Sunday, November 15, 2009

Having a Moment (Autism, not Asthma)

I'm having a rough time.

I know my posts are generally asthma-related, but I actually have two boys who are on the autism spectrum, too.

#1 son, B, has Aspergers Syndrome. He's totally mainstreamed in school and, if anything, his particularly brand of autism makes him better-behaved than average kids. I think he honestly believes the world will burst into a fiery ball if he breaks a single rule. He definitely has anxieties and feels the stress of everyday life more than most, but he's a great kid.

Oz, son #2 is a completely typical 5 year old - smart, gorgeous, snarky. He's great.

#3 son, Ig, who will be 4 in December, was recently diagnosed PDD-NOS - that is "Pervasive Developmental Disorder, Not Otherwise Specified." The "NOS" part typically means there's no delay in speech development.

Although Aspergers is frequently catagorized as a PDD-NOS diagnosis, I can tell you that Ig and B are unbelievably dissimilar. Where B and I were having full conversations (about snakes, usually) by the time he was three and a half, Ig can't carry a conversation at all. He has the vocabulary. What he lacks are the semantic and pragmatic language skills. He just doesn't "get" conversation at all.

A little clarification on that "semantic pragmatic language disorder":

Semantic-Pragmatic Disordered children have many more problems than just speaking and understanding words, so it is called a communication disorder rather than a language disorder. We think that the difficulty for children with S.P.D. may be in the way they process information. Children with S.P.D. find it more difficult to extract the central meaning or the saliency of an event. They tend to focus on detail instead; for example the sort of child who finds the duck hidden in the picture but fails to grasp the situation or story in the picture or the child who points out the spot on your face before saying 'hello'. "
So, vocabulary is there, language skills aren't. But there are so many more problems than that.

Every day is a struggle for Ig. I don't think he understands that there is a world around him that functions independently of him and without regard for what he wants or needs. This includes time, which has no meaning for him. If he wants something, he wants it now, and there's no explaining that he has to wait for it, or that the zoo is closed, or that we have to leave for school right this instant.

It's hard enough that he doesn't get these things in the first place, but then you can't even discuss them to attempt to reason with him. Conversation is impossible, although I do believe he understands quite a bit more than we give him credit for.

And when he doesn't get what he wants, he tantrums. These used be typical toddler tantrums - screaming, crying, kicking, hitting. Now they're just small, random acts of violence - hitting or biting one of his brothers, throwing a toy, kicking the dishwasher, whipping me in the back of the legs with his security blanket. If we put him "time out" for one of these offenses....THEN we get to see a good, old fashioned temper tantrum.

You can understand then, maybe, why I've kind of given up. In the past, I was the mom who removed her child from the restaurant at the first wail. My kids go to time out for talking back. They don't get dessert if they don't finish dinner. I'm an old fashioned parent in so many ways. But Ig has just worn me down. I let him get away with murder because it's easier. It's SO much less work.

I realize that I can't do that, and today I resolved to stop doing that. And I know it's going to get worse before it gets better. It always does.

Ugh. I love this kid so much, and I know that he needs me so much more than my other guys do right now. Seriously, I don't think anyone's ever loved me or trusted me the way he does! But he's so tough. He can be so sweet one minute, and trying to punch me the next. He's completely unpredictable.

The most frustrating thing? I can't afford to see the behavioral therapist as much as I need to. We've made so much progress with him, but insurance doesn't cover the visits. (NJ mandated insurance coverage for autism-related therapies back in August, but it doesn't take effect until February.) I would have the guy move in with us if I could! And we live pretty comfortably - we're not millionaires or anything - but the therapies really do cost THAT much.

I'm ranting (whining?) now...too tired to make sense. I just feel so alone with this. No one in my world understands how tough it is to live with this guy, but really - after nearly four years, I've only just started to feel like he's not running the household. And I'm scared of what the future holds for him. Will he ever be able to make friends? Will he find ways other than violence to relieve his frustration? Will he have to go to special schools? Can we afford all the therapy it will take to help him lead a happy, satisfying life?

Will anyone be able to see the glimpses of the smart, beautiful, loving little boy I see?


Anonymous said...

I read your post and I have a question. I never thought about my 5 year olds behavior as anything other than a personality quirk. I don't know if this warrents going to his pediatrician or if that is the proper person to start with. Since you have 2 children with Autism I thought I would get your insight with my child.
He is very bright but has always had to do things in a certain way or it was going to lead to a major melt down. He had to have his cup lids on the correct sippy cups. On the way home he had to have his milk (bottle and then cup). We don't just give into his every whim, but it didn't seem to matter the consequences. He would have a temper tantrum. He has food aversions. This has gotten better and he now eats a larger variety of food. Currently, he must sit behind me when we are driving somewhere or else it is a major catastrophe. I know you may be thinking this child is a real brat, but we do set consistant limits and we do inforce them. It doesn't seem to matter. I will say that his behavior is better as he has gotten older, but it just seems so intense.
We have a 3 year old too. He is very stubborn, but will do what we ask without all the drama. He doesn't have to have things a certain way or the world will end. He also is better potty trained than our 5 year old.
As a mother of autistic children, does my 5 year old raise red flags to you? If you were me would you make an appointment to talk to someone about him? If you do think I should talk to someone, who should it be?
Also, he is not currently in school. He didn't turn 5 until November. I have been working with him at home.

Thank you for your time. I do know I haven't given you the whole picture. That would be like writing a book. lol These are just a few things that go on.


Aimee said...

Hi, deAnna. Thanks for your comment.

I'm no doctor, but some of it certainly sounds familiar!

As a general rule, I would say that if you have concerns talk to your doctor.

And talk to the Child Study Team or Special Education Consultant at the school your son will be attending. We've had nothing but great experiences with our Child Study Team - even before our pediatricians got on board.

As with asthma, my rule of thumb with developmental concerns is: Trust Your Instincts. If you think something's up, something probably is.

Please keep me posted and feel free to email if you need a shoulder!

Anonymous said...

Thank you for your reply. I think I will talk to his doctor about this. I mainly would like to talk to someone to better deal with discipline issues. I feel like that he doesn't quite "get it" when he is in trouble.
Sean(my 5 year old) also has asthma. We have moved to another state(military) and we have had no breathing issues here so far. It has been a nice quiet year as far as that goes.
I hope your boys are feeling better. Did you figure out what was causing your son's red eyes?