Tuesday, December 12, 2006

Dear Noah:

SO grandma C. fell and hurt herself so we decided to go and take her trash out for her today. We got there late afternoon.......had already had supper......you could tell she did not feel great. My mom or your grandma L. had told me she and your aunt Becky were going to come up to see grandma C. later as well......bringing a cheese pizza and chips for their supper.

You wanted SOLE time alone with grandma to visit.....while I got the trash ready...etc...you were in heaven as you had her all to yourself.......talking away about your new railroad crossing signals and signs and bells we had made the night before out of foam sheeting.....which you had taken to her house to show her......you were really enjoying it all. THEN I came in from outside as I was done with the trash....you informed me to sit down but NOT to talk to grandma (as you were not finished with her yet). SO I did...but grandma C. got a phone call. This was with a lady who did not easily hang up.....so grandma C. got swept up into a phone call for over 35 minutes and this took your quiet/alone time away from you .........which I knew was going to be bad......because I knew your other grandma and aunt were coming soon and then they would be there to visit and talk and that would only upset you further if you did not get it out of your system prior to that time.

I should take you up and let you spend some time at granda C.'s house....just alone with her....you can talk all you want.

SO anyway.......grandma C. was taking forever to get off the phone. You finally said "just give up on trying to talk to grandma mommy."......and we talked. Finally she got off the phone......but at the same time here came your other grandma and aunt.......and you started crying....realizing you still were not going to get a chance to talk to grandma C. You started crying and saying you did not want to see anyone...NO ONE ELSE....everyone had to stay out of the room so you could be with grandma alone......auntie came down one hall to the room and grandma L. the other way.......you were trying to run to get OUT of the room.......you did not want them seeing you or you seeing them....but with one on either hall you were trapped......and you panicked and let out the loudest scream/shriek.......I am sure the neighbors heard you. ON AND ON......crying with the scream/shriek.......grandma C. asked what was wrong with you.....Auntie Becky said "oh he is just not getting his way."

Now this sort of upset me......but I let it slide. After all it is not really because you are not getting your own way like some spoiled brat.........you are autistic and have problems understanding SOCIAL situations let alone the concept of "you have to share visit times with other visitors if you are not the only one there!" You do not realize your behavior was not acceptable at someone else's house or even our house. You still have trouble communicating your being upset QUICKLY to someone else......so you still sometimes SCREAM AND CRY VERY LOUDLY!!!!! You also physically cannot have some people LOOK at you......as it seems to be painful to you sometimes. This upsets you tremendously. You also cannot look people very much in the eyes I have noticed......this has been increasing lately......I don't understand why when you tell family or friends things that upset you...or could set you off......even teachers...they sometimes just seem to ignore that and think you should be able to handle any teasing like other kids would.......etc......trust me...this does NOT work with you.....because you are not able to handle things like that as other kids might.

It is a PROCESS to get you to ever calm down to try to understand what is happening and why and that it is all OKAY.......you said to me "mommy...I wish I had my calm down book!" and I told you I was going to bring it but did not because I did not think you would need it. I guess I was wrong and I guess it will become a standard item again when we pack up to take things on mini trips. I told you that you did not actually have to have the book to WORK through the calming down process.......as you knew what the book said.....what to do......so we began the process.

Grandmas and auntie went to the kitchen to eat and visit. We stayed behind in the living room working through it.......stopping.......remembering to breathe.......remembering to count and take deep breaths and then BLOW OUT all the anger and frustration. On and on slowly.....we did this...finally calming you down.........where you could start thinking more rationally again......reasoning......I finally coaxed you out to visit with the rest at the kitchen table.......you had a snack and showed everyone your RR crossing signals we had made.......tape recording the conversation the entire time......playing it back.......re-recording......playing it back........learning to take turns TALKING during the visit. Learning it is OKAY for others to talk to grandma C. even if you also are there to visit. Things like that. You ended up doing much better.

I noticed auntie during all this just sort of rolling her eyes a few times......I think part in disbelief of your behavior......and also in part like "oh no.....here we go again" because the last time you were around all of them you cried and cried and whined and moaned about every little thing. I have seen this same facial reaction in your grandpa L. I know he cannot handle you.....and I think some others just can't. Grandma C. caught on really quick and knows to just do things naturally to make you happy for a moment......and you will then come around pretty quickly...I don't think your auntie still understands just BEING around even family members sometimes just bothers you.......in fact...today was the FIRST day in a long time......over a week......where I finally was able to get you even OUT of the house.....even dressed........as you had not been wanting to SEE ANYONE else....let alone have them see you. I had stretched our pantry to the limit for you for food......because with you being so picky and specific about certain foods to eat......we were running out of things for you....but you stretched it to the limit because you did not even want to have to get dressed to go to the store!

I think sometimes everyone around us still thinks you are just behaving like a spoiled brat.... doing some things on purpose...and if I swatted you or something you would straighten up. It is not about that.......you are sooooooo sensitive to little issues we all take for granted. TOO many coming into the room before you are prepared can be too much for you to handle. You have REAL physiological reactions to things......they are real........not things you make up. They are painful......OF course sometimes it seems too much to ask of family to try to keep making the little compensations or changes needed in order to keep you on an even keel..........I do it like it is second nature........most don't want to be bothered or inconvenienced and I think in part they probably think if you cannot behave and handle things then you should just go home. They just don't want to have to deal with it all.

Well this is our life....we live it every day....some days are better than others......some are great.......some are really bad for you.......I have learned to not rock the boat.........to keep it going on down the river smoothly......avoiding all the obstacles that could knock it around......put holes in it.......capsize it or make it sink. BUT............you also "have" to be around and put into situations......like tonight....so we can do exactly what we did.....which was to work through it and focus on how you SHOULD REACT when things happen in your environment that do not please you. ACCEPTABLE things.....

And as usual.......this meltdown moment took it all out of you. You were yawning and acting like a zombie before we left.

I then realized we had captured all this on tape.....and I was going to post the SOUNDS of you here tonight........but unfortunately I did not remember all this till after you had already retrieved the camera/tape and erased it.....because you did not want to hear yourself screaming and crying again you said.

SO.......because of that statement I KNOW you are realizing your behavior was not appropriate...which is HUGE.......because it is one of the first steps in learning how to correct that.

SO......it was a tiring night...I need to take you to see grandma C. alone.........for a nice visit. Maybe I can take a nap while you visit with her one day.

You got to bed very late again tonight which also does not help. YOU MUST have at least 10 hours of sleep to function and do your best in the daytime.

okay......now at midnight I have to get ready to work. We had to stop at the store to pick up groceries as it was one time I KNEW I could because you were already OUT! I am getting a late start......I am exhausted.....physically and mentally....emotionally......drained......but now I need to try to make some money so we can continue to pay our bills......

i love you........even despite all the frustration and problems.

mommy :XXXXXXX

1 comment:

Cathy said...

We have "auntie" here too. I love the eyerolling. Sometimes even with a true diagnosis, our loved ones just don't want to understand what our little ones are going through and the huge effort we make as parents to help our kids with the issues they have. I commend your calm patient nature in this situation.