Autism is not a four letter word

NSVAR is happy to have our friend Heather Glaros as a guest blogger on our page! You can find her blog at http://shriekingvioletky.blogspot.com/  as well as find her on Facebook! If we are lucky, we will hopefully see more submissions from her!

AUTISM IS NOT A FOUR LETTER WORD

 
I remember when we got Joshua's diagnosis. It was a long, daunting process that had taken almost four years. The first time we had him evaluated he was four years old and in his last year of preschool. We were told he was just too smart for his age and was bored. That was the reason for his outbursts and "quirky" habits. Jump forward two years to the first grade and nothing has changed. In fact, it has gotten worse. So we go through the whole process again to get the same answer. He's just too smart for his own good. This had now become unacceptable. Finally, at the end of his second grade year we got the answer. Asperger's Syndrome, or as it would be called now, high functioning autism. Even though I was familiar with Asperger's and had a mom's intuition this is what was going on with my boy, it still felt like someone had punched me in the gut.
 
 Now that we had a diagnosis, what do we do? Who do we tell? My husband and I decided that beyond telling family, it would be on a need to know basis. We quickly found out that everyone who had regular contact with Joshua needed to know. Friends, teachers, karate instructors, parents of his friends, every single person who we trusted with our son had to know. It was the only way they would know what to do to help him. We were not in any way, shape or form embarrassed by autism. It was more of a way to protect Joshua. We didn't think autism was a "dirty word" but we didn't want him to be labeled or thought of differently. My biggest fear was that once that word was attached to my son that would be all anyone would be able to see. An autistic child, who can't do this and can't do that. What he CAN do far outweighs anything he CAN'T do.
 
 Fortunately, that has never happened. All the people who know and love Joshua still see him as just Joshua. Children with autism are so much more than just a diagnosis. They are loving, intelligent, creative, and above all they are people. Autism is nothing to be ashamed of and in order to raise acceptance, we have to talk about it.

10 Things Autistic Kids Need in a Pediatrician

This is a blog post written by a great friend of ours, Sharon. Please check out her site Autism NOVA because it's full of great information and insightful blog posts!

10 Things Autistic Kids Need in a Pediatrician

In a perfect world, each child would see a pediatrician who remembers the child’s name and personality, works closely with parent to identify issues and solutions, treats the child’s illnesses, provides sound medical advice, and respects the parenting choices made for the child. New parents interview multiple pediatricians hoping to find the right match for their family.  I’ve seen more planning go into pediatrician searches than you’d see for a large scale baby shower! Moms, new mothers in particular, want a good pediatrician! We want a medical partner, not a cattle call practice.When you have a good pediatrician, the worst issues are easier to handle and struggle through because your doctor is a partner working with you. When your pediatrician isn’t all that great, it’s a struggle. It’s more than a struggle, actually. At times, this one person you see a few times a year can make you question your parenting abilities and choices, can heap on guilt and can make you feel like a foolish nincompoop.  Yes, nincompoop.When your child has special needs – great or minimal – the need for a medical partner is even greater. Without the teamwork, without the medical partner working with you to reach your goals for your child’s treatment, without that medical support, it’s a hard battle uphill, in the rain, barefoot, with leeches and mosquitoes, hidden pits, hissing snakes and natives in the bush throwing rotten vegetables at you.  Well. That’s what it feels like – lonely, hard, hurtful and impossible.My son is diagnosed with high functioning autism. He seems like a pretty typical kid to most people. He has some social challenges, for sure.  After experiencing a particularly wonderful pediatrician and then a pretty lousy pediatrician, I have some words of advice to all you peds out there.10 Things Autistic Kids Need in a Pediatrician

1. Understand the nuances of my disorder. 

Just because I don’t stim the way you perceive an autistic kid stims or because my verbal skills are advanced, it doesn’t mean I don’t have autism or than I don’t struggle.  No two cases of autism are exactly the same. Try to understand how it presents in my life.

2. Don’t blame my parents for my behavior.

This goes back to point number one – understanding my disorder. It might take me three years to learn how to nicely handle a cat. I’m not trying to be mean to the cat; I think those yowls are funny sounding and they are how the cat is saying it’s having fun. I’m not being bad and my parents are really trying to help me learn how to behave properly. But my perspective is so different from yours so I have to relearn things.  This is an innate part of who I am, not a reflection of poor parenting.

3. Don’t blow me off during my exams.  

Yes, I may talk about subjects that you don’t care about. I am hyperfocused on things you don’t understand. But listen to me. I just want to be heard.  I like you and I’m trying to connect with you in the only way I know how.

4. My body is a mystery to me. 

I can’t explain my sensory overload. I can’t explain why making noises calms me. I can’t help that I wet the bed. Telling Mom it’s in my head and that if she will use the right words, I’ll be able to change these things isn’t going to work.  Unfortunately, “believing” that I can stop wetting the bed really isn’t going to make a difference.

5. I’m a pretty cool kid. 

I may be a bit “left of center”, but I’m pretty cool and have lots of positive points. I’m not a trouble maker, a discipline problem or a nuisance. (See #1, again.)

6. Take some time to get to know me. 

By understanding my likes and dislikes, you’ll be able to help me better and better motivate me to endure procedures and tests I don’t want to do.

7. I want to understand.  

Sometimes you will have to take more time explaining procedures to me. I like to know all the details. I want to know all the steps. I ask because I want to understand.

8. Be proactive! 

I need you to help my parents find the resources I need for occupational, speech, behavioral  and other therapies. They need your suggestions and direction. It can get pretty overwhelming for them and sometimes they need you to help point them in the right direction.

9. Be involved. 

It’s easy to see me once a year for a check up and a few shots. Any run of the mill, average doctor can do that. I don’t need that. I need you to be an active participant in helping me develop and progress. If my parents need a prescription for incontinence pads for the bed or a special medication without dyes, don’t be the roadblock! Help them help me. Read all the reports from the other doctors. Provide input; the more people working together to help me, the more progress I can make!

10. Be an autism friendly doctor. 

From your bedside manner, to the way you conduct your exams, to your research and education about autism, be stellar.  This means being concerned about how fluorescent lighting in your office can affect a child with autism. Understand the possible impact of background music playing in your office. Do you have multiple doors to help keep kids from running off? Do you know the specialists in the area? When the child is hyper-focusing, can you work around that for the exam? Learn about these kids and be flexible enough to work with them instead of expecting them to work around you.