Sunday, December 15, 2013

ELF! Eyes Off My Child!

The Elf is on the shelf... NO! Not at my house, that thing is danged creepy! The Elf sits on the shelf in my son's 4th grade class.  This has created a host of issues.

About a week ago my 9 year old gets in the car and our conversation goes thusly:
Adam: Mom, there are some kids who have Elves in their house. 
Me: I've heard about that, what kind of Elves do they have? (already knowing the answer)
Adam: They are Elves that sit on shelves.
Me: What do you think about that?
Adam: I don't want that, promise me you won't buy any Elves to watch me. 
Me: Do you need someone watching you to make sure you are good?
Adam: No, you watch over me good. Those Elves freak me out, I don't want anything in the house that only comes to life while we are sleeping. Promise me, no Elves.
Me: I promise you there will be no Elves on shelves in our house. There may be some elves in some of our decorations but I assure you they are just decoration, like a figurine.
Adam: So it's like the cookie decorations, they look like cookies but they aren't cookies at all?
Me: Yes, exactly like that.

Then last Friday he comes home to tell me that he could not focus at school, he didn't learn anything. (We do daily discussions on focus because we are trying NeuroFeedback to help) I asked him why and he said that the Elf was watching him all day. He went on to explain that he needed to watch the Elf just in case he moved. He explained how the Elf reports to Santa and that he sometimes does naughty things in the night but he doesn't get in trouble for it.

Okay, lets deal with ALL that is wrong in that conversation one at a time starting with: WHY is there an Elf in the classroom?

In a time where Halloween parties are now Harvest Parties and Christmas parties are Holiday parties it seems to me that the idea of an Elf that reports back to Santa would fall under that umbrella. There are people in the world who do not celebrate Christmas, people who do not teach their kids about Santa Claus. I agree that the idea of Santa is now pretty far removed from any religious denomination these days but it does set up one of those "slippery slope" situations.

So first off, I was surprised that it was allowed in the classroom, not that it is directly applicable to the situation I have at hand though. My 9 year old has Autism, ADHD and Anxiety Disorder. The Elf is pretty much a combination of his worst nightmares. Not only is this thing 1) watching him 2) making note of him being "bad" and 3) reporting back to Santa he is also (and most importantly) 4) coming to life at only at night. We have had long discussions about figurines and transformers not being alive and not moving about the house at night and therefore cannot "get" him while he sleeps. We see a Behavioral Psychologist for this and this Elf has set us back.

So basically, my son is afraid of the Elf and cannot pay attention and focus while the Elf is present. He told the teacher he didn't like the Elf. It didn't help. He is currently behind grade level for most subjects and cannot afford to lose 2 weeks of instruction time for an Elf.

Additionally, his school is a PBIS School. Want to know what that is? PBIS.org
The school will focus on three to five behavioral expectations that are positively stated and easy to remember. In other words, rather than telling students what not to do, the school will focus on the preferred behaviors. Here are some examples from other schools:
  • Respect Yourself, Respect Others, and Respect Property
  • Be Safe, Be Responsible, Be Respectful
  • Respect Relationships and Respect Responsibilities

We learned Positive Behavior Reinforcement a looooooong time ago, it is drilled into my brain. Catch your child being good!  Praise! Praise! Praise! Be consistent with rules. Be predictable. Be timely. The Elf monitors behavior, thats it's job. But instead of reporting to Santa the "good" stuff, he is reporting the "bad" and in doing so is in direct conflict with the school's own behavior plan and goals.

So my plan was to march into the school and remind them of the above reasons and demand, like the Scrooge I am, that the Elves on shelves be removed immediately!!

But I did not.

That isn't to say that I won't but I haven't.

This is an unfortunate situation where I am reminded once again that the entire world cannot change to meet the needs of my child. I advocate, I spread awareness but most importantly my job is to prepare my child for the world, not the other way around. Luckily, we had 2 snow days and we talked about the Elf and we didn't talk about the Elf and we tried to make peace with then Elf. In the end there is a price to be paid for this, as there is a price to be paid for almost every concession made.

The price we paid was one piece of holiday magic. For him to not be afraid I told him the Elf was fake. It did not come alive, it does not talk to Santa. I showed him websites of parents who plan their Elf on the Shelf activities to prove to him that the doll does not move around in the night time.  I told him this was an "Adult Secret" and that I trusted him to keep the secret so that his friends may still participate in the Elf stuff.

Did it help? I think he still wants to believe in the magic, he will tell me what the Elf has done that day, last week he was mad because the Elf messed with his "girlfriend's" desk (thats a whole other topic!). He has mentioned a few times that he wish the Elf would not watch him and that he will be mad if the Elf messes with his stuff.  (I pity the teacher who tries that one!) Is the issue resolved? No. Is it fixed? No. Is it being handled? Yes, to the best of my ability. I talk with him about the Elf as much as he wants and we handle each issue one at a time. He has missed instruction time and I don't love the Elf but since we have a pretty big IEP meeting on Wednesday, I'm going to save my fighting for that time. (And I'm pretty sure it's going to get ugly!)  The last day of school is Friday and the elf will be no more and I will cheer!

And now a story and picture. Here is Adam visiting with Santa at The Kennedy Krieger Festival of Trees, thankfully they had special hours for patients and students so we were able to attend without the massive crowds. Initially both boys said that they didn't want to visit Santa then when we were almost done Adam tells me that he did not want to tell Santa what he wanted for Christmas, he merely had a question.  So we got into a short line and watched as other children sat on Santa's lap and told him their wish list. I frantically gestured to my husband to be ready with the camera to capture this moment (I don't have any pictures of my kids with Santa, they have NEVER wanted to do it).

Adam was ready to go, he stepped right up and stood about 3 feet away from Santa and would not go any further. He put his hands out and asked his question, "Santa, have I been naughty or nice?". Santa assured him that he had been nice while looking past Adam to me with obvious confusion. Adam said, "Thank You" and walked away. Had I given it 2 minutes of thought, I could have probably guessed this was how the interaction would go. It was just so Adam and so perfect and made my entire day.

So... as our Christmas cards say, "No matter how many tries it takes... Have a wonderful holiday!"

Thursday, August 8, 2013

I Don't Give a Flip What You Think of My Helicopter Parenting



Its been about a month now since my newsfeed lit up with links to "Helicopter Parenting" articles with my friends adding tags like, "This is the WORST" and "These parents make me crazy!". I pretty much thought, "don't care" and moved on. But since then this has been niggling in my brain and bugging me. So finally when Real Simple Magazine came out with the article, How, and Why to Stop Being Helicopter Parents, I decided to read it.

Now I've gone from "don't care" to "I care VERY much" and it's not that I'm angry per se, I'm frustrated.  You see, special needs parents have to be helicopter parents and this is just one more instance where we are left open to judgement and condemnation by the public who feels they get a say in how we raise our children.  It isn't enough to say, "well, its different for you, you are a special case" by those who know and love our children because not everyone does. The fact remains, in many cases our kids look very normal sitting in the sandbox at the park and I am the helicopter that is revolving around that box and you don't get to judge me because you don't know me or my child.

Would you rather I ignore him, have him mis-read a social situation and then haul off and smack your child?
Would you rather I have a conversation with you, pull my attention off of my child and then help me call 911 when I look up and he is no where to be found? (Do you NEED me to post every instance of child elopement from this summer alone? Sadly, there have been a lot and they haven't all ended well)
Does it bother you that I've sent snacks with my child because we've been implementing a dietary intervention 24/7 for the last 3 months to rule out food as cause for his constant stomach pain? Would you rather I send a list of things that he cannot eat and require that you adhere?
Does it make you feel like a better parent, chatting behind my back about how I called the school yet again to defend my child's actions because he was struggling one day? 

It has taken me 10 solid years to get to a point where I can ignore the stares and comments people make in my presence when my kids are having a tough time. On good days I can ignore them, on better days I can educate them, all other days I lash out at them and their ignorance.  But please, feel free America to hand them more ammunition. Go ahead and call me a Helicopter Parent, in time I will learn to let it bounce off of me like I have when I was called "over protective" and "overly worried".  My job is not to answer to you, my job is to keep my boys safe and healthy first and foremost and until they have learned the skills to do that on their own... I will continue to hover.

It is with frustration, not anger, that I send this blog out into the world. Frustration that so many people have latched on to this (not so) new parenting issue, that it has moved like wild fire across the internet and in doing so inadvertently ostracized entire swarms of parents world-wide who (for whatever reason) cannot or will not land their helicopter. This is not an issue of having a name for it, it is the issue of giving people free license to use it to judge or criticize someone else.

It hasn't been so long ago that mother's of children with Autism were called Refrigerator Mothers, the  idea that we caused our children to be Autistic because we didn't give them enough love and attention. Now we will be called "Helicopter Mothers" because of the opposite. I guess its just too much to hope that one day we will just be called "Mothers"


There are tons of articles floating around about this Helicopter Parenting stuff but I've chosen to only read the one Real Simple article and I want to state that I'm not angry at Real Simple, I am a subscriber and I will continue to be one. I don't consider the article to bad reporting because I am (again) a minority parent and they cannot write every article to take into consideration every single person.  In fact, Real Simple has done a few very good (and emotional) articles on Autism:

Portraits of Love: How One Father Captured the Essence of His Autistic Son

I Don't Know How to Love You






Monday, July 15, 2013

The Week (Month? Quarter?) In Review

It occurred to me a while back that I am online all the time (seriously, all the time), and I'm pretty okay updating the Rantings Facebook page but I never seem to find the time to write a blog post (at least not as good of one as I would like). To that end, I know some people read my blog only and some people read the Facebook page only and the only way I can think to cross the two is to do some weekly roundups! 

Welcome to my first roundup with additional pictures (when I have them), website links and all my witty banter (*snicker*) all in one convenient place!! 

Saturday/Sunday

Learning the real board game because he loves the iPad version so much. May cause flappiness 

Monday

(Morning)
My 9 year old with some serious anxiety issues has a well child visit this morning. This could go one of two ways but the likelihood of it end on the better of the two is pretty minimal. We did blood work for a titer check last week and that ranked in the top 10 worst ASD experiences of my life, it wasn't his first blood draws but it certainly was the most difficult. I'm pretty confident that his titers will show strong enough immunity to avoid any shots today, if they don't there will still be no shots today. First there will be much research (again since data changes) before I consent and create a safe schedule. That's just how this lunatic rolls.

(Afternoon)
Transparency + Predictability = Well Child Visit WIN! 

Adam did so well. I told him EVERYTHING the doctor was going to do and I discussed with him everything I was going to talk about with the doctor (vaccinations, anxiety, ADHD, school, stress). I assured him that even if his labs showed that he needed boosters, he would not receive them today. Thankfully, his labs came back with *very* high titers and no vaccinations are needed. There may be a push back from the school but my doctor is on my side on this one and is willing to fight the fight with me. She is also agrees that medicating is not a good idea since medicating for one issue would make the other worse. Recommendations: Healthy diet, exercise, continuing with Behavior Psych. So far today is a WIN 

(Evening)
This is so true. (link to a wonderful article about finding acceptance as the parent of a special needs child in a room full of moms of neurotypical kids)
The Invisible Mom

(later evening)

'Cause that's how I roll.

I have the *full* county IEP packet in hand to prep for our middle school placement meeting next week. I also have a half carton of Ben & Jerry's Chocolate Therapy and a container of Carmel sauce. I guess I know how my evening is going to go down.

Tuesday

(middle of the night)
Today I'm wondering... If I gave up a night of sleep and instead cleaned every room that does not contain a sleeping human, would I get caught up? I fear not.

(early evening)
I so very rarely make sweeping statements that start with "my child will never..." There is a guarantee within those words what mean, your child will absolutely... That being said, I hate Kidz Bop with a burning passion and I will do everything in my power to keep it out of my home and car. My take on it is, just listen to the REAL song by the ACTUAL artist! They do play it at school though, so my sons often give me updates on which songs have made it to Kidz Bop stardom. You can imagine how today has gone since my 11 year old learned that Kidz Bop 24 contained a song by his arch nemesis Demi Lovato... Yeah, it's gone about as well as the "music" on Kidz Bop 24 is good (which is to say, BAD!!)

Wednesday

(afternoon)
Online summer school is kicking MY ass. 9 year old really really just doesn't want to do it and constantly gives up. Giving up is my Lunatic Autism Mom red button #1. Never give up. Never ever.

(early evening)
Haircuts this afternoon. It used to be that I would look forward to lazy summer days with nothing planned, now I would kill for just one afternoon without an appointment of some sort. Forget mornings, we NEVER EVER get a morning off.

Thursday

(morning)
Can't walk to ESY today because of the looming threat of thunderstorms in the area. The extra :15 minutes that driving affords feels a little decadent.

(afternoon)
I've officially decided which part of the day I dislike the most! No, it's not morning (although they can really suck some days...). The part of the day I dislike the MOST is the first :15 minutes after we walk in the door and the boys are dumping all their stuff everywhere and I'm barking orders like, "hang up your jacket, put your shoes in the bins" and they are simultaneously asking, "Can I get on the computer? Can I play on wii? Whats for lunch?" and I'm trying to unload the perishable items from the grocery bags and the cat is on the table... Yes, that is the part of the day I hate the most.

(early evening)
I found an extremely interesting Smithsonian online exhibit, part of which is the "Ugly Law" of 1867. Wow. 

“Any person who is diseased, maimed, mutilated, or in any way deformed so as to be an unsightly or disgusting object, or an improper person to be allowed in or on the streets, highways, thoroughfares or public places in the City of County of San Francisco, shall not therein or thereon expose himself or herself to public view.” —San Francisco “Ugly Law,” 1867


(late evening)
My alter-ego decided to cop and attitude:

SOON. The county IEP looms, placement is imminent. 
I freaking hope so!!! We're running out of summer! I vow to put away my IEP Lunatic Autism Mom photo as soon as this fight is behind us. 
Until then we shall remain vigilant!!!

(very late evening remembering the conversations of the day with my 9 year old)
9 year old: Can you draw a star on my picture?
Me: Sure, where?
9 year old: In the vomit. 
Me: Of course.

Another gem from my 9 year old today (riding in the car to Target)... 
"Mom, I miss my friend Skylar."
Me: "I know, but summer is almost over and you will see him when school starts." 
"He's much smarter than me."
Me: "Skylar is a very smart boy and a nice boy too, but so are you."
"He likes girls. I like boys."
Me: "That might change some day, both boys and girls make excellent friends." *I'm soooo not going into the other meaning of that one!*

Friday

(morning)
Friday = NeuroBehavioral appointment.

(late morning)
We got a spot for ASkate next Thursday!!!

(afternoon)
Friday confession time: After an NBU appointment first thing this morning (plus the accompanying 1 hr drive each way), lunch with the hubs, a chiropractor appointment for all 3 of us and what should have been (but wasn't) a quick trip to the grocery store for a few items to make french bread pizza tonight... I've put one child on the Playstation and the other on the computer so that I can go upstairs, put on my comfy jammies and zone out for :15 minutes. Lets hope I don't fall asleep because they will totally remain quiet and on screens until the end of time if I let them.

(evening)





Friday, July 5, 2013

Breaking Me

I didn't even realize I was stressed out today. I mean sure, we had ESY plus 2 appointments at Kennedy Krieger which meant the hubs and I were juggling things. I really wanted to be with my 9 year old at his 1 hour drop-in ESY appointment (we walk together and I love it) AND I wanted to be at my 11 year old's NeuroBehavioral Unit appointment, but I couldn't be at both. NBU won and the hubs took the 9year old to ESY. We met up for lunch and then I continued on to Baltimore with both boys for my 9 year old's Behavioral Psych appointment and the Hubs went to work. Everything was okay, really, there wasn't any rushing, it all seemed planned perfectly until...

When Behavioral Psych was over I felt so relieved, like I had been holding my breath. I have no idea why. I declared it a milkshake day because it was snack time, it was hot outside and the boys had done an excellent job. Baltimore has ONE Sonic and if I drive just right, I can put it in my path on the way home. I ordered 3 small shakes and anxiously awaited our Choc covered Strawberry for my 11 year old, Chocolate for my 9 year old and Hot Fudge for myself. I figured it was a good day to splurge. Except that they got the order all wrong. They brought the 11 year old a small but the 9 year old a medium and me a medium. I kept my mouth shut and figured as long as the boys didnt notice, I wouldn't make a big deal out of it. (Except that I am really worried about my 9 year old's weight and he really shouldn't be having a milkshake much less a MEDIUM). The boys were happy so I tried my milkshake and it wasn't hot fudge, it wasn't even chocolate, it was vanilla (I hate vanilla).

I sat there stewing, I really don't need a milk shake, I really need to lose a lot of weight. But I wanted one. I NEVER EVER send anything back for myself, seriously, never. It takes more time and I am always weighing the boys ability to wait over whether or not I can just live with the mistake but today I REALLY wanted that milk shake. So I pushed the button and told them about the error. They said they would bring out a new milkshake ASAP. Except they didn't. I waited for 10 minutes at which point the boys were getting restless and wanting to go home and we still had about an hour drive ahead. So I left, without my milkshake, because really I didn't need it (but damnit I wanted it) and thats when it happened...


I broke. I don't break often, I really really try hard to stay put together but something about this day was just too much. It doesn't seem as such, I've had far more stressful days in the past (recently even). But that was it. The last straw for today. I turned the radio up for the boys, cried a little, drove home in traffic (too fast, I admit) and went over in my head every single thing, person, issue, instance that I am pissed off about and do I feel better? Nope. I don't feel one bit better. So today I won't be very good company and I don't think I'll talk much, I'll probably let the boys have too much "screens", I'll try to make a healthy dinner to counteract the medium milkshake my 9 year old shouldn't have had and when the hubs gets home I may lock myself in my room for the rest of the day because today I am done. Tomorrow is a new day...

Friday, May 24, 2013

Autism: The Vaccine

I've written recently (Autism Awareness Month) that, I'M AS AWARE AS I'M GOING TO GET! and I've written that we are past Awareness and now we are moving on to ACCEPTANCE and then I got ANGRY. Hey, it happens to the best of us.

I'm still getting daily emails saying,  "Vaccines cause Autism" and I'm getting an equal number of emails that say, "Vaccines have nothing to do with Autism". Again, I refuse to take sides. I still believe that vaccines are just one more of the many environmental triggers that are causing this huge upswing in Autism diagnosis. I'm mad that there is crap in my food that isn't food and there are chemicals in my water that don't need to be there.  I'm working around these issues as best I can in the limited amount of time I have.  Why do my kids have Autism, I don't know. I'm quirky, they are quirky, lets leave it at that for a moment.  

What I want to think about today is different than chemicals and pharmaceuticals.  I want to think of Autism as a vaccine. I'm not saying it can cure itself, I'm saying that all the awareness is maybe the acceptance vaccine we Autism parents are looking for.  Think about it, how many times have you felt the need to explain yourself to a complete stranger? Maybe you are wanting to give an excuse? Maybe you are wanting to give and explanation? Maybe you are advocating? Educating? 
My child has Autism and we are having a difficult time right now. I'm sorry if we disturbed you.
Now, how many times do you hear in response,
My nephew (neighbor, student, brother, friend's son), has Autism too. 

The fact is 1 in 50 children are being diagnosed and it's higher in school age children. No matter the cause, the facts are the facts.  We are Autism families and we won't lock our children away, we will go to the park, will we take vacations, we will go out to dinner and non-Autism families will see us.  Some will understand because their nephew (niece, neighbor, student...) has Autism. Some will not.

Over time those who have not been touched by Autism, will be. They will have a grandchild, a child, a friend's child, a nephew who will be diagnosed and then they will learn.  Learning doesn't automatically guarantee acceptance, but for those with open minds and kind hearts it can.

Like vaccines, 100% of the population will never be fully vaccinated with this magical Autism Acceptance vaccine. In some,  the formula will just not take and they will remain judgmental and annoying. There's nothing we can do for them, they are just too far gone for us to reach.

I think I will always wonder why my children got Autism. I will have bouts of anger at a diagnosis that I cannot yell at or hit to find relief.  But more so than any of that I do hope that this Autism Vaccine takes hold, that all the work we are doing right now will some day change someone's life. Maybe it will be for my sons, maybe it will be for yours.

A friend of mine pinned this on Pinterest today and I'm glad she did. I was thinking about Autism: The Vaccine last week and this is exactly why...



Monday, April 29, 2013

The Rantings and Ravings of a Lunatic Autism Mom Celebrates 1000 Ausome Things #AutismPositivity2013

I love stuff like this, flash mobs, flash blogs... what fun! When this came across my screen I knew I wanted to participate but darned if this wasn't the worst possible week for me to be positive. Its been rough around here, there is a lot going on, a lot of changes, tons of meetings, stress stress stress. All of that stuff makes this even more important.

When Autism gets to be too much, when it starts to close in on us it is at that time I need to change my focus the most.  I need to think of all of positives. I need to alter my view point and zoom out to see the entire picture in front of me and then I can re-focus on the things that are the most important in my world.

LOVE I remember a doctor telling me that my child may not ever exhibit the signs of love, he may never say, "I Love You, Mommy" he may not hug or kiss me or want to be touched at all. But what I remember more than that was saying to her, "Look up, he's hugging me RIGHT NOW!" And he was. It was in that instance that I found-

KNOWLEDGE Sitting before me was an expert. She had multiple doctorate degrees, she was THE Autism doctor in the area and she was charging me $300 an hour (2 hour minimum, no insurance accepted). She looked at the file in front of her, observed my son smacking his head on the floor and spinning tops and postulated that he would never talk or hug me. I realized then that I was the expert, no one would understand my son better than my husband and I. With that new found knowledge, I then needed-

ABILITY Never underestimate the ability of a parent on a mission.  My business degrees and a few years handling people and benefits in Human Resources was the best preparation for my new life as a researcher. My years of reading romance novels has dramatically increased my words per minute reading time. Sheer force of will makes me stand up in front of teachers and administrators and talk about what I've learned, what we've tried and how they can be a part of our team-

SUPPORT Friends, family, home, health, community, the Internet and the library are my salvation. Without them nothing else would be possible. The online Autism community is amazing, seriously amazing. I have found support and understanding there when I couldn't find it anywhere else. Autism parents have some serious mad skills, we all want to help our children and don't mind sharing both the good and the not-so good so that we may all find-

ACCEPTANCE It's a basic human need to be accepted. As an Autism parent I hope (fight and wish) for acceptance for my kids, acceptance for our family, acceptance for our good days and our bad.

Our diagnosis is 10 years old now.  It is so easy to get caught up in the details of the day, each fight, each hurdle, each stressor but zooming out and looking over the last 10 years I don't remember today's 5pm meltdown. What I remember is the hug I received in a doctors office, not just the first 1 or 2 spoken words but the first 100 words (and we celebrated each one), the 2am article I found on a website that gave me the answer, the song that he played and the second after a meltdown when he came back from somewhen in his mind and told me that he needed me.

Thank you for letting me participate in this Flash Blog. It was what I needed today before I even knew I needed it.

ADVOCACY -> AWARENESS -> ACCEPTANCE

Friday, April 26, 2013

What I Should Have Done

Today my 8 year old is in sedation dentistry at the local hospital. He has Autism, ADHD and Severe Anxiety, we've been treating it all with Behavioral Psychology and considering starting a medication trial over the summer.  I knew today was going to be difficult.  This is scary even if it is just a full dental exam, fillings, an extraction and sealants but there was no way his anxiety would allow him to have this done in the dentist office. He won't even let the dentist near his mouth.

We were up at 5:30, at the hospital at 6:00 and headed back to Pre-Op by 6:30. Minimal waiting was great, his anxiety didn't get a chance to take hold (yet).  I gave him a bag on the way to the hospital, special treats to help him through the day. Inside was a:

Buzzy 


This is a super cool distraction tool which helps with pain from shots, blood draws and IVs. He has played with this before but never needed it for anything yet, it was familiar to him. (His doesn't look like a bee though, it is just black because he is afraid of Bees. It came with stickers to personalize but he liked it black. Available in Lady Bug as well.)
The Skylander Giant Hot Head




Art2-D2's Guide to folding and doodling

Not a bad loot for a days work but each had a purpose. The Buzzy was just in case he needed a shot or IV, the Giant is for him to hold and to play with when we get home and he is resting on the couch and the book was to look at in the waiting room.

Best laid plans and all that... nothing really helped him once we got back into the Pre-Op room. He had a MASSIVE Anxiety attack and there was very little I could do to calm him down.  What I want to share with you is the pro-active things I could have done to make this morning go easier. Anything for less screaming, less tears (from both os us), less anxiety.

Gown: This was a MAJOR point of contention today. The gown they gave us was small and it was paper. When he wouldn't put it on I thought it was because it was too small so I asked for a bigger one. He still wouldn't put it on and freaked out and was screaming and crying. After an HOUR of me saying, "I know its scratchy, I know it's paper, it will be okay" the nurse who had watched the entire thing said, "how about this one?" Fabric! After an hour? Really? At this point, not even the fabric gown was going on and he was getting tired and was still crying.  He wimpered, "I don't want to wear a gown, girls wear gowns." BIG TIME DUH MOMENT!!!
Lessons learned:

  • Get a gown in advance and practice wearing it. 
  • Call it a ROBE (duh mom!)
  • Ask the nurse if it is absolutely necessary (he ended up going back with a blanket over him but no robe.)
Hospital: I should have called ahead to see if they have an Autism trained nurse on staff. I forget how much time you spend with the nurse prior to the procedure. I very carefully chose his doctor but I forgot to follow-up on the nurse. Meanwhile, are all Anesthesiologists amazing? Once she arrived everything went so much better!!!  She is my hero today. 

 Medicine: The anxiety diagnosis is new but the behavior is not. At this point I should have talked with our doctor about an anti-anxiety medication that he can take as needed even if I have not started the medication trial for a preventative medication yet.  This isn't the first time his Anxiety has made an appointment impossible, after all we are here because he won't let a dentist anywhere near his mouth.  There are times that he has similar reactions to doctors and blood draws as well. 

I am sure there will be more lessons learned today... right this second I am kicking myself for not remembering my own Xanax prescription. After holding him screaming and terrified for an hour, shedding tears myself and feeling hopeless I ended up in the waiting room shaking and upset and hoping my husband would be arriving soon (he had to take my older son to school first).  I'm thinking that if there were ever a time for Xanax, this is it!  

I will update this later as I learn more and make it though today.  

Tuesday, April 2, 2013

Anger... It Happens

I didn't expect it to happen today though! It's Autism Awareness Day and I do not want to be angry. But I am.

I am angry that Autism is the single biggest influence on my family. It is all encompassing and as much as I try to not make it so, it is. It impacts The Hub's job, where we live, our marriage, our relationship with friends and family, our financial security and most importantly it impacts the most important things in our world, our children.

I am angry that I've been spreading awareness now for 10 years. I've marched, walked, written, mailed, donated and spoken. Has it made a difference? It seems to me that the people in Washington DC aren't listening to an over-educated housewife/mother, neither are the pharmaceutical companies, the environmental agencies, the medical community or the school board. "They" aren't listening to us, we are talking, advocating, yelling and there's no response. We are giving time we don't have, resources we need and putting ourselves out there for public inspection all to share our story, to spread awareness and to help. That after all my work for awareness, I still hear these things (thank you Single Mothers Who Have Children With Autism):



I am angry that it doesn't get easier. Every regression, every new issue, every new diagnosis is like starting all over again. Research, educate yourself so that you can advocate for your children. It's up to you to fight the fight, to get what they need to SURVIVE to THRIVE. 

I'm angry at what I am hearing coming out of the Republican party (and some Democrats as well) who see my children as a burden on the economy, who consider their education, their therapies and their insurance an "entitlement". Who want to reduce early intervention, special education and therapeutic services and still expect my kids to grow up and contribute to society in a meaningful manner. How will that be possible without resources now?

I am angry that high functioning special education students slip through the cracks in the public school system. They are bullied. They are bright kids who cannot learn in the way the school teaches. 

I am angry that every achievement for my kids is "in spite of Autism" when some things are theirs and theirs alone. 

I am angry that I have to advocate (read: fight) for everything, multiple times a year. I am so tired of fighting. 

I am angry that I have heard "my brain doesn't work", "I can't think", "I hate Autism! I don't want to have it!" from my 8 year old.

I am angry that I have had to do a restraint on my child. That he will fight against me with everything he has and yet when I look in his eyes, he isn't "there". That I am afraid every time he won't come back. 

I am angry that Biomedical Doctors and standard Medical Doctors refuse to take into consideration each other's research and methodology. That they refuse to work together. That parents are treated like idiots for listening or considering a biomedical treatment when discussing it with a medical doctor and vice versa. That I read and educate myself for days, weeks even before an appointment and have my questions dismissed as "without medical merit" and "thats not a proven therapy".

I am angry that at one point or another I have had to question every single food item, cleaning product, vaccine, and supplement I've ever given my children.  

I am angry at people and families who take for granted the ability to go on vacation, to run an errand, to go for a walk. This is what I hate the most because it tears me in two. I am happy that not every family has to deal with Autism, its just that there are times I wish we could be one of them.

I am angry at the new 1 in 50 statistic, I was angry at 1 in 88, 1 in 110... I am angry at these numbers, they represent a CHILD and a FAMILY. Ignore them, debate them, I don't care... 1 in any number is too many, 1 in 50 should scare every single person who reads it. Thats 2% and I don't even earn 2% on my checking account because that would be "ridiculous". 


I am angry that I have to live forever. That my child may need my help forever. That he may never have a family of his own, that I may never have grandchildren. That I have to wish every single day that I will out-live my own children even though losing them is my own personal nightmare. My only way out of this is to fight now, every single day, to help them NOW so that they may have a chance later. I am so tired of fighting.

I am angry at so many things, more things than I can even put into one blog post. I try not to be angry, it doesn't serve a purpose but it happens. I have my own Autism Sucks days just like my kids do. I'm allowed to get mad and so are they. 

I think that more than anything else, what it the most unfair of any of it is...

What I am the most angry at is something I cannot yell at, I cannot hit it, I can't fight it, sue it, shoot it or kill it, it's AUTISM. It's not a person, it's not an institution it's not a thing and no matter how mad I get, rationally or irrationally it is as solid as air. On days like today when I am angry, mad, pissed off and hurt at what it has done to my children and my family there is no one and nothing I can fight. So I make another blog post, I pick up another research book, I make the calls I need to make and I hope that at some point the anger turns into strength and keeps me going.


Monday, April 1, 2013

I'm Afraid I'm About as Aware as I Can Get

Happy April 2 everyone, Happy Autism Awareness Day! Do you have your blue light bulbs installed? Are you wearing your Autism gear? Do you light a candle? Bake a cake? Here is Autism Awareness Day in the Lunatic Autism Mom household....

It's the same. It HAS to be the same. Because today isn't an awareness day for ME, it's an awareness day for everyone else who doesn't live the Autism life.  My boys will wake up around 6:30 but they will stay in bed until 7:00, they will ask to play on the playstation and computer and I will let them because they are on spring break. We will take meds with breakfast and go to appointments. If they are in a good mood, we will visit the library and maybe grab lunch at McDonalds because, Hey Mom, the Skylanders have landed at good ole McD and we LOVE Skylanders! (even if we don't love McD)

Yes, I will "Light it up in Blue!" but mostly because I have yet to replace the blue bulbs on the outside of the house from last year. I'm still iffy on Autism Speaks these days but I do get chills when I see major landmarks swathed in blue light.

Yes, I'll be wearing my Alex & Ani bangles (20% of proceeds go to the National Autism Association), my April gift to myself last year. I got both Russian Gold and Russian Silver because I'm an Autism mom x2 and dog-gone-it I deserve two!


Yes, I'll have on my Autism Mom "gear" which these days consists of a Sevenly "Autism: Different Not Less" men's hoodie ($7 of every purchase goes to an Autism charity**). I won't even try and trick you into thinking that I save this just for April 2. I wear this almost daily, I've been known to sleep in it and use it as a cover-up at the beach. Even if it had not been stylishly faded and antiqued, it would be by now! 
**The way Sevenly works is that they do a different charity weekly and this week happens to be Autism Speaks. They've got some very cute stuff for sale this week, I am considering a new Men's hoodie but that is difficult because I hesitate to donate more funds to Autism Speaks until I can get a better handle on how they are helping the ASD community.  That being said... look at the cuteness! (Check back with Sevenly occasionally for more Autism charity tees/hoodies/totes!)
In celebration of Autism Awareness Day I will fax in the paperwork for my son's intensive outpatient treatment at Kennedy Krieger's NeuroBehavioral Unit. I will hope that this will *finally* be the piece we are looking for to get past his extreme and unpredictable anxiety driven aggression. I will go over the estimate and the insurance company's pre-determination for my younger son's sedation dentistry appointment. I will follow up and advocate again for more coverage for this service as he is terrified of dentists and won't let anyone near his mouth other than me.  I will send in a grant in hopes of getting funds for summer camp and I will hope that when the time comes for camp, I will have a steady IISS person who can attend camp with my 11 year old because he cannot go alone.  I will do more research on "supporting a child with extreme anxiety in the classroom setting" because that IEP meeting will be here before you know it.  I will be reading through all the Autism Blogs that I subscribe to,  I will spend time in our online Autism Community with people who will probably be spending their Autism Awareness Day the same way as me... keeping the routine.  (ps- I have no idea why this paragraph is center justified but it won't let me change it so... enjoy!)

Lastly, I will go through the piles on my desk and pull out all the Autism fundraiser mailers and throw them in the trash. I will wish that I had more time to write each one and let them know that we are a family living with Autism (x2), we are the one's ASKING you for money so stop asking us. We would if we could...

Keep on keeping on Autism families. Have a great Autism Awareness Day!

EDITING to add another adorable tee shirt!  Nico Apparel has this adorable tee shirt for sale this week with $5 from each shirt going to the National Autism Association. (This one has me very tempted... it's adorable!)

EDITING TO ADD AGAIN: Oh the cuteness of Autism Awareness Month!  This time it's Thread Start with this super cute design and tons of shirt/sweatshirt/dress/pant options for men, women and kids. $8 from every shirt goes to the Autism Research Institute (ARI).



Saturday, March 30, 2013

One of the Ugly Parts of Autism

Some people experience a very ugly part of Autism that is anxiety and aggression.  Right now we are in a big fight against both. I was hesitant to post about what happened yesterday at our appointment in Baltimore but I feel it is important to other ASD families to share the bad as well as the good. Maybe there are other families out there going through what we are and feel alone, maybe this will let them know that they are not. Maybe there is someone out there that has a younger child and wants to prepare themselves for what may come. In either or neither case, this is my story from our Behavioral Psychology appointment yesterday....

During the appointment I watched a full progression of Cameron's (11) rage and it almost killed me. It started simple, Adam (8) had a toy, Cameron didn't want the toy but he was so afraid that Adam would lose it that he flipped out every time Adam put it down. I was in an observation room and the Dr was handling it which was good only in that I was able to see it and know that he was safe because I trust this Dr completely. Cameron completely flipped out, the Dr had Adam leave and join me in the observation room. 

I then watched for 30 minutes as Cameron went crazy. He wasn't "there" he was lashing out blindly, hitting, kicking, head butting, biting, spitting, he put a hole in the wall. The Dr had to do a standing restraint (basket hold) on hold him for a long time to keep them both safe and as soon as Cam started to get tired he unlocked the door for me to come in as well. I started doing all my Mom tricks to calm him down, over the years I've found a few things that are very effective but only work once the worst of it is over. The doctor said he wanted to call 911 and have Cameron admitted for inpatient treatment and I got mad. I kept saying, what are they going to do? What is it we haven't tried? What are we NOT already doing??? In tears of course because I CANNOT put him in inpatient. I just cannot. 

I focused myself completely on calming Cameron down, a combination of firmness, explicit expectations and understanding and compassion. It worked, the Dr said I did everything right which was good since I've been handling this for 10 years. We were headed out of the office and I told the doctor (in tears again) what am I doing wrong? How is it that BOTH boys don't feel emotionally secure when that has always been my only goal? I have an 11 year old in crisis and lashing out when he doesn't feel secure or in control and I have an 8 year old who is highly effected by his brother's outbursts and has extreme anxiety disorder (which we just found out the extent of from a full neuro psych report). 

The doctor is NOT recommending inpatient right now but wants to have a conversation on Monday and start the process for high intensity outpatient treatment at KKI NeuroBehavioral at least twice a week and as much as 6 hours. My whole body hurts, my head is spinning and I am terrified for him, for us and how all of this will impact both Cameron and Adam's emotional state. I'm in full Mom fix-it mode and I'm so overwhelmed I don't know where to start. Everything we have done to this point, I don't trust because it has gotten us here. I have an overwhelming urge to start over completely.  

I am afraid to talk about it with anyone because it makes Cameron seem like a bad kid when he isn't!!! In the whole picture 90% of the time he is amazing but the 10% is extreme and horrible and scary and we never know when its going to happen. I know getting the meds under control will help a lot and that will come from the outpatient care but I'm fighting to figure out how to give them both stability and emotional security when by all standards we are an extremely stable family. 

I don't have the answers yet, but I will. My kid isn't a bad kid, these behaviors mean something. Although he is considered verbal, there is something going on that he cannot convey. We will find it. 

So I'm looking, researching, paying attention to as many details as I can see. My thinking is changing, my focus has shifted. I was given an amazing opportunity to see the entire progression of this outburst. There is something important about the toy Adam was playing with... Cameron didn't want the toy although that was what I would have thought had I not been paying very close attention. He didn't want the toy, he was afraid of Adam losing it, if Adam lost the toy then Adam would be upset. Cameron thought he could control the situation and keep Adam from losing the toy. 

Control -> Fear -> Anxiety -> Erratic and Extreme Behavior

Another case to be made for understanding the ENTIRE picture. Behind every behavior is a reason, behind that reason if an underlying issue... find the issue, support the child. Most importantly, the behavior is NOT the child, handle the behavior, love the child... always and forever.  And never, ever give up.  

Tuesday, March 26, 2013

Books and Sites to Check Out From the NeuroPsych Eval

I'm sifting through 27 pages of my 8 year old's NeuroPsych Evaluation Report and I am both overwhelmed by all the information and relieved to finally have it.  This doctor gave us so much great information within the report and someone on my Rantings and Ravings Facebook page asked for the book recommendations.  I thought I would post it here so that I could easily provide links to GoodReads.com so that we all can read more about the titles and get other readers feedback.  He also included some websites to check out and I will post those here as well.  I am an information junkie so I am loving all these recommendations!!!  (**please let me know if a link doesn't work or if it directs you to the wrong page**)

Book Recommendations

Social Skills:
The New Social Stories Book by Carol Gray
The Social Skills Picture Book by Dr Jed Baker
How Rude!: The Teenager's Guide to Good Manners, Proper Behavior and Not Grossing People Out by Alex J Packer
Incorporating Social Goals in the Classroom by Rebecca Moyers
Promoting Social Competence by Wilma Dorman
Thinking About You, Thinking About Me by Michelle Garcia Winner
The Hidden Curriculum: Practical Solutions for Understanding Unstated Rules in Social Situations by Brenda Smith Myles, Melissa Trautman & Rhonda Schelvan
Simple Strategies that Work: Helpful Hints for Educators of Students with Asperger Syndrome, High Functioning Autism and Related Disabilities by Brenda Smith Myles, Diane Aderon, Dena Gitlitz
Helping Children with Autism Become More Social: 76 Ways to Use Narrative Play by Ann Densmore
Autism & the Transition to Adulthood (Brookes Publishing) by Paul Whelman Ph.D, Marcia Smith Ph.D and Carol Schall Ph.D

Behavioral and Social/Emotional Functioning:
Freeing Your Child from Anxiety: Powerful, Practical Solutions to Overcome Your Child's Fears, Worries and Phobias by Tamar Chansky
What to Do When You Worry Too Much: A Kid's Guide to Overcoming Anxiety  by Dawn Huebner, Bonnie Matthews
Helping Your Anxious Child- A Step by Step Guide for Parents by Sue Spence, Vanessa Cobham, Ann Wignall, Ronald Rapee
Keys to Parenting Your Anxious Child by Dr Katharina Manassis
Exploring Feelings: Cognitive Behavior Therapy to Manage ANXIETY by Tony Attwood
Driven to Distraction by Edward Hallowell and John Ratey
Taking Charge of ADHD by Russell Barkley
The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated Children by Ross Greene


Website Recommendations:

Social Skills:
www.thegraycenter.org
www.modelmekids.com
www.socialthinking.com

Behavioral and Social/Emotional Functioning:
www.csaac.org/autism.htm Service provider resource
http://www.theoatc.org/Usefulresources.asp Visual Schedule Resource
www.myrewardboard.com Reward System

Speech:
www.asha.org/public.speech American Speech-Language-Hearing Association


After all of this:


Friday, March 22, 2013

1:50

I love words. I love to write. I've wanted to be a writer as long as I can remember. I haven't done that yet but I will. I love this blog. I love writing about my family. I love sharing the good, the bad, some hope and some help. There are things I want to write this week, updates, new topics, new hope. Three words have leveled me, three words came across my screen on Wednesday and I've been without words enough for a blog update. So this is my blog post for today, it took me days to process... I have no other words:

ONE IN FIFTY 

Tuesday, March 19, 2013

Broken

In my tenure as an Autism Mom my heart has broken thousands of times and for thousands of reasons but today it fractured, shattered and fell to the ground right next to my child who was huddled into the corner of a concrete seclusion room at school.

I don't love seclusion rooms but I am a realist and I see the reasons why they exist. This was not my son's first visit to the seclusion room, it wasn't his first time this year. Each time has been because he was not safe to himself or to others and I do trust the staff at his school to make that decision.

I'm not delusional, I know that my son has aggression, anxiety, oppositional defiance, impulsivity and puberty and that is a pretty serious mix.  Lately his biggest "trigger" has been embarrassment. He will act impulsively, realize immediately that he has done something wrong, {missing piece here}, lash out in anger and hit fight or flight. The {missing piece} is Apology and Making Amends. This is the piece he is missing right now and something we are working on daily. He goes straight from:

(bad behavior)---->(realization)---->(worse behavior including aggression)

It is my biggest challenge and number one priority to teach him the step in between, I think it will make him feel better in challenging situations and would have helped deescalate so many situations we have had this year. 

Back to today... why did I find my child huddled in the corner of the seclusion room sobbing? Because today was the perfect storm of instances that started off with the modifications in his IEP not being followed. 

One of our most important modifications is "extra time" for tests, class projects, etc. Today in Math (inclusion subject for him with an aide) they took a 3 minute timed test so important that they put up barriers around each desk and the teacher emphasized that everyone was to be silent. When the teacher called time, Cameron continued to work. His aide told him his time was up and he got mad. She kept talking to him and he put his hand over her mouth, remember everyone was to be silent. A "team" was called to remove him from the class because he was being loud and aggressive yet when a counselor arrived he went with her quietly, holding his test until he got to her office where he sat and continued doing the test. Once he was done and the staff wanted to discuss what when wrong, he was defensive and oppositional. From there the day spiraled out of control with a recess restriction (when he probably really needed the movement), a fire drill (where he took off toward the blacktop to join his class for recess) and finally the seclusion room. 

The school counselor called me to let me know what happened today and I dropped everything and headed to the school to meet with her face to face.  We got into the details, I pointed out that he should NEVER be given a timed test and that there are ways to figure out how far he gets in 3 minutes rather than making him stop work or stress about a timer. We discussed the "elopement" during the fire drill and agreed that today was a "perfect storm" day. She asked if I wanted to see him and I said yes. 

When we got to the seclusion room I heard whimpering and she stopped. I looked at her with horror in my eyes and said, "IS THAT CAMERON?". Before she could even say yes, I had pushed myself into the room and fallen to the floor to scoop up my 11 year old baby and hold him while he cried on my shoulder and held me tighter than he has in years. He was in that cold concrete room, laying on the floor, with no shoes, curled up in a ball and whimpering!! I am sure I would have cried with him if I had not been filled with rage. I got him out of that room immediately and took him in to an office and slammed the door to keep everyone else away from us. He held on to me and cried and begged me to take him home. I told someone to get my other son and we did just that, it was the end of the day anyway. 

I have met Cameron in the seclusion room before, I have calmed him from his own rage. I have assisted him in fixing what was wrong, talked through issues and put a "game plan" in place but NEVER have I seen him broken like I did today. At the point when he STOPPED being aggressive and started SOBBING his ass should have been out of that room!!! 

I don't have to tell you that I am mad. No furious. I'm sure you can hear it in my "voice". I don't have the same trust in this program as I did before. I don't have the same trust with the staff as I did before. I do not feel that they were being malicious but I do feel that they screwed up. I have to come up with how I am going to handle it like an adult, how I can address this without damaging our working relationship when all I want to do is storm into the school and scream, YOU BROKE HIM, HOW LONG DID HE HAVE TO LAY ON THE FLOOR BEFORE HE BROKE???!!!  

I know my child isn't perfect, I know he can be aggressive. I know that he is in a program with behavioral supports for this reason. I do not condone him putting his hands on teachers or staff in any way. But I cannot get the picture of him on that floor out of my head! There is a big part of me that wants to pull him out of school, maybe if I wasn't such a realist and able to see the entire picture I would do just that. A lot of things went wrong today and it snowballed to quite possibly our lowest point in the last 5 years of public school. Some time between now and tomorrow morning I have to bridge the gap between PISSED OFF MOM and concerned parent, put my advocate hat on and fix this in a way where we all can work together again to help Cameron. Because in the end, I can be as pissed off as I want but that won't help him as much as much as being a concerned, educated and well spoken parent. I have 12 hours to get there.....


Tuesday, March 12, 2013

Eternal Optimism Put to the Test

One of the good and also one of the most annoying things about me is that I seem to have an endless supply of optimism. That isn't to say that I don't get "down", everyone has their breaking point but for the most part I really do believe that what is best is what will be and when one door closes, another door opens. Yes, sometimes I even annoy myself.

Then there are days like today where my optimism is put to the test, where I am struggling to remain positive and fighting to keep hopeful. Today I have faced:

  • An IISS worker who has stopped answering calls and texts from myself and the company who hired her. This leaves me scrambling to get "hours" logged for the month which is imperative to remain on the Maryland Autism Waiver (and eventhough the Waiver program can be a PITA, it is still helpful).
  • A pediatric dentist who specializes in helping Special Needs kids who found a cavity in my son's tooth back in October and because he will require sedation (very scared of dentists) they have been unable to schedule him for the procedure. It's MARCH! He's in pain. They called this afternoon to tell me (again) that they have no time in the schedule and they are referring me to an oral surgeon, oh and by the way, our medical insurance is denying pre-certification for the General Anesthesia required for the surgery. Dental Insurance will only cover about half the cost of the dental procedure and Medical Insurance won't pick up any of the hospital fees. Looks like I get to prepare for another Insurance battle. 
  • Fed up with the dentist who has put off my child's care since October, I've scheduled him with a new dentist for Friday. We will be starting over. With a child who is terrified of Dentists. What could possibly go wrong? Luckily this dentist is a Preferred Provider with our Dental Insurance so they *may* cover a bit more of the costs of the dental procedure but I think I will still have to fight medical insurance to cover the anesthesia. 
  • Our Middle School options seem to be dwindling by the second. It appears as though the school is choosing the ONE option I just won't (can't) approve. I'm still visiting Private Placement schools but it's looking very unlikely that we will get any county support for the fees. I almost don't even feel like I can fight it because I know there are deep budget cuts coming and I cannot see how they could even consider my plea.
  • Moving to a county with better school programs has always been an option but it is looking more and more like we would almost have to bankrupt ourselves to do that and meanwhile, I really really love the town we live in. It's just small enough and just big enough and I would be very sad to move out of this town and closer to the chaos of the Baltimore/Washington Corridor. Don't I have enough chaos in my life already? 
  • Waiting on a possible new doctor to schedule the beginning of a medication trial for my 8 year old. First we need the evaluation summary from the NeuroPsych evaluation last month AND we need the doctor to call me back to schedule. I've been waiting since Thursday... 
  • We need to "catch up" on our Behavioral Psychology appointments, somehow I made it out of the office at the last appointment without making another one. I have no idea what I was thinking, but now I'm scrambling to get back on track. Meanwhile, maybe we need to add to our behavioral goals to start addressing my 11 year old's obsession with pregnant bellies and my 8 year old's total terror of having his teeth examined.  You know, those little issues.  
  • And my phone just won't. stop. ringing. NONE of the calls are the call-backs I'm expecting either. 

So apparently the world has turned against me today, it's decided to gang up against me and put that eternal optimism to the test. Little does it know, I have wonderful outlets like this blog which allows me to Rant and Rave and be the Lunatic that I am. I also possess the ability to run in shut-down mode similar to when someone is experiencing hypothermia and the body stops supplying the extremities... very soon I will be shutting off my Autism extremities. Lastly, is the knowledge that tomorrow is a new day. Midnight is the magical moment that the reset button is hit and with that today will be pushed into the past. I have no idea what the future will bring, but I'm looking forward to finding out.