I have had about a week to chew on the issues with my mom and my son on the cruise.  I am actually saddened by this and it is possible that this cruise did irreparable damage to our relationship.  I will not ever stop talking to my parents, I will always do the things for them that a daughter should do, and in most ways nothing changes…but, something is missing for me now and I can’t quite put my finger on it or articulate it, but I will try.

I am not blind to my sons difficulties, nor his behaviors.  Trust me – I live with them every day and sometimes they aren’t easy to live with.  I get frustrated when he doesn’t do something out of defiance, or when he mouths off or even gets aggressive, because he has the ability and coping skills to manage those behaviors – and he does – most of the time. Some days, living with Mickey is just tough, for both me and Minnie.

I am also not blind to the tremendous progress and growth we have seen with him in the 4 years and 2 months since he moved into our home.  At that time, it was not believed that he would ever live independently, his psychologicals showed very low intelligence, his fine and gross motor skills were a mess and he had never completed a day of school.  He raged for hours and hours and hours on end nearly every day, his speech was unintelligible, he skewed far younger than his 6 years and had the emotional functioning of about a 20 month old. And most of all, he was violent and aggressive – dangerous to other people.

Over the last couple of years though, I have had hope that he will not only live independently, but hopefully thrive.  We still have work to do, no doubt about it.  Following directions remains our biggest challenge, keeping control of emotions a very close second. His eating skills could still use some work, but he no longer shovels food with his fingers until he vomits – he just makes more of a mess than is age appropriate and slips into incorrect fork holding periodically.  This is a work in progress.

I, as his parent, have to pick my battles daily.  I will not turn every meal into a war zone to get him to hold the fork properly.  He knows to stay in his seat, he knows how to behave appropriately in a restaurant, he is not disgusting – he just eats to fast and ends up with food on his face, but this drove my mother insane on the cruise.  She turned every meal into a huge production of nagging.  Food is Mickey’s comfort and his coping skill, the one thing that convinced him to get on the ship in the first place was the food.  Arguing through every meal and getting onto him for excitedly ordering his food as soon as the waiter came to the table is not worth it.  I normally touch his hand or knee and remind him to slow down.  I will point to my fork when I see his hand has migrated down to the tines, rather than the handle. I do not make a huge issue of it.

The incident on Castaway Cay that made my mother decide to pack it up was that Mickey was asked to pick up some inter-tubes, so we could wheel her wheelchair away from the beach. He was talking excitedly and not paying attention and I had to repeat myself a couple of times.  This is pretty standard, if he is distracted and on a beach full of people he was definitely distracted.  I had to say “Mickey, Stop and  PICK UP THE TUBES!  He got upset, but he picked them up, but he threw a dirty look my way that ticked my mom off.  I don’t care about the look – he was picking up the tubes while he did it.  That combined with the fact that he had lost his rental tube over the rope to the snorkling area and freaked out because he thought Grandma would be mad.  It was easy to talk him down and it didn’t ruin anything, but the two incidents made her decide to call it a day.

Mickey was upset and took off running.  I know better than to chase.  That escalates further – I watch and make sure he isn’t being unsafe (running into streets) and will sharply call him if there is a car – in this case he ran to the tram circle, but the tram wasn’t coming, so I let him go.  He will come back – he doesn’t like to be far from people.  So, this was his venting of frustration. He was back with us and angrily fuming in about 2 minutes and he got on the tram without incident.  This incident though convinced my mother that perhaps we hadn’t made the progress that I think we have. She told me to quit fighting to get him moved from his current school placement.  She suggested that he will never work or live independently and that we would be lucky if he doesn’t end up in juvenile detention.  She told me not to worry about standardized tests because she doesn’t think he is going to graduate anyway. She told me that he doesn’t deserve or need extra curriculars because he can’t handle them.

Those statements were like a punch in the stomach and I have spent the last week trying to figure out if I am being objective in his progress.  Are we pushing for things that aren’t possible? Am I more blind to bratty behaviors than I think I am?  Do I let too much slide?  I certainly let more things go than I do with Minnie, but that is because to get his behavior to where hers usually is, I would have to nag him every waking minute – and that isn’t fun for anyone.  I expect please and thank you. I constantly remind him to hold doors or not barrel onto elevators (another big annoyance for both my parents on the ship). I do not accept violence or disrespect.  I expect him to behave appropriately in stores and restaurants. I would like him to follow directions the first time, but we aren’t there yet….but he will follow them.  I would love it if every single store didn’t set off a constant stream of “I wants”, but even with never getting in, we aren’t there yet, but he doesn’t melt down, he just keeps asking (and I tune it out).  I would like him to never get angry and yell or stomp or storm off, but we aren’t there yet either.  Where we are though is that he doesn’t get angry and kick the person nearest him – he doesn’t throw furniture over or destroy whatever is around him.  That is progress and there is still work to be done.

I know my mom was angry and I know she had a lot on her mind.  My dad is still in the hospital and we don’t know why.  My brother is still violently ill from the dialysis.  We were all a little stressed and Mickey was not at his best.  However, I wonder if she is right?  I don’t think she is, but I would be lying if I said that a future in the juvenile justice system doesn’t seem like a possibility.  His impulse control is bad, just bad.  He understands consequences, but he doesn’t always think about them before he makes choices.  He doesn’t like school and unless that changes – getting him through high school will be a battle.  A battle I intend to fight, but a battle no less.  He would love to join chorus and band, but do I know that he will be okay singing or playing songs he may not care for? Nope.  But, 4 years ago we didn’t have a lot of hope.  Now I do, and I thought my parents did too.  My heart is a little broken that in 5 days where he is outside routine, which is always tough for him, that she is ready to write that hope off as an unrealistic dream.

Are the coming years going to be easy or fun? Almost definitely no, but I will not give up hope.  I will still not spend every waking minute nagging him into compliance.  We will tackle the bigger issues with gusto and work on the small in more subtle and slow ways, as we always have and I believe we will continue to see slow and steady progress in most areas. The progress that we once didn’t believe he was capable of has convinced me that we don’t really know how high he will soar. I hope that my mother is able to see that too, when not so bogged down in her frustration with the ways in which he isn’t typical.

Sorry for another lengthy post.  My mom has been one of my  best friends for years and I am really weighed down with the heartbreak of knowing that she doesn’t believe in her grandson the way I thought.  Or maybe, she just doesn’t understand Autism the way I thought she did and assumed that his progress in areas made him suddenly typical?  I don’t know, but I am over here adjusting expectations – not for Mickey, but for my relationship with her.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s