Monday, January 18, 2016

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





Sunday, January 3, 2016

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.  

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. 

~Mommy



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.

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

Tuesday, June 30, 2015

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.

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.**