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

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

People with disabilities have been present throughout American history.

(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)

From My Life with an Asperger Syndrome Child

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...

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...

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

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.  

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.