So Logan had quite an ordeal a few weeks ago. He got very very sick and ended up in the ER with severe abdominal pain. The first hospital thought it was his appendix and transferred him to another hospital by ambulance. Where they found out he actually had Scarlet Fever. All of this is really beside the point, this blog is about how the staff dealt with Logan. I has taken me almost a month to fully process how I felt about the entire event. Being that I was almost 8 months pregnant at the time I needed to process everything and make sure I was not being overly emotional about the situation. Lets start with Hospital Number 1, shall we?
Well the first hospital we went to was our local small town hospital. The ER was not busy and they got us back almost immediately. I informed the nurse that Logan had Aspergers and was amazed at the care and concern he received from the entire nursing staff and the Dr. They all spoke very softly and calmly, they told him everything they were going to do and why before they did it, and the Dr. even asked if there was something special he should do. Overall even when he was very upset about the IV the Dr and nursing staff was absolutely amazing! I was relieved. When they transferred him to the local Children's Hospital they tried to arrange a transport ambulance that I could ride with him, but it was going to be hours. So in the end they had a special pediatric transport team come, and I had to load Logan in an ambulance by himself.
The pediatric transport team was amazing as well. There was a nurse, a medic, and a driver. They new about his Aspergers and did an amazing job helping him through the situation. They were kind and caring and walked him through in detail what was going to happen. I prepared Logan as best I could for the trip and I must say he did AMAZING! Surprisingly the hospital I have the issue with was the children's specialty hospital. I must say it appears even the Dr. seemed to lack training on how to deal with any children, let alone one with Aspergers or ASD.
When the Dr. came in she was loud and ignored Logan completely. She began just pushing on his stomach with no warning. He immediately started having a freakout, and she asked if he would even tell me if he had a sore throat. Before I could even answer she said "I doubt it, and left the room." It was one of those parenting moments where hindsight I should have stepped out of the room and called her out, and said " he has Aspergers, he isn't nonverbal, he is aware of what goes on around him, and I would appreciate you treating him like a person!" But I was so overwhelmed to be honest I just looked at Sam and comforted Logan as best I could. The nurses were not better at all. They didn't give him any warning and from my point of view appeared to be manhandling him instead of just telling what they needed him to do. For example, his arm began swelling and they had to adjust his IV which is taped to a board/splint in his arm. The nurse snaps at Logan and begins to fix it and then puts a super hot, heating pad on it without explaining it or letting him feel it or anything. Logan flipped and with good reason. It was hot to me, which I love hot stuff. Logan being very sensitive to temperature it would have felt intense. Sam actually jumped down the nurses throat about it. I am glad he did. There was one person at the entire hospital that seemed to get Logan. He was one of the orderlies. He was a tall lanky kid in his early 20's who was amazing with Logan! I hope he continues on for a nursing degree or to be a Dr, because he was AMAZING. Overall I was incredibly disappointed that they seemed completely unaware of how to treat a person, let alone a child who is scared and has Aspergers.
I seems to me with ASD on the rise that ER's and Dr's would have some type of training surrounding how to deal with kids and adults on the spectrum. I know sometimes in an emergency you just have to get it done, but the times we had issues it wasn't an immediate threat to Logan. I struggle with the fact I didn't confront the nurse and Dr. directly. I also felt as though the nursing staff was acting unprofessionally in other areas, which is an entirely other matter. I will be writing a letter to the hospital about our experience. I know there is a good chance nothing with change, but I have to try to prevent another child from being treated like that. Hopefully Logan doesn't have to go through anything like that again, and I don't believe I will let it go unchecked again. Logan is bright, aware, and capable. He just does better when he has compassionate caring professionals taking care of him.
Tuesday, March 6, 2012
Monday, January 16, 2012
What happens now?
Well a lot of people wonder what happens after D-Day? What happens when you know your child has Aspergers? Well for us it was time to jump into action and embrace the amazing child that was meant for us. It seems like a big responsibility not only do we need to help him in the areas he is behind but we need to keep up with his amazing little brain! We have been blessed with an amazing support system which has been instrumental in getting Logan this far. He is enrolled in 2 different preschools. In the morning 3 days a week he goes to a Co-op preschool and in the afternoon he is enrolled in the Early Intervention Preschool through the school district on his IEP.
At the Co-op he has the opportunity to play and learn with an amazing group of kids. It is a very loving, secure environment where the parents are really involved! It has been amazing to see him surrounded by not just Sam and I but an entire group of adults who take the time to understand how his little brain works and take the time to walk him through the social and emotional missteps that are common place for him. The teacher, Michelle has a unique bond with him, and somehow always knows how to talk him through his trouble spots. Some of his biggest cheerleader have been his friends from preschool and their parents. We have had some HUGE breakthroughs occur within those walls and those amazing people have been a huge part of that. Just last week we had one of those huge breakthroughs. Logan does very well with set boundaries. Last year he really struggled with circle time at school. He used to hide under the easels or get very upset and have huge meltdowns. After we learned about his possible Aspergers we realized he wasn't being difficult, it was too overwhelming for him. With his sensory problems it was just too much for his brain to process. After months and months of circle time we finally got Logan to sit on alphabet rug with the other kids. He felt safe inside the confines of his "L." So day after day Logan would sit on his "L" and nowhere else. This was our saving grace last year, the more time he spent at circle time, the more he got comfortable and the better he did with the overwhelming sensory environment. Now fast forward to this year. Last year there was 8 kids in his class, now there are 15. That "L" became his lifeline. However in a group of 15- 4 year olds, it also become a source of confrontation. Now the kids are 4, I truly believe it is not an intentional act to be mean, but they love to steal the "L" after all if Logan likes it so much it must be magical right? So several months ago my mother made him a special mat with his name Logan B. on it. More about why he prefers to be Logan B later. So we have been trying to retrain Logan B's brain that if someone takes the "L" there are several things you can do:
1. Ask politely if you can have the L
2. Choose a different letter to sit on
3. Or quietly go get your mat and sit there
Now we have been working on this "L" problem for the better part of the year. And we have gone from full out freak outs, to really pretty minor upsets. But last Monday we had our huge BREAKTHROUGH!!! One of the kids had sat on Logan's "L" and calmly and quietly Logan said I guess I should get my mat. He got his mat sat it next to his friend and continued to enjoy cirlce time! One of the parents who will forever hold a special place in my heart rushed right over to give him positive reinforcement for making such a good choice. For those of you you have never dealt with a child with Aspergers it may not sound like much but we have literally spend HOURS AND HOURS of time on this problem. He would cry and cry and come home stressed about why the other kids take his "L" and no matter how many times we explain it or tried to give him alternatives it just wouldn't click! And now with the help of an entire group of everyday angels Logan has learned a valuable cooping technique that hopefully will overflow into other areas of his life. He is starting to accept "change ups" in his everyday routine and as his mother I am so thankful for that!
Now 4 days a week he also attends the REIP which is R. Early Intervention Preschool. It is through his school district and has been a huge blessing. He has his IEP established and has an amazing teacher, several aides and his occupational therapist. These amazing women provide yet another support system for Logan and for us and have help so much with his self esteem and independence. I admit I have not been as involved as I should be at his afternoon preschool. I struggle with how much Mom is too much MOM? He is so independent and the teacher does an amazing job of holding the bar very high for him, which he needs. I feel like I might hold him back by hoovering, he is capable of so much and they have just the right mix to get amazing results. When he first started there he would not acknowledge the teacher when she greeted him in the morning and now he always responds with eye contact, however brief and a "Hello Teacher Marci!" This is where he got his new name Logan B. There are 2 Logans in his class. He decided that it was all or nothing, so everything needed to be changed to Logan B. If forget even on his lunch note he reminds me that Logan is not his name! It is Logan B. :) I thought it was a phase but 5 months later he is still Logan B.
We are still just at the beginning of our very long journey with Aspergers. The things Logan B. has accomplished so far have put my mind at ease that he will be just fine. That Aspergers is just a part of who he is and will NOT define what he will do in the future or what he is capable of. I no longer fear what is ahead but look forward to seeing where this all will lead. We have an amazing network of people ready to catch us if we fall, and help push us when we feel overwhelmed. It may not take a village to raise a child, but it does if you want to do it right!
At the Co-op he has the opportunity to play and learn with an amazing group of kids. It is a very loving, secure environment where the parents are really involved! It has been amazing to see him surrounded by not just Sam and I but an entire group of adults who take the time to understand how his little brain works and take the time to walk him through the social and emotional missteps that are common place for him. The teacher, Michelle has a unique bond with him, and somehow always knows how to talk him through his trouble spots. Some of his biggest cheerleader have been his friends from preschool and their parents. We have had some HUGE breakthroughs occur within those walls and those amazing people have been a huge part of that. Just last week we had one of those huge breakthroughs. Logan does very well with set boundaries. Last year he really struggled with circle time at school. He used to hide under the easels or get very upset and have huge meltdowns. After we learned about his possible Aspergers we realized he wasn't being difficult, it was too overwhelming for him. With his sensory problems it was just too much for his brain to process. After months and months of circle time we finally got Logan to sit on alphabet rug with the other kids. He felt safe inside the confines of his "L." So day after day Logan would sit on his "L" and nowhere else. This was our saving grace last year, the more time he spent at circle time, the more he got comfortable and the better he did with the overwhelming sensory environment. Now fast forward to this year. Last year there was 8 kids in his class, now there are 15. That "L" became his lifeline. However in a group of 15- 4 year olds, it also become a source of confrontation. Now the kids are 4, I truly believe it is not an intentional act to be mean, but they love to steal the "L" after all if Logan likes it so much it must be magical right? So several months ago my mother made him a special mat with his name Logan B. on it. More about why he prefers to be Logan B later. So we have been trying to retrain Logan B's brain that if someone takes the "L" there are several things you can do:
1. Ask politely if you can have the L
2. Choose a different letter to sit on
3. Or quietly go get your mat and sit there
Now we have been working on this "L" problem for the better part of the year. And we have gone from full out freak outs, to really pretty minor upsets. But last Monday we had our huge BREAKTHROUGH!!! One of the kids had sat on Logan's "L" and calmly and quietly Logan said I guess I should get my mat. He got his mat sat it next to his friend and continued to enjoy cirlce time! One of the parents who will forever hold a special place in my heart rushed right over to give him positive reinforcement for making such a good choice. For those of you you have never dealt with a child with Aspergers it may not sound like much but we have literally spend HOURS AND HOURS of time on this problem. He would cry and cry and come home stressed about why the other kids take his "L" and no matter how many times we explain it or tried to give him alternatives it just wouldn't click! And now with the help of an entire group of everyday angels Logan has learned a valuable cooping technique that hopefully will overflow into other areas of his life. He is starting to accept "change ups" in his everyday routine and as his mother I am so thankful for that!
Now 4 days a week he also attends the REIP which is R. Early Intervention Preschool. It is through his school district and has been a huge blessing. He has his IEP established and has an amazing teacher, several aides and his occupational therapist. These amazing women provide yet another support system for Logan and for us and have help so much with his self esteem and independence. I admit I have not been as involved as I should be at his afternoon preschool. I struggle with how much Mom is too much MOM? He is so independent and the teacher does an amazing job of holding the bar very high for him, which he needs. I feel like I might hold him back by hoovering, he is capable of so much and they have just the right mix to get amazing results. When he first started there he would not acknowledge the teacher when she greeted him in the morning and now he always responds with eye contact, however brief and a "Hello Teacher Marci!" This is where he got his new name Logan B. There are 2 Logans in his class. He decided that it was all or nothing, so everything needed to be changed to Logan B. If forget even on his lunch note he reminds me that Logan is not his name! It is Logan B. :) I thought it was a phase but 5 months later he is still Logan B.
We are still just at the beginning of our very long journey with Aspergers. The things Logan B. has accomplished so far have put my mind at ease that he will be just fine. That Aspergers is just a part of who he is and will NOT define what he will do in the future or what he is capable of. I no longer fear what is ahead but look forward to seeing where this all will lead. We have an amazing network of people ready to catch us if we fall, and help push us when we feel overwhelmed. It may not take a village to raise a child, but it does if you want to do it right!
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