So last Thursday, we were able to go up to Children's Mercy to get Miles evaluated. Before we got to that point we were referral to it then had to wait for ever to get a call. Once the call came, they sent me tons of paperwork to fill out and gather from his school and Infant Toddler program. I turned that in quickly because I wanted him to evaluated as soon as possible. We had to wait two years for the phone call and I didn't want to wait anymore then I had to. Then three weeks went by and they called to set an appointment up. As you recall we had to wait for a month to get the appointment. So, finally June 9th came and I didn't sleep very well.
I took with me though:
A Binder full of documents: Birth Certificate, social card, shot record, medical insurance card, All his Infant Toddler papers, All his IEP papers, All communication between his school year teacher, All communication with his summer school teacher, Letters from his past Nursery teachers, letter from his current nursery teachers, letters from friends who watch him off and on, letters from past sitters for events.
I also took Mile's straws and weighted backpack with some toys. Snacks were packed and drinks.
It was a lot to bring but we were told it could take all day or at least four hours. We were there from 9:00am to 2:00pm. When we walked in there were three people in the room. Each were covering something different. All three tested Miles and asked us a million questions. They at first saw Miles great side. Then they saw his humor side by tricking you, then at last he had a meltdown. He was hitting the people in the face, arms, legs. Trying to bite them, kicking them. Many of times did we want to intervene but we were told they could handle it. It was emotional exhausting for all of us. Then at last they left the room to talk to each other and go over scores. When they came back they had a grave face.
I think they thought I would react differently to what they were saying. She then said, "We are diagnosing him with autism." I just sat there looking at them with shock...because they diagnosis him with something I knew he had. I went in thinking they were just going to say that I was a bad mom. I have heard it from other people, "Oh he doesn't have autism your just a bad mom." So hearing that I was right was a complete shock and relief.
Now, don't think that I didn't want my son to not have it. I did. But I have already grieved for that life. They told us all the other things he has...the other disorders. It's a huge list for such a little kid. I will go over all they said he had later. Then came a surprising part to me..is Miles is super smart. I knew he was smart but didn't realize how much he was. You see they found out that Miles visual problem solving skills were at a five year old level. So in reality he thinks a lot like his five year old sister. Then...we found out that Miles fine motors were a huge problem and part of his frustration with the world. Miles fine motor is barely at a two year old level.
Which is a huge surprise as he been evaluated by two OT therapist. One with Infant Toddler who said he had sensory issues...which we knew but wanted it to be on paper. The other was when he started preschool with our school district. Oh he has no trouble with his motor skills, no sensory issues. Something tells me to believe the ones at the hospital. They said can you imagine...knowing how to do something and yet...you can't do it by yourself. It would be exhausting and frustrating. This hit me super hard as a mom because it's something I did not expect at all. I did not expect his fine motors being so far behind because no one mentioned it to me.
No wonder he throws meltdown after meltdowns by Thursday. No one understands his frustration to not do something. No wonder he plays with little kids younger then him this his own age. Then..of course his speech is really behind. Miles can barely say more then 20 words clearly. I know some of his gibberish words because I hear them all the time. But not everyone even Grandma, Grammy, my husband. They are always asking. So it has to be so frustrating so Miles.
We have another appointment next Thursday to go more in depth of his diagnosis. We also will have a CT and EEG ordered to check some things then blood work. In other words...here we go...understanding Miles.