To My Friends

This is an extremely hard post to write because of my feelings right now. I have to remember that even my friends don't understand what it is like to live 24/7 with an autistic child.  They don't hear my thoughts that I have and all the many challenges that we face living with someone who has autism let alone a three year old who has autism. So this is my letter to them about why I choose to not take my son to the ER after he broke his toe instead waiting the next day.

Dear Friends (I hope you are still my friends),
     Like I said this is hard to put in words how I am feeling and my thoughts of what happened Sunday night into Monday. But I prayed about it and felt that I needed to type my thoughts. I know you have my son in your thoughts and his well being. I really do appreciate it. I need to back all the way up to Saturday night. Miles was up all night long crying and having a really hard time sleeping. We then went to church Sunday and knew he just wasn't having a good day.

He didn't want to go to class and his nursery teacher pretty much sat with him in the hall all of Sunday. We then went home and relaxed before we had to leave again to head to my in-laws. At my in-laws there is a total of six kids under five years old. Then we have nine adults in the house. Miles was running like mad attacking his Uncles and playing with toys.

We had dinner where Miles couldn't sit still he had to keep moving as he was shoving his lunch-able in his mouth at lighting speed. I knew that Miles was having sensory issues because he couldn't sit still he had to stay moving. I had a feeling we were going to have a huge big blowup before bed.

After dinner I was sitting on the floor while us adults were talking and finishing dinner.  Miles started to run around and he came over and and jump over my leg like he sometimes does even at home. A few minutes later he came back and jump over my legs but didn't quite make it. He fell to the ground and was screaming. I pulled him into my lap and comfort him and looked him over and saw nothing that was concerning. He then stood up and started to cry again so I knew he hurt his foot more then I thought and had him sit with me. He wanted to go with his cousins, Aunts, Uncles, siblings, Grandparents on a walk. Anytime he stood up he started to cry and he didn't want to stay.

So I picked him up and carried him to a stroller and pushed him to the park. At the park he got out of the stroller and ran around the park. He went down the slides and swung on the swing with no problem. He showed no distress in having any pain. I put him back in the stroller and we headed back to my in-laws house.

When we arrived I carried Miles inside the house where Miles decided he rather be at the park. He took off towards the front door to leave. I pulled him into the house and he started to have a massive meltdown. He started to punch, kick me with both feet, wrap his arms around my neck from behind me to choke me, he started to pull my hair. All the while my husband tried to get the others into pjs and in the car. Miles screamed and was hurting me while he was on his feet or using his feet to kick me.

We finally got into the car and went home. Once home I carried Miles into the house and set him down where he complained his foot hurt but wasn't limping. Then if we were watching him he started to limp. We gave him some pain medicine and went through the process to get him to bed after he calmed down out of his meltdown.

Stephen and myself discussed if we needed to take him to ER to get his foot checked. We both agreed that taking him that night would be more sensory overload on Miles then need be. His foot would be fine until morning when we could take him to the walk-in. He was going to be fine on pain meds and get the sleep he so desperately needed. If we took him to the ER he would be struggling all through the x-rays where we would have to restrain him. Who knows how long it would take in the ER to get him through it all. He was doing okay walking on it for the most part but we would carry him if it seemed to be bothering him.

He tossed and turn during the night but he got some great sleep. Monday morning, we awoke and he started to limp and cry that his foot hurt. So, we agreed after his dentist appointment we would take him to walk-in. I carried Miles in my arms through the dentist appointment and he was doing great. He was his normal happy self and was playing and watching tv. Even had some icecream at the dentist. I then took him to walk-in and found out there was an hour wait which wasn't a big deal. When we got into the back room Miles did awesome and let the doctor feel and look at his foot. He also listened to the direction of the x-ray tech and held still for each x-ray they took. I didn't have to hold him or restrain him he did it all on his own.

Miles is only been on pain meds for bed at night but other then that you can barely tell his foot is broken. He is jumping, running, spinning self and play fighting. He wears a walking boot to help him walk normal so it can heal normal. The doctors told me it didn't matter when I brought him in to get it looked at.

You see, Friends. You only heard a little bit of what was going on. I made sure he wasn't harming it and was not in pain. We carried him everywhere until he was looked at. Stephen and I do have the best interest of Miles in us. When Miles is having a sensory overload any touch sets him off and since he was having one it was best to wait as lots of people would be touching him that he didn't know. When Miles is having a sensory overload a single touch is like an electric shock to his system. It literally hurts him no matter how gentle it is.

I really hope it doesn't ruin our friendship because it's such a small little argument. I do like having your friendship and I hope you enjoy having mine.

Kendra 

Autism at the Zoo

We have always enjoyed the zoo even when Stephen and I were without our three kids. We often would go to one to walk around and look at the animals. Zoos are always changing as the animals change and have their own families. So when Miles was a baby we took him to the zoo a lot. But that's because we had a small one that was free to go walk around in our little town. So this year we decided to get a family membership to the zoo. So, how do we handle the zoo with Miles. 

1. Take someone with you to help.

       We are so lucky, to have my mom with us and willing to go with us to the zoo. We play tag team where each child has an adult that is with them. That way if one child is slower then the other the adult is with them. If G needs to go to the bathroom there is an adult with her. If Miles needs to take a break there is an adult with him.

2. Rent a wagon or stroller or bring your own

      The zoo is a large place and heck any adult gets tired walking around looking at animals. It's also nice to have to put your things in so you have easy hands to grab a child from running or walking off with someone that is not apart of your group. 

3. Weighted Backpack

      Miles doesn't usually elope, but there is so much to look at the zoo that he could take off. So we carry a backpack that Miles wears part of the time with some of his snacks, fidgets, and usually a water bottle (for weight and for drink). If we see him get anxious we usually put the backpack on him to help ground him for a little bit. 

4. Fidgets 

      We bring straws as Miles fidgets. Miles picks his skin on his hand and feet when he is anxious about something or when something is bothering him. We found out awhile ago that if he has a straws he won't pick. So, we always have straws with us and it's just regular plastic straws that you get at any fast food place. Miles loves to bend them and then straighten them over and over again. Also it makes it easy if by chance he loses one to find another one just like it. 

5. Don't make a Goal

    We don't make a goal about making sure we see all the zoo. We don't even make a goal to see everything in a section. We just go until we know the kids had enough. Sometimes we can get through more then others sometimes not. With Miles we never know. 

6. Get on the Tram and Train

     Let feet rest. Pay the extra to get the bracelet for these. It will give your feet a rest and it's a good time to hydrate and snack. Plus, most autistic kids like movements so it can help them regroup as well. 

7. Make sure to see your child's favorite animal at least twice

     Miles right now is really into the penguins. So we try to make sure to visit the penguins twice before we leave. Miles will actually watch them for over an hour and we usually let him watch them until he has had enough of them. It really helps him keep calm. We usually see them before anything else and before we leave. 

I hope some of these tips help other parents out there. There is no reason to be stuck in a house all day. It's also good for the kids to get our and be able to see the world around them. We love doing things as a family and just because Miles is autistic doesn't change us doing things as a family. We just make it work for us. 

Bedtime Routine

So, we used to have a lot of trouble with Miles sleeping. He always struggled sleeping even as a infant since he was born. He slept with me and his sister for the first year of his life. Stephen (Miles Dad my husband) used to work nights so it was just easier for me to have the kids sleep with me. When Miles turned a year old we slowly got him into the crib and G was already sleeping on her own in another room. We were living with my in-laws and my husband was now working days. It was time. He fought it like crazy and still wouldn't sleep through the night. He would wake up for hours screaming non-stop waking the whole house.

Then we moved into our house and it was still rough. He still was fighting sleep where someone would have to sit by his bed and wait till he crashed. Then literally spend all night in his room with him. Finally, we came up with a strict routine and it's worked for us. Miles is now sleeping through the night most nights and he goes to bed almost instantly. Score for us.

We decided that for our family our kids would be going to bed at 7pm every night. It gives us adults time without the kids and they get better sleep. We found out that no matter what time we put them to bed they still get up between 5-7am in the morning. So here is our family schedule for bedtime.

5:30: Dinner
6:30: PJs on
6:35: Play
6:50: Scriptures
6:55: Prayer (the kids take turns)
6:58: Goodnights to everyone and choose who putting who to bed
7:00: Bed with a small story and a water bottle
7:15: Kids are looking at a small stack of books quietly in the their room
7:30: Sleeping like a log.

Like I said it works well for us. Miles sleeps with lots of blankets on him to help ground him and several pillows to help with his acid reflex (at least what we think he has).

What's your bedtime look like?

EEG Done

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.
 

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.