I scheduled Miles appointment for him to get an EEG done. They said there was a possible chance he was having seizures that we were not seeing. Especially since I have seen him blank out once to several times a day for several minutes at a time. So, we were given the lab of an EEG. Just what a parent wants to hear is her son is having seizures. Well, I scheduled it for the 18th of July. They told me on the phone that he can not have any caffeine on Sunday or Monday. Which means no chocolate for him, that's the only caffeine he gets. Then they gave me bad news. Oh he has to go to bed three hours later then normal and be woken up at 4am in the morning. I didn't want to hear that part.
So, my husband took off the day as we were both going to trade naps all through Monday with each other. So, we had fun with the kids and kept Miles and his sister up till 10pm. My husband bought the kids mini vanilla shakes from sonic at 8pm. It was pretty easy keeping him up until the last 30 min. When he started to doze sitting up. So I would just tickle him. Finally, we put him in bed and he was out like a light.
My alarm went off at 3:50am. I dragged myself out of bed and got myself awake to keep him awake. I went into room and turned the light on....nothing still sound asleep. So I slowly started to talk and tickle him on his sides. He giggled and moved and then I said, "Let's go watch Super Why..." He jumped out of bed and was on the couch. I got him dressed and finished packing for our trip up. While he watched Super Why.
I figured the car trip was going to be the hardest part on keeping him awake. As we had an hour trip up to the hospital. But, we got McDonalds for breakfast (which for Miles is a sprite and lots of hashbrowns). By the time he finished breakfast we were there. No problem staying awake and he was in a great mood.
We waited by the door for what seemed like forever till 6:00am. Finally they opened the doors at 6:15am to get us in. We went in and soon we were in our room. The lady was really sweet and asked me a ton of questions about Miles. We then had to lay him down for her to glue the electodes to his head. As soon as she started to measure and mark his head Miles started to freak out. I gave him his straws and he threw them across the room. He screamed and tried everything for her to stop what she was doing. My husband had to lay on him to hold him still while I held his head still. Then the gluing and putting electrodes happened and he struggled even more. Enough that he was moving my husband.
Finally on the last electrode, Miles fell asleep. She bandaged his head so if he did wake up he couldn't grab them. We then let him sleep while she took data for 15 min. We then had to wake him up just enough for her to flash 20 sets of lights in his eyes. He went to a doze after that. Finally we could leave. Miles was awesome and handled it as much as he could so he was treated to a cookie and a chocolate milk in the cafeteria.
He fell asleep on the way home for a little bit. When we got home we had lunch and I had Miles lay down with him. He moved so much trying to stay awake then fell into a deep sleep. He slept 3 hrs with me.
We will find out in a week how things went.
Showing posts with label Children's Mercy. Show all posts
Showing posts with label Children's Mercy. Show all posts
Thursday, July 21, 2016
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.
Thursday, April 7, 2016
WE GOT THE APPOINTMENT!
Sorry, I am literally jumping for joy when I received a call yesterday from Children's Mercy. Here I was pretty down that we were leaving the comforts of Infant Toddlers Services on Monday. So when I answered the phone and it was Children's Mercy I was so excited. We set up the appointment for June 9th...and that makes me excited and sad. We just have to get to June 9th...
JUNE 9TH...
jUNE 9TH...
JUNE 9TH....
JUNE 9TH...
2 months and 2 days
63 days
1512 hrs
5443200 seconds
We can DO THIS!
JUNE 9TH...
jUNE 9TH...
JUNE 9TH....
JUNE 9TH...
2 months and 2 days
63 days
1512 hrs
5443200 seconds
We can DO THIS!
Thursday, March 17, 2016
After Vacation...comes...meltdowns
So, I was thrilled when I got home to find...a new packet from Children's Mercy. In case you haven't guessed we are in the middle of getting him evaluated. We are pretty sure he has autism in some sorts but we don't know what and we need help. So, now I am working on this mountain of paperwork before the end of Spring Break. I am hoping his teacher who has some paperwork to fill out will be able to get back to me soon after Spring Break. The sooner I get it in the sooner he will get in.
So, Tuesday, Dad had to go back to work and Miles...decided that he was going to let loose his own struggles. The struggles, we can't see and don't understand. At eleven o'clock he went into a huge meltdown. He was throwing his heavy cars at my head, punching, screaming, pulling chunks of my hair out, kicking me. I had to restrain him to just get him to relax. Finally, my mom took over so I could breath. This lasted for 2 1/2 hours it was a huge struggle and I cried. I cried not because of what he was doing to me. But, because I didn't know how to help him let go of his own struggles.
Then his therapist came and helped him for an hour. Once she was gone around three o'clock he was in another meltdown. Just as bad as the first one. At this time my sister was here and I could see her watching and learning. My mom took over for a bit and then my sister offered to help. After 2 hours he fell asleep from exhaustion.
When his dad arrived he had another meltdown. This one lasted an hour and it hurt to know that we couldn't help him.
I know part of it is the schedule change. He is used to going to school in the morning but since it's Spring Break no school. It also means that next week we will be struggling to get him back on school schedule. Everything changes and it's hard for him to not be on his schedule.
This weekend we have a wedding rehearsal dinner tomorrow and then it's my brother-in-law's wedding. It seems like we are getting very busy as of lately.
Question: What techniques do you use for meltdowns?
So, Tuesday, Dad had to go back to work and Miles...decided that he was going to let loose his own struggles. The struggles, we can't see and don't understand. At eleven o'clock he went into a huge meltdown. He was throwing his heavy cars at my head, punching, screaming, pulling chunks of my hair out, kicking me. I had to restrain him to just get him to relax. Finally, my mom took over so I could breath. This lasted for 2 1/2 hours it was a huge struggle and I cried. I cried not because of what he was doing to me. But, because I didn't know how to help him let go of his own struggles.
Then his therapist came and helped him for an hour. Once she was gone around three o'clock he was in another meltdown. Just as bad as the first one. At this time my sister was here and I could see her watching and learning. My mom took over for a bit and then my sister offered to help. After 2 hours he fell asleep from exhaustion.
When his dad arrived he had another meltdown. This one lasted an hour and it hurt to know that we couldn't help him.
I know part of it is the schedule change. He is used to going to school in the morning but since it's Spring Break no school. It also means that next week we will be struggling to get him back on school schedule. Everything changes and it's hard for him to not be on his schedule.
This weekend we have a wedding rehearsal dinner tomorrow and then it's my brother-in-law's wedding. It seems like we are getting very busy as of lately.
Question: What techniques do you use for meltdowns?
Thursday, March 10, 2016
Family Vacation
It seems like my family likes to take vacations when the time is about to change. This coming week is going to be rough on Miles. I already know and fully prepared for the meltdowns. It's going to start tomorrow for us. My husband won't be home tonight till after the kids go to bed. Which is normal and Miles expects it. My husband has school once a week and doesn't get home till late. But, tomorrow, it's my brother-in-laws's bachelor party. So, another night that my husband won't be home to help pick up the pieces that were made while he was at work.
I don't know who is not looking forward to it me or Miles. On Fridays, Miles often spends a lot of quality time with his dad on Friday nights playing video games in my room. It's a way for the to bond and Miles to just relax after a busy week. Then early on Saturday we are heading out on our vacation to stay in a hotel for a couple of nights. We are going to a Children's museum. Which can have a huge awesome time or can go down hill really quick. I have already emailed the museum for some ideas what they provide for a kid who is like Miles. No reason not to ask so that way I can be ahead on it. Then we will be going to the local zoo. Which is huge and should be lots of fun. Miles likes animals so it should be nice. Hopefully, it won't be too crowded and won't rain on us. Then we will visit the local temple to show the kids it (we are mormon). Then we will head home. We plan to swim in the pool each evening that way the kids just crash.
Our last vacation was great, until Miles woke up with a horrible cold. He kept us up all night long coughing and wheezing. Also...we had to wait for over an hr for food that should not have taken that long at a local place. So we are hoping that this vacation will be great. My mom is tagging along with us like she did last time. That way everyone can help with a kid or if need be two people can help with Miles.
So not only do we have our vacation, but when we return we are going to be smothered with my husband's family. His brother Jimmy and family (three kids) and Sister Johanna and family (two kids) are coming in town. Not sure if his brother Andy and family (three kids) are coming as well. Or if his older brother Tony and family (three kids on earth) are going to be stopping in. But everyone will be here and it gets crazy when they are all together. None of them really know what to do with Miles and his cousins don't either. So, Miles often gets sensory overload around them. But they are all in town because we will be going to the temple to see my brother-in-law Scotty and his soon to be wife Jenny get married for all eternity. Then we have the wedding reception. Our plan is that we will all go the reception then return home to get Miles in bed as close as to his bedtime as we can. My mom said she will stay so we can head back to the reception. It's going to be a busy week.
Not only that but I am going to be watching my niece Abbi during the week as her sitter is not watching kids that week and no school.
In other news. Miles has been in the oddest mood lately. Not sure if it's the rainy weather causing him to be like this or if this is just his current mood. He's been close to meltdowns a lot lately and it makes me sad. I feel for him because he doesn't want to be this way. He doesn't want to wear clothes at all which is different usually we can get him in some clothes. He doesn't want to be touched in the evening which is different for him. I just wish Children's Mercy calls soon to get him officially evaluated.
My goal is to get him evaluated before his IEP meeting on April 8th. One step at a time is been my motto. One step at a time.
I don't know who is not looking forward to it me or Miles. On Fridays, Miles often spends a lot of quality time with his dad on Friday nights playing video games in my room. It's a way for the to bond and Miles to just relax after a busy week. Then early on Saturday we are heading out on our vacation to stay in a hotel for a couple of nights. We are going to a Children's museum. Which can have a huge awesome time or can go down hill really quick. I have already emailed the museum for some ideas what they provide for a kid who is like Miles. No reason not to ask so that way I can be ahead on it. Then we will be going to the local zoo. Which is huge and should be lots of fun. Miles likes animals so it should be nice. Hopefully, it won't be too crowded and won't rain on us. Then we will visit the local temple to show the kids it (we are mormon). Then we will head home. We plan to swim in the pool each evening that way the kids just crash.
Our last vacation was great, until Miles woke up with a horrible cold. He kept us up all night long coughing and wheezing. Also...we had to wait for over an hr for food that should not have taken that long at a local place. So we are hoping that this vacation will be great. My mom is tagging along with us like she did last time. That way everyone can help with a kid or if need be two people can help with Miles.
So not only do we have our vacation, but when we return we are going to be smothered with my husband's family. His brother Jimmy and family (three kids) and Sister Johanna and family (two kids) are coming in town. Not sure if his brother Andy and family (three kids) are coming as well. Or if his older brother Tony and family (three kids on earth) are going to be stopping in. But everyone will be here and it gets crazy when they are all together. None of them really know what to do with Miles and his cousins don't either. So, Miles often gets sensory overload around them. But they are all in town because we will be going to the temple to see my brother-in-law Scotty and his soon to be wife Jenny get married for all eternity. Then we have the wedding reception. Our plan is that we will all go the reception then return home to get Miles in bed as close as to his bedtime as we can. My mom said she will stay so we can head back to the reception. It's going to be a busy week.
Not only that but I am going to be watching my niece Abbi during the week as her sitter is not watching kids that week and no school.
In other news. Miles has been in the oddest mood lately. Not sure if it's the rainy weather causing him to be like this or if this is just his current mood. He's been close to meltdowns a lot lately and it makes me sad. I feel for him because he doesn't want to be this way. He doesn't want to wear clothes at all which is different usually we can get him in some clothes. He doesn't want to be touched in the evening which is different for him. I just wish Children's Mercy calls soon to get him officially evaluated.
My goal is to get him evaluated before his IEP meeting on April 8th. One step at a time is been my motto. One step at a time.
-Wish me Luck-
Kendra
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