1. Sometimes being a family with children with special needs makes life easier- today we went for a long bike ride, Matthew, Jacob and I. We were on busy roads, and places that most would not think made sense for neurotypical kids to ride, let alone kids with Matthew's history- but for Matthew it worked.....why?
- because his body was in motion- he always does better in motion
- because he was surrounded by cars moving, his favorite thing
- because there was no talking just riding
- because at the end an ice cream was calling his name!
2. When you just meet my family, please remember, I have been doing this a long time.......so, to the new respite worker, rather than telling me, "when I am here, you can attend to the other kids, I will help David", maybe you should assume that the reason my hair isnt dry and my teeth arent brushed is because David is having a rough day. Maybe I know how to calm him down after 9 years together, and you should watch my example, rather than doing what your textbooks say should work.
I am more than open to learning from others, and have picked up some awesome tricks from teachers, therapists, friends and babysitters, but David is not in a great spot right now, so what will take me 2 minutes to do with him, and create less stress for all of us, is better than you doing "what you learned in a book".
3. I wish that I knew which Doctor could help David with his cough/tic/noise he makes at night. It could be so many things.
- it could be him fighting the cold the rest of us are fighting, but his ability to cough is limited due to core muscle weakness so the noise he makes to cough doesnt produce enough to get rid of the phlegm.
- it could be a seizure, although sometimes he does respond to me calling his name, so I dont know if a seizure makes sense
- it could be a tic, if it is, it has to be exhausting him. Listening to it hurts and exhausts me
Unfortunately, it comes and goes. So what doctor do we see? How do I make sure they see it when he does it?
I video taped him doing it last night, and will take it to his next neurology appointment. Regardless, it is keep him up all night long, making him exhausted and therfore impacting his learning/coping skills.
4. I don't know how to tell Matthew he has no friends.....the poor kid is under the impression that the world is his friend. He has planned a huge party for "big kids only" and yet, there is no one to invite.......For the most part, I am a "tell it like it is" kind of mom, this is one thing that is too hard for me to tell......it is the part of being Matthew's mom that is the hardest. Harder than the tantrums. Harder than the mood disorder. Harder than the all of the other challenges. Childhood should be easy. It is about friends, kickball, playing etc......my boy needs a friend.
5. We are coming to the end of a great school year, only to be full of anxiety of transitions. Matthew wasted half a year in a horrible school placement. When will I know if he gets to go back to the same teacher for summer school and the fall? He needs her. Ok, let's be real.....I need her! She is a teammate for me. She is passionate about helping him to be the best matthew he can be. I hate change. He hates change....he deserves a year with a great teacher.
David is changing schools. This should be fine, as I don't think he is too connected to his current placement, but it is just another upcoming period of me training the new person about David, who doesnt say much, and takes years to understand.
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