Autism's Dirty Word

Sam has developed some aggression recently. Aggression is a word many of us hesitate to use in reference to our children.  Having it recorded as one of your child's "issues" can close some doors since not every program is equipped to deal with an aggressive child.  Also, especially with a kid like Sam, "aggressive" just doesn't seem to fit what I am trying to say.  To me, aggressive suggests that the person intends to cause hurt or harm to another.  It suggests more awareness than Sam has.  But, for lack of a better way to explain it, Sam has been aggressive. 

His episodes tend to be either in response to being told "no" or part of an OCD fit.  When he is told "no" to something he really wants (but just can't have) and he is in one of those moods, he throws thing hard at that ceiling, he hits me with the base of his palm, and he scratches.  If he is on the floor he goes for my legs and rakes his nails down.  If he is standing or on a couch he goes for my arm.  The picture shows the results of one morning tantrum.  The OCD fits are something new - he starts to scream and cry because the curtains are crooked, the pillows aren't right, the shoes are messed up - even if he/we fix what he wants it doesn't matter because he will just fixature on something else.  Sometimes he lashes out in those moments.  I cannot lift him up to his room to separate him from everyone when he gets like this.  I stay near him even though it means getting scratched because he is happy to go for the girls if I am not close enough. 

These episodes are not a constant thing.  They seem to come in waves and they are worse when he doesn't have school and his day is less "on the go".  So we are doing our best to keep him busy.

Broken Glass

Sam likes to drop things.  And throw things.  Pretty much all the time.  Usually he fixates on hard plastic objects or cardboard boxes but sometimes he selects dangerous things. Sam decided to punctuate his morning today by smashing one of Maya's snowglobes on the living room floor whiloe I made him breakfast.  Yes, I realize that the snowglobe should not have been where he could get it but at this point there are very few places he can't reach. 

Sam has a pretty intensive behavior plan for throwing/dropping at school and we are starting to bring it home during his home program sessions.  I am thinking about scanning it and posting it in case anyone wants to learn about behavior plans. 

A Nice Doctor

I met with a very nice doctor today.  I almost didn't go.  I got a call on Monday reminding me that Sam had an appointment with the developmental pediatrician.  I totally forgot about it and my first thought was to cancel it.  THere is really no role for a developmental ped. at this stage of the game.  We don't need a diagnosis and he doesn't handle meds.  It is one of those appointments that you have to make about 8 months in advance so about 8 months ago someone probably said to me, have you followed up with the developmental pediatrician?  and it seemed like a good idea at the time. 

I wanted to cancel because dragging a baby and Sam (Maya had camp) to one of the worst areas  (the hospital is surrounded by "gentleman's clubs") just made me want to vomit.  But I thought about it for a while and realized that if it went terribly, I just wouldn't go back.  If it went well I might leave with some suggestions. 

Sam was a complete nut, throwing things that whole time. Hannah was a doll.  The doctor was very kind.  He didn't offer any new information but he did give me some suggestions of psychiatrists who work with severely disabled kids.  None of them take my insurance, of course but I will at least call to find out their fees. 

And he said he was sorry things turned out this way.  He was the one who originally said he thought would turn out to be on the higher functioning end.  He didn't say it in a condescending way.  It was sincere and well, just kind.

He even called me when I got home because he thought of another specialist in another state I might want to call - also doesn't take my insurance but that fact that he continued to think about Sam was very nice. 

Losing teeth and losing faith in doctors

Sam lost another tooth yesterday.  I only found out becasue I happened to look in his mouth at the right angle.  He had no idea.  Or if he did, held no significance for him.  So far this makes 3 teeth out.  THe first he got a bit upset about, the second he must have swalloed in his sleep and then this one must have come out during the day.  I am sad that this developmental period means nothing to him but I am happy that it is not overly upsetting to him.  I suppose it could be worse.

After weekly follow up calls to the meurologist, I finally got a call back about 2 months after I sent the video of Sam foaming at the mouth.  The doctor still hadn't been able to open the video and said we woudl just talk about it at Sam's next appointment - in August.    AUGUST.  So he hasn't seen the video and has no idea if it is something serious and he says don't worry about it we will talk in August.  I would love to find a new neurologist but I really don't think there are any fantastic doctors out there for Autism.  I have list from various school with "parent recommendations" but this guy is on one of those lists so I don't know how much help they will be. 

IEP Season

The school year is winding down and so IEP season is in full swing as we all plan for next year.  Sam's meeting went well.  It seems that instead of dropping items on the floor hundreds of times a day he is only doing it tens of times a day.  Woo Hoo! (insert sarcastic eye roll) Without any debate, the district consented to continue Sam's after school home program without any breaks in the summer and they added additional hours in August.  He is set to continue at his current public school program- which is a good program-next year.  Sounds good right?  In the moment I went with it and signed the IEP.  I know how lucky we are to live in an area where special education services are provided at this level. 

but. . . . . I met with the special education director of the district in which I work.  We discussed Sam's (lack of) progress and behavioral issues.  SHe told me that if he were in her district she would most definitely look for a private school program for him.  She helped me clearly articulate why his current program is not the most appropriate option for him.  She confirmed one of my big concerns - Sam's current program keeps kids through age 14.  After that is is assumed they will go to life skill or job training programs.  Sam is not on that path.  Unless he has major congnitive gains, he will not fit into a program like that.  At 14 he is likely to be 6 feet tall and very strong.  The chances that we will be able to get him into a good private school program at that point will be very slim.  THe chances are better while he is younger.  She also told me that around here, it isn't much cheaper to send kids like Sam to public programs.  SHe urged me to push for it now.

so. . .  I left a message for my case manager last night (you know, just to make sure she has a great holiday weekend).  I will follow up with a letter today. 

Let the games begin.

Maya is 4

SO instead of feeling sorry for myself (and Maya) for not knowing anyone to invite to her party I decided to just send invitations home with all the girls in her class.  I figured there are only about 6 of them and so even if they all said yes it wouldn't bee too big of a gathering.  Four girls came plus two others we know from outside school.  Maya had a blast and Sam managed to only steal a few water bottles and throw them over the fence. 

Seven!

Yesterday Sam turned seven!  I can't believe I have been a mother for seven years.  It was a regular day - everyone had school/work.  I gave Sam a musical toy as his gift.  He likes these Baby Einstein toys which look like stuffed animals with pictures of instruments on their paws. You press the paws and it plays a tune.  Hannah got the turtle for Christmas but Sam quickly claimed it and began holding in right up to his ear and playing it again and again and again. .  I found out they make the same toy in different animals so I got him the Panda (and actually the lion a few weeks back as well) to be extra.  We had ice cream cake after dinner and called it a day. 

It was, as his birthdays always are, bittersweet.  I am happy that we are in a better phase with him. He is happier so fewer tantrums, and we have a decent therapy schedule for him.  The fact that he is getting older is hard because chances of his gaining clear communication and cognition are getting slimmer and slimmer.  

But we keep trying!