Wednesday, September 18, 2013

Alone

Two very personal things you should know about me...

First, for some reason my entire life i have always assumed things were too hard for me. Honestly i gave up easily, or i wouldn't even try because it seemed too difficult, or i thought i would fail at it. Call it lack of self-esteem, cowardice, lazy, stubborn. I would say, yeah i agree, at one point all of those things applied to me, they applied to my reasons for not trying, for not "jumping", for lack of confidence. 

Second, by nature Ive come to learn and stubbornly accept that i am a very controlling person. Not in a way that i like to control people, but in a way that i like to control everything in my life. I hate surprises, i like to plan and make lists, i don't like when things don't go the way the way i thought they would, spontaneous twists i wasn't expecting are hard for me to handle. When i know i can not control my situation, or the circumstance or outcome, sometimes i will just not attempt it. I hate not knowing how things will end up. New things, they're very hard and extremely scary for me. 

Now onto my point for sharing these humiliating less than attractive attributes....

Recker has changed my life in so many ways. He has been forcing me from the beginning and i mean very beginning to work through these "faults" of mine. First of all, it was a surprise when i found out i was pregnant. I could lie and say i was so excited and happy. But like i mentioned before, he was a surprise...i don't handle surprises, change or interrupted plans very well. I didn't know how i would get through it, i didn't know how to take care of a baby, what kind of mother i would be, how we would afford it (we weren't planning on a baby), when would i finish school, etc....But this wasn't something i could just back out of, not try, and ignore. I did it. I had my baby, he's now a toddler, and we're both alive and well. I made it through, despite my assumptions that i wouldn't.

Still not convinced i could do hard things, i'd drag jeremy to every doctors appointment, meeting etc... I didnt think i could do it alone, i thought i needed someone to help me through every hard time. I never believed i could get through things all by my self. 

The hardest day of my life I've had yet, i found myself having to go through it alone. I knew i would have to do it alone, jeremy wasn't able to get off work. I knew this ahead of time and had time to plan and prepare myself to do it alone, it wasn't enough time. He told me over and over that i could do this, that i would be ok and that I'm strong, i just didn't believe him.

I pulled into that parking garage, ALONE. 
I got my baby out of his car seat and carried him into the doctors office, ALONE.
I sat there while the doctor said those dreaded words, ALONE. 
I was forced to go through it, ALONE. 
I survived it, ALONE. 
As sure as i was that i wouldn't, i survived.
I did the hardest thing of my life, i did it ALONE.
I didn't need someone there to help me. 
I was able to get through it.

There have been countless other less significant (but not unimportant) experiences that have showed and proved to me over and over again, that I AM STRONG. I continually am forced to "let go" and give up control, to have faith that everything will be ok, that i will survive, that I really CAN do these things that seem near impossible. 

This last month has been one of those times. It has definitely been one of the hardest i have ever had. Without going into boring detail, Jeremy's work has taken him out of town monday-friday, every week until next April/May. We only get to be with him on the weekends. I have been forced to be a "single parent" during the week. I was so scared. I was barely hanging on with jeremy here, helping me everyday, how am i supposed to do it without him? Anxiety ridden and absolutely terrified of failing, this was just too hard to imagine getting through alone. I kept telling Jeremy, "NO", that he can not leave, he needed to figure something else out. Then one night, i was laying in bed thinking about my boys, jeremy, and all the trials and hard times i've been through in my life, and realized, I got through them, i survived, i was strong enough. It's been hard, really hard having jeremy gone, but mostly because we miss him, so badly. I have come to realize how strong i really am, as cheesy as it sounds...

I have FINALLY realized I CAN DO HARD THINGS.

Doubt used to be constant in my life, but now its rare. 
When it does creep in, i look at all the things i have done. 
All the terribly difficult things i have over come.

I am so grateful for the trials ive gone through.
They have helped me overcome one of the more difficult things ive struggled with deep within, DOUBT.

I would also like to make sure that it is not misunderstood, yes i have gone through many trials "alone", but i have had the support, STRONG & unyielding support of my family. Jeremy is my rock. He is always there when im doubting myself and my capabilities. He always knows what i need to hear. I definitely know this parenting thing would be a LOT harder without him by my side. Im so grateful for him. I can not begin to share the ways that my parents and siblings have gone above and beyond, to help Jeremy and I. I am constantly overwhelmed by the love and support they give me. There is nothing i will ever be able to do to repay them for what they've done and continue to do for me.  I have come to learn that i CAN do things by myself, and alone, but that i don't HAVE TO. The little things they do for me, that to them are just something so small, but to me it means the world. My family as crazy as we are (if you know us well, you know what i mean when i say crazy), we are full of so much love for one another. I am so blessed. I love you all Mom & Dad, Blake & Chloe, Kaitlyn & Brian, and Haleigh & Scott....THANK YOU.



Thursday, August 15, 2013

Exhausted.

Ive mentioned it before that i go through phases or months where things are great and I'm fighting and i have this insane energy and positivity that all this fighting is going to pay off in the end. But then there are those times when i take a step back and look at the ABSOLUTE LACK of progress the past 2.5 years and wonder why i waste my time and mental and physical energy fighting a fight i cant win. There is nothing i can do that will rid Recker of his horrible villain that is Autism.

Im exhausted. Mentally. Physically. EMOTIONALLY.
There have been times when i have thought to myself that Autism might literally drive me insane. 
I am anxiety ridden.
I dont sleep. I have Insomnia.
I lay awake every single night praying and trying to figure out what the secret is. 
WHAT CAN I DO?! HOW CAN I CURE HIM?

I do research and read medical studies and try to decide which one of the following treatments will be the one that finally gives recker the life he deserves. Which one or combination of several will finally give my my son back. 

1. Allergy Desensitization
2. Flavonoid formulation for allergy like symptoms and brain inflammation
3. Anti-fungal treatment
4. Treating Biofilm: chronic gastrointestinal issues
5. Chelation: removing toxic metals
7. Enzymes for digestive support
8. Enzymes coupled with specific ASD diets
9. Helminthic therapy
10. Fixing Leaky gut syndrome: using probiotics
11. Intravenous Immunoglobulin (IVIG)
12. Low dose naltrexone (LDN)
13. Medical Marijuana 
14. Melatonin therapy
15. Methyl-B12
16. Neurofeedback
17. Neuroimmune Dysfunction treatment with Antiviral therapy
18. Nutrigenomics and supplements
19. Psychotropic medication
20. Nutritional supplements
21. Transcranial Magnetic Stimulation
22. Treating Microbiome/biome and cysteine deficiency
23. Using stem cells
24. Treating thyroid and endocrine disruptors
25. Hyperbaric Oxygen Therapy and "congray"
26. Treating a cerebral folate deficiency
27. Changing environmental triggers
28. Speech-language Therapy
29. Implementing the Kaufman speach to language protocol
30. AAC: Augmentative and Alternative communications
31. Proloqquo2go
32. Transcranial direct stimulation
33. Music is nature and "congray"
34. Community based speech language pathology
35. Joint action routines (JARs)
36. Specific carbohydrate diet (scD)
37. Feeding therapy
38. Fermented foods
39. Applied Behavior Analysis (ABA)
40. Camphill schools
41. CARD eLearning
42. Drama Therapy
43. Floortime center
44. Integrated play group model
45. Integrative educational care
46. Integrating ABA with developmental models: MERIC
47. Relationship development intervention
48. Selecting the best iPad app for my child
49. HandHold adaptive
50. Camp Ramapo
51. Holistic approach to neurodevelopment and learning efficiency
52. Houston homeopathy method
53. Homotoxicology
54. Living Energy
55. Using Theraputic grade essential oils
56. Osteopathy
57. Craniosacral and chiropractic therapy
58. Dance/Movement Therapy
59. Yoga and martial art therapy
60. Therapy dog/animals
61. Aquatic Therapy
62. Reducing toxicity in our environment
63. Art Therapy
64. Berard Auditory integration training
65. Music Therapy
66. Occupation therapy and sensory integration
67. Sensory learning program
68. The davis model of sound intervention
69. traditional and indigenous healing
70. Vision Therapy


These are just a FEW. Literally there are THOUSANDS.
I shouldn't have to know these things. 

Besides a few friends I've "met" and vented with online, no one else i know even understands what any of the above list means. Those words aren't in my friends vocabularies. 

I am having a woe is me pity party over here. 
But sometimes i just wish someone else understood what i go through. 
How hard Autism really is. I would NEVER wish it upon my worst enemy.

Not only do i have to worry about keeping my house clean, frugally grocery shop, cooking dinner, making lunches for my husband and son, at least trying to attempt to do laundry, paying bills, and trying to be a decent mom to my boys, on top of that i am losing my mind about that above list, i am coordinating schedules between all of his 5 specialist doctors, therapists, DDD support coordinator, and school, trying to figure out how my husband and i will both be able to go back to school when we need his insurance from his work. 

Its sad that i am jealous of people whose biggest worry is trying to decide which dance or karate class to put their child in, trying to decide between charter or public schools, those whose biggest worry is how to calm their "cranky" baby, i wish my only worry in life was whether or not my child was eating enough nutritious organic food and wearing the trendiest clothes.  

I guess im just trying to justify those times when i feel like i deserve to "check out" to give up. Somedays i just want to close my eyes and sleep the day away. Not because im tired (which i am because i can not sleep) but because i honestly can not think straight, i feel like my head is so foggy and running at million thoughts per second. This will probably sound crazy (and its probably the sleep depravation talking) but i wish i had a little secretary up there in my head. Someone who could organize my thoughts and throw out the negative ones and prioritize everything i need to do.

I hate feeling out of control.
And my life spun out of control when Recker was diagnosed 2.5 years ago and it hasn't stopped spinning. 

The worst part is knowing that there is a chance he could get better. There could be some sort of treatment that helps him improve. 

Sometimes i wonder if it would be easier if a doctor told me that Recker will be this way the rest of his life. That no matter what i did, he will not improve. 

I think i could finally relax and stop stretching myself so thin worrying about what i need to be doing to "FIX HIM". I could mourn our loss of the future we planned and hoped for him, but we could finally live our lives. I feel like everything else in my life has been paused until i can figure out the combination of treatments and therapies that will finally "CURE" my son.

I feel like i am going insane.
I blame myself daily and beat my self up mentally every single day that goes by that theres no progress.
I feel like i have failed him.
Feeling like a failure day after day, month after month, year after year. 
I am just so tired.
I'm exhausted.



Wednesday, June 26, 2013

Boys who can talk.


The absolute number one hardest thing we struggle with when it comes to Recker having ASD, is his inability to verbally communicate, he's non-verbal.   Plainly put, he can not talk.

When Recker was 11 months old he said his first word, "dada" followed shortly by "momom." I remember it vividly, the moment i first heard that word "momom." He and I were sitting on my bed, he was in jammies (seriously little guys in two piece jammies, there is nothing cuter). I was reading and he was looking through one of those drool proof baby photo books (you know the puffy ones?) and he said it. That feeling was incredible. Looking back i wish i would have reveled in it, would have made the moment last longer. Had i known i wouldn't be able to hear it much for longer, I'm sure i would have. Recker went on the next month or so learning new words: 'dada', 'momom', 'baba', 'no' and 'don't'.

The last word i remember him saying was "don't." He was yelling at Jeremy in my parents living room because we were leaving and he was picking up all of Recker's toys and putting them away.

"Don, Don, Don, Don, Don!" I remember standing on the other side of the couch laughing.

But he stopped. All of the words stopped. He changed.
Today, two and a half years later he still can not speak. 


But I've learned that does NOT mean he can not communicate with us.

I feel like i have had to go above and beyond to learn how to communicate with Recker. To anyone aside from Jeremy and some close immediate family, it may look like we have NO idea what Recker is "saying" or "telling" us. And some of the time that is true.

I have learned how to decipher different looks he gives me.
His body language.
The pitch and tone of his squeals.
Each different one tells me something.

I constantly am 5 steps ahead of him.
I HAVE TO BE.
Have you seen how quick and sharp he is?

The thought that my son needs or wants something and can not TELL me. It KILLS me. I hate how hard it is for HIM.

The other day he came running and screaming into the room and had a big fat bloody lip. I was begging him to tell me what happened. He just looked at me with the saddest eyes, not because he was hurt and bleeding, it was different. He could not tell me what happened. He wanted to and couldn't. I started to cry with him. The fact that i will never know what happened to him, how he got hurt, is so hard for me.

Im haunted daily by the thought that  even though he is surrounded by enormous ammounts of love and attention, Recker probably feels so alone.
It is such a hard thought to grasp and handle.


I guess the reason i am writing about this is because it has been on my mind a lot more than usual lately. Something happened recently that i haven't been able to get off my mind. Up until a week ago i couldn't even talk about it. Luckily my sister is always there and completely understanding and more of a cry baby than me, so i know when i start sobbing i wont be alone.

So Jeremy and I were down in our community yard hanging out while Recker played with his cars. All the neighbor boys (ages 2-5) were out and at one point one of the boys parents called him inside for a minute. When he came back out, all the other boys had gone back to their homes. It was just Me holding Ezra, Jeremy, and Recker...

The boy asked "Where did everyone go?"
Jeremy replied "They all went home buddy."
He looked sad and disappointed. So i said, "Recker would LOVE to play with you!!"

Then came this...

"Well i just only want to play with boys who can talk."

Jeremy looked at me and whispered, "Did you hear that?"
Of course i heard it. I FELT IT. It pierced me to the core. I will hear that forever.

I sat there for a minute trying to collect myself so i didn't bring attention to what was just said. I didn't want to make the boy feel bad, but at the same time i was furious, sad, sick....mostly in shock.
But i had to go. I had to go anywhere. I couldn't be THERE any longer.
I walked home with tears quietly streaming down my face.

I curled up on my couch and just cried for what seemed like hours.

Recker and all his friends were always at an age where Recker's inability to speak wasn't very noticeable, or even acknowledged. He is older. They're all getting older, and it is obvious that something is different with their friend Recker.

Obviously the boy wasn't trying to be mean to be rude or mean, he was just being honest.
This was just the first time (of many to come, I'm sure) that we've had to deal with this. I am working on putting together a packet of some sort to give to parents and teachers to help their young children understand Recker and explain why he does some of the things he does and why he can not talk, to explain why Recker is "DIFFERENT, NOT LESS". Hopefully this will help raise awareness with children, and they can start learning acceptance and tolerance at a young age...Stay tuned for that information. Hopefully i can get it all together within the next month or so!

Tuesday, June 11, 2013

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 Polite: 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, May 23, 2013

Two Years and Counting...

Its been two years.
Two very very long and extremely difficult years.

That day is still so fresh in my mind, in my heart. 

I still get that lump in my throat when i think about it.
I still get that lump in my throat when i hear "Keep Breathing" by Ingrid Michaelson. 
It was on repeat when i got into my car. 
When i sat in my car, in that dreary parking garage, sobbing. 
This song played and played and played. 

That day changed my life forever. That day changed our little family's life forever.

I had no idea what was ahead. I had no idea how hard these next couple of years would be. I had no idea how i would have to somehow and somewhere find the strength to be an even better mother and wife than i had been before. I didn't know that i would permanently be stuck on this emotional roller coaster that is being a parent of a child with Autism. I didn't know that i would cry myself to sleep every night for months, then be super strong and fine for a few more months, then back to the tears. 

How could i have known?
How could i have known how hard this would be for my son?

Oh how hard it is for Recker. 
My sweet precious boy. 
How hard the past years have been for HIM.
How hard and sad it must be to not be able to communicate with the ones you love. 
To not be able to tell your mom and dad that you are tired, hungry, that your belly hurts....
How hard it must be for him.

Since that day two years ago, i constantly feel like I'm suffocating, like i cant breathe.
I feel this intense sense of URGENCY. That every second I'm not trying to find a way to help my son speak, to help him play with his friends, i feel like I'm losing him. I feel like every second that goes by, i lose a little part of him, that I'm a failure. I know its not rational. I never said i was a rational person. All i know is that i have had a lump in my throat and felt like i cant breath, for TWO YEARS. 

This has changed me. 
In different ways. Good and Bad.
I have never been a jealous person. I am now. 
I have never felt hardened and bitter. I do now. 
I have never felt helpless. I do now.
I have never been able to speak up for myself. I do now. 
I have never really truly relied entirely on faith. I do now. 
I have never been strong. I am now.

Honestly...These past two years have been an emotional hell.

I cant count the number of times people have praised me and applauded me for how i have handled "everything."

I feel like such a fraud.
I am a fraud.

Of course i am strong and collected when you see me.
No one really wants to know how you're "REALLY" doing. They would regret it immediately.
No one wants to hear how hard it REALLY is. 
How hard on your marriage it is.
How it makes your faith waver.
They don't want to hear about the endless sleepless nights stressing and worrying about his future.
They don't want to know that most of the time i am fighting back tears. 
No one wants to hear about all the thousands of doctors appointments, therapy sessions, and IEP's.
They don't want to hear about me and my husband holding and clinging to each other while sobbing because we don't know how to help our son.


They want to hear how strong you are.
They want to see you standing on your feet ready to "FIGHT THIS"
They want to see you out and about "keeping it together."

That isn't reality.
At least that isn't my reality.


This is the hardest thing I've ever done. 
Autism is hard.
Sometimes it feels IMPOSSIBLE.

The only way I've been able to get through it is Recker.
That quirky personality.
Those moments where he drops what he's doing and runs over to me, bear hugs me and kisses me.
His eyes. They're so deep. You can see and feel his heart through his eyes.
His need to cuddle and nuzzle us constantly. 
When he grabs your hand to hold it.
Those moments when he learns something new and gets that look in his eyes, like it clicked.
That contagious laugh.
His intense curiosity, that usually gets him into more trouble than good.
His love to help in the kitchen. 
How hard he tries to play with his friends. He's learning, and trying so hard.
Just his love. His pure love for everyone.

He is perfect in my eyes. 
I love him more than i thought i could love another person.

Heres to another two years. Lets pray they are easier than the previous two.




{I write this completely vulnerable and exposed...please be understanding}