SIGH

I try to be patient, and I said I try.

Every day and every night I have the same conversation with my child.  Mainly about dealing or making the everyday life skill choices he needs to survive in the real world.  He tells me he knows and he tells me it isn't an issue.

Then the night comes and we haven't done what we needed to do.  Yes, I can stand over him every night to make sure it gets done, it is only 10 minutes to take his medicine and get ready for bed by brushing his teeth and getting on his PJ's.  Easy right?

So you come home after driving one to robotics and the other to gymnastics to turn around and run an errand to come back to pick one up (20 min. ride and thankfully there is someone giving the other child a ride) and to bring the child home and not have him touch everything in the car since he had a slice of pizza and there is red sauce all over his hands and remember this child knows what he needs to do before bed.

So you are very tired of running around and you want to do something for you or just being on the go like many parents, you want to sit and not think.  You want a moment.  But you do have the other child to go and check up on and also to look over his homework because your husband is in bed asleep since he has to get up at the crack of dawn (thankfully I do not have full time paying job outside the home) working part time is hard enough and then when I have a lot of hours... anyway, you just want to plop after all the running around since they have been home you want to stop thinking. 
So you go and say goodnight and the child is reading a book in bed.  He is still in his street clothes and you really don't want to ask but you do "did you take your meds?"  or yeah I think I did, no maybe I didn't.... and so he goes downstairs and then gets upset because his brother is in the bathroom and he should be brushing his teeth.  Well honey you have been upstairs sitting on your bed and NOT getting ready that you really can't get mad at your brother.  He is taking his turn which you lost by sitting on the bed and not getting ready for bed.  Does he get this?  No it is his brother's fault that he cannot get ready for bed, however, he still needs to complete the first task of taking his meds.

Now this is pretty typical of most kids with ADHD, ADD etc.,... but this is the senerio every night and I mean every night.  He cannot or will not do this on his own, he won't creat a chart or write it down or what ever else the "powers to be" think he should do to help him because it doesn't work.  He needs the external brain, one to tell him and remind him.

He is in bed now, and I am afraid to go upstairs to see if he has on PJ's or brushed his teeth.  I am ok if he is not as long as he at LEAST went to the bathroom to go potty.  Again this is critical thinking on his own.  Oops just now I heard a drawer drop or something of his and another noise.  I dare not go but I think I have to REMIND him to get into bed and turn off the lights and try to sleep.  I think he took his meds now or attempted to and not going to worry about his teeth he can sleep in what he has.

Then in the AM we will go over this routine and I will politely ask me what he has done to get ready for school.  He will tell me and then tell me what his brother is or has not been doing and it really doesn't matter because he will still be in his PJ' or whatever he slept in and NOT eating breakfast or NOT taking his meds and NOT getting ready.... because he knows what he needs to dohe just needs someone over him to keep him guided or on task.  But that is my job but then if I am working I have a hard time getting ready for My job.  Will he get a normal routine??  I don't know I can only hope.

 

looking back

Someone posted on Facebook about their relationship with their FASD child and what they have gone through etc.  I think about Brandon and what I want for him and what does he need from us.

School thinks he does just fine because with FASD they hide what they don't know or understand very well.  They can mimic someone else to get by but how long can this last?

In Kindergarten Brandon used to go to the library once a week.  Every week he brought home a book BUT it was the same book.. "In a People House" by Dr. Suess.  He didn't bring any other book home.  He had learned to go to the library and pick out a book and check out.  What he couldn't figure out was that he could check out anybook.  He has his structure and routine on what to do and he kept it the same.

In first grade he had a pal named Tracy who helped him out and kept him organized.  I think she picked out his books and showed him what to do.  I believe the first week of school he brought home the book "In a People House" by Dr. Suess.  After that, he had a helper in the library and had different books.

Second Grade came along and he would pick out a book and each week it was a different book and he didn't have a helper, was he getting it?  Not really because now he was getting the exact same book that his brother had got from the week before.  He was literally seeing his brother come home with a different book so he realized he could but didn't know which book so he got the same one his brother had got from the prior week.  He was mimicing his brother.

By fourth grade he was bringing home books that were so far advanced for him but they were the books he saw other kids get.  He would want the BIG chapter books but could not keep focus on one sentence if the printing was small.  Thank goodness we were getting books at the school library and regular library.  He was not reading any of the books he brought home.

Now he is in 8th grade, he doesn't have library time or books and he reads books that are simple and he reads the same chapter over and over and reads where ever he thinks he should.  He does not read from chapter 1 to chapter 2, he reads a chapter anywhere in the book, so if I want to know how far he is.. he picks a chapter and reads it.. , I have tried to introduce some chapter books but that doesn't work too well with him.  He mainly is reading graphic novel and comic books, over and over. 

However, I have notice that he can have someone read to him and he can understand it pretty good.  Considering he can't follow a two step instruction and seem to listen to any direction he can understand someone reading a book to him.  Does that make sense?