If you've met one person with Autism...

Thursday, January 14, 2016

My oldest son Recker is five years old and was diagnosed with Autism at 16 months old. We spent years learning all there is to know about Autism, Sensory Processing Disorder, all the therapies (OT, PT, SLP, Hippo, Feeding etc..), doctors appointments, everything that went along with having a child with Autism, or so we thought. 

A few years later we found out we're pregnant with another little boy. We were so happy but also a little nervous. We knew the odds of having another child, especially another boy, ending up with Autism as well, were not the best. We told ourselves that when/if that day came we could handle it. We already know what we're doing, right?

Fast forward a year and a half and Déjà Vu...There we were going through the early intervention process and meeting with developmental pediatricians and specialists to find out Ezra has Autism as well. Even then, in that time when he was recently diagnosed, we really believed we already knew what we were doing, it couldn't be that much harder than what we went through with Recker...

We were so wrong!!

If you're apart of this Autism community you've heard the phrase "If you've met one person with Autism, you've met one person with Autism." Meaning that every single individual on the spectrum is completely unique in the way Autism affects them. We learned this very quickly when it came to our two boys. Recker and Ezra are opposites in almost every single way except for the fact they're both male who are nonverbal and have Autism. Its that simple. Here are a few examples of what I'm talking about...

RECKER: Has a sleep disorder and sometimes averages 4 hours a night.
EZRA: Tucks himself into bed most nights and has been sleeping through the night since 6 weeks old.

RECKER: Sensory Seeker
EZRA: Sensory Avoider
EXAMPLE: When we walk into say a big bowling alley with flashing lights and loud music and people everywhere. Recker is in his element, he is calmer and he is ready to run and play. Ezra on the other hand is clawing at the door trying to stay outside, he is covering his ears, closing his eyes,  sometimes crying/screaming and clinging to us for dear life.

RECKER: Play for him is all about running, climbing and jumping off the highest point he can find.
EZRA: He is more on the tamer side and would rather sit and stack blocks or look at a book. 

RECKER: Can't sit still long enough to make it through opening credits of even his favorite movie.
EZRA: Usually can be caught sitting all the way through the end credits of any movie.

RECKER: Very empathetic and caring, he cries when you cry and goes out of his way to comfort you if you're sad or hurt. If he accidentally steps on your toe, he will look at you and touch your toe and say "I'm sorry"
EZRA: Doesn't understand emotions so much, and can be pretty aggressive. He loves to throw things very hard in close range directly at my face then laugh. 
EXAMPLE: Recently I was home with my boys and fell and dislocated my knee, i screamed out in pain and in true form Recker ran to me looked at me concerned then started crying with me. Ezra on the other hand had fallen over from hysterically laughing at me. Then added insult to injury by throwing cheerios at me hahaha 

RECKER: Would rather be left alone to do his own thing, he almost is bothered by us constantly trying to interact with him.
EZRA: Thrives off any kind of attention. He is entirely motivated by positive verbal praise and he would gladly be attached at my hip if that were an option.

RECKER: Still to this day after being in speech therapy for almost 4 years he is nonverbal. He is able to repeat words when fully prompted, and will sometimes be caught echoing a phrase or two from a movie (right now its "P-I-E...PIE" from word world) But he is unable to independently communicate with words, signs, a device, pecs or even gestures.
EZRA: Is also nonverbal but is able to say a few words and signs independently without prompting. He uses the word and sign "MORE" for most things he wants. But he is trying very hard and picks signs up pretty good. He can get our attention, and he will try to tell me what he wants and when i don't understand him i can say "show me" and he will guide me to what he needs and point at it. 

I could go on and on with how opposite they are but the list would never end. Our boys are so different from each other and you can imagine how that makes our day to day life pretty hard and tricky. If you take anything away from this remember that just because someone has Autism does not mean they will automatically be like any other person you've met or know of who has Autism. I have never to this day met another child with Autism that is like my boys or anyone else. Autism does not fit into this cookie cutter definition of "rain man" or even the amazing Temple Grandin. That is not what Autism typically "looks like." Autism looks different to everyone. Both of my children have Autism, came from the same parents, same genes, same house, same everything, but they are entirely different. 

Autism is hard. Impossible some days. But these amazing boys of mine, while they are completely opposite, they work so hard everyday to adapt and live in a world that is not readily adapting for them and for that I admire and love them so much for that. 



Wednesday, September 30, 2015

Lately I haven't been able to get a conversation I had with my mother in law after we first got Recker's diagnosis, out of my head.

It was about friendships.

I remember sitting in her living room with her talking about how great most of our friends had taken Recker's diagnosis and have been so supportive and loving, but that a few had been distant and how it bothered and confused me. The look on her face was that of complete empathy and understanding. She had been there. She explained that she had lost a lot of friendships as well and that it sometimes goes along with raising these special children of ours. I remember feeling heartbroken for her but honestly thinking to myself that it would never happen to us. That times were different and these special children were more accepted and understood...theres no way we would lose friends over this.

The last year has been hard.
Impossible really. And just what I had told myself for years would never happen, has happened. I feel like I've lost a lot of once great friends. While I realize that comes with the progression of life, our relationships dwindle & we realize who our true friends are, the ones that are here to stay...it is never easy losing friends. Especially when you know that Autism played a part in the loss.

Though I have lost friendships, I have gained many more...
This Autism thing is hard. Its been 4+ years and I'm still trying to navigate the difficult emotional side of being a special needs parent and trying to not feel so disconnected from everyone else. But I realized I don't need to "fit in" as a typical mom, because realistically I will NEVER be a typical mom. With that realization came the inspiration to find other moms who DO know what my life is like, who understand and know my autism language, women who I can tell a story to and not get a blank stare or a mortified look but a roar of laughter and an understanding head nod...

Over a year ago a small group of four of us who really didn't know each other decided meet for the first time and get together for dinner. I couldn't believe how it felt to talk to other women who live this same life, it was like this weight was lifted off my shoulders. Thats when I started arranging these monthly dinners with other Autism moms. I have been meeting new Autism moms every month for the last year and it has been incredible. I have made so many amazing friends. GREAT friends. Friends who I talk with on a regular basis and we do "play dates" (aka we sit and talk while our kids play around each other haha) and I can call when I have an autism related questions and vice versa. It has been a life changer to meet up regularly with fellow ASD moms, to relate and not feel disconnected for once.

So yes, my mother in law was right. I did lose the majority of my friendships I had 4 years ago when we first started this journey, but I have kept a couple (amazing ones at that) and gained so many new ones who have helped me grow and better understand this new life we're living. I know that there will be so many more changes and adjustments to come due to Autism, but I now feel better equipped to handle them with friends who have already been there or are preparing for the same "battles". Its nice to have them on my side.

I am also so grateful for the couple close friends who have stuck around and been so supportive, encouraging and always there to let me vent, take me out make me laugh and take my mind off of Autism, even if its just for a bit. You truly try to understand Autism, my boys, my day to day life and I love & appreciate you for that. It means more than you'll ever know.


Be Kind: Part Three -- Stop Judging

Thursday, April 09, 2015

To those Family Members, Friends and Strangers at the grocery store who are silently and (and sometimes openly) judging us, our parenting and our decisions....

You may think we don't see the snickers, stares, whispers or eye rolls, but we see them, and they hurt. Every time. 

My children do NOT act the way they do because we are bad parents, because we spoil them, or because we let them get away with things. They act the way they do because they have a Neurological disorder that affects the functioning of their brain.


And quite frankly we do not need to explain ourselves to you but we will to help you understand...

We work with a team of specialists on a daily and weekly basis who are guiding what, how and WHY we do what we do and say. SLPs, OTs, BCBAs, etc... This is what they have studied and specialized in, BEHAVIOR and how to modify it....

"BCBA stands for Board Certified Behavior Analyst. Individuals who have completed rigorous coursework and passed the exam set forth by the Behavior Analyst Certification Board (BACB) will be awarded with a license. Certification is maintained through continuing education requirements grounded in clinical and ethical practice. BCBAs carry at least a Masters Degree, have accomplished at least 225 hours of additional coursework, and must meet all other legal and professional guidelines in accordance with the BACB's national standards. BCBA's are highly skilled clinicians that are trained in the field of behavioral science as supported by over fifty years of empirical research."

Also there is a difference between asking questions (which I love and encourage) and challenging us on the decisions we make for our children. You do not know them, their medical history or what is discussed between us and their TEAM of specialists which include: Neurologists, Gastroenterologists, Developmental Pediatricians, Audiologists, Sleep Specialists, Genetic Specialists, and their general pediatrician. We all work as a team and make decisions together. What may work or be healthy for most children, may not work or be safe for ours.

Any and every medical decision we have made whether it be to vaccinate or not, eat gluten/dairy or not, to use biomedical treatments or not, or even to give my kids a McDonalds ice cream cone or not has been made with our team of doctors and carefully been made with good reasons...

You think we are lazy parents because we do not get up and put our child in timeout for every "naughty" thing my child does, we have a REASON...We are not giving our child positive reinforcement of our attention by reacting to every "naughty/inappropriate" thing they do. Instead we will ignore the unwanted behavior and redirect them with a more desirable one. Timeout does NOT work for our children, so please stop trying to tell me they need it or to be spanked.

You think we're ignorant and/or trying to be trendy when we put our child on a Gluten and Casein Free diet, we have a REASON...They may have had negative results on their allergy tests but we as their parents see a significant difference in their behavior when we restrict their diets. No we never said or thought it would cure our children's Autism, we are just trying to make their everyday life easier, and as comfortable as possible. We HAVE spoken to a doctor about this, like I said before, every decision we make is made with our doctors.

You think we are spoiling our child when we pick them up every time they cry or reach for us, we have a REASON...He is making an intentional request and that happens to be a goal we're working on with his BCBA, and MANY therapists. That simple action of making a request, is actually not so "simple" for our children. So yes I will pick up my child when he reaches for me and makes eye contact, that will positively reinforce his behavior and will lead to him making more requests in the future. If that is what "spoiling" is, then yes, we're guilty of it.

You think that I'm bribing our kids when we give them a skittle or m&m when they obey, listen or "come" when asked, we have a REASON...We are using positive reinforcers and motivators as instructed by their BCBA, doctors and therapists (yes they told us to use m&ms, gummy bears and skittles). He is learning that when he acts appropriately and does something we've been working on for sometimes MONTHS, he will be rewarded for his great and hard work, therefore making it more likely for him to behave positively or follow instructions in the future.

You think we're slacking and bad parents when we put a movie on and stick them in front of the TV so I can try to catch an afternoon nap, we have a REASON...My child has a sleep disorder and rarely sleeps at night, which means that I am also rarely sleeping at night. I have to stay up with him because if I don't, he will elope/bolt from our home and the chances of him being killed are extremely high. I am simply exhausted all of the time. I am exhausted because I have to anticipate every single thing my children are going to do, everything they need or want because they can not express those things for themselves. I am exhausted because I have to analyze every movement, sound and behavior and decide how I am going to react to ever thing they do or "say", in order to help my child thrive and grow. I am exhausted and need a break every once and awhile. 

I could go on with a list of things we have been accused of or blamed for but I think you get the point. But what I'm not sure you get is that every time you challenge or question our decisions you are insulting us as parents and caregivers. You are belittling every day/night spent studying this difficult and scary neurological disorder that will be with my children through the rest of their lives. You insinuate that I am a bad parent. It is mean but mostly sad to us. Sad that you think so little of us as parents and it makes us second guess our relationships with you.

I'll leave you with a favorite quote by an amazing man we love and respect, Dieter F. Uchtdorf...

"When it comes to hating, gossiping, ignoring, ridiculing, holding grudges, or wanting to cause harm, please apply the following:  STOP IT!  It's that simple. We simply have to stop judging others and replace judgmental thoughts and feelings with a heart full of love... " 

We are their parents. We know them, their bodies, their behaviors, their needs, quite honestly, you don't. We would never and will never judge you on the decisions you make for your family and your children because we love and respect all of you, our family, friends and yes even you the strangers at target who love to tell me what I'm doing wrong and how to cure my children. I would hope that we have earned the same respect from you. So please remember to be kind and stop judging.