Monthly Archives: April 2014

I never understood

I never understood what the big deal was about milestones. Everyone has them, right? They are called milestones for a reason. Certain things are supposed to happen at a certain time. Abby? She was usually a week or month early on every milestone. Except talking. There she was slightly delayed. However when she began to talk, she talked in paragraphs. Even in her sleep. Sadly, I don’t remember any of them but when she walked, a week before her first birthday.

Boo’s milestones are completely different. I remember every one because they are different. I remember her first hospitalization. I remember the first time I had to make my own baby food because she was allergic to everything else. I remember her first steps on a walker.

I remember her first word, Abby. I remember every therapy appointment that gave Boo the tools she needed and the patience of her therapists. Then there are the crazier milestones. Take last couple of weeks. Boo had a lot of milestones this past month. 

For the first time I walked into a store with her. Usually she is carried or in a carriage. But I just had to run in for a gallon of milk. What could go wrong I wondered. Um….forgot about all the items at her height she could now knock off the shelves. For the first time we held hands, walked into a store and destroyed it. Plus we got the milk.

Boo went to the bathroom by herself.Well, she went into the bathroom and pulled down her pants. By the time I realized she was in there the poop was on the floor. However she went into the bathroom and pulled down her pants. And I cleaned the bathroom floor.

Boo fell in love with Frozen. She knows Elsa and can say her name. The entire house can recite verbatim every word in the movie.

Boo stole one of Abby’s stuffed rabbits. Renamed it Clover even though it bears no resemblance to the bunny in Sofia the First. Abby was okay with the renaming, not so much the stealing. Even though Abby hadn’t even remembered she had the rabbit. Score one for sibling rivalry milestone.

She said I ove you. Without prompting. I get to say it back.

I never understood what the big deal about milestones were, until Boo worked so hard to attain them.

Finish the Sentence Friday

This is one face…

Today is Autism Awareness Day. While I may not (yet) be comfortable with Boo having an added diagnosis of Autism, I am getting there. There is no escaping the fact that Boo was tested and she has been diagnosed with Autism Spectrum Disorder. But what does this a child with autism look like?
It depends on the child. When Boo was first diagnosed my friend Julie told me that Autism Speaks has a motto: Meet one child with autism and you have met one child with autism. The children are as unique as a snowflake. Each wondrous and magical and heartbreaking beautiful.  

A child with autism is born just as perfect as a child born without.

A child with autism will light up your world with their laugh just as child born without.

A child with autism will love and be loved by their parents, siblings and friends just like a child without.

A child with autism may love the beach, just like a child without. However it might take them longer to enjoy the experience. They may also wear sneakers at the beach but that’s okay.

A child with autism will learn to walk, run, jump and talk. Just like a child without.

This is what a child with autism looks like.

Photo Credit: Jen Strano

Can you tell? Can you see the autism? Probably not. I hope not. I hope when you see Boo or any child you see them and not one of their diagnoses. A child with autism works harder than the child without. A child with autism spends most of their days in therapeutic environments working to attain behaviors that will allow them to be included. A child with autism is loved by their parents and their peers. By their community.

“You are so out there” is a comment I hear a lot about Boo. But how can I hide her? If I am not out there how can you know a child with a special need and realize they are just like your own child.

Beautiful. Funny. Smart. Frustrating. Heartbreaking. Mysterious. Loving. 

That’s why I blog. Why I refuse not to just stay home and hide. To hope just one person sees my child as Boo first and whatever label they put on her second. Well, eighty-third. Because let me tell you this, there is a lot of things about Boo I want people to see way before they see autism or undiagnosed genetic syndrome or intellectual disability.

This is just one face of autism. 

Please join me in sharing your child’s face, their story, their life. 

My choice so I am fooling around

About a year or so ago Jen Kehl introduced us to the Mix Tape. Today she has given me the choice to make any choice I want. As you know, there is nothing I want to do more with a mix tape than to mess with Jen. Since it is April Fool’s Day that she made it YOUR CHOICE is just asking for trouble.

I thought the best way to handle this “choice” is to show how many ways that I have messed with Jen. But alas, I am only allowed to choose five. And Jen, since these are all previously posted I am making it easy on you. You just have to read the post and not listen to the songs.

The first time I ever did a mix tape I messed it up. Seriously not on purpose. But it became the start of a trend. Always sure I was using the right theme and well…not. I thought the theme was Stalker. But well it wasn’t and Kristi called me out on it. But this is my favorite song from that week. Back then I was such an idiot not only did I not know how to post the link back to Jen’s I didn’t realize Blogger had a You Tube thing to post actual videos.

Jen was probably happy I couldn’t figure out the link back. Then I made a mix tape for a friend….except I wasn’t supposed to. 

After a while Jen friended me on Twitter so I would no longer miss the theme. I admit I kind of got creative. She asked for Dealer’s Choice…I gave her gambling songs. I also gave her ABBA because you cannot get into trouble with ABBA.

Then for no reason I completely disregarded Jen’s rules and made a mix-tape just for Jen. See Jen is this great Zen personality but like all of us she has moments of Holy Crap I cannot take on one more thing. Just to remind her and thank her for letting me play along this year….

Happy April Fool’s everyone. I am glad to be your Foolish DJ

My Skewed View