talking about what he knows about autism. We then had a question and answer session. The students had some great questions. William and Landon stood in front of the entire school and helped me answer the questions. What an amazing thing that the Pawtucketville Memorial Elementary School did! Thank you to all the staff and students!! This autism journey is becoming more bearable by having such supportive people behind us to encourage us, motivate us, and lift us up when we are feeling down. Thank you also to Kathy Marandola. Kathy is a colleague of mine who was also the 5K race director. Our first annual 5K was flawless! She made sure that every detail was covered. A lot of work went into planning this event, and I will be forever grateful to Kathy for volunteering her time and talents. We did have one glitch. My dog got sprayed by a skunk the Wednesday morning before the race. It wouldn't have been a big deal, however, we had just picked up 240 race shirts. The race shirts were boxed in the living room. My dog took a full face spray. Ran into the house soaking wet and reeking of skunk. She proceeded to run through the entire house. Phil and I attempted to get the 5K shirts out as soon as possible. However, once I delivered them to school, Kathy opened the boxes and found a very strong skunk odor. Thank goodness we were able to air the shirts out. Thank you to the Pawtucketville staff who willingly took the more smelly shirts for their own. Again, grateful for their flexibility and understanding.
We are currently facing a new behavior hurdle at home with Gavin. He likes to script that he is leaving. He will take a chair and slide it up to where the keys are hanging. Gavin will then climb up onto the chair and take a set of keys. His next step will be to put on a pair of shoes (usually Landon's crocks), and then unlock the door and proceed to walk out. He has gone so far as to walk down the front stairs and the walkway to the driveway. We have to try to redirect Gavin so as to not call any attention to his behavior. The more attention he gets for negative behavior, the more he does it. Due to this new behavior hurdle we also have to make sure he is supervised 24:7. So, we have made a game into it. A good old game of tag. We work as a team. Whom ever gets tagged, it is their shift to watch Gavin. William and Landon are really good about taking their watch shift carefully. This really helps if I have cleaning to do, beds to strip and make, or just to even take a shower. Another important thing I have learned on this journey is how very important team work is. Phil and I couldn't do it alone. We appreciate all the support, and help we get. Gavin is also having some major meltdowns at home. He becomes easily frustrated, and is not able to communicate his frustration. I have been showing him pictures of feeling cards. I often take out the mad one and reinforce him to say, "I am mad!" I noticed he has also started banging his head and biting things out of frustration. More new behavior hurdles. I am guessing that he has been out of school for the week, and this does throw him off. The important thing is reminding his siblings to ignore, ignore, ignore. Which is difficult to do sometimes.
I was reflecting this week how I remember when each of my boys went through the "toddler stage" where they were into everything. How we had to toddler proof the house and watch them 24:7 for fear of them getting hurt. I was thinking about how exhausted I was during that toddler stage, and was a little more relaxed when they outgrew it. Don't get me wrong, I do miss their different toddler stages. However, I was thinking this week that Gavin may never outgrow his toddler stage. Instead of it being called a toddler stage it is now called Autism. I have come to the realization that he may need to be supervised 24:7, that I will always be exhausted, and that this is my reality now.
Gavin had his six month check up with his Developmental Pediatrician, Dr. Rappaport at Children's Hospital. We haven't seen Dr. Rappaport since August. Gavin was just beginning school then. We sat in traffic for an hour and forty minutes yesterday to get there, however, Phil and I commented how it is always worth it. We adore his Developmental Pedi. He is great with Gavin. Asks us a lot of questions and is very observant of our boy. He was impressed that Gavin is already fully potty trained even at night. He inquired as to how we accomplished this. We told him that consistency between school and home were important. He didn't like being wet, so that helped also. Dr. Rappaport is recommending more ABA (Applied Behavior Analysis) therapy for home. Especially during the summer months. Phil and I both agree that this would be crucial to his development. We are also looking into getting him additional speech and language and occupational therapy during the summer months. This will help him continue to make progress. Dr. Rappaport asked us about his stereotypical behaviors. I looked at him and began to rattle them off one after another (his repetitive behaviors, scripting, flapping, stimming). During the car ride home I was thinking how far we have come. This is what I realized. I am no longer in the denial stage of my son's autism. I am now in the acceptance stage. Believe me, I still grieve, and I am still anxious about what the future holds. But I have come to accept Autism. Some days I embrace it, some days I curse it, some days I want it. I want to carry the burden for my son. I want him to have a typically developing life. What I would give or do to take the burden from him.
The night before the appt, I slept horribly. I awoke in the middle of the night with what I thought was heartburn. However, it was anxiety. The anxiety hit me out of no where and led to a panic attack. I blamed it on lack of sleep. I realized later after his appointment that is was due to his upcoming appointment. I was extremely anxious about it. However, I could not pinpoint why? Crawling into bed last night is when I realized it. I took another step closer to meeting autism face to face. I knew Dr. Rappaport was not going to tell me that my son is cured. My son will never be cured. He is autistic. He has autism. I have stepped into a world of autism reality. Where ABA, scripting, flapping, stimming, speech, OT, and PECS are all familiar words in my house, where my son will never outgrow his Autism, where my entire family is working hard as a team to unlock his mind. However, my world of autism reality also consists of generosity, kindness, understanding, encouragement, support, and acceptance. My son may have autism, but my family has been blessed. We will learn lessons about life, we will face mountains together, and we will work as a team.
Lastly, I want to once again say thank you. Thank you to everyone who came out to support the foundation. Thank you to all the runners, walkers, people who donated, people who sent us a message saying they were thinking of us. Thank you to my colleagues at the Pawtucketville Memorial Elementary School. Thank you to my colleagues at the Reilly Elementary School. You guys have given me a gift of support and encouragement. These gifts are irreplaceable. Thank you to my friends. Thank you to my family. Team work and love keep us strong. Also, thank you to Mr. Durkin. Your heartfelt letter and Sacred Heart Badge are priceless. I read your letter once a day, and carry the Badge with me always. As you said in your letter that a priest once told you that God only gives those crosses that have the backs to carry it. I am blessed that my family, friends, and colleagues give me the strength to carry the heavy load. Some days when I am feeling weak, I know I can count on one of them to carry the cross for a little while until I get my bearings.
Still searching for that key,
Paula
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