Life On The B Side

Taking all that life throws at us one moment at a time

On To The NEXT Next September 11, 2012

Well, our social skills group last Saturday was not the smashing success I had hoped it would be.  Me being there had zero impact on Jay’s ability to focus on the tasks. He sees that place as one big play ground and nothing more.  He’s happy when he’s there.  But he’s not benefiting from being there the way they intend him to.

In a lot of ways, Jay was not the most severely affected kid in the group, but he was the only one repeatedly running out of the therapy room to jump into a ball pit or go down a bumpy slide or zip-line across the gym.

 

When it was “walk around the circle and introduce yourself” time, Jay did OK for the first 2 people but quickly lost interest and then ran off to jump on a big cushion.

When it was “parachute” time, Jay refused to hold the handles.  He stood beside me and darted under the chute when it was raised.  He spent the entire parachute time under it laughing and having a grand time as it fell on him and then got raised up again.

When it was “pick up these small items with big tweezers and put them in the bin” time, Jay picked up a few items with the giant tweezers and then decided it was more productive to scoop a bunch of things up in his cupped hands and dump them in the bin that way.  (He wasn’t wrong. It was faster)

Then he ran out of the room and went down the slide.  Laughing the entire time.

When it was time to roll a plastic tube from one kid to the other, Jay rolled it once and then repeatedly dropped himself on his knees and rolled himself around the room.

When it was “look in the mirror and identify body parts and facial expressions” time, Jay climbed onto my lap and fingered my earrings.

 

The therapists tried giving him a big ball to sit on to help him regulate his system.  He got up and threw it across the room and then chased after it and threw it again.

They tried putting a weighted vest on him.  They tried giving him squeezes.  They tried letting him take turns between doing one thing they asked him to do and getting one ride down the slide.

Bless their hearts, they tried.

 

Yesterday evening we tried a 3rd type of therapy.  No more groups.  Just me, Jay and a therapist.  He had her undivided attention.

She did not make life easy for him and he didn’t like it one bit.  It was still play therapy but she didn’t allow him to be as free as he likes.  In between his complaints about being restricted and all his wiggling, she did get him to imitate her in some ways.  Towards the end of the hour, he was quiet(er) and they were drawing and erasing pictures on a chalk board.

It was difficult but both the therapist and I think this is what he needs.  For now.

 

This will be a harder therapy session for our family to manage.  It’s more expensive.  It doesn’t end until 7:30pm which means we won’t get home until almost 8pm, which is the kids bed time.

But we’ll make it work.  We’re not big on spoiling or giving our kids everything they want but CC and I are determined to give our kids what they need.

 

 

 

 

…..

Learning to self-regulate will be at the heart of Jay’s OT for the next several weeks.

For those of you not familiar with the lingo, the best way I can describe it is that it’s about balancing the body and mind so you can function without getting distracted.   It’s about getting to a point where your body is relaxed and comfortable enough so you can do real work or pay attention to what you’re supposed to be doing.

In Jays case, he gets very worked up (mentally and physically) and needs a lot of stimulation before he can calm down. 

There are tools/tricks that can help someone to self-regulate.

For example, someone may be easily distracted while sitting in a regular chair; but if they sit a large exercise ball and need to focus in part on balancing, they become more aware of the environment around them, and can now concentrate and focus on learning.
Sometimes, something as simple as a squeeze ball or rubbing a hand against a scruffy (not-shaven) face or fidgeting with embellishments on (your moms) shirt can help someone to feel regulated.
In some cases, people listen to music while they are engaged in other activities because it helps to keep them focused on the task at hand.
Our hope is that with this new intense, one-on-one therapy, Jay will be less “wild” and will be able to sit for an extended period of time (appropriate for his age) and focus on listening and learning. 
I also hope to take some of the strategies they use and implement them at home. 

 

 

Social Skills Group – Maybe? June 20, 2012

Filed under: Life on the Jay train — The B Side @ 9:09 am
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This evening we’re taking Jay for an … evaluation? introduction? trial?  I don’t know what to call it.

We’re taking him to a place in our town to see if they think he’s a good fit for a “social skills” play group.  There are a few groups that meet there at different times.  Each group has 4 or 5 children.  They learn about playing games appropriately and about sharing and taking turns and about reading people’s body language and facial expressions and all sorts of other things that will help to improve his … well … social skills.

By all accounts it’s run by a really good and highly qualified OT specialist.  I have heard nothing but good things about them from other parents as well as from Jay’s current therapists and even his neurologist.

 

I hope she thinks he will make a good addition to the group.

 

That’s all I got for today.

 

 

Food Fight – Not the kind you had in the school cafeteria where you ended up with spaghetti in your hair December 14, 2011

Filed under: Life on the Jay train — The B Side @ 11:30 am
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This week has been filled with meetings and evaluations.  One evaluation was at a private clinic for OT services.  By now you know that I’m determined to get Jay all the services that he needs that we can get for free or that we can afford with our insurance.  It’s the same place that he currently gets his speech therapy.  Not surprisingly he was approved so we’ll be starting him with the extra OT soon.   (Yay!)

They will work on fine motor skills like stringing beads and using scissors etc.  In addition, they want to work on things like correct pencil grip, writing and coloring but we will 1st need to establish a dominant hand.  So far we’ve been unable to determine if he’s a lefty or a righty.  He tends to go back and forth between the 2.  He does favour his left leg when going up stairs and my Mom and 1 of my sisters are lefties so that’s somewhere in his blood I guess. 

What we didn’t notice before that the evaluator pointed out is that he takes hold of an object or kicks a ball based on which of his sides it’s closer to.  For example, if you are standing on his right side and give him something he will take it with his right hand.  Or if you place a crayon down on the table to the left of him he will pick it up with his left hand and scribble with that same hand.  Get it?  Cool. 

 

We also talked with the evaluator about our concerns over his eating.  Or NOT eating.  It has become a real issue.  He seems to be healthy and he seems to have energy and he seems to be learning but he needs and I need him to eat.  He was always picky but it has really gotten out of control now.  It’s way beyond … “Oh he’ll be fine.  My son was a picky eater too and now he eats everything” … Yeah, thanks for those words to all the people who thought that would help but my child will only ingest cheese doodles (his favourite), pretzels (sometimes), raisins, cereal bars (Kellogg’s brand) and Rainbow Trix cereal.  Oh and now candy canes.  I’m not kidding.  That’s it.  He doesn’t even drink water.  He’ll only drink fruit juice and strawberry milk.   

We’ve tried every trick in the book but his stubbornness (sensory issues) wins out every time and I’m left holding the failure bag.  It feels like the ultimate failure.  Provide food and safety for my children.  That’s my job.  Everything else is the icing and cherries on top. 

The OT evaluator suggested that we make an appointment with yet another hospital nearby that specializes in working with children who have eating disorders/issues.  The term eating disorder sounds scary as hell.  After all we’ve already gone through, I don’t know why going to the hospitals website and filling out their application was so particularly difficult.  But it was.  It hit me right in my heart of hearts. 

 

My son has autism.  OK.  This journey will be challenging.  OK.  I get it.  You win some and you lose some in this mess of a life we have.  We don’t worry about him running away/getting lost more than any other child.  We don’t worry about him physically hurting himself or other people.   We don’t have to resist our urges to hug him or play with him or engage him in any way. We have blessings galore!  So am I being greedy?  Is it really too much to ask that my son not mal-nourish himself to death???