Ups and Downs
We continue to strive for Joyful.
Michael has really benefited from his service dog. He has responsibilities now and takes them seriously. He has to feed and groom her every day himself. He does a great job and tells you about it. Wiley keeps Michael centered. She walks by his side providing comfort and friendship. She sleeps on his feet providing touch, deep pressure and reassurance he is not alone. She covers him in in tantrums, keeping him connected to the outside and not just in. His tantrums/non compliance are considerably shorter and more easily directed when Wiley involved. She is his touch point. There when he is just sitting and thinking. There when he plays with his toys. There when he is on his swing. There when he just wants to cuddle. The face he will look directly at and the name he never forgets.
In scoring Michael for his current placement in various categories, what is shown he is a very on target child with a big deficit in ability to communicate. This isn't all his CDM. Michael has been diagnosed as truly autistic and not a side of his Congenital Myotonic Dystrophy. They are also considering alternate forms of communication. We will always push Speech first but we need to have something else as well. They have been doing all kinds of evaluations so will be interesting to see what they come up with.
Sometimes when speaking with other parents offering suggestions and their views, I have realized EACH family is different and the only correct path is the one you chose for your child given all the options. So many say, Keep him in typical class, he will do better. Michael is against that in every way he can show us. He is in a typical class and goes to the SPED room when he is overwhelmed. Michael by choice only spends 1.5- 1.75 hours a day in his typical class. He demands to go to SPED room where he does not feel so overwhelmed. Thus he spends most of his day with adults instead of his typical peers. They send a peer with him at certain times to keep him with and they find it a treat which is fantastic. Michael just knows he wants to be somewhere less crowded and less buzzing. He says that.. Less buzzing.
We all talked as a group and had the Autism specialist with us as well and agreed that Michael wants the smaller class size that the SPED class at another local school offers. They still join their typical peers for recess and "elective (specials)" like music and such but have the smaller classes with other peers for general education which Michael refused to stay in. They are still taught at their level so Michael will not lose progress. He will still have his 1:1. School shouldn't hurt and should be a place he enjoys. Forcing him into a mold he does not want to fit isn't kind in my opinion. Unless by some miracle we do get a drug that not only reverses his CDM but also his autism, Michael will always live with me and need to have others help him. I want him to succeed the best he can and for him to do that, he needs to enjoy the situations we are using to teach him how to get there. I have spent many moments crying and second guessing myself, but I do know I am making the best choice for my child. I think it is mourning the idea I had of where he would be or how quickly we would accomplish or.... everyone has dreams for their child and sometimes reality and those dreams do not mesh. We need to step back and look at our child and try and put ourselves in their place.. Where do you most like to be, Michael? If the answer is obvious by their actions, well that is where he will be. I will feel no shame for not meeting someone else's expectations either. Joyful again outweighs these ideas that somehow he will be someone else more capable. Not that we do not continue to push but there is a point where you have to let them decide as well. We are not hearing the buzz, or feeling the fear, or the panicking when he cannot communicate needs. How can we truly relate?
Summer is upon us and we have many camping trips and outings planned. Steven will be Michael's Support worker for the Summer to help with his college costs. Angel will step in when Steven is busy. Since Michael adores them both, he will be happy. We will be taking our first plane trip with Dog along for his continue study in Utah and then again for a conference in PA. Life continues to be an adventure and we plan to make it as joyful as we can. There should be no room for things that take that away from us. Keep stepping forward.
Michael has really benefited from his service dog. He has responsibilities now and takes them seriously. He has to feed and groom her every day himself. He does a great job and tells you about it. Wiley keeps Michael centered. She walks by his side providing comfort and friendship. She sleeps on his feet providing touch, deep pressure and reassurance he is not alone. She covers him in in tantrums, keeping him connected to the outside and not just in. His tantrums/non compliance are considerably shorter and more easily directed when Wiley involved. She is his touch point. There when he is just sitting and thinking. There when he plays with his toys. There when he is on his swing. There when he just wants to cuddle. The face he will look directly at and the name he never forgets.
In scoring Michael for his current placement in various categories, what is shown he is a very on target child with a big deficit in ability to communicate. This isn't all his CDM. Michael has been diagnosed as truly autistic and not a side of his Congenital Myotonic Dystrophy. They are also considering alternate forms of communication. We will always push Speech first but we need to have something else as well. They have been doing all kinds of evaluations so will be interesting to see what they come up with.
Sometimes when speaking with other parents offering suggestions and their views, I have realized EACH family is different and the only correct path is the one you chose for your child given all the options. So many say, Keep him in typical class, he will do better. Michael is against that in every way he can show us. He is in a typical class and goes to the SPED room when he is overwhelmed. Michael by choice only spends 1.5- 1.75 hours a day in his typical class. He demands to go to SPED room where he does not feel so overwhelmed. Thus he spends most of his day with adults instead of his typical peers. They send a peer with him at certain times to keep him with and they find it a treat which is fantastic. Michael just knows he wants to be somewhere less crowded and less buzzing. He says that.. Less buzzing.
We all talked as a group and had the Autism specialist with us as well and agreed that Michael wants the smaller class size that the SPED class at another local school offers. They still join their typical peers for recess and "elective (specials)" like music and such but have the smaller classes with other peers for general education which Michael refused to stay in. They are still taught at their level so Michael will not lose progress. He will still have his 1:1. School shouldn't hurt and should be a place he enjoys. Forcing him into a mold he does not want to fit isn't kind in my opinion. Unless by some miracle we do get a drug that not only reverses his CDM but also his autism, Michael will always live with me and need to have others help him. I want him to succeed the best he can and for him to do that, he needs to enjoy the situations we are using to teach him how to get there. I have spent many moments crying and second guessing myself, but I do know I am making the best choice for my child. I think it is mourning the idea I had of where he would be or how quickly we would accomplish or.... everyone has dreams for their child and sometimes reality and those dreams do not mesh. We need to step back and look at our child and try and put ourselves in their place.. Where do you most like to be, Michael? If the answer is obvious by their actions, well that is where he will be. I will feel no shame for not meeting someone else's expectations either. Joyful again outweighs these ideas that somehow he will be someone else more capable. Not that we do not continue to push but there is a point where you have to let them decide as well. We are not hearing the buzz, or feeling the fear, or the panicking when he cannot communicate needs. How can we truly relate?
Summer is upon us and we have many camping trips and outings planned. Steven will be Michael's Support worker for the Summer to help with his college costs. Angel will step in when Steven is busy. Since Michael adores them both, he will be happy. We will be taking our first plane trip with Dog along for his continue study in Utah and then again for a conference in PA. Life continues to be an adventure and we plan to make it as joyful as we can. There should be no room for things that take that away from us. Keep stepping forward.
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