Wednesday, September 30, 2015

Friends

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.

Thursday, April 9, 2015

Be Kind: Part Three -- Stop Judging

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.

EVERY THING WE DO IS METHODICAL. WE HAVE A REASON FOR IT. 

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.




Wednesday, April 8, 2015

Be Kind: Part Two -- Retard.

[Originally posted July 2013]

In today’s world, our reality is media-driven. The images and words used to describe others can be very powerful and influential. “The press can have an enormous impact on society’s knowledge, attitudes, and public policies regarding individuals with disabilities” (Blaska,1990, p. 26). This type and level of influence becomes even more important when we consider how impressionable our youngest members of society are. Children form attitudes and opinions based on what they hear and read. When the adults around them use words like retarded, handicapped or disabled in conversation, it reinforces their place in language and attitudes for the next generation (Blaska, 1990)



"That is so RETARDED!"
I get that lump in my throat. Did she just say that? One of my closest friend? The one who was so sympathetic and there for me when Recker was diagnosed with Autism. The same friend who held me tight and comforted me when i felt like my world was crashing down? 


"I felt like such a RETARD!"
This time its an immediate family member, telling a story sitting around the table at Sunday dinner. Everyone is laughing except me. I can feel my heart pounding, my face is getting hot and flushed. I dont want to be the downer who stands up and corrects them. I feel sick to my stomach.


"You are so retarded!"
A stranger jokingly says while speaking to their friend. I hear the word and look down at my sweet boy sitting in the grocery cart. I pray he doesnt understand the meaning of the word. I struggle whether or not to say something and bring attention to it in front of Recker. 


The "R" word is used all the time by waaaay to many people. 


It is used as an insult. Its used in movies, the radio, at school, on social media and unbelievably even in the White House. It has become so common and used so freely that people dont think about how hurtful it really is and how many people that it affects.


I have a hard time stepping up and responding to someone when they use the word in front of me. I always fear embarrassing someone or upsetting them. 


But its time that it stops. 


Most people who use the word claim that they arent using it negatively, or say that they "don't mean it like that."


Well what you dont relize is that it hurts me, and it hurts Recker. 

When the "R" word is used, it is thrown out there into the Universe, it ultimately hurts Recker and EVERYONE with cognitive disabilities. By using the word it, even just the once it shows intolerance and ignorance. 


Recker may not understand the meaning of the word now, but as he gets older and goes to church and school the "R" word will end up separating him from his peers. It will tell everyone that Recker and those like him are less than, that they are inferior and unworthy.


If you know my son, you know that in NO WAY is he inferior, less than or unworthy.


Recker is the most sweet loving little 3 year old there is. His eyes just burst with love and happiness. That infections laugh can get a whole room rolling with laughter. Everyone that knows Recker can not help but love him. His aunts & uncles, grandparents, friends, teachers and therapists all absolutely love Recker and always want to be around him. He is so loved. So why is it that those that love him still say the "R" word? Simply we need to try harder. I am not perfect. Before we had Recker, im sure you could catch me using the "R" word every once and awhile. 


But it is personal now. 


Please try to be kind when speaking. Do your best to understand how and why that word is so awful and negative. Remember that it hurts so many amazing people when you put that word out into the world. Our sweet Recker included. 


Please do not be offended when i correct you.
I am just trying to advocate for my son who can not do it for himself.


Tuesday, April 7, 2015

Be Kind: Part One -- Autistic vs. Having Autism

[Originally posted on 6/11/13]

My whole life I have been such a peace maker and very passive. Ive always hated confrontation and would just make myself suck it up whenever someone or something bothered me. I just took it. I want my children to stand up for themselves and for what is right. I need to lead by example. I decided if i dont like something, i need to try to change it.

Most of you (non ASD families) are not aware that many of the terms you use are very offensive, and ive never said anything for fear of embarrassing someone or upsetting them. It is not doing anyone any good not informing them of their mistake, its only because you do not know, that you make the mistake to begin with. So here it goes...


Be Kind: Part One -- Autistic vs. Having Autism

Using the term "Autistic" over the term "Has Autism" is very controversial in the ASD "community." I have tried hard to just realize that people who don't deal with ASD in their homes do not understand that they are being offenseive. But i cringe and automatically get defensive when you say that my son is "Autistic" or use the word "Autistic" in general. I dont feel like i should have to cringe anymore. 

So as i mentioned the term is very controversial in the ASD community. The people who use the word "Autistic" to describe themselves and/or their children, are the same ones who find it a blessing to "be Autistic." They get very upset when they hear mothers like me, who are sad, angry or upset about their child having Autism. But to THOSE people who find it a "blessing," they obviously do not live the same life i do. They are obviously able to function and communicate in a world where my son can not. To be "Autistic" is a blessing to them. In our home it is not. In our home it is a cause for heartache and a very difficult life for not only Jeremy and I but mostly our sweet Recker. Our sweet Recker is the one who has to endure this trial in his life. Yes, TRIAL. How can you consider not being able to communicate, having an extremely hard time being out in public places because of his ASD & SPD, the looks he gets for his stimming in public, how are those things BLESSINGS? This does not mean we would want to change him or love Recker more any other way, it simply means that Autism has made our lives extremely difficult, and challenging for Recker. He has to deal with things that no 3 year old boy should have to deal with.

We do not use the word Autistic to describe Recker. Autism is not WHO Recker is. He is so much more than that. 

First and foremost....

He is a 3 year old boy.
He is a brother, son, nephew, cousin and grandson.
He is a little blondie.
He is a comedian.
He is a cuddler, kisser and sweetheart.
He is a lover of water.
He is brave.
He is strong and fast.
He is a friend to everyone.
He is Recker.
Those are the things we use to describe him. 

He is not Autistic, he "has Autism." 

It may seem odd to you and that there is not really a difference. But just a few little words can make a HUGE difference. The way we arrange words can change the whole meaning of something and the way we look at and feel towards it. By using the terminology "has autism" it puts the person first before the disability or condition, and emphasizes the worth of the individual as a person not just a condition. 

For example cancer patients are referred to as "people with cancer" or  "people who have cancer" as opposed to "cancerous people." Do you see how HUGE a difference just rearranging your words can make? PUT THE PERSON BEFORE THE DISABILITY. 

Person-first language is a philosophy of putting individuals before their disability. As you will see, this is about more than just language; it goes deeper into our attitudes toward others and how those attitudes translate into action. The label or identification that one’s condition or disability receives from a doctor is just that: a label. It is a way of broadly characterizing a group of symptoms under a recognizable and universal description so that treatment and services can be provided. It doesn’t speak to a person’s value or abilities. However, historically those with disabilities have been characterized as broken or frail, which makes it easy to see the impact language has on how accepted individuals are in their communities. Society at large has used these labels as a way of marginalizing others’ potential and fitting them into a neat little box from which they will never break free (Snow, 2010).

Please be considerate next time you are speaking to or about someone with Autism. Remember that, their disability isnt who they are. They are someone of value and worth far beyond their disability or disease. 



Recker HAS Autism. He is not Autistic.






Snow, K. (2010) To ensure inclusion, freedom, and respect for all, it’s time to embrace people first language. Retrieved on March 3, 2011 from www.disabilityisnatural.com.


Thursday, April 2, 2015

My Sweet Boys...

My sweet boys...

There are soooo many things that I want for you. 

First and foremost I want for you to be happy. Nothing in this world means more to me than your happiness. As your parent it is so difficult to see you struggle everyday with these seemingly "small" things and it breaks my heart. If its this hard for me, I can't imagine how hard it is for you. 

I want you to experience the peace and clarity that come with being calm, still and quiet. 

Friends. I want for you to have friends. Friends who even though they may not understand everything about Autism, like you for who you are. I want you to have an unconditional friendship.

I want you to play sports, go on campouts, get invited to birthday parties, go to school with your peers, be able to tolerate church, be able to play at a park, read me your favorite book, and tell me how your day was.

I want you to talk. I want to know every thought that runs through your head. I want you to never be frustrated again because you can not communicate what you need. I want you to be able to tell me why you're sad, hurt, or why you're laughing and what is so funny. I want you to be able to TELL me everything and say whatever you want and need.


But until then...

I will be there when you're sad.
I will hold and squeeze you when you can't be still.
I will always be your number one friend.
I will take you camping and we will have our own parties.
I will read you your favorite books and I will teach you about Jesus.
I will always be listening and waiting to hear what you have to say whether it be with your own voice or not.

I will always love you. 











































Saturday, January 24, 2015

How REWARDING Is This Life We Live?



I was recently contacted by and old family friend, who explained that she is in school currently studying Special Education and needed to interview a parent of a child with special needs. She sent me a list of questions but the following one question stood out the most to me...

"On Being A Parent Of A Child(ren) With Disabilities..."
- What are the REWARDS?

This question stumped me.
Ive been asked a MILLION questions about having a child with Autism, 
But never before have I been asked what the REWARDS were.
I jumped right in and was honest but brief.
Because in that moment, on that day, Autism was not rewarding in the least bit.



This was my Response:

Honestly off the top of my mind there are not many “rewards” per say, but we have tried really hard to find some good in everything, which can be difficult but it helps! But I believe that having a child with disabilities has taught me to appreciate the “small” things in life. Something that may seem so little or unimportant to most, is HUUUGE to our family. For example: You child making eye contact with you, your child responding to their name, or initiating play with you. To us when things like this are done, we celebrate like they are huge, because to us they are!! 

Another “reward” is being able to help other newly diagnosed families! Through my blog, support group and social media I seem to get calls weekly from friends, family or acquaintances asking if I could help their friend or family member who has a child that was recently diagnosed, and they feel so lost and confused. I love being able to help other mothers who are lost like I was. Luckily I had six years of experience working in a self contained special education classroom, before Recker was born, so I felt blessed to have the knowledge and training that I did when he was was officially diagnosed. I can not imagine how difficult it would have been to learn of this diagnosis and all these words coming out to the doctors mouth, (DDD, AZEIP, IEP, IFSP, ABA, BIP, etc..) seems like a foreign language. Well that is the reality with most families who are newly diagnosed. I can never be more grateful to the teacher I worked for, she taught me so many extremely valuable things that i still use and implement in my home. Because of my knowledge and experience I love sharing and helping others in anyway i can, and they need.


After submitting all my answers, I jumped onto an Autism Support Group I started last year to ask the same questions to everyone in the group. These are several of their responses from a group of  incredibly wise and strong women....


"The way I appreciate the simple things in life. Continual expansion of my capacity to love. The empathy I've developed for others. Learning to laugh in the good and bad times. I feel like my heart has grown 3 times in size with my 3 babies. And the depth of my eternal perspective. Keep in mind I had shoes thrown at my head today, a picture frame and a CD player.... So I get it being hard for you to answer that question. Gives us patience and understanding of others who have struggled with similar situations. Not judging a mom or child by whats on the outside. Giving the benefit of the doubt. Humility, and appreciation." -AB

"I feel being a parent to a child with a disability has made me a better parent. Not that parents of a NT child aren't good parents. It's that I am more aware. More involved. More determined to find answers or help or try something new. I know being a parent to my Carter changed the path I was headed in my parenting." -SD

"I think I would wholeheartedly agree with all of these comments. Some lovely and very true sentiments. Additionally, I take nothing for granted. Every word spoken by both my child with autism and my other without, is cherished. Also, my capacity for love is endless as well as being able to handle hard things. The sacrifice and work we've done for my son has helped me know I can face a trial, I'm tough and will always fight." -GM

"I appreciate the milestones even the small ones, so I appreciate little moments in life that make it that much sweeter. I'm am rewarded with a smile or body language that can tell me so much more than words. It makes my heart melt" -LJ

"I have been humbled. I appreciate the small steps towards something to be achieved instead of the huge accomplishment of achieving it. Finding the joy in the small things. He has taught me that it is ok not to be perfect. He has taught me that I can't do things for the glory of everyone else saying I did a good job, that I have to do it for me. He has taught me to love unconditionally, and appreciate the what the world gives me. He has taught me to be thankful and aware of my blessings. The education I have received by being his parent far outweighs the education college degree that I have-that is the reward. God entrusted me with him, so I have learned that I am enough even when I don't feel like I am. I listen to other parents compete and brag about their child being the quarterback or the valedictorian or going to the prom, etc......he has taught me that those things are not really important-that being the best you can be today is enough. He has taught me that it doesn't matter what others think of me, I can be content with myself for who I am. I love my son, as he has really taught me what is important! He is my reward!" -TB

"Gives us patience and understanding of others who have struggled with similar situations. Not judging a mom or child by what's on the outside. Giving the benefit of the doubt. Humility and appreciation." -JF

"In addition to the above, I would add that I have been able to see the world in a different perspective and am (possibly) more aware of the needs of those around me. I have met a great group of kids, families and adults through this process that I never would have other wise. I have learned to appreciate simple things and know that we all have our own path (even if it is leading to and from the same places - pre-mortal life/post-mortal life)." -KP

"Where do I start? I find joy in every small gain she makes. I have compassion and love for parents and children that have bdeal with disabilities that I never had before. I feel my older children are more kind and aware of others with disabilities, and they also have gained so much patience from having Juliet as a sister. I feel like my husband and I have grown closer because we are a team and we know we really have to rely on each other to get through this. I'm actually glad you asked this because we just moved and Juliet has been having a really hard time adjusting to the new house. Lots of screaming and whining for no apparent reason and I've been going crazy. So it's good for me to remember all the positive." -JF

"So so happy to read all of these wonderful comments this morning! This may sound really dramatic, but the thought has crossed my mind that my two have actually saved my life. I was on a very self-destructive path. I had a horrible body image issues and eating disorders, but in my journey to "help" them I have had to choose to change the way I think about myself, the way I eat, the way I live my life everyday, because they don't have that capacity and I have to create a healthy environment for them. It has really been rewarding to see how much my husband and I have matured spiritually, emotionally, and mentally by being their parents. It rocks our world and forces us everyday to see the world through new eyes. I know I would not have been able to change without them." -JM

"The reward can be as simple as the everyday lessons learned." -SB

"So so happy to read all of these wonderful comments this morning! This may sound really dramatic, but the thought has crossed my mind that my two have actually saved my life. I was on a very self-destructive path. I had a horrible body image issues and eating disorders, but in my journey to "help" them I have had to choose to change the way I think about myself, the way I eat, the way I live my life everyday, because they don't have that capacity and I have to create a healthy environment for them. It has really been rewarding to see how much my husband and I have matured spiritually, emotionally, and mentally by being their parents. It rocks our world and forces us everyday to see the world through new eyes. I know I would not have been able to change without them." -JM

"Get a glimpse of the pure love of Christ. Experience charity daily." -KW

"It's given us to look at people honestly, and evaluate their actual skills and abilities, and respect those skills and weaknesses within their own personal status. It teaches us to see that peoples weaknesses have nothing to do with us, which in turn helps us to allow them to be themselves and accept them. It teaches us to place appropriate expectations to each individual's needs." -NF

"Hands down EMPATHY for others and their struggles, seeing absolute beauty or appreciation in the small things in life that are often over looked (a hug from a toddler, a child asking his own mother for help, watching my daughter without an ASD try to be like me, a rare -time stopping- random- I LOVE you without needing anything in return from my tween who is afflicted with ASD, listening to my primary class give EVERY.SINGLE.DETAIL of their lives and feeling grateful for their ability to do so), feeling an incredible amount of responsibility and thankful that God thought he could mold me over time into someone capable of helping/raising my children (with and without ASD... but especially with... since most of the time I question my own abilities). Seeing the wisdom and passion that everyone on here has for their own children and being able to be influenced positively by wonderful women like you. Oh and a thicker skin and better sense of humor!!! You HAVE to be able to laugh sometimes... Way better than burning down the house! LOL" -AP

Did you notice any recurring themes and words while reading these? Almost every single one of these women mentioned one or more of the following in their answers...

EMPATHY
PATIENCE
APPRECIATION
HUMILITY
GRATITUDE
PERSPECTIVE

Its very easy for anyone of us to list all of the CHALLENGES,
 but how refreshing it is to hear of the 

REWARDS  

We are receiving from raising a child with a disability.


I'll be the first to admit the majority of my days are not surrounded by these "REWARDS."
But is that because I am not looking for them? 

Am I focusing all my attention on the negativity that is constantly going on in a whirlwind around me, that I'm unable to recognize the rewards or blessings of this life we are living. 

It is not an easy thing to sit and think about. Especially for those families who are newly diagnosed (or it still feels new--even after years), it can seem like there will never be an upside to this terrible thing that has invaded our homes, that has torn through our hearts and minds like a tornado, this thing that has "stolen our child." To those who are feeling this way, I promise things get easier, It may take awhile, but I promise you'll find your sliver lining somewhere, someday. 

Do the hard thing, count your Rewards.