Life with Michael

Michael had his Child Developmental Appointment for assessment of needs.  We walked in not knowing what was going to be suggested.  We walked out with the diagnosis of Autism Spectrum Disorder.  Ugh.  Now I knew a dual diagnosis is common with children with Congenital Myotonic Dystrophy.  We just didn't see Michael triggering enough of the bullet points for the diagnosis.  Shows how much I know.  I knew he had facial aversion until he knows you and sometimes even with us.  Yes, he has repetitive behaviors.  Spinning things.. Awesome!!!  Full body movements when excited, since birth.  Language, impaired but he has CMMD.  So what now?  100 day family kit for Autism with things to do each day.  A new Study to participate in about teaching kids with autism.  ABA therapy on top of even more speech.  :/  I am exhausted just thinking about it.  I am thinking to start it all after our vacation.  Lets go sit on the beach for 2 weeks and play and then come back to a new reality.   The orth

Michael doesn't know who Superman is, but he does want to fly.  Whether it is on a swing, in our arms or in the sky on a plane, he looks to be airborne.  He stops and watches as planes fly overhead and it is one of the first words he could say clearly.  He likes to be on his belly on the swing and have Steve lift him to the air.   Unfortunately Michael is not Superman and it becomes painful when reality hits.   Michael fell recently on a trip to the coast.  He was watching the spinning color flags and turned catching his brace on a stair.  He fell forward onto a stone step with his front top teeth.  They had to be removed. OUCH Next stop Utah.  Micheal went to his annual CMD study in Salt Lake City in prep for the drug trial.  There are actually 3 drugs in the works   First visit Speech therapy evaluation.  “Hi, what is your name?”  “His name is Michael, he  doesn't  say it.”  Michael, “Michael.”  Watch my jaw drop open.   Give him a book.  What is that?  He points and sa

I have been wondering what to write in this Blog.  I keep changing my mind.  Do I keep it joyful and light and concentrate on Michael and his accomplishments which bring us smiles every day?   Do I tell what is it like raising a disabled child and moving among the systems and the tears that go with that?   I have restarted this Blog many times now as this internal debate goes on.   Screw the hard stuff and explaining, we are going to Disneyland!   Michael is 3!  Wonderful heavy 3.  Kid is huge.  We were gifted with a wheelchair by my sister's generous neighbors for Michael to grow into.  After many many months of fighting with the system, we also FINALLY got him the wheelchair he needs now that is fitted to him and US.  What a battle for that.  It didn't happen before we made our trek to Disneyland with our wonderful CMMD family.  We are very thankful it happened though!   This last week we traveled to California for  a Myotonic Dystrophy Conference.  The day before the