Dear Autism,
Seeing this is Autism Awareness Day, a day that we shine a light on you, a day that we light you up blue, I have decided to take a moment to reflect upon you. You entered my life on June 18, 2010. My son was just about to turn two. Some days it feels like yesterday when I faced you like a deer in head lights. Other days it feels like years ago. I remember sitting in a small room, holding a thirteen page report in one hand, and Phil's hand in the other. I remember the doctors looking at us with such heartwarming smiles. I was sure that they would tell us that Gavin had a communication delay. I was sure that they would even tell me to stop treating him like the baby of the family, and he would be just fine. I was so sure of it, that when the words, "Gavin is autistic" was said, it took a moment to catch my bearings. You see, you stopped my world on June 18, 2010. The world stopped for that moment. I felt like I couldn't breathe. I began tapping my foot and held Phil's hand even harder. I looked at the doctors and asked them to repeat themselves. I asked them if they were sure. The doctors replied, "You're son is autistic." I asked them if he had PDD? Again, they replied, "Gavin has autism." I looked down at the report I was holding. I quickly scanned it. Clearly it couldn't be in writing. There it was, "Gavin is autistic." At that moment my world changed. All my hopes and dreams for my third son, my youngest, my Gavin, were shattered. The tears came, and they didn't stop. The doctor handed me a box of tissues. The tears flowed so freely that I felt my body wanting to convulse. My brain shut off. Phil did all of the questioning. I didn't hear any words after that. I just sat, wiped my tears, and attempted to stop the convulsions. The doctor finally walked us to the check out area. She asked the social worked to get us their "autism packet". I stood silently. I remember Phil did all the talking, I just stood there. The social worker handed us a large packet and told us that she would be in touch. I just stood there. I did not want to leave. I wanted to stay there forever.
I remember the car ride home was very quiet. My tears continued to flow, and my body continued to convulse. How would I tell his siblings? How would I explain autism to them? Would my son ever talk? What if I die never hearing his voice? How will I teach him? Why my son? Why me? Why us? I remember asking Phil through tears what was going to happen to our boy. How will we do this? Phil squeezed my hand tighter and told me that we will be ok. Gavin will be ok. We will do what ever it takes for all our kids. Autism will not defeat us. It will encourage us.
I called my sister on the way home. I told her the news. The tears would not stop. She asked what she could do. I asked her to please call the rest of the family. I just couldn't do it. I remember asking her to tell them to please not give advice. All we needed was love and support. Just love and support is all we need.
Upon returning home, we gathered all the kids into the boys bedroom. We sat together and held hands. The boys asked me why I had been crying. My response was, "Gavin has autism." They were full of questions but the one that I clearly remember is what William said. "Is that why Gavin doesn't talk?" My response was, "Yes, William. That is why, and our job now is to teach him how to talk. No matter what it takes, we will get him to talk." I then told the boys that God doesn't give just anyone an autistic sibling. He entrusted him to you. It is a big job, and he knew you were special enough to do it.
I grieved for months. The grief would some days hit me like a freight train. I hid my tears well, I hid my fears well, I grieved in silence. I remember the grief was so painful some days that I would have to tell myself to breathe so that I wouldn't hyperventilate. Autism, all your information was so overwhelming. I contacted my friend, Christine. She was a godsend. She informed me of what places to contact, and where to begin. Christine, you helped me take that first step to meet autism face to face. For that I will be forever grateful.
I would get up with Gavin each morning and leave our Golden Retriever, Lillie, outside. Every morning Lillie would come back in. I would tell her to, "sit" and then give her a bone. I remember one August morning. We let Lillie outside. She came in. Gavin looked at her and said, "SIT!" His first word. That was my second step to meet you face to face, Autism. August, 2010, I was given hope. Hope that I would continue to hear my boy's voice!
Next came the countless hours of ABA (Applied Behavior Analysis), speech, OT, and services from a developmental specialist. Countless hours that consisted of working, learning, and most of all teaching my boy how to talk, socialize, and play. I continued to take more and more steps to meet you face to face. Some of those meetings were painful, and some of those meetings were joyful.
December, 2010, brought a gift. I walked into a room, Gavin looked at me and said, "Mama." Another step closer to facing you. That was the moment when I knew everything was going to be ok. I got to hear my boy call my name.
As I sit here today and reflect back to June, 2010, I see a new beginning. I see hope. I see laughter. I see joy. Each new encounter with you, Autism, brings me a little more understanding. I am not afraid to continue to meet you face to face. There are still some days where you bring me sadness and grief. There are still some days where I feel like you robbed me, you robbed my family, you robbed my boy. There are still some days where I honestly think that God got the wrong address and should have sent you to someone else. However, those days are beginning to be outnumbered. They are outnumbered by the days where my son's voice makes me smile, the days where his smile lights up a room. The days where my boy sings me a song.
So today, Autism, I shine a light on you. I shine a light for all you have taught me since June, 2010. I have learned to not take things for granted. I have learned that it is the little things in life that really matter. Autism, you have taught me to never give up, that it is ok to be different, and that love and support are what matter the most. You have made my marriage stronger, you have made my kids more accepting of others. You have taught us patience. You have encouraged us to work harder and never give up. Autism, I thank you and honor you with blue.
Sincerely,
Paula
The Mother of an Autistic Son
Monday, April 2, 2012
Tuesday, March 27, 2012
March Madness
Remember the saying, "March comes in like a lion and goes out like a lamb." Well, our March certainly came in like a lion. The end of February and into the month of March were very difficult trying times for our family on this journey. Gavin had a shift in behavior. Right after February school vacation, Gavin came down with a virus. He had a high temp, and ended up with an ear infection. Prior to the week he was sick, his behavior was, at times, unbearable. I honestly felt like he spent most of his day screaming. Screaming this ear piercing scream at the top of his lungs. He was sleeping horribly at night, up most nights three to four times. I spent most of the school vacation being exhausted. I realize now that he was probably trying to communicate with me that he wasn't feeling well, and was getting run down. I figured once his fever broke, the virus would be gone and he would be back to his somewhat old self with the exception of being on an antibiotic for the ear infection. Well, the week after was even worse then the week prior to him being sick. It was like Gavin was crawling out of his skin. He threw things when frustrated, screamed most of the time, and would not keep any clothes on during the day. It was nearly impossible to get him to even keep his underwear on. We were trying to figure out what changed. Did he eat something new? Did we change shampoo, soap, or laundry detergent? Then I realized that he was on an antibiotic. That was something new. Could this have caused him to be so dysregulated? My gut was telling me yes. During this time it was also difficult to get Gavin to sit still for any amount of time. Overall, he was just frustrated with life. Transitions were also difficult. I spent a great deal of time using visual pictures with Gavin to prepare him for a transition. As well as visual reminders to not scream, to use a quiet voice, to not throw things, and to keep his clothes on. It was purely exhausting. Oh, and I can't forget.....avoid making eye contact when he was having an outburst.
One Saturday in early March, William and Landon asked if we could go to Red Robin for lunch. Phil and I agreed with the boys that they deserved lunch at the Robin. I feel like most of the time we are doing things separately. One of us will take the two older boys some place, while the other stays home with Gavin. We are trying to work on scheduling individual one on one time with all of the boys. Which in today's busy world can seem impossible. We arrived at Red Robin and Gavin immediately gravitated towards a car video game. Phil waited to be seated. Well, the waiter seated us at a round table. My first thought was that there was no way Gavin was going to remain seated at a table. I was praying that Phil could read my mind. That he would speak up and get a booth. Sure enough he did! I could see him talking to the waiter and pointing to some empty booths. Then I could see the waiter shaking his head no. I was sending Phil vibes to not back down. To get them to change our table. Well, that didn't happen. I successfully transitioned Gavin to the table, however, Gavin refused to sit. He was up and running all around. Phil's reaction was to stand up and announce that we were leaving. I looked at William and Landon and saw the sadness in their eyes. It made my heart cry. I asked Phil to give it a chance. I then flagged down a waitress and told her about Gavin. I asked her to find us a booth. That I wanted to enjoy lunch together as a family and not chase my autistic son around the restaurant. She was great. She immediately moved us to a booth. Overall, it was a great lunch. The boys enjoyed themselves. Gavin did attempt to take off all his clothes. I was able to distract, entertain, and convince him to keep them on. He did take off his shoes, proceed to stand on the seat, jump, and flap. People were staring. Honestly, the new Paula didn't care. My kid was happy. He was being his happy self. What more could I ask for?
We also had Gavin's annual IEP review meeting at the beginning of March. Being in the role of a special education teacher during an IEP meeting is much easier then being in the role of a special education parent. Honestly, it is difficult to really listen to anything that is being said due to the fact that it is your child being talked about. Throughout the meeting I kept thinking, "Who would have thought I would be a special education parent someday?" "Who would have thought that it would be my son that has autism?" Gavin will continue to attend school full time in a PDD classroom. He will also receive speech and occupational therapy during the week. Gavin will also attend summer school. So, overall a successful IEP meeting.
The weekend after Gavin's IEP meeting we started the brushing program with him. Good news is that we saw immediate results within days. We are currently brushing him every two hours as well as doing joint compressions. Gavin's teacher and occupational therapist also created a sensory diet for him to use at home. Gavin is always seeking sensory input. So, this has also been helping. Since beginning the brushing program we have noticed an increase in eye contact, language, focusing, as well as playing with toys. We have two weeks left of brushing, then we stop. The effects of the program are suppose to have lasting effects and help to rewire the nervous system.
I also want to take a minute to give you a few facts from an Autism Speaks presentation that I recently attended. First, there is an 80% divorce rate of parents of children on the autism spectrum. Phil and I are working hard to not become part of those statistics. Second, it takes an average of $55,000 a year to raise an autistic child. Which now leads me to the G-Man Foundation. The G-Man Foundation Race for Autism Awareness will take place on April 15th. You can download the race application on the website www.gmanfoundation.com. The foundation will help kids and families affected by autism. In the midst of me creating this foundation, I have encountered some pretty amazing people early one. To Gavin's staff who made a generous donation to help get the foundation off the ground, to my colleague, Kathy, who is helping me organize the race, to my colleagues at work who are donating cases of water as well as raffle items, to my friends and family who are creating baskets for the raffle. Thank you. If you only knew how much I appreciate every single one of you. Today, one of the fourth grade students in Ms. Durkins' classroom was sent to my room. She was holding an envelope. Written on the front of the envelope was her name, Kimberly, Autism Awareness, and the amount of $22.25. She handed me the envelope to be used as a donation. I asked her where she got all this money. Her response was, "The 25 cents I found, the 2 dollars is from my dad (it was suppose to be my lunch money), and the $20 was my allowance." My eyes immediately filled with tears, and I had to look away. I praised her for donating her hard earned allowance to such a great cause. I asked her if she knew what autism was. She didn't. So, I did my best to explain it to her. I am hoping to introduce her to Gavin. I am amazed at what this young girl did. A great big thank you to Kimberly's parents! What an amazing daughter you have! Kimberly will always hold a very special place in my heart. When my dark autism cloud creeps up above and stays for a while, I am going to think of Kimberly and what she did for these kids. She will help clear that dark cloud away.
My niece, Nicole, recently had to do a project on a developmental disability. She chose autism. She asked if she could interview my family as well as Gavin. We did the interview last week. She presented it to her class today. I have not seen the video yet. But, I did ask her if I could get a copy to post on the blog. So, hopefully I will be able to do that soon.
April 2nd is World Autism Awareness Day. This is a day we celebrate the joys of having Gavin. We will wear blue to honor my boy. We have blue light bulbs and blue lanterns to "Light It Up Blue." It is also a day that I spend sometime recognizing Gavin's educators. Honestly, I feel like it is a holiday in my house.
Lastly, I am ready for March to leave like a lamb. I have learned a lot this month, even with all the madness. I have grown as a mother, I have grown as a person, I have grown as an educator, and I have grown a little more familiar with autism. I have grown to embrace it.
God Bless,
Paula
One Saturday in early March, William and Landon asked if we could go to Red Robin for lunch. Phil and I agreed with the boys that they deserved lunch at the Robin. I feel like most of the time we are doing things separately. One of us will take the two older boys some place, while the other stays home with Gavin. We are trying to work on scheduling individual one on one time with all of the boys. Which in today's busy world can seem impossible. We arrived at Red Robin and Gavin immediately gravitated towards a car video game. Phil waited to be seated. Well, the waiter seated us at a round table. My first thought was that there was no way Gavin was going to remain seated at a table. I was praying that Phil could read my mind. That he would speak up and get a booth. Sure enough he did! I could see him talking to the waiter and pointing to some empty booths. Then I could see the waiter shaking his head no. I was sending Phil vibes to not back down. To get them to change our table. Well, that didn't happen. I successfully transitioned Gavin to the table, however, Gavin refused to sit. He was up and running all around. Phil's reaction was to stand up and announce that we were leaving. I looked at William and Landon and saw the sadness in their eyes. It made my heart cry. I asked Phil to give it a chance. I then flagged down a waitress and told her about Gavin. I asked her to find us a booth. That I wanted to enjoy lunch together as a family and not chase my autistic son around the restaurant. She was great. She immediately moved us to a booth. Overall, it was a great lunch. The boys enjoyed themselves. Gavin did attempt to take off all his clothes. I was able to distract, entertain, and convince him to keep them on. He did take off his shoes, proceed to stand on the seat, jump, and flap. People were staring. Honestly, the new Paula didn't care. My kid was happy. He was being his happy self. What more could I ask for?
We also had Gavin's annual IEP review meeting at the beginning of March. Being in the role of a special education teacher during an IEP meeting is much easier then being in the role of a special education parent. Honestly, it is difficult to really listen to anything that is being said due to the fact that it is your child being talked about. Throughout the meeting I kept thinking, "Who would have thought I would be a special education parent someday?" "Who would have thought that it would be my son that has autism?" Gavin will continue to attend school full time in a PDD classroom. He will also receive speech and occupational therapy during the week. Gavin will also attend summer school. So, overall a successful IEP meeting.
The weekend after Gavin's IEP meeting we started the brushing program with him. Good news is that we saw immediate results within days. We are currently brushing him every two hours as well as doing joint compressions. Gavin's teacher and occupational therapist also created a sensory diet for him to use at home. Gavin is always seeking sensory input. So, this has also been helping. Since beginning the brushing program we have noticed an increase in eye contact, language, focusing, as well as playing with toys. We have two weeks left of brushing, then we stop. The effects of the program are suppose to have lasting effects and help to rewire the nervous system.
I also want to take a minute to give you a few facts from an Autism Speaks presentation that I recently attended. First, there is an 80% divorce rate of parents of children on the autism spectrum. Phil and I are working hard to not become part of those statistics. Second, it takes an average of $55,000 a year to raise an autistic child. Which now leads me to the G-Man Foundation. The G-Man Foundation Race for Autism Awareness will take place on April 15th. You can download the race application on the website www.gmanfoundation.com. The foundation will help kids and families affected by autism. In the midst of me creating this foundation, I have encountered some pretty amazing people early one. To Gavin's staff who made a generous donation to help get the foundation off the ground, to my colleague, Kathy, who is helping me organize the race, to my colleagues at work who are donating cases of water as well as raffle items, to my friends and family who are creating baskets for the raffle. Thank you. If you only knew how much I appreciate every single one of you. Today, one of the fourth grade students in Ms. Durkins' classroom was sent to my room. She was holding an envelope. Written on the front of the envelope was her name, Kimberly, Autism Awareness, and the amount of $22.25. She handed me the envelope to be used as a donation. I asked her where she got all this money. Her response was, "The 25 cents I found, the 2 dollars is from my dad (it was suppose to be my lunch money), and the $20 was my allowance." My eyes immediately filled with tears, and I had to look away. I praised her for donating her hard earned allowance to such a great cause. I asked her if she knew what autism was. She didn't. So, I did my best to explain it to her. I am hoping to introduce her to Gavin. I am amazed at what this young girl did. A great big thank you to Kimberly's parents! What an amazing daughter you have! Kimberly will always hold a very special place in my heart. When my dark autism cloud creeps up above and stays for a while, I am going to think of Kimberly and what she did for these kids. She will help clear that dark cloud away.
My niece, Nicole, recently had to do a project on a developmental disability. She chose autism. She asked if she could interview my family as well as Gavin. We did the interview last week. She presented it to her class today. I have not seen the video yet. But, I did ask her if I could get a copy to post on the blog. So, hopefully I will be able to do that soon.
April 2nd is World Autism Awareness Day. This is a day we celebrate the joys of having Gavin. We will wear blue to honor my boy. We have blue light bulbs and blue lanterns to "Light It Up Blue." It is also a day that I spend sometime recognizing Gavin's educators. Honestly, I feel like it is a holiday in my house.
Lastly, I am ready for March to leave like a lamb. I have learned a lot this month, even with all the madness. I have grown as a mother, I have grown as a person, I have grown as an educator, and I have grown a little more familiar with autism. I have grown to embrace it.
God Bless,
Paula
Sunday, February 19, 2012
The Diaper Bag
It has been almost a month since my last update, and so much has happened during this past month. First, I have to let everyone know what an amazing gift I received from the two PDD teachers, Lynne and Melissa, at Gavin's school. They had cards made for me. The cards are absolutely perfect, and they will help us to spread autism awareness. I am so fortunate to have met many kind people on this journey, and even more fortunate that some of these people are the ones educating my boy. Thank you, Lynne and Melissa, I am blessed to have you as colleagues as well as educators for my Gavin. I was able to upload the front and back of the card. If you scroll down at the end of the blog, you will find the picture of the card. Second, I have recently reconnected with an old friend, Keith, through Facebook. Keith and I used to work together at a special needs camp many, many years ago. Keith wrote a song called Prayer for Sunlight. He wrote it soon after my "Brick" blog. The song definitely describes the 'darkness' I sometimes feel about autism. Thank you, Keith, for writing Prayer for Sunlight. I am honored! I attempted to try to upload the song to the blog, however, I am not very tech savvy. So, here is the link: http://alonetone.com/keithlandryacoustic/tracks/prayer-for-sunlight
Gavin has had a difficult few weeks with a lot of stimming behavior. He will flap his hands, shake his head really fast back and forth, jump, walk on his tiptoes, script, and have echolalic speech. He has also had repetitive behavior like opening and closing drawers and doors, as well as putting on and off lights. Getting him to sit for even a short period of time has been very difficult. Sitting down as a family to eat dinner has been nonexistence lately. It has been exhausting redirecting his stims. Because Gavin can't communicate verbally how he is feeling, he will exhibit these types of behaviors. Some weeks there is an increase compared to others. I am now attempting to track the behaviors, and see if there is a pattern to them. The difficult thing is attempting to figure out 'why' he is doing this. I was recently told that even changing his shampoo, soap, or laundry detergent can cause this increase. Thanks, Lynne, for informing me of this. We did change soap recently. So, we have switched back, and are waiting to see if there is a decrease in these sensory seeking behaviors. I have also asked the Occupational Therapist who works with Gavin if we could look into a brushing program. A brushing program is based on the theory of Sensory Integration. The brushing technique uses a specific method of stimulation to help the brain organize sensory information. The brush used for the technique is a soft plastic surgical brush. It is effective in stimulating nerve endings in the skin. The brushing is done approximately every two hours for a specified number of days and then according to the needs of the child. I am very interested in trying this program with Gavin.
Gavin had a dentist appointment two weeks ago. This was his second visit to the dentist. His first visit did not go well. He would not sit in the chair, let alone let the hygienist or dentist look at his teeth. My fear is that he was going to be traumatized and would never let a dentist near him again. During his first visit, I had to hold him down so that the dentist could peek inside his mouth. The entire time Gavin screamed, cried, and was physically shaking. This was so heartbreaking. I do have to say I love the dentist that we go to. They are very patient and well informed about autism. They kept giving him breaks and was on board about the traumatizing piece. His second visit, was a bit better. Gavin was able to sit in the chair by himself. He let the hygienist and the dentist count his teeth. It took a while, but they managed to get a quick look. He would not let them put anything into his mouth. He walked away without being traumatized and hope that maybe next time he may let them touch his teeth. The hygienist did give me the tip of a cleaning brush so that I can work on desensitizing him before his next six month check up. Which leads me to talk about all the preparation that goes into preparing for visits like this. I woke very early the morning of his dentist appointment. I made sure his visual schedule was all set and included a picture of the dentist. I also printed a social story about going to the dentist. I continuously reviewed these things with him prior to leaving for the appointment. I also brought a bag filled with necessities (ipod touch, gameboy, books, toys) that may help to distract him during the visit. While in the waiting room, Landon asked me who is going to come in with him and sit with him. I totally forgot to prepare for this part of the visit. My focus was on a successful appointment for Gavin. I forgot that Landon hates the dentist. I forgot that Landon has anxiety over going to the dentist. My eyes filled with tears. What was I going to say? How could I even begin to explain to him that I forgot these things? Why didn't I make the appointment when Phil could be available to come? Thank goodness William didn't need me at the time. William went first, and by the time Gavin was done, I was able to sit in the room with Landon while he had his teeth cleaned. It was difficult to entertain Gavin due to my "bag of tricks" was not working that day. I was physically in the room with Landon, but I was not mentally there. I will from now on either schedule their appointments on different days, or when Phil is available to come.
Gavin also had a haircut appointment this week. Another appointment that I stress about. A year ago I would have to hold Gavin down during a haircut. He would yell, scream, and cry. His entire body would physically tremor. I would be so stressed bringing him to the hair salon. I felt bad for the women who came for a relaxing time at the hairdressers. When Gavin was there, that did not happen. I would try to make his appointments when I thought that it would be the slow time during the day. However, that was too unpredictable to tell. Over the past year, Gavin's therapists have done a lot of work with him on getting his haircut. They would run trials enacting this, and reinforce his positive behavior during the trials. His therapists told me that the day of his haircut we should rub his head as much as possible, especially around his ears and neck. This would help desentisize him. They also suggested to bring an edible reinforcer for after his haircut, and even during when he doesn't scream or cry. Lastly, they suggested a distraction like his iTouch to use during his haircut, and recommended breaks for him to regroup. Wow!! So much work goes into getting his haircut. Well, this past week, I was amazed. Gavin sat in the chair all by himself. He did not want to wear the cape. He got very upset when we attempted to put it on. It is all about NOT traumatizing him. So, we also try to remember to bring an extra shirt with us so that we can change him right after. He did not cry this time, he did not scream. Matter of fact, he actually giggled when our hairdresser, Darlene, cut the hair near his ears or neck. I can't say how grateful we are for Darlene. She loves my boy, is so patient with him, and always makes sure to tell me the progress she sees since the last time she saw him.
Yesterday, Phil and I took the boys to the playground. Gavin loves the playground. He loves to run, climb, and jump. Gavin spent most of his time at the playground running and flapping his hands. I am always on heightened alert when in public. I watch to see if anyone is staring or whispering. I am very protective. I was thinking yesterday how it is so easy to protect him now. What about when he gets older? Who will shelter him, who will protect him? I have to stop myself from thinking about this. Overall, yesterday, was a great day at the playground. There were lots of kids there. He did not interact with any of them. However, he sat at the end of a bench next to three adults. The man he sat next to said, "hello." Gavin went to run away. I redirected him and verbally cued him to look at the man. This man then looked at Gavin and said, "Hi Gavin, my name is Dennis." Gavin looked at the man and said, "Hi Dennis!" At that second I wasn't living in an autistic world. My eyes filled with tears. The man then put his hand out and asked for a hand shake. Well, Gavin's autistic mind has no idea what a hand shake is. When he heard hand shake, he proceeded to take both his hands and shake them at the man. The adults sitting on the bench chuckled and stated how cute he is. Gavin then ran away giggling. I contemplated telling the adults that Gavin was autistic. Instead I walked away smiling. If only this man knew how I will be forever grateful for his kindness. I wish I had given him a card. Since autism entered my world, I have come to appreciate kindness so much more.
A few exciting things that I have to mention is that the G-Man Foundation is officially a non-profit. We received checks yesterday with the Foundation's name written at the top. Wow! I can't believe my dream is becoming a reality. Also, there is a 5K run and a 3K walk scheduled for April 15th to raise funds for the G-Man Foundation. The walk will take place in Lowell, Ma. We designed a G-Man Foundation website. You can find it at www.gmanfoundation.com. A big thank you to our friend, Corey, for helping us with this. We are still working on setting up the website and attaching an application for the run/walk. Again, lots of things have happened within this past month.
I have come to realize something during this past month. I have thought about the time that William and Landon outgrew the diaper bag. How happy Phil and I were as parents to no longer have to be tied down to packing up and carrying a diaper bag. We celebrated when each boy graduated from their diaper bag. I have come to realize that Gavin may never graduate from his diaper bag. His bag no longer carries diapers. Instead his bag carries visuals, social stories, reinforcers, edibles, as well as lots of distractions to help during stressful times and appointments. His diaper bag is our attempt of always trying to stay one step ahead of Gavin. Such is the life in an autistic world. A world where that diaper bag will always exist. A world where there is so much work put into planning and preparing for appointments. A world where there is so much work put into planning and preparing for transitions and changes in his schedule. A world where there is so much work put into planning and preparing for family functions. A world that sometimes I am too tired to face somedays, a world where there is sometimes darkness, a world where there is screaming, yelling, stimming, crying, shaking, and a never ending diaper bag.
I have noticed lately that I when I see a picture of a family that I often ask "WHY?". Why were they chosen to have typically developing children? What does it feel like to NOT have an autistic child? What does it feel like to have all your children be typical? Why is life unfair? Why are things so much more difficult for my family? Moments like this is when I need to open the diaper bag. For in that diaper bag I will keep my family picture. A picture that may be wrinkled, imperfect, and even torn. However, that picture will warm my heart, that picture will answer my Prayer for Sunlight.
As always, thanks for checking in and traveling along with us on our autistic journey.
Fondly,
Paula
Gavin has had a difficult few weeks with a lot of stimming behavior. He will flap his hands, shake his head really fast back and forth, jump, walk on his tiptoes, script, and have echolalic speech. He has also had repetitive behavior like opening and closing drawers and doors, as well as putting on and off lights. Getting him to sit for even a short period of time has been very difficult. Sitting down as a family to eat dinner has been nonexistence lately. It has been exhausting redirecting his stims. Because Gavin can't communicate verbally how he is feeling, he will exhibit these types of behaviors. Some weeks there is an increase compared to others. I am now attempting to track the behaviors, and see if there is a pattern to them. The difficult thing is attempting to figure out 'why' he is doing this. I was recently told that even changing his shampoo, soap, or laundry detergent can cause this increase. Thanks, Lynne, for informing me of this. We did change soap recently. So, we have switched back, and are waiting to see if there is a decrease in these sensory seeking behaviors. I have also asked the Occupational Therapist who works with Gavin if we could look into a brushing program. A brushing program is based on the theory of Sensory Integration. The brushing technique uses a specific method of stimulation to help the brain organize sensory information. The brush used for the technique is a soft plastic surgical brush. It is effective in stimulating nerve endings in the skin. The brushing is done approximately every two hours for a specified number of days and then according to the needs of the child. I am very interested in trying this program with Gavin.
Gavin had a dentist appointment two weeks ago. This was his second visit to the dentist. His first visit did not go well. He would not sit in the chair, let alone let the hygienist or dentist look at his teeth. My fear is that he was going to be traumatized and would never let a dentist near him again. During his first visit, I had to hold him down so that the dentist could peek inside his mouth. The entire time Gavin screamed, cried, and was physically shaking. This was so heartbreaking. I do have to say I love the dentist that we go to. They are very patient and well informed about autism. They kept giving him breaks and was on board about the traumatizing piece. His second visit, was a bit better. Gavin was able to sit in the chair by himself. He let the hygienist and the dentist count his teeth. It took a while, but they managed to get a quick look. He would not let them put anything into his mouth. He walked away without being traumatized and hope that maybe next time he may let them touch his teeth. The hygienist did give me the tip of a cleaning brush so that I can work on desensitizing him before his next six month check up. Which leads me to talk about all the preparation that goes into preparing for visits like this. I woke very early the morning of his dentist appointment. I made sure his visual schedule was all set and included a picture of the dentist. I also printed a social story about going to the dentist. I continuously reviewed these things with him prior to leaving for the appointment. I also brought a bag filled with necessities (ipod touch, gameboy, books, toys) that may help to distract him during the visit. While in the waiting room, Landon asked me who is going to come in with him and sit with him. I totally forgot to prepare for this part of the visit. My focus was on a successful appointment for Gavin. I forgot that Landon hates the dentist. I forgot that Landon has anxiety over going to the dentist. My eyes filled with tears. What was I going to say? How could I even begin to explain to him that I forgot these things? Why didn't I make the appointment when Phil could be available to come? Thank goodness William didn't need me at the time. William went first, and by the time Gavin was done, I was able to sit in the room with Landon while he had his teeth cleaned. It was difficult to entertain Gavin due to my "bag of tricks" was not working that day. I was physically in the room with Landon, but I was not mentally there. I will from now on either schedule their appointments on different days, or when Phil is available to come.
Gavin also had a haircut appointment this week. Another appointment that I stress about. A year ago I would have to hold Gavin down during a haircut. He would yell, scream, and cry. His entire body would physically tremor. I would be so stressed bringing him to the hair salon. I felt bad for the women who came for a relaxing time at the hairdressers. When Gavin was there, that did not happen. I would try to make his appointments when I thought that it would be the slow time during the day. However, that was too unpredictable to tell. Over the past year, Gavin's therapists have done a lot of work with him on getting his haircut. They would run trials enacting this, and reinforce his positive behavior during the trials. His therapists told me that the day of his haircut we should rub his head as much as possible, especially around his ears and neck. This would help desentisize him. They also suggested to bring an edible reinforcer for after his haircut, and even during when he doesn't scream or cry. Lastly, they suggested a distraction like his iTouch to use during his haircut, and recommended breaks for him to regroup. Wow!! So much work goes into getting his haircut. Well, this past week, I was amazed. Gavin sat in the chair all by himself. He did not want to wear the cape. He got very upset when we attempted to put it on. It is all about NOT traumatizing him. So, we also try to remember to bring an extra shirt with us so that we can change him right after. He did not cry this time, he did not scream. Matter of fact, he actually giggled when our hairdresser, Darlene, cut the hair near his ears or neck. I can't say how grateful we are for Darlene. She loves my boy, is so patient with him, and always makes sure to tell me the progress she sees since the last time she saw him.
Yesterday, Phil and I took the boys to the playground. Gavin loves the playground. He loves to run, climb, and jump. Gavin spent most of his time at the playground running and flapping his hands. I am always on heightened alert when in public. I watch to see if anyone is staring or whispering. I am very protective. I was thinking yesterday how it is so easy to protect him now. What about when he gets older? Who will shelter him, who will protect him? I have to stop myself from thinking about this. Overall, yesterday, was a great day at the playground. There were lots of kids there. He did not interact with any of them. However, he sat at the end of a bench next to three adults. The man he sat next to said, "hello." Gavin went to run away. I redirected him and verbally cued him to look at the man. This man then looked at Gavin and said, "Hi Gavin, my name is Dennis." Gavin looked at the man and said, "Hi Dennis!" At that second I wasn't living in an autistic world. My eyes filled with tears. The man then put his hand out and asked for a hand shake. Well, Gavin's autistic mind has no idea what a hand shake is. When he heard hand shake, he proceeded to take both his hands and shake them at the man. The adults sitting on the bench chuckled and stated how cute he is. Gavin then ran away giggling. I contemplated telling the adults that Gavin was autistic. Instead I walked away smiling. If only this man knew how I will be forever grateful for his kindness. I wish I had given him a card. Since autism entered my world, I have come to appreciate kindness so much more.
A few exciting things that I have to mention is that the G-Man Foundation is officially a non-profit. We received checks yesterday with the Foundation's name written at the top. Wow! I can't believe my dream is becoming a reality. Also, there is a 5K run and a 3K walk scheduled for April 15th to raise funds for the G-Man Foundation. The walk will take place in Lowell, Ma. We designed a G-Man Foundation website. You can find it at www.gmanfoundation.com. A big thank you to our friend, Corey, for helping us with this. We are still working on setting up the website and attaching an application for the run/walk. Again, lots of things have happened within this past month.
I have come to realize something during this past month. I have thought about the time that William and Landon outgrew the diaper bag. How happy Phil and I were as parents to no longer have to be tied down to packing up and carrying a diaper bag. We celebrated when each boy graduated from their diaper bag. I have come to realize that Gavin may never graduate from his diaper bag. His bag no longer carries diapers. Instead his bag carries visuals, social stories, reinforcers, edibles, as well as lots of distractions to help during stressful times and appointments. His diaper bag is our attempt of always trying to stay one step ahead of Gavin. Such is the life in an autistic world. A world where that diaper bag will always exist. A world where there is so much work put into planning and preparing for appointments. A world where there is so much work put into planning and preparing for transitions and changes in his schedule. A world where there is so much work put into planning and preparing for family functions. A world that sometimes I am too tired to face somedays, a world where there is sometimes darkness, a world where there is screaming, yelling, stimming, crying, shaking, and a never ending diaper bag.
I have noticed lately that I when I see a picture of a family that I often ask "WHY?". Why were they chosen to have typically developing children? What does it feel like to NOT have an autistic child? What does it feel like to have all your children be typical? Why is life unfair? Why are things so much more difficult for my family? Moments like this is when I need to open the diaper bag. For in that diaper bag I will keep my family picture. A picture that may be wrinkled, imperfect, and even torn. However, that picture will warm my heart, that picture will answer my Prayer for Sunlight.
As always, thanks for checking in and traveling along with us on our autistic journey.
Fondly,
Paula
Saturday, January 21, 2012
Negative turns Positive
I recently went to see Shonda Schilling speak about her book, The Best Kind of Different. Shonda and Curt Schilling have four children. Their third child, Grant, is on the spectrum. He has Apsergers. I went to see Shonda with my friend, Meg, and Meg's friend, Julie. Meg and Julie both have children on the spectrum. Shonda talked about something that really hit home with me. She talked about how we should focus on NOT surrounding ourselves with NEGATIVE people. So, I have decided to dedicate this blog entry to just that. I am sure there are many people who have read this blog, or who are thinking negative thoughts. For example, "I don't get it. Move on with your life. Get over it. It's not that bad." The Paula before living with an autistic son would have gotten really upset by comments like these. The Paula now living with an autistic son feels bad for people who think this way. These are the people I pray for. I pray that they never have to experience an autistic world. For they are the ones who would just not be able to handle it, or "get it", or "move on."
Gavin loves to go to the mall. I, on the other hand, do not love bringing him. His behavior at the mall is inconsistent. I brought him before Christmas. He was great. Sat in the stroller, played with his iTouch, and enjoyed looking at things, and eating a snack. A couple of weeks ago my cell phone broke. We had to go to the mall so that I could get a new one. Well, this particular trip to the mall was frustrating. Frustrating for me, Gavin, Phil and the boys. His frustration affected the entire family. Phil and William had to attempt to keep him entertained in the Verizon store. Gavin did lots of screaming, and people did lots of staring. After my cell phone situation was taken care of, the boys wanted to go look at video games. It was my turn to keep Gavin entertained. However, his form of entertainment was to be out of the stroller and running all over the place. I was not having any of that, and Gavin was not having any of my stroller plan. He did lots of screaming. A couple of teenage boys walked by him. One was imitating Gavin's screams, the other was laughing. I politely asked them to please stop. They both apologized. A woman walked by me and commented, "Someone sounds stressed." I tried to comment in my most polite voice I could muster and said, "No, he is just autistic." with a polite smile on my face of course. We then decided it was time to leave. All of our stress levels were through the roof. As we walked through JC Penney Gavin's stress level reached its breaking point. He was screaming so loudly. Tears were rolling down his face. He reached the point of no return. People were staring. A sales associate made a comment. Some people were giggling. Some people were giving me nasty looks. Phil attempted to stop the stroller. He was going to try to rationalize with Gavin. He was going to attempt to calm him down. When Gavin reaches his point of no return, the only thing we can do is give him his time and space. There is no one magical thing to get him to stop. He stops when he is ready. I left the mall feeling so defeated. I thought about that trip to the mall for days afterwards. We have not attempted to return to the mall. I do know that I need to incorporate visuals the next time we go. I also need to create a social story about going to the mall. A social story is a short story written that will help him understand expectations and behavior. The story incorporates visuals and words. We can read the story to Gavin before he goes to the mall, and bring it with us to review while there. Living in an autistic world is definitely more work. A simple trip to the mall can be a living nightmare if you don't prepare before hand. Another thing I thought about for days after the trip was how to treat that negativity that comes from strangers when Gavin is having a melt down. I have decided to create little cards. They will be the size of a business card. The card will say something like, "Please check out my mom's blog. I am autistic. I would love if you could spread awareness. Love, Gavin." On the back side will be printed the link to this blog. Hopefully I can work on creating these during our next school vacation.
We continue to be very happy with Gavin's progress. However, I continue to struggle with the feeling of guilt because of not having ABA (Applied Behavior Analysis) at home. Gavin's Developmental Pediatrician recommended more ABA home therapy. However, our plate has been so full, and Gavin doesn't get home from school until after 3:30. So, I honestly feel like providing him with therapy at 4 o'clock in the evening would stress him out. He is tired by 4 o'clock, and needs to come home and relax. Speaking of home. The first thing Gavin does when he walks through the door after a full school day is to take off his jacket, shoes, socks, and pants. Loves just being in his underwear and t-shirt. We have worked hard the past couple of weeks with getting him to change into his pajamas vs. running around in just his underwear. He has been more cooperative about this.
Gavin is not yet able to carry on a conversation. However, we can now ask him how old he is. His reply, "Gavin's three!", as he attempts to hold up three fingers. We can ask him, "How are you?" His reply, "I am good." Phil and I went out for dinner last weekend to celebrate my birthday. My sister, Lisa, watched the boys for us. While at dinner I decided to give my sister a call to check in. Gavin got on the phone. I said, "Hi, Gavin." Gavin replied, "Hi Mama, how are you?" My reply, "I am good Gavin. How are you?" His response, "I'm good." He then ran away from the phone laughing hysterically. With tears streaming down my face, I looked over at Phil and said that was the BEST birthday present I could ever receive! I had a small conversation with Gavin over the telephone. Something I thought would never happen.
Before Shonda Schilling finished talking about her book she allowed for a question and answer session. It was nice to be surrounded by other parents who are living in somewhat of the same world that I am. I got up the courage to stand up with a microphone in hand. I asked Shonda how she juggles her attention and time between all her children. This is something I seem to struggle with, and the guilt can get to me. She answered me by trying to find creative ways. Whether it be by reading a book to one of them, having cuddle time, or just a 1 one 1 trip to the grocery store. It's the little ways that mean the most. I have not finished reading Shonda's book yet. However, she wrote and talked about how her oldest son was diagnosed with anorexia around the same time that Grant received his diagnosis. She told us that they will never know if the anorexia had anything to do with Grant. Boy, does this hit home with me. Right after Gavin's diagnosis there was this period in my life that I like to call "the dark time." During this dark time, Landon gained 12 pounds. I didn't notice it until months later. My Landon needed his mama. I was consumed in my own sadness that I failed to notice this. I will forever carry this guilt in my heart. Just another thing about living in an autistic world. The diagnosis affects the entire family in different ways.
Our journey with autism has taught us many things so far. It has taught us WHO are true friends are. It has taught us WHO our important family members are. It has taught us to always turn the negative into the positive. It has taught us to never judge someone else, or their life. As we do not walk in their shoes. To the negative people out there. My prayer for you is to hope that you continue to read this blog. My prayer for you is that hopefully someday you won't have to experience an autistic world. My prayer for you is that hopefully someday you will try a little harder to "GET IT". Just like my true friends do. To all my true friends and my important family members......I love you and thanks for attempting to understand. Thanks for your unconditional support. My journey is your journey. Together we will spread awareness. Together we will search for that key. Together we will make this world a better place.
We continue to be very happy with Gavin's progress. However, I continue to struggle with the feeling of guilt because of not having ABA (Applied Behavior Analysis) at home. Gavin's Developmental Pediatrician recommended more ABA home therapy. However, our plate has been so full, and Gavin doesn't get home from school until after 3:30. So, I honestly feel like providing him with therapy at 4 o'clock in the evening would stress him out. He is tired by 4 o'clock, and needs to come home and relax. Speaking of home. The first thing Gavin does when he walks through the door after a full school day is to take off his jacket, shoes, socks, and pants. Loves just being in his underwear and t-shirt. We have worked hard the past couple of weeks with getting him to change into his pajamas vs. running around in just his underwear. He has been more cooperative about this.
Gavin is not yet able to carry on a conversation. However, we can now ask him how old he is. His reply, "Gavin's three!", as he attempts to hold up three fingers. We can ask him, "How are you?" His reply, "I am good." Phil and I went out for dinner last weekend to celebrate my birthday. My sister, Lisa, watched the boys for us. While at dinner I decided to give my sister a call to check in. Gavin got on the phone. I said, "Hi, Gavin." Gavin replied, "Hi Mama, how are you?" My reply, "I am good Gavin. How are you?" His response, "I'm good." He then ran away from the phone laughing hysterically. With tears streaming down my face, I looked over at Phil and said that was the BEST birthday present I could ever receive! I had a small conversation with Gavin over the telephone. Something I thought would never happen.
Before Shonda Schilling finished talking about her book she allowed for a question and answer session. It was nice to be surrounded by other parents who are living in somewhat of the same world that I am. I got up the courage to stand up with a microphone in hand. I asked Shonda how she juggles her attention and time between all her children. This is something I seem to struggle with, and the guilt can get to me. She answered me by trying to find creative ways. Whether it be by reading a book to one of them, having cuddle time, or just a 1 one 1 trip to the grocery store. It's the little ways that mean the most. I have not finished reading Shonda's book yet. However, she wrote and talked about how her oldest son was diagnosed with anorexia around the same time that Grant received his diagnosis. She told us that they will never know if the anorexia had anything to do with Grant. Boy, does this hit home with me. Right after Gavin's diagnosis there was this period in my life that I like to call "the dark time." During this dark time, Landon gained 12 pounds. I didn't notice it until months later. My Landon needed his mama. I was consumed in my own sadness that I failed to notice this. I will forever carry this guilt in my heart. Just another thing about living in an autistic world. The diagnosis affects the entire family in different ways.
Our journey with autism has taught us many things so far. It has taught us WHO are true friends are. It has taught us WHO our important family members are. It has taught us to always turn the negative into the positive. It has taught us to never judge someone else, or their life. As we do not walk in their shoes. To the negative people out there. My prayer for you is to hope that you continue to read this blog. My prayer for you is that hopefully someday you won't have to experience an autistic world. My prayer for you is that hopefully someday you will try a little harder to "GET IT". Just like my true friends do. To all my true friends and my important family members......I love you and thanks for attempting to understand. Thanks for your unconditional support. My journey is your journey. Together we will spread awareness. Together we will search for that key. Together we will make this world a better place.
Sunday, January 1, 2012
The Gift
Happy New Year! I can't believe the holidays are over and a new year is beginning. Just wanted to give everyone a quick update. Overall, Gavin handled Christmas better then what I expected. I feel like when I set my expectations low, then he amazes me. I have learned too high expectations can often end with frustration and disappointment. The two weeks prior to Christmas were difficult. I think the physical change in the household had more of an affect on him then I realized. Gavin spent a great deal of time yelling, screaming, and having melt downs. When he has a screaming melt down, he will often pop little blood vessels around his eyes. It will often look like he has a rash. My heart breaks when this happens. Gavin was having screaming melt downs when he saw me making the bed. I would have to make sure he wasn't around when I made any of the beds. I mentioned this to his teacher, Lynne. She suggested that he probably didn't understand why I was making the bed and was associating it as having to go to school.
Gavin was very confused when it came time to unwrap a gift. We practiced the day before Christmas Eve. He would open a gift, then say "No, no!" and would want to put the wrapping paper back on. Little things like this we take for granted. William and Landon didn't have to learn how to unwrap a gift. Gavin received a wonderful rocking chair from his godmother, Dawn, for Christmas. Dawn and I were both so excited to show him the chair. She had painted his name on it. We made sure that we were away from the Christmas Eve crowd, and it was just the three of us when we gave him the chair. Well, he wanted nothing to do with it. The chair was the same color as the one he uses at school. So, my guess was that he was confused as to why the chair was there, and why it had his name on it. He would not sit on it, let alone go near it. I felt so sad. I wanted to see his excitement about receiving this special gift, however, instead I saw confusion. I was able to consult with his teacher again about the chair. Honestly, I don't know what I would do without Lynne. She is always there for encouragement, support, advice, and most of all to share her knowledge. Lynne reassured me to give him time. He will get used to the chair, if he doesn't then we could always paint it a different color. Well, it was interesting to watch him as the week went on. Each day he got a little closer to the chair. After a few days he touched it. After several days, he sat in it for a second, then ran away. By the end of the week, not only was he sitting in it, he was rocking and reading in it! Yeah!!
Gavin surprised us Christmas morning with wanting to unwrap his gifts. He unwrapped them very slowly, didn't say "No, no!" and did not try to wrap the gift back up. He didn't want to play with any of his new toys. However, with encouragement, modeling, and support, he is slowly beginning to enjoy some of his new toys. One present he does love is an angry bird stuffed animal. He carries it around the house and sleeps with it every night. Gavin surprised us again with handling the large family and friend gatherings at Christmas and New Years. I have learned that it is o.k. if he doesn't sit with us during a large family dinner. It is out of his routine, and we need to give him his space and time to process everything that is going on around him. Forcing him to sit and eat with everyone at the same time would just be melt down city.
I spent a great deal of time this week making Gavin as many visuals as possible. He now has a daily schedule displayed on the fridge. It has the day of the week as well as a picture of school or no school today. The schedule is then broken down into different time increments. For example, this morning the schedule had Sunday, No School today, then under that there was breakfast, watch tv, play with toys, clean up, get dressed, brush teeth, and make bed. He has not had one screaming melt down since I have been using the "make bed" picture on his schedule. This morning he walked into the bedroom while I was making the bed. He looked at me, smiled, and said, "time to make bed." WOW!!
I also consulted with Gavin's teacher about rearranging some of his things. He had a certain table that he used all last year for his Applied Behavior Analysis (ABA) therapy. It was in the corner of the living room. Lynne, reassured me that change is good, and encouraged me to make some changes. So, I made his old ABA corner into a reading, relaxing, and rocking corner (his new rocking chair is in the corner with a cubicle system that contains books, puzzles, and games). I moved his ABA table into the dining room. It is his new 'break area'. He will be verbally cued or physically brought to this area when he needs a time out (break). There is a puzzle for him to do there, as well as a visual picture hanging on the wall. The picture tells him what he can do instead of yelling. For example, I can say...I need help, I need a hug, I am mad, etc. He loves looking at all the visuals. I will say to him during the day, "Gavin, time to check your schedule." He will go right over to it, and read everything that needs to be done. If something has been completed then he will take the picture off, hand it to me, and say, "All done." The visual schedule will also help him know which days he goes to school, and which days he stays home. I do have to say that he was very mad with all the physical changes. He spent some time yelling at the cubicle system, pointing at it, and yelling, "NO GOOD! NO GOOD!" He is slowly warming up to the new areas in the house, and he seems much more relaxed with all the visuals that I have incorporated into our household. It has also been good for Landon. Landon is my schedule man. He makes sure that it is continuously updated. We went to our friends, The Tappers, to celebrate New Years Eve. I made sure the "Party" picture was on the schedule. This was something new for him, so he was not liking it. All morning he kept saying, "No party, no party." Yes, he did go to the party and had a great time. When all the kids were using the noise makers and wearing hats, Gavin was right there alongside all the kids, making noise, and wearing a hat. My heart danced with happiness witnessing this.
Gavin has been walking on his toes a lot this week. Seeing this usually gives me the signal that he is having issues self regulating. When we see him toe walking, then we place pressure on his shoulders. Not sure if maybe this is due to being home and not at school. Not sure if it the physical changes in the home environment. Not sure if he is wondering where the Christmas tree has gone. I guess I need another Lynne consult. Thank goodness she doesn't charge me. ha ha
As I begin a new year I would like to take a minute and reflect upon a gift that I was given. We have all received that one special gift in our life. It may be a piece of jewelry, a new book, or even a new piece of clothing. That special gift may be a new iPad, laptop, or even a Nook. We appreciate our gift, and the thought that went into it. The gift is placed in our hands and we are excited and eager to open it. We smile and thank the special someone who has chosen that gift for us. Getting that special gift makes up feel special and loved.
I received my gift on June 18, 2010. However, at the time I did not think it was a gift. Yes, the gift I was given was autism. It is not until now that I am beginning to see autism as my gift. Since June, 2010 I have thought of autism as being my curse. A curse for doing something wrong. A curse that I will have for a lifetime. A curse that left me wondering "why me?".
Autism has taught me patience, compassion, kindness, acceptance, and most of all love. It has taught me how to love and appreciate an individual for "WHO" they are, and not "WHAT" they are. It has showed me that each one of my children need me in different ways. Each one of my children learn in different ways. Each one of my children is loved in different ways. I love William for his 'old soul', for always wanting to help. I love Landon for his 'spice' and the humor he brings to the household. I love Gavin for his unconditional love, for his determination. Autism has taught me to appreciate the little things in life. It has taught me that life is not perfect. It has taught me to love more, work harder, and never give up. It has made me wiser. It has made me stronger. It has made me a better person. I am sure there will be some days when I will no longer want this gift. I will want to return it. I will take a good look at it and get tired of it. I will want to put it away for a little while. For now, I will learn to appreciate my gift. I will enjoy unwrapping it and continue figuring out how to use it. I will be thankful for my gift. I will pray to my special someone for giving me this gift. For, He, must have thought long and hard as to who should receive this gift.
Thank you for allowing me to share my GIFT with you.
God Bless,
Paula
Gavin was very confused when it came time to unwrap a gift. We practiced the day before Christmas Eve. He would open a gift, then say "No, no!" and would want to put the wrapping paper back on. Little things like this we take for granted. William and Landon didn't have to learn how to unwrap a gift. Gavin received a wonderful rocking chair from his godmother, Dawn, for Christmas. Dawn and I were both so excited to show him the chair. She had painted his name on it. We made sure that we were away from the Christmas Eve crowd, and it was just the three of us when we gave him the chair. Well, he wanted nothing to do with it. The chair was the same color as the one he uses at school. So, my guess was that he was confused as to why the chair was there, and why it had his name on it. He would not sit on it, let alone go near it. I felt so sad. I wanted to see his excitement about receiving this special gift, however, instead I saw confusion. I was able to consult with his teacher again about the chair. Honestly, I don't know what I would do without Lynne. She is always there for encouragement, support, advice, and most of all to share her knowledge. Lynne reassured me to give him time. He will get used to the chair, if he doesn't then we could always paint it a different color. Well, it was interesting to watch him as the week went on. Each day he got a little closer to the chair. After a few days he touched it. After several days, he sat in it for a second, then ran away. By the end of the week, not only was he sitting in it, he was rocking and reading in it! Yeah!!
Gavin surprised us Christmas morning with wanting to unwrap his gifts. He unwrapped them very slowly, didn't say "No, no!" and did not try to wrap the gift back up. He didn't want to play with any of his new toys. However, with encouragement, modeling, and support, he is slowly beginning to enjoy some of his new toys. One present he does love is an angry bird stuffed animal. He carries it around the house and sleeps with it every night. Gavin surprised us again with handling the large family and friend gatherings at Christmas and New Years. I have learned that it is o.k. if he doesn't sit with us during a large family dinner. It is out of his routine, and we need to give him his space and time to process everything that is going on around him. Forcing him to sit and eat with everyone at the same time would just be melt down city.
I spent a great deal of time this week making Gavin as many visuals as possible. He now has a daily schedule displayed on the fridge. It has the day of the week as well as a picture of school or no school today. The schedule is then broken down into different time increments. For example, this morning the schedule had Sunday, No School today, then under that there was breakfast, watch tv, play with toys, clean up, get dressed, brush teeth, and make bed. He has not had one screaming melt down since I have been using the "make bed" picture on his schedule. This morning he walked into the bedroom while I was making the bed. He looked at me, smiled, and said, "time to make bed." WOW!!
I also consulted with Gavin's teacher about rearranging some of his things. He had a certain table that he used all last year for his Applied Behavior Analysis (ABA) therapy. It was in the corner of the living room. Lynne, reassured me that change is good, and encouraged me to make some changes. So, I made his old ABA corner into a reading, relaxing, and rocking corner (his new rocking chair is in the corner with a cubicle system that contains books, puzzles, and games). I moved his ABA table into the dining room. It is his new 'break area'. He will be verbally cued or physically brought to this area when he needs a time out (break). There is a puzzle for him to do there, as well as a visual picture hanging on the wall. The picture tells him what he can do instead of yelling. For example, I can say...I need help, I need a hug, I am mad, etc. He loves looking at all the visuals. I will say to him during the day, "Gavin, time to check your schedule." He will go right over to it, and read everything that needs to be done. If something has been completed then he will take the picture off, hand it to me, and say, "All done." The visual schedule will also help him know which days he goes to school, and which days he stays home. I do have to say that he was very mad with all the physical changes. He spent some time yelling at the cubicle system, pointing at it, and yelling, "NO GOOD! NO GOOD!" He is slowly warming up to the new areas in the house, and he seems much more relaxed with all the visuals that I have incorporated into our household. It has also been good for Landon. Landon is my schedule man. He makes sure that it is continuously updated. We went to our friends, The Tappers, to celebrate New Years Eve. I made sure the "Party" picture was on the schedule. This was something new for him, so he was not liking it. All morning he kept saying, "No party, no party." Yes, he did go to the party and had a great time. When all the kids were using the noise makers and wearing hats, Gavin was right there alongside all the kids, making noise, and wearing a hat. My heart danced with happiness witnessing this.
Gavin has been walking on his toes a lot this week. Seeing this usually gives me the signal that he is having issues self regulating. When we see him toe walking, then we place pressure on his shoulders. Not sure if maybe this is due to being home and not at school. Not sure if it the physical changes in the home environment. Not sure if he is wondering where the Christmas tree has gone. I guess I need another Lynne consult. Thank goodness she doesn't charge me. ha ha
As I begin a new year I would like to take a minute and reflect upon a gift that I was given. We have all received that one special gift in our life. It may be a piece of jewelry, a new book, or even a new piece of clothing. That special gift may be a new iPad, laptop, or even a Nook. We appreciate our gift, and the thought that went into it. The gift is placed in our hands and we are excited and eager to open it. We smile and thank the special someone who has chosen that gift for us. Getting that special gift makes up feel special and loved.
I received my gift on June 18, 2010. However, at the time I did not think it was a gift. Yes, the gift I was given was autism. It is not until now that I am beginning to see autism as my gift. Since June, 2010 I have thought of autism as being my curse. A curse for doing something wrong. A curse that I will have for a lifetime. A curse that left me wondering "why me?".
Autism has taught me patience, compassion, kindness, acceptance, and most of all love. It has taught me how to love and appreciate an individual for "WHO" they are, and not "WHAT" they are. It has showed me that each one of my children need me in different ways. Each one of my children learn in different ways. Each one of my children is loved in different ways. I love William for his 'old soul', for always wanting to help. I love Landon for his 'spice' and the humor he brings to the household. I love Gavin for his unconditional love, for his determination. Autism has taught me to appreciate the little things in life. It has taught me that life is not perfect. It has taught me to love more, work harder, and never give up. It has made me wiser. It has made me stronger. It has made me a better person. I am sure there will be some days when I will no longer want this gift. I will want to return it. I will take a good look at it and get tired of it. I will want to put it away for a little while. For now, I will learn to appreciate my gift. I will enjoy unwrapping it and continue figuring out how to use it. I will be thankful for my gift. I will pray to my special someone for giving me this gift. For, He, must have thought long and hard as to who should receive this gift.
Thank you for allowing me to share my GIFT with you.
God Bless,
Paula
Saturday, December 17, 2011
THE BRICK
Well, I had my first "THE BRICK" experience. This experience consists of being hit by an emotional brick. You do not see this brick, and it shows up when you least expect it. It comes out of no where and its cause to fall and hit you is unknown. I had this experience at William and Landon's school Christmas concert last night. I was looking forward to seeing my two older boys perform. They have been very excited about their school concert. I arranged for my sister, Lisa, to come to the house after work to watch Gavin so that Phil and I could enjoy the concert with no distractions. Well, that damn brick was a distraction the entire night for me! There is a 3 year old class at the boys' school. As soon as the 3 year olds came onto the stage to sing, that is when the brick fell and hit me. This overwhelming emotional response came over me. I started crying and couldn't stop. I just kept thinking, "That should be Gavin's class. Gavin should be up there right now." Then I started thinking about how he has been "robbed" of so many life experiences. Robbed of so many things. I have been robbed! I sat and watched all the excited parents around me. Smiling, taking pictures, waving to their kids. Calling their kids names. Their children waving back. The room was filled with excitement, I sat there attempting to keep my composure for my other two children. Well, that brick hit me hard. The tears wouldn't stop, they couldn't stop. I contemplated leaving. I knew I couldn't. I had to be there for William and Landon. I sat through the entire performance crying, and attempting to hide my tears as best as I could. I wanted to stand up, and yell to the people around me, "Count yourself lucky that all your children are healthy. Count yourself lucky that you have children who function normally! Count yourself lucky! Do not take anything for granted. One day you may hear the words, "your son is autistic!'" That damn brick would not stop hitting me. Every time I thought it was gone, it would hit me even harder. At one point, I looked over at Phil with tears streaming down my face. I told him that I couldn't stop thinking about Gavin. He told me he was thinking the same thing. That he couldn't get it off his mind. I guess he got hit by "THE BRICK" too. However, he managed to hide it better then me.
Well, today I am now suffering from "THE BRICK" hangover. I am so emotionally drained. I look like I have been crying for days, and my head is pounding. Landon just came over and asked my why I was crying. How can I even begin to make him understand. What do I say? I told him I was so proud of him. That he made me so incredibly proud last night that is why I am crying. I am crying tears of joy. He smiled and walked away. If only he knew the pain in my heart. If only he knew my daily struggles. If only he knew about "THE BRICK". I will not let him know. I will cry my tears of joy for him and his brothers. I will also cry my tears of being robbed for my Gavin. Such is the life in an autistic world.
So, I will now attempt to end this blog with something positive. I may have been robbed, but I have also been given three gifts. Each gift is unique. My job as a parent is to unconditionally love, nurture, and be thankful for my three gifts. Each one of my boys brings such joy to my life. Our Autism journey is just beginning. It will be filled with obstacles, tears, frustration, and "THE BRICK". However, it will also be filled with joy, appreciation of small things, and understanding. Now may be a good time to start focusing on the G Man Foundation. This will be my New Year's resolution. Figuring out how to get this foundation started, and what good it can do. Lastly, William and Landon did a fabulous job at their school Christmas concert.
For every locked mind, there is a key to find. I am working hard to find that key. I will work every day, every hour, every minute. My goal is to find that key. The key may not be found in my lifetime, but I will have a part in finding it.
As always thanks for checking in. You are all a part of my journey. Your kind words, words of encouragement and support are what keep me going. I am hoping that "THE BRICK" keeps its distance. But for now, I will focus on recovering from my hangover and enjoying my gifts.
Thursday, December 8, 2011
"Behavior hurdles"
I feel like so much has happened since my last blog. Gavin continues to make great progress in school. I know I have said it once, but I am going to say it again, we are so grateful for Gavin's teacher, Lynne, as well as all the staff at the Pawtucketville Memorial Elementary School that work with our Gavin. He continues to open doors in me that I never knew existed. My knowledge about autism continues to grow. Gavin has been working on greetings in school. He now greets everyone he knows by name. He will say, "Hi, Mama." I will then respond with, "Hi, Gavin. How are you?" Gavin's immediate response is "I'm good!" Music to my ears. No matter what kind of day I have had, I will always get the response, "I'm good." from him. It makes my heart smile.
As much as Gavin is making progress, there are also behaviors that we have to deal with. I feel like we get over one behavior hurdle, then another one comes. Gavin's new behavior hurdle is at school. He has been refusing to eat for his teacher. He now basically wants Lynne to force feed him. The great part about being at the same school as him is that I have direct access to Lynne. She is always available to bounce ideas off of. Gavin often leaves the cafeteria yelling and crying with his food, to have to go back to the classroom to eat. After speaking with the Autism Specialist, Christine, she informed me that he is stimming from hearing Lynne's verbal requests. When I think of autism and stimming, the first things that come to mind are hand flapping, body spinning, rocking, lining up or spinning toys. Stimming can also include echolalia, perseveration, and repeating rote phrases. Wow! Learned something new again! Most of the time, stims are coping strategies due to overloads in sensory perception, such as noisy shopping centres, or due to psychological demands such as learning new tasks. Sometimes, autistic children may also stim from lack of sensory input. Christine also informed me that he is targeting Lynne because she is the one who redirects him the most (being his teacher). There are more demands being placed on him at school. So, I was wondering if I should be putting more demands on him at home. Both Christine and Lynne assured me not to worry about home demands. Beginning tomorrow, Lynne's only verbal interaction with him will be when she needs to reinforce him for doing a nice job. All other directives from her will be done using gestures or pictures. Again, I am so grateful for Lynne and Christine. The wealth of their knowledge amazes me and motivates me to learn more. Hopefully these interventions will get us over the behavior hurdle successfully. Just wondering and waiting for the next one.
We had a wonderful family outing last week. We went to a college hockey game. Thanks to our friend, Sandy, for the great tickets. Phil was so nervous about bringing Gavin. Kept questioning me about the decision. At first, we decided to take two separate cars. This way one of us could bring Gavin home, while the other one stayed with William and Landon. Then I decided to take one car. If Gavin had to leave, then one of us would go, the other would stay and find a ride home with our two older boys. We went with a group of people. So, I figured someone would be available to help in the ride department. Well, our little guy not only surprised us, he amazed us. He sat the entire game, taking everything in. He only got upset a few times. Once, when the lights went out. He started yelling, "Lights on! Lights on!" The other times were when UMass scored. People all around us were cheering very, very loudly. His eyes filled with tears, he began cheering loudly. However, I could see the confusion in his eyes. He had no idea why people were yelling and screaming. He had no idea why he was yelling and screaming. Seeing the look in his eyes made my heart cry. It also made me realize that something little like cheering at a sporting event comes so easily understood to us. In an autistic mind, it is boggling.
We had a very low key Thanksgiving. Kept it very quiet and routine for the little guy. Gavin is very routine. Taking him out of his routine often backfires. All our Christmas decorations are up. I was wondering how this was going to affect him. His trampoline had to go down in the basement to make way for the Christmas tree. So far, so good. He does like to touch the ornaments, feel them, and read them if they have words. He is obsessed with trying to read everything and anything he sees. If you tell him what something says, he will go back to the item and read it over and over again. He has also been scripting a lot more lately. Scripting is reciting lines from movies, commercials, books, etc. Some experts predict it is a coping mechanism that is used during high stress periods, hence, a form of stimming. Others believe it is just an attempt to communicate in some form and this is the form they know. Gavin repeats something he heard and imprinted into memory. He has a favorite app on the itouch that he likes to use. He will often repeat over and over again, "What do you do after you use the wash room? Yeah, you wash your hands after you use the washroom." What goes together, Yeah, Bicycle and helmet go together." He will say these things repeatedly. He often wants me to repeat what he is saying. Now, I am guessing that he is stimming from this verbal input.
My good friend, Beth, recently asked me if Gavin is doing things that my other two boys did at his age. My response is that I honestly can't remember what a 'typical' three year old does. I guess if he was a 'typical' three year old he would be excited about Santa bringing presents. He would be playing with his toy cars, he would be attending a 'typical' pre-school, he would tell me who his friends are. He would tell me how his day was, he would want to sit on Santa's lap and ask for a special present. This is my 'typical normal' world for me. It is a challenging world. A world where there are so many unknowns. A world filled with tears of joy and tears of frustration. A world where I question everyday if I am doing the right thing. A world filled with behavior hurdles. A world filled with teaching my son NOT to stim and script. But, it is my world. A world of acceptance and love.
Happy holidays everyone and thanks for taking the time to check in.
As much as Gavin is making progress, there are also behaviors that we have to deal with. I feel like we get over one behavior hurdle, then another one comes. Gavin's new behavior hurdle is at school. He has been refusing to eat for his teacher. He now basically wants Lynne to force feed him. The great part about being at the same school as him is that I have direct access to Lynne. She is always available to bounce ideas off of. Gavin often leaves the cafeteria yelling and crying with his food, to have to go back to the classroom to eat. After speaking with the Autism Specialist, Christine, she informed me that he is stimming from hearing Lynne's verbal requests. When I think of autism and stimming, the first things that come to mind are hand flapping, body spinning, rocking, lining up or spinning toys. Stimming can also include echolalia, perseveration, and repeating rote phrases. Wow! Learned something new again! Most of the time, stims are coping strategies due to overloads in sensory perception, such as noisy shopping centres, or due to psychological demands such as learning new tasks. Sometimes, autistic children may also stim from lack of sensory input. Christine also informed me that he is targeting Lynne because she is the one who redirects him the most (being his teacher). There are more demands being placed on him at school. So, I was wondering if I should be putting more demands on him at home. Both Christine and Lynne assured me not to worry about home demands. Beginning tomorrow, Lynne's only verbal interaction with him will be when she needs to reinforce him for doing a nice job. All other directives from her will be done using gestures or pictures. Again, I am so grateful for Lynne and Christine. The wealth of their knowledge amazes me and motivates me to learn more. Hopefully these interventions will get us over the behavior hurdle successfully. Just wondering and waiting for the next one.
We had a wonderful family outing last week. We went to a college hockey game. Thanks to our friend, Sandy, for the great tickets. Phil was so nervous about bringing Gavin. Kept questioning me about the decision. At first, we decided to take two separate cars. This way one of us could bring Gavin home, while the other one stayed with William and Landon. Then I decided to take one car. If Gavin had to leave, then one of us would go, the other would stay and find a ride home with our two older boys. We went with a group of people. So, I figured someone would be available to help in the ride department. Well, our little guy not only surprised us, he amazed us. He sat the entire game, taking everything in. He only got upset a few times. Once, when the lights went out. He started yelling, "Lights on! Lights on!" The other times were when UMass scored. People all around us were cheering very, very loudly. His eyes filled with tears, he began cheering loudly. However, I could see the confusion in his eyes. He had no idea why people were yelling and screaming. He had no idea why he was yelling and screaming. Seeing the look in his eyes made my heart cry. It also made me realize that something little like cheering at a sporting event comes so easily understood to us. In an autistic mind, it is boggling.
We had a very low key Thanksgiving. Kept it very quiet and routine for the little guy. Gavin is very routine. Taking him out of his routine often backfires. All our Christmas decorations are up. I was wondering how this was going to affect him. His trampoline had to go down in the basement to make way for the Christmas tree. So far, so good. He does like to touch the ornaments, feel them, and read them if they have words. He is obsessed with trying to read everything and anything he sees. If you tell him what something says, he will go back to the item and read it over and over again. He has also been scripting a lot more lately. Scripting is reciting lines from movies, commercials, books, etc. Some experts predict it is a coping mechanism that is used during high stress periods, hence, a form of stimming. Others believe it is just an attempt to communicate in some form and this is the form they know. Gavin repeats something he heard and imprinted into memory. He has a favorite app on the itouch that he likes to use. He will often repeat over and over again, "What do you do after you use the wash room? Yeah, you wash your hands after you use the washroom." What goes together, Yeah, Bicycle and helmet go together." He will say these things repeatedly. He often wants me to repeat what he is saying. Now, I am guessing that he is stimming from this verbal input.
My good friend, Beth, recently asked me if Gavin is doing things that my other two boys did at his age. My response is that I honestly can't remember what a 'typical' three year old does. I guess if he was a 'typical' three year old he would be excited about Santa bringing presents. He would be playing with his toy cars, he would be attending a 'typical' pre-school, he would tell me who his friends are. He would tell me how his day was, he would want to sit on Santa's lap and ask for a special present. This is my 'typical normal' world for me. It is a challenging world. A world where there are so many unknowns. A world filled with tears of joy and tears of frustration. A world where I question everyday if I am doing the right thing. A world filled with behavior hurdles. A world filled with teaching my son NOT to stim and script. But, it is my world. A world of acceptance and love.
Happy holidays everyone and thanks for taking the time to check in.
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