The Unhappy Mother’s Day

May 1992 was my first mother’s day, Randy was born on the 19th, but that one was my first.

My name is Aileen and the day Randy was born was the best day of my life.  I had prayed for years for someone to love me unconditionally, and that day was the day it happened.

Randy had some delays and at 3yrs old, he was diagnosed with autism.  However, that didn’t change him in my eyes.  He was perfect. Aside from colic, he was the happiest, most loving person I have ever known.

He was non-verbal so I never heard, “I love you” or “Momma”.  But, his hugs were serious, he held me so tightly that I literally could not pull away…and I didn’t want to.  He would squeal when he was happy, and giggle and vocalize all the time.  (We called it singing)

He loved watches, trains, planes, music, game shows and cartoons.  His room looks like that of a young boy, with lots of cars, trucks and stuffed animals.

He loved sitcoms too, and we could not eat a meal without the TV being on with his favorite show playing…for the last several months it was According to Jim.

In his room, his TV was always on if he was home.  And for years it was hooked up to a DVD player but last fall we started playing Netflix for him…and lately Scooby Doo was the show that was playing, if it wasn’t Scooby Doo, then it was a music station…and his favorite was a 50’s station.

Through the years we were blessed to have some amazing people working with Randy.  Kizzy, has been a constant in his life for nearly 12 years.  So much so that we called her his “other” mother.

When Randy was 22 he was “aged out” of school and Kizzy worked with him during the day.  It was at this time that I decided that he needed more than just a routine.  He needed something to look forward to, and I was sure there were others like him.   So a friend and I started monthly special needs dances.  This evolved into Able Buddies NC (Buddy is a nickname of Randy’s) a non-profit organization that still hosts monthly dances and will someday provide employment for our special needs community.  My favorite part of the dance was when we would slow dance to the song “Speak Life” at every dance. And I would whisper “I love you, you’re my favorite”.

 

On April 14th Randy was at Kizzy’s house for the evening, and she called me.  She said Randy had a seizure and she called EMS.   My husband and I arrived behind the ambulance.  He was dazed and confused but he seemed okay.  I told him that we were going in the ambulance and that it was going to be okay.   As I helped him outside he wrapped his arms around my neck and had another seizure.   He came out of it and we were able to get him (fighting) onto the stretcher and into the ambulance.

Once we got to the hospital, he had 4 more seizures, all with me holding him and telling him that “Mommy’s here, I love you, Baby”. That last seizure he pulled me to him.   The last one, he stopped breathing.  I stepped out of the room so that the doctor and nurses could work.

The next time that I saw him, he was gone.  I sat on the floor running my fingers through his hair and kissing him, singing and telling him that I love him and that he is my favorite.

The nurse came in and asked if I was interested in organ donation. And I knew that we had to donate what we could, so that his life would be meaningful.

I know that I could be angry, and yes for a few days my faith was almost gone.  But God showed me several blessings that I am grateful for.

Someone had prayed for a miracle…Randy was that miracle.

Randy could have died alone…I was the last face he saw, and the last voice he heard saying that I love him.

He could have been ill…he wasn’t

He could have died a horrible painful death…it was fast…4 hours.

He was with Kizzy, had he been home, he would have been in his room and I would probably not have known about the first seizure.

I was blessed with a happy, unconditional loving, handsome, son for nearly 28 years.

And my sweet baby boy, died a hero.

His funeral was the 2nd worst day of my life.  Randy was my world and I am so lost without him.   I feel like I have traded the “autism mom” club for the “bereaved mother” club.

 

I leave his TV on if I am home, and I sleep in his bed cuddled up to one of his favorite stuffed Cliffords.  I can’t go to sleep without telling him “Good night Buddy, I love you” . I still have a folded pair of his jeans sitting on my couch that I cannot put away and we still turn on According to Jim when eating .

Tomorrow is Mother’s Day and I am dreading it.  I am not a mother anymore.

So hug your babies, no matter how old they are, be sure that they know that you love them.

Thank you for listening.

Sincerely,

Randy’s Mom

 

When Kids Notice That Your Child is Different.

The moment when kids start to notice your child is different.

Today, we were at a McDonald’s. My 4 year old was playing on the play place. Out of no where, I start hearing kids say,” He took his pants off, he has a diaper on.” Laughing about it. Yes my child is not potty trained yet.

I stood straight up and went up there, put his clothes on him and as I’m doing this. a child is pointing and laughing at him about the incident (Telling their sibling I assumed).

Of course, their parents are not seeing this incident, because of not being on the play equipment. I said as calmly as possible. “Please stop talking about it, because it isn’t nice.”

Now, I  wish I could have handled this differently. Used it as a education moment. But I was  filled with hurt for my child.

For parents that read this article, I say to you, educate your children that are and are not special needs.

A child with special needs, should know they are different and special in their own way . That some people may not accept that, and other children should know they are just as special in their own ways. That there are different people out there, that we should treat with kindness.

~AMB <3

Why I Carry My Son

As a parent of a child with special needs. I was expecting the stares, the avoidances and the reassuring.
Today, I was told “I would not be carrying him”. “He can walk.” “Oh my back.” They exclaimed.
Sure, the person meant well, but is it something that should be said? Sure, I explained my son has special needs (I kind of have to). But I could tell the person was still kind of eh.
I carry my son at the age of 4 to keep him safe. Sure, it hurts my back eventually. But my number one priority is to keep him safe. If I put him down he will run away faster then I can catch him.
If I try to make him hold my hand he will force himself away or drop to his legs to get away.
My son is a runner. So I carry him to keep him safe. Sure, at times he rides in a cart or stroller. But in this situation it was easier to just carry him.
~ AMB