Friday, March 29, 2013
Good News
I was a good mom and not a crazy mom. I waited patiently for 3 weeks 6 days to hear back about Gavyn's genetic testing but did not hear from our counselor and they tell you it will take 2-4 weeks. I called on Monday morning and left her a message asking if they had the results because it would be four weeks the next day. She called me back late in the afternoon with some very good news. Gavyn does not have 22q Deletion like Nevin and he does not have any other genetic issues! Praise God! I was so excited and so relieved. It was a flood of emotions. Realizing it is not something Ryan or I am passing on. The other boys don't need to be tested. They should all be able to grow up and have families without extra worry of passing anything on to their kids. It was a great feeling. Next Friday we see Dr.Myers about his growth and hopefully we can find more answers to that question but in the mean time I am going to bask in the glow of my gratefulness that he does not have another diagnosis.
Tuesday, March 26, 2013
First Steps
Gavyn and his BFF Jenny our OT
Gavyn and his super fun ST Jill - seriously, you see that goofy smile? He loved Jill
A during shot! Woah
And a seriously sad face for Jenny. The joke is that Jenny can make my kids cry like no other. The day that stands in Stanley family history is the day Jenny made all three of my kids cry and she never even worked with Skyler. She thought my hubby hated her but he really didn't. We love you Jenny!
Hopefully one day I will have a picture of Adele because she seriously helped Gavyn so much. She kept him and us motivated that he would do amazing things. She was so wonderful and we loved working with her. I also don't have a picture of our service coordinator Heather. She was just as awesome as our therapists. Anytime we needed something she was on top of it. Not only was she easy to work with but we really became friends over those three years and hopefully we will keep in touch with her as well. I have nothing but good things to say about First Steps and everything they did for both boys. I can not believe it has been three years and that we had to say goodbye. Thankfully not for forever, we will totally keep in touch! We will all miss them. Your therapists see you through the worst and best and become your second family. I don't know what I would have done without those 4 amazing women. Thanks ladies!!
Tuesday, March 19, 2013
Nothing Much
We are still in waiting mode around here. I'm anxious to hear what the cleft palette team will say about Nevin next month, hopefully we will hear early in the week. I pray that surgery is an option for him and that we can do it this Spring, have healing and speech therapy this Summer, and start Kindergarten with a bang. I have to keep up that hope for a few more weeks. And we are still waiting to hear from genetics about Gavyn. Back in December when we saw our Neuro Surgeon I had asked the nurse practitioner about Gavyn's growth and if the hydrocephalus had attributed to his slow/non-existent growth, she said that those don't go hand in hand but I should ask Dr. Elbabaa about it. For whatever reason when he came in I forgot to ask him, I am sure we got on some other tangent. Well, we went back last Tuesday and I remembered to ask him. His thought was that we need to see an endocrinologists (which we are seeing Nevin's Dr. Myers for Gav in April) but, he had meningitis and we know there is a lot of scarring on his brain and that could have in fact scarred his pituitary gland and affected his growth. Between that statement and after chatting with Dr. Braddock about the genetic testing I am starting to believe that Gavyn doesn't have a genetic disorder on top of his hydrocephalus. Perhaps his illness has scarred him and affected him in ways we are yet to see, like growth, and who knows what else? Although I hate to see my boys be so small and I pray that teasing/bullying is never an issue for them, there are far worse things in the world than being on the small side. I suppose in a few days (maybe today!) I will have a more concrete answer for Gav, in the meantime I wait.
Friday, March 8, 2013
What people don't understand
This post is going to be something I have not really done before. I started writing this post last Saturday and was extremely frustrated/mad and then in the middle of blogging my iPad died and lost more than half of my writing. That made me more mad but, now I'm glad. I have had time to think more about this issue and calm down from the initial frustration. Here goes...
Last Saturday I was early to my counseling session and decided to meander around Facebook. I opened it up on my phone and this imagine was starring me in the face.
The person who posted it is someone who I love dearly and I think I have a good relationship with. I was not the only person who commented on it and shared how offensive this is to every parent that has a special needs kid. The person who posted it apologized and took the photo down and in their defense I know this person did not mean to hurt anyone and I think it was a post that was not well thought out. That being said, this was a post that I felt needed to be addressed and that I could not just be silent on.
There are so many amazing things about the world we live in now compared to 10, 20 and good lord, 50 years ago, for parents and the kids with special needs. We used to hide these kids away, put them in institutions and there was no real help for them. I am so thankful for the world my kids live in and that they can go to school with their peers, get therapy to help them, have the world include them. It is awesome for them and for our family. I don't need to be ashamed of them and keep them hidden in my home. And yet, with all the advancements in the education system, the health care industry, people learning to be inclusive we still battle things like this graphic posted on Facebook. Every parent of special needs kids knows this and we all know that it is a battle and I am not exaggerating when I use that language. We battle bullies in the classroom, both peers and teachers, we battle with family who don't agree with our methods, we battle insurance agencies and hospitals and then we battle people who believe things like this picture.
Behavioral Disorders are not something to laugh at and not something that anyone should pretend is a label any parent would use instead of calling their child spoiled. I have sat with multiple friends who's kiddos have behavioral disorders and heard the stories of family or friends who tell them that they caused these problems for the kids. That is ridiculous and heart breaking. People do not cause children to have Autism, Childhood Schizophrenia, Bipolar or any other mental illness. No one caused that. These parents are loving, caring parents who are taking the time, money and resources they can to better their childs life with more therapy, better education and a list of specialists out the wazoo. When their child is at Target and has trouble processing the world and everything going on around them and they melt down in a "temper tantrum" and mom and dad need to try and be calm as they take them out of the store, they do not want everyone watching them and judging them and saying, "In my day we called your kid a brat." These children are not brats. My kids are not brats. My friends kids are not brats. They are children made in the image of God and they happen to process the world differently than you and I. If that is a problem for you than that is just what it is. A problem for you. There are many things in the world that are different outside of our own little circle and they are things that might make us uncomfortable unless we educate ourselves on them. There is a real problem with how mental health is addressed and taken care of in our country and these kinds of posts don't help that at all. I don't think the outside world understands how hard it is in the Special Needs community to label your kids. It is easy for the outside world to throw a label on our kids or tell us we shouldn't use a label we use because "your kids aren't that messed up." (Yes, people have said that to me and I drop kick them, in my mind) It is very hard to say, "I have two special needs kids." The first few times I said that I died a little on the inside. I am not used to saying that Nevin has a genetic disorder either. It is painful. People think it is easy for us to say, "My child has a Behavioral Disorder." as if its a band-aid for their ill behavior, or our lack of parenting or whatever. That is a painful thing to say. You don't well up with pride when you are forced to say these things to people. It is personal, it is painful, it is all of your dreams first hoped for crushed in one tiny phrase. It is not an excuse and people should not think it is.
So, if you do or don't have an awesome family with special needs in your life but you hear someone say something ridiculous like this, please, correct them. Maybe they don't know, maybe they are ignorant of things around them. Maybe they do know and are just a bully. Either way, it doesn't matter and it is not an excuse for bad behavior. There are people who simply don't think before they speak. There are also a lot of people in the world who still need to learn how to be human and it takes a village to teach them.
Last Saturday I was early to my counseling session and decided to meander around Facebook. I opened it up on my phone and this imagine was starring me in the face.
The person who posted it is someone who I love dearly and I think I have a good relationship with. I was not the only person who commented on it and shared how offensive this is to every parent that has a special needs kid. The person who posted it apologized and took the photo down and in their defense I know this person did not mean to hurt anyone and I think it was a post that was not well thought out. That being said, this was a post that I felt needed to be addressed and that I could not just be silent on.
There are so many amazing things about the world we live in now compared to 10, 20 and good lord, 50 years ago, for parents and the kids with special needs. We used to hide these kids away, put them in institutions and there was no real help for them. I am so thankful for the world my kids live in and that they can go to school with their peers, get therapy to help them, have the world include them. It is awesome for them and for our family. I don't need to be ashamed of them and keep them hidden in my home. And yet, with all the advancements in the education system, the health care industry, people learning to be inclusive we still battle things like this graphic posted on Facebook. Every parent of special needs kids knows this and we all know that it is a battle and I am not exaggerating when I use that language. We battle bullies in the classroom, both peers and teachers, we battle with family who don't agree with our methods, we battle insurance agencies and hospitals and then we battle people who believe things like this picture.
Behavioral Disorders are not something to laugh at and not something that anyone should pretend is a label any parent would use instead of calling their child spoiled. I have sat with multiple friends who's kiddos have behavioral disorders and heard the stories of family or friends who tell them that they caused these problems for the kids. That is ridiculous and heart breaking. People do not cause children to have Autism, Childhood Schizophrenia, Bipolar or any other mental illness. No one caused that. These parents are loving, caring parents who are taking the time, money and resources they can to better their childs life with more therapy, better education and a list of specialists out the wazoo. When their child is at Target and has trouble processing the world and everything going on around them and they melt down in a "temper tantrum" and mom and dad need to try and be calm as they take them out of the store, they do not want everyone watching them and judging them and saying, "In my day we called your kid a brat." These children are not brats. My kids are not brats. My friends kids are not brats. They are children made in the image of God and they happen to process the world differently than you and I. If that is a problem for you than that is just what it is. A problem for you. There are many things in the world that are different outside of our own little circle and they are things that might make us uncomfortable unless we educate ourselves on them. There is a real problem with how mental health is addressed and taken care of in our country and these kinds of posts don't help that at all. I don't think the outside world understands how hard it is in the Special Needs community to label your kids. It is easy for the outside world to throw a label on our kids or tell us we shouldn't use a label we use because "your kids aren't that messed up." (Yes, people have said that to me and I drop kick them, in my mind) It is very hard to say, "I have two special needs kids." The first few times I said that I died a little on the inside. I am not used to saying that Nevin has a genetic disorder either. It is painful. People think it is easy for us to say, "My child has a Behavioral Disorder." as if its a band-aid for their ill behavior, or our lack of parenting or whatever. That is a painful thing to say. You don't well up with pride when you are forced to say these things to people. It is personal, it is painful, it is all of your dreams first hoped for crushed in one tiny phrase. It is not an excuse and people should not think it is.
So, if you do or don't have an awesome family with special needs in your life but you hear someone say something ridiculous like this, please, correct them. Maybe they don't know, maybe they are ignorant of things around them. Maybe they do know and are just a bully. Either way, it doesn't matter and it is not an excuse for bad behavior. There are people who simply don't think before they speak. There are also a lot of people in the world who still need to learn how to be human and it takes a village to teach them.
School
Gavyn started preschool the week after his bday, he goes Monday and Thursday in the morning. Can you believe it? It is crazy to me that he is in school but really awesome. It is so exciting that he can go to school, go to regular school, that he is in a typical classroom with typically developing kids. It is awesome that he should be keeping up academically with his peers and transition to Pre-K4 and Kindergarten with minimal or no issues at all. These are dreams hoped for and achieved. The first day of school he did very well walking in, going to his room, hanging up his coat, all with no tears until, he realized that I was not staying and then he wanted to go home and cried. I told Ms. Pam that as soon as I left I was sure he would be fine and sure enough, 5 minutes after I left he settled in and did great! The next school day he cried for 3 minutes and was fine and the last day I dropped him off he waved goodbye and said, "It's my school mom, I go to school!" Proudest mommy moment. All his teachers love him to death and want to cuddle him! The other kids love him (I'm sure they think he is a baby) and want to play with him. They have sent me videos and pictures and he is so proud sitting at the table and doing his work or participating in circle time. He knows he is a big guy and he is so excited about it. I love it. This is going to be a good year for him and he is going to grow so much at school. I am just really sad that Ms. Pam is retiring and won't be with him and us next year. She has been the best teacher, the best! I could not have asked for more.
Pictures
Nevin in the birthday boy hat at PS Kids on his Birthday
Gavyn on his birthday with his new Yoshi backpack
First day of school!!
Scope
I can't believe it has been a week since I blogged! This week went by too fast. Friday, Saturday and Sunday were full of so many fun things! We got to spend time with both of my brothers and their lovely ladies on different nights. Bonus, they brought dinner to us! They are all pretty great. :) Sunday we celebrated one of my favorite people's birthday eating Chinese Dim Sum and it was super yummy. Then all 6 of us crashed with stomach flu together in the middle of the night. Oh my... It sucked. Thankfully 12 hours later all the kids were fine, Ryan took about 24 hrs and of course I took longest. By Tuesday night the house was disinfected and we were back to normal life! But it's made this week weird and short.
The most amazing thing happened this week though. Tuesday Nevin saw the ENT nurse practitioner at Cardinal Glennon to have his soft palette scoped to see what is really going on with his mouth. We have been waiting for almost a year to do this procedure because he needed to have more vocabulary to accomplish what they needed to see to see if they can fix anything. We have been prepping him for a week with nasal spray and talking endlessly about seeing Loretta and putting a camera in his nose to see his boogers (come on, he's a boy!). I was terrified for the procedure and that if he threw a fit all data would be useless and we would need to do xRays of his mouth and that would not be good or as helpful. When we arrived we had the nicest nurse come in and chat with us. First they needed to put spray in his nose and have him swallow it to numb the area. She let him spray the bottle a few times to see that it wasn't scary, we talked about how it would taste like tooth paste and how much he loves tooth paste (he really does, he would just eat a tube of it if I was stupid enough to let him), that it would feel just like the nasal spray at home. One, two, three, ready or not here comes the spray! Amazing. No tears, no fighting, he took it like a man. We gave him 5 minutes to get over any kind of attitude and then Loretta came in with lots of presents and suckers that he could only have if he was good and said all the things she asked him to say. He climbed up into the nurses lap, let the ENT put the camera in his nose and he intently watched the TV screen of his nose and palette and was totally intrigued by watching everything in his mouth move! It was insane how good he was. I mean, if someone stuck a camera up your nose you would probably want to punch them, right? He just understand what was going on and that he really wanted that red sucker. We finally got an awesome picture of how his soft palette moves or lack of movement and closure. I feel justified. For years I have said something was wrong and have been told by multiple doctors that nothing was wrong he just needed more speech therapy. Well, there is something wrong! His palette does not do what it is supposed to do and now we know what we are working with. We need to wait for the surgeon to review the data and determine what our next step is. We might need to do more speech therapy and review in 6 months or more. I am hopeful that he will be a good candidate for surgery to repair his palette so that it can achieve the closure that it needs for him to make the proper sounds and not sound like he talks out of his nose. We are so much closer than we have ever been and I'm so thankful for that. We need some good news for this sweet boy who works so hard to be understood and heard.
The most amazing thing happened this week though. Tuesday Nevin saw the ENT nurse practitioner at Cardinal Glennon to have his soft palette scoped to see what is really going on with his mouth. We have been waiting for almost a year to do this procedure because he needed to have more vocabulary to accomplish what they needed to see to see if they can fix anything. We have been prepping him for a week with nasal spray and talking endlessly about seeing Loretta and putting a camera in his nose to see his boogers (come on, he's a boy!). I was terrified for the procedure and that if he threw a fit all data would be useless and we would need to do xRays of his mouth and that would not be good or as helpful. When we arrived we had the nicest nurse come in and chat with us. First they needed to put spray in his nose and have him swallow it to numb the area. She let him spray the bottle a few times to see that it wasn't scary, we talked about how it would taste like tooth paste and how much he loves tooth paste (he really does, he would just eat a tube of it if I was stupid enough to let him), that it would feel just like the nasal spray at home. One, two, three, ready or not here comes the spray! Amazing. No tears, no fighting, he took it like a man. We gave him 5 minutes to get over any kind of attitude and then Loretta came in with lots of presents and suckers that he could only have if he was good and said all the things she asked him to say. He climbed up into the nurses lap, let the ENT put the camera in his nose and he intently watched the TV screen of his nose and palette and was totally intrigued by watching everything in his mouth move! It was insane how good he was. I mean, if someone stuck a camera up your nose you would probably want to punch them, right? He just understand what was going on and that he really wanted that red sucker. We finally got an awesome picture of how his soft palette moves or lack of movement and closure. I feel justified. For years I have said something was wrong and have been told by multiple doctors that nothing was wrong he just needed more speech therapy. Well, there is something wrong! His palette does not do what it is supposed to do and now we know what we are working with. We need to wait for the surgeon to review the data and determine what our next step is. We might need to do more speech therapy and review in 6 months or more. I am hopeful that he will be a good candidate for surgery to repair his palette so that it can achieve the closure that it needs for him to make the proper sounds and not sound like he talks out of his nose. We are so much closer than we have ever been and I'm so thankful for that. We need some good news for this sweet boy who works so hard to be understood and heard.
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