Words...

"Sticks and stones can break my bones but words will never hurt me."

Except that isn't true, is it?

Teachers all over have taught this difficult lesson by handing their students a piece of paper and asking them to crumple it up as much as they can.  Then they ask their students to smooth out the paper and make it look like it did before. But they cannot. Their actions have permanently altered the state of the paper.

I have been thinking about this a lot lately. I can easily recall words that have been said to me with the sole purpose of hurting my feelings. Those are tough to deal with but there are also words that are used thoughtlessly and inadvertently that are just as painful.  I know I'm not unique in this, we have all had someone say something thoughtless and at the time didn't even realize how hurtful their words were.

The one time that is most relevant to this blog was said at a time when my boys were much younger than now. We all remember this time, some of us are still going through it. The countless specialist appointments, evaluations, IEPs and meetings all while trying to learn what this new Autism diagnosis means. Admittedly, from the outside looking in, our lives looked difficult and stressful. It was at this time that a friend of ours said that they were afraid of having kids after seeing what we were going through...

I'm pretty sure if the place were quiet, you could have heard my heart shatter and fall to the floor. Even with everything going on, there was never a second that I didn't love being my boys' mom, to me they are perfect and wonderful and anyone should be lucky to have kids as awesome as mine. Now, years later, I can look back and understand that the comment came from a place of ignorance, not a misunderstanding of the diagnosis but a lack of understanding of how it feels to be a parent. It's impossible to understand the depth of love that comes from being a parent until you are one. That friend has children now and 'gets it'.

The point of this isn't to unburden my soul of one of my past pains, it is that past pain that makes me think often of words and the power they contain. In a time where close friends can so easily make a small slip and inadvertently create a painful memory that can last for years, it is important to protect ourselves and our children from those who make loud and blatant statements to discriminate, belittle, shame and hurt.

We are special needs parents, we are capable of understanding massive amounts of information from very little communication. Today that skill is more important than ever, our kids communicate exactly what they mean and we take them at face value. Sometimes people show us through their words exactly how they think and feel. There is no point in ignoring or dismissing what someone is blatantly telling you to your face. You have heard the words, our kids have heard the words, how do you feel about that?

Today we have a voice. Your vote is your voice. Your vote is your child's voice.

The whole world is watching.

Your children are watching.

The words don't lie, even hurtful ones are based in a belief system. Some words can't be dismissed, some words shouldn't be dismissed.

School Tour Etiquette

I've been doing school tours lately, A LOT of school tours, and I've got quite a bit of information to share with you all. I am hoping to do that soon, a lot of the posts are even already written! (YAY me!) BUT I cannot share them until we are registered with a school. I want to make sure to share with you everything of which I made note.  I didn't see any huge red flags in any program I toured but there were a few things that could be perceived as not-so-positive. Frankly, I don't want to give any school a reason not to accept my kid so I'm keeping my mouth shut for a while. I will say, I would be happy to send my 14 year old to any of the schools I've seen on this group of school tours. I cannot say the same about the tours I took when we were looking for a middle school.

In the meantime, there is some thoughts I would like to share with you all about touring schools. Here are some basic etiquette reminders if you are considering doing some tours in the future:

Be on time As much as humanly possible, make sure you are on time. Better yet, 10 minutes early as there might be some paperwork you will need to fill out.  Of course there are things outside of your control like traffic and weather but try your best to take all of that into consideration when planning your trip to a new school. I recommend apps like Waze and local traffic and weather reports to help you plan your trip.

Park in visitor parking If no visitor parking is available then park as far away in the lot as you can. This is common courtesy to those who work within the building. You are a guest, you will be there only a little while whereas the teachers and staff may be in and out of the building all day. Let them have the best parking spots, look for visitor parking or suck it up and walk a few extra feet for common courtesy. (Seriously, I saw someone I toured with park behind other cars blocking them in when there were other spots available just further way. Why would you do that??)

Be nice  Please be courteous to the front desk, any security personnel, be flexible if they are running behind and understand that this may not be a private tour and other parents will be present. They are just as concerned about their kid as you are. 

Dress appropriately You are in a special needs school that has kids with a lot of different abilities and needs. DO NOT wear strong perfume! DO NOT wear high heels that *click*click*click* on floors (same goes for flip flops that slap on feet!) DO NOT wear revealing clothing or shirts with crude messages written on them! Remember you are touring classrooms, you are not performing on stage. The goal of a tour is to slip in and out with MINIMAL DISRUPTION to the students! (Can you tell that this one really really bugged me at a recent tour?)

Be quiet (part 1) There are two parts to this, first be quiet during the informational session by administration especially if this is a group tour. Other parents are not there to hear your child's issues and there will be time to ask specific questions one-on-one later on OR they will usually always provide you with an email address so you can contact them directly.

Be quiet (part 2) Do NOT engage the kids while on the tour of the classrooms UNLESS they reach out to you and even then only when they aren't supposed to be doing anything else. Don't walk into a class and try and strike up a conversation with a student trying to pay attention in class or even in the hallways while they are trying to get to class.  Don't be rude, of course, but "staying on task" applies to both them and you.

Be respectful of the school and classrooms You absolutely want to look at the learning environment and thats great! Administration and teachers are proud of their rooms and they have worked hard to make a great space, if given the chance I like to tell them that their space is calm, peaceful, well organized or well thought out which you can typically assess visually. DO NOT touch displays, student work, bulletin boards, desks, chairs, equipment! Also (and I cannot even believe I have to point this out) DO NOT TAKE PICTURES of classrooms where a child's work, name or information might be displayed. HUGE HIPAA violations there! Don't put the teacher or administration in the position of having to tell you this, just don't do it. Why don't we just say...

Don't take pictures. At all You might inadvertently get a picture of a student or staff member or some kind of protected information so it's best to just to just not do it.  

Use your manners A school tour is a great opportunity to see what is available for your child. It takes time away from school personnel's day-to-day duties and it is important to thank them for their time. This one totally seems common sense but on more than one occasion I have been on a tour with a parent who, for whatever reason, treated everyone like their own personal employee. They made demands and were flat out rude to everyone except the Principal of the school. 

Remember that the tour is about the program and school, not your child These tours would take all day long if we went over the needs of each child. Ask questions but make them general and about the program. "Do you have a sensory room?" "How is lunch handled?"Most of the time the people giving tours have other things scheduled for the day and cannot speak about specific issues but they almost always give out their contact information for follow up questions. Use it. 

I really could go on and on, I've seen some weird things on school tours. Name dropping seems to come up again and again but I didn't think it warranted it's own number. It's not really etiquette faux pas, more so just annoying to everyone. Besides, usually no one knows who they are talking about anyway. I'm an Autism Mom, I haven't seen a movie or watched TV with any regularity in a decade! 

Lastly, ignore this information if the school states otherwise. If your appointment confirmation says, "don't forget to wear your newest pair of heels and bring your camera!" by all means do so. Generally speaking, I don't think this is going to happen. 

I'd like to follow this up with some tips that might prove helpful in your quest for a school that meets the needs of your child. Keep an eye out for that in the next few days!!

Changes... Life...

I'm not much for change. Change means chaos most of the time.  We are a special needs family, if you are reading this you probably are too, so you totally get the Change=Chaos thing.

As much as I don't particularly care for change, guilt is worse. I really really hate guilt!! Lately I have had a lot of guilt surrounding this blog and my role within the special needs community. When I started this I did so with an open heart. I wanted to educate and I wanted to share hope, acceptance and community with everyone. What I seem to be lacking lately is time.

When I sit down with an idea for a blog post I usually sit down with a stack of research. I actually like to do research but it is the most time consuming part of writing for me. I haven't had time to research therefore I haven't had time to write.

So I re-group! I want to continue the blog but I want to write what you all like to read and I kept wondering if maybe the research stuff isn't as popular as I originally thought. A quick trip to the Stats page showed me...

The results, my top 3 blog posts are: (drumroll please!)

School Tour: Katherine Thomas School
I Don't Give a Flip, my opinion about Helicopter Parenting
Back To School, analyzing and expecting some issues with the new school year

These posts didn't actually require that much research and are three of my favorite posts as well!  I am very glad that they were so well received.

That being said, I am going to change the focus of my blog for a while. Since my readers like REVIEWS and THOUGHTS blogs and I like writing reviews and thoughts then it seems like a Win-Win scenario!!!

Right now I have two school tours scheduled so keep an eye out for some SCHOOL TOUR posts. I'm touring Katherine Thomas again, this time for their High School program and I'm headed in to Baltimore to tour the Kennedy Krieger School for their High School program as well. As for other reviews and thoughts, I have a lot of ideas so we will see what floats to the top over the next few weeks.

So change can be scary and I know we don't like it much but I am hoping that this small focus change means that I can write more, stress less and get back to the hopes and dreams that I had for this blog so many years ago.  Thanks for sticking with me, we're all in this together <3

The Lunatic's IEP for 2016 (Plus a Case for Teaching Goals)

Lately I've been wondering what happens to a goal driven life when there are no longer any goals? My boys have had some form of paperwork attached to their lives since they were 2 years old, from Infants and Toddlers to now they have had goals (speech, OT, educational, social, etc). Sooooooo many goals, easily in the hundreds by now.

Part of me wonders if that is one of the larger obstacles for special needs adults once they leave the "system", who is there to write the goals? 

Were they taught to set their own goals?

Is it enough to just let them sit in on an IEP starting at age 14 and hope that they extrapolate from that process the need for goals in life? 

What about personal goals? 

Private goals? 

The goals you don't write on paper or tell even your best friend or parent, those goals...

I never considered myself a goal driven person but looking back now that I've hit the big 4-OH milestone, I can see that I have always had some kind of goal in mind. Some of them have been far fetched and ridiculous, some easily attainable to give myself a boost. They are always there and they serve a purpose not unlike the goals written in my son's IEPs. I need to stay on track, I need to track my progress, I need to know that I'm moving forward and if I'm not, what do I need to change? 

The first goal I can ever remember setting was a book list.  I had a 9th grade teacher who passed out a list of 100 classic books that everyone should read before they graduate college. I can see now how ridiculous this actually is, reading classics aren't magically going to turn you into a highly educated and witty conversationalist. At the time though, that list was law and I set to slogging my way though it.  I don't remember if I finished all 100 but I do remember crossing off my 50th book and I considered it a huge accomplishment. Ultimately it didn't change who I am as a person but at the time it gave me a checklist and that checklist gave me a sense of accomplishment.  

More recently you will hear me say, "I hate resolutions, I don't do them." And I don't, first of all it seems arbitrary to use Jan 1 as a start date for something and secondly, resolutions seem to center around diet, exercise and housecleaning. I can't think of anything I would less like to talk about or think about than diet, exercise and housecleaning.  Since I can't separate Resolutions from those issues, I'll consider my goals to be more like IEP goals not to be set once and then forgotten about but to be revisited through out the year and changed as needed to make them attainable so that the feeling of accomplishment is a foregone conclusion.

IEP for The Lunatic Autism Mom

1/3/2016

*draft*

READING

Progress reported on Goodreads 

Goodreads does an Annual Reading Challenge and I've participated for the last 3 or 4 years. I read a lot and I always mark my "read" books on Goodreads so that I don't keep re-checking the same book from the library over and over again.  Last year my goal was 100 and I read 86, this year I've set it to 50 which feels very attainable. I read a lot of books on audio while I'm in my car, while I'm cleaning or doing paperwork. It helps me stay on tack and keep my ADD at bay.  Mostly I read total fluff books with a guaranteed Happily Ever After and those are always quick reads (and part of me feels like I've earned the right since I read all those classics in my teens! LOL!). It's not all fluff though, I go through a good number of Autism related and educational books as well. If you like Goodreads and you want to link up, my user name is MagandSons (like everywhere else).  

READING

Progress reported on Goodreads and a printed checklist

A friend of mine sent me a Reading Challenge, (<--link!!) I thought it sounded fun so I joined! I'm hoping it will shake me out of my fluff and autism book rutt and introduce me to some new authors.  

PT/OT/STRESS MGMT

Progress reported online in various facebook groups

I'm pretty proud of my crochet projects this year. I've been crocheting for about a decade now and I find it to be a good way to shut my mind off and focus on rows and rows of stitches.  I often call it my version of pacing when I'm just too tired to actually pace (which is always). I feel as though I can read almost any pattern and I know all the stitches so it's time to move on. This year I want to learn to knit. I have a knitting machine and I've done some loom knitting but the two sticks kind? I don't know how. Until now. I'm going to start looking for an introductory class this week.  (here's some of my crochet!)

 

SOCIAL SKILLS

Progress reported by my 2 boys

I'm going to play more video games. I like video games but I'm not very good at video games. My boys love video games and when I watch them play it looks like voodoo happening between their fingers and the TV. I want to play more so that I can learn more, get better and, in doing so, spend more time with them. I always want to spend more time with my boys, I should focus on spending time with them doing the things they like. 

GYM

Coach will keep us going

The boys started playing tennis with Aceing Autism and we've kept it going with lessons at a local tennis facility. I've even started playing again. The boys like it, I like it, lets keep it going!!!

EXECUTIVE FUNCTIONING

Progress reported by me and the boys

I saw this Executive Functioning calendar on Facebook and I posted it on the blog page, I like the format and I like the idea of re-evaluating skills every month. Some goals may take longer than a month and I want to be able to carry them over. In doing this I want to open the conversation with the boys about setting personal goals, letting them choose which skills on which they want to work and starting to consider the day when there won't always be someone with a piece of paper telling them what they will be working on for the next month or year.  

There are so many more, the quiet goals that live in my brain that remind me to drink more water or eat more veggies. Those will always be there but they aren't fun enough to write about or even to give much more than a passing thought. Those passing thoughts are important though and I think this is one of those things that special needs families know must be taught explicitly. Over the years I taught myself how to set my own goals and use my curiosity to fuel them. Since my boys tend to put themselves into a bubble now and again and their curiosity tends to lean more towards "screens" than the world around them, I think this is something that is worth adding to those executive functioning skills. When the time comes and the people holding the papers with this year's goals stop, I hope that the boys will be able to make their own and in doing so find their path.  

Dear Sons,

Dear Cameron & Adam, 

I'm sorry. 

Now that you are getting older and we are starting to look to life after school it is with great regret that I must now go against everything in me and try and teach you how to conform. If it were up to me you would forever be able to remain your unique and wonderful self with quirky interests and hyper fixation. But I want more for you and I hope you do too. 

You will need to learn how to shop and pay for your items. 
You will need to learn how to keep a home and take care of yourself. 
You will need to learn how to learn without a teacher and lesson plan. 
You will need to learn how to get from point A to point B. 
You will need to learn who to trust and who you cannot. 
You will need to learn how to stand up for yourself and defend yourself. 
You will need to learn how to fit in... 

You will need to work harder than everyone else

School has been a struggle both socially and academically and we have and will continue to try and help you as much as humanly possible each and every day as you learn the things that are taught in Middle School and soon, High School. I am prepared to help you just as much though college but eventually, sometime soon, society will step in and remind me that I must give you wings.  

I want you to have those wings. 

I hope that someday you will understand that the lessons I am teaching you, as hard as they are, are for your benefit and not mine. 
I hope that one day you will see the value in the hard work we do.
I hope that you will understand that I don't want to change you. I love you exactly the way you are, to me you are perfect. 

It would be very easy for me to just have you and love you forever. It will be very hard to teach you how to be independent. 

As much as I want to keep you all to myself forever, I know how amazing you are and once you have your wings everyone else will too. 

We will succeed, we will fail, we will succeed again but no matter what...

I love you both, exactly as you are. 

~Mommy

Dear Mr. Psychologist:

Dear Mr. Psychologist:

You spent two hours with my son today.
You put blocks in front of him. You put pictures in front of him. You filled out a form.

You saw him for the first time ever today.
Your prior familiarity of him came from a manilla envelope.

You want me not to expect much.
You said the data would be no different than the prior two evaluations.

Dear Mr. Psychologist:

You told me his score was low.
You told me my expectations are not realistic.
You said you were surprised he had come as far as he had.

BUT
Dear Mr. Psychologist:

What you don't know is that we have seen your type before.
That you cannot get accurate data from a child in an unfamiliar setting with an unfamiliar person.
That I didn't request this test, I allowed it.
Intelligence Quotient cannot help set goals or adaptations.
Your results are irrelevant.
They serve no useful purpose.


BECAUSE
Dear Mr. Psychologist:

We were told that he would not talk and yet he talks my ears off.
We were told that he would never show affection yet he gives the best hugs and cuddles ever.
You listened to and then dismissed everyone in the meeting who said what a smart and fun boy he is.
You decided prior to your testing what the outcome would be.
The time you have spent with my son is less than a fraction of his life, I won't allow the results to impact him any longer than that.
Your "realistic expectations" do not matter to us.

We have already smashed and demolished every "realistic expectation" set upon us not because of you, Dear Mr. Psychologist, but in spite of you.  

Photo / mrwallpaper.com

I Swore I Wouldn't But I Am

Picture from: http://id-ea.org/an-optimistic-era-for-global-infectious-disease-control/

After a blog post that I made last April (Feel Free to Continue the Regularly Scheduled Debate... Without Me) I swore I wouldn't have the vaccine discussion again. Well, I should have known better. I never say never for just this reason.

There's no denying it, I HATE the vaccine debate. I don't blame vaccines for my boys' Autism but I will not dismiss someone else's belief that a vaccine has caused their child harm. I only know our situation and my kids, I'm not a doctor and I don't pretend to know everything there is to know about Autism and it's causes. I do, however, consider myself a parent who likes to make decisions based on information and facts.

Today the fact is that California has passed a law requiring kids to be vaccinated.  California Vaccination Bill SB 277 Signed By Governor, Becomes Law

I agree with vaccination. I believe in vaccination. I do think it saves lives. BUT I also think that there are too many vaccinations, too many given at once and too many compound vaccinations. My concern with this laws is that, as it is adopted from state to state (and you know it will) the law will change and tighten to the point where parents are given no chance to make informed consent.

For us, specifically, if my boys are due for a booster (they have received all their initial vaccinations) I request a titer check first to see if they need the booster. I don't give unnecessary shots. Not because I think it will cause Autism, we already have Autism x2! I don't give unnecessary shots because my two boys with Autism don't communicate pain and illness well, every shot gives them a seriously high fever and causes a regression. Every. Single. Shot. If you KNOW that a vaccination is going to kick your child's immune system into hyperdrive, that they will spike a fever over 104 and will have a functional regression that can last up to 4 weeks... would you sign them up for every single shot? Even if they aren't needed?

My current plan is to run titers annually and give booster vaccinations as needed. They are fully vaccinated and have adequate immune levels. I know because I have the test results. This is not a test that is always done, it is something you have to request. Even if you do the vaccinations and have all the boosters, there is NO WAY to know if your child is fully immune unless you have a titer check.

Thats how important I consider vaccinations, so much that I want to make sure that they are effectively protecting my children. At the same time, thats how important I consider my children, I cannot give them a shot that they don't need knowing it will cause them pain and regression. Period.

As the law moves from one coast to another, will I be allowed to do this? That is my fear.

As an Autism parent, here is what I would like to see:

• A separation between vaccination and Autism. It's a tired controversy. It's constantly debated. NO ONE changes their opinion no matter how much you fight and blame and chatter. Those who believe vaccinations caused their child's Autism will not change their mind. I will never believe that vaccinations caused my child's Autism, you are not going to change my mind. The fact is that to me, it doesn't matter but the discussion is damaging to our community and I would like to see it die. 

• I would love to see some research into the immune systems of ASD individuals. There is something there.  Most ASD kids I know fall into one of two categories, they NEVER get sick or they ALWAYS are sick. My boys fall into the never category and I don't think it's a coincidence that their immune system over-reacts so violently to a vaccination and that their titer level remain extremely high for long periods of time. That is the purpose of the vaccination after all, to kick in the immune system. Is there something in the ASD body that causes these kids' immune systems to over-react or under-react? And if they under-react are some ASD kids unknown carriers, thinking that they are immune when in fact they are not? 

• A grey area when it comes to the vaccination schedule. If vaccines become mandatory (and I am not firmly on either yay or nay side), I want to make sure that titer levels are still considered. It just seems bad practice to give someone a shot when their immunity levels are already safe, there is no "more immune" there is just immune or not. If I bring my child to Labcorp for a titer check and they show high titers for Pertussis, you are going to have a damn hard time convincing me to give him a Pertussis vaccination. 

• Bring back individual vaccinations. The combo vaccinations are a good way to blanket 3 vaccinations in one shot but what if you don't NEED all three. This did just happen last year, we had a Tetanus titer level come back still immune but close to the cut off level. At that point, I was absolutely prepared to give the vaccination. All other levels were extremely high. He only needed that one vaccination. EXCEPT they don't make/wouldn't give us a Tetanus only vaccination. Not only that but since he was 13 he had to have the higher dose TDaP instead of the child's booster DTap. This was by far the worst reaction to a vaccine we have ever had, the highest fever and the longest regression. Was this because his body had to also fight off virus' he was already highly immune to? Our doctor told me that the subsequent extremely high fever exactly 24 hours after the immunization was not related. I disagree. 

• Work with parents. I am not the parent that will give 7 shots on one visit. It's too much. It's too taxing. We cannot afford that much regression while we wait for the body to build its immune system. If a parent is willing to bring their child in every 3-6 weeks for one or two shots until the entire shot list is completed then they should be allowed to do so.  

• Take a good, long look at what vaccinations should be REQUIRED. Not which pharmaceutical company donated the most to whichever election campaign. What vaccinations are essential to the livelihood of the greater population. Not all vaccinations are required now for example, you don't have to take a flu shot. If the government is going to force vaccinations they really need to be realistic about which vaccinations are essential and should fall under the law. 

When my oldest child turned one, he stopped trying to talk. All the doctors we consulted told us that when a child is trying to learn a new skill, they will focus solely on that skill. Because he was trying to learn to walk, he stopped trying to talk. I've seen this happen again and again over the years and I've applied it to vaccinations. Receiving a vaccination is a taxing event on the body, it makes adults achy and tired, it makes babies achy and tired, we are more prone to get a cold while the immune system is fighting a vaccination. Vaccinations are a vital part of the health of the world population, there's no denying that. At the same time, they should not be taken lightly. There are risks, there are concerns about vaccines (aside from the tired Autism debate) and it is important that you do your research.

I do not agree with the ruling in California, not because I do not believe in vaccinations but because there is no one medical answer for every person. My medical care is different than your medical care because I am different than you. My child is individualized educationally, emotionally, functionally and should also be individualized medically.