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 

This Week

I can usually tell when Miles is coming down with something or if storms are going to be popping up around our house. Miles has meltdowns a ton and he is hyper and craves sensory more then usual. It's been going on all week. By the end of the day, I just want to crash. It's been hard because we have had storms so I didn't think anything of it. Actually, right now it's literally raining all day long. Miles slept horrible last night just kept crying in his sleep and when he was awake. This morning he woke up so I took over and he just cried. He barely touched his breakfast either this morning which are his favorite Muffins. So I figured today was going to be a bad day. I already planned to have pizza tonight so I didn't have to make anything. Miles would often just start crying and complaining his foot or stomach hurt. He then crawled into my lap and took a cat nap. During that time I felt his head and took his temperature and it was 99. So I knew he wasn't feeling well. He woke up and laid on the couch then started to sob. He sat up to cuddle with me again and then he threw up.

Everything made sense to me of what we went through with him this week. The meltdowns and the sensory seeking. He was getting sick.

Meeting with the School

Since Miles was diagnosed with autism and we had all evaluations to see what is next for our amazing son. We needed to call a meeting with the IEP team at the school to see where was next for Miles.  I went in hoping that we were going to be removed from his current preschool to the autistic preschool where he is able to get his ABA therapy he needs. My husband couldn't take off for it as we have a funeral this week as well. But my mom made it work and was able to input in much needed info to get the school on track. 

What we found out about Miles at the meeting is:

1. Miles has a Autism Specialist now evaluating him in the classroom. She is using VB-MAPP and another program to see what goals he needs at this moment. Also to set up his ABA therapy...

2. OT therapist is now Officially evaluating him seeing all the into we got from Children's OT therapist. 

3. Miles is smarter then everyone in his class which makes him extremely smarter then the autistic preschool kids. 

4. Speech loves how far he has come over the summer. Also started visual schedule in the classroom which they are seeing awesome progress from. 

5. Miles is reading to learn how to read. 

6. He past all of his IEP educational goals. He needed to know his colors and shapes. Which he is now surpassed. 

So, where does that lay us. It leaves Miles in a really weird place since educational wise he is passed everyone in preschool. But socially he needs a lot of help as well as social. Though he is trying to play with others now. We called for a new evaluation to see if his placement in the school is the right one. So he is going to be evaluated yet again with speech, OT, and VB-MAPP. Then we will have another IEP meeting to see where he is at and what his new goals need to be. His teacher is even helping me make an visual schedule at home to use. Miles loves using it and it helps him transition which he has huge problems with. 

They are still not seeing behaviors in the classroom yet but I am seeing them at home big time. The teacher and autistic specialist is going to put lots of sensory activities through the class for Miles to help his sensory craving ease. 

                                                       -Kendra 

Autism at Pro Baseball Game

So, we had the pleasure to take our kids to their first baseball game. I was excited for the kids to experience their first game, but a part of me was super nervous on how well Miles was going to handle being in one spot for a long time, the crowds, and the energy of the game. Well, so I started to prepare him and myself with what we need to do to accomplish the game. We made it a goal to say that we will leave if things turn for the worst. So, let me share some of our tips.

1. Be prepare to leave 
   We made it a goal to leave when things start turning dicey. We even told my daughter that anytime we could just leave the game. The goal was to have fun not have the worst experience of our lives. We were going to leave on a good note.

2. Baseball Cap, sunglasses, or a hoodie
    For Miles the baseball cap helps block out other things going on around him. He also uses sunglasses and hoodies at times. Though he just used the baseball cap to help him pull away when he needed it.

3. Call the stadium before hand. 
      I did research before the game of things that we can bring inside to if they have any procedures for children/special needs. We were in luck to find out that they have a special protocol for children. They have where the kids get a bracelet with their parents phone number as well as their seat. So we made sure to stop by there first.

4. Special Snacks and Drinks
    We brought different snacks and drinks that my kids don't normally get. They loved it and had a blast.

5. Have Fun and Take Lots of Pictures
    We had so much fun not worrying about anything. When my husband went to get some things from the food line. He took my son with him so that he can walk and get some movement. The attendents were awesome and helped us down the stairs. We also took lots of pictures so remind him of what fun we had as a family.

Miles First Day of Preschool

Miles started Preschool on Monday of this week. We have been prepping him since July 1st that school was coming back. By the time we were getting ready for school he was so excited to go. He shot out of bed and he was ready to go. He had a huge smile on his face the whole time. Which was awesome. He got on his new bus...

When he got home he told me he missed me which made me happy to hear. I was glad to see the great report. We did have a huge meltdown that night with him but we made it by. I can't believe we have one more year of pre-school after this.

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?