Froufy’s Paraprofessional

When you have a child that has an IEP that requires a paraprofessional to be in the classroom, and that paraprofessional decides to retire, it would be nice if said para gave more than a day’s notice before she stops working.  It would also be nice to get notification that the para your child has had since the beginning of the school year won’t be with her any longer.  It would also be nice to know how the search for a new para is going a month after the old para essentially up and quit.

I found out by accident.  I should have found out at the PPT I had a month ago.  Well, more than a month ago now.

On a related note, it took my daughter a month to tell me that having a different paraprofessional every day (substitute paras) for the past more-than-a-month is upsetting is stressful to her.  She cried when she told me Saturday night.  If I take it from her she still has a different substitute para nearly every day and not a permanent one yet.  This is a child who relies very, very heavily on routine and sameness in the classroom.  I had noticed that her behaviors at home were acting out and anxious, and she couldn’t tell me why.  It was dumb luck when I told her that I was talking about about her “para situation” to a neighbor and the flood gates opened.  She finally had words to tell me why school was upsetting her.

It’s time to call the teacher and see what the updates are.  I need something concrete to tell Frou Frou.

 

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IEP, Gnawing, Worrying, Aha!

This is what I do when I have a moment to breathe.  I worry myself with things I may have missed during PPT’s and 504’s and things I could have or should have said to the kids’ teachers at past meetings and dates and events.  I worry about things I should have brought up at past doctor appointments or need to bring up at their next doctor appointments.

I go through this exhaustive check list in my head over what ought to be done in the months coming up based on current need, future need, and what we did in prior years.

When we had Gracie’s PPT meeting back in January, I left feeling as if I had forgotten something important.  It kept gnawing at me but it wouldn’t identify itself.  What a pain in the ass.  I left it alone figuring that if it were important it would pop into my head or if it were one of my worries-just-to-worry, then it would dissipate and never come back up.  But it did keep gnawing at me… that feeling that we missed something in the PPT.

Luckily it wasn’t something immediate.

I was going over that checklist in my head during the background of my day, and it struck me that we hadn’t officially brought up having summer session aka summer school added to her IEP as we do every year.  If it’s part of her IEP then we don’t have to pay the $300-600 fee to the town.  Gracie gets her continuation of special services throughout six weeks during the summer.  She gets to catch up on anything she missed during the previous school year and maintain what she’s learned.

Where the typical child loses about three months of the previous school year during their summer break, a child like my daughter loses twice that amount.  Summer session is imperative for her so that she can stay caught up and what she’s learned can be reinforced.

I dropped a quick e-mail to her team this morning and it’s a good thing I did.  This way we can get the paperwork started to change her IEP and make sure I get the paperwork granting permission/making the request for her to be in summer session.  Now is the time to get that ball rolling.  It will be especially important this year since our town is rearranging schools and my daughter will be attending a different elementary school next year.

And people tell me that worrying isn’t beneficial.  Bah.

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Autism Always Seems Bound To Guilt

There has been discussion all over the ‘net and on discussion boards about what naturo-paths supposedly have suspected for a while:  That there may be a link between Moms who have Fibromyalgia and/or Chronic Fatigue Syndrome (as well as other immune-suppressing diseases such as Lyme’s Disease) and/or gastrointestinal problems and their children with Autism.

A couple of months ago I attended an autism support group meeting that had a licensed “naturalistic holistic homeopathic” doctor who was trained as an MD and then as a naturo-path and homeopath.  During this meeting, it was discussed how of course no one knows what causes Autism Spectrum Disorder but that there are many various things showing strong links.  The strongest evidence has been genetic, of course, but during this meeting other factors were touched on as well.

There have been links between mothers that have digestive issues, immunosuppressant diseases such as Fibromyalgia, other chronic illnesses that include pain and fatigue, have been on long-term birth control (because birth control pills affect gut flora), as well as neurological disorders and having higher rates of children with Autism Spectrum Disorder.  Mothers who have Depressive and Major Depressive Disorders are also at a higher risk of having children with Autism.  I had heard these things before, but this doct… naturopath believed it very firmly.

So I’ve thought about all of this and the details of the discussion that came up surrounding this stuff.  There’s been some guilt, I admit, because mom’s feel guilty about everything and it’s ingrained in us. 

If any of this is true then that makes Sweet Girl’s ASD my “fault.”  Fibromyalgia.  Gastrointestinal issues related to the fibro showing up as symptoms of Diverticulitis.  Depression and Generalized Anxiety Disorder.  Some serious food allergies and contact allergies including reactive asthma.  Having been on the pill, said to mess around further with gut health… just like antibiotics do, which I was on and messed with the pill which is when I got pregnant with Gracie.  I feel like… how can I not feel guilt?

Obviously I had no clue.  I didn’t even know what Autism was before I had children.  It was some vague neurological disorder I had heard about but didn’t know what it “looked like” nor anything about it.  All I knew was that Rain Man was a poor representation of it, and Special Education teachers often taught people with Autism Spectrum Disorder.  I knew it could be “severe” but I had no idea what that meant.  I had no idea what to look for when I had kids when it came to ASD.

Then the internet happened.  Online communities.  Birth clubs.  Mothers in the birth clubs struggling to figure out what was going on with their children and then announcing fearful diagnoses.  Then another birth club with my second child and it started again, only this time I noticed the same symptoms in my daughter as she got older.  This? This was ASD? No… I don’t know ASD.  But yes.

And of course the fear and fear-mongering about vaccinations because of that grand hoaxer, Andrew Wakefield.  I always thought, “I have nothing to feel guilty about with vaccines.  She showed signs of ASD long before she ever had a single vaccination.  The signs never got worse with vaccinations but with emotional traumas.”  There are qualities in her that are signs of ASD that simply character traits and personality traits in family members.  Everything points to genetics.  And yet.

And yet the circumstances also seem to line up with being ripe for “causing” her Autism.  So again, how can I not feel some guilt? Then I feel angry for feeling guilty.  Because if the odds were stacked against my kids (according to Autism Speaks and naturopaths) because of circumstances about my health then why don’t all of my kids have ASD?

I don’t know then if guilt is the right feeling, but there’s definitely some conflict.  Maybe it’s guilt with some resentment for feeling that way.  But it seems that when it comes to Autism and looking for a cause, there’s the insinuation that there’s fault.  Fault of one of the parents, mainly the mother.  And when there’s fault there’s inherently going to be guilt.  Autism is a guilt-ridden disorder AND IT SHOULDN’T BE. 

There’s simply no way out of it.  Even if it’s based purely on genetics, which I believe my daughter’s ASD to be, well, where did her genes come from? Even if it’s a joint effort of genes from both sides of the family, I chose her daddy.  See? Guilt.

When it comes to this disorder, you really have to make the decision to leave guilt out of it.  Get angry, move on as a parent because its not about me, get motivated, get inspired, but put away the guilt.  The guilt doesn’t do anything besides detract from what’s important.  Why would I want to detract from my daughter? She’s really perfect.

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Not MY Special Snowflakes

I have a worry.  I’m a worrier, so that shouldn’t be a shocking bulletin or anything.  But it’s starting to cause me some anxiety and that means the worry is turning into a Very Big Deal.  Maybe it’s only a big deal in my head, which is entirely possible, but when you’re a mother to a child with Autism and that child has serious problems with transitions and people she doesn’t know and takes the better part of a year to get used to new environments, you learn to listen to your instincts.  You learn how to be an advocate.

Sometimes you have to think these things through and analyze them.  I keep coming back to this and every time I think about it, I’m more bothered and feel a bit more anxiety.  That’s my clue that I shouldn’t let this go.  I’m trying not to over-analyze it but… well, you tell me.

My town is re-districting the elementary schools.  As it stands now and for the 2011/2012 school year the school districts will remain the same.  The system has an Early Childhood Learning Center that houses all the kindergartens and special ed preschoolers.  It’s been that way for years.  In order to make sure that every child gets to attend, they have half day kindergarten.  Half in the morning, half in the afternoon.  First through fifth grade are divided into three districts plus a few private Christian schools and a “regular” private school.  Then all the public school kids meet up again in the public middle school.

That means that Gracie will be in 3rd grade in OE and Anna will be in 1st grade in OE for this year as they normally would.  However, the plan to re-district means that they want to move all the kindergartens into full day classes into their elementary schools.  To make room, my girls would have to move to a sub-par school.  They’re now in the best of the elementary schools in town (which is why we chose this house when we moved).

More importantly, Gracie is already having a hard time with her older sister moving to middle school.  She’s upset that they won’t be sharing a bus together any more.  She won’t transition well to a brand new school with a brand new team of paras, teachers, classmates, school layout, Planning and Placement Team, therapists… basically the entire stable system she has in place now will not exist.  Her IEP will move over with her, but our relationships with the PPT and everyone else will not.  I’m heavily debating requesting having her stay in her current school as part of her IEP.  Would you do that? The problem would then be my daughter Anna, who is a huge support system for her big sister.  Anna, at 6 1/2 years old, is a care taker of her big sister.  And Gracie will need that support.  She won’t do well if she’s separated.  Her sensory issues are worse when she’s anxious, especially when she starts the day with anxiety.  Her ADD is worse as well.  She won’t eat, she becomes more obstinate and stubborn, and much less cooperative.  She sleeps poorly and cries more.  She talks less.  She interacts less.

Is it too early to worry? When do I address this? Do I put more trust in her that she can handle a change like this? I also have to consider that the school the girls would be moving to doesn’t have nearly the good reputation that their current school has.  In fact, it has a poor reputation.  I can’t help but worry that her PPT and IEP would tank and all the progress she’s made will be for nothing.  I don’t want her to regress.  I would rather pack up and move.

Melodramatic? Maybe? Too early to worry? Too early to take action? Am I coming off as too-special-snow-flakey?

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