Tag Archives: Autism

Make a mark.. 

  Once upon a time.. I bought a marker board to keep myself organized.. With 2 kids and an exchange daughter.. (2 of which were super busy all the time)..? 

YUP.. Our house was crazy busy.. 

So I found this marker board with slots for the days of the week.. It was perfect!!

..or so I thought.. 

You see.. After the first week of being organized? I started to slack off.. Just listing general activities.. 

Then slipped to weekly routines..

And then?

Ha.. Then names and messages started showing up. My exchange daughter signed her name.. And then her friend followed suit.. Then my niece added her signature (so I’d have it when she was famous).. 

Pretty soon? 

YUP.. Pretty soon there was no room left for a schedule.. In fact the schedule was erased .. 

When my exchange daughter flew home to Italy.. We couldn’t bear to erase the board.. Not one word.. 

Pinned underneath was a note from our very first exchange daughter..  All our pieces of heart.. All in one place..

 When our next exchange daughter signed her name to the board I smiled.. They all made their marks on our hearts.. so why NOT show it on our refrigerator too.. 

I think we all live our lives that way.. Wanting to make a mark on the world.. A mark SO IMPRESSIVE that no one will want to erase it.. 

A long time ago, I started out with grand ideas on how to do just that.. How to make my mark on the world. 

But then my life changed ..

My kids were born.. 

My youngest was born with Autism (and a splash of mood disorders).. So my career plans came to a halt.. And then a detour.. 

..my dreams of making a mark are still there.. 

But lately? Lately, I have been helping my daughter get ready for college.. And listening to my exchange daughters get ready for their exams.. 

ALL of them ready to make their mark on the world.. 

But the one you don’t see easily is my boy.. 

Behind the Autism.. And the smiles.. the quirks.. And the laughter.. Inside that boy lives a dream.. To be a farmer.. To get married .. To be a father.. To travel to Alaska and Egypt .. 

He EVEN has a checklist in his room.. complete with ages next to each goal.. 

You see? Even though his days are sometimes filled with anxiety and frustrations? Sometimes with more stumbles than successes? 

He WANTS to make his mark on the world.. A mark SO beautiful that NO ONE will want to erase it.. 

So my “mark” will wait.. While I help my kids make theirs.. 

Come sit…

img_0311My son is rumored to have “special” needs..

Ok.. I know he has Special needs.. With Autism and a Mood disorder ? I’m not in denial.

But sometimes? Sometimes I think my boy has things figured out better than I do..

You see? When my son is stressed? He takes himself off alone and does something he enjoys until he calms down. Most often that “something” is a campfire. He can sit for hours just watching the flames dancing in the fire pit. And with a content smile on his face, he will call out to me.. “Come sit..”…

But usually? Usually I am too busy.. Getting dinner around or cleaning it up afterward.. or there are emails to answer… book promoting tweets to copy and paste… research to search for… schedules to plan for..

Yes I know… it doesn’t sound like much.. but it seems like there is always something that needs to be done.

Last week I was sick.. and so tired. So I just sat down.. and read a book. NOT skimmed through a book.. but slowly read each page and enjoyed it. Slowly fell in love with each character.. resisted the urge to read the last page… read every descriptive word…

It felt….??

Refreshing… and I was oh so calm.

So why is it that we give up “refreshments” as moms? or even just as adults? Why do I feel like I have to sacrifice my favorite things to be a good adult? I was able to DO so much more that following day because I was content and clear minded…

So maybe my son does have special needs… but I still learn so much from him.

 

We got by.. 

  
Yesterday was a long day for My Simon.. We jam packed every minute full.. And he had to get through his whole day at school knowing what he had “endure”… But after getting through his school day (albeit loudly)… And was somewhat patient through my Audition workshop after school.. I watched him walk independently into his trombone lessons with a new instructor.. And he rocked it.. 
I know some of you are probably thinking ..”ok?!? My kid does that everyday..” And that makes me happy.. I love to see kids be successful whether it comes easy for them or if it’s more of a struggle.. But for my boy? He struggled to learn even basic skills like talking.. Doors were always a struggle to walk through.. But he was drawing by age 18 months.. He could write the whole alphabet .. But not utter a word.. So yes! We celebrate every success..

This morning I have been thinking back to my early years as Simon’s mom.. When it felt like it was me and Sy against the world.. When I could see my boy so clearly at home (when it was just us).. Only to watch how he would disappear when we walked through the doors to go into the outside world… 

This song that the Johnny Orr Band sings (We’ll get By).. Makes me tear up for 2 reasons.. First because I remember that feeling.. Being close to tears of frustration SO often but knowing that we were going to make it. Secondly? Because we have gotten by.. And we have come so far. 

Simon has come so far from the boy who needed to be held in public because the stimulation made him bury his face into my shoulder.. Watching him walk through a “door”.. into a room with a new person.. and being successful at showing his skill with his trombone?? Yup.. we’ve gotten by.. 

  
But before you tell me how great of a mother I am.. His success isn’t mine.. God has always put some of the best people into Simon’s life (and mine).. People who help challenge him and support him.. But mostly? Mostly.. Simon is one of the strongest people I know.. He holds himself to such high standards and pushes himself forward when I am tempted to let him have a “break”.. 

So while I have shed so many tears of frustration .. while trying “to get by”.. I wouldn’t have traded a single one.. I love the son I was Blessed with.. 

Stay on the Path…

Sometimes I look back at some of my blogs and re-read them.. A friend of mine was talking about how much my “Stay on the Path” blog touched her.. 

So?? 

I opened it up and re-read it..

At the time I wrote it.. I had been only think about the aspects of being a mother of a child with special needs. But today? Today I realize it could count for any number of my struggles in life..

And lately my path has been really icy..

Stay on the Path…. (For anyone who hasn’t read it)

It’s a Spring thing… understand?!?

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I have a son who has special needs… He has autism with a touch of bipolar. As a parent? That can be tough on a day to day basis.. or it can be easy.. depending on the day… and Honestly? Honestly it depends on the season. Summer is the easiest for us…  .. but Please don’t think my son is the norm for all kids with Autism… 

There is a very accurate statement out there.

If you know one person with Autism? Then .. you know ONE person with Autism.. 

Every child with Autism is an individual.. every child with Autism has their challenges.. every child with Autism has their super powers…. Every child with or without Autism.. is a child… first and foremost.

But in our little crazy household? 

Summer time is the easy season to parent. So much to do.. free time to explore. 

Fall and Winter come with their mood challenges… 

But Spring?

Spring is a challenging time for our family… The longer days… the warmer temps… the increased activities… These all increase the serotonin levels flowing through all of our veins… but for a child with a mood disorder? It wrecks havoc on the delicate balance in the system.  For us it means increased happiness.. increased agitation.. increased activity.. increased anxiety.. increased frustration… increased laughter.. increased tears.. and sometimes… increased aggression.

I say sometimes…

There were years that all I could remember was the aggression.. because it is devastating… Can you imagine anything more devastating than your child hurting another person? Can you imagine anything more devastating than your child feeling so “in danger” that they lash out to protect themselves? Can you imagine anything more devastating than your child feeling so OUT of CONTROL that they punch themselves in the head to relieve the “pressure”?

All of these things threaten to overwhelm me in the Spring…

But I am Blessed… My husband has always provided a stable platform for me and our two children. Because of this, I have been able to have careers flexible enough to care for our son. Flexible enough that I can be home for him when this Spring thing happens.

With my husband’s support.. constant prayer … and the wonderful people God has placed in my son’s life?? We survive every spring.. Every year we grow a little stronger and mature (my son and I both)…

My son has grown so much.. in fact… that this spring? When the flowers bloomed.. I was able to do some things I enjoy in the spring.. Like taking walks and reading books… and sewing prom dresses.

So someday soon… I hope to rewrite this spring thing…

50 firsts…

Someone once asked me what it was like to live with special needs.. Not just special needs really.. But with Autism (and a side of bipolar).. At the time I couldn’t really answer..

I mean.. With autism you know what you get.. Overload.. Anxiety.. Obsession.. meltdowns..

But add Bipolar? Then you add unpredictability.. When you get home? You don’t know if you have a child with a good mood or anger.. Or tears. When your son comes out of his room? You don’t know if you will have cooperation or frustration..

Honestly?

Honestly I can’t tell you if I will see my Son.. his autism.. OR his bipolar… from one minute to the next .. Especially in the spring months..

So to the question? I simply said, “It’s a roller coaster ride.. But it’s worth it.”

And that IS the truth ..

Tonight I watched a movie with my girls called “50 first dates”.. It was really cute .. a little crude in places (yes I am very old-fashioned.. I don’t like crude jokes).. But still cute.. And worth the watch..

For anyone not familiar.. 50 first dates is about a young lady who is in an accident that results in a brain injury. Because of the injury, she cannot create new memories .. So everyday her dad and brother recreate the last day she remembers. Over and over and over again.. When she meets a new guy, he has to help her fall in love with him over and over again.. every day.. Like EVERY day.. Eventually they develop a system.. They create a video of flashbacks since the accident.. Events.. Dates.. And eventually their wedding… And the young lady writes her thoughts in a journal.. A list of things she doesn’t want to forget.. Important things ..

Then she goes to sleep and wakes up refreshed.. And starts each day over again.. Remembering nothing .. Then she watches the video and reads her notes .. EVERY day ..

At the end of the movie? When we saw that she had to be reminded of her child that she couldn’t remember. As the credits began to roll, my daughter said.. “What a terrible way to live”..

But what if she never progressed beyond that accident.. What if she never stopped living that day over and over? What if she never lived ANYTHING NEW beyond that day?

That would be terrible indeed..

But to have flashback videos and hand written notes every morning.. To catch her up to ? To remind her she is married? To remind her she has a baby?

To be living that married life?

To be a mom?

That is being Blessed!

Being a mom to a young man with autism? Living with a loved one with Bipolar? It is very similar to “50 firsts”..

Every morning I wake up.. And I watch a flash back of important moments in our lives.. Important break throughs.. Flash through my mind.. Every day while I drink my chai? I read through the notes I have made through the years.. Only the important ones..

And then I set forth!

I set forth to make new Memories.. New important events.. I deal with each event as they occur.. Living in the moment! Never bringing the past into play.. Not remembering the mistakes from the day before. Unlike the movie? These choices are voluntary.. To choose to forget the bad.. to forget the mistakes..

THEN? Then I record those moments in my mind.. Sometimes I even write important information down..

Some days are good.. And just like movie? Yup.. Some days are a disaster.

And just like the movie? Sometimes the days are so bad that I cry myself to sleep at night ..

Then every night ? I sleep and the stress washes away. I wake up each new day ready to conquer some new activities.. With my flash backs and handwritten notes.

And we celebrate every “first” that comes along.. His first 2 word sentence at 5, his first full night sleep at 6.. His first solo cooked meal.. His first time walking to class on his own..  The first test taken by himself.. The first time he stayed home alone..

Ok.. You are right! There are WAY more than 50 “firsts” in our life.  But we celebrate each one…

I know that some people look at my son’s life .. At MY life.. and they think, “What a terrible way to live”..

But to me?

To me a world without my son in it? A world without 50 OR 100 “firsts” being celebrated?

What a terrible way to live…

The small stuff…

In my life I ALWAYS celebrate the small stuff.. I make little goals and update them often.. When my son said his first 2 word “sentence” at 5 years old ? We celebrated.. Then I set my goal to using a “sentence” every day. When my daughter read her first book solo.. at 5 years? We celebrated… then we set our goal to reading a book (solo) everyday.  When my son told me he was mad .. Instead of melting down? YUP!! We celebrated! (I admit my son looked confused when his mom laughed and hugged him for saying “I’m mad at you.”) We celebrated and then talked about what made him mad.

When my daughter stood up to the bully who had pestered her for years..? Ok.. that was a BIG thing.. but still we celebrated.

Big goals sometimes take too long to accomplish.. and admit it.. If goals are too hard, sometimes we give up.  So by keeping my goals small? My milestones achievable? Yup.. I tend to celebrate a lot.

Which is healthy…at least I think it is…

As an author, I celebrate each milestone too.. especially with book selling! Yesterday Shadows broke through the ranking of 100k on amazon’s best selling ranking. Doesn’t sound that great really, lol. I know.. I know.. it sounds like Shadows is barely floating. But to me it is a small goal. Ranked #100,000 out of a million books? It’s the top 10%.. To me that’s great..

SOO.. Yesterday I celebrated reaching my milestone…

Today? Today I set my next goal to keep my ranking up to 100k..

What am I celebrating today?

Today I am celebrating that I am only 16 “likes” away from 200 followers on my facebook page.. Once I meet that? Yup.. keep aiming higher…. one teeny tiny step at a time..

I love celebrating the small stuff..

Interesting in checking out Shadows? Here is my Amazon link.. and where you can get a free sample. 

Food for thought…

If you came to dinner at my house… you might think that you would want to pass on seconds.  You see..  my house is Gluten free.  Well to be exact… we are Gluten free… dairy free… yeast free… corn free… low sugar… and 20 other free’s.  Everything else is on a 4 day rotation.

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Master chef

In fact.. you may think we eat sticks and twigs… (Ha.. we actually bought a brand of pretzels called “sticks and twigs”… we didn’t buy them twice.. yuck!)  There are a lot of “non-desirable” healthy gluten free options out there.  But we have also found very good options as well.

We hosted an exchange student this year.. and she was more than a little worried about our food.  When her first meal was spaghetti… followed by Angel food cake… she soon relaxed.  She came to realize that dinner may be rushed (especially when I get lost in “Writing Land” or Researching.. or between practices and games)… but it all tastes relatively normal… And fresh… Cooking Gluten free (and corn free) usually means cooking from scratch… So no Chicken with Shake n Bake… But we still have breaded chicken.  We still have Parmesan chicken… We still have roast.. we still have gravy… and …we STILL have brownies…

Gluten free cooking takes a little practice.. and was very overwhelming at first.  So we changed tactics.. Instead of focusing on the things we could no longer have.. We made a list of all the things we COULD eat… and went from there.  Technically.. I went to the store.. with headphones and classical music… I read the labels of 100’s of boxes.  I found which mustard was gluten free.. which dressings… which taco shells… which cereals… which chips… which hot dogs… You get the picture…  It was a lot of research (in the beginning)…

But it was worth it…

It was SOOOOO worth it….

You see.. I see my son improving daily as his body heals.  I can see the symptoms of his Autism… his Bipolar… his confusion… his aggression… I see them slip away as his body can absorb vitamins and nutrition.. I see the light in his eyes more often than the shadows… I hear laughter more often than growling… 

Yes…

It was worth it…

But something unexpected happened… My daughter (I am not going to embarrass my daughter today) and I both improved in health as well.  My asthma.. my headaches… both only occur occasionally now.. My skin cleared up… I lost weight… 

If you could lose weight AND feel better while still eating brownies… would you?  

Yeah … me too…

I was so happy…. but I felt so guilty… and even ashamed.  WHY had it taken me so long to figure this out?  WHY in all my research did I NOT find this sooner?  WHY did God let me go so long without finding this solution?  WHY did it take my son hitting rock bottom before I figured it out?  And HOW ON EARTH did I miss all of the evidence?

YUP.. instead of being happy to find all this research.. I cried.  I cried hard.  My son’s life was a mess… and it was primarily from the food I was giving him.

I have been praying for a year for the Lord to help me forgive myself.  

This morning I was reading my devotion.. and it asked the question… “Why did God let Joseph sit in Jail for 2 whole years before He released him?”  And I sat up a little straighter… “Why didn’t God let Joseph out?  Let him be free and productive while waiting for Pharaoh to have his dream?” And I put my Chai down…. 

Now I am no Joseph… I was not the favorite child of a favored wife… I was not the youngest child of a large family… I was not sold into slavery by jealous siblings… but I think I may have prayed the same prayer as Joseph.  As he sat day after day in prison.  Prayed night after night for answers.. Prayed night after night to be delivered from his prison.

Don’t get me wrong.. Autism isn’t a prison.  My son’s smiles and laughter have always brightened my day.  His hugs and insights have always made me a better person.. But Autism .. aggravated by vitamin deficiency and malnutrition?  It is very limiting.  There were days we didn’t dare go in public.  Afraid he would be overwhelmed… So for us.. It became a prison…

And like Joseph… I think God had a plan for me… And that plan may have called for my son to hit rock bottom… I think God knew I had to be ready to change my whole world… God had a plan.. and He waited for His perfect timing… 

Because.. as my favorite verse (this year) says… “He has made everything beautiful in its time,” (Ecclesiastes 3:11)

When God led me to the Nutrition specialist?  When He delivered all those test results into my lap?  I was ready… 

and It WAS beautiful….