Not sure how to handle things with Parker | Autism PDD

It is VERY difficult to live  life that is full of schedules.  I think that the word "PREDICTABILITY" really is more important to describe what our kids NEED.  Schedules are a way to creating predictability. There are other ways, some of which might suit one family better than another.  But our kids are not "spoiled."  There resistance to doing what we want them to do has far more to do with their brains literal inabilty to cope than brattiness (although, as kids get older and are more able to function well in the world, brattiness CAN be a factor).  What needs to happen is for us to manage our child's experience in life so that he CAN predict a lot of what goes on.  And, absent that, he WILL trust us to help him cope.  That trust in us build over a long period of time of KNOWING we will be there to help them get through the dips and turns of life and not blame them for their failures. Whatever we use to help them -- schedules, choices, PECS, etc. -- is up to us.  But to guarantee our children the greatest chance at learning to cope, we have to show them that life IS predictable and that they can fully trust us.  Because they HAVE to trust us more than the average kid has to trust his parents.  Our kids don't automaticlly learn from the world. They need a guide through life.  And that would be us.anymore, now that he has his dx. I'll admit, we have really catered to him to avoid tantrums and such. Most of the time his tantrums arn't throwing a fit, they are instead crying like his heart has been broken. Sometimes we just don't know if he understands certain things so we give in alot. Tonight my dd who is 8 wasn't feeling well. She wanted to take a hot bath. I knew this was going to be a problem. Parker always gets the first bath, that way he won't intrude on his sisters bath. I tried to sneak running the water tonight so he wouldn't hear, but he did. He started taking his clothes off, all ready for a bath. I told him he had to wait because it was sissys turn. He just started bawling like his heart was broken and saying, "take a bath, take a bath." It was just so sad. But, my poor dd just wanted to take a bath alone and relax. I offered to give Parker a bath in the sink. He grudgingly did it, but didn't really like it and whined a lot. After I had washed him up he didn't want to get out but he was making a big mess with water. I asked his sister if he could just get in for a few minutes. She said no but I kind of talked her into it. He only stayed in a few minutes, but it made him happy. He has been cranky all night. The thing is, did I do the right thing? Should he get his own way when he cries? Because he doesn't understand? Or should I be setting down the law and just making him wait and cry his eyes out? What do you guys do? I think I'm kind of afraid to be tough on him because I don't know if I'm asking too much of him or if he even completely understands everything. Believe me, he understands a lot, but I just don't know if he understands reasoning and sharing just yet.

Here is that famouse line again

"pick your battles"

This approach has always worked much more effectively with my son than hitting him with a surprise change in the 11th hour.  And, when you run into those impossible situations where you simply have no choice but to toe the line, try to come up with a way to make the alternative an even better option; such as, "your sister needs to take a bath first, but guess what, this means you and I get to play for awhile with XXX"....whatever your child's favorite toy/game is).  A lot of this does get easier with age as your child's reasoning abilities (or at least comprehension) starts to kick in.  We rarely have melt-downs any longer because of control issues....knock on wood!  

For my son, he didn't have to get his way to stop crying -- he just needed to feel understood.  So I would put him on my lap and say things like "that was really hard for you" and "it's not easy to be a little guy, is it?" and "it's hard when there's a change in the routine, isn't it?"  and "I'm on your team."

Works for us, but then again my son has never had as much trouble being flexible as other autistic kids I hear about.

 

I know how you feel, my son also will cry like his heart has been broken.  My son  is 5 years old. He now knows how to tug at my heart. If he wants something say a lollipop and the time is not right. I will tell him no. I will explain why he cannot have one now. He may get upset, but I know in the long run I am doing the right thing. You do have to pick your battles. I do not give in once I have made my decission, because that will just confuse him more. It is hard sometimes when they are crying like that, but they get over it and life goes on.

 

Care

 

 I normally change Jacob's nappy first, followed by Tom's in the morning as Tom has worked out that straight after nappy change it's downstairs to breakfast. So if I change Tom's nappy first and he then has to wait for his brother to be changed he gets upset. Sometimes though, I have no choice but to change Tom first and when that happens I try and reassure him but make it clear he'll have to wait. Some days he just has a little grumble and other days he gets really upset.

you did what i would have done,even with my NT kids.4 year olds need a little slack,it sounds like you did right by your ds & dd.

Just a little tip ,slip a little note in your dd's lunch box,or under her pillow,tell her how proud you are of her ,and what a great big sis she is,You may already do these things for your dd,it makes them feel so special.You sound like you are doing a great job.

God bless,Linda

They don't call it AUTism for nothing.  The rootword is auto, meaning self.  Our kids brains really only allow them to see themselves and their needs.  This is not mere self-centeredness.  It's autism.  When your son could get what he wanted when he wanted it, he simply could not FATHOM that his sister needed something that conflicted with his needs and that her turn would eventually give way to HIS turn.  This is an impossible concept at first.  Also, our kids lack the ability to predict.  I've often said that living as an autisitic individual must be akin to going down a roller coaster backwards.  You know there will be scary dips and turns but you CAN'T see them coming, so the terror grows.  The trick is to establish PREDICTABILITY so those dips and turns CAN be anticipated.  A picture schedule can do this.  Practice with turn taking can help.  Schedules and pictures and full predictability can go a LONG way toward making things go more smoothly.  And, yes, pick your battles.  It is the lot of a sibling of an autistic child to learn to accommodate autism in her life.  I have long believed there must be a special place in Heaven for the siblings of kids with all kinds of handicaps.  My 60 year old husband is STILL making accommodations for his 57 year old sister who was condemned to a wheelchair by polio at age 3.  And MOST of those accommodations have NOTHING to do with the fact that she can't walk.  Your daughter's life is going to be different from the lives of kids whose brothers do not have autism.  You might eventually want to track down a sibling support group for her.Thanks. I have to admit that Parker has led a pretty spoiled life without much asked of him. I know that I will have to start working with pictures and such. I know he'll have to learn more about taking turns and things like that. My problem is figuring out what he is capable of and what he is not. You guys are so helpful on this board. I think we do a pretty good job of making dd feel special. I always explain to her why he does the things he does and tell her she is such a good sister. She is very motherly towards him. Sometimes almost too motherly. We make sure and take her to do special things by herself too. She deals with a lot because of her brother, but she has a very busy social life/girl scouts/sports and that keeps her pretty happy. We also do special things for her like notes in her lunch, cutting her sandwhich with cookie cutters, special treats, etc. It's a hard balancing act and I hope we are doing enough. She also has mild ocd so if things get too focused on Parker, she tends to have anxiety. Not long ago I could see it cropping up and had dh take her to a movie and to play video games. That really seemed to help a lot. I would love to find her a sibling support group or even counceling. Thanks again. (Sorry if I'm rambling)

The rigidity thing, in my experience, is what tzoya explained - they need to have predictability.  The good news is that when language advances, you can provide this predictability in the form of explanation about what's about to happen.  As his language improves, you shoud hopefully see a corresponding drop in this inflexible adherence to routine because you'll be able to "warn" him of some impending situation so that he can prepare himself for it.  This has been my experience with my daughters, especially Abbie, who was extremely senstive to routine and ritual and very poor at transition, but has gotten worlds better as her language has improved - we just need to carefully foreshadow events that are likely to cause her to get stressed.

It's not the routine that's the important thing - it's the predictability that matters.

We're beginning the process of explaining to my son why his sisters are so 'needy' - for lack of a better word.  He's six, but has been dealing with a life of twin autistic siblings for 4.5 years now.  Poor guy, his life was changed as dramatically as our was, and he was only 2.5 when his world was sent all of of kilter!  He's good, though - such a good boy.  He tries to teach them things and he corrects their language and plays with them.  This is a big change from when he was little, and mainly wanted to push them around and yell at them!

fred39133.3424074074I know we talk a lot about schedules. I know a lot of kids absolutely REQUIRE these in order to maintain. I have never been good with this so my son has had to learn to be flexible. I would explain things, redirect and offer subsitutes. Sometimes I would let him plan the changes. One of the things that is most commented on with Shawn is how well he handles change. The change needs to be explained and then questions need to be answered then he is fine.  Every kid is different though. NT or autistic. I agree to keep some things off schedule. We offer substitutes to help from having a complete meltdown. I noticed yesterday that Payne has gotten used to the way we get to the store so that will have to change up more often.
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