Just wanted to take a minute to update everyone on Gavin's progress. He began preschool at the end of August. He is a full time student in a PDD program. Overall, he had a great transition to school. Gavin loves school. I transferred to teach at the same school that he is attending. This way, he comes in with me, and leaves with me. The plus side....one less drop off in the morning, one less pick up in the afternoon. The down side...it can be difficult before school and after school to try to get things done in my classroom due to the fact that he is "all over" the place. Since the start of school, Gavin has mastered drinking from a juice box. We are now working on drinking from a cup. We started potty training last week. He has been dry the past three consecutive days at school. He has had a few accidents at home. Gavin loves verbal praise. Every time he successfully goes on the potty, he will look at me and say, "good boy!". We are blessed to have been given such a wonderful teacher for Gavin. I can't say enough incredible things about Lynne. You can tell she loves what she does and makes such an impact on her students. The challenge about potty training is that he LOVES playing in water. So, he independently puts himself on the potty every ten minutes. Good thing, right. Well, as he sits on the toilet, he loves to play in the toilet water. The more of a reaction you give him, the more he will do it. So, right now I feel like I spend my entire day in the bathroom. Physically redirecting him out of the toilet while trying to make no eye contact. After an hour of this, I can feel my patience starting to fade. Lately, Gavin has been obsessed with lights, buttons, and doors. He is constantly shutting and opening doors, shutting off and putting on lights, and pressing any button that he can find. One night last week, I came downstairs after putting the boys to bed and noticed the house had a funny odor. It smelled like something was burning. Well, I quickly noticed that Gavin had turned all the thermostats up to 90! Ugh! So, you could call my house, "The house of signs." There are "STOP" signs, "Do not enter" signs, and "Do not touch" signs over anything and everything! His new thing is that he likes to take the sign off, look at you, and say "Do not touch!" all while he is touching what he is not suppose to be touching. Again, the more of a reaction you give him, the more he does it. Some days are just so EXHAUSTING!! Last weekend was just so exhausting for me. I actually cried myself to sleep. I told God that I really don't know if I can do this. Can I really be Gavin's mom? I just wasn't sure if I could do this anymore. I then asked him for the strength to keep me going. Some days I really depend on my faith to get me through.
I also carry this guilt inside my heart that I neglect my other children. William is so laid back and such a big help. My middle man, Landon, is the "spicy" one. He can be defiant and stubborn. After a long talk with their pediatrician about whether I need to have them see a therapist in fear that I am "scarring" them, she assured me that they do not need therapy. They just need outlets. William's outlet is football and friends. Phil coaches his team. So, it is good alone time with dad. We have searched all year for outlets for Landon. We finally signed him up to be a cub scout. He will be in the same pack as his best buddy, Zach. This is something that Landon can do with his dad all by himself. He is very excited about it.
Gavin is currently on a waiting list for the Autism Language Program at Children's Hospital. We are hoping that he will be able to get an appointment by January/February. We also had to have genetic testing done on him. Long story short, his genetic testing showed a deletion on his 14th chromosome. The chromosome is there, just has a deletion on it. So far we have no answers about this. We have been given the run around due to insurance!! The insurance will not cover all the genetic testing. The only thing the doctors can tell us is that it may be linked to ALS/Lou Gerig's Disease. We need to have more testing done in order to get more answers. However, that may mean thousands of dollars out of our pockets. So frustrating!!
I have had the opportunity to talk with parents or family members of children around Gavin's age who have recently received an ASD (Autism Spectrum Disorder) diagnosis. This has been therapeutic for me in more ways then one. It feels like I am doing something good, somehow, someway I am helping them. Even if all I am doing is listening.
And then there are our good 'Gavin' days......the days that his smile melts your heart. The days that he gives you a big hug. The days that he says a new word. The days that you walk into the room, he looks at you and says, "Hi mama!". The days that I see his siblings interact with him with such love for him. The day that his cousin, Tealei, tells her teacher that her favorite group is the "G-Man Group!". The days that I hear him mimic his teacher by saying, "One more minute guys.". The days that I hear him sing a song. The days that I can share his story with people like you.
Thanks for taking the time to check in.
Saturday, September 17, 2011
Monday, August 22, 2011
Where to begin....................
Wow, I can't believe that I am actually going to start blogging. Blogging; is that even a word. Well, several people have suggested that I start a blog about my journey with autism. I guess I should correct that and say "our" journey with autism.
Gavin had his first follow up appt at Children's today since his initial diagnosis. His appt was actually six months overdue. However, I was so overwhelmed this past year with his intensive therapy schedule, a trip to Boston was the last thing on my mind. The drive in was crazy. I am a country girl. Hate driving in the city. Sure enough, my gps took us directly into the "heart of Boston". We ended up at Quincy Market instead of Children's. Thank goodness my aunt came with me. We were able to ask for directions as well as reprogram the gps, and we were only 5 minutes late. Gavin's Developmental Pedi, Dr. Rappapport, was very pleased with the progress he is seeing. We talked a lot about the difficult behavior we are seeing at home; throwing things, screaming, sometimes biting, and hair pulling. He suggested that we continue to ignore, ignore, ignore. We also talked about his "stereotypical" behavior; jumping, visual stims, echolalich speech, repetitive behavior. Gavin is hyper focused on letters, numbers, words. I have a picture hanging with the words "It's the beach." All morning he would walk over to the picture, run his finger along it, and read the words. Over, and over, and over again. The first two times you think it is cute. After the sixth, seventh, tenth time, well, you are like, "ok, Gav, let's find something else to do!" Or when he watches a video and plays the same part over and over and over again....yikes! Dr. Rappapport did lots of observing of Gavin. He then told me how pleased he was, however, he still thinks he needs an intensive program. My heart sank and my eyes filled with tears. I guess I was hoping to hear something else...."Your son is not autistic anymore." "Your son is losing his diagnosis." "Your son is doing so good that in two years he will no longer be autistic." Reality slap, Paula! So, he is recommending more ABA home therapy. He also referred us to the LAPP Program (Children's Hospital) in Waltham. They have an Autism Language Program that Gavin would be a good candidate for. I am excited to hear back from this program.
Before I left Dr. Rappapport's office he asked how everyone in the family was doing, especially me. I smiled and told him I was good. That I was happy that we made it through the year. I don't think he wanted to hear how I REALLY felt. How everyday is a challenge. I spend most if not all my day redirecting, trying to figure out what Gavin needs, what he wants, trying to redirect his visual stim, ignore his high pitched scream, getting him to respond to his name, getting him to make eye contact, and make sure my other two boys' needs are met. How somedays I grieve for a "typical three year old", I grieve for his brothers. I stay awake at might wondering what is going to happen to my little boy. Will he be able to function independently someday? That everyday I question, "why, why, why??" So, I guess my smile and response was best.
We also had to have Gavin's height, weight, and blood pressure taken before we left. Well, it was an entire process to get him to step on the scale. Gavin did not understand the function of the scale. Trying to explain it to him is no use. He doesn't understand the function of language. So, I stood on the scale to show him visually what it was for. It didn't work. We attempted to lay him down on the baby scale. That didn't work. We even attempted to have me hold him and weigh us together, that still didn't work. After about fifteen minutes he noticed the scale had buttons at the top. He wanted to touch the buttons. So, he stood on the scale just to touch the buttons and we prayed it was long enough to give us his weight. IT WORKED! We had to hold him down to measure him. When it came time for his blood pressure, I told the nurse to forget it! Tell the dr. he wouldn't cooperate..ha! She agreed. Thank God!!
We had a easy ride home from Boston. Didn't get lost, and stopped for icecream!!
I can't believe I finished typing my first blog. Just to let you know, it probably took me about an hour and a half. I had to keep stopping and redirecting my little guy away from the computer.
Lastly, just want to give a shout out to all my family and friends. Thanks for coming along with me on this journey. "OUR JOURNEY". I would not have survived this year without each and everyone of you. I love you all!! I hope you enjoyed reading my very first blog. Please forgive the typos. Stay tuned....................
Gavin had his first follow up appt at Children's today since his initial diagnosis. His appt was actually six months overdue. However, I was so overwhelmed this past year with his intensive therapy schedule, a trip to Boston was the last thing on my mind. The drive in was crazy. I am a country girl. Hate driving in the city. Sure enough, my gps took us directly into the "heart of Boston". We ended up at Quincy Market instead of Children's. Thank goodness my aunt came with me. We were able to ask for directions as well as reprogram the gps, and we were only 5 minutes late. Gavin's Developmental Pedi, Dr. Rappapport, was very pleased with the progress he is seeing. We talked a lot about the difficult behavior we are seeing at home; throwing things, screaming, sometimes biting, and hair pulling. He suggested that we continue to ignore, ignore, ignore. We also talked about his "stereotypical" behavior; jumping, visual stims, echolalich speech, repetitive behavior. Gavin is hyper focused on letters, numbers, words. I have a picture hanging with the words "It's the beach." All morning he would walk over to the picture, run his finger along it, and read the words. Over, and over, and over again. The first two times you think it is cute. After the sixth, seventh, tenth time, well, you are like, "ok, Gav, let's find something else to do!" Or when he watches a video and plays the same part over and over and over again....yikes! Dr. Rappapport did lots of observing of Gavin. He then told me how pleased he was, however, he still thinks he needs an intensive program. My heart sank and my eyes filled with tears. I guess I was hoping to hear something else...."Your son is not autistic anymore." "Your son is losing his diagnosis." "Your son is doing so good that in two years he will no longer be autistic." Reality slap, Paula! So, he is recommending more ABA home therapy. He also referred us to the LAPP Program (Children's Hospital) in Waltham. They have an Autism Language Program that Gavin would be a good candidate for. I am excited to hear back from this program.
Before I left Dr. Rappapport's office he asked how everyone in the family was doing, especially me. I smiled and told him I was good. That I was happy that we made it through the year. I don't think he wanted to hear how I REALLY felt. How everyday is a challenge. I spend most if not all my day redirecting, trying to figure out what Gavin needs, what he wants, trying to redirect his visual stim, ignore his high pitched scream, getting him to respond to his name, getting him to make eye contact, and make sure my other two boys' needs are met. How somedays I grieve for a "typical three year old", I grieve for his brothers. I stay awake at might wondering what is going to happen to my little boy. Will he be able to function independently someday? That everyday I question, "why, why, why??" So, I guess my smile and response was best.
We also had to have Gavin's height, weight, and blood pressure taken before we left. Well, it was an entire process to get him to step on the scale. Gavin did not understand the function of the scale. Trying to explain it to him is no use. He doesn't understand the function of language. So, I stood on the scale to show him visually what it was for. It didn't work. We attempted to lay him down on the baby scale. That didn't work. We even attempted to have me hold him and weigh us together, that still didn't work. After about fifteen minutes he noticed the scale had buttons at the top. He wanted to touch the buttons. So, he stood on the scale just to touch the buttons and we prayed it was long enough to give us his weight. IT WORKED! We had to hold him down to measure him. When it came time for his blood pressure, I told the nurse to forget it! Tell the dr. he wouldn't cooperate..ha! She agreed. Thank God!!
We had a easy ride home from Boston. Didn't get lost, and stopped for icecream!!
I can't believe I finished typing my first blog. Just to let you know, it probably took me about an hour and a half. I had to keep stopping and redirecting my little guy away from the computer.
Lastly, just want to give a shout out to all my family and friends. Thanks for coming along with me on this journey. "OUR JOURNEY". I would not have survived this year without each and everyone of you. I love you all!! I hope you enjoyed reading my very first blog. Please forgive the typos. Stay tuned....................
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