I have lost so many friends because of AUTISM. I am so glad that we have the diagnosis don't get me wrong. But, it's a lonely ride in this world. No one wants to have their kids hurt, heck I don't want my kids hurt. So I get this...but it's lonely. Can't have group of friends when they don't understand why your son does things different. Can't have friends because you can't go anywhere without advance notice. Can't have friends because their kids can get hurt.
It's lonely...it's so very lonely. I just wish it wasn't so lonely....
Wednesday, June 29, 2016
Wednesday, June 22, 2016
The Day from Hell
The day started off wonderful. Miles woke up on his own and ate breakfast. He was pretty calm so I thought, "Today is going to be a GREAT day." But, I never know what is going to happen the few hours he will be at school. Or what is going to set him off because it's different every single time. I took Miles outside to get ready for the bus and he still a happy camper. We do our usual where he takes a toy all the way to the bus. When the bus arrived it was no his normal bus driver. But he didn't pay any mind to the change which made me relax. Especially since the bus attendant was the same person as it's been since June 1st.
Off he went to school for a few hours. During that time I spend a lot with G and M. G does her homeschooling work in reading, writing, and math. I play with M on the floor and G and I get a conversation going back and forth. I also mentally prepare for anything when Miles comes home. What I didn't realize was how bad it was going to get that afternoon.
Miles got off the bus at 11:45am, and I could tell something was off but didn't think anything of it (first mistake), I grabbed his backpack before we made it to the door as I usually do. I opened his bag to take out his communication notebook and read that he had a rough day. He didn't want to do anything that was asked of him. Also they pushed him to play with other kids in the class (Part of IEP). I thought, "Well, he's in a great mood." We went inside and he went off to see his siblings. I made lunch and he gobbled it down like normal. PB sandwich and chips with applesauce. It's his go to meal.
That is when hell broke loose. He wanted control of his sister and brother. He pushed his sister off the couch and I went over and said there room for both of you. Then sat in between the two of them. Sometimes that is enough this time it was not. He got up slowly and went over to a toy and threw it at his sister head. I blocked it and marched him into his room.
He started punching and kicking me and I kept blocking as much I could. I even held his hands to keep him to stop punching me. At that time his brother wondered in to be near me. Miles looked at him but didn't do anything other then scratch my arm. I held his arms again, not letting him to get me. He was screaming and kicking me at this point and it was raring its ugly head. I let go of his hands to move his brother out of the room and in that time frame...Miles reached and tried to scratch my eyes but made it to my cheeks and nose (which reminds me clip fingernails). I held his hands and told him that we do not scratch. I then let go and stood up to leave and he chucked a toy at my head. I started to walk away again when he charged at me to punch me. I carefully picked him up and put him back in his bed. Then grabbed his stretch blanket and had him pull. He usually relaxes with it this time...nope. He scratched me again in the face while pulling me closer. Finally, I called for reinforcement. As this time his sister and brother wanted to be near me so not only was I dealing with Miles but telling his sister to leave the room. Because I started to have to protect her from the situation at hand. I called my mom on the phone and she came home early from work. She took over for me while I took care of the other kids. Finally, he fell asleep.
She took my daughter who needed one on one attention to the store with her while I stayed home to work on dinner and be with the boys. Within two min after she left Miles was screaming in his room. I thought I should just leave him be and ignore him, maybe he will stop. (wrong again). He came out nice and calm and climb on my lap. I thought oh he wants to cuddle. (wrong again). He started to pound on my face with his fist. He had my arm trapped and I was nursing his baby brother on my other room. He at one point grabbed a remote and smacked me six times with the remote on my head. At this point I was crying. My mom walked in grabbed him and I finished making dinner. My husband then arrived at 5:30pm. He took over for my mom while we both finished. Finally, Miles stopped. He went from a 10 to a 0 in second flat.
All three of us adults were exhausted. I didn't want to do a single thing after that. I had bruises forming, found pieces of skin were torn off my face. I just kept thinking, "What am I going to do to get him to stop this violence."
Off he went to school for a few hours. During that time I spend a lot with G and M. G does her homeschooling work in reading, writing, and math. I play with M on the floor and G and I get a conversation going back and forth. I also mentally prepare for anything when Miles comes home. What I didn't realize was how bad it was going to get that afternoon.
Miles got off the bus at 11:45am, and I could tell something was off but didn't think anything of it (first mistake), I grabbed his backpack before we made it to the door as I usually do. I opened his bag to take out his communication notebook and read that he had a rough day. He didn't want to do anything that was asked of him. Also they pushed him to play with other kids in the class (Part of IEP). I thought, "Well, he's in a great mood." We went inside and he went off to see his siblings. I made lunch and he gobbled it down like normal. PB sandwich and chips with applesauce. It's his go to meal.
That is when hell broke loose. He wanted control of his sister and brother. He pushed his sister off the couch and I went over and said there room for both of you. Then sat in between the two of them. Sometimes that is enough this time it was not. He got up slowly and went over to a toy and threw it at his sister head. I blocked it and marched him into his room.
He started punching and kicking me and I kept blocking as much I could. I even held his hands to keep him to stop punching me. At that time his brother wondered in to be near me. Miles looked at him but didn't do anything other then scratch my arm. I held his arms again, not letting him to get me. He was screaming and kicking me at this point and it was raring its ugly head. I let go of his hands to move his brother out of the room and in that time frame...Miles reached and tried to scratch my eyes but made it to my cheeks and nose (which reminds me clip fingernails). I held his hands and told him that we do not scratch. I then let go and stood up to leave and he chucked a toy at my head. I started to walk away again when he charged at me to punch me. I carefully picked him up and put him back in his bed. Then grabbed his stretch blanket and had him pull. He usually relaxes with it this time...nope. He scratched me again in the face while pulling me closer. Finally, I called for reinforcement. As this time his sister and brother wanted to be near me so not only was I dealing with Miles but telling his sister to leave the room. Because I started to have to protect her from the situation at hand. I called my mom on the phone and she came home early from work. She took over for me while I took care of the other kids. Finally, he fell asleep.
She took my daughter who needed one on one attention to the store with her while I stayed home to work on dinner and be with the boys. Within two min after she left Miles was screaming in his room. I thought I should just leave him be and ignore him, maybe he will stop. (wrong again). He came out nice and calm and climb on my lap. I thought oh he wants to cuddle. (wrong again). He started to pound on my face with his fist. He had my arm trapped and I was nursing his baby brother on my other room. He at one point grabbed a remote and smacked me six times with the remote on my head. At this point I was crying. My mom walked in grabbed him and I finished making dinner. My husband then arrived at 5:30pm. He took over for my mom while we both finished. Finally, Miles stopped. He went from a 10 to a 0 in second flat.
All three of us adults were exhausted. I didn't want to do a single thing after that. I had bruises forming, found pieces of skin were torn off my face. I just kept thinking, "What am I going to do to get him to stop this violence."
Thursday, June 16, 2016
About Evaluation Process
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.
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.
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