I can't die...

When I first heard Nate's diagnosis from the neurologist, my first thought was, "I can never die."  Truer words have never been spoken.

This past April, I was diagnosed with breast cancer.  It happened very quickly.  I went from noticing something on my breast to a double mastectomy within three and a half weeks.  I started chometherapy treatments a month after that and will begin radiation next week.  My prognosis is good, but I can't begin to tell you how worried I was about the boys.

Nate has handled this very well.  I think he is so much in his own world that he didn't realize I was in bed most of the summer.  He was happy with his job at TJMaxx and was staffed most of the summer.

Nick was constantly worried.  We tried to keep him busy by taking a summer school class and with football practice, but he worried and became angry.  He would often ask me, "How many cancer cells are left in your body?"  I could only tell him hopefully none.

Noah had a rough summer.  He didn't understand why Mommy was always in bed and he wasn't allowed in there with me.  There were days that I was so sick from the chemo I couldn't have him laying on me.  We had him staffed almost every waking moment, but he still could sense that something was wrong.

Since I knew I would lose my hair, I gradually cut it shorter.  I thought this would make it easier on the boys.  When it was time to shave my head, we did it at home and let them watch.  We tried to make it as normal as possible...."Mommy is getting a haircut."  Noah loved to sit next to me and rub my head.

I tried to go start the school year teaching, but after 2 days, I just couldn't do it.  It was too exhausting.  I came home from school those nights and went straight to bed.  I couldn't parent my kids (who need a lot of parenting).  I plan to return to school at the beginning of next semester.

It's been a hard six months.  Many times I wanted to quit the treatment because it was so hard.  I am glad I didn't quit.  I am their advocate.  I am their fighter.  I am their warrior.  I am their mother.  I will not let this cancer prevent me from that.

I don't talk about him often......

I usually spend most of my time talking about Nate and Noah, since they have more severe autism.  This time, I am only going to talk about Nick.

Nick is a high school freshman with high-functing autism.  He was diagnosed at 18 months and responded to therapy much quicker than Nate.  By 4th or 5th grade, he no longer required an aide and was navigating through with the help of his very understanding teachers.

The transition to high school has been better than I expected.  He still struggles with the social expectations of how students behave in class.  He needs to learn to watch how the other students are acting for cues; no one else gets up and walks around the room while the teacher is talking. He also needs to learn that every thought that pops into his head does not need to be shared.  The teachers know that he is smart, he doesn't have to show them every chance he gets.

We had his IEP yesterday.  Nick's Behavior Analyst came along.  She was able to share with his teachers the social program we are using at home so they can be consistent at school.  It was also nice to have someone (not a parent) explain to everyone how hard he works at home to achieve what they see at school.  He is not being that annoying kid on purpose.  She also explained how Nick is in the really difficult "sliver" of the spectrum because he knows that he is different but doesn't know how to fit in.  As we were walking out to our cars yesterday, she commented that his teachers seem to "get him".  I truly hope so.

Nick is playing football this fall.  Due to lack of staffing, I wasn't able to see many of his football games in the past.  This year, most of his games have been on nights when Nate and Noah are staffed.      Tim and I are getting parenting experiences we didn't think we would get.  A couple of weeks ago, we  were sitting in a restaurant with Nick after one of his games.  He was still in his uniform, smelled disgusting, and was doing homework while we waited for our food....and I loved every minute of it.

Friendships are still a struggle....I often get frustrated with his behavior, but I need to remember that he honestly doesn't get it.  Staff role plays and practices scenarios with him and I hope this will improve with time and maturity.  Until then, we just keep plugging along.......

Don't make fun of the little yellow bus......

Last night someone I went to high school with made two comments on Facebook making fun of the "little yellow bus."  Since I was friends with this person, the comments showed up in my feed.  I read them and read them again.  I was offended and shocked that someone would still make reference to the "little yellow bus" when he was questioned about his spelling.  He also preceded to refer to the person who questioned his spelling as also having ridden "the little yellow bus."

I stewed for a while and then I did it.  I called him out on it.  Since I have since blocked him, I can't pull up my comment.  However, it did let him know that I found it was offensive.  While he did not reply to my comment, the other person did.  His reply was, "Oh, for fuck's sake."

Well, let me tell you what "for fuck's sake."  That "little yellow bus" was a life saver for us.  Every morning as each of my three children boarded that bus, I knew that they were going to make some sort of progress that day.  Some days it was very small, but other days it was HUGE.  I knew that I was lucky to live in an area that offered all these services for my kids.  I have met many parents with special kids who are not that lucky.  I knew that my kids would be safe and no one would be making fun of them for being different.

So, let's show the "little yellow bus" some respect.  Let's show the people who work with the kids who ride the "little yellow bus" some respect.  It's not always an easy job.  But, most importantly, let's show the kids who ride the "little yellow bus" some respect.  I guarantee they work harder than most kids to learn how to do things that many people take for granted.

We've Come a Long Way Baby....

Today, I took Nate to the pediatrician for a pre-surgery physical.  He's going to Children's Hospital to have dental work done under anesthesia tomorrow and needs a physical 24 hours in advance.

As Nate and I were driving to the doctor's office, we had this conversation:

Me: Nate, what's the doctor going to look at?

Nate:  Ears.

Me: What else?

Nate: Mouth.

Me:  What else?

Nate:  Chest.

Me: What else?

Nate: Back.

Me: And?

Nate: Belly.

Me:  Are you going to kick the doctor?

Nate: No.

Me:  Are you going to scream?

Nate: No.

We had the conversation 3 or 4 times as we made our way to the appointment.  And you know what?  It came true!

He let the nurse take his temperature and blood pressure.  He actually led the exam with the doctor by telling him what to check and in what order.  He was so good!  He did get a little impatient after the exam while we waited for all the forms to be filled out.

As Nate was getting his cookies, (Which he asked for using a complete sentence), the nurses were talking about what a good job he did.  One of the nurses said that she remembered him screaming and rocking when we pulled in the parking lot.  She laughed and said that everyone knew Nate was in because they could hear him screaming the minute we walked in the door.  He's come a long way....... Let's hope tomorrow goes as smoothly.....

8 days post surgery.....

I am 8 days post surgery.  I spent last Thursday night in the hospital.  When I was released last Friday, I went straight to my mom's.  It's quiet there so I was able to sleep and heal.  I am so used to all the staff being in the house, that I don't realize how loud and busy it always is.

Tim brought the boys to visit me twice at my mom's.  Noah really struggled.  He didn't understand why he couldn't sit next to me and twirl my hair.  He also went through my bag, brought me another pair of pajamas (he didn't notice that I already had a pair on), and then stripped and tried to find his pajamas.  He also didn't understand why I wasn't coming home with him.  I think it was a rough 5 days.  Luckily, the approval for extra staffing came through and he was staffed all weekend and kept busy.

I returned home Tuesday.  I arrived an hour before Nate and Noah got off the bus, so I had time to settle in and get comfortable.  When Noah came in off the bus, I was laying on the love seat.  I thought he'd come straight over for some love......no.  He ran right past me and into his room to put his things away.  He basically ignored me all night.  I'm not sure if he was mad at me....  

I got the silent treatment until 7:30.  Why 7:30?  Well at 7:30, Noah had been bathed, was in his pajamas, and had taken his medicine.  He was tired.  Now it was all about mom.  He brought me another pair of pajamas and asked for "Mommy's bed".  What did I do?  I promptly complied.  I put on the other pair of pajamas and climbed into my bed with him.  (Don't tell me he's too old to be in my bed.  You try having 2 children who will never snuggle and then suddenly the 3rd one wants to snuggle.  I have many years to make up for.  That's probably the topic for another blog)

We laid down under the covers.  Noah had a flapper in one hand and was twirling my hair with the other.  All was right with his world.

I'm having surgery....

So here's another time that the autism just makes things a little more difficult.  I am having surgery tomorrow with a 6 week recovery period. For a few weeks I will not be able to push a vacuum, lift anything over 10 pounds, or go up and down the stairs. So, being left alone with Nate and Noah is now impossible.   My biggest stress is not the surgery itself, but getting Noah staffed during my recovery.

Luckily, the state approved emergency funding for additional hours for Noah.  Unfortunately, the company who provides our staff doesn't have enough people to staff all the hours we need help.  I am hoping they find the personnel we need.  As it is, I already am staying a few days with my mom so Noah doesn't jump on me or hurt me in any way. 

If Nate and Noah were typical children, I'd be able to be left alone with them after the surgery. They would also be able to help with cooking meals and keeping up the housework. I wouldn't be spending so much time and energy worrying about getting Noah staffed. 

Sharing our story.......

A friend of mine teaches a class at Lindenwood University and asked me to speak to her class. I told them about our journey.....the good and bad.

I told them about the poop, the appendicitis, and the social struggles. I was brutally honest. I also talked about the Autismmobile and getting services in the home. I talked about the depression and how  Noah's diagnosis almost killed me. We laughed together and got a little teary together. 

I love sharing our story in hopes that I can save another mom from feeling as overwhelmed and alone as I was. It's also good for me to tell the story from the beginning and realize how far we all have come.