Josh and deliberate parenting

It isn't much of a surprise that the largest 'tag' on my blog is Josh.  He takes up so much of my time, effort and thought that I sometimes feel a bit guilty that the other boys get swept aside in the encompassing wave that is Josh and his ASD.  Starting in February I will be reducing my hours at work to be able to focus more on my children.  This is rather scary for me because I have always been the one to carry insurance for our family and due to the nature of changing insurance, we may go for a while without insurance for me or the boys.  I have faith that this is the right path for us to take and am trying very hard not to stress too much about the insurance in the hopes that because we're trying to do right by our family, we won't have anything bad happen during our non-covered period.  So if we become secluded hermits and never leave home for a few months after the new year, you'll know why.

I've been in contact with Josh's OT (occupational therapist) and from those conversations, have felt the inspiration that I need to be more deliberate in parenting Josh.  The child has had a lot of upheaval in the past few months: a new baby, mommy being home all the time, mommy returning to work, a new school... No wonder things have been a little rough around here.  Some evenings the weight of dealing with all of this seems overwhelming, and then the guilt about complaining or feeling overwhelmed comes because this is the path I've chosen, including continuing to have children.  I was reading stories about siblings of ASD children and probably 90% of them are of the perspective of the older child being typical and how they dealt with a younger sibling with ASD.  I have a feeling we are among the minority of parents who keep going when their first has a developmental disability.  And I've never come across another family who had so many kids in a short time with their first being autistic.

So I felt thankful for the inspiration in the midst of the "I'm not drowning yet, but the water is sure rising fast" confusion on how to help Josh.  I am making a deliberate effort to work on his fine motor skills, finding ways to instruct him on empathy and presenting a calendar to help him understand future events.

First off, empathy because I have such darn cute pictures:

Josh loves Sam in a way that is so different from how he interacts with Ben.  Due to their ages, Ben and Josh compete and fight over pretty much everything.  Yet I will hardly ever find them separated.  Sam (until I'm sure he reaches the age of wanting the toys for himself) doesn't really threaten Josh in any way with the notable exception of that when mommy is feeding him, she can do nothing else.  Sam lights up when Josh interacts with him and is already trying to wiggle after him on the floor.  I use Sam to help Josh learn empathy and compassion.  When the baby cries, I ask Josh what he thinks Sam needs.  Even if I'm not doing anything, I ask Josh to give Sam a binkie, or simply to go help Sam be happy which entails Josh sitting next to him and cooing/playing with him.  Josh has learned to express feelings and emotions "he's happy/sad/hungry" and finding a correlation between how Sam acts "Look, he's smiling at me" and what he's feeling "he must be happy."  The other day when my grandmother was watching him she yawned and Josh asked if she was tired.  This is a big step for my little guy.

Fine motor skills.  This one is frustrating for me because it inhibits Josh from doing so many tasks that would make my life easier, such as being able to dress himself and feed himself (without making a huge mess). 

I started with stacking cheerios on a wooden skewer, but that was too easy.  The next stage involved beads on spaghetti noodles, which did present more of a challenge to him, however it also had an unintended consequence.  Lately Josh has gone back to very rigid, linear thinking.  Do you see in the picture above how the colors are put on in a certain order?  This is how he put them on the very first time and now he refuses to put the beads on in any other order or position.  When I told him to start with a different color, he got so agitated he started shaking and while I stuck it out and literally FORCED him to put the beads on in a different order, I've noticed that when I've let him do this activity on his own on other days, he reverts back to putting the beads on in that same pattern.  I really got on his bad side when I told him he had a noodle and I had a noodle and I wanted to put the beads on my noodle in a totally random fashion with no pattern at all.  He got incredibly upset, even when I wasn't trying to dictate his tower at all.  I was doing it wrong because it wasn't how it was done the very first time he tried the activity.  It was very hard to end that lesson on a good note.

Another unintended side effect of his rigid thinking happened the other night at dinner.  I had made the boys eggs and then once David got home later he and I ate some Mexican shredded chicken and rice that I was sure the boys wouldn't like, hence the reason why I fed them eggs.  As we were eating, Josh decided that he wanted a bite, so I gave him some off of my fork.  (Yes, kind of gross, but I'm that type of mom.)  He liked it and ended up eating most of mine, sharing with me off of my fork.  The next night I gave him leftovers of the meal and he had a total meltdown because I gave it to him in his own dish with his own fork.  He told me he couldn't eat it and said I had to help him.  Since I had a baby to feed, I told him that he had to eat it on his own.  Cue dramatic meltdown.  His utensil skills are lacking but he gets along alright, but that night he wouldn't even hold a fork or spoon in his hand.  Through a flash of insight I realized that because the very first time he had that meal, I had indeed fed him off my plate like a little baby.  He expected me to feed him like I had before.

Important lesson learned: I need to stop feeding Josh off of my plate, especially when it is a brand new food.  Of course this is rather difficult, because often the only time he will eat something new is if it comes off of our plates.  I guess the best thing to do is to give him a single bite, and then if he likes it immediately get him his own plate.

Josh's schedule changes almost daily and in talking with his care coordinator, we decided to try out a visual schedule for him.  I bought a magnetic dry erase board and the project team at the early intervention center made me up magnetic laminated icons to show what is set to happen in each day.  I have icons to show what days he gets to use the ipad, when we go to church, when he goes to school, when Grandma is coming over, when he gets to go to Grandma/pa's house, when he gets to go shopping, and more.  Right now I have a big round magnet that we move to the new day each morning, but I'm hoping to get a magnet with Josh's picture on it after the winter break that might help him understand the system a bit better.  We've only used it for two days, so I have hopes that as he gets used to the calendar it will help clarify when he gets to do things and will help him get out of the "if it doesn't happen right now, it will never ever happen" state of mind.

Whew... that was a long post.  This journey we're on with Josh has a lot of bumps and detours, but he truly is a joyful child and full of sweet innocence.  I'm very thankful for the resources we've been given and for the inspiration from above that has helped me focus on what I can specifically do to make Josh's path through life a little easier.