It's New Years Eve. A time to reflect on the past year and think of the future. It seems this year more than any other there is much to think of. The past year has held many emotions for me. Overall it has been a wonderful year, filled with love and goodness. AJ's diagnosis of apraxia has been the toughest part and that just occurred leaving me with so many mixed feelings.
I am happy that we have an answer and an idea of what needs to be done to help the situation. I am saddened that it is as serious as it is and that he will be challenged by this, potentially for the rest of his life. I am angry that others didn't take my concerns more seriously and that I didn't force the issue. If I had he may have had even more of a head start on intervention. I am worried that I don't know everything I need to in order to give him the best chance possible to overcome this challenge. I am frustrated by his father's refusal to acknowledge the need to "label" him as a special needs child for fear that it will be a convenient "excuse" for anything that doesn't work out for the rest of his life. I am thankful that AJ is not apparently suffering any of the other challenges that can accompany apraxia and that he is otherwise a bright and healthy, loving boy. I feel guilty for any sorrow I have since there are so many families facing much worse than this.
I know not what the future will hold for my sweet boy. I have had a slight glimpse, thanks to the information others have provided. I foresee challenges, hard-work, and frustrations mixed with successes. I hope there will be increased confidence for my sweet little guy. New friendships and support for him. An increase in the number of people who can understand him. I hope that he will remain thoughtful and creative and a great problem solver.
I hope that I can balance my need to learn everything about apraxia and my dedication to getting him all the help he needs with being a good mom to my daughter and a good friend, daughter, sister, aunt and girlfriend to the other people in my life. I can easily see myself focusing on what seems the most urgent and immediate need, AJ's apraxia, and not giving everyone and everything the attention they deserve.
I want to be sure that apraxia is just another part of AJ and not the thing that defines him or his life. This may prove harder than I think because it effects his ability to relate to the world and so many of us define ourselves in terms of our relations to others. I want to take charge of the apraxia and not have it control us.
I guess the thing I want most of all for 2008 is persepctive. The ability to remember that while this seems overwhelming, it just is. There are reasons for everything in my belief system and, while I have yet to understand them in this case, I am sure there is one for this as well. I wish therefore for the wisdom and grace to accept this and to move on, doing what must be done, staying strong and knowing that in the end, it will all be okay.
Monday, December 31, 2007
Sunday, December 30, 2007
A long beginning to a longer journey...
My name is Michele. I am 39 and a single mom to two amazing children. My daughter is 15 yrs old and my son is 3yrs old. I am creating this blog for several reasons. I am hoping that others may find help through our experiences. I am hoping that blogging will allow us to better document and appreciate the improvements of my son's condition as time passes, and the main reason is as an outlet for the many thoughts, emotions and questions I have as a result of learning about my son's apraxia. I am getting ahead of myself.
I am the director of a child development center. I have worked with children age 6 weeks to 12 years for over 20 years of my life. I hold a bachelor's degree in social work with a cognate in child development and welfare and a minor in developmental psychology. So when I began having concerns with my son's speech development I didn't feel that I was being an overly worried mom or imaginging things as was suggested by some.
AJ was a bit slower in many areas of his development. He was perfectly content to lay on his back or his stomach and took longer than average to roll over, crawl, sit, pull to standing and walk. He was still within normal ranges though and I do know that children do things in their own time so I was not overly concerned. I began to worry about his language acquisition about the time he was 18 mos. His older sister was an early talker and by the time she was a year and a half she was speaking in short sentences and had a huge vocabulary. I was doing all of the same things to encourage speech development with AJ as I had with his sister but he was not progressing very much at all. He had a few words and that was it. I decided to give it time.
By the time he was two there was, in my mind, and obvious problem. AJ is a very bright boy and was getting extremely frustrated in not being able to make his wishes known. He would have tantrums and melt downs. He could go, open the cupboard and bring me the Nesquick but couldn't say milk. He could repeat "choc mik" after me but not find the words on his own. I decided that he needed an evaluation and against his pediatrician's reccomendation to wait, I had him evaluated by Early-On. It was determined that he was 2-3 months language delayed- not enough to qualify for services. He had just had a brief spurt of improvement between the time I scheduled the appointment and the actual date of the assessment so I figured maybe we were getting caught up. In my heart I knew it was not this easy.
Things did not improve much. He does attempt to say many things but only his father, sister and grandmother and I are able to understand him. We are really attentive and aware of context or we might not understand either. There are times when we have no clue either. He becomes more difficult to understand the longer the word or sentence. He can correctly pronounce words sometimes but not at others. At his three year check up I again addressed my concerns with his pediatrician. I also shared that he is becoming aggressive with friends at school pushing them when they can't understand him. The doctor once more encouraged me to wait as AJ had just transitioned to preschool from the toddler room and he felt that being around more verbal children would help him to catch up. I smiled and nodded and knew he was wrong.
I spoke to a speech pathologist who works with another child at my center. She couldn't work with AJ as we live in a different school district but she was very helpful and really listened to me and my concerns. She carefully mentioned that much of what I was describing sounded like Apraxia of Speech and suggested that I might want to look online. If I agreed that apraxia sounded like what my son was experienceing she encouraged me to get him re-evaluated as soon as possible and gently warned me that there would be a long road ahead.
I went immediately to my office and found Apaxia-Kids.org and read their family start guide. I knew that this was what AJ was dealing with and that without intervention he would not improve. I called the school district and got an assesment scheduled.
On December 13th, 2007 our concerns were validated and confirmed. AJ has Childhood Apraxia of Speech. A neurological disorder that makes it difficult for him to properly sequence the sounds needed to pronounce words. This will require intensive speech therapy and a lot of practice. It will take years and the results are not guaranteed.
On January 11th I will attend his first IEP. On January 15th AJ will begin attending a special education preschool which will provide him with individual speech therapy as well as assistance working on his speech throughout the day as well. This is just the beginning of much more ahead of us.
I have faith that with early and intense intervention, a lot of reinforcement and practice and a strong involved family AJ's prognosis will be the best possible.
I am the director of a child development center. I have worked with children age 6 weeks to 12 years for over 20 years of my life. I hold a bachelor's degree in social work with a cognate in child development and welfare and a minor in developmental psychology. So when I began having concerns with my son's speech development I didn't feel that I was being an overly worried mom or imaginging things as was suggested by some.
AJ was a bit slower in many areas of his development. He was perfectly content to lay on his back or his stomach and took longer than average to roll over, crawl, sit, pull to standing and walk. He was still within normal ranges though and I do know that children do things in their own time so I was not overly concerned. I began to worry about his language acquisition about the time he was 18 mos. His older sister was an early talker and by the time she was a year and a half she was speaking in short sentences and had a huge vocabulary. I was doing all of the same things to encourage speech development with AJ as I had with his sister but he was not progressing very much at all. He had a few words and that was it. I decided to give it time.
By the time he was two there was, in my mind, and obvious problem. AJ is a very bright boy and was getting extremely frustrated in not being able to make his wishes known. He would have tantrums and melt downs. He could go, open the cupboard and bring me the Nesquick but couldn't say milk. He could repeat "choc mik" after me but not find the words on his own. I decided that he needed an evaluation and against his pediatrician's reccomendation to wait, I had him evaluated by Early-On. It was determined that he was 2-3 months language delayed- not enough to qualify for services. He had just had a brief spurt of improvement between the time I scheduled the appointment and the actual date of the assessment so I figured maybe we were getting caught up. In my heart I knew it was not this easy.
Things did not improve much. He does attempt to say many things but only his father, sister and grandmother and I are able to understand him. We are really attentive and aware of context or we might not understand either. There are times when we have no clue either. He becomes more difficult to understand the longer the word or sentence. He can correctly pronounce words sometimes but not at others. At his three year check up I again addressed my concerns with his pediatrician. I also shared that he is becoming aggressive with friends at school pushing them when they can't understand him. The doctor once more encouraged me to wait as AJ had just transitioned to preschool from the toddler room and he felt that being around more verbal children would help him to catch up. I smiled and nodded and knew he was wrong.
I spoke to a speech pathologist who works with another child at my center. She couldn't work with AJ as we live in a different school district but she was very helpful and really listened to me and my concerns. She carefully mentioned that much of what I was describing sounded like Apraxia of Speech and suggested that I might want to look online. If I agreed that apraxia sounded like what my son was experienceing she encouraged me to get him re-evaluated as soon as possible and gently warned me that there would be a long road ahead.
I went immediately to my office and found Apaxia-Kids.org and read their family start guide. I knew that this was what AJ was dealing with and that without intervention he would not improve. I called the school district and got an assesment scheduled.
On December 13th, 2007 our concerns were validated and confirmed. AJ has Childhood Apraxia of Speech. A neurological disorder that makes it difficult for him to properly sequence the sounds needed to pronounce words. This will require intensive speech therapy and a lot of practice. It will take years and the results are not guaranteed.
On January 11th I will attend his first IEP. On January 15th AJ will begin attending a special education preschool which will provide him with individual speech therapy as well as assistance working on his speech throughout the day as well. This is just the beginning of much more ahead of us.
I have faith that with early and intense intervention, a lot of reinforcement and practice and a strong involved family AJ's prognosis will be the best possible.
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