How Autism Changed Me.

How autism changed me.

Before my son was diagnosed with autism, I was a different person.  Looking back I can see how naive I was about so many things.  I was superficial, vain, self centered and insecure.  I was so afraid to stand up to anyone, and I took myself way too seriously.

I didn’t say much for fear that I would say the wrong thing at the wrong time to the wrong person. And I was afraid of people laughing at me.

After my son was diagnosed my life began to transform.  I guess it was my patience first.   I remember people saying things to me like “I can’t wait for you to meet my cousin’s little girl…she has special needs and I know you will just love her!”

When I began to see that Buddy’s father wasn’t stepping up to the plate, I knew that it was all on me…I had to make the hard decisions on my own.  The first one, was to get divorced.  When I told Buddy’s dad that I wanted to move several hours away and take Buddy with me, his response was “When are you leaving?”  That sealed the deal for me.  Now, B’s dad loves him, I have no doubt about that…but Buddy wasn’t the son that he had dreamed of.  Quite frankly, I think his dad was (and still is) embarrassed by him.

This brings it back to me…I didn’t want Buddy to ever feel that I am embarrassed or ashamed by his autism.  So once we moved, I became B’s one and only, and I had to take charge.

With the divorce, I had total control over Buddy.  If his dad called, I had to answer the phone and hold it to B’s ear, and try to get him to giggle or make some sound so that his father could hear him.   If his dad wanted to visit, I had to make the arrangements. (once even letting his dad stay at our house).

When his dad refused to pay child support, or help with school clothes and Christmas, I had to make sure that my frustration didn’t show in front of Buddy.  I could have easily not answered the phone.  Or told his dad that he was napping or not home.  But I didn’t.  It wasn’t about me,  I had to do what was best for B.  And what was best, was making sure that he had a relationship with his father.  Even to the point, of sending cards on the appropriate holidays on B’s behalf.  Most of the time even putting a gift card in there.

So that part of me changed.  And most recently, I have noticed that I am willing to post unflattering photos of myself, as long as Buddy is “loving on me” or he looks great in the photo (it’s very hard to get a good photo of the boy).  There is one that I posted just last week, my face looks like a beach ball with squinty eyes and wind blown hair, but B is looking at me with such love, that my heart fills every time I see it.

Another part that has changed, is that I will sing.   Now, I know that I cannot sing my way through Happy Birthday.  So even at parties, I won’t sing.  In church I would never sing louder than the voice in my head.  Yet, last summer, we had family visiting, and I found myself singing to Buddy in front of them, just so they could see his reactions to his favorite songs.

So, I guess one of the good things about autism, is that I have become a better person because of it.


Opening the Autism Box

For eighteen years, I believed all of the experts…the doctors, teachers and therapists.  I never once doubted them.  I was told that Buddy was in his own little world, that he didn’t understand, that he never would.  And that I shouldn’t waste my time on manners or explanations. That all of this was a waste of time and effort.

So I talked AT Buddy, not to him.   The mom in me never gave up on the manners part though, I am a stickler for manners.

Then our lives changed. Three major pieces of the puzzle fit into place that year…  I saw a movie on HBO about Temple Grandin.  I had read a few of her books, so I knew her background, but seeing the movie and watching with her commentary was the first eye opener. I also met my cousin and his wife, they have a son a year older than Buddy, that also has autism.  My cousin gave me the best advice…”play dumb”. Then I saw Carly Fleischmann on 20/20…that was it icing on the cake.

These 3 factors changed life as we knew it.  I started playing dumb.  I started saying “Buddy, I don’t know what you want, you need to show me” and “Can you help me, please?” I also started paying closer attention to what he was looking at.  And I would imagine what I would be thinking if I was looking at the same thing.  Then I would talk about it and imagine Buddy’s curiosity.  Saying things like “Did you see that plane, Buddy?  It had cool red wings, did you see the red wings?”

I started thinking about what I thought were coincidences. Like the time he was about 4, he had a little train Christmas tree ornament. It made this cute little “choo choo” sound.  Well, it WAS cute the first few dozen times.  I got tired of hearing the annoying little train, so when Buddy wasn’t looking, I stuck it on top of the fridge.  A day or two later, Buddy had found it and I had to give it back.  The next time it annoyed me, I stuck it in a cabinet.  Buddy discovered it there too.  So the next time it drove me crazy, I thought “That’s it!”  I waited until Buddy was in the living room and I took the train into my bedroom, closed the door, lifted the mattress corner, and tucked it a few inches between the mattress and box spring.  I felt like a champion…I won the battle of the choo choo!  Or so I thought.  About a week later…guess who had the train?!  I never thought about it, just thought he found it somehow.   Fast forward back to the present…I realized that I TOLD everyone where it was.  I spoke about it freely, assuming that Buddy either wouldn’t listen or understand.  Never thinking that he not only heard me, but understood EXACTLY what I was saying.

I am so grateful, for these 3 life changers.  Autism is a box, and I was keeping Buddy inside.  I am so glad that we opened the box and let my sweet boy out.  It may just be my perception, but Buddy has grown more in these last 5 years than in the 18 prior.


Things that I have learned, being a autism mom.

I have learned a lot in my nearly 24 years, at being an autism mom.

I have learned that my son can find the correct button to work the DVD player in his room, to find the exact part of the video that he wants to watch.  Even if it is a totally different player than he had the day before.

I have learned that I cannot sneak a bowl of ice cream, to eat by myself…the unwritten rule is: all desserts on Mom’s plate must be shared equally with the boy, or you will be required to refill the empty plate until the boy has satisfactorily gotten his share.

Cookies of all kinds must be accompanied by a cup of milk…in the dedicated “milk cup”.

If Magic Shell is found in the pantry, (that mom has forgotten was there) ice cream will have to be also found, or added to the grocery list.

Pasta must have grated cheese and bread to be eaten.

If items are hidden, no one is allowed to mention the location of said item, if the boy is within 50 yards of the conversation.

I have learned the power of counting to 3.  I rarely get past the number 2, before I see him responding.

Singing silly songs will make the boy smile, allowing for a tooth brush to enter his mouth for as long as the song lasts. And singing the Barney song, will get a kiss and a hug every time!

Pretending that you are clueless gets him to figure out how to communicate his wants and needs.

I have learned that the boy understands most everything we say to him, however, like most kids…he ignores me.

I have learned that he thinks he is outsmarting me, especially when he does something he isn’t supposed to, while covering himself with a blanket…”The cloak of invisibility has no power here, Son”.

I have learned that the boy understands, and if you want something, you have to ask nicely, by kissing your mother on the cheek to say “please”.

And most of all, I have learned that you don’t have to have words to make someone feel loved.  One hug from the boy, says “I love you, Momma” louder than 100 PA systems at a rock concert.