threelittles
New Member
Hello everyone,
I just found this group tonight and have been reading some. I feel relieved and overwhelmed at the same time! Also, I'm sure I am just missing this and feel lame, but where is the key for all the abbreviations?? I don't know what difficult child means, or easy child, or many others.
Here is part of our story. My oldest ds, 6 years old, was born with a birth defect of his esophagus and spent much of his first year in intensive care, on a ventilator, feeding tube, multiple surgeries, and so much more to the story. He came home and for the first three years we worked very hard at getting him healthy and whole, eating by mouth, able to be in public, etc. His g-tube came out at age 3. Thinking the worst was behind us and relative good health was restored, we then entered into the world of finding out there were speech and behavior disorders. We began speech therapy as a toddler and at 3, I brought his behavior concerns up to our pediatrician. He recommended a full psychiatric evaluation by a team of psychologists at the major university hospital where our son had stayed. This came back that he was normal, just developmentally delayed from all of his medical issues. Almost two years later, we went for his 4th hearing test and found out that he had a profound hearing loss in both ears. He had been gradually losing his hearing all this time related to his time in ICU. We didn't realize that it was a gradual loss until recently, piecing everything together. So that explained a lot of why speech progress was so slow and a lot of the behavior problems. Now we are dealing with the world of hearing impaired, but there are still a lot of behavior issues. I didn't agree with the findings of our previous psch evaluation, because things were not going well at home. So our (new since we had moved) pediatrician recommended a pediatric neurologist who we saw and who diagnosed our son with ADHD, emphasis on high impulsivity with ODD component.
That is where we are now. I do not know what to do with all of the information, and I am struggling. He doesn't just fit into the ADHD/ODD mold because he also has an extensive medical history and health problems, as well as hearing impaired. Not to mention schooling issues. I feel like I need to get all of his care coordinated in one place and I am always piecing it all together. I am pretty discouraged as a mom right now because I feel like I am constantly behind in how we can best help him. There is so much to learn in every area that he struggles in, but I don't have a lot of free time (I also have a barely three year old son, and a one year old daughter).
I have read The Explosive Child and it is very helpful, and also From Defiance to Cooperation, also great. I am having trouble being consistent, and I know that is critical to his success. I am a very sensitive, very hard on myself, mother who fiercely loves my children and desperately wants the best for them (as we all do).
Anyway, my struggle is that I do not want to medicate and I am not sure what the next step I should take as far as professional help. Is it a developmental pediatrician, or a neuro-psychologist? I also am tired of our whole lives being about pursuing treatment for his problems. I mean, I want as normal a family life as possible, with least invasive as possible (but effective in meeting his needs) help. I have been on a wait list for a neuro-psychologist for months, and spoke to another who told me that basically if I didn't want to medicate, then I didn't need to see her. Is there anyone else who is treating without medication? Through family/parenting coping strategies and environmental modification?
My other issue is school, because he is about to start first grade and this will be the first year he is in a mainstream class (rather than hearing impaired). There is nothing in his IEP related to ADHD/ODD yet either, because I was hesitant about sticking another label on him... Help me please.
I just found this group tonight and have been reading some. I feel relieved and overwhelmed at the same time! Also, I'm sure I am just missing this and feel lame, but where is the key for all the abbreviations?? I don't know what difficult child means, or easy child, or many others.
Here is part of our story. My oldest ds, 6 years old, was born with a birth defect of his esophagus and spent much of his first year in intensive care, on a ventilator, feeding tube, multiple surgeries, and so much more to the story. He came home and for the first three years we worked very hard at getting him healthy and whole, eating by mouth, able to be in public, etc. His g-tube came out at age 3. Thinking the worst was behind us and relative good health was restored, we then entered into the world of finding out there were speech and behavior disorders. We began speech therapy as a toddler and at 3, I brought his behavior concerns up to our pediatrician. He recommended a full psychiatric evaluation by a team of psychologists at the major university hospital where our son had stayed. This came back that he was normal, just developmentally delayed from all of his medical issues. Almost two years later, we went for his 4th hearing test and found out that he had a profound hearing loss in both ears. He had been gradually losing his hearing all this time related to his time in ICU. We didn't realize that it was a gradual loss until recently, piecing everything together. So that explained a lot of why speech progress was so slow and a lot of the behavior problems. Now we are dealing with the world of hearing impaired, but there are still a lot of behavior issues. I didn't agree with the findings of our previous psch evaluation, because things were not going well at home. So our (new since we had moved) pediatrician recommended a pediatric neurologist who we saw and who diagnosed our son with ADHD, emphasis on high impulsivity with ODD component.
That is where we are now. I do not know what to do with all of the information, and I am struggling. He doesn't just fit into the ADHD/ODD mold because he also has an extensive medical history and health problems, as well as hearing impaired. Not to mention schooling issues. I feel like I need to get all of his care coordinated in one place and I am always piecing it all together. I am pretty discouraged as a mom right now because I feel like I am constantly behind in how we can best help him. There is so much to learn in every area that he struggles in, but I don't have a lot of free time (I also have a barely three year old son, and a one year old daughter).
I have read The Explosive Child and it is very helpful, and also From Defiance to Cooperation, also great. I am having trouble being consistent, and I know that is critical to his success. I am a very sensitive, very hard on myself, mother who fiercely loves my children and desperately wants the best for them (as we all do).
Anyway, my struggle is that I do not want to medicate and I am not sure what the next step I should take as far as professional help. Is it a developmental pediatrician, or a neuro-psychologist? I also am tired of our whole lives being about pursuing treatment for his problems. I mean, I want as normal a family life as possible, with least invasive as possible (but effective in meeting his needs) help. I have been on a wait list for a neuro-psychologist for months, and spoke to another who told me that basically if I didn't want to medicate, then I didn't need to see her. Is there anyone else who is treating without medication? Through family/parenting coping strategies and environmental modification?
My other issue is school, because he is about to start first grade and this will be the first year he is in a mainstream class (rather than hearing impaired). There is nothing in his IEP related to ADHD/ODD yet either, because I was hesitant about sticking another label on him... Help me please.