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.

We Are an Island

I remember back before our diagnosis, I had a list of things in my head that we were supposed to do:

1. Join a mom's club
2. Go to play dates 
3. Host playdates
4. Attend library groups
5. Play at the park
6. Enjoy Mommy nights out with friends.

I don't know where I got this list, it wasn't stuff that I did when I was super young but that was the list we were working off of and...

We were a horrible failure. 

Seriously, we got kicked out of the Mom's club because my son was "too rough" he was "too loud".

Play dates always ended in me hovering and him (again) being too rough or screaming.

When we hosted, I just didn't understand all these other kids who were taking every single thing out, putting it in their mouths and then throwing it into the center of the floor while their mom's talked about potty training and nursing schedules.

We screamed through the entire library's Read and Play session, we signed up once and only attended 3 times.

Parks were a place where I begged him to play and he ran away, always towards danger, never looking where he was going, usually ending with him running in front of a high swinging kid and getting knocked into next week.

Mom's nights out were a partial success. After being kicked out of a local Mom's club, I joined one that was more online and less judge-y and there were a few good Moms nights out I'd call a success. Of course they were rare because I couldn't attend often.

Now fast forward... we got a diagnosis (ahhhh! that makes sense!), OT, Speech, Baby Brother born, practice PreK, Special Ed PreK, Baby Brother Diagnosed as well,  PreK, K-5, NonPublic Placement... and NOW.

Those play date days are far far behind us and we never really got the trick of it. Since then the invitations to play and hang out are very few and far in between and most of the time we have to decline for scheduling reasons.  So now, here we are, 13 & 11 and I have no idea what I'm doing!

We were invited to come and play today, we know them from school, we like them but we've never been to their house and they have never been to ours (this is a universal truth for almost everyone we know). The boys didn't know what to expect and do and quite honestly, I didn't know what to expect and do.  We've been an island for so long, we don't exactly know how to change.  It's not really in my nature but I don't want my nature to limit my boys and I'm stuck.

There are many reasons why I'm worried about this, many of my own issues in my own mind, certainly enough for their own blog post so I'll save it for another day. I can't even say that the play date went badly, it was very nice because our host is one of the nicest (and smartest) people I've ever met. It was just awkward. I know I felt awkward, the boys surely picked up on that and maybe felt it a little themselves.

Now I'm left wondering how I can create a village for my boys? They will one day need a village, they probably need a village now.

How do we do it?

They say that if you've met one person with Autism, you've met ONE person with Autism. Autism is such a broad diagnosis and each person is extremely individualized. I have two boys with Autism who couldn't be any more different. They, themselves, don't really even work well together in the same village.

At one point I figured that since my youngest was high functioning and very social, he would probably do well to make friends with typical peers. Except that he doesn't fit in and now that he is older, most boys his age just look at him like "what are you talking about?". It's not working, he doesn't have any friends and now he is heading in to middle school and it's not exactly going to be an easy road for him.

Around the same time, my oldest was really struggling and needed a school with more consistency and routine. He went to a non-public school and I stressed about it. It's been great for his anxiety, aggression and behavior and he is probably even accessing his education better (although at a slower pace). The price for that he regresses, isn't moving forward with his interests, goes into his "bubble" more and has completely fallen away from things that would be considered "normal" or "natural" for a 13 year old.  His current classmates probably mirror him best in temperament, educational and communication level and at the same time, they don't.

So I continue to try and step outside my own comfort zone and keep trying. More times than not, everything goes perfectly fine and I still feel like it didn't work.  I don't know, I guess I just thought that since I had the to do list it would all be easy. I thought that by the time we got to ages 13 and 11, we would have a core group of friends that we would hang with. The mom's would sit pool side and chat and relax while the kids ran around and played. That there would come a time when I could let down my guard and relax a little. The reality is that the only time I can let down my guard and relax is when we are on our own little island, sequestered within the walls of our home.

It's not what I want for them, it's not what I want for us. We just don't "fit" anywhere and I fear that our village is out there, in pieces, they are their own island.

Links I found on Pinterest...

Seven Social Skills Worksheets for ASD Kids Who are Socially Isolated

Social skills card teaching activity for children with ASD who are isolated

5 Things Special Needs Moms Won’t Tell You

Are We Calm Yet? Making CALM JARS

It's day 3 of Summer Vacation and as I stated earlier (on the Facebook page) it is the summer of ART! Today we did our first project. CALM JARS

I would love to say that the boys are super excited about the Summer of Art but quite frankly, they aren't so stoked.  Art doesn't usually involve a screen and they are very very addicted to screens. Part of the plan was to choose projects to get them away from screens so like it or not, we will do ART! (or crafts, whatever)

Today we were supposed to have storms all afternoon so I figured it would be a great day to do Calm Jars. I found this link:

http://www.therealisticmama.com/11-awesome-calm-down-jars/

And decided to have the boys make the Glitter Calm Down Bottle while I made the Ocean in a Bottle. Both are super simple and don't require a lot of materials.  I had a few left over bottles, two NeuroBliss bottles and one small Smart Water bottle.  

First we assembled our stuff, 

Cameron chose purple, gold and green glitter with gold stars. (The M&Ms were snack and my leverage to get them to come to the table) Adam chose blue and silver glitter and silver stars. I spent a good amount of time trying to decide which order these should go in the bottle, the instructions were a little vague so I tried to be logical.  We went with:

Glue -> Food Coloring (1 drop) -> Glitter -> Hot Water

       

The glue took the longest, received the most complaining and almost doubled as heavy work. There are much easier ways to get glue in a bottle but I'm glad we squeezed it through the little orange cap, sometimes things aren't easy but they are worth it.  

My jar was probably the easiest. 

Fill the bottle 2/3 full of water -> I added white glitter (why should the boys have all the fun?) -> fill the rest of the bottle with oil -> Shake

The result!!!

Cam's is on the left, mine in the middle, Adam's on the right

Are we more calm? Nah. Did the storm arrive? Nope. How long were we off of screens? ONE SOLID HOUR! I'll take it! 

**That sounds like they spend the entire rest of the day on screen which isn't exactly the case. When they aren't on screens they like to look through the books we got at the library, maybe even read some of them, play with Legos, fight and ASK CONSTANTLY for screens!!! Sometimes they eat too.**

Welcome to Free Day

Today wasn't supposed to be a Free Day. I had plans for the day, an adventure!!! Well, not really, the boys love doing the Utz Factory Tour during the summer and I had planned on taking them today. Unfortunately, the (free, self guided!) tour isn't open on Friday.  :(

The Hubs and I talked about it this morning, me saying, "I don't know what to do today, I *should* stay home and do laundry but the boys will be so bored!" He suggested a "Free Day", kissed me on the forehead and headed back downstairs to make sure the boys aren't eating cookies for breakfast before heading off to work. (I'm a lucky gal!)

I laid back in bed and thought about a Free Day, what would that look like? What would we do? There would have to be rules, we can't just go with Martial Law for a full day... can we? 

No. 

Since the forecast looks like this 

(Love you Just In Weather!)

And the laundry pile looks like this

(http://botaday.com/node/1267)

A FREE DAY it will be!!!

Rules for a FREE DAY:

1. You may do whatever you want EXCEPT: property destruction, saying mean or hurtful things, hitting, kicking, biting, spitting, bumping, slapping, sitting on another person, or anything else that may fall under the category of "keeping personal space" (some exclusion apply*)
2. Any infraction of the above rules will result in a 30 minute Free Day ALL STOP! It doesn't matter who did what, where it happened or if you feel "justified" in your behavior. An ALL STOP means everything goes off, silence will reign and I don't want to hear another word for a minimum of 30 minutes. 
3. All regular screen restrictions apply, this does not mean you have full access to Netflix, YouTube, or the entire Internet in any way. 
4. I want to hear all about your Wii adventure, movie, tv show, book, picture, Lego creation, etc!!
5. All daily chores and personal care still must be completed. Cameron will unload the diswasher and Adam will feed the cat after dinner, as usual. Additionally, you will be responsible for folding your laundry basket after dinner as well. Teeth brushing, showering, putting on clean underwear, wearing deodorant is NOT OPTIONAL!

You will find me in the laundry room... Just kidding! 

I spend the majority of the year saying no, limiting screen time, policing the "junk food" stash and making sure everyone's shirts match their pants, the idea of having a day where I get to say YES the majority of the time makes me feel giddy!  Being able to give myself a free day as well is very appealing. I'll still cycle the laundry because it needs done but maybe I'll also listen to a great audio book while I'm at it. I still need to make sure the troops get fed, but maybe it's okay to heat up the left over pizza and call it lunch. Maybe I'll tackle one of those big clean up, non-priority, projects (my desk!)  or maybe I'll start a new crochet block. Maybe I'll sit downstairs and watch Adam play Splatoon, maybe I'll even get to play too!  Maybe Cam will ask me to play a board game with him or watch a game show! Honestly, I cannot wait to see how the day will go.

For now, you'll have to excuse me. It's 8am and I think I'm going to have cookies and milk for breakfast. It is a Free Day after all.  

* exclusions include hugging, kissing, cuddling and snuggling Mommy. 

What? Teachers are People Too?

Today is the last day of Elementary School for my youngest son, Adam.  Both my boys attended this school from K-5th so I've been working with the administration, teachers and staff now for 8 years. It's very hard to say good bye. We have struggled and triumphed within the walls of that school and its hard to imagine anything different.

Today I sent in Thank You letters to the teachers, a lot of them.  There have been so many people who have helped my boys gain their educational foundation, everything else from here on out will lie on top of that sturdy foundation.  They helped me too, without their patience and expertise I would not be as strong an advocate as I am today. I'll tell you, it's hard to express all of that in a card, gift or even a blog post.

Along with this note, I also added the URL for this blog and the Facebook page too. That was sort of a difficult thing for me. If you are a long time reader, you know that I have been angry, hurt, scared and humbled over the years. I've written posts about all of it, some of the darkest days when Cameron was out of control was written about on this page. I worried what the teachers would read, how they would react, would they be mad? 

Then I remembered my goal for this page, I want to be honest about Autism. I want to show the good and the bad. I want to remind everyone that Tomorrow is a New Day, that a bad day is not a bad life, that we are all human deserving respect and care, that overcoming what is in our heads sometimes is the first step is making a difference...

I remember a day when I was about 8, I was at the public pool in Lebanon, Missouri. This is where I spent the majority of my summer, Nintendo wasn't invented yet and AC was a window unit. The pool was the place to be on a hot day. One of my teachers was at the pool with her kids and I just sort of blanked out for a minute. My teacher was a mom?? What? 

In my mind teachers, like doctors, were elevated above simple things like raising a family and keeping house.  They were all knowing and never questioned.  Needless to say, this thought changed that day and has continued to change though out subsequent years. Still, I hold teachers in the highest regard and count many of them as friends.  I cannot imagine being a teacher right now, the expectations of them are so high, the pressure and stress is intense and the demands put upon them are unfair. I will always be on their side for wage increases and additional support and resources in the classroom. More than once in the last few years I have been so frustrated and wanted to yell, "Just let the teachers teach!!!" when the testing days dragged on and on and curriculum spiraled out of control.  

I've been mad, sad and desperate over the years and it has all shown up in some form on one Lunatic Autism Mom page or another. I have always respected the privacy of my son's teachers and never posted anything on these pages about them specifically but I have been mad and scared at specific times and I've used this page as a way to get those feelings out. I hope that this does not turn away the teachers I've invited to this page today. Every event has taught me something, every argument, every scary moment has been another step in our journey. Most days I wish life didn't have to be this hard, that every single thing wouldn't be such a struggle, then I think of where we are now and where we once were... we have come so very very far and we have many teachers to thank for that.  

What? Teachers are People Too?? (pending post)

It's only half written! But it will be done soon so check back, in the meantime... this is soooo Adam!

Decisions... Get The One You Want

Sorry for the long break in between actual blog posts, if you follow along on the Facebook blog page then you already know that I'm up to my neck in Middle School placement stuff. Unfortunately there is no end in sight.

In dealing with all the placement issues I have kept a statement in my head, it is universal and all encompassing and I want to share it with you all.

Decisions are made from data.

Simple, to the point, easy to remember.  I liken it to my every day rule of Behavior is Communication. Not a day goes by during a transition year that I don't remind myself that Decisions are made from data, data has no feelings, data doesn't lie. 

This statement has prompted a change in my placement efforts, it started with my oldests son's placement into a Non-Public School (Kennedy Krieger School) and has been fine tuned into my youngest son's placement this year (to be determined... STILL!). Its a shift in thinking and its not easy but it is EFFECTIVE. Here's some advice:

Start charting every piece of data you have in a spreadsheet. Start in Kindergarten and keep going. You will quickly see what data you are missing and can then ask for it. When you are looking at how your child is progressing in grades, support visits, behavior, whatever, you have it all in on one sheet to quick reference. I have had many spreadsheets over the years but the ones I am working off of currently are Grades, Global Scholar Scores, Goals, and Quarterly Classroom Assessments.  In the past I've also had spreadsheets for Support Room visits per day and Targeted Behaviors. Anything the school keeps data on you have access (request it!) to and you can chart it.  

For this transition year I have created some charts from the spreadsheets so that I can easily show how my child is progressing (upward or downward trend). By adding in the upper and lower bounds of the testing population I could then get a picture of what my child would look like when placed into the general population. A graphic representation is hard to dismiss or ignore when you use the school's own data to show a downward trend of a student falling far below typical peers.  

Here is what I plainly saw and could then plainly present to the IEP team once I gathered all the data. Grades were decreasing. Goals were not being met (and I thought I was on top of that but years were passing and goals were being changed without actually achieving the initial goal! I was shocked at the oversight!). His Global Scholar scores and classroom assessments were flatlining or decreasing. 

THIS changed my entire approach to this transition year and how I approached goals, accommodations and how I worked with the team entirely... Data doesn't lie.

All of that being said, one datapoint is one datapoint. I put no stock in grades at all and even standardized testing isn't all that great either BUT my youngest child is INCLUDED so he is being compared to the "typical" student therefore as long as he is in inclusion, that data is valid. It should be tracked and considered. 

Change the language you use. How you feel and what you wish and what you think are valid and is certainly something you need to keep in mind but when you are trying to work for more speech, an intervention, a placement you will get much further with: The data shows... His current trend... What was observed within the classroom... Your feelings, wishes and thoughts can be contradicted, Data is fact.

Keep going. Most of what has happened this year, most of what I have requested, has been because it never occurred to me that I couldn't.  It never occurred to me that I couldn't contact my son's projected Middle School to request a meeting in October for placement in the next school year.  I met some really lovely and hard working people that flat out told me they didn't think they could meet my child's needs.  Okay then, thanks for your honesty. Lets go to Central Office and ask the people there which schools they think CAN meet his needs and lets visit them too.  It wasn't until very recently (March) that someone told me that this isn't how it was done. At this point I've worked all the way up the school "food chain" and never once has it occurred to me to stop.  I contact the people I think can help and I ask them for help.  I am a life long learner and I'll take any help and advice I can get. 

Work smart. I do not consider myself a Warrior Mom. I do not go into meetings mad or making demands.  It's just the way I work. Other ways work for other people.  I have my data, I have my suggestions and if anyone feels a different way than I do then I will welcome their data and their suggestions.  Since we all have the same data... see where I'm going here? I firmly believe that a team effort is the most effective way to support a student. I am a member of that team, my son is a member of that team, our specialists sometimes will weigh in as a member of the team and the rest of the team is provided by the school. Its never perfect but when it works, it works amazingly.  

I've already written way way more than I expected and now I have to get back to real life.  I will try and figure out a way to put up some spreadsheet ideas or templates that I find helpful.  They are nothing fancy but it's what I can handle.  Also, if you have a spreadsheet that has been working for you and you want to share it, feel free to do so!!!  

Hang in there everyone, we're all in this together.  

Yelling at the Pieces

This week I was given a compliment from a fellow parent, he said that he admired my patience with my boys. I should have said, “thank you” but instead I think I mumbled something about my patience being long fought and hard won. This is true. In the past fellow parents have not been as kind as I was dealing with tantrums and rages and just trying to get though the moment. It has taken me YEARS to have the level of patience I do now but, in no way, shape or form do I have an extended patience level. In all of thirteen years I have amassed a level which can last just 45-60 minutes, max. So yes, that compliment was very nice and has made me feel very good this week. I am just thankful that my younger son's appointment was only 50 minutes long while I waited in the lobby with my older son. That I did not reach my breaking point thus forcing this fellow parent to retract his praise and consider me to be the lunatic that I am the majority of the time.

Fast-forward to today and I am at odds with my own frustration and anger and I want to YELL at the thing that has brought me to this point. I cannot. They say that Autism is like a puzzle and “we'll keep trying until the pieces fit!” but there are other pieces at play in this puzzle that make up the small bodies in front of me. One of our biggest obstacles this year is helping my 10 year old traverse life with his puzzle pieces of Autism, severe ADHD and Anxiety Disorder. Its a balancing act of figuring out which puzzle piece is being played at that moment, taking into consideration the needs of that piece all the while trying to balance out the other pieces at the same time.

I am frustrated with Adam because we attended a Lego event at a busy store. Unbeknownst to me he brought along a small Lego creation of his own along with two transformers all shoved into his pockets. As we were checking out sofas after the event, he started pulling out these small toys with many pieces and parts. With the new lego creation from the event, he now had 4 things in all AND a pair of noise canceling headphones. As soon as I noticed the toys coming out of the pockets I gathered everyone and we headed out of the door, I wasn't very kind about it. My frustration was evident.

Bringing things along is not new and its not uncommon for kids with Anxiety. They need something familiar, something comforting. My own anxiety of leaving things behind and having my son freak out over a lost toy does not play well with Adam's packrat anxiety reduction technique. Once everyone was back in the car we headed out to lunch, my son was happy with his new Lego creation and my frustration level went back to a manageable level until...

We arrive home and I'm unloading the car, its raining and I want to make sure 2 Lego creations and 2 transformers are stuffed back into pockets as well as the library book my oldest brought along with him, my handbag and cell phone and...”where are your headphones?” The last time I noticed them, they were sitting on a table in the furniture section of the department store while I was shoving toys back into the pocket of my youngest's cargo pants. My frustration level went right back to where it was before and then climbed a few levels beyond that. I'm saying things like, “WHY did you bring those toys...” and “YOU KNOW you aren't supposed to...” and “I'M SO FRUSTRATED with you...” And my son got upset, actually both of my sons got upset. My youngest because I was frustrated with him and my oldest because he didn't understand why I was upset and he was afraid he did something wrong.

And I got mad at myself because I wanted to yell so freaking bad!!!! I wanted to get mad and try and get him to understand everything he did wrong and to learn this lesson so that **I** wouldn't get frustrated again. Ummmm... see that there? I, Myself, I, I, I... Wow. Yeah, that was realization #1.

Realization #2 came a few minutes later after I had shut my mouth. Getting angry at a piece of the puzzle is not new to me. I have plenty of “I hate Autism” days, I let myself have that anger and then remember that no matter what I am feeling, the boys difficulties far far outweigh my own. Today was the first time I really really needed to be angry at ADHD, the piece that was forgetful, the piece that left behind the headphones, the piece that can't think beyond the moment and see how much they will be needed 15 minutes, 30 minutes or even a day from now. So I thought, yes, lets be angry at ADHD! So I started in with the “You know...” and “I'm so frustrated...” but I forgot about the anxiety piece.

He got mad, he got sad, he got frustrated as all these pieces took center stage in defense of his choices. As I watched this unfold I realized that I cannot ever get mad at just one piece. They aren't removable or interchangeable, they are always present and together they make up a really awesome (sometimes frustrating)10 year old. I love that whole little person, every piece and part, with my whole heart. Its unrealistic to think that I won't ever get mad or frustrated again but I will now and forever remember that getting mad at just the ADHD makes about as much sense as being mad at the headphones that were left behind.

We all hit the reset button now. The Hubs went back out in the cold rain for the headphones, we all had some quiet time and peace is once again reigning in the household. Lets hope it remains for the rest of the day, the likelihood of which is about as much as the headphones walking home on their own.

Smiles Staring Back at Me

My oldest son with Autism goes to a special school. We fought for this school and it has been an excellent placement for him, he is calmer and happier. Every Wednesday they have early dismissal and I choose to pick him up on those days and save him from his extremely long bus ride (1.5-2 hours). Spending these hours with just him is a special treat for me and I hope one day he will look back and consider them a special treat for himself as well.

Waiting for him today I look over the picture wall in the lobby, as I do every single Wednesday. My son's classmates faces and smiles stare back at me and I smile. I smile every single time. They are learning, challenging themselves and working so hard and they are smiling and I love that so very much.

Sadness sneaks up sometimes. I'm going along the routine and out of nowhere the unfairness of it all hits me.  It occurred to me in a flash that I am seeing faces of kids of all ages, beautiful faces and huge smilies and I'm sad. 

This one is tall and strong, he is the quarterback of the football team. This one is smiling while talking to his classmates, they obviously respect his opinion, he is most certainly the class president. She is standing at the board doing a math problem, she is that beautiful and smart girl who is universally liked. This group of guys makes up the drum line in the marching band, they rock! 

Except none of this is true. 

What makes me so sad is that it could be true! It should be true and I am standing there looking at their faces and wishing so badly that it were true. 

I know this sadness will pass, the "what could be" will pass along with it. I know this is the grief cycle repeating itself once again and once I get through this part, I will get back to acceptance. I look forward to that, with acceptance I also gain strength. I'll be the first one standing next to my beautiful boy saying, "You want to be quarterback? Lets do it!" but for tonight I will think of those faces and those smiles and wish that all their dreams could come true and that they keep smiling along their journey. 

Pre-Back to School... Analyzing

We've been talking about going back to school this week. A lot. My 10 year old's anxiety hit the roof about mid-week and, in contrast, his 12 year old big brother can't wait to go back. It's made for a polarized house of ups and downs and I'm getting motion sickness.

My youngest struggles in school, Autism + ADHD + Anxiety Disorder (NOS) = a very stressful school experience. He struggles the most with Math although other subjects have specific difficulties as well.

We did some chatting specifically about sitting in math class where I tried to get a feel for what his issues are outside of the learning material, should I ask for his seat to be in a specific spot? Does he need a different type of headphones? Would he benefit from a different kind of paper? Pencil? All that kind of stuff. Basically, can I minimize every other issue so that he can focus better on the subject in which he struggles most?

It was then that I realized a big issue, something that was ESSENTIAL to my own understanding of mathematics, something that could make a fundamental difference:

THERE IS NO MATH TEXTBOOK

 I hate to constantly compare my education in the 80s-90s to education today. There was a lot bad about my education and a lot good but from 3rd grade on I always had a textbook. The idea was that the student would read the 3-4 page explanation of the math principle, which included vocabulary and example problems, then the teacher would go over it in class with more examples. Then we would complete some work relating to those problems. If I didn't understand the vocabulary, I could turn back 2 pages and look for the word in bold. If I forgot a step in solving the problem, I could turn back a page and look for an example that was similar to mine. If I took math homework home with me, the book came too. The fact is that I always had a REFERENCE to the material I was supposed to be learning until I was tested on it.

My son has no text book. When I volunteer, I make copies of worksheets, I tear pages out of workbooks but I've never seen a math book (spelling book, social studies book, language arts book...etc) on/in/near his desk.

This makes me wonder about the progression of education, I get that curriculum is different now and teaching is vastly different than my experience but at what point did books become obsolete? Where are the references and the examples that would help the vast number of visual learners like me and like my kids. Being able to see a page in a text book again and again, allowing a visual learner to take a mental "snapshot" of what is on that page is kinda key to someone who thinks in pictures and/or is a visual learner. You cannot do this with a white board or a computer screen unless you are willing to flash the exact same (to the detail) picture/explanation every time it needs to be referenced by every child. I can remember being in the 5th grade and closing my eyes during a test so that I could picture the page of a long division example, I could even remember the page number. I would have failed that test without that picture in my head.

In considering this issue, I attempted to look at it from the school's perspective as well.  Books are expensive, I get that, I'm a book lover from way way back.  I also hear from teachers that there is a paper shortage. That they are allowed ONE case of paper per school year. Should they require more, they either have to hope a parent donates some or buy it themselves. I'm not at all surprised at the paper shortage when I'm volunteering and making 30 copies of 10 worksheets per week just for math lessons.

The steps to solving a math problem out of a text book:
pull out lined paper
open text book
read instructions
copy problem
solve
repeat
(**no copy paper required, lined paper is cheaper, books are a reusable resource**)

There were a lot of things wrong with the education of the 80s and 90s, access books and reference materials to every student was not one of them. I'm not going to lie, I'm kinda pissed about this. There are many changes to today's education that is in direct contrast to my sons' learning styles and I'm starting to think that the worst of them all is something that should be the easiest to provide. Technology is great, no doubt, but arguably the greatest invention of all time, the invention that spread the most information ever through out the entire world and through out time was the printing press.