I had the treat these past two days of watching bravery in action.
For a number of years Matt has been really frightened of the dark. He is fearful of going into any room that is dimly lit. He has bolted from movie theaters, aquariums, dark streets, and so on.
For a Christmas treat, my mother took Matt and I to Sea World in San Diego for a few days. We drove down on Sunday, went to Sea World Monday and Tuesday, and drove back Tuesday after a day at Sea World.
On Monday, in addition to a number of fun activities and sea life interactions, Matt *peeked* into one of the aquariums. He stood in the doorway for a while and looked at the fish in the tanks near the door. After a while, he stood in front of the tank near the door. He was so proud of this feat! He ventured to the few tanks right by the entrance and then dashed out. But he went into a very dimly lit building and explored a bit. What a huge victory for him!
On our walk through the park, we saw a fresh water aquarium. Matt stood at the entrance way and looked in. He backed away and ran. Standing in one dark room was more than enough for that day!
Tuesday, after watching the Shamu show (during which Matt was fearful - he was not at all convinced that he would not get wet - which for some reason he was most concerned about), he asked to see the fish. We went to the sea/salt water aquarium again. He started at the tank near the entrance way. He circled the tanks near the entrance way, returning repeatedly to the tank at the front. He then started working his way down the line of tanks, deeper and deeper into the dark (although after being in the aquarium for this long period of time - I am sure that his eyes had completely adjusted to the dim lighting. Still, he knew he was in a dark building. He was facing his fear directly.).
He slowly worked his way down the whole building. He viewed most of the tanks (thankfully most people were understanding of a young boy pushing his way to the front of each exhibit. It was a really crowded day and each exhibit was filled with people.). When he exited the building, he was so proud of himself. He knew exactly what he had accomplished.
As we circled around the park, we approached the next aquarium - the fresh water aquarium. Once again, he stood at the entrance way and peeked in. He kept dashing away and returning. Then he stepped inside. He crossed the first room to look at the turtles. He then lead the exploration, pulling us from one exhibit to the next, exclaiming at what he had found and then on to the next to see what it held.
He calmly walked out of the fresh water aquarium wearing a big grin. He was ready to tackle another big challenge . He said that he wanted to see the sharks also. The shark exhibit is one in which you start in daylight, go down below into the exhibit, end up in a tube with shark around you and then walk back out into the daylight.
There was a huge crowd and a huge line at the shark exhibit. We waited in line with Matt. As we got to the entrance of the exhibit, Matt began to panic. We had him stand next to a Sea World employee who was directing the flow of people into the shark exhibit. Matt could not see the inside of the exhibit because of the crush of people. He had so wanted to peek into the shark exhibit as he had at the aquariums. But the crowd of people made that impossible.
We all decided that we would try the shark exhibit on another, less busy day.
As we left Sea World, I told Matt how proud I was of him. He told me that he *peeked* at the fish. I told him that he had looked at all of the fish and that he was very brave.
Tonight, as he got ready for bed, I repeated once again just how proud I was of how brave he had been.
It is not everyday that you get to see bravery in action.
Tuesday, December 29, 2009
Thursday, December 24, 2009
Christmas Spirit
Last year, Matt's school strongly prompted the idea of walking to school as an activity to help both the health of the world and all of the walkers' personal health. Matt was determined that he would walk to school also. The problem is that Matt does not attend his neighbor school - i.e., the school within walking distance. His school is a ten minute drive from our home. It would take us a good hour walking at Matt's pace.
So I came up with a compromise. We now park a few blocks from school and walk from that point - everyday - rain or shine. Usually this first person that Matt greets every school day is Mr. Doug, the crossing guard. We exchange morning pleasantries and continue on to school.
I purchased gifts for Matt's teachers, aides, and therapists. The Wednesday of the last week before Winter break, I carried the bag of gifts to the car. Matt was curious as to what I was carrying in the bag. I told Matt about the gifts we were giving to everyone at school who helps him. He happily told the aide at school that the gifts were for her and went to his desk to start his day.
The next day as I park the car, Matt looked out the window and exclaims, "Mr. Doug!" I agreed that I could see Mr. Doug. Matt said, "No! Where Mr. Doug gift?" Right. Mr. Doug is someone who helps Matt at school. Quickly thinking, I told Matt that I forgot it at the house, but we would bring it to Mr. Doug tomorrow. Matt hopped out of the car and yelled to Mr. Doug that I forgot his gift but we would bring it tomorrow.
That night, I packaged up a gift for Mr. Doug. Matt grabbed the package and leaped from the car the moment I parked. "Mr. Doug," he screamed, waving the package aloft. "Your gift." Mr. Doug told Matt how grateful he was for his gift and thanked him each time Matt repeats "Your gift" as we cross the street together.
Matt beamed up at me as we continued our walk to school. "Mr. Doug happy." I agreed that Mr. Doug was happy. "Matt gift Mr. Doug happy." I agree that his gift made Mr. Doug happy. Matt ponders this thought for a moment. "Bennett need gift. Gabby need gift. Vanessa need gift." (his aides from last year)
I give him a big hug. I ask him if he wants to make everyone happy. "Yep. Need Matt gift."
This year I was able to watch as Matt discovered the pleasure of giving someone a gift. While he still eagerly awaits his gifts from Santa (and the rest of us), he also understands the joy the giver receives when giving someone a gift.
So I came up with a compromise. We now park a few blocks from school and walk from that point - everyday - rain or shine. Usually this first person that Matt greets every school day is Mr. Doug, the crossing guard. We exchange morning pleasantries and continue on to school.
I purchased gifts for Matt's teachers, aides, and therapists. The Wednesday of the last week before Winter break, I carried the bag of gifts to the car. Matt was curious as to what I was carrying in the bag. I told Matt about the gifts we were giving to everyone at school who helps him. He happily told the aide at school that the gifts were for her and went to his desk to start his day.
The next day as I park the car, Matt looked out the window and exclaims, "Mr. Doug!" I agreed that I could see Mr. Doug. Matt said, "No! Where Mr. Doug gift?" Right. Mr. Doug is someone who helps Matt at school. Quickly thinking, I told Matt that I forgot it at the house, but we would bring it to Mr. Doug tomorrow. Matt hopped out of the car and yelled to Mr. Doug that I forgot his gift but we would bring it tomorrow.
That night, I packaged up a gift for Mr. Doug. Matt grabbed the package and leaped from the car the moment I parked. "Mr. Doug," he screamed, waving the package aloft. "Your gift." Mr. Doug told Matt how grateful he was for his gift and thanked him each time Matt repeats "Your gift" as we cross the street together.
Matt beamed up at me as we continued our walk to school. "Mr. Doug happy." I agreed that Mr. Doug was happy. "Matt gift Mr. Doug happy." I agree that his gift made Mr. Doug happy. Matt ponders this thought for a moment. "Bennett need gift. Gabby need gift. Vanessa need gift." (his aides from last year)
I give him a big hug. I ask him if he wants to make everyone happy. "Yep. Need Matt gift."
This year I was able to watch as Matt discovered the pleasure of giving someone a gift. While he still eagerly awaits his gifts from Santa (and the rest of us), he also understands the joy the giver receives when giving someone a gift.
Thursday, December 10, 2009
It's Christmas Time!
Matt has been walking around saying "It's Christmas time!" He has told me what he wants Santa to bring him (Hot Wheel Cars). He points out every Santa he sees (cuts out in windows, in ads, the Santa decorations we have). He is singing Christmas songs. He knows that Christmas is coming in a few weeks. He is beyond exciting about Christmas and Santa.
This is the first year he has reached this level of understanding of Christmas.
A few years ago, he thought the UPS driver was this Santa Claus guy we were telling him about because the UPS driver brought the boxes of gifts from our far flung family. Not a bad guess. At that point, Matt also became entranced with the decorated Christmas tree and our various Christmas figures: Victorian Carolers and Santa in his workshop. He gave himself the job of turning on the tree and figures. He named our boy caroler Steve. We never did figure out why or who he was naming the caroler after, but the caroler remains Steve to this day. (Sadly, the female caroler tumbled out of the attic last year and broke, so Steve is singing on his own now.)
Last year, we didn't put the gifts under the tree until after Matt went to bed on Christmas Eve. We are blessed with generous family and friends. We had a lot of packages under the tree. When he ran out of his room Christmas morning, he luckily dashed acrossed the kitchen to wake us up. I was so happy to be able to witness his awed expression when he ran into the living room and saw the tree. "Santa came," he whispered.
This year, he is anticipating Santa's arrival. He is talking about Santa coming. He is singing about Santa coming. He is seeing Santa everywhere.
It's Christmas time. And we know who is going to be one excited boy on Christmas morning!
This is the first year he has reached this level of understanding of Christmas.
A few years ago, he thought the UPS driver was this Santa Claus guy we were telling him about because the UPS driver brought the boxes of gifts from our far flung family. Not a bad guess. At that point, Matt also became entranced with the decorated Christmas tree and our various Christmas figures: Victorian Carolers and Santa in his workshop. He gave himself the job of turning on the tree and figures. He named our boy caroler Steve. We never did figure out why or who he was naming the caroler after, but the caroler remains Steve to this day. (Sadly, the female caroler tumbled out of the attic last year and broke, so Steve is singing on his own now.)
Last year, we didn't put the gifts under the tree until after Matt went to bed on Christmas Eve. We are blessed with generous family and friends. We had a lot of packages under the tree. When he ran out of his room Christmas morning, he luckily dashed acrossed the kitchen to wake us up. I was so happy to be able to witness his awed expression when he ran into the living room and saw the tree. "Santa came," he whispered.
This year, he is anticipating Santa's arrival. He is talking about Santa coming. He is singing about Santa coming. He is seeing Santa everywhere.
It's Christmas time. And we know who is going to be one excited boy on Christmas morning!
Thursday, December 3, 2009
Triennial IEP
Due to his significant development delays and disabilities, Matt is educated under an I.E.P. - an Individualized Education Program. Every three years (at 3, 6, 9, 12, 15 years old - not sure if they will have one when he is 18 - I'll worry about that closer thereto!) he has a triennial review. From what I understand, the purpose of the review is to verify if he still needs to be educated under an IEP.
As there was no question that he would still qualify for an education under an IEP, I requested that we use the opportunity to do an in-depth assessment in all areas so we can establish what he truly does know, what he truly can do and then make a plan based on that. The reason for my request was that there are still gaps in his foundation skills. For example, it did not make sense to me to focus on teaching adding and subtracting when Matt does not comprehend numbers - that two items are always two items - not as many or as high as he can count. Kelly, his OT last year, was also concerned that he was missing some of his foundation pre-writing skills. She was not sure how he could write as well as he could - given the gaps in his fine-motor skills.
We received most of the assessments before our Triennial IEP meeting. I really appreciated everyone doing that so that I could read and assimilate everything before the meeting. I have given up hoping that assessments will not upset me. Other than the doctor telling me that she was worried about Matt's delay when he was 6 months old, rarely am I surprised by anything I read in an assessment. The fact that I already know the extent of Matt's delay doesn't change the emotion kick in the teeth I feel each time I see it in black and white.
I also realized a while ago that the assessments view Matt differently than I do. I look at where he is at and focus on what we need to do next to help him progress. The assessments start at where he should be at his age and focus on the gap. I look on his current abilities and how to help him grow and development. The assessments look at his disabilities and how far behind he is. Once I realized that it was just a different perspective, that there was no factual difference, I started to recover faster. I'm still flattened but now it is only for hours instead of days.
There were some bright spots in the assessments. Matt has acquired 31 months of vocabulary since his last assessment three years ago. As speech is his most challenging areas, that was so exiting to hear. He has done so well with his gross motor development that he is being transitioned to Adaptive PE and his PT will consult with the Adaptive PE instructor.
As he is very driven to both communicate and move (walk, run, play sports, etc.), it is not surprising that those were the two areas in which he made the most progress. Unfortunately he does not have the same internal motivation to use his hands for writing or dressing, so he did not make as much progress with his fine-motor skills, but he still did improve.
Not surprisingly with the difficulties these past two years, academics were an area in which Matt was really delayed. Thankfully with his current teacher he is already making gains in academics. He is starting to read and learn his sight words. He has completely adjusted to her class. Although he has displayed some testing behavior, because she has handled the situation so well, there has not been any of the behavior problems he exhibited last year. She has seven academic goals for this year (he only had two listed last year). She also believes that Matt is going to do great in her class. If it continues as it has started, it'll be a great year.
For fine-motor, they are focusing on writing his full name and for visual motor skills (an area of weakness uncovered during the assessment progress), they are focusing on coloring and cutting shapes. (And with the OT at the clinic - Matt is working on buttons, snaps, clasps, etc. so that he'll be able to dress himself. At the moment, not being able to work buttons or snaps etc. really limits the pants he can wear to just elastic banded exercise pants. Slowly but surely he'll achieve this also!)
All in all, I think Matt is going to have a great year. Knowing that we are basing our plan for his year on what his current abilities are gives me hope that he will make great strides this year.
As there was no question that he would still qualify for an education under an IEP, I requested that we use the opportunity to do an in-depth assessment in all areas so we can establish what he truly does know, what he truly can do and then make a plan based on that. The reason for my request was that there are still gaps in his foundation skills. For example, it did not make sense to me to focus on teaching adding and subtracting when Matt does not comprehend numbers - that two items are always two items - not as many or as high as he can count. Kelly, his OT last year, was also concerned that he was missing some of his foundation pre-writing skills. She was not sure how he could write as well as he could - given the gaps in his fine-motor skills.
We received most of the assessments before our Triennial IEP meeting. I really appreciated everyone doing that so that I could read and assimilate everything before the meeting. I have given up hoping that assessments will not upset me. Other than the doctor telling me that she was worried about Matt's delay when he was 6 months old, rarely am I surprised by anything I read in an assessment. The fact that I already know the extent of Matt's delay doesn't change the emotion kick in the teeth I feel each time I see it in black and white.
I also realized a while ago that the assessments view Matt differently than I do. I look at where he is at and focus on what we need to do next to help him progress. The assessments start at where he should be at his age and focus on the gap. I look on his current abilities and how to help him grow and development. The assessments look at his disabilities and how far behind he is. Once I realized that it was just a different perspective, that there was no factual difference, I started to recover faster. I'm still flattened but now it is only for hours instead of days.
There were some bright spots in the assessments. Matt has acquired 31 months of vocabulary since his last assessment three years ago. As speech is his most challenging areas, that was so exiting to hear. He has done so well with his gross motor development that he is being transitioned to Adaptive PE and his PT will consult with the Adaptive PE instructor.
As he is very driven to both communicate and move (walk, run, play sports, etc.), it is not surprising that those were the two areas in which he made the most progress. Unfortunately he does not have the same internal motivation to use his hands for writing or dressing, so he did not make as much progress with his fine-motor skills, but he still did improve.
Not surprisingly with the difficulties these past two years, academics were an area in which Matt was really delayed. Thankfully with his current teacher he is already making gains in academics. He is starting to read and learn his sight words. He has completely adjusted to her class. Although he has displayed some testing behavior, because she has handled the situation so well, there has not been any of the behavior problems he exhibited last year. She has seven academic goals for this year (he only had two listed last year). She also believes that Matt is going to do great in her class. If it continues as it has started, it'll be a great year.
For fine-motor, they are focusing on writing his full name and for visual motor skills (an area of weakness uncovered during the assessment progress), they are focusing on coloring and cutting shapes. (And with the OT at the clinic - Matt is working on buttons, snaps, clasps, etc. so that he'll be able to dress himself. At the moment, not being able to work buttons or snaps etc. really limits the pants he can wear to just elastic banded exercise pants. Slowly but surely he'll achieve this also!)
All in all, I think Matt is going to have a great year. Knowing that we are basing our plan for his year on what his current abilities are gives me hope that he will make great strides this year.
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