Messages By: glenda3b

I just wanted to say the best part of this show was the message someone left about not surviving through the day but dancing in the rain.  I'm a mom of 3 kids under 5.  Two with autism, and one baby. 

I think its pretty ridiculous ye are all arguing about the cause.  I know there is research into the causes being done, and why not leave it to the professionals instead of assuming you know everything by telling everyone "oh its definitely this, or definitely not this".  I doubt you really know.

Thats one of the harder parts of autism, the not knowing.  They say early intervention works.  But there are people who start early intervention with their children at age 2 and they still don't gain language skills (talk), and there are people who start at age 5 and they improve straight away.  There are kids who go on those special diets and all of the sudden they see massive improvements, and there are kids who it doesn't change anything.  What the previous posters are saying about each child being different with autism is true.  I have two sons, both autistic.  They are like polar opposites.  And neither one are physical in a mean way.  They both have meltdowns, as most people with autism occassionally to frequently do.  They react differently during these times.  They are unique individuals.  They have loads of personality!   But I don't have a clue what their functioning skill level will be when they are 10, 15, 20, 40?  They could both live at home for the rest of their lives, or they could be extremely high functioning as they get older, make many improvements and go to a University.   You just do everything you can and hope for the best.

I agree that you should not define a person with autism as only autistic, as they are so much more.  They have likes and dislikes.  Its just like saying everyone of a certain race or ethnicity is the same, when they are clearly not. 

Another challenge of autism is that my boys look perfect.  People have certain expectations of children who look like a cute, well behaved, little boy.  They don't expect them to start screaming in the shop because it gets too crowded, or to cover there ears if they get overwhelmed.  They don't expect them to start crying because you touched their hand.  And the biggest thing people DO expect of your child is to talk back to them.  Neither one of my boys have functional speech yet.  People talk to them.  Say "hi" whats your name, how old are you?  Are you having fun playing?  One of my kids won't even look at them and would act as if he didn't hear you (although his hearing is perfect).  The other one would look at you and he has quite an extensive echolalia and would probably come up with a phrase or a few words that had absolutely nothing to do with what you asked him.  He can sense your tone, so he would answer a question, but most of the time its a yes or no because he doesn't actually know what you're saying.  So if you say, whats your name, he might say no. 

My main point is.  The kids are the focus.  Don't make it about why.  Just make it about them.  About helping them and being there for them.

The hardest thing for me is making time for myself.  Because I think most parents of a child with autism will tell you its a 24 / 7 full time gig.  And you can sit there and tell me that any child is a 24/7 job.  But its not the same.  A child without these challenges might sit quietly for a while while you get a cup of coffee or are making dinner.  It IS different for every child with autism.  But mine require constant attention, support, and supervision.  My best bet is to keep us all in one room (or two rooms joined together) for a good part of the day so I can see what they are up to the entire time, and make sure they are safe and well looked after.  This means not cooking proper meals (a lot of the time), or needing to make time to eat (they don't eat regular foods, they each eat different things, are very picky about what they eat), not getting time to do pretty much anything that doesn't revolve around the kids unless they are at the pre-school (both at the same time), or in bed!

I also wanted to say my oldest son is in aba which seems to have helped a lot.  I didn't see many people posting about that on here.  - the tutors come to our home and work with him one on one?  That is in addition to speech therapy, occupational therapy,  their psychologist, pediatrician, nutritionist, and physiotherapist.  As well as attending a local pre-school part time for exposure to other kids! :)

Sorry about this being long.  I hope it gives another side to this issue! :)  I guess I want to end by saying I'm not upset that my kids have autism.  I accept it.  Its a small part of who they are.  I do work with them on the "little things" as does their dad, to try to encourage them to develop new skills.  But I don't want to waste any time worrying about what did this to my kids, when I could be spending time with them.