May 14th is a pretty big day in the Adams house! We found out a few weeks ago that May 14, 2013 is the very first official Apraxia Awareness Day and will be recognized as such by the United States Congress! This is huge for kids with Apraxia! The hard working people at CASANA have worked very hard to raise awareness, research and provide grants and support to kids and families who are affected by apraxia. I have been working the last few weeks trying to get in touch with an Ohio State Representative to have the proclamation set in Ohio. I spoke with State Rep. Chris Redfern today and I found out that he has agreed to do it! Yay! Most of you know how near and dear this is to my heart. Those of you that know Mason personally know his journey and how hard he was worked. For those of you that do not I wanted to share his story with you :)
I guess I should just start from the beginning. I had such a wonderful pregnancy with Mason. He was born healthy, and beautiful I might add, on March 1, 2008 after 39 hours of labor. He was a wonderful baby! He was developing great. Then one day I noticed that he wasn't babbling like a normal baby. I brushed it off because he was developing with his motor skills like crazy. By 9 months he still wasn't babbling or really making any noises besides giggling and crying. I talked to the pediatricians and they said he was fine and that we shouldn't worry. At age 1 he still was not saying anything not even Mamma or Dadda. Again I talked to the peds and they said not to worry. At 18 months we were in the same boat and he was getting very frustrated! I also started noticing that he was very sensitive to sounds and also sensitive to things he touched like different textures. I talked to the peds and they again said he was fine we needed to wait to do anything. So at 2 I had decided enough was enough. I knew in my gut something was up so I told the pediatrician's I wanted to get a second opinion. They sent me to our local Help Me Grow program and the speech pathologist and Occupational therapist evaluated Mason. They decided it was a good idea if we started Mason in speech therapy right away. They also noticed how sensitive he was to sounds and touching things. So he also started therapy for a Sensitivity Disorder. He has been in therapy for about a year and we really had no progress. The only things he was saying was "mamma", "bubble" and "woowoo" which is a little dog he sleeps with. He started doing a little better with the sensitivity issues. What was strange is he was not a typical 2nd child where Emily talks for him. He wanted to talk so badly but just can't get it out. His frustration was so sad.
On a Friday morning in September I went up stairs to get Emily some socks before pre-school and I peeked in Mason's room to check on him because I thought he was still sleeping. When I looked in he was laying flat on his back violently shaking from head to toe and his eyes were rolling in the back of his head. After about a minute he stop and his eyes kind of glazed over. I picked him up and took hip downstairs. I called the peds and they said it sounded like a a seizure. SCARY! They made him and an appointment right away. When I took him in the doctor they said with his other issues they think our best option was to send him up the Rainbow Babies Children's Hospital in Cleveland. Finally we were going to get some answers for my sweet boy! So on September 30th at 7am we packed Mason up and headed up to Cleveland. The hospital was great! Very kid friendly right off the bat. His first appointment was an EEG. An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Since they think he had a seizure they did this test. It was sad to watch them do it. It wasn't invasive or anything but it was traumatic for a 2 1/2 year old. He was a big boy and did great up until the very end. We were in the procedure room for about 2 hours. After that we headed to the atrium to get some lunch. He got to play and burn off some energy. After lunch we went to see the pediatric neurologist. She was great! We got the results from the EEG and they were normal. Which was good. She did not diagnose him with a specific type of epilepsy but called it unspecified epilepsy. She started talking to us more about his other issues. She is leaning towards something called Childhood apraxia of speech. She was also concerned about a possible tumor so he had a MRI the following week. Praise God that came back normal. She suggested we see a Developmental Pediatrician at Rainbow Babies. After a 3 week clinical trial we finally got a diagnosis! Mason had severe Childhood Apraxia and Sensory Processing Disorder (which is on the autism spectrum).
Children with Childhood Apraxia have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words. Can you even imagine being trapped in your own body not being able say what you want or not being able to or tell someone when you are sad or hurt. It's so heartbreaking to watch him try and speak and not be able to. Research shows the children with CAS have more success when they receive frequent (3-5 times per week) and intensive treatment. We had also been teaching Mason sign language since he was about 18 months so that he can at least communicate with us his basic needs. One of the most important things for us and our family to remember is that treatment of apraxia of speech takes time and commitment. Children with CAS need a supportive environment that helps them feel successful with communication.
Mason is still in intense speech therapy and sees a SLP twice a week. He has over 15,000 minutes of speech therapy. He also sees a Occupational Therapist once a week. He is now 5 and we have seen a lot of progress this past year. Mason's family and friends have grown to understand him. And yet at times, Mason is still frustrated as he gets older and has more to say. Imagine being told your three year old may never speak well enough for others to understand. Or even worse, imagine being a three year old with so much to say but one to understand you. My husband, Brent, and I, along with our family, are not ever going to stop raising awareness for Childhood Apraxia of Speech. Mason has a long journey ahead of him but I am so proud to be his mom and be by his side every single step of the way! I will continue to fight for Mason and other children who have apraxia. This cause has become my passion and I will continue to work very hard for CASANA and kids with Apraxia! Thank you from the bottom of my heart to everyone that has loved Mason and supported him in his journey! I will again this year be coordinating the 2013 Greater Cleveland Area's Walk & 5K for Apraxia. You can find out more here http://www.apraxia-kids.org/greaterclevelandwalk
Wednesday, May 8, 2013
Still So Much to Say
May 14th is a pretty big day in the Adams house! We found out a few weeks ago that May 14, 2013 is the very first official Apraxia Awareness Day and will be recognized as such by the United States Congress! This is huge for kids with Apraxia! The hard working people at CASANA have worked very hard to raise awareness, research and provide grants and support to kids and families who are affected by apraxia. I have been working the last few weeks trying to get in touch with an Ohio State Representative to have the proclamation set in Ohio. I spoke with State Rep. Chris Redfern today and I found out that he has agreed to do it! Yay! Most of you know how near and dear this is to my heart. Those of you that know Mason personally know his journey and how hard he was worked. For those of you that do not I wanted to share his story with you :)
I guess I should just start from the beginning. I had such a wonderful pregnancy with Mason. He was born healthy, and beautiful I might add, on March 1, 2008 after 39 hours of labor. He was a wonderful baby! He was developing great. Then one day I noticed that he wasn't babbling like a normal baby. I brushed it off because he was developing with his motor skills like crazy. By 9 months he still wasn't babbling or really making any noises besides giggling and crying. I talked to the pediatricians and they said he was fine and that we shouldn't worry. At age 1 he still was not saying anything not even Mamma or Dadda. Again I talked to the peds and they said not to worry. At 18 months we were in the same boat and he was getting very frustrated! I also started noticing that he was very sensitive to sounds and also sensitive to things he touched like different textures. I talked to the peds and they again said he was fine we needed to wait to do anything. So at 2 I had decided enough was enough. I knew in my gut something was up so I told the pediatrician's I wanted to get a second opinion. They sent me to our local Help Me Grow program and the speech pathologist and Occupational therapist evaluated Mason. They decided it was a good idea if we started Mason in speech therapy right away. They also noticed how sensitive he was to sounds and touching things. So he also started therapy for a Sensitivity Disorder. He has been in therapy for about a year and we really had no progress. The only things he was saying was "mamma", "bubble" and "woowoo" which is a little dog he sleeps with. He started doing a little better with the sensitivity issues. What was strange is he was not a typical 2nd child where Emily talks for him. He wanted to talk so badly but just can't get it out. His frustration was so sad.
On a Friday morning in September I went up stairs to get Emily some socks before pre-school and I peeked in Mason's room to check on him because I thought he was still sleeping. When I looked in he was laying flat on his back violently shaking from head to toe and his eyes were rolling in the back of his head. After about a minute he stop and his eyes kind of glazed over. I picked him up and took hip downstairs. I called the peds and they said it sounded like a a seizure. SCARY! They made him and an appointment right away. When I took him in the doctor they said with his other issues they think our best option was to send him up the Rainbow Babies Children's Hospital in Cleveland. Finally we were going to get some answers for my sweet boy! So on September 30th at 7am we packed Mason up and headed up to Cleveland. The hospital was great! Very kid friendly right off the bat. His first appointment was an EEG. An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Since they think he had a seizure they did this test. It was sad to watch them do it. It wasn't invasive or anything but it was traumatic for a 2 1/2 year old. He was a big boy and did great up until the very end. We were in the procedure room for about 2 hours. After that we headed to the atrium to get some lunch. He got to play and burn off some energy. After lunch we went to see the pediatric neurologist. She was great! We got the results from the EEG and they were normal. Which was good. She did not diagnose him with a specific type of epilepsy but called it unspecified epilepsy. She started talking to us more about his other issues. She is leaning towards something called Childhood apraxia of speech. She was also concerned about a possible tumor so he had a MRI the following week. Praise God that came back normal. She suggested we see a Developmental Pediatrician at Rainbow Babies. After a 3 week clinical trial we finally got a diagnosis! Mason had severe Childhood Apraxia and Sensory Processing Disorder (which is on the autism spectrum).
Children with Childhood Apraxia have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words. Can you even imagine being trapped in your own body not being able say what you want or not being able to or tell someone when you are sad or hurt. It's so heartbreaking to watch him try and speak and not be able to. Research shows the children with CAS have more success when they receive frequent (3-5 times per week) and intensive treatment. We had also been teaching Mason sign language since he was about 18 months so that he can at least communicate with us his basic needs. One of the most important things for us and our family to remember is that treatment of apraxia of speech takes time and commitment. Children with CAS need a supportive environment that helps them feel successful with communication.
Mason is still in intense speech therapy and sees a SLP twice a week. He has over 15,000 minutes of speech therapy. He also sees a Occupational Therapist once a week. He is now 5 and we have seen a lot of progress this past year. Mason's family and friends have grown to understand him. And yet at times, Mason is still frustrated as he gets older and has more to say. Imagine being told your three year old may never speak well enough for others to understand. Or even worse, imagine being a three year old with so much to say but one to understand you. My husband, Brent, and I, along with our family, are not ever going to stop raising awareness for Childhood Apraxia of Speech. Mason has a long journey ahead of him but I am so proud to be his mom and be by his side every single step of the way! I will continue to fight for Mason and other children who have apraxia. This cause has become my passion and I will continue to work very hard for CASANA and kids with Apraxia! Thank you from the bottom of my heart to everyone that has loved Mason and supported him in his journey! I will again this year be coordinating the 2013 Greater Cleveland Area's Walk & 5K for Apraxia. You can find out more here http://www.apraxia-kids.org/greaterclevelandwalk
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