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
