Glass Versus Rubber Balls

A Day in the life of Brayden-  glass verses rubber balls

I want to tell you what I find is the most difficult part of Autism, finding the balance.

How to you balance your work, kids, home, and life when you are pulled in so many different directions?  I listened to a message that talked about juggling the balls of life in the air.  Some of the balls were glass and others were rubber.  Rubber balls can bounce and you can catch them later.  The glass ones fall and can never be repaired.

As I was riding in the car tonight with Ava.  She had gone to a friend’s house and went to the Church’s harvest party.  I was so thankful for our friends at the church to think of Ava and include her.  I asked her how her time was.  Her response was, “oh, you noticed me, probably because I was the only one in the car who can talk.”  My heart broke.  Although her response was snotty it was true.  She was lashing out at the fact she wasn’t getting the attention that she needed from me.  The expectations that are placed on Ava are much higher than the typical 9 year old.  I have a lot of guilt.  I should be taking her to lunch, hearing about her day, snuggling up at night and reading a chapter book together.  Instead I am asking if she can put the boys in the bath while I clean up the pot of soup that Brayden just spilled on the floor. I am asking her if she did her homework, showered, and to clean up her room.  When she ignores me I get frustrated, raise my voice a little and Brayden cries. What a crab.  I often hate myself for this. I should be looking through her homework, volunteering for the field trips, and combing the tangles out of her hair.  Instead I have a mental list of all the things that I need to accomplish before I can go to bed and just want to get through it.

Do you ever have those days that you feel defeated even before you get out of bed? I feel that I am constantly trying to find a routine, be organized, and meet all the needs of my family.  Lately I have felt like an epic fail.  This weekend was especially tough.  I woke up to no hot water, my washer is broken, and Brayden didn’t sleep from 1 to 4.  I had to take one of my daughters to a volleyball tournament, accidentally I drove to the wrong school,  One of my daughters was sick and needed to go to urgent care, and Ava was in the school play.  Even gumby’s arms can’t stretch this far. 

How do you not neglect your other children when you have a child that demands so much of your time? Even parent teacher conferences aren’t the same.  I really never understood what an IEP meeting/progress review was and I never got why people would say that IEP meetings would be frustrating, difficult, or they would walk always crying. Now I do.  I think on the surface sending your child to school seems very cut and dry.  The law states that children belong in school when they turn 6.  I am a 100 percent supporter of school and teachers.  Brayden has a wonderful classroom teacher.  The special education teacher researching, implementing, and troubleshoots  how to adapt the lessons to help Brayden learn.  Speech introduced us to the talker and works with him on growth.  I am so grateful for them.  When I push back about extending his school day it isn’t because I don’t think that they are trying to help him.  It is because I am scared.  To most it may sound silly.  What am I scared of?  I am scared of him not having any friends.  I am scared of him being made fun of.  I am scared of him being overwhelmed, not being able to communicate and becoming frustrated.  But mostly I am scared of losing his in home therapy staff, (WEAP).  The thought makes me laugh.  I have come so far.  When they first started coming to my house it was so hard for me.  At first I viewed them as company and exhausted myself trying to keep the house neat.  If I had a day off I always had to be home and struggle with the loss of autonomy.  I felt awkward scrubbing the toilets, mopping floors, or sorting dirty underwear in front of them.  They were caring for my child.  Isn’t that what I was supposed to do?  Now I view them as family.  They love my son as much as I do.  The growth he has experienced is because of them.  He is always on their mind.  They try bringing in new toys, foods, music, and activities to engage him.  They think about him in their off time and text me different ideas or suggestions.  When he is with them I know that they can communicate with him, are teaching him, and keeping him safe.  At age 6 WEAP is supposed to be done with Brayden.  They need 40 hours a week to keep him as a client.  If can’t provide that they are forced to move on to a family that can.  The need is so great.  You may say so…..  He is school age send him to school.  What is the big deal?   Yes, that I can do.  However my immediate concern is during the breaks from school and more importantly summer break.  Summer school is not a class that they hold for kids with special education, IEPS, and they do not have aids.  What am I supposed to do  with him then? Brayden needs structure and routine.  I am scared.  Scared for regression.  Scared for his safety.  Who can watch him?  Who can teach him? Do I get a different job? I had a co-worker approach me with a job where I could work from home.  I am kinda a talker, and I really like people.  At first I had thought no.  Now the more I think about it.  Brayden will always need someone to get him on and off the bus.  He will never be able to be home alone.  Maybe I was suppose to take that job?  Of all the things the loss of friendships is the hardest for me. I have pushed many friends away because I just don’t make the time for them. Many just don’t understand why I can’t just get a babysitter, and some just don’t want to hear about Autism. It isn’t that they don’t care it is a world that even I don’t understand.  Children with autism their behavior is completely different than a “typical” children.

As I look around my house it is a disaster.  I know a lot of people say that their children are messy.  I  am not sure you have met messy until you have met Brayden.  We call it destruction mode.  I have yet to figure out if he is overwhelmed, bored, excited, or looking for something.  He loves to throw things out of drawers, sift, and crumble food on the floor, dump laundry baskets, silverware, and dog food.  Many would say put your stuff away and you won’t have this problem.  I don’t know how to do this.  I just can’t get ahead of him.   I can’t figure out latches he can’t break, food that he will eat instead of shred, and cups that when you throw don’t spill.  You can tell me to “tell him no, and pick up.”  Oh, I have tried that.  It is almost like Brayden doesn’t remember that it is wrong until he hears my voice or sees my reaction.  I often feel it is like Ground Hogs day at my house everyday.  No matter how I try to change the scenario the results are always the same.

I feel as though Autism has become the focus of my life.  All of my spare time is spent reading researching and trying to find some answers.  Autism is something I think about every minute of every day.  At night I will wake up in a nightmare that I have lost him.  I reach out and feel him next to me.   I read, pray, and reach out to strangers for ideas on how to help him.  Should he see a different doctor, different supplements, different therapy?  What should I do.   Why can’t he sleep?  There is so much that I don’t understand. In the beginning I knew we were going to “fix him”. 

Looking back I went through a period of denial.  I didn’t want to tell anyone that he had autism.  I thought, “I don’t want him to be labeled forever, especially when we beat this.”  I love to take pictures and scrapbook.  I didn’t take many pictures for years.  It was as though I did not want to remember this time in our lives.  Each photo was so difficult to take.  Brayden was never looking at the camera.  All the family events that I thought would be amazing ended in sweat and tears.  Who wants a photo of that? As time has gone by I have accepted our new normal.  Yes there are days that I cry.  Days that I feel so helpless.  What you need to understand is I don’t want to change Brayden.  I want him to be the happy, loving, bouncing little boy he has always been.  What I do want to change for him is helping his anxiety.  I want him to be able to sleep.  I want for him to safe and happy.  I want him to be the best little boy that he can be.  But what about my other children.  How do I make them feel special and important?

For those of you that know me I am always trying to find the meaning of why things happen.  I am always trying to see how it all works for good.  I know there is a purpose.  I have joked and said, “God, if you are trying to teach me something or get me somewhere I need a little more help because I am not getting it.”  I know that these struggles can not be in vain. 

So as I am going throughout my day I am thinking of problems, tasks, and interactions as balls.  Is this a glass or a rubber ball.  If it is glass I am going to protect it, love it,  and keep it safe, because those are the memories and things that matter.  If the ball is rubber I am going to let it bounce, pick it up when I can, and try not to beat myself up about it.