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.


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:


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).