Light it up BLUE

On April 2 my family and I will being joining - what is hoped to be the world - in lighting it up BLUE.

What does this mean exactly?

Well, www.AutisimSpeaks.org for the third year is hosting an Autisim awareness function where you place a blue light bulb in an outlet in your home and make sure it is on on the 2nd of April. There has been a lot of turn out in the previous years across the world for support and this year my family will be joining.

Helping Your Extended Family Understand Your 'Special' Child

When my oldest was eighteen months old we were in a local super center doing some shopping.  An elderly couple was not far from us and could hear the tantrum my son was having.  At this point my husband and I did not know that he had Asperger’s Syndrome or bi-polar disorder.  

The couple hearing his tantrum said something to the effect of, “Oh, my gosh.  How can those parents just let him act that way?   It is no way for a four year old to act.  They need to just spank him.”  My oldest has always looked older than he is; he is ten now and stands five feet three inches tall.  I turned to the lady and said, “I heard every word you just said.  I find it beyond offensive that you think that my almost two year old should behave any different.  It is wrong of you to pass judgment on him when you don’t even know him.”  She was shocked that he was so young, even asked to see proof, and expressed that she felt ashamed.

This is just one example of the misunderstanding people have of children that they don’t take care of.  The Mayo Clinic describes it best like this; Asperger's syndrome can be a difficult, lonely disorder — both for affected children and their parents. The disorder brings difficulties socializing and communicating with your child. It may also mean fewer play dates and birthday invitations and more stares at the grocery store from people who don't understand that a child's meltdown is part of a disability, not the result of "bad parenting." (Staff, 2010)

I, myself, have seen this misunderstanding in my extended family as well.  My boys are two of four boys that are being treated for Asperger’s Syndrome.  Not all of the family has shown an interest in knowing how to interact or understand these children.  The Mayo Clinic has this to say about how you can help others help your child, Most children with Asperger's syndrome have no visible sign of disability, so you may need to alert coaches, relatives and other adults to your child's special needs. Otherwise, a well-meaning coach may spend time lecturing your child on "looking at me while I'm talking" — something that can be very difficult for a child with Asperger's syndrome. (Staff, 2010)

Most importantly is to always remember that you are the voice and advocate for your child.  The more you know about their special needs the better you are at teaching others to understand them.  For instance, most children when they see another child get hurt they ask if they are okay and then get help.  Not an Asperger’s child, that notion never enters their mind that there could be a problem or a need for an emergency.  I remember when my oldest was younger and we were at a family camp out, he was playing near the adults with his cousin and the cousin’s dog.  His cousin ended up wrapping the dog’s plastic coated wire lead around his neck.  My son had enough thought to put his fingers between the lead and his cousin’s neck but neither boy thought that this could be a bad idea.  There were adults that saw what was going on and were able to get to the boys before anyone got hurt but, the lecture that was given afterwards was lost on the boys and we really didn’t know why at the time.  Now we know that both boys have Asperger’s Syndrome.

I have learned to be more objective when it comes to kids I see at the grocery store, church, playground, etc.  One of those kids might have a hidden issue that I don’t know about.  Knowing what I know about how I felt when judgment was passed on my son, and knowing that he has hidden issues, the last thing I want is to be like that elderly lady in the super center all those years ago.  Sometimes it is not the parents fault.  Be kind and understanding, because let’s face it, we don’t always know the situation.

Staff, M. C. (2010, Nov 18). Asperger's Syndrome: Coping and Support. Retrieved from Mayo Clinic: http://www.mayoclinic.com/health/aspergers-syndrome/DS00551/DSECTION=coping-and-support

Our Recent Vacation

My youngest son, who has recently been diagnosed with Asperger's Syndrome, and I just got back from a two week vacation to visit my mother. This was full of firsts for him. His first time being away from Daddy for more than a weekend, the first time being on a shuttle for four hours, and the first time flying in an airplane. I was so very nervous thinking about all the people he would be coming into contact with, being a very small space with lots of people and noise, how would he react?

He did really well, even when we missed our flight due to being held up at security and had to wait three hours for the next flight. I did learn that if I am to fly with him again I HAVE to have non stop flights. On our way home we had one stop to let some off and others on and he had a MAJOR meltdown. It got so bad that the captain got his attention and asked him to stop, told him, "that's not how we act on his plane". Now the captain's comments did offend one of the flight attendants, who apologized to me, but it really didn't bother me because it took my son off guard just enough for me to get him calmed down.