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everyday stage fright

When I was in 9th grade I decided I wanted to try out for the school musical.
I was severely shy back then, but I felt this desperate need to be part of that world where attention and praise were directed center stage.  I had my friend, Noelle, play the piano for me.  I had chosen to sing the theme song from The Land Before Time. The day came for my audition. I had never been so nervous in all my life.  I walked up onto the auditorium stage.  A spotlight was shining right into my eyes.  I couldn’t even see the panel of teachers that were there to listen, which was probably good.  I had practiced a hundred times in front of my mirror at home.  I should be ready, I kept telling myself, but no matter how hard I tried I could not push down the horrific anxiety that was building up inside of me.  I was a having a physical reaction to it…I was shaking, sweating, and when I began singing the song I’m sure they could barely hear me.  Once my verse and chorus were over, I had never been so relieved to get out of that room in my life.  My mind sensed distress and when presented with fight or flight, I easily chose flight.

I feel like with time and experience I have been able to overcome my shyness and I enjoy socializing. However, I still consider myself to be an introvert, because I gather my energy from being alone.  That same anxiety I felt the day of that audition I have felt on more than a few occasions in my life:

  • My middle school district spelling bee, where I choked under the pressure and misspelled the word tobacco.
  • The first few weeks as a brand new missionary in Spain I was deathly afraid to speak Spanish for fear of saying things incorrectly.
  • Going on my first date ever at age 24…major anxiety
  • and the list could go on and on, haha.

When I think about each of these events they all have a few things in common. I was under prepared and I felt I had no control over the outcome.

Over the past 3 years, I have felt that anxiety more frequently than I would like .  Now it can be the simplest of everyday errands that causes me to break out into a cold sweat.  Going to doctor appointments, the post office, small shops where strollers don’t fit, restaurants, and even mundane tasks like grocery shopping or going to the park could send me into a panic.  My kids can be so unpredictable and because they don’t understand language it is practically impossible to control them in public situations.  I mean, to all my real friends out there in cyber space, when is the last time you actually saw me in person?  I pretty much became a hermit. My one saving grace has been that my sister moved down to go to college and I trust her well enough to watch them so that Adam and I can get out of the house now and then. Thanks Lindsay!

-It is pretty shocking to your confidence when you don’t trust your children in public.  However, things are slowly getting better.  Since we have changed their diets, cut-out screen time, and started some therapies there is a different expectation around our house. We expect them to change and succeed and now we see miracles taking place everyday…

-I no longer have to put the 3-foot, 50lb Max in the shopping cart at the grocery story.  He is able to walk beside the cart and stay near me, even in clothing stores, which he dislikes immensely.

-Dempsey is responding to her name more regularly.  She know when I say no that I mean no.  She may not like it and even scream and cry, but at least she stops what she is doing.

-My sister is moving out(ahhh), but I finally feel confident enough to call in a high school girl and teach her how to help me out when I need it.

-Max is able to make it through all of his church meetings with little to no incident…we are still working with Dempsey on Sacrament meeting, but she has come a LONG way a she is able to stay in nursery for the full two hours now without confrontations with the other toddlers(baby fights, ha!)

-When we tell them it is time to go to bed they file up the stairs like little ducklings and don’t even throw a fit…we are amazed every time.

-When they are in the stroller now they are content to just observe and ride. For instance, I took them to Bath & Body works the other day and parked inside the store next to hundreds of colorful bottles sure that they would want to get out and touch everything or throw a fit trying, but no, they just sat there for a good 10 MIN while I casually browsed the small shop for teacher appreciation gifts and didn’t make a peep…seriously, you have no idea just how incredible that is to me.

I am more prepared to be their parent. I am slightly less concerned about what other people think about their behavior. We still have a lot to work on before we test their resolve to wait in lines at Disneyland, but just to have a little more peace in my life is priceless.

Oh, and if you’re wondering, I made it into the chorus of the musical, but decided to drop out because well, I wanted to be a star after all…and now when I go out my kids are getting me all the attention I ever wanted! ha!

 

the good stuff

That last post was pretty heavy. I have a wise friend from college, who was also blogging about some life-changing trials and she said it perfectly:

I don’t feel guilty about those sad and tender years anymore. Life is designed to teach us it’s most important lessons through hard and painful trials. Everybody has something, don’t they? If it’s not one thing, it’s another, and once we know better, we do better. That’s all that’s asked of us.

I’m not saying it’s going to be smooth sailing from here on out, but now that I have some perspective I just know the good days will out-number the bad.

About a month ago it was just a regular old Monday and put my kids in the car to go to the gym.  I chose that specific gym for the childcare, but it soon became apparent that they were ramping up their membership.  At times there were only 3 or 4 attendants to 60+ kids.  I tried to come at off-peak hours, because I knew that Max and Dempsey would become easily overwhelmed with that many children in a small space with a limited number of toys.  On this particular Monday I was half-way through a two-mile run when I got the dreaded tap on the shoulder. I pulled out my earbuds and expected the worst.  Well, it doesn’t get much worse.  Dempsey had bitten another little boy on the arm, who had a toy she wanted, and drew blood.

I was mortified.

They tried to reassure me that these kind of things happen and that they are sure it was an accident, but I could tell that they just wanted me to take them and leave with the idea that maybe we shouldn’t come back until Dempsey could be trusted.  Could I blame them? I didn’t get to talk to the parents of the boy who had been bitten.  I couldn’t trust Dempsey either, so I didn’t really want to put her in that situation, even though she doesn’t really know any better.  I took the kids and hurried them out to the car.  I just sat there, a sweaty mess, and cried.  My one hour of sanctuary a day was gone.

Pity party over. It was the last straw. I think I started changing the kids diet that very week.  From what I have been learning the brain and digestive system and linked.  You cannot eat something without affecting everything. The most dramatic examples are someone getting drunk or taking drugs, no longer has all their faculties.

Now I can only speak for my children and I don’t claim to be an expert on nutrition.  When a baby’s brain is developing you don’t start feeding it solid food until after 6 months or longer because it’s digestive system is not ready to process anything other than breastmilk.  Children with neuro-challenges have underdeveloped areas of the brain and in turn their digestive system is not ready to process certain foods. By eliminating these foods, you allow the brain to stop fighting the gut so much and begin to focus on developing how it should.  If you want more info on this I recommend the book Disconnected Kids

For us, this meant taking out all gluten, dairy, and soy from the kids’ diets; looking for more organic produce and meats; cutting sugar, processed food, and making more things from scratch; adding in supplements.  I started watching documentaries like Food Inc., Hungry for Change, Forks Over Knives, Fat Sick & Nearly Dead and for a few weeks I was pretty afraid to eat anything.  It was a lot to take in and I wasn’t sure I could do it.  Screen time was also minimized…no tv, computer, phones, tablets. (30 min a day was allotted or you could save that up and watch a movie on the weekend) I was afraid my kids would fight me every step of the way.

They did…but you know what? It’s easier than you think.  Once you start reading labels and looking for this kind of food, the resources just start coming to you.  It takes effort.  It takes persistence.  We have to do it as a family, because really, how can you eat something in front of your child that they can’t have? Luckily my kids are sooo selective at this point that I have mostly tried to replace what they do like with viable substitutes.

Max is totally fine with homemade chicken nuggets made with GF flour.
Dempsey loves coconut milk and yogurt.

They are eating more fruits and I am trying to hide more vegetables.:)

THE RESULTS are in…

After only a month of changing their diets and not having screen time we have noticed BIG things and more subtle things.

-They are more affectionate with us.  They actually initiate affection and want to give us hugs and kisses which is very new and VERY  welcomed and makes my mommy heart just swell.

-They are more present. Not so much in their own worlds. More engaged. Respond quicker when we call their names…amazing if you aren’t used to it.

-They are making better eye-contact which is huge.  I can tell they are able to observe better and are more aware of and can acknowledge other people around them.

-Max especially has shown an interest in engaging with other children.  He is still unsure what to do with them, but he wants to be around them and part of the group.

-Dempsey is understanding more phrases and mimicking more words. She is able to calm herself down/regulate much quicker than before.

-I’ve seen Max point and say ‘this one’!! This shows such a deliberate use of speech and not just the echolalia(repeating what we say) that he has been doing.  This almost had me falling off my chair.  I know things like this are so small to most parents, but over here we celebrate the tiniest of changes.

I’m convinced that eliminating these things has made a world of difference for my kids already.  There’s no going back. The hardest part is running interference when going to church, parties, and school.  At least I’m getting them used to it while their young before they start complaining about all the food they are missing out on.Need food and recipe ideas? Just search Pinterest for: gluten free, casien free, autism diet

The evolution of perfection.

If anything, I want to document my experiences with my children honestly.

My life has checked most of the boxes on a very traditional path.  I don’t want this to sound negative at all.  Sometimes I feel like tradition gets a bad rap.  As children we naturally learn to mirror the behavior of those around us.  I learned quickly that to feel validated, happy and to bring happiness to others there were certain things I should do with my life.  Perfect grades, check. Full scholarship, 4-year degree, check. Full-time missionary service, check. Marriage, check.  All of these events are integral to the person I have become. I learned a great many things along the way, have many amazing friends,  and especially my marriage I consider to be pivotal in changing the way I see myself…Adam is the love of my life.

I anticipated motherhood as another milestone from which I would gain great joy.  I was right.  Maximus Riley came into the world beautiful and healthy.  As a new mother I was a amazed at my inner fits of paranoia.  I never knew I could be so nervous to speed in my car. I would continuously check if he was breathing.  People tried to explain it to me, but until I held my own little baby and felt the incomparable sense of responsibility and love awaken in me, it is impossible to understand.

Everything was perfect.

Perfect… a word that has new meaning for me now.

Max was developing amazingly.  He was eating well. He was hitting all of his developmental milestones: tummy time, holding head up, rolling over, crawling, and even walking by 1 year.  He could understand many things that we said to him.  When we would name objects, people, or places he would look with his eyes or point.  He even had a handful of words.  He was happy, expressive, active…

Then at about 15-16 months old something changed.  At first he just seemed a little fussier and maybe withdrawn.  I tried to tell myself that he was just adjusting to his baby sister, Dempsey, coming home.  However, I knew in my gut that it was more than that.  The first thing I really noticed is that I couldn’t get him to point at things anymore.  Then he wasn’t even saying the words that he knew before and he wasn’t making much eye contact.  Within a matter of months he had totally regressed in all of his language and social skills.

I can look back on it now and see it all so clearly, but at the time I was in denial.  I had a newborn. We were trying to get back on our feet financially from recent layoffs. So the the next year was spent coping.  As Dempsey began growing she was not hitting her cognitive and social milestones either.  Early intervention and evaluations by experts had given me very little information as to why my children were like this and what I should do.  Doctors said they didn’t want to give either of them a formal diagnosis, but with their early emerging symptoms they both seemed to be on the autism spectrum.  I immediately wanted to blame myself.  You see, I have epilepsy. During both pregnancies I had to take anti-seizure medication.  It had warnings on it, but I naively just took my doctor’s and neurologist’s advice that it would be worse if I had a seizure while pregnant, so I should just continue taking the pills.  Now of course, it can never be proven that medication was the cause of anything, but I just want you to know that as a mother I cannot keep my mind from going there and feeling that guilt, responsibility, and wondering how our life maybe different if I had done things differently.  Perhaps it was immunizations?  Maybe it was the result of toxins in the environment and in the food we eat? My feeble human mind wanted an explanation so badly, but my heart didn’t want to face the reality.

I had diverged from my perfectly traditional life path.

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

I couldn’t see down this path.  I was in a very dark place. Every time I looked at my children and thought about their unknown future, it was too much. I would break down and become emotional.  I would lash out at the other important relationships in my life.  I was at times very self-destructive and self-deprecating.  I very literally had to grieve over the future I had envisioned for my children and what their reality was now.  Would they every really SEE me?  Would they call me Momma and know what that meant?  I was trapped in my own sadness and fear. Something that fed into this fear and grief was recalling growing up with my younger brother Tori, who has special challenges of his own.  I remember very clearly how difficult it had been for my own parents as they struggled to understand and deal with Tori’s developmental issues. The thought of facing years of aggression, anger, and unpredictable behavior left me paralyzed and depressed.

I cannot name the precise day or moment when the grief began to subside and I was able to start living in the here and now.  Much of the credit can be given to my amazing husband, who continually supported me, encouraged me, & reassured me that those babies needed me and I needed them. He loves them so purely. He has always held so much optimism and never compared them to other children.  We often had conversation about how it felt like Max had left us.  He was a totally different child and we missed the boy we knew for 16 months.  After what felt like years of tears, prayers and feeling like I was in survival mode, I was finally ready to take some action.

I began making myself my children’s expert on their brains, nutrition, physical bodies, developmental stages, and behaviors.  I started finding other parents who were going through similar issues to give me some direction.  I started looking around my town to see what resources there were outside of the government funded programs.  When you know better, you do better, right?  At least for me, if I knew better I couldn’t live with myself if I didn’t do everything I could to help my children live up to their potential during this life.  I signed up for this gig, so I needed to earn the title of Mother.

I feel incredibly blessed. Locally, we have been working with The Brain Balance Center. The minute I went to their open house and they started talking about neurodisorders and how the brain works it was like they had been with me from the beginning, watching my children grow…everything they said described to a tee how my children were experiencing the world.  Not only could they explain why my children were acting this way, but they had strategies and techniques that would help to treat the whole child and not just the symptoms. I hope to document my and their journey. It is not always easy to see the everyday changes when you are on the path until you look back at how far you have come.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.

-Robert Frost

What is my road less traveled? Well, for now it is choosing not to give up on my children.  It is making the choice to turn our lifestyle on its head if necessary, to see them thrive.  For me, it is figuring out what it really means to have the perfect children and the perfect life, and not just what I have always thought it meant.  And although at this moment in time my children each have very limited communication and find it hard to sustain eye-contact, there are times when they allow me…moments.  Sometimes Dempsey, who is 2 1/2 and knows barely 4 words, will catch my gaze and hold my face with her little hands.

Time stops. I.see.her.

Perfect.

Max, who is almost 4, sits on the school bus and stares at me through the window. I wave at him like a maniac and mouth “goodbye Max. I love you” unsure if he knows exactly what I am saying, but with faith that one day he will wave back.

I know they are in there. This is my perfection.

Dempsey the fighter

It was difficult for us to come up with girl names that we both liked.  The name Dempsey came to us both and we just knew it was perfect for the little girl that would soon be joining our family.  We first saw it when we were watching Rocky Balboa the movie.  Rocky was wearing a t-shirt in one scene that said Dempsey on it.  It immediately reminded me that my grandfather on my Dad’s side was name ‘Jack D’ after the famous heavyweight boxing champion Jack Dempsey(which is the same reference in Rocky).  We just knew this little girl was going to be a fighter and she has lived up to her namesake.  She has the strongest will and although at 2.5 years old she can hardly speak a word, she doesn’t let that stop her from getting what she wants and needs. 

This fiery personality definitely has its challenges.  From day one something has been off.  We went through at least 5 different formulas trying to find one that she could digest easily.  We finally settled on a type of soy formula, that when warm, smelled of potatoes and so she earned the nickname “spuds” and it stands with all its variations today(spudly, spudis, spuddy).

Unlike Max, who developed typically and then regressed around 15 months, Dempsey never hit any of her first year milestones.  She crawled late and the she did this crazy thing where she would walk around on her knees for months.  She finally began full-on walking around 19-20 months.

As of a April 2013 this is where she stands developmentally:

Cannot sit still at all.

Cries and whines constantly for a myriad of reasons

Can speak 9 words that I know she knows the meaning of…car, bye, it’s-okay, no, hi, ball, apple, circle, square

Is beginning to mimic a lot of words and sounds, but not associating meaning or context with them

She is singing familiar melodies(sunbeam, popcorn popping, abc song, adele’s rolling in the deep ha!)

She understands maybe 1/3 of what I say to her…hard to know.  She recognizes a handful of phrases for sure( time for bed, where’s your blankie, where’s your cup, c’mon let’s go, let’s get in the car)

She has a very difficult time maintaining eye-contact. It’s very uncomfortable for her.

Responds to her name 2 out of 10 times she is called. Most likely is responding more to the negative tone of voice.

Does not acknowledge other children around her.

Likes to do some pretend play with toys, stuffed animals.

Goes into a rage at the drop of a hat. If you don’t get her a drink fast enough, or take a toy from her, or don’t do something she wants she starts head-butting, banging her head on whatever is closest(wall, chairs, bed, hitting it with her toys) she throws whatever is in her hands, which is usually an assortment of small toys.  She screams, kicks and flails on the floor and refuses to be soothed.

Because of her limited communication it is difficult to know what is defiance/typical two-year old behavior and what has become a coping behavior out of frustration because she cannot be understood.

She cannot mimic gestures when prompted, however I have seen her try in a dancy sort of way try to do actions to songs.

She cannot point/gesture to tell me what she wants to have/do/eat

Cannot nod or shake head

She does not read my facial expressions/body language–she only responds to my tone.  She cannot distinguish when I am upset with her or with Max

To get what she needs she yells, pushes me in the direction she wants me to go, has me pick her up and then moves her body the way she wants me to walk, makes me present choices and then rejects them and when she is quiet, I know that means yes.

Has to have milk/water warmed and in a sippy cup still. Refuses to drink from a regular cup(even though I have caught her trying it out a couple times, so I know she is capable), and throws a tantrums  until she is exhausted and until we are all exhausted until she gets what she wants.

Very, very selective with food. Taste, texture, and temperature are all major factors. Right now her preferred foods are: Tator tots, yogurt, applesauce, potato chips, chocolate veggie muffins, occasional waffle, chex with coconut milk.  Her diet concerns me the most, because her system seems so sensitive to so many things. I have found that almond milk and bananas wreak havoc on her system, so they are banned. She refuses to get anything new even close to her lips.  Her diet lacks protein, veggies, and nutrients.  I can’t even get her to eat some sweets.  I believe there is definitely more going on in her gut and brain than just her making picky choices.

Despite all of this she has managed to grow like gangbusters! She is almost as a tall as Max. All of her vitals are good and she adds so much personality to our family. We couldn’t imagine it without her!

 

Maximus Prime.

Max is changing like crazy everyday and I want to document a detailed description of where he started and how far he has come just over this past year.  So brace yourselves this may get a little tedious, however, one thing I have realized is that most parents don’t even consider how their children’s brains are developing until something is already way off in left field, like they aren’t talking or walking, but there are so many tiny subtle things that our incredible brains naturally allow us to do like being able to ready body language and facial expression  that it is a very real miracle that we are able to communicate and relate with one another at all! Anyway…on to Max.

Before Max started special ed. preschool last year. He could only speak a handful of single words.  Juice, cookie, cake, door, clock, blankie, etc. Most of them just labeling objects and food that he wanted.  When tested his comprehension was that of a 2-year old, however I do not even feel that this is accurate, because although he understood how to label many items, words held no greater meaning for him. He couldn’t see a “bigger picture” or create context. (One of my many frustrations with traditional assessment). His spoken language could not even be measured by a test.

He was not able to clap his hands or point at anything.

He would sporadically respond to his name being called.

He rarely made eye-contact

He did not acknowledge other children in his presence, unless they bothered him

He did interact with Adam and I, but only upon our initiation

He did not acknowledge Dempsey

He could not sit still during meal times, he had to get up and run around between each bite

No impulse control, even after repeated “time-outs”

Very selective in food choices, eats the same things everyday and    tantrums at the site of anything new or foreign. (goldfish, cereal, banana, pancakes, apples, mandarin oranges, grapes, chicken nuggets, chips, juice not water)

He had a very difficult time with transitions from one activity to the next

Slap or bang on things when he was upset

Constantly whining and crying

No fear- would run in the street or away from us without any fear of being hurt or alone

Could not mirror or mimic behavior when asked(i.e. waving, gestures, dancing, signing)

No awareness or interest in potty training

A few of these things could be very normal for his developmental age, but when you compound them it is very apparent that next to a typical 3yo he is very delayed. He should be speaking in complete sentences and ideas. He should be exploring feelings and emotions, engaging with his peers,  and refining his gross and fine motor skills. These are all traits of a healthy developing brain.

The first day of preschool was brutal…for me.  We sent him away on the bus and hi cried.  He looked out the window like we were sending him away forever.  He didn’t understand where he was going or what was happening to him.  I was traumatized and kept wanting to go and check on him the whole 2 hours he was gone, but I resisted and the next day everything went just fine. He was an old pro.  So many things on the above list changed for Max:

I’ll never forget the first day his teacher sent home this note from school

By December of 2012 he had just exploded with new words and he was able to sit still longer. He didn’t whine and cry constantly.  One new development was his new fascination with numbers and the alphabet…by March the fascination had turned into a fixation and the alphabet was all be ever heard!:)

Although we were ecstatic about the progress he was making, we could still see the gap widening between him and his peers, and we knew there had to be more help out there. Everyone told us we were doing all the right things, but I just couldn’t leave my son’s development up to the school system.

…to be continued.