Skip to main content

“But he looks fine…”

 "[So-called] Mild autism doesn't mean one experiences autism mildly... It means YOU experience their autism mildly. You may not know how hard they've had to work to get to the level they are." -Adan Walton

I got the comment the other day basically saying that since Drew was behaving so well, his autism must be less severe. I just smiled politely and said that it has taken a lot of hard work to get where we are, but I'm not sure if they really knew what I meant.  

Autism is now diagnosed in 3 levels. I have attached an image below describing the different levels. Drew was diagnosed with level 3, meaning he would require the more support. This has been through years of early intervention, (speech, PT, OT, and special instruction), BSC/TSS, outpatient services, early preschool, routines, trial and error, patients, and lots of tears have brought us to where we are. There are still days that I don't want to take Drew certain places because I'm unsure how he was react. Luckily he is still small enough that if worse comes to worse I can pick him up and carry him to the car to escape the situation, but that won't always be the case. I guess the age old saying "Don't judge a book by it's cover" still rings true today. Don't take one interaction you have had with someone and reduce it down to their life must be so easy up to this point.  As always, thanks for reading. 





Comments

Post a Comment

Popular posts from this blog

D-Day

Solivagant is defined as  a  solitary wanderer and although he will never walk this journey alone, Autism, by definition, makes communication and social interactions difficult.  November 4, 2019 was D-day, Diagnosis Day. But lets start 3 years, 4 months, and 10 days ago... June 26, 2016, Andrew Ezra was born by emergency c-section at 12:10am. He was 6lb 12oz and 20in. Drew was born 4 weeks early. We ended up staying in the hospital a week due to Jaundice. Once home, we had a happy, smiley baby! He had blonde hair and blue eyes and everyone thought he was adorable!  Now, while I was pregnant with Drew, I had gestational diabetes and had to go down to Pittsburgh to get a fetal echocardiogram, since there was a risk of heart defects with GD. Thankfully, Drew did not have any heart defects. After, I was approached to be a healthy control participant in a research study which looked at brain development and heart defects. It entailed a MRI in womb, a MRI at age 1, and a developmental
5 comments
Read more

Daily Struggles

A diagnosis is burden enough without being burdened by secrecy and shame. -Jane Pauley  Sometimes it’s hard to know what is typical of a 2 or 3 year old when it comes to behaviors. You always hear that you shouldn’t compare your child to any others, but then how do you know when there’s a problem? With this post I want to write about our day to day struggles. Are some of them going to be typical 3 year old behaviors, without a doubt, but just consider them on top of other behaviors and you can see why this mama is so tired sometimes.  Since we brought Drew home as a newborn, getting him to sleep has been horrendous! Once asleep, thankfully, he’d sleep all night and still does. It took many, many conversations with an OT and Special Instruction therapist and weeks and weeks of keeping a log of bed time routines to figure out the perfect combo. Before the therapists helped, it could take up to 3 hours to get Drew to sleep. And most of that 3 hours included crying and screaming. W
2 comments
Read more

A Lone Place

A child's laughter could simply be one of the most beautiful sounds in the world"  -unknown I thought I would write about playgrounds today since we have had a couple of good experiences this week. This week, we visited the play area at Burger King and at a mall and Drew actually made a new friend at each place. But first let me give you a run down of how things normally go at a playground so you know why I was so happy.  Whenever Drew and I go to a playground, I usually have to convince him to use the playground equipment. Sometimes he likes the slide, but almost always he will do everything once and then it is off to wander around the outskirts as far as I will let him. I can't even count the numorous photos I have of him wandering away from the playground. When there are another kids there, I always encourage him to wave Hi and I tell the other kiddos his name. Things usually start out ok, but when other kids start talking too much at Drew, asking him questions h
1 comment
Read more