The Balancing Act.

My son is growing up.  One week ago, when his grandpa called to tell me grandma had collapsed, he was a brave little boy.  He was quiet and understanding.  We arrived at his grandparents’ house.  After examining all the people around her in the bedroom, he sat down on the living room couch where I put him and played with a toy.  For probably 30 minutes.  By himself (with me peeking in on him).

I did not have a lot of time to process how good he actually was but it was duly noted.  I was very proud of him on the inside but did not have the chance to do more than mention it briefly.  When I left my son to go to the emergency room, he was calmly playing on the floor.  He seemed to understand.

I don’t even remember coming home that night.  It was only a week ago but I do not recall it all.  I know my mom was about to go to a room on “the floor” from emergency.  I know that she was stable enough to be transported.

Saturday, we took my dad’s car from his home to him at the hospital since he rode their in the ambulance. Knowing how my son adheres to a fairly rigid Saturday routine, I told him in advance we’d be going to his grandparents’ house and the hospital.  He was calm.  He did not show any sign that he was distressed.

We went to my parents’ house to gather things my father requested.  My son likes his grandparents’ house and was quite comfortable inside.  Afterward, just he and I drove to the hospital while my husband drove my dad’s car.

Inside the car, I again reminded him we were going to the hospital to see his grandma preparing him for a place that had always been very scary for him.  Then, I asked him where we were going.  “To the hospital,” he answered.  He was familiar with the hospital, albeit a different one, from his own visit there only two weeks before all this happened when he was diagnosed with a painful bladder infection.  I told him we’d be going into an elevator to the 2nd floor.  “One up and to see grandma,” were the words I used.

When we arrived, we had a bit of a walk to the entrance from the parking lot.  My son was now showing signs of nervousness.  He was nervous to walk through the parking lot.   He had been expressing, in weeks past, a new fear of cars and trucks with their engines on in parking lots.”  He would fuss, want me to carry him and go into a bit of a freak out.

On this occasion, he was calmer outside.  He was still scared.  But he said, “Over there!” and pointed the direction opposite of the few cars in the parking lot he heard with engines on.  He was scanning the parking lot.

We met my husband at the entrance.  Directly inside the doors is an indoor pond with a small fountain.  My son stuck his hand in the water, almost soaking his sleeves before I got to him.  We dropped a coin in and made a wish.   At least, I made a wish. I don’t think he knows what a wish is.

As we headed down the hall, my son was chattering and talking non-stop.  He looked curious and nervous.  When we got to the elevator, he pushed both the up and down buttons before we got to him.  Luckily, no one else was around and the arriving elevator was headed up.

We got in and he wanted to push all the buttons but pushed only the “2” (and the “1” again which re-opened the closing door) with prompts followed by physical separation from the button panel.  When we got out, he did manage to push the button to go back down, but that was the only direction it could go anyway.

When we arrived at his grandma’s room, for a four year old ASD child, my son was amazingly well behaved.  He greeted his grandparents, gave them both hugs and told them he loved them (via prompts from mom). Despite being gravely ill, my mom knew who he was and responded to his hug.  My dad teared up at this.

Then, of course, my little boy was done.  He lost all patience.  He began to explore the many digital displays in grandma’s room from her IV monitors, to the keyboard used to chart her information, to the controls for the air bed on which she laid.  He managed to get his fingers on the “off” button to the air bed but my dad just turned it back on.

Having completed his exploration of her room, he wanted to head off to the next room.  My husband had to stop him.  We left.  I do not even recall how we left or when and how how I returned, if at all, for the rest of that day.  I do remember that, as we left, I asked if he wanted to be a doctor when he grew up and he said “yes.”

On Sunday, my son and I visited his grandparents’ house and the hospital on our own.  He did about the same on Sunday morning.  I left the hospital with him and drove home only to have to return late that afternoon because my mom was being placed into the Intensive Care Unit of the hospital.  My son stayed home with his dad.

When I returned on Sunday night around 10:30 p.m., my little boy was still awake.  My husband had found the most obscure, smallest PJs on him.  I had actually thought I threw them out because they were too small.  But my little guy was fine.

I brought my dad with me because he could not stay the night in the ICU.  My son was very excited to see his grandpa for about five minutes.  After that, he went downstairs, expressed no curiosity about my dad’s presence and went to bed.

On Monday, I was still unbelieving that my son was being so patient and good.  He was taken to school, gym class, and to therapy by his father with no protests.  When I returned home there was a minor incident in which he told me, “Mommy, go away!”  which, I know means that he was upset that I was away from him.  I asked him if he wanted me to go away and he said, “No, stay!  Stay!”  If I don’t ask him this question, he will go on an endless loop of “Mommy go away!”  Given my level of exhaustion and stress, I had no tolerance for that and took the easy way out.

Tuesday night, the dam broke.  When he returned from speech and OT at the school with his dad, I had come home from the hospital a few minutes before he got there.  He came in, started repeating phrases he used to utter when he was 2.5, and broke down crying.  I held him and tried to comfort him.  I took him for a bath.  He was fragile and broke down crying again in the tub.

After the bath, I held him again.  I got him into his PJs and combed his wet hair.  He was sobbing.  I spent the rest of the evening reading to him and trying to comfort him.  It was clear, the time of being understanding had run out.  He was missing his mom and was upset.

He understands that grandma is in the hospital and she is sick.  He does not understand how sick nor do I think he needs to hear it.  He only knows that his mommy and his routine are gone and this is frightening to him.

I love my son and my mom and dad with all my heart.  Neither understands the idiosyncrasies of the other. And both need me.

So, for Wednesday, I told the therapists there would be no school circle time, despite protests from my husband.  I bundled up my son and took him to the hospital with me to see his grandparents first thing in the morning.  He wanted to go.

We got his grandpa breakfast from the cafeteria so he could eat in grandma’s room.  I got a lot of stares and looks while my son walked around the cafeteria no more than five feet from me exploring this new environment asking me to say the kitty sound.  Most of the looks were from hospital workers.   For the first time ever, I can honestly say that I was completely unfazed by their stares, and actually was quite pleased with my son’s behavior.

My little boy picked out a nice chocolate donut for his grandpa to eat although he wanted to eat the donut himself on the way to the room.  He rode the elevator like any NT child would do (well, almost – with me as the physical barrier to the buttons after he pushed the appropriate one).  I did have to keep his hands off the instruments in grandma’s room again.

I could see in my dad’s face that he did not understand why I did not control my son’s behavior but he did not say anything.  He does not know his grandson is autistic.  He does not need to know now.  I’ll take the disapproval.

And, again, as I write this Wednesday evening,  my son has broken down in tears over a toy truck that has lights that will not work consistently.  The truck is very old and he has played with it for years knowing the lights flicker and sometimes do not work. This time, we got a minor meltdown for it.

I asked my husband to take some other offensive toys away.  As he did so, my son screamed in my ear as I held him back from trying to physically stop his dad from touching the toys.  Next, his tiny little hands grabbed for my computer to punish me for taking the toys out and I had to block his grabs for my computer as it was done.  He cried for a few minutes and it was over.  He played quietly with his iPad and his other toys. My last stressed out nerves were fried.  And so, I held my head in my hands, sighed wiped away a couple tears and went back to writing.

It’s a strange effort to balance the needs of my child against those of my parents.  I do know that all the stress is borne from a foundation of great love for all of them.  And that will have to give me the strength to do whatever needs to be done.  Just like a daughter/mom, caught in the middle, should do.

[The good news is that the fever is gone.  The white cell count has gone almost to normal and she was more verbal Wednesday, repeatedly asking what time it is.  She is also verbal enough to express that she is in pain.  Her nurses have been giving her pain meds. She passed a swallow evaluation and can take thickened liquids and purees. Thank you for your continued support and prayers. Each of you is a port in this turbulent storm.]

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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10 Responses to The Balancing Act.

  1. So tough for the little guy. But you are both handling it so well. Maybe a social story would help him to understand that mommy will be coming back.

  2. bbsmum says:

    A balancing act indeed. But you forgot the other person whose needs must be met. You. In the midst of this crisis, your needs are inevitably coming last. But there will come a time when, just like your little boy, ‘the dam will break’. When it does, I hope you will be as kind to yourself as you are to everyone else. ((hug))

  3. Julie says:

    Oh your poor sweet boy! I just wanted to crawl through my monitor and hold you both.

  4. Kelly says:

    Oh, Karen. What a tough, tough week for you and your family. I cannot imagine the waves of emotion you are experiencing over and over again. Your patience is nothing less than inspiring. While breaking down is a luxury you are unable to afford at this point, just keep in mind that you are only human and your shoulders can only hold so much.

    Your strength is amazing!

  5. Grace says:

    You’re doing an amazing job. And so is your little man. ((hugs))

  6. Lynn says:

    I’ve been keeping up with the Tweets…sounds like a roller coaster indeed. Times like these are so so hard. There’s no dress rehearsal for stuff like this relative to your son…there is just nothing that can mimic these circumstances. I’m sure it’s frightening for him. I hope it’s getting better for everyone.

  7. Cara says:

    He is an incredible little boy, I’m glad he’s being so wonderful for his Mommy! Hang in there, my prayers and thoughts are with you and your family! And know you have a support system – his therapists will give him lots of attention 🙂 Things will get better and I’ll keep praying! You have a very special little boy! See you tomorrow!

  8. eof737 says:

    You are doing the best you can… Prayers and blessings all around.
    Eliz

  9. I am also proud for your little guy. He has shown amazing restraint for a guy his age — ASD or otherwise. That in itself should show you what a good parent you are!

    I had to chuckle about the PJs, despite all the emotion in your post. Doesn’t it always figure that the husbands find the LEAST wearable clothes and put them on the kids when left to their own? They try, I know… but well…

    Hang in there, Karen. We are thinking of you!

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