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.
 

Dear Mommy to Miles

 Dear Mommy to Miles (age newborn),

 You just had your first boy....right now you are thinking if things are going to go in same road as it did with G. Rest assure he does go into the nursery and to be separated but only for eleven hours. You did amazing in your c-section. You even laughed during some it which in point made everyone laugh. Now, comes the fun part. You sitting there wondering how G is going to take her new role of sisterhood. Is she going to love her baby brother? Are they going to play together? Would she feel sad or worse lonely? 

  I am here to tell you that that beautiful bundle in the blue blankets is an amazing little boy. Momma, he is fun loving little boy. You made it to your goal of nursing tell he self weaned at 22 months. You loved every minute of it as you cuddled. You have hardships that you don't expect. But you make it, Momma. You still have an amazing little boy. 

 

Dear Mommy to Miles (age 6 months),

  Hey Momma it's me again. Right now you are trying to get Miles to eat that rice cereal that you yourself won't even try. Ginny is most likely running around the living room in pigtails trying to get him to watch her. He never does look at her or you for that chance. You notice how quiet he is compare to his sister but I see you brush it off because heck it's different having a boy after a girl. You don't think as you are rocking super fast in your rocking chair with him tight in your arms that something different. You tell people he is just having a sensory overload. Thinking it's normal for him to scream and fight to nurse. He still nurses though momma...you love those quiet moments of him in your arms. But you wish he would look up at you into your eyes. I feel your pain, I remember it well. Everyone says you see love in their eyes when they nurse and he never looks at him. Be strong and just love on him. 

Dear Mommy to Miles (age 1 year)

     Look how far you have come. A little more then a year ago you were wondering if you could be a mom of two plus go to school first time. It was a hard year, I remember it well. You were pushing through student teaching to make it work. You did it. Don't let you self doubt your self. I know it's hard to have the kids and living at your in-laws. I know. It's been an awesome couple of months though being able to stay home with them. To watch them grow and learn all because of you. Miles is now a year old and he has such a fun personality. Right now things are almost perfect. He finally starting to talk. I remember the day he completely surprised you by saying, "yellow" clear as day. This is year it's no so easy, enjoy this time you have with him right now. Things are going to change and you are barely going to make it to the next day. Know your little one loves you so much. He loves having you home to be with him. I can't think of a perfect time to be home with your little one then right now. 

Dear Mommy to Miles (18 months), 

    Momma, I see you sitting there crying in the corner of your room. I see your pain so evident on your face. I wish I could give you a big hug. This time you need to be strong for your family even when others out there are blaming you for your son behavior. Right now, it's so hard working full time with kids who can't verbally tell you what is wrong. Then come home to the same thing. You look at G and you say, "What did I do differently with Miles." Don't beat yourself up. You start making a doctor's appointment and he mentions autism. Which you knew he was going to say but now you know. Even though you have to wait two long years for help, I see your pain. You try hard to keep him from screaming through out the night for the fear of waking others. Momma, I see your pain as you rock him to sleep just hoping he would stay asleep for one night so you can rest your tired aching body. I watched you take the pregnancy test and cry because you don't know how you can have another when you have lost control of everything. Oh...but that baby you are carrying inside of you is so sweet and amazing little boy. He's the brother that your son needs to learn. I see you struggle being at work and I see you just want to delay returning home. Momma, I have been there. I was in your shoes. Take a deep breath because you got this. YOU GOT THIS! 

Dear Mommy to Miles (2 years), 

    It's such a huge relief when help arrives the sweetest way. Patti is amazing with Miles and she just fits into the household. Now, you are getting huge and it hurts when Miles kicks and punches you. He doesn't know that he is hurting you. You put on a brave face in front of the kids, your mom, and your husband. When inside you are dreading the fact you are having another boy. Another boy that you will fail. The wait seems to drag on to get Miles tested but you know it's coming. He has the signs. He finally, not screaming much...thank goodness. Your ears still ring from those months and months of the screaming. Enjoy having Patti in the house and listen to every word that comes out. She loves Miles like he is one of her own kids. She has his best interest. I see you worried about, "What if Miles hurts the baby?" "What if he hurts the baby enough to kill him?" Guess what I can rest your thoughts because M is a year old and no serious injury has come to him. Actually Miles loves his brother a ton. M can get away with things no one else cans that is how their relationship is. Remember take a deep breath. YOU GOT THIS! 

Dear Mommy to Miles (2 1/2 years),

    You watch how Miles is with his siblings and you wonder if they would ever play like normal kids. G tries so hard to get her brother to play with her and you cry for her when you are alone. You are still waiting for that call to say that he is going to be evaluated. It's coming it's coming. The school district came out and met Miles and you didn't like what they had to say. I can see the fire in your eyes knowing that they don't see the things you see. They say he has no OT needs and yet here he is running on his tip toes, needing a weight in his backpack. What do you see that they don't. It makes you nervous on how he is going to be treated in preschool. He is an amazing kid and you just want the best of him. I know...and answers are coming soon. Keep listening to Patti she is there to help as much as she can. 

Dear Mommy to Miles (3 years old)

        Right now you just got over HFM disease. It was a hard choice to cancel both kids parties but there is always next year. You keep saying we will have it in two weeks. It doesn't come and IT'S OKAY. June 9th is coming and Miles will get evaluated. Your answers are there and yet I need you to brace yourself for the impact. Sure you have known he was autistic since 18 months but the answers are going to cause your heart to break. To know for sure makes things ten times worse in your mind. Don't ask why but you cry and cry for days after. I wish I could give you a big hug and say it's okay. You still struggle a month later but it's not that bad. Miles preschool teacher is driving you nuts at this point. Because of her vague answers to know how he is at school. May is not a good month either. Miles ends up biting again and struggles with the routines being messed up over and over again. June is a better month. You will love Miles summer school teacher. She sends you pictures and tells you ever behavior he has. You find out that she does sensory breaks and he's so happy in the afternoon. Things are getting better. Keep your head up...I am here...

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....

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."

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.