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.
Wednesday, November 11, 2009
YMCA Adventures
We joined the Y when Matt was 2 years old so we could enroll him in their swimming program. Little did we know how many activities and adventures we would find there. I am not sure if every Y is as wonderful as our Y in Torrance. Our Y has been a most welcoming place with lots of different adventures for Matt to experience at various stages.
At two, we did the mommy and me swimming classes and he also did tumbling classes. The social butterfly also had a wonderful time in the child care area while Chris and I worked out.
As he got older we added to his repertory sports 'n fun (intro to various sports), basketball and safety training/baby karate while continuing the swimming classes.
It has been a treat to watch Matt and Amir and all of their peers grow and develop on the basketball court. Matt played basketball from the age of four through eight. At nine years old the kids are moved to a league in which the score is kept. After a few discussions with the director of youth athletics, we decided that we would not advance Matt to the next level (although they were most welcoming to have him try). Up to this point, his teammates have always welcomed Matt and enjoyed having him on their team. I did not think it would be fair to anyone to have him play once the score was being kept and I did not want it to come to a point that his teammates resented having him there.
That did not mean that the Y did not still have sports or activities for Matt. We are currently in Adventure Guides and enjoying that a lots. Next year, Matt is going to try out a new sport - track and field.
And there still is swimming to be mastered. Over the years Matt has progressed from sinking like a stone to beginning dog paddle. I am determined to have Matt become a procificient swimmer. There are too many pools and bodies of water out there to tempt a boy. Knowing what to do once you're in over your head is important.
We have yet to make it to the family night at the Y. I know that Matt would have fun if we could remember to go!!
I foresee a number of grand adventures still be found at our Y. I am looking forward to each of them!
At two, we did the mommy and me swimming classes and he also did tumbling classes. The social butterfly also had a wonderful time in the child care area while Chris and I worked out.
As he got older we added to his repertory sports 'n fun (intro to various sports), basketball and safety training/baby karate while continuing the swimming classes.
It has been a treat to watch Matt and Amir and all of their peers grow and develop on the basketball court. Matt played basketball from the age of four through eight. At nine years old the kids are moved to a league in which the score is kept. After a few discussions with the director of youth athletics, we decided that we would not advance Matt to the next level (although they were most welcoming to have him try). Up to this point, his teammates have always welcomed Matt and enjoyed having him on their team. I did not think it would be fair to anyone to have him play once the score was being kept and I did not want it to come to a point that his teammates resented having him there.
That did not mean that the Y did not still have sports or activities for Matt. We are currently in Adventure Guides and enjoying that a lots. Next year, Matt is going to try out a new sport - track and field.
And there still is swimming to be mastered. Over the years Matt has progressed from sinking like a stone to beginning dog paddle. I am determined to have Matt become a procificient swimmer. There are too many pools and bodies of water out there to tempt a boy. Knowing what to do once you're in over your head is important.
We have yet to make it to the family night at the Y. I know that Matt would have fun if we could remember to go!!
I foresee a number of grand adventures still be found at our Y. I am looking forward to each of them!
Thursday, November 5, 2009
Soup
A nine year old boy sitting down to eat a bowl of minestrone-type soup isn't an extraordinary thing for most households. For us, it is a pinnacle of success after a long, hard fought journey.
The journey began at birth. Matt had difficulty drinking from a bottle. The nurses in the NICU found a type of nipple that basically caused the milk to flow into his mouth with little effort on his part. He started with tiny amounts in the bottle which he slowly learned to drink without choking. As he grasped the drink without choking skill, they were able to put an ounce and then two ounces in at a time.
We attempted breastfeeding for a number of weeks, but it just never worked. At the time we did not have a complete picture of all of the challenges Matt had with motor planning. But it was clear that breastfeeding wasn't going to be in the picture for him.
It took a while, but Matt slowly worked up from a no-effort nipple to more standard ones that he had to work to get a drink. Who knew that having to coordinate all of those mouth muscles to eat was so important for muscle development beyond just eating but for speaking in the future!
Matt did surprisingly well with the beginning solids (basically just liquid rice cereal) but really struggled with true solids. I'll never forget him working with Sally and literally choking down tiny cubes of mango. She taught us how to help him learn to use his mouth to eat. We became proficient at dealing with him gagging and choking - slapping him on the back to dislodge a stuck piece of food or sticking our fingers into his mouth/throat to retrieve what he was choking on or ripping him out of the high chair, turning him upside down, dislodging whatever and returning him to his chair and trying again.
Amazingly, almost choking didn't seem to put Matt off of his food. He'd happily put the next bit of food into his mouth moments after choking. Which was a good thing as it happen every time at the beginning.
Once he was able to handle soft foods like mangoes and bananas, we had other challenges to overcome (beyond having him learn how to eat crunchier foods like raw carrots - which was a challenge on its own!). He wasn't able to feel how much food was in his mouth, therefore he would over stuff it and gag. He also had a high gag reflects so he would easily gag (from food, coughing, anything!) and end up losing the contents of his stomach. (He didn't lose that high gag reflects for years.)
Sally and the early childhood development school had a number of tricks and tools to help him overcome those issues. Before eating, we would ice his mouth (to bring more awareness to it) and throughout the day we would have him chew on all sorts of different things - knobbly things, vibrating things, tube things, and more (I am sure that all of these tools have official names - but knobbly thing works, right?!!).
We would all try to keep an eye on him constantly while he was eating - to get him to slow down and not to over stuff his mouth. Even with constant valiance, he'd still manage to over stuff it on regular basis - causing himself to gag and often lose the contents of his stomach (fun, fun, fun).
Over the years he made progress. Around six or seven, his high gag reflect lessened (I think he'll always have a hair trigger response - but it is sooo much better!!). To this day he'll still cram his mouth overly full, but he is getting much better.
Next challenge was the same that all kids have - how to use a fork and spoon (LOL - we'll work on cutting and knives at some point in the future!). It has taken years, but Matt has conquered using silverware to get the food from his bowl/plate to his mouth. He's learned to hold his fork and spoon level when bringing it to him - so as not to slip everything everywhere! Just this year he start to eat bowls of cereal with milk in them (he had a hard time coordinating liquids and solids on his spoon at the same time and working out how to eat the solid and liquid at the same type without choking - but he's enjoyed eating dry cereal for years!).
Just this week he sat down to his first bowl of minestrone type soup (that liquid and solid on the spoon at the same time issue) and ate it like a champ (not saying there wasn't a bit of a mess - but we'll take a messy success any day!!).
Matt has experienced all sorts of triumphs since he began his journey. This week's triumph was eating a bowl of soup. Who knows what next week's triumph will be!
The journey began at birth. Matt had difficulty drinking from a bottle. The nurses in the NICU found a type of nipple that basically caused the milk to flow into his mouth with little effort on his part. He started with tiny amounts in the bottle which he slowly learned to drink without choking. As he grasped the drink without choking skill, they were able to put an ounce and then two ounces in at a time.
We attempted breastfeeding for a number of weeks, but it just never worked. At the time we did not have a complete picture of all of the challenges Matt had with motor planning. But it was clear that breastfeeding wasn't going to be in the picture for him.
It took a while, but Matt slowly worked up from a no-effort nipple to more standard ones that he had to work to get a drink. Who knew that having to coordinate all of those mouth muscles to eat was so important for muscle development beyond just eating but for speaking in the future!
Matt did surprisingly well with the beginning solids (basically just liquid rice cereal) but really struggled with true solids. I'll never forget him working with Sally and literally choking down tiny cubes of mango. She taught us how to help him learn to use his mouth to eat. We became proficient at dealing with him gagging and choking - slapping him on the back to dislodge a stuck piece of food or sticking our fingers into his mouth/throat to retrieve what he was choking on or ripping him out of the high chair, turning him upside down, dislodging whatever and returning him to his chair and trying again.
Amazingly, almost choking didn't seem to put Matt off of his food. He'd happily put the next bit of food into his mouth moments after choking. Which was a good thing as it happen every time at the beginning.
Once he was able to handle soft foods like mangoes and bananas, we had other challenges to overcome (beyond having him learn how to eat crunchier foods like raw carrots - which was a challenge on its own!). He wasn't able to feel how much food was in his mouth, therefore he would over stuff it and gag. He also had a high gag reflects so he would easily gag (from food, coughing, anything!) and end up losing the contents of his stomach. (He didn't lose that high gag reflects for years.)
Sally and the early childhood development school had a number of tricks and tools to help him overcome those issues. Before eating, we would ice his mouth (to bring more awareness to it) and throughout the day we would have him chew on all sorts of different things - knobbly things, vibrating things, tube things, and more (I am sure that all of these tools have official names - but knobbly thing works, right?!!).
We would all try to keep an eye on him constantly while he was eating - to get him to slow down and not to over stuff his mouth. Even with constant valiance, he'd still manage to over stuff it on regular basis - causing himself to gag and often lose the contents of his stomach (fun, fun, fun).
Over the years he made progress. Around six or seven, his high gag reflect lessened (I think he'll always have a hair trigger response - but it is sooo much better!!). To this day he'll still cram his mouth overly full, but he is getting much better.
Next challenge was the same that all kids have - how to use a fork and spoon (LOL - we'll work on cutting and knives at some point in the future!). It has taken years, but Matt has conquered using silverware to get the food from his bowl/plate to his mouth. He's learned to hold his fork and spoon level when bringing it to him - so as not to slip everything everywhere! Just this year he start to eat bowls of cereal with milk in them (he had a hard time coordinating liquids and solids on his spoon at the same time and working out how to eat the solid and liquid at the same type without choking - but he's enjoyed eating dry cereal for years!).
Just this week he sat down to his first bowl of minestrone type soup (that liquid and solid on the spoon at the same time issue) and ate it like a champ (not saying there wasn't a bit of a mess - but we'll take a messy success any day!!).
Matt has experienced all sorts of triumphs since he began his journey. This week's triumph was eating a bowl of soup. Who knows what next week's triumph will be!
Wednesday, November 4, 2009
Dribble for the Cure at UCLA
Matt and Amir, his best friend (since they were both 2 years old!) , did Dribble for the Cure at UCLA to raise funds for Pediatric Cancer Research Foundation. Well, I did the fundraising by asking if anyone at my office would like to sponsor Matt. Six of my coworkers stepped forward and donated money to him (well, to the charity!).
I had no idea how Matt would do. In the past Matt has gotten overwhelmed by the crowds and the noise at the walk for charity type of events. At the charity walk near my office earlier in the year, Matt ran from the noise and crowd at the start of the walk but did stand out in front of my office and cheer on the crowd as they passed us. Once they passed us, he refused to go back to the event (too noisy and chaotic for him) so we just went home.
When Kerri told me about Dribble for the Cure and asked us to join them, I warned her that she and Amir may end up doing the course without us - but we would deal with whatever happened when it happened. While driving to UCLA, Matt and I talked about what we thought the event would be like. We strategized ideas of how he could handle the noise - like covering his ears - and what we should do about the crowds of people - he should stay close to me. I told him that I thought we were going to have a great time.
Matt and I arrived before Kerri and Amir. As directed, we brought a basketball from home for Matt to use on the course. While I waited in line to register us, he practiced dribbling and passes against a wall (a number of other boys were doing the same so I just kept an eye on him and let him be). He was so busy with his basketball that he did not notice the crush of people around us.
His fundraising level awarded him a new basketball. Very exciting. We walked back to the car to put away the old basketball from home. Matt did not let go of his new basketball.
Our timing was perfect. As we were leaving the garage, Kerri and Amir arrived. I took the boys to a quiet corner of the plaza to practice dribbling and passing while Kerri registered. Kerri realized that I missed a whole section of the signing in portion and hadn't yet received my gift bags and t-shirts. Thank goodness for Kerri's awareness! Would have hated to miss out on our goodies and new t-shirts!
We stayed in our quiet corner during the before the walk speeches and allowed the crush of people to start and the band to finish playing before we joined the walk. We were the true tail of the walk. BUT Matt did the whole course!! He dribbled his new basketball the whole way. Amir didn't want to go at Matt's slower pace so he and Kerri would race ahead at Amir's pace and then waited for us at different points along the course. They would join us for a time and then off Amir would go.
The course ended at the gym. As we were the last of the walkers, a portion of the gym was filled with the other walkers. Matt did a great job handling the noise and crowd. He followed Kerri and Amir across the gym floor and up the stairs. We sat above the bulk of the people.
After the speeches and while the majority of the people were leaving the gym, we let the boys join the crowd of kids clusters around the basketball hoops and attempt to shot baskets. Amir made a good number of his shots. Matt had fun trying.
After a lunch on the campus, we went our separate ways. Amir had basketball practice and I had one tired boy on my hands. After all, he did the whole walk, he successfully handled the mass of people, and he spent time with his best friend. It was a full, fun day.
I had no idea how Matt would do. In the past Matt has gotten overwhelmed by the crowds and the noise at the walk for charity type of events. At the charity walk near my office earlier in the year, Matt ran from the noise and crowd at the start of the walk but did stand out in front of my office and cheer on the crowd as they passed us. Once they passed us, he refused to go back to the event (too noisy and chaotic for him) so we just went home.
When Kerri told me about Dribble for the Cure and asked us to join them, I warned her that she and Amir may end up doing the course without us - but we would deal with whatever happened when it happened. While driving to UCLA, Matt and I talked about what we thought the event would be like. We strategized ideas of how he could handle the noise - like covering his ears - and what we should do about the crowds of people - he should stay close to me. I told him that I thought we were going to have a great time.
Matt and I arrived before Kerri and Amir. As directed, we brought a basketball from home for Matt to use on the course. While I waited in line to register us, he practiced dribbling and passes against a wall (a number of other boys were doing the same so I just kept an eye on him and let him be). He was so busy with his basketball that he did not notice the crush of people around us.
His fundraising level awarded him a new basketball. Very exciting. We walked back to the car to put away the old basketball from home. Matt did not let go of his new basketball.
Our timing was perfect. As we were leaving the garage, Kerri and Amir arrived. I took the boys to a quiet corner of the plaza to practice dribbling and passing while Kerri registered. Kerri realized that I missed a whole section of the signing in portion and hadn't yet received my gift bags and t-shirts. Thank goodness for Kerri's awareness! Would have hated to miss out on our goodies and new t-shirts!
We stayed in our quiet corner during the before the walk speeches and allowed the crush of people to start and the band to finish playing before we joined the walk. We were the true tail of the walk. BUT Matt did the whole course!! He dribbled his new basketball the whole way. Amir didn't want to go at Matt's slower pace so he and Kerri would race ahead at Amir's pace and then waited for us at different points along the course. They would join us for a time and then off Amir would go.
The course ended at the gym. As we were the last of the walkers, a portion of the gym was filled with the other walkers. Matt did a great job handling the noise and crowd. He followed Kerri and Amir across the gym floor and up the stairs. We sat above the bulk of the people.
After the speeches and while the majority of the people were leaving the gym, we let the boys join the crowd of kids clusters around the basketball hoops and attempt to shot baskets. Amir made a good number of his shots. Matt had fun trying.
After a lunch on the campus, we went our separate ways. Amir had basketball practice and I had one tired boy on my hands. After all, he did the whole walk, he successfully handled the mass of people, and he spent time with his best friend. It was a full, fun day.
Tuesday, November 3, 2009
Halloween
What a fun Halloween!
Since Matt was so nervous about wearing his Harry Potter robe and glasses, I wasn't sure if he'd just be carrying his Harry Potter wand as a costume while trick or treating.
For two months Matt would pick up his Harry Potter robe, yell and toss it away (oh the drama!). I didn't make a big deal out of it. I left the picture that came with the costume on his dresser. I let him put his robe where he wanted it to be at that moment (in the dresser, over a chair, on top of his dresser, on top of his toy box). Every few days he would pick it up, examine it, yell and toss it to a new location.
It was love at first sight with the wand - so I knew we'd at least have that portion of his costume - if nothing else!
I knew the glasses were a long shot. Matt really doesn't like to wear anything on his head. Occasionally I'll be able to convince him to wear a hat. For example, a baseball cap is part of the baseball uniform; therefore EVERYONE who plays wears a hat. When playing for his baseball team, he'll wear his hat. I have sunglasses for him in my purse. Every once in a while, he'll put them on for a little while. Like everything, we make progress slowly but surely. But for a Halloween costume, as opposed to safety, it is not worth the fight to make him wear the glasses portion of his costume. After all, Halloween is supposed to be fun!!
He did put his glasses on for the pictures - both at school and at home. He wore his robe for the pictures at school, but didn't wear his robe - only carried his wand - for the school's Halloween parade. While trick or treating, he carried his glasses in his pumpkin - close! But he wore his robe while trick or treating!! He had on his robe, carried his wand, glow stick and pumpkin (at least until the pumpkin got heavy with all of his candy - then I got to carry it!!).
For trick or treating, Chris took him around the neighborhood and then I took him to Janine's. He really wanted to trick or treat with Aunt Janine again like he did last year. After all, Aunt Janine can scary away the ghosts!! (Imagination - a blessing and a cure!!).
One of the streets near Janine's really gets into Halloween. Amazingly decorated homes! Janine told Matt about each home we were looking at but let Matt decide if he wanted to approach the door. He avoided the houses that were too frightening for him. He trick or treated for over an hour with Janine and me. He was in a great mood the whole time. I think he felt in control since he was the one deciding which houses he'd approach.
When we returned to Janine's house, he watch the baseball game and helped give candy to the kids for another hour. I think he may have enjoyed that even more than trick or treating and getting the candy for himself!!
Janine could not believe how much better he was about trick or treating this year compared to last year. While he was still nervous and some stuff frightened him, he had fun and talked to everyone out on the streets with us.
All in all, Halloween was a complete success!!
Since Matt was so nervous about wearing his Harry Potter robe and glasses, I wasn't sure if he'd just be carrying his Harry Potter wand as a costume while trick or treating.
For two months Matt would pick up his Harry Potter robe, yell and toss it away (oh the drama!). I didn't make a big deal out of it. I left the picture that came with the costume on his dresser. I let him put his robe where he wanted it to be at that moment (in the dresser, over a chair, on top of his dresser, on top of his toy box). Every few days he would pick it up, examine it, yell and toss it to a new location.
It was love at first sight with the wand - so I knew we'd at least have that portion of his costume - if nothing else!
I knew the glasses were a long shot. Matt really doesn't like to wear anything on his head. Occasionally I'll be able to convince him to wear a hat. For example, a baseball cap is part of the baseball uniform; therefore EVERYONE who plays wears a hat. When playing for his baseball team, he'll wear his hat. I have sunglasses for him in my purse. Every once in a while, he'll put them on for a little while. Like everything, we make progress slowly but surely. But for a Halloween costume, as opposed to safety, it is not worth the fight to make him wear the glasses portion of his costume. After all, Halloween is supposed to be fun!!
He did put his glasses on for the pictures - both at school and at home. He wore his robe for the pictures at school, but didn't wear his robe - only carried his wand - for the school's Halloween parade. While trick or treating, he carried his glasses in his pumpkin - close! But he wore his robe while trick or treating!! He had on his robe, carried his wand, glow stick and pumpkin (at least until the pumpkin got heavy with all of his candy - then I got to carry it!!).
For trick or treating, Chris took him around the neighborhood and then I took him to Janine's. He really wanted to trick or treat with Aunt Janine again like he did last year. After all, Aunt Janine can scary away the ghosts!! (Imagination - a blessing and a cure!!).
One of the streets near Janine's really gets into Halloween. Amazingly decorated homes! Janine told Matt about each home we were looking at but let Matt decide if he wanted to approach the door. He avoided the houses that were too frightening for him. He trick or treated for over an hour with Janine and me. He was in a great mood the whole time. I think he felt in control since he was the one deciding which houses he'd approach.
When we returned to Janine's house, he watch the baseball game and helped give candy to the kids for another hour. I think he may have enjoyed that even more than trick or treating and getting the candy for himself!!
Janine could not believe how much better he was about trick or treating this year compared to last year. While he was still nervous and some stuff frightened him, he had fun and talked to everyone out on the streets with us.
All in all, Halloween was a complete success!!
Thursday, October 22, 2009
High Pain Tolerance/Sensory Integration
Wouldn’t it be wonderful to live in a world in which you didn’t feel pain? Before I had Matt, I would have answered yes.
Matt has an incredibly high tolerance to pain. When he was a beginner walker, he would crash into the wall, get an egg sized bump on his head and never feel the pain. That is when I learned that we all feel pain for a reason: to stop doing harm to ourselves! For example, if it doesn’t hurt when you walk into a wall, you’ll not quickly learn to stop doing it.
Matt did and does feel pain. He certainly squawked from pain when Sally first started working with him. But he was oblivious to things that would stop most of us in our tracks, like walking full speed into a wall.
Although we are not sure why Matt started life with this high pain tolerance, his OT believed he had Sensory Integration Disorder as that would explain that and many of his emerging, worrisome behaviors and reactions to the world.
Having been given yet another piece of the puzzle, I went off to research and learn. In essence, Sensory Integration Disorder (also called Sensory Integration Dysfunction, Dysfunction of Sensory Integration and Sensory Process Disorder) is the neurological inability to integrate properly the seven (yes, there are seven!) senses. These include sight, hearing, taste, smell, touch, proprioception and balance/coordination (vestibular sense).
We all come into the world needing to learn how to integrate the sensory information bombarding us constantly. Unfortunately, it seemed that Matt was not integrating the sensory information as he should. Beyond his high pain tolerance, some of the other behaviors believed to be linked to his sensory integration disorder are his hand flapping, batting at his mouth, need for movement – like spinning, tossing things in the air, and toe walking.
His OT also told us that while all of these behaviors are the behaviors exhibited by some children with autism that Matt does not have autism and to not let anyone try to tell us he has it. All of his other doctors agreed with her assessment regarding autism that although his behavior was autistic-like that he was not autistic.
With lots of therapy and work, some of the behaviors, like toe walking, have disappeared. And yet others remain. When excited, overwhelmed and/or tired, Matt will still bat at his mouth, flap his hand and/or spin (and tune out). Everyday he’ll attempt to find an unobserved bit of floor space, bed or couch in an empty room or somewhere we can’t see him throw a ball or toy in the air repeatedly. He knows if we see him doing this activity, we will make him stop. Hopefully there will come a point at which he no longer craves these movements. Until we reach that time, we’ll continue to redirect him to a more productive sensation seeking solution, like playing catch with us, that keeps him connected to the world while still providing him the stimulation he wants.
Matt has an incredibly high tolerance to pain. When he was a beginner walker, he would crash into the wall, get an egg sized bump on his head and never feel the pain. That is when I learned that we all feel pain for a reason: to stop doing harm to ourselves! For example, if it doesn’t hurt when you walk into a wall, you’ll not quickly learn to stop doing it.
Matt did and does feel pain. He certainly squawked from pain when Sally first started working with him. But he was oblivious to things that would stop most of us in our tracks, like walking full speed into a wall.
Although we are not sure why Matt started life with this high pain tolerance, his OT believed he had Sensory Integration Disorder as that would explain that and many of his emerging, worrisome behaviors and reactions to the world.
Having been given yet another piece of the puzzle, I went off to research and learn. In essence, Sensory Integration Disorder (also called Sensory Integration Dysfunction, Dysfunction of Sensory Integration and Sensory Process Disorder) is the neurological inability to integrate properly the seven (yes, there are seven!) senses. These include sight, hearing, taste, smell, touch, proprioception and balance/coordination (vestibular sense).
We all come into the world needing to learn how to integrate the sensory information bombarding us constantly. Unfortunately, it seemed that Matt was not integrating the sensory information as he should. Beyond his high pain tolerance, some of the other behaviors believed to be linked to his sensory integration disorder are his hand flapping, batting at his mouth, need for movement – like spinning, tossing things in the air, and toe walking.
His OT also told us that while all of these behaviors are the behaviors exhibited by some children with autism that Matt does not have autism and to not let anyone try to tell us he has it. All of his other doctors agreed with her assessment regarding autism that although his behavior was autistic-like that he was not autistic.
With lots of therapy and work, some of the behaviors, like toe walking, have disappeared. And yet others remain. When excited, overwhelmed and/or tired, Matt will still bat at his mouth, flap his hand and/or spin (and tune out). Everyday he’ll attempt to find an unobserved bit of floor space, bed or couch in an empty room or somewhere we can’t see him throw a ball or toy in the air repeatedly. He knows if we see him doing this activity, we will make him stop. Hopefully there will come a point at which he no longer craves these movements. Until we reach that time, we’ll continue to redirect him to a more productive sensation seeking solution, like playing catch with us, that keeps him connected to the world while still providing him the stimulation he wants.
Genetic Testing
The doctors knew that early in my pregnancy, somewhere between the tenth and eighteenth week, something had gone wrong with the development of Matt’s heart. Matt’s pediatrician suggested that we have him see a geneticist to find out if he had an underlying syndrome that would explain what happened to his heart and perhaps give us an idea of what the future held for him.
Off we went to UCLA to have them draw more blood from Matt. Matt ended up being seen by the Chief of Genetics at UCLA. They tested him for a number of different syndromes. All of the tests came back negative. The geneticist told us that it did not mean that Matt did not have some syndrome, but he did not have any of the known syndromes.
The field of genetics is exploding with knowledge and growth so at some point in the future an as-yet-unknown syndrome could be discovered and we might learn that Matt has that yet-to-be-discovered syndrome. Or he could have something that only he has, something unique to him. Or it could have been caused by something else, and he doesn't have any syndrome at all.
We all know that something went wrong. We just don’t know what caused it. We may find out at some point in the future or may never find it out.
For a while the lack of an answer really bothered me. Then I decided that no one knew what Matt’s future would be. Therefore, I would just continue to focus on helping Matt reach the best future he could have. The lack of information changed nothing. I still had my mission in front of me: help Matt reach his potential.
And so our journey continued.
Off we went to UCLA to have them draw more blood from Matt. Matt ended up being seen by the Chief of Genetics at UCLA. They tested him for a number of different syndromes. All of the tests came back negative. The geneticist told us that it did not mean that Matt did not have some syndrome, but he did not have any of the known syndromes.
The field of genetics is exploding with knowledge and growth so at some point in the future an as-yet-unknown syndrome could be discovered and we might learn that Matt has that yet-to-be-discovered syndrome. Or he could have something that only he has, something unique to him. Or it could have been caused by something else, and he doesn't have any syndrome at all.
We all know that something went wrong. We just don’t know what caused it. We may find out at some point in the future or may never find it out.
For a while the lack of an answer really bothered me. Then I decided that no one knew what Matt’s future would be. Therefore, I would just continue to focus on helping Matt reach the best future he could have. The lack of information changed nothing. I still had my mission in front of me: help Matt reach his potential.
And so our journey continued.
Friday, October 9, 2009
Tears of Laughter
In one of my favorite pictures of Matt, he is sitting in the kitchen, obviously in the midst of a belly laugh, with a tear drop glistening on his cheek.
Tears tracking down his cheek was not an unusual sight. I mentioned it to his pediatrician at one of his early appointment. She told me that one of his eye ducts was not open and that we'd watch it. If it was still unopened by his first birthday, she'd have him see an eye doctor. So, after his first birthday, we saw the eye doctor and Matt was subsequently scheduled for a minor eye surgery for when he was eighteen months to open the eye duct.
While obviously not as serious as heart surgery, any time you are put under there is a risk. I gave both the eye doctor and anesthesiologist Matt's medical history. I remember being very calm while I waited for them to finish with Matt.
The eye doctor came into the waiting room with a very stern expression on his face. I had a moment of pure fear while I waited for him to give me obviously terrible news. I remember thinking I had relaxed and let my defenses drop and was going to be punished for that. The doctor sat next to me and told me that the procedure had gone fine but he needed to talk to me.
Did I realize that because Matt had had heart surgery that before Matt had any invasive procedure, including seeing a dentist, that he had to have a prophylactic? I slowly nodded my head. Matt's cardiologist had told me that before he sees a dentist he'll have to take an antibiotic but as he did not have many teeth Matt had yet to see a dentist. The doctor nodded to me and said that it is more than just seeing the dentist, for any invasive procedure, including the procedure that Matt had just undertaken, Matt would need a prophylactic prior to the procedure.
The eye doctor told me that luckily the anesthesiologist has spoken to me directly before the procedure and thus knew that Matt needed a prophylactic and delayed the procedure until after it had been administered. The eye doctor told me that upon hearing Matt's medical history that any doctor or dentist who does work on Matt SHOULD know that they needed to make sure he was so protected before they do anything to him, but that I shouldn't assume they would know. For example, I had told the eye doctor about Matt's heart surgery while giving him Matt's medical history but the eye doctor had not remembered that such a patient needed a prophylactic. That as his mother, I should make sure to directly inform each and everyone of that fact.
The incident shook up both the doctor and me. I also took his advise to heart and have made it my responsibility to inform everyone of his need of a prophylactic before any invasive procedure, like teeth cleaning.
Tears tracking down his cheek was not an unusual sight. I mentioned it to his pediatrician at one of his early appointment. She told me that one of his eye ducts was not open and that we'd watch it. If it was still unopened by his first birthday, she'd have him see an eye doctor. So, after his first birthday, we saw the eye doctor and Matt was subsequently scheduled for a minor eye surgery for when he was eighteen months to open the eye duct.
While obviously not as serious as heart surgery, any time you are put under there is a risk. I gave both the eye doctor and anesthesiologist Matt's medical history. I remember being very calm while I waited for them to finish with Matt.
The eye doctor came into the waiting room with a very stern expression on his face. I had a moment of pure fear while I waited for him to give me obviously terrible news. I remember thinking I had relaxed and let my defenses drop and was going to be punished for that. The doctor sat next to me and told me that the procedure had gone fine but he needed to talk to me.
Did I realize that because Matt had had heart surgery that before Matt had any invasive procedure, including seeing a dentist, that he had to have a prophylactic? I slowly nodded my head. Matt's cardiologist had told me that before he sees a dentist he'll have to take an antibiotic but as he did not have many teeth Matt had yet to see a dentist. The doctor nodded to me and said that it is more than just seeing the dentist, for any invasive procedure, including the procedure that Matt had just undertaken, Matt would need a prophylactic prior to the procedure.
The eye doctor told me that luckily the anesthesiologist has spoken to me directly before the procedure and thus knew that Matt needed a prophylactic and delayed the procedure until after it had been administered. The eye doctor told me that upon hearing Matt's medical history that any doctor or dentist who does work on Matt SHOULD know that they needed to make sure he was so protected before they do anything to him, but that I shouldn't assume they would know. For example, I had told the eye doctor about Matt's heart surgery while giving him Matt's medical history but the eye doctor had not remembered that such a patient needed a prophylactic. That as his mother, I should make sure to directly inform each and everyone of that fact.
The incident shook up both the doctor and me. I also took his advise to heart and have made it my responsibility to inform everyone of his need of a prophylactic before any invasive procedure, like teeth cleaning.
Healthy Enough To Get Sick
For the first fifteen months of Matt's life, he was not allowed to get sick. The reason for this was with his weakened heart, even a cold could kill him. To this day, he is not allowed to get the flu and has received his flu shots since he was a tiny baby. While the flu will always be potentially deadly for him, at birth even the sniffles were.
We adapted our lives to ensure that Matt did not get sick. No one feeling even poorly was allowed to visit. Chris' mother even postpone a planned visit when she woke the day she was to fly and realized that she had a cold. As frustrating as it was for her to delay visiting her grandbaby, she understood that the risk was too high for her to even come into the house.
Instead of the daycare we had planned to enroll Matt in, Chris left his job and become a stay-at-home parent. Daycare was completely out of the question. We had considered hiring a nanny but ultimately decided that having one of us stay with Matt was the best choice.
Chris and Matt did get out of the house. On clear days, Chris would take Matt out in the stroller. As Matt got bigger and was able to hold himself up, Chris would take Matt to the park and push him on the baby swing - one of Matt's favorite activities. Chris did not have Matt interact with the other kids at the park. Just could not risk him getting sick.
A number of our friends have children around Matt's age. While they let us know of the times they were meeting at a local park or having a play date at someone's house, one of the kids or babies always seemed to be sick, so we would not join them. While Chris and I missed seeing our friends and Chris chaffed a bit in his new life of almost isolation, Matt, not knowing another life, enjoyed his days with Chris and evenings and weekends with me.
One of the few places Chris and Matt would visit regularly where Chris could have a bit of adult interaction was a local cafe. The wait staff knew Matt's situation, so they'd make sure that he and Chris were not seated near anyone. To this day, it is one of their favorite places to dine and they are treated almost like family by the whole staff.
At Matt's fifteen month check up with his cardiologist, she was happy to report that he was healthy enough and strong enough to be able to survive getting a cold. In fact, since he was a bit delayed in building his immune system since we have kept him from any disease that she would be okay with him getting a cold every month - which is exactly what he did for the next few years!!
We had been given a get out of jail free card. Matt was able to go to birthday parties, visit friends, go to the park and play with other kids and get sick. Who would have thought that the news that he could get sick would have been so wonderful.
The news also meant that he would be able to attend an early childhood development center - which is what he did at eighteen months old - starting at two days a week and building up to five days a week. He did miss days because he was sick - he sure seemed determined to follow doctor's order by getting a cold at least once every month - but he was well often enough to start to learn exciting new things, like sign language, the routine of a classroom, and the joys of classmates.
Mind you, I was also equally excited when years later, he had his first month without a cold!! And now his immune system is strong enough that he goes months between colds. It has been a long and interesting journey to reach this point of health!
We adapted our lives to ensure that Matt did not get sick. No one feeling even poorly was allowed to visit. Chris' mother even postpone a planned visit when she woke the day she was to fly and realized that she had a cold. As frustrating as it was for her to delay visiting her grandbaby, she understood that the risk was too high for her to even come into the house.
Instead of the daycare we had planned to enroll Matt in, Chris left his job and become a stay-at-home parent. Daycare was completely out of the question. We had considered hiring a nanny but ultimately decided that having one of us stay with Matt was the best choice.
Chris and Matt did get out of the house. On clear days, Chris would take Matt out in the stroller. As Matt got bigger and was able to hold himself up, Chris would take Matt to the park and push him on the baby swing - one of Matt's favorite activities. Chris did not have Matt interact with the other kids at the park. Just could not risk him getting sick.
A number of our friends have children around Matt's age. While they let us know of the times they were meeting at a local park or having a play date at someone's house, one of the kids or babies always seemed to be sick, so we would not join them. While Chris and I missed seeing our friends and Chris chaffed a bit in his new life of almost isolation, Matt, not knowing another life, enjoyed his days with Chris and evenings and weekends with me.
One of the few places Chris and Matt would visit regularly where Chris could have a bit of adult interaction was a local cafe. The wait staff knew Matt's situation, so they'd make sure that he and Chris were not seated near anyone. To this day, it is one of their favorite places to dine and they are treated almost like family by the whole staff.
At Matt's fifteen month check up with his cardiologist, she was happy to report that he was healthy enough and strong enough to be able to survive getting a cold. In fact, since he was a bit delayed in building his immune system since we have kept him from any disease that she would be okay with him getting a cold every month - which is exactly what he did for the next few years!!
We had been given a get out of jail free card. Matt was able to go to birthday parties, visit friends, go to the park and play with other kids and get sick. Who would have thought that the news that he could get sick would have been so wonderful.
The news also meant that he would be able to attend an early childhood development center - which is what he did at eighteen months old - starting at two days a week and building up to five days a week. He did miss days because he was sick - he sure seemed determined to follow doctor's order by getting a cold at least once every month - but he was well often enough to start to learn exciting new things, like sign language, the routine of a classroom, and the joys of classmates.
Mind you, I was also equally excited when years later, he had his first month without a cold!! And now his immune system is strong enough that he goes months between colds. It has been a long and interesting journey to reach this point of health!
Friday, September 18, 2009
Apraxia
After Matt's ABR confirmed that Matt could hear, Matt's audiologist referred us to a speech and language pathologist (SLP) so we could uncover the reason for Matt's lacked of speech. Another angel enter our life, Donna, Matt's speech therapist from UCLA. Donna evaluated Matt and discovered that Matt had a profound speech disorder: apraxia of speech (AOS).
Here is a definition of apraxia: Childhood Apraxia of Speech (CAS) include inconsistent articulatory errors, groping oral movements to locate the correct articulatory position, and increasing errors with increasing word and phrase length. AOS often co-occurs with Oral Apraxia (during both speech and non-speech movements) and Limb Apraxia.
Apraxia is a neurological disorder characterized by loss of the ability to execute or carry out learned purposeful movements, despite having the desire and the physical ability to perform the movements. It is a disorder of motor planning. Childhood Apraxia of Speech (CAS) presents in children who are unable to execute speech movements because of motor planning and coordination problems.
What it meant in reality for Matt - it took him YEARS to be able to talk. Donna, his UCLA SLP, told us that until he said his first word, no one would know if he would ever speak. He didn't say his first word until he was 25 months. But at least he was able to talk eventually. Not all children with this disorder do.
It was ultimately determined that Matt had global apraxia which caused difficulties with eating, speaking, walking, and more. Basically, it impacts everything he does that involves voluntary muscle use (as opposed to involuntary - that his body does on its own - like breathing and heart beating). A true challenge of a disorder.
I researched the disorder and found some information about supplements that seemed to help other children with this disorder - fish oil - or more specifically - essential fatty acids found in fish oil (and other things). Fish oil also seems to be a heart healthy supplements. Figuring that it might help and wouldn't hurt (my standard for all of the therapies, traditional and non traditional, that we've tried with Matt), we started him on fish oil.
Donna also suggested that music therapy might help him which he loved.
Armed with more information and suggested therapies, exercises, and supplements, we began the uphill battle to help Matt learn how to speak.
We also had another piece of the puzzle that was Matt. Each piece of the puzzle helps us plan a strategy which will enable Matt to achieve his own personal potential.
Here is a definition of apraxia: Childhood Apraxia of Speech (CAS) include inconsistent articulatory errors, groping oral movements to locate the correct articulatory position, and increasing errors with increasing word and phrase length. AOS often co-occurs with Oral Apraxia (during both speech and non-speech movements) and Limb Apraxia.
Apraxia is a neurological disorder characterized by loss of the ability to execute or carry out learned purposeful movements, despite having the desire and the physical ability to perform the movements. It is a disorder of motor planning. Childhood Apraxia of Speech (CAS) presents in children who are unable to execute speech movements because of motor planning and coordination problems.
What it meant in reality for Matt - it took him YEARS to be able to talk. Donna, his UCLA SLP, told us that until he said his first word, no one would know if he would ever speak. He didn't say his first word until he was 25 months. But at least he was able to talk eventually. Not all children with this disorder do.
It was ultimately determined that Matt had global apraxia which caused difficulties with eating, speaking, walking, and more. Basically, it impacts everything he does that involves voluntary muscle use (as opposed to involuntary - that his body does on its own - like breathing and heart beating). A true challenge of a disorder.
I researched the disorder and found some information about supplements that seemed to help other children with this disorder - fish oil - or more specifically - essential fatty acids found in fish oil (and other things). Fish oil also seems to be a heart healthy supplements. Figuring that it might help and wouldn't hurt (my standard for all of the therapies, traditional and non traditional, that we've tried with Matt), we started him on fish oil.
Donna also suggested that music therapy might help him which he loved.
Armed with more information and suggested therapies, exercises, and supplements, we began the uphill battle to help Matt learn how to speak.
We also had another piece of the puzzle that was Matt. Each piece of the puzzle helps us plan a strategy which will enable Matt to achieve his own personal potential.
Wednesday, September 9, 2009
Bat Ears
Reviewing videos of Matt as a baby, one thing that hits you is how quiet he is. Oh, he laughed - loved to hear him giggle. His screaming was loud enough for our neighbors to hear his unhappiness.
He could make noise but he hardly babbled, cooed, garbled or made any of the beginning language sounds with which most babies address their world.
In the midst of our day to day life with him, we never noticed just how quiet he was. His doctor did notice though and sent us to see an audiologist.
Matt screamed as if the earphones were on fire when the audiologist attempted to put them on his head. Plan B - we were sent to a dimly lit room. In two corners were glass cases each in which housed a large stuffed animal. One was a monkey with cymbals and one an elephant.
The doctor had me hold Matt in my lap. He showed us how the monkey and elephant each made noise. He explained that he would be in the other room watching Matt's reactions to the noises. He asked me to not respond to the noises, to just sit still and look straight ahead so that I would not influence Matt by my reaction.
The doctor left the room. When the first animal started to make noise, Matt pressed himself into me and started to tremble. When either animal made a noise, Matt pressed back against me harder.
After a number of attempts to have Matt look at the animals as they made noise, the doctor returned to the room. He was concerned by Matt's lack of response to the noises. The doctor scheduled Matt to have a sedated auditory brainstem response (ABR) test.
Auditory brain stem response testing is a painless and harmless test involving the measurement of electric responses recorded from the hearing nerves and brain by means of small, disk-like electrodes taped behind each ear and on the forehead. Matt was whisked off for his testing while Chris and I waited. I know that my stomach churned and burned while I clutched Chris' hand and awaited the results.
The audiologist joined us in the waiting room after he completed the test. He told us that at the start of the test he was prepared to discover the extent of Matt's hearing loss. Never in his years of practice had he been proven so wrong. Not only did Matt NOT have any hearing loss, he hears better than most people.
Elation and relief swept through me. Where I had feared I had a baby with a hearing loss, I now knew I had a baby with bat hearing. Over the years, we have found that having extremely acute hearing can be painful for Matt, but on that day, I was filled with relief that we had escaped one challenge on our journey with Matt.
The audiologist referred us to a speech therapist. We still needed to discover why our little guy was such a quiet child.
He could make noise but he hardly babbled, cooed, garbled or made any of the beginning language sounds with which most babies address their world.
In the midst of our day to day life with him, we never noticed just how quiet he was. His doctor did notice though and sent us to see an audiologist.
Matt screamed as if the earphones were on fire when the audiologist attempted to put them on his head. Plan B - we were sent to a dimly lit room. In two corners were glass cases each in which housed a large stuffed animal. One was a monkey with cymbals and one an elephant.
The doctor had me hold Matt in my lap. He showed us how the monkey and elephant each made noise. He explained that he would be in the other room watching Matt's reactions to the noises. He asked me to not respond to the noises, to just sit still and look straight ahead so that I would not influence Matt by my reaction.
The doctor left the room. When the first animal started to make noise, Matt pressed himself into me and started to tremble. When either animal made a noise, Matt pressed back against me harder.
After a number of attempts to have Matt look at the animals as they made noise, the doctor returned to the room. He was concerned by Matt's lack of response to the noises. The doctor scheduled Matt to have a sedated auditory brainstem response (ABR) test.
Auditory brain stem response testing is a painless and harmless test involving the measurement of electric responses recorded from the hearing nerves and brain by means of small, disk-like electrodes taped behind each ear and on the forehead. Matt was whisked off for his testing while Chris and I waited. I know that my stomach churned and burned while I clutched Chris' hand and awaited the results.
The audiologist joined us in the waiting room after he completed the test. He told us that at the start of the test he was prepared to discover the extent of Matt's hearing loss. Never in his years of practice had he been proven so wrong. Not only did Matt NOT have any hearing loss, he hears better than most people.
Elation and relief swept through me. Where I had feared I had a baby with a hearing loss, I now knew I had a baby with bat hearing. Over the years, we have found that having extremely acute hearing can be painful for Matt, but on that day, I was filled with relief that we had escaped one challenge on our journey with Matt.
The audiologist referred us to a speech therapist. We still needed to discover why our little guy was such a quiet child.
Neural Plasticity
Matt's first year of life was filled with the usual examinations and inoculations of a typical baby, and additional tests, examinations, procedures leading up to his heart surgery, and then follow up tests, examinations and procedures following his heart surgery.
Because of the complications in connection with his heart surgery and the seizures that followed, it was recommended that Matt have a sedated MRI to determine the extent of his brain damage. We saw the neurologist to discuss the results of the MRI.
September 11, 2001 is a date that most Americans will remember with sadness. For me, the day before, September 10, 2001, is a date I'll always remember with joy. The neurologist told us on that date that the MRI had detected no permanent brain damage. Oh happy days!!
We knew that he experienced oxygen deprivation during/following surgery and the neurologist was fairly sure that he also experienced oxygen deprivation in utero/at delivery. Poor little guy was dealt some pretty hard cards BUT it could have been so much worse. He did not have any permanent brain damage.
The neurologist explained due to neural plasticity - the brain's amazing ability to change and rewire itself - that no one knew what Matt would ultimately be able to do. We all knew he'd be delayed and would have a tough road ahead - but no one knew what the end of the path would be.
I had my mission in front of me - to help Matt rewire his brain. It is a task we are still working on to this day!
Because of the complications in connection with his heart surgery and the seizures that followed, it was recommended that Matt have a sedated MRI to determine the extent of his brain damage. We saw the neurologist to discuss the results of the MRI.
September 11, 2001 is a date that most Americans will remember with sadness. For me, the day before, September 10, 2001, is a date I'll always remember with joy. The neurologist told us on that date that the MRI had detected no permanent brain damage. Oh happy days!!
We knew that he experienced oxygen deprivation during/following surgery and the neurologist was fairly sure that he also experienced oxygen deprivation in utero/at delivery. Poor little guy was dealt some pretty hard cards BUT it could have been so much worse. He did not have any permanent brain damage.
The neurologist explained due to neural plasticity - the brain's amazing ability to change and rewire itself - that no one knew what Matt would ultimately be able to do. We all knew he'd be delayed and would have a tough road ahead - but no one knew what the end of the path would be.
I had my mission in front of me - to help Matt rewire his brain. It is a task we are still working on to this day!
Wednesday, July 22, 2009
Power of Television
When I was pregnant, I had all sorts of ideas about how I would raise the baby I was bringing into the world. One of the things I definitely planned was to limit how much television my child watched.
God laughs at our plans.
Who would have guessed that I would come to look at our television as a true blessing.
When Sally, our angel OT, first started to work with Matt, he would scream. I knew that he needed to do the therapy that Sally was having him perform, but I will never forget him laying on the exercise ball, hollering in pain.
After a few sessions, Sally said that she wanted to try something new. She popped in a kid's video, turned on the video, put the exercise ball in front of the television and placed Matt on the ball. He was so mesmerized by the images on the screen that he did not cry. After that, we had a video play for each of the painful portion of his session. He never complained about what was being done to him while he was distracted by the television.
His love affair with the television began at a few months old. While I was carrying him, had I been told that my baby would start his television addiction at seven months old, I would have been horrified. When it happened, I could not have been more grateful. I discovered the power of television can be a positive thing.
God laughs at our plans.
Who would have guessed that I would come to look at our television as a true blessing.
When Sally, our angel OT, first started to work with Matt, he would scream. I knew that he needed to do the therapy that Sally was having him perform, but I will never forget him laying on the exercise ball, hollering in pain.
After a few sessions, Sally said that she wanted to try something new. She popped in a kid's video, turned on the video, put the exercise ball in front of the television and placed Matt on the ball. He was so mesmerized by the images on the screen that he did not cry. After that, we had a video play for each of the painful portion of his session. He never complained about what was being done to him while he was distracted by the television.
His love affair with the television began at a few months old. While I was carrying him, had I been told that my baby would start his television addiction at seven months old, I would have been horrified. When it happened, I could not have been more grateful. I discovered the power of television can be a positive thing.
Friday, July 10, 2009
Thresholds
By the time Matt was six months old, we thought the worst was behind us and, in many ways, it was. He has survived his surgery. His cardiologist was thrilled with his progress. I took him to his six month check up with his pediatrician expecting to only hear how happy she was at his progress.
Unfortunately, she was concerned with how delayed he was. I was completely unprepared for that comment. He looked amazing to me. She told us to get him evaluated and introduced us to the Harbor Regional Center. An appointment was made for someone to come to our house and evaluate Matt. The evaluation confirmed the doctor's concern: Matt was significantly delayed. We were assigned a counselor from Harbor Regional who would oversee his progress and it was decided that he should have an occupational therapist (OT) work with him twice a week for an hour each session.
What we did not know was with that evaluation and report, we had crossed over another threshold and start traveling down yet another unexpected road. On this road, we would meet and continue to meet many wonderful people who would help and have helped Matt to achieve hard to reach goals.
Our first angel was his first OT, Sally, who worked with him from seven months to two and a half years old. Oh the magic she did!!
Unfortunately, she was concerned with how delayed he was. I was completely unprepared for that comment. He looked amazing to me. She told us to get him evaluated and introduced us to the Harbor Regional Center. An appointment was made for someone to come to our house and evaluate Matt. The evaluation confirmed the doctor's concern: Matt was significantly delayed. We were assigned a counselor from Harbor Regional who would oversee his progress and it was decided that he should have an occupational therapist (OT) work with him twice a week for an hour each session.
What we did not know was with that evaluation and report, we had crossed over another threshold and start traveling down yet another unexpected road. On this road, we would meet and continue to meet many wonderful people who would help and have helped Matt to achieve hard to reach goals.
Our first angel was his first OT, Sally, who worked with him from seven months to two and a half years old. Oh the magic she did!!
Monday, June 29, 2009
Blood Brothers
Many people have been involved in helping Matt survive, thrive, and progress. One of the first groups to step forward to help were the people in my office. When Matt needed to have his surgery, we were told that Matt would need lots of blood. While the hospital had plenty of blood in their blood bank, my co-workers stepped forward, not once but twice, and gave their blood for my son.
One of my co-workers who donated is a single mom. Her then young son was most intrigued by the idea that my baby had his mother's blood flowing through his body. He announced that he and my son were blood brothers since they both shared his mother's blood.
Their bond is a very strong connection. Matt worked very hard to learn how to walk. Whenever he and his blood brother were at the office at the same time, his blood brother would walk him around the whole office, helping him practice this difficult feat and keeping him laughing while they walked.
While many of the people on Matt's team are doctors, therapists, teachers and other professionals, one of the first members of the Matt Team was this young man with a generous spirit and a big heart, who just graduated from high school and moved across the country to attend the University of Connecticut. Although three thousand miles may separate us, Matt's blood brother will always be an important member of Matt's Team!
One of my co-workers who donated is a single mom. Her then young son was most intrigued by the idea that my baby had his mother's blood flowing through his body. He announced that he and my son were blood brothers since they both shared his mother's blood.
Their bond is a very strong connection. Matt worked very hard to learn how to walk. Whenever he and his blood brother were at the office at the same time, his blood brother would walk him around the whole office, helping him practice this difficult feat and keeping him laughing while they walked.
While many of the people on Matt's team are doctors, therapists, teachers and other professionals, one of the first members of the Matt Team was this young man with a generous spirit and a big heart, who just graduated from high school and moved across the country to attend the University of Connecticut. Although three thousand miles may separate us, Matt's blood brother will always be an important member of Matt's Team!
Friday, June 26, 2009
The Beginning
Eighteen weeks gestation is when we found that our journey was not the one anticipated. At twenty four weeks gestation, Matt's congenital heart defect was confirmed and two team members joined our team: my high risk OB and Matt's pediatric cardiologist.
While it was anticipated that Matt would go from birth to heart surgery, he was strong enough to delay his surgery for four months. After a three week stay in NICU, Matt came home on oxygen with orders from his cardiologist: my child, who would not nurse, had to be fed as close to 100% breast milk as possible (I became the family cow - hooked up to the pump on a regular basis!) and he could not get sick at all (or he could die).
We had planned to place Matt in a home daycare center near my office. Obviously, we had to quickly make a new plan. After much discussion, we decided that my husband would become our stay at home parent. For a man who had never held a baby for longer than five minutes, he took to his new role like a champ! As the days went by, it became clear that Matt's path was going to be more challenging than your typical child's.
Matt's surgery was more complicated than anticipated and his heart failed hours after his first surgery; necessitating a second surgery. During the eleven days Matt recovered, he had seizures. The complications lead to another member joining our team: his pediatric neurologist who ultimately determined that Matt had two episodes of oxygen deprivations: around birth and in connection with his heart surgery.
In light of this revelation, it is not surprising that Matt has delays and challenges. What is surprising is how much he can do.
Thus we began our journey with Matt. A journey that continues to this day.
While it was anticipated that Matt would go from birth to heart surgery, he was strong enough to delay his surgery for four months. After a three week stay in NICU, Matt came home on oxygen with orders from his cardiologist: my child, who would not nurse, had to be fed as close to 100% breast milk as possible (I became the family cow - hooked up to the pump on a regular basis!) and he could not get sick at all (or he could die).
We had planned to place Matt in a home daycare center near my office. Obviously, we had to quickly make a new plan. After much discussion, we decided that my husband would become our stay at home parent. For a man who had never held a baby for longer than five minutes, he took to his new role like a champ! As the days went by, it became clear that Matt's path was going to be more challenging than your typical child's.
Matt's surgery was more complicated than anticipated and his heart failed hours after his first surgery; necessitating a second surgery. During the eleven days Matt recovered, he had seizures. The complications lead to another member joining our team: his pediatric neurologist who ultimately determined that Matt had two episodes of oxygen deprivations: around birth and in connection with his heart surgery.
In light of this revelation, it is not surprising that Matt has delays and challenges. What is surprising is how much he can do.
Thus we began our journey with Matt. A journey that continues to this day.
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