On my To Be Reviewed Stack!

On My To Be Reviewed Pile!

Thursday, May 26, 2011

Validation

We went to see a different doctor today to talk about Jamie. There's no doubt in her mind that Jamie has Aspergers.

She says there's thinking in the world of psychology that says a kid can't be autistic AND ADHD, but it's phooey, and she believes he has the hyperactivity/ADHD as well. She thinks we should keep going with his patch, since it is clinically known to help kids like Jamie, and since the Autism teacher has noticed some changes in Jamie since he started with the patch.

She agrees with his current doctor about his diagnosis and how he's been treating Jamie, and says we should keep going with him. She has offered to be our advocate with the school system if we need her. She thinks it would be good if we find a Behavioral Psychologist closer to here, because we may have battles with the school and will need help advocating for him.

She doesn't think doing a full battery of tests right now would be a good idea, because he doesn't have the attention span, and we'd spend alot of money for tests that are "their best guess." She thinks in a year or two, we need to do it, to get the IQ testing and learn the full cognitive delays he may have.

She thinks that

1. He needs to see a professional pediatric occupational therapist for an assessment and for Sensory Integration. The only thing the school is judging him on is if he can hold a pencil, and there are so many more facets to it than that. She thinks if we take him for Sensory Integration 1 on 1 work, it could help with his extreme sensitivities to sound, touch, etc, and make his life easier.

2. She also thinks he needs a professional pediatric speech assessment. That once again, the school is just skimming the surface. Yes, he understands the ins and outs of conversation, but he doesn't understand the subleties, the deeper meanings in conversations.


The aggression isn't aggression in general. It's aggression based on a perceived wrong. Someone isn't following the rules (the school rules or his own self-thought rules), someone slighted him (his own feeling or reality), and this is his way of acting out. If he can get away, he can, but if he can't or it overwhelms him too quickly, the fight or flight kicks in and he fights. As he gets older, this will calm down some, but again she thinks having an aide to be there to quickly try to redirect him would help.

The big problem we're dealing with with the school is that if he had a diagnosis of Autism, an IQ of 70 and was barely communicative, they'd treat him differently. Because he is so darn smart and talkative, and carries on adult conversations, they forget about the Autism part, they expect more out of him than they would other Autistic children.

She thinks he is an amazingly smart child and probably does have a high IQ, but right now she wouldn't be able to test it. She did say if they did the testing, he'd rank very low in cognitive skills.

I think the day went well. She validated his current doctor's diagnosis, and gave us more complete info, some things she thinks we should try to make Jamie's life easier, and some things we need to get in his IEP. And if we need her, she will come help us fight the school for an individual aide for him. She's also going to try to ask around to see if she can find a Sensory Integration specialist around a closer area that we could try for him, as she thinks that's the biggest thing he needs help with .

Tuesday, May 24, 2011

Being a mother is the hardest job in the world

People always say this.

Before I had the boys, I thought it was a load of bullshit.

But it's true. Being a mother means that you hold a life in your hands.

For 9 months, you cradle that life inside you. You eat properly, take care of yourself like you've never bothered to take care of yourself before, because you know you're carrying a little life inside you.

When your child is born, you spend hours staring at their face, making sure they're breathing, making sure they eat, that they're growing, they're hitting their milestones, that they're happy.

You spend your time imaging what life lies ahead for them. How they'll be when they learn to walk, what their first words will be, their first day of kindergarten, graduating high school, graduating college, getting married, having their own child...

But through all that, you take care of them. They fall down and scrape their knee, you want to take the pain away while you hold a crying child in your arms. They have problems making friends, your heart breaks, wishing you could make it better for them.

Now add to that a child with autism. A child who doesn't say he loves you. Who doesn't want you to "kiss his skin" at night. A child who struggles to get through the day. A child who wants to make friends and can't understand why other kids don't want to play with him. A child who is anxious, who is overwhelmed by lights and sounds, emotions, who teeters on the edge of control.

Is your life difficult yet?

Add to that the fact you have to work.

Dreading every time your cell phone rings that he's "gone off" and is in trouble. That he's about to be kicked out of preschool, out of daycare, suspended from school. That he's only six.

Now add on top of that that the place you work knows your son is autistic. The sole purpose of the organization is to work with adults with special needs (including autism), who knows the behavioral challenges, who strive to make the people they serve live as normal a life as possible. And they can't understand that you need to take off for doctor appts for your son. That he's on medications no child should be on, and has to be monitored, that he may go off, and I may need to rush home to take care of him. Who has now told me that I need to decide between my autistic child, and my job. That if I take off any more time (of which I still have alot), I will be told I have 90 days to find a new job. Oh, and you know that family vacation you've had planned since January, that we approved yoru time off for....you might want to rethink doing that. Who cares nothing of the hours of overtime I put in for Board Meetings, it's just expected of me. But begrudges me a few hours a couple times a month to care for my son. Who now wants me to put off getting a severely infected tooth fixed for god knows how long because don't all dentists stay open 24 hours to accommodate jerkish bosses?

I get my work done, I don't have piles of work left sitting around that I don't do. I bust my ass to get it all done. To take care of my job, my responsibilities, AND MY SON!

How can you tell a mother, any mother, and especially a mother of an autistic child that their child doesn't matter. That they can't use time they have accrued, time given by the company to the employee, to attend medical appointments, to attend IEP meetings at the school, to take care of him.

I am trying my best. I am working myself into a mental and physical deficit trying to keep up with everything, make everyone happy.

I can't take it anymore. My child is more important than your job. I'm about to the point of filing for bankruptcy so I can work part-time and care for my son. Through all the shit work is putting me through right now.... I'm still sitting here worrying about my son and how his day will go tomorrow. If he'll have problems, and how THAT's more important than my job.
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