Thursday, September 24, 2015

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. 


Tuesday, July 7, 2015

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.

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.

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 /

Tuesday, June 30, 2015

I Swore I Wouldn't But I Am

Picture from:

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.

Monday, June 29, 2015

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

Tuesday, June 23, 2015

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:

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.**

Friday, June 19, 2015

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? 


Since the forecast looks like this 
(Love you Just In Weather!)

And the laundry pile looks like this

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. 

Thursday, June 18, 2015

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!

Tuesday, April 14, 2015

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.