Friday, September 6, 2013

...buzzing bugs and grieving...

Today has been a better day.

We had an awesome therapy session.  It was the first one I had been able to attend in awhile.  I think we are on the right track {as long as I can handle the office staff...they aren't the most pleasant...yes, I am talking to YOU St. Louis Behavioral Medicine Institute}

Little Man's session started about ways we can work on dealing with his issue with loud noises...the lawn mower, the vacuum, etc. {I didn't mention to his therapist that he freaks out at the sound of the vacuum because it is rarely used!}  I did let her know that he doesn't have much of an issue with loud noises, because we have hired a lawn service to cut the lawn every other week {mainly because of Big Daddy's foot, and my schedule} BUT he is having an issue with bugs.


We spent forty minutes of our fifty-minute session discussing bugs.  The kind that "buzz".

We often have joked that Little Man can hear a fly before it enters the room.

The funny thing is, that it is true.

His therapist has a white board hanging in her office.  He has always loved writing/drawing on it.  They were discussing what he could do if he heard/saw a buzzing bug.  He asked if he could draw it out.

Of course, she let him.

His drawing was all-telling.  He drew his room.  His door, his bed, his TV and him.  All in "normal" perspective for a drawing.

Then he drew the bug.

It was huge.  As big as the room.

At first I thought he was being goofy, then it hit me.

This is what the bug looks/sounds like to him.

He is terrified of this bug {I will admit that I don't like bugs, but he is extreme} and it is larger than life to him.

It made me realize that so many things {to him} are larger than life.  When we say a week is a long time, it truly is.  He sometimes has a hard time remembering his goals at 2pm when we have a 9am appointment.

This is why he struggles. 

He has a hard time remembering what is important and what can be left alone.  He has a hard time gauging time and space.

In the last five minutes, I was able to talk to his therapist about some recent goings on.  Some goals that Role Model mentioned just that morning.  She thought the ideas that Role Model and I {mainly Role Model, I have to give him mad props} came up with were excellent, and she can't wait to hear how it goes when they are implemented. As Little Man was walking out, I mentioned to her that he ADORES Role Model and he really "lost" him this year, and I had a feeling that is why we were seeing the change in behavior. 

She said, "of course there is a change in his behavior.  He is grieving."

Grieving.  I teared up.

Of course.  Little Man feels like he lost his best friend.  He feels abandoned.

What is a little fly buzzing around to me happens to be an ugly, loud, nasty, gross, huge nest full of angry Horse Flies as big as his head to Little Man.

That spoke to me in volumes.  I have to let it all sink in.  My Little Man is dealing with is emotions, and when you are nine years old losing your best friend is the worst feeling in the world.

I am going to think and pray {yes, pray} this weekend.

{love to all}

Thursday, September 5, 2013

...falling through the cracks...

The day that I have been dreading has finally come.

Little Man has fallen through the cracks.

This is something that Big Daddy and I have discussed since the beginning.

Me: "We NEED to take the services they are offering him, even if you don't think he NEEDS them.  Do you want him to fall through the cracks?"

Usually Big Daddy would agree.  You see, his youngest brother {at the time} kind of fell through the cracks.  From what I understand, he might not have been Autistic, but he had a hard time with school.  He wasn't smart, but he wasn't dumb.

He kind of just fell through the cracks.

Believe me, Little Man is not struggling academically.  He is so, so, SO smart...but right now he is an eight nine year old boy.  He is getting lazy with his work.  I have to "get on him" to practice his spelling words or his math problems.  He almost obsesses {anxiety speaking loud and clear, here} over his math problems.  He is very smart.  I get that.

He is falling through the cracks socially. 

He can handle the structure and routine of the school day.

He struggles at the unstructured times of the day, "specials" {PE, art and music} recess and lunch.

And before/after school.

Little Man is supposed to have the services of a one-on-one para {assistant?} for before/after school.  He is supposed to have the support of an adult to help him work through his social situations.  He is supposed to have someone there who he can go to if he needs help with something, if he needs to walk away because something is overwhelming...the list can go on and on and on.

Because the before/after school program is not-for-profit, and really has nothing much to do with the school itself, the school district has applied {and received} a grant from the Developmental Disabilities Resource Board {DDRB} here in Missouri.  They are paying to make sure that Little Man gets what he needs to be successful.  They help pay for private swim lessons, since he doesn't do well in a group.  They help pay for caregivers so Big Daddy and I can have a night out every once in awhile.  They offer social skills classes {though we have been on a waitlist for those since kindergarten} and additional therapies {equine therapy!!!}  They are a blessing that I am incredibly grateful for.

I have filled out mountains of paperwork.  I have sat in on meetings.  I have done everything that needs to be done to make sure that Little Man gets the support he needs.

He isn't getting it.

It all started last year.  The before/after school program said that, according to his IEP, Little Man has "access to a para" during the school day, so his services for the program needed to reflect that.

Oookkkaaayyy. {as Little Man would say}  That is all well and good.  NO, he doesn't need a para every single minute of the day.  He walks, he talks, he feeds himself, he toilets himself.  He functions as a regular eight nine year old boy for the most part.  He would never, EVER in a million years hurt another child or an adult {though his refusal to get off a swing in kindergarten caused a para to tumble and sprain her ankle}  He is more apt to hurt HIMSELF than someone else.  Lately, he has taken to hitting walls and tables. 

I am afraid he is going to break his hand.

They need to read the IEP carefully.

He has FULL access to a para during unstructured times {specials, lunch, recess}.

A little backstory {since I am all over the place as it is}

Little Man had a para for the before/after school in kindergarten and first grade.  They get along beautifully.  We joked that he was more like a big brother or uncle to Little Man.  It was a perfect arrangement.  He was a male role model that Little Man needed while Big Daddy works. 

Little Man was making friends, he was achieving socially.  It was just about as perfect as it could get.

Then "budget cuts" happened.

Last year, they paired Little Man {then a second grader} with a third grade boy with the same diagnosis, who lost his para because her position was eliminated.

They could not be more polar opposite.

I held back, and let it ride its course.  I watched these two fight and make up like brothers.  They had a true love/hate relationship.  I was constantly told that there was no choice but to pair these two because of the budget.  I had to scratch my head on this one.  If Little Man qualified for a para from the DDRB {who was paying for the para} and his 'New Friend' qualified for a para from the DDRB {who was paying for HIS para} why is the budget even an issue???  There should be enough pay for two paras, right???

I bit my tongue when these two were paired with ANOTHER student during breaks and days off.  A third student, a GIRL.  This girl did NOT get along with 'New Friend'.  She got along all right with Little Man.  I figured, This Girl doesn't come to the before/after school program on a regular basis, so maybe she didn't have funding for a para.  I settled for that.  {I later learned that I was incorrect, that 'This Girl' DID qualify for a para from the DDRB}

Little Man's behavior and anger kept getting worse.  His anxiety was out of control.  We kept plugging along at therapy week after week looking for answers, when most of them were right in front of me.

He was losing his best friend {'Role Model'}.  He didn't like sharing 'Role Model'.  He wanted 'Role Model' all to himself.

This summer, the transition from second to third grade was awful.  Little Man was getting in more and more trouble.  He was getting along with 'New Friend' all right, and 'This Girl' didn't attend summer session, except for a few days before school started. 

Then the first day of school happened.

The before/after school program got a new student.  A non-verbal Autistic fifth grade boy.  This child qualified for a para from the DDRB.  The problem is, the before/after school program didn't hire anyone for him.

Little Man and 'New Friend' fell through the cracks.

'New Friend's parents were okay with it.  He is getting older, and better able to handle social situations.  They don't fear for his safety.  The DDRB is still paying for his para, so he still has "access" to 'Role Model'.  Little Man, 'New Friend' and 'Fifth Grader' were all placed in a "new" group for third/fourth/fifth graders with a male facilitator with the understanding that 'Role Model' was to help Fifth Grader, and the facilitator was to "monitor" Little Man and 'New Friend' {along with 23 other children}

Yep, Little Man OFFICIALLY fell through the cracks.

He is getting into WORSE trouble a month into the new school year.  He is running from adults, being disrespectful, hitting things, throwing fits...worst of all, he is being BULLIED by a fourth grader who can't be in another group {because he has terrorized fourth grade girls}

Little Man is so sweet and generous, he told me "Mom, I know that 'Fifth Grader' needs 'Role Model' more than I do.  He can have 'Role Model' until he finished fifth grade, then I get 'Role Model' back".

No, Little Man.  Apparently you are becoming "too dependent" on 'Role Model'.  Apparently in third grade, you are "getting ready for middle school". {???WTF???}  You won't have 'Role Model' back.  'Fifth Grader' needs him more and the budget won't let them hire anyone for you.

So, Little Man will continue to throw fits, he will continue to be disrespectful to adults, he will continue to be bullied by out-of-control fourth graders.  Little Man will spend his afternoons writing sentences {as punishment} instead of playing.  Little Man will not make friends, because who wants to be friends with the kid that gets in trouble all of the time?  He will continue to hit walls and tables.  He might even hurt himself.

But he won't have the support that he needs.

I am exhausted.  I am at my wits end.  I am between a rock and a hard place.  I work for the school district {in a position that I love}  I am not sure how badly I can rock the boat without losing my job.

My question can "budget cuts" be an issue if the DDRB is paying to provide paras for THREE {four, really} CHILDREN when only one is truly getting the services???

The DDRB pays for their grants from taxpayer money {from my understanding}.  The county we live in might be interested to know that their money is being abused misused.  I just don't get it.

I don't know how much longer I can stay quiet.  Yes, I love my job.  Yes, I NEED my job.

But I am Little Man's Mommy first.

I need to make sure he is protected and taken care of.  He isn't getting what he needs right now.

I need to figure all of this out.

{love to all}