So I have to vent. I hate the internet. Okay I really don't hate the internet - I love the internet. I love that there is up to date information that is always at your finger tips. That you can find out results of new research studies going on. That you can find others going through your same situation. But I hate the anxiety I feel when I find this new information. Because quite frankly - the new information that is being discovered about PTEN Hamartoma Tumor Syndrome is not any better information than before. It is actually worse. Every time I read a research article, the rate of breast cancer goes up (originally it was 25%, than 50%, and now it is up to 85% lifetime risk of breast cancer in your lifetime).
I hate that I find a blog about a mom going through the new diagnosis that she and her daughter (who is 9) and what it entails, both physically and mentally. And her thoughts of anger and sadness resonate with me. The fact that her daughter has to live with what this means, that as she gets older and asks more questions, it scares the mom that she has to report these. I know that every case is different. I know that some people deal with mild symptoms, but than there are others who struggle with the risk of cancer, and the diagnosis of cancer, every day. And i worry because my test results are not back yet. And if they come back, they are finding more people are being diagnosed with this mutation with breast cancer earlier (some women as early as 25 years). That there are women who chose bilateral masectomy and after they do this they find cancer in their breasts. I am fearful of if my test comes back positive, what this will mean. I try not to worry (I am told to not worry about things that I don't know the answers to, but I feel like this is going to be my life forever).
So now I am struggling again. I am anxious. I am nervous. And it is always when I am not with my kids or my husband. When I have time to think about the what ifs. And when I read these blogs and it feels like the person blogging is me. (Besides all the medical issues that her and her child are facing currently). And than I worry - my child is almost 3, her child is 9. We have a lot of time between now and than to start experiencing some of the same things. I pray we don't, but I am trying to prepare for if we do. And it is a constant struggle in my brain. So please bear with me if some days I just seem out of it. If some days, I look like I might start crying. Or if some days I just am plain grumpy. This is a lot harder than I thought it would be...
Wednesday, January 30, 2013
Thursday, January 24, 2013
The Day of Processing...
So yesterday was a day of getting information. Today is a day of processing. I dwell on things, I know I do and that is a weakness (sometimes a strength) of mine. I overanalyze, and usually after I over analyze, I come back to the ground and am able to function. But for the first couple days after I hear information, I usually am in my own world. So to those who are around during those days, I apologize. I go from being happy, to being sad, to being nervous, to being angry, to being okay. My mind races, my heart hurts, and than I am better once I lay eyes again on my kids and get the hug and kiss I have needed all day.
But today, right now, I am an absolute wreck. I am trying hard to process this information. I am trying really hard to be okay with this information. But I am also trying to accept everything for what it is. Now, don't get me wrong, I completely, 100% accept and love my child. No matter what I hear about her or what struggles we get, I never struggle with her. I struggle with the challenges she will be facing. With the kids who are just plain mean as she gets older. With the difficulties she is going to have to overcome. I struggle that I might not be strong enough for her. I may not be able to give her all she needs to be great in this world. I am devastated that I can not protect her.
I have to wonder, at what point do you say you have a child with "special needs"? At what point do you say it is okay to classify her as this, not to put her into a box, but to allow my mind and body the ability to give her the services that she might need. Is she a child with "special needs"? Is it okay for me to pick up the magazine that talks about just that - Raising a child with special needs? Am I allowed to do that? Or am I putting her into a bubble that she doesn't belong? I don't want anything she gets diagnoses with or evaluated for to define who she is. The developmental delays, trouble with socialization, autistic type behaviors, even the PTEN Hamartoma Tumor Syndrome is not WHO she is. It is the struggles she needs to overcome. It is a part of her, but it doesn't define her. She is full of energy, she is loving to her family, she is fun and adventerous, and full of animation. All in her own place, all in her own time. She can't be forced to do things, but when she wants to man she is so talented and so bright.
We are lucky we have the family we have. Such an amazing support system. We are so lucky that Izzy is such an amazing big sister. We are so lucky that Brooklynn is such an amazing little sister. They were born at the right time, in the right order. They complete our lives, they make things amazing.
But some days, the struggles we have are just a little overwhelming. The doctor's appointments, the diagnosis, the testing, the feelings, are just a little too much to handle. Some days, I wish I could just go to bed and just cuddle with my kids, or even just roll up in a ball. Some days, I feel like that is all that I need. But I can't. I must stay strong. I must not be selfish. And I have to realize all the positives we have in our lives. I mean, it is hard to struggle with these things when what you see of Brooklynn is so amazing, and she is so healthy. I am trying really hard to dismiss the "What ifs" that come into my head.
Some days I wonder if maybe I am just too weak. So many people deal with their own struggles and sometimes I wonder if I am just so absorbed in ours, but that they are really nothing compared to most people. We are dealing with some minor things, but eventually, when you have a lot of minor things, it gets a little overwhelming. And today, I am accepting that fact. Tomorrow, or even this afternoon, I hope I am stronger than I am right now.
But today, right now, I am an absolute wreck. I am trying hard to process this information. I am trying really hard to be okay with this information. But I am also trying to accept everything for what it is. Now, don't get me wrong, I completely, 100% accept and love my child. No matter what I hear about her or what struggles we get, I never struggle with her. I struggle with the challenges she will be facing. With the kids who are just plain mean as she gets older. With the difficulties she is going to have to overcome. I struggle that I might not be strong enough for her. I may not be able to give her all she needs to be great in this world. I am devastated that I can not protect her.
I have to wonder, at what point do you say you have a child with "special needs"? At what point do you say it is okay to classify her as this, not to put her into a box, but to allow my mind and body the ability to give her the services that she might need. Is she a child with "special needs"? Is it okay for me to pick up the magazine that talks about just that - Raising a child with special needs? Am I allowed to do that? Or am I putting her into a bubble that she doesn't belong? I don't want anything she gets diagnoses with or evaluated for to define who she is. The developmental delays, trouble with socialization, autistic type behaviors, even the PTEN Hamartoma Tumor Syndrome is not WHO she is. It is the struggles she needs to overcome. It is a part of her, but it doesn't define her. She is full of energy, she is loving to her family, she is fun and adventerous, and full of animation. All in her own place, all in her own time. She can't be forced to do things, but when she wants to man she is so talented and so bright.
We are lucky we have the family we have. Such an amazing support system. We are so lucky that Izzy is such an amazing big sister. We are so lucky that Brooklynn is such an amazing little sister. They were born at the right time, in the right order. They complete our lives, they make things amazing.
But some days, the struggles we have are just a little overwhelming. The doctor's appointments, the diagnosis, the testing, the feelings, are just a little too much to handle. Some days, I wish I could just go to bed and just cuddle with my kids, or even just roll up in a ball. Some days, I feel like that is all that I need. But I can't. I must stay strong. I must not be selfish. And I have to realize all the positives we have in our lives. I mean, it is hard to struggle with these things when what you see of Brooklynn is so amazing, and she is so healthy. I am trying really hard to dismiss the "What ifs" that come into my head.
Some days I wonder if maybe I am just too weak. So many people deal with their own struggles and sometimes I wonder if I am just so absorbed in ours, but that they are really nothing compared to most people. We are dealing with some minor things, but eventually, when you have a lot of minor things, it gets a little overwhelming. And today, I am accepting that fact. Tomorrow, or even this afternoon, I hope I am stronger than I am right now.
Wednesday, January 23, 2013
Early Childhood Center Evaluation
Today we had our evaluation results from the public schools. It all was overwhelming, as always. It was all pretty much expected. But I must say it is pretty difficult when you see numbers placed next to your child's name to classify your child under certain levels. If you have been following along, Brooklynn will have to transition out of FirstSteps and into the school district when she turns 3. So we have been evaluated (and when I mean evaluated she had 13 total evaluations done). And today we were given all the results. Sam was able to take off for this meeting so he was there with me as well. Most of these paragraphs goes into depth about each evaluation, for an overall picture, skip down to the bottom if you don't feel like reading everything
So they look at her scores and see how many deviations below the average she is to see if she qualifies for services. If she is -1.5 for 2, or -2 for one area, she qualifies for services. Anything below 78 was -1.5, and I think anything below 70 was -2.0. This kind of is how they evaluate to see what she would need.
Good news is that her vision and hearing are good - which we knew due to having those evaluated prior. They evaluated her Adaptive Behavior, using the Battelle Developmental Inventory. They evaluate 5 domains. Adaptive domain measures her self-care (she scored in the 1st percentile) and personal responsibility (she scored in the 25th percentile). Between these two, her developmental quotient was 80, so while she was slightly below average, this does not qualify her in of itself.
Her Academic Performance is more of cognitive. They use the same Battelle Developmental Inventory for this. Her attention and memory (scored in 1st percentile) was at an age equivelant of a 1 year 3 month old, her reasoning and academic (scored in the 2nd percentile) were <2 years, and her perception and concepts (scored in 1st percentile) was ranged with a 1 year 4 month old. This placed her at a developmental quotient of 64 (-2 deviations below the normal). She demonstrates a short attention span and lack of impulse control which made it difficult to test some things. She has a hard time with answering questions or following verbal directions, and does not really look towards the person speaking to her.
We also did her social and emotional status. They did multiple evaluations to determine her status on this, but the first one was the Battelle Developmental Inventory. She did okay with the adult interaction (scored in 5th percentile), but she has trouble with peer interaction (scored in <1st percentile). They also look at her self-concept and social role (scored in 1st percentile). So all of these three combined, she scored a 74 (4th percentile) (so -1.5 deviation). They also looked at an Autism rating, which I will talk about in a bit.
Communication status, she was evaluated for her speech. Amazingly, this was one of her highest scores and this is one of the therapies we get through Firststeps. Her total language score (or the words that she understands and speaks) was 82 - so average. (12th percentile). Her articulation score was a little lower (not 100% scored because she was not cooperating). They found she was hard to understand, and therefore, could benefit from speech therapy, but that alone would not qualify her for services. They scored her as a total of 52, and anything greater than 61 is normal for her age.
Physical and occupational therapy evaluated her to see if she has problems. In her motor domain on the Battelle Developmental Inventory, she had a developmental quotient of 87, so was percentile ranked of 19th. This was her highest score. Her Sensory Processing Measure evaluation was done by both me and her preschool teacher. She ranked much better at home than at school. She was typical in social participation, vision, and hearing, had some problems in touch, body awareness, planning and ideas, and definite dysfunction in balance and motion. At school, she had some problems with vision and body awareness, but definite dysfunction in social participation, hearing, touch, balance and motion, and planning and ideas. Her total sensory score was a 76 in the school form (this one had a different rank - 80 was the highest school - the closer you get to 80, the worse off you are - so she is pretty close to have definite problems in this are for school).
They observed her in school, and saw a lot of the concerns that we have been seeing. She had trouble participating in circle time - and had to be reminded many times to participate in the group. She finds comfort with the teachers by wanting to sit in their laps or hold their hands, but has a hard time interacting with her peers. She becomes preoccupied, and has trouble moving on often. She has physical conflicts with her peers when she wants something they have (nothing extreme, but she does not handle these conflicts well).
So now back to the autism rating. They verbalized they can not diagnose autism - that has to be done by a medical professional. But they can do evaluations and see if she has autistic type behaviors. This is the point I cried, because they rank it based on whats called a T-Score. Any score of 59 or less indicates small to average number of concerns. 60-64 indicated slightly elevated concerns in regard to ASD (Autism Spectrum) type behavior. 65-69 are considered elevated range, and anything 70 or above are very elevated, and often strongly associated with a clinical diagnosis of autism spectrum disorder. This is ranked based on an evaluation her dad and I filled out. I was a little shocked to see the results. We have always suspected she might have some autistic type behaviors. But I never thought she would rank high. Her total score was 65 (elevated). This means she has many behavioral characteristics that are similar to behaviors of children diagnosed with ASD. DSM-IV-TR scale was very elevated at 71 - this demonstrates symptoms that are directly related to the diagnostic criteria medically for ASD. She had slightly elevated scores for social/communication and unusual behaviors.
Treatment scales were also ranked. She is elevated in peer socialization, stereotypy (so typical movements/behaviors seen in ASD), and behavioral rigidity (has a tough time changing her routine). She was average in adult socialization, and attention/self-regulation. She was slightly elevated in social/emotional reciprocity, atypical language, and sensory sensitivity. So overall she is consistent with ASD. So now we have more to back us up to get her evaluated from a medical standpoint to see if she needs to have an autistic diagnosis.
So all in all, she qualifies to participate in Early Childhood Center. We will meet February 13th to do her officiall IEP - which is an Individualized Education Plan. We will find out exactly what services she will get. I have a feeling between ranking -2 deviations in 2 things, -1.5 in at least 1 thing, and the autism spectrum rating, we will probably get into the special education programming. There is a possibility we might just do the preschool program, but we know we will at least get some sort of therapy. I am anxious. I am scared. I am saddened that we have heard "Autism" along with my child. But I am glad we will be getting services when she turns 3. I am glad we are validated in our feelings, that there are others who are seeing behaviors that can be concerning. And I am glad that we have found where we need to be. So now on to the next road in this adventure. I am not sure how to feel, but I know she is still the same Brooklynn, no matter what results we heard today. And I love every bit of her.
So they look at her scores and see how many deviations below the average she is to see if she qualifies for services. If she is -1.5 for 2, or -2 for one area, she qualifies for services. Anything below 78 was -1.5, and I think anything below 70 was -2.0. This kind of is how they evaluate to see what she would need.
Good news is that her vision and hearing are good - which we knew due to having those evaluated prior. They evaluated her Adaptive Behavior, using the Battelle Developmental Inventory. They evaluate 5 domains. Adaptive domain measures her self-care (she scored in the 1st percentile) and personal responsibility (she scored in the 25th percentile). Between these two, her developmental quotient was 80, so while she was slightly below average, this does not qualify her in of itself.
Her Academic Performance is more of cognitive. They use the same Battelle Developmental Inventory for this. Her attention and memory (scored in 1st percentile) was at an age equivelant of a 1 year 3 month old, her reasoning and academic (scored in the 2nd percentile) were <2 years, and her perception and concepts (scored in 1st percentile) was ranged with a 1 year 4 month old. This placed her at a developmental quotient of 64 (-2 deviations below the normal). She demonstrates a short attention span and lack of impulse control which made it difficult to test some things. She has a hard time with answering questions or following verbal directions, and does not really look towards the person speaking to her.
We also did her social and emotional status. They did multiple evaluations to determine her status on this, but the first one was the Battelle Developmental Inventory. She did okay with the adult interaction (scored in 5th percentile), but she has trouble with peer interaction (scored in <1st percentile). They also look at her self-concept and social role (scored in 1st percentile). So all of these three combined, she scored a 74 (4th percentile) (so -1.5 deviation). They also looked at an Autism rating, which I will talk about in a bit.
Communication status, she was evaluated for her speech. Amazingly, this was one of her highest scores and this is one of the therapies we get through Firststeps. Her total language score (or the words that she understands and speaks) was 82 - so average. (12th percentile). Her articulation score was a little lower (not 100% scored because she was not cooperating). They found she was hard to understand, and therefore, could benefit from speech therapy, but that alone would not qualify her for services. They scored her as a total of 52, and anything greater than 61 is normal for her age.
Physical and occupational therapy evaluated her to see if she has problems. In her motor domain on the Battelle Developmental Inventory, she had a developmental quotient of 87, so was percentile ranked of 19th. This was her highest score. Her Sensory Processing Measure evaluation was done by both me and her preschool teacher. She ranked much better at home than at school. She was typical in social participation, vision, and hearing, had some problems in touch, body awareness, planning and ideas, and definite dysfunction in balance and motion. At school, she had some problems with vision and body awareness, but definite dysfunction in social participation, hearing, touch, balance and motion, and planning and ideas. Her total sensory score was a 76 in the school form (this one had a different rank - 80 was the highest school - the closer you get to 80, the worse off you are - so she is pretty close to have definite problems in this are for school).
They observed her in school, and saw a lot of the concerns that we have been seeing. She had trouble participating in circle time - and had to be reminded many times to participate in the group. She finds comfort with the teachers by wanting to sit in their laps or hold their hands, but has a hard time interacting with her peers. She becomes preoccupied, and has trouble moving on often. She has physical conflicts with her peers when she wants something they have (nothing extreme, but she does not handle these conflicts well).
So now back to the autism rating. They verbalized they can not diagnose autism - that has to be done by a medical professional. But they can do evaluations and see if she has autistic type behaviors. This is the point I cried, because they rank it based on whats called a T-Score. Any score of 59 or less indicates small to average number of concerns. 60-64 indicated slightly elevated concerns in regard to ASD (Autism Spectrum) type behavior. 65-69 are considered elevated range, and anything 70 or above are very elevated, and often strongly associated with a clinical diagnosis of autism spectrum disorder. This is ranked based on an evaluation her dad and I filled out. I was a little shocked to see the results. We have always suspected she might have some autistic type behaviors. But I never thought she would rank high. Her total score was 65 (elevated). This means she has many behavioral characteristics that are similar to behaviors of children diagnosed with ASD. DSM-IV-TR scale was very elevated at 71 - this demonstrates symptoms that are directly related to the diagnostic criteria medically for ASD. She had slightly elevated scores for social/communication and unusual behaviors.
Treatment scales were also ranked. She is elevated in peer socialization, stereotypy (so typical movements/behaviors seen in ASD), and behavioral rigidity (has a tough time changing her routine). She was average in adult socialization, and attention/self-regulation. She was slightly elevated in social/emotional reciprocity, atypical language, and sensory sensitivity. So overall she is consistent with ASD. So now we have more to back us up to get her evaluated from a medical standpoint to see if she needs to have an autistic diagnosis.
So all in all, she qualifies to participate in Early Childhood Center. We will meet February 13th to do her officiall IEP - which is an Individualized Education Plan. We will find out exactly what services she will get. I have a feeling between ranking -2 deviations in 2 things, -1.5 in at least 1 thing, and the autism spectrum rating, we will probably get into the special education programming. There is a possibility we might just do the preschool program, but we know we will at least get some sort of therapy. I am anxious. I am scared. I am saddened that we have heard "Autism" along with my child. But I am glad we will be getting services when she turns 3. I am glad we are validated in our feelings, that there are others who are seeing behaviors that can be concerning. And I am glad that we have found where we need to be. So now on to the next road in this adventure. I am not sure how to feel, but I know she is still the same Brooklynn, no matter what results we heard today. And I love every bit of her.
Wednesday, January 9, 2013
Sam's Results!
Finally, after 2 months of waiting, we received a phone call with Sam's test results. And they are...drum roll please...NEGATIVE!!!! This is wonderful news! We don't have to worry any more about him getting cancer than any other person out there. WE can rest easy knowing that at least for now, our fears have been laid to rest for him.
Next step? I get my labs drawn tomorrow. And the waiting game starts. And I have to say I have some thoughts in my head and some fears (I am sure the same that were going through Sam's head when we tested him). What happens if mine comes back positive? That means i have to have my breasts, uterus, and thyroid checked within the next year or so. My cancer risk is 10-80%. But I am not going to think about that now (or try REALLY hard not to). I will deal with it when the news comes. 8 weeks from now. Argh.
But if my test comes back negative - we can talk about having another baby! We will know that there is so much less of a chance that we will be passing something on to our kids. We will know that it is not a 50% chance of passing something on. And we will know that Izzy has no chance of having this PTEN mutation! And my heart will feel so much better. I will still be struggling with the daily worries about Brooklynn, but I can just focus on what we need to on 1 person. It will be wonderful. If I send positive thoughts into the universe, we will get some positive results right? I guess I can think that for the next 8 weeks to help get me through.
And for 8 weeks, we have something to celebrate. :)
Subscribe to:
Posts (Atom)