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.

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. 

July 4th

So, the only thing we had planned was a picnic with some friends and family for the fourth. We were going to play everything else by ear. It was nice to have family over. My sisters and brother in law are awesome with Miles in ways I wish others were. Miles had to show them his room and the rest of the house first then they played rough. At one point my brother-in-law hid from everyone and Miles with the other kids had to go find him. Of course they were scared as they knew he will jump out of them. Miles led the charge but then one of them would squeal and all run away from where he hid.

The thing Miles loves to play is hide and seek. He has always loved playing it since he was a baby because he loves when people pop out at him. He sometimes will work to play hide and seek. Of course he hides in the same spot every single time. Anyways, it was nice to have everyone over for awhile. Miles eat his lunchable we provided because we know he wouldn't eat anything else. After everyone left we took that time to relax around the house before heading out to see fireworks.

As 1. Miles goes to bed at 7pm and fireworks start at 9:30ish. So, we decided that if all the kids fall asleep we were just going to miss the fireworks. So, as we waited home before we need to get out the kids watched the old Ghostbusters 2 movie. (like I said Miles loves being scared) so he squealed and just relaxed.

At 8:15pm we headed out to find a location to watch the fireworks. We wanted it to be easy for us to just leave if by chance Miles does not handle it well. Well we found the perfect spot and my friend parked next to us. The kids played hard by running up a huge hill by us to us down bellow. Miles wrestled with my friend Kait. He threw a ball and tried catching it. He threw pop pops on the ground. He was obsessed with a dog that was near us. He kept going to pet it which was fine with the people. Over a year ago Miles was bit in the face by a dog because he squealed at it. So he is usually uneasy around dogs. He loved this golden lab.

Finally at 9:45pm the fireworks started. Each one that pop up Miles would yell, "Boom..." It was great seeing that he enjoyed it as much as we did. After it was all done we headed home. Before we got home in the five minutes..he was sound asleep. Slept through my husband putting him in bed and changing his diaper. He slept from then to 6am.

The next day was rough in the house as all three kids were extremely tired. We just took it easy.

Hope you guys had an awesome 4th.

Autism is Lonely

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....

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!

Saying Goodbye is Hard

So on Monday, we had to say goodbye to our Infant Toddler therapist for Miles. When she arrived the first time we met her when knew she would make a perfect fit for our families. Not only was she helping Miles but she was helping the rest of us understand a little more about him.

When Miles was close to two years old, he was at the point of not speaking at all but screaming on top of his lungs 24/7. He would scream when he was happy, sad, angry, excited, anxious and all in between. Anytime, big sister would cry or whine he would charge after her no matter where she was in the house and bite her. We would spend most of the day in an all out struggle with him to eat, sleep, and even to not have a meltdown. His meltdowns were never shorter then two hours and by that point we were so beaten up by him it would cause us to be in tears. So when Patti arrived it was a godsend.

She helped us right off the bat to give us tips to get him to stop biting. As his bites were leaving scars and to show us how to get him to stop kicking me in the stomach (I was pregnant with #3). The biting went away for the most part. He fell in love with her that first day. She helped us with meal times and bed times.

She gave us so many good resources that helped us understand him. It's hard for a parent to ask for help but it was needed. She knew when it was time to pull in a speech therapist and OT therapist. She loved Miles and we always made sure to work with her each week. All three of my kids loved her and she has given my daughter tips in dealing with her brother.

So Monday, it was hard to say goodbye. Goodbye to that part of our lives that we had. Now, we don't have any therapies coming to the house and that in itself is hard. We don't get those tips anymore and those little helps to keep us going.

I have to say, I am so blessed to have Infant Toddler Services rush to get him evaluated for their program. It was hard to hear that there was a two year waiting list from every hospital in KS to evaluate him when we felt like our lives were falling apart. Infant Toddler gave us hope and send us our savior Patti at the time we needed the the most.

Next Chapter of ours lives is IEPs...

Extended Family Time

On Thursday morning, Miles was able to go to Paternal Grandma's house early in the morning. I got him all dressed in his green shirt. Well, at Grandma's there was his five cousins as well to play with and celebrate Saint Patrick's Day. Well, he had a great morning playing. The only rough part of that was he didn't want to wear pants, shoes, or even diaper to come home in.

Friday night was the rehearsal dinner for my brother-in-law and his bride. Miles was having already a bad day and I was dreaded what was going to happen. All the way to the church he was screaming and trying to get out of his car seat. I carried him into the church and took him away from everyone to calm down. Trying to keep myself calm and not stressed out over the situations. Finally he was calm and we found the rest of the group. Well, Miles was chasing his sister all over and at times i had to step in to calm him down. Finally, we brought food because no way was Miles was going to eat what was provided for dinner. Miles ate his piece of pizza and played with his cousin. Then he just randomly hit his cousin with a toy. This happened not once but three times. Then he had a huge meltdown in front of my family but also my soon sister-in-laws family as well. It was hard to not cry because here I was dealing with this. I was already nervous about this whole thing and how he was acting. My husband took him out to another room to calm him down. That night, with tears in my eyes I apologized for the way he was acting. I felt like my son (who I shouldn't have brought at all) ruined the night with his behaviors. I then messaged my sister-in-law and apologized for the way Miles kept hitting her son. It made me so uneasy about the wedding.

Saturday morning, we tried to stay in our routine as much as possible. Hoping that it would help Miles adjust to the wedding better. We went to Sam's like we normal and he flipped out going to the car. We then headed to the Temple to see him get married. My mom tagged along to take care of the kids during the ceremony. After the ceremony in the cold wind we stood to take pictures. Miles did great during the pictures and I thought hey this might work great. That evening we headed to the reception and guess what Miles had a fabulous time running around and playing with kids. We stayed past his bedtime and he was awesome.

Sunday, we headed to church and things were going good. Miles kept pointing at someone's dress and would not stop saying, "Mickey Mouse." Which they were not Mickey Mouse it was lobsters. He just kept pointing. So I mentioned for his Dad to take him for a walk with his weighed backpack. Well, I later had to leave to nurse the baby and heard Miles screaming on top of his lungs. Meltdown. Finally, I was able to trade with Dad and got Miles calmed down and took him to his nursery class where he flipped out. So I had him move chairs around in the hallway and got him in Nursery. Found out that they had a little rough time but nothing the adults couldn't handle as they have a child of their own who is autistic. Was able to talk to another autism parent about Miles and his thoughts. (I am always seeking for more).

We then headed home to rush and change clothes. Miles had a meltdown so we decided to leave him in his clothes. We then headed to my in-laws and Miles played and threw toys many times at me and his brother. Everyone except a small amount of us stayed at the house and I stayed behind to be with Miles because no way I was going to let him tour a house. We had a great evening and came home.

Yesterday, we went back to my in-laws to spend some more time. Miles was in a great mood and I swear something switched inside him. Anytime he got near his cousin his cousin would freak out. I felt really bad for Miles who wanted to play. It was hard not to cry knowing that this was how Miles life is...when he actually wants to play kids are scared of him.

Question: How do you explain it to two year olds?

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?

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.

-Wish me Luck-

Kendra 

Scary Part

So, like I have said in my story. It's been a long road with Miles and we have been with Infant Toddler Services since last year. But, just like everything it must come to the end. The end is so close now and it's scary. We are in midst of a transition from ITS to the local school district since December. I had the meeting with the school district and they met Miles. Of course, Miles was on his best behavior for the meeting. So, they didn't see his true colors and they told us they will evaluate him in a preschool setting for two weeks. They also told me all that will be evaluating Miles, nothing about OT. Which for those who know my son, he has some huge sensory needs. Which they thought he didn't have. (Insert Head Shaking). I even gave them examples of Miles and his sensory needs. Nothing, well I was going to force the issues then by having the OT from ITS evaluate him before the transition was complete.

Anyways, Miles started preschool through the school district first week of February. I was walking him and his siblings to the school to drop him off. He did great the first week and second week. They told me he was doing wonderful. Yet, as soon as we rounded the corner from the school from pick up. Miles would start punching his sister and screaming. I was dreading the fact that he was perfect for them and yet wasn't for me. One of my worries was they were going to deny him into their program. I was also worrying that maybe people were correct that I was the WORST MOM in the World. But, they never told me the end date and it was starting to be a challenge to even get him dressed in the morning. He hated going to school and lots of times I had to call my mom to come take him. At one point he worked himself out of his carseat and punched the back of her head while she was driving.

So now, Miles takes the bus to and from school. Most morning it's a struggle to get him on the bus. I am pretty sure his anxiety of leaving the house is the cause of it. We are getting there and finding new ways to do things with him. I just prep him a lot starting the day before that tomorrow is school and the bus will come pick you up. Then I walk him to the bus with his tablet. Some days it works some days it does not.

Lately, Miles has become very violent. Sometimes there is a reasoning behind it such as Sister is playing with his toys and then there are no reasons at all. Such as yesterday he decided to throw two water bottles at his little brother's head. Or Friday, when he didn't want to tell me he didn't want to hang out with Grandma so he smashed his tablet on my head which cracked his screen.

Then there are times that he has awesome day playing nicely with his sister and then he has a complete meltdown later. Usually, there are no time or reasoning to his struggles.

Yesterday, I saw his meltdown coming all day. I tried to help calm him down by giving him lots of body squeezes. It's where I just hold him pretty tightly in a hug. But, it didn't help his struggle what was to come that evening. That evening after dinner, after therapy, Miles blew up. What did he blow up...clothes. He rather run around the house with just his diaper on. He didn't want to wear clothes or to be touched at all. I held him for a bit and he was just blowing up. He punched and kicked. I tried my usual redirect that work some times. Nothing worked. His father held him whole he kicked and scream. He begged for me and I was sitting right next to him holding his hand. Talking in a soft voice. Finally, we took him into his room in the dark and I sat on the floor.

I was punched in the head, kicked in the ribs over and over while he let himself go into a long meltdown. I sat there with a blank face knowing that any reaction would cause it to be worse. I just wanted to cry. Finally, my mom took over for awhile to try her ways to calm him down. I had to go into my room to gather my own emotions. I have sob in the bathroom more times then can count just feeling for my son.

It's those times, I wish I could help him battle his emotions and help him out of his sensory overload. Finally, two hours later he calmed down and wanted to be loved on. He says, "You don't love me." We just remind him that we love him over and over again. That's the hardest thing for me is when he says I don't love him. Because I love him to the moon and back.

-Forever Surviving-

Kendra 

Why Blog

Why am I blogging this, I am sure you guys are wondering. Because, it could help another parent out there going through the same or similar struggles. I have been very blessed having people come into my life to help us find the next step in this process with Miles. Another is it's hard as a parent to watch your child struggle with the things around him. It's also hard to watch my other children who are four and eight months old to understand their brother and wonder why he does things he does. I am learning...just like all parents. I have found that some things work and some things don't work for my children. Heck...if I could I would be homeschooling him but right now it's not an option.

Another reason is...to help those who judge us out in public. I have heard the familiar conversations that most parents who have children like this, "Why don't they spank his butt." "They need to discipline that child." "He is so spoiled." "That Mom does not know how to be a parent." "That child should never be allowed in public." "That kid needs to be in a psyc ward or an asylum."

Can I tell you something. It hurts. I physically hold it together and have to walk away because the tears start to fall. Some I have heard from family members. If this blog helps to educate someone then it's great.

So that is why I have created this blog.

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