Rogers' Rollercoaster

So, yesterday we had an IEP meeting at our base school.  So..yes, our son goes to our Church school but the Church school (most the counselor from how things seem to be done) is requested more testing.  That said, I knew from the meeting at the 12.5 days into the school year that her purpose was to push him into the public school so they could deal with Bitty. 

Amazing, enough though his Teacher is becoming more comfortable with him.  It really appeared she was working with him in fear of the unexpected.  Wondering when he would meltdown or as she wrote in an email, “Since we need to use our instructional time wisely, we do not create a show down with Logan.” That is just what every Parent wants to hear.  That said, we are also told that she is afraid to discipline him. 

Thankfully, the magic of the behavior chart (giving Bitty guidelines) his RDI therapist made has been beautiful and we have gone from nothing but negative chats with the teacher with no constructive information to constructive, helpful information with a few positive notes!

In the IEP meeting the Church school counselor told the base school IEP staff that they wanted to make sure we (Andrew and I) knew of the support the base school can offer so we know how the base school can help when we would need to move him over there because the Church school can’t do what the base school can.  Funny, enough the base school states he would be in the same situation and getting the same help that the Church school is giving him. 

The school psychologist was wonderful in asking exactly what is that we (Andrew and I) are wanting out of these tests.  I had already informed the base schools Head EC Teacher that this is not a need for us but us complying the Church school’s request. 

So, the Head EC Teacher stated that it wasn’t for us it was the request of the Church school.  So, the psychologist directed the question to them. 

Then stated that some of their requests versus testing she could do.  She pointed out that the educational testing is best done in the student’s school by the school staff.   People, that Bitty is comfortable with because if we pull him into a different environment and with a stranger he more than likely will shut down and it will skew and corrupt the results.  So again, the observations they have of him in class.  That said I would request the RDI therapist be the one to offer more information due to she is a non-biased observer. 

I feel the school counselor is doing her best to push him to someone else so she can go back to not having to work as much.  Just my opinion due to other interactions with her.  For example, telling me to contact the base school for to request the reeval.  The staff at the base school tells me that is not something they do.  I go and ping my Special Needs online groups and get the actual contact person with our public schools.  I call her, she answers in 2 rings.  She asks what Church school and then easily states, OH --- --- (counselor’s name) I have worked with her before!  Here’s what you do..and she in a 5 minute phone call tells me what I need to do, asks if I have any other questions, and within two minutes of the phone call sends me the promised email.  I was floored…that said the process with the base school went much easier. 

So, I very kindly (a tad bit on sarcasm dripping there) contacted the school counselor via email with the entire support staff on the email letting her know the difficulty I had with the base school and for her to better help others in the future give her the contact person and proper route to take.  Then did also throw in the information that the contact has said she has worked with you before. 

So..yeah..I threw a low ball but as classy and business like as possible. 

If this is your job, you know the process then please give proper information.  We were thrown into a last minute invite to a meeting that we were blindsided in. 

At a next meeting the counselor stated that it was the “unexpected meeting” that caught her off guard.  We have written proof that it was a planned staff meeting and we were only invited to it 36 hours before it began.  Unexpected my booty.  But..kill them with kindness, right?!  Well..that sounds terrible..treat others the way you want to be treated.  So, we smile, thank them but do speak simple and clear to make sure nothing is misunderstood. 

Anyways, back to the good day yesterday.  J  Every negative thing the Church school staff had written and pointed out about what Bitty was doing.  The lead EC Teacher, the base school typical Kindergarten teacher and the school psychologist would say, “Well, that is a typical Kindergartener action.” “Very normal for any Kindergartener to do that.”

I also made sure I added the 2 cent detail of their requests after 12.5 days of school.  All of the base school staff said, that is too soon for any Kindergarten child to adjust! 

I REALLY appreciate all they did. 

We then went on to giving them background on Bitty as they asked and looked at prior IEP and testing.  Stating he never had any academic goals it was all behavioral.  Again they pointed out the pointlessness of education testing and that again all of his behavior things are indeed pretty typical for a Kindergartener and a child on the Spectrum.  And that the issues he is having with multi-step directions are pretty darn typical (as typical as it can be) for a child on the Spectrum and again share they would be doing what the Church school is doing and that actually the Church school may have 5 more kids in a class but they have more consistent TA help than the public school does.  The base school has a much larger setting.  5 Kindergarten classes versus 2 and shared TA’s between classes.  In our school they have TA support full up through 3^rd grade and then shared part time TA’s after that. 

The school psychologist listed testing that could be done and the quickly listed why many of the choices would offer minimal to no help with what they (Church school) are seeking.  So, truly only one thing may be beneficial however, it is forms filled out by Andrew and I and one by the teacher and depending on how we answer it may not be a score able questionnaire.

Andrew and I shared our Bitty’s story with where he started and where is he now.  We listed the gains we have seen since Kindergarten started.  We shared our concerns of the Church school’s requests and mention what is doable and what is not for us.  As in the Church school telling us he needs a small class size which at any schools that have that is $2,000 a month minimum.   

We shared all we do for him and how we work with him. 

We then get the wide eyed shock look and told that we do more than most Parents of kids on the Spectrum and they are amazed by what we do.  People tell us that a lot.  We don’t understand that. 

As a Parent isn’t our job to help our Children grow and thrive?!  That said every day passes we feel like failures.  We did not handle something as we hoped to, we did not get to do something we hope to.  We ran out of time on a promise to our kids, we ended up yelling and screaming and throwing a tantrum like the kids did.  We feel we were too critical.  The list can continue.  We are just Parents doing our job.  We are not Olympians, we are not exceeding at anything but perhaps feeling crazy.  Isn’t that one other thing all Parents do?  Feel crazy?!  We have that one in the bag. 

Crazy wonderful, crazy crazy, crazy mad, crazy concerned, crazy hopeful, crazy frustrated.  Perhaps we are just awesome at crazy.  That is about it though. 

We left the meeting with a good feeling dates in place for appointments and more meetings.  It was good meeting but I left with my chest on fire and sweating.  That all is how my body handles stress and that was after I spent 45 minutes before the meeting speed walking to try to burn off some stress. 

During the meeting while the base school staff collaborated we gave the school staff a heads up of Andrew’s work wanting him to travel but just giving him a window of next week or the week after.  That said, he had went into the meeting with the message from someone higher up to call him when Andrew has a moment.  We told them we will prep Bitty but it will change our morning routine at home and Bitty may or may not respond well.  I feel if we don’t give them a heads up it would be used against Bitty as an excuse to push him out.  Any child has a hard time if a home routine changes, Bitty just has a little bit tougher time than the average kid.  Andrew left the meeting and made his needed work calls only to be told he needs to leave in a few days, the sooner the better.    So, our crazy wonderful life continues. 

Truly it is never dull and there is always the curve, hill or dip coming out of nowhere in our rollercoaster of life. 

Perhaps we just need to learn the safety dance, yeah..maybe that will help.  

Small Glmipse of Ramblings of a Mother's Brain

Just one of those days. 

My vision has been off since my migraine yesterday that truly interfered with my vision more than “normal”. 

First migraine since summer.  I am not a fan of those.  Definitely not a stress one because this school year has been one giant massive terrible ball of stress. 

Fighting for understanding, acceptance and working with Bitty. 

I had this crazy idea that perhaps I could find a small part time job. 

I miss my paycheck and want to put some extra money away for when all hell breaks loose. 

Which is a frequent occurrence.

 However, my days have been spent with phone calls, emails, appointment scheduling, volunteering, being Therapist Mom for Bitty, and being Teacher Mom for Bitty. 

After 12.5 days of school he was forced to perform half days due to him being “tired” so a massive schedule change before he could even vaguely attempt to adjust to the 12.5 day brand new schedule change. 

I was in contact with his Therapists, his Developmental Pediatrician, meetings with his teachers and others school staff.  These were not short meetings.  During those meetings we are repeating all that is stated in his IEP. 

The IEP we handed to him just to let them look over to see if it was anything they could work with before we even got any hope of filling out an application for him.  Those needs listed are still the needs he has.  Yet it is an OLD IEP from when the public school pushes children with preschool services into kindergarten whether they are ready for kindergarten or not. 

The school wants him to have a new one.  We are working with that. 

The staff are not staying consistent and pull the fear card of concerns with him. 

We have countered with writing letters, organizing thoughts, pulling paper work, forms, data support to confirm the information we share, we beg for them to use the resources we have.  The wonderful support staff that have grown with Bitty, has offered information to share and teach about Logan’s needs, they offer their time and to always be an open point of contact to assist during difficult times.  Bitty has a new therapist who has come to observe him at school and offer input.  She has joined us on our biggest meeting yet.

 We have expressed we will give our time as extra hands if need be.  We make supports and that they can run support ideas by us for we have given it 4 years of trial and error.  Surprising enough, as Parents we are his in home teachers and therapists.  What we used can easily be paralleled into the classroom. This information is not well received. 

That in itself is massively frustrating.

We are jumping through hoops for them and will continue to do so if we must to help our Bitty.  We are only 4 years of experiences so our agility may not be great but over time if this continues we will be pretty well versed in it.    

That said, we do have two other kids who need love and attention who feel the stress that this above listed drama seeps into them. 

The home tension is thick on many days.  This does not feel wonderful to the other kids. 

They want time and attention too.  Even though they are “used to” the focus on Bitty. They still don’t understand it as none of us do.

 They see his troubles and see attention received as we work through those. 

The other two in turn reflect the images those images in grasp for time directed at them. 

They need their time and fun experiences.  They need to grow and learn with Mom and Dad too.  They too also have things that they struggle with and we must be sure to take the time to help teach how they can work through those times. 

This however is just a typical Parent’s job.

As pointed out all we do for Bitty in one of our meetings, a school support staff piped up that it is what we do only for one and there are two others not even mentioned towards that effort and time. 

It is the job we signed up for.  Our choice to be Parents. 

These battles, people call it advocacy.  That is just a pretty word to use for a battle.  At least that is what it feels like.  We are exhausted but can’t sleep.  We must plan and organize but thinking is very difficult. 

I mean the work to fight this battle is 40 hours at least, then we add we need to work with that child and our other two with homework or just a game or heck read a book. 

Do we need to pay our bills? Food in the pantry?  We have to cook, right?!  Laundry, do we need clean clothes?  Does the house need clean?!  Are our pets fed and watered??  Oh wait, time for ourselves?!  What is that!?  Our time together is planning for the next meeting.  The follow up contact regarding information given and or shared.  Getting all I’s dotted and t’s crossed. 

Oh do we have more appointments coming up, oh crap I overscheduled. 

Oh yeah! We must take care of ourselves too. 

Tired but can’t sleep, throw some time for yourself in there but your brain just won’t stop running through the “to do’s”??

Oh wait, did I email my Doctor back? 

You know I really need to. (And I did.)

My neuro-oncologist thankfully uses email for contact. 

I was supposed to update her about my headaches.  How they are doing, perhaps they are stressed related?  I need to relay appropriate information back to her so they can determine what they feel are the cause.

My MRI’s are stable but the headaches are making a comeback not just any headaches, migraines with aura changes.  That’s all. 

Remember though, I am suffer terrible reactions to migraine medications. 

The oncologist feels strongly against usage of NSAIDs post brain surgery.

Why, you ask?

If you take them post brain surgery you have an increased risk of brain hemorrhaging and she doesn’t think a gamble is worth the risk. 

The headaches and migraines feel just as they did prior to Arnie’s discovery and post his resection. 

So, we have an option, I deal with it the headaches as I have since they ever started just only use of Tylenol which does nothing other than take a slight edge off.  The “fix” to just turn off and wait for it to pass.  I can feel off for days.

Don’t worry, I don’t have anything else to do. (sarcasm)

The other option that was mentioned in July was chemo. 

Yup.

We did not share that publically at the time is was presented.

 Dr.  Desjardin described it as Arnie’s remnants are just a splinter in my brain and like a splinter can cause pain and irritation.  The extremely low dose of chemo can help soothe the irritation.  It will not attack the remnants as Arnie’s remnants are not “active” they are in a “sleeping stage.” As we were told in 2013 that his remnants will wake up one day and a new battle will begin but you never know MAYBE Arnie won’t ever wake up but that is pretty slim. 

She made sure she mentioned how odd his tests ran that she had not seen on with numbers like his before so maybe he will stay sleepy! She said all of that with the added but if we use chemo and he wakes up, the chemo has a first line advantage to kick his ass the moment he starts to even blink.

We recently agreed we are on a, “I just suck it up” agreement for pain. 

They are concerned with quality of life but I can handle pain it has yet to fully take away my quality just make some harder days. 

So, all of that weighing on us since July and the fear of Kindergarten for Bitty to the real life advocacy and acceptance road we have begun. 

As you see just those two topics takes up a lot of space and thought and just barely glances our other two Kids. 

These two topics will always be in our lives and this is how things usually will be.

We do spend time with our other two, just not as much as we like to. That said Bitty needs time to just like them! Not just therapy and work time for him. 

They all 3 need time to be “typical” kids and have ‘typical” Family time. 

Oh yeah and one of us has to be at work so we can have our home, electricity, water, food etc. On top first page of to do’s and needs. 

Oh yeah, Friends?!  We want to see them to. 

Extended Family!?  

Crap.

The list will always continue to grow and some things get dusty when they slip through the cracks. 

We must battle insurances too.  It is fun and you know what?!

This is absolutely miniscule compared to what other Families need to do or have thrown at them.

Tiny, just the start of a can of worms. 

Things truly could be even harder and if they ever turn that way we will continues to fight and move. 

Quitting is not an option, neither is pity. 

No pats on the backs. We are just working with what needs to be done for our Family.

Just knowing so many more have to work through darker woods keeps our lives in perspective.

The only purpose of this post is to spread knowledge and experience in hopes of reducing judgement and misunderstanding in Society. 

Just hoping to spread some insight and words with those who choose to have open eyes, ears and hearts. 

Perhaps, in time there will be more people like them in the world.