Tag Archives: Autism

A new day.. 

Raising ANY kid poses its own challenges.. but raising a child with Autism (and a side of mood disorder)? 

Yeah… we’ve had some rough days .. 

…ok.. a lot of rough days … Days that I never want to go back to. New meds, withdrawling from meds, NO meds, no sleep…

… I could go on and on…

It was never hard for me to forgive my son for his bad days.. but it was hard for HIM to forgive HIMSELF.. 

So early on? We started telling him, “That was yesterday buddy.. TODAY is a new day.. today is going to be a good day!”

If he had a bad day and we had to take away his TV or his computer privileges? It ended when he went to sleep… 

Everything reset with the morning .. 

Luckily for us? We have had amazing support at the schools we have attended. They have maintained this “new day” policy with him through out his school career. Always forgiving him for bad days and moving forward. Sometimes easier than I could have…

Today as I watched him walk confidently into the school..? I think about how he is counting down the days until he will be a senior. And I think back to when he could barely get through a school day.. 

…there were days I thought we would never get to this level of independence.. this level of confidence.. 

..but in the morning when the sun would rise.. so would my faith that good things were going to happen.. 

When the sun rose this morning, it was such a sight. And I am filled with the promise that Today IS a good day.. 

I hope you all rejoice and are happy in it.. 

Celebrating…

What a fabulous day!!

FIRST? First we woke up late because we all slept through our alarms (hey… it was a great dream) … I barely made myself look presentable for public.. then we all rushed through our morning.. I made a boring lunch for Sy.. rushed everyone out the door and then a bus was parked at the entrance of the school.. 

And SIMON WENT to school… 

Like he physically (and calmly.. I might add) walked IN TO the school with not more than a cross look at the bus in our way (that he deems a “muddy mudslide” that’s in our way).. 

Some of you may wonder if I am serious to be celebrating such a “terrible” “mom” moment..?? HaPpY we overslept and I took my kids to school late? 

Haha.. 

I AM serious.. 

This is amazing!!!!

When Simon’s Autism was at its worst and his mood disorder was unstable? Everything had to stay on schedule .. and nothing could be out of order.. or he wouldn’t (couldn’t) have gone to school.. 

So exciting!!!

Maybe tomorrow he will let me stop and take a picture of the sun peaking through the fog on my favorite road.. lol.. 

I guess I shouldn’t press my luck ..

That moment.. 

A million years ago.. ok.. it was more like 7 years ago.. I stood on my own doorstep letting the tears run down my face.. 

Someone had asked me how my son’s appointment had gone for his legs.. 

..it had NOT gone well.. not even close to well… and I could no longer hold my fears in.. or my sorrow .. 

I am a cry-er.. I am not a loud cry-er .. ha.. but neither am I a pretty cry-er .. I do think that I have cried enough tears (in my lifetime) to fill Lake Michigan. Tears of disappointment, tears of sadness.. tear of joy .. and worry.. and often anger.. 

But in that moment? 

In that moment.. I felt so many emotions I couldn’t sort them out. 

Why? 

Well.. what I thought were simple growing pains for my son? Those pains weren’t simple.. and my son needed an emergency surgery. The appointment that I had put off because it wasn’t convenient for my schedule? Putting it off those few days had caused my son to be in prolonged pain.. 

My 10 year old son’s growth plates were too soft to hold up his weight.. he would need a screw to hold that growth plate in place if he wanted to walk.. 

.. and me? I had been too busy trying to balance everything in my hectic life to notice…

.. so in that moment? 

In that moment.. as I let the tears pour down my cheeks..? 

I was so angry .. angry at myself for not seeing how much pain he was in (even if he didn’t complain).. I was so angry that I hadn’t made it a big deal about it when I called the doc for an appointment.. I was so angry that the surgery was going to cause him pain.. 

..  I was worried because.. well? ..worried because it was a surgery.. and worried because my son did not do well with hospitals …

..and disappointed.. 

.. disappointed because nothing in his short life had gone easy .. 

.. and .. I was sad… 

I was always strong.. I always carried my Faith in God’s plan like a Shield.. I always smiled through my tears .. always cheering others on .. 

..but in that moment? 

I couldn’t breathe.. I was broken.. 

..but on the other side of those tears? I picked myself up and trudged through the unknown territory that God had planned for me..for my son.. for our whole family.. 

I have often heard people say that “God will not give you more than you can handle”… I would often laugh and reply that I wish God didn’t have so much faith in me.. 

..but I think that statement is a lie… 

I think that God absolutely gives us more than we can handle.. but NEVER more than we can handle WITH HIS Strength .. 

With God .. All Things are Possible..       

                                      Matthew 19:26

.. even with my great Faith in my Heavenly Father.. I often find myself thinking I can plow through problems with my own strength.. I find myself not wanting to trouble God with my “little” problems because of all of the BIG problems that deserve His attention MORE than mine do.. 

..sometimes it takes me falling to my knees in tears .. sometimes it takes me feeling broken and alone… sometimes it takes “too much” .. to show me that I can’t do it on my own.. 

.. and then? 

Then God fills me with His Strength and His Love.. and All the things I have to do? They all become possible..

.. and it is all Beautiful in its time… 

A puzzle .. 

Parenting any child can be a maze of interesting (and sometimes painful) trials and experiences. Having more than 1 kid means you travel more than 1 parenting maze.. at the same time.. 

My two kids have carefully molded me into a strong, resourceful, patient adult.. 

How? 

Ha!! By testing every boundaries, terrible reactions to getting their blood taken, sleep walking, night terrors, wondering off in stores, tantrums, illnesses, sassy natures, emergency hip surgeries.. and medical conditions. 

By some miracle? My kids and I have survived this thing called childhood and we are ALL doing great.. 

It’s funny to me that people automatically assume that I had more trials with my Son with special needs then my “typically developing” daughter… Ha.. I have so many funny stories of my daughter testing every rule.. creating and recreating parenting techniques to guide her independent and …spirited .. personality into being successful.. and the awful (often hilarious) situations she got herself into.. 

In fact.. I often tell people that both my kids (and all kids .. in their way) .. have special needs.. Each child with their own super power.. and each child with their weaknesses.. some “special” Need that we have to pay special attention to.. 

The “great” thing about my daughter is that she showed off her super powers to the community.. and saved her weaknesses for home.. Ha.. How many times I heard a teacher say, “Your daughter is so responsible and organized.. and so polite all the time..”? Too many to count.. Then she saved her stubborn pride, her unbending determination for us at home. (Sigh)

Years later? We look back and laugh.. Man do I love that girl.. and what a successful adult she is turning out to be.. 

But with Autism? You can’t hide those “Special needs” ..and you can’t save them for home.. 

Traditionally the symbol for Autism is a puzzle piece.. because it is a puzzle trying to figure out what causes the symptoms.. a puzzle on how to get through the walls.. how to help them.. how to push them to be a success.. 
I agree with the puzzle symbol because I have done 16 years of research to figure out  how to help my boy with his roadblocks. 

But now that we have overcame the most difficult of these roadblocks..? Now that we have solved the mysteries of vitamin deficiencies and self stimulating behaviors..? Now that we have come back from the abyss of aggression and irritability??

Now that I just have my son back? 

I realize that my symbol for Autism is a little different than just a “puzzle” piece. 

When you see a sunrise coming up behind the trees? It can be a little frustrating because the trees are blocking out the light.. blocking out the beauty of the sunrise on the horizon.. 

But I love to see the sun peaking through the trees.. 

To me? To me the sun peaking through the darkness gives us the promise of better things… Hope for tomorrow .. a peak at what’s behind the shadows.. 

This is my symbol for Autism.. the sun peaking through the darkness.. 

When my son’s Vitamin deficiencies reached their lowest levels? The light in his eyes all but disappeared. He was malnourished (even though he ate enough to keep an army alive), he was unhealthy (despite the best medical attention).. and he was so miserable. He couldn’t focus, he could no longer make eye contact, he was aggressive and you couldn’t have a conversation with him. 

But in the midst of a storm of emotions? 

The rage would pull back.. the curtains would lift from his eyes.. and all of the sudden? All of the sudden the sun would shine from his eyes.. and I could see my boy again.

 I could see that he was still in there. 

He was still there.. Shining from behind the shadows of Autism.. 

and it was THAT sunlight that kept me going.. The hope that kept me pushing on.. 

And NOW? 

Now that we solved so many puzzles, we get to see his sun shining every day. 

There are days like yesterday, where his sun disappeared behind a clump of trees.. a little grumpy.. a little stubborn.. and a lot frustrated.. 

.. and I found myself annoyed.. annoyed because it was bad timing.. Bad timing for me.. 

But when I took a step back.. and took a few deep breaths.. (..ok.. ok.. a LOT of deep breaths)… ? I could still see his light begging to get out from behind that frustration.. 

So to me? Autism is so much more than a puzzle.. 

.. it’s a light.. that insists on shining through the darkness.. 

Just wait and see.. 

I have often been asked what I have planned for my son’s future. I always smile and reply “He wants to be a farmer..”

Most of the time people smile in return .. 

But sometimes there is an awkward silence and the inevitable.. “Do you really think he will be able to work? To hold down a real job?”

Yes.. 

Yes I do! 

And no I am not offended by this question.. 

You see? While my son has Autism (and a splash of bipolar).. His disabilities don’t own him. Simon is his own person and he knows what he wants.. He has known since he was 4. 

You may think Simon grew up in a farming community and THAT is why he wants to be a farmer. That he knows no difference.. Well THERE you would be mistaken. Our Simon grew up in a city from age 3 to 13.. 

Yup his love for farming seems to have been destined for him. 

So what did his father and I do? Well? We moved to a farming community back home in Michigan. 

Most people question our Sy’s ability to hold down a job because of his behaviors at school.. Freezing in doorways, anxiety over homework, refusals to take tests at times.. And wanting to go home. 

But you see? At school? 

At school, Simon knows he is behind his peers.. School work is hard… He doesn’t understand test questions because of the wording.. And sometimes (even IF he did understand them) he doesn’t know what they are asking.. He KNOWS he is built inadequate for school.. 

And YET? 

Yet you will see Simon get up every day and force himself to try to go to school. He can be close to tears in frustration over homework.. And yet he is one to INSIST he finish.. He pushes through anxiety, confusion and what ever distractions are around him (or distractions going on in his own head) to SUCCESS on the other side. 

That sounds like a job to me… 

At home, Simon is different. At home he is confident, creative, helpful.. He washes his own laundry, washes dishes, cooks whole meals, cleans the house, does chores, builds with his dad.. 

He does an amazing job!!

Not “pretty amazing” for a kid with autism.. 

JUST pretty amazing for a 17 year old.. Because he does it exactly the way I do.. (Or the way his dad does).. Exactly the way he was taught.. 

Then? Then he adds a slash of creativity.

This week, I woke my son to face another hard day at school. As I rubbed his back and talked about his day.. I told him I was going to teach him to drive our lawn mower after school. 

He sat straight up in bed and wiped the sleep from his eyes. “What did you say?” 

Smiling, I repeated that I thought he was old enough to learn to drive the lawn tractor to mow the lawn. 

The smile on his face made my heart happy..

He quickly got ready for his day.. Was still a little grumpy with his sister.. But went to school easily.. 

AFTER school? Well after school he quickly changed into his farmer hat and overalls, his John Deere shirt with long sleeves and farmer boots.. 

And our lessons began.. 

I admit I get nervous with vehicles.. The same nervousness I got when I taught my daughter to drive .. 

I ran from one side of the lawn mower to the other .. Pointing out how FAR the mower deck sticks out.. How to slow down.. How to stop.. How to speed up a little.. How to crank the wheel so you don’t crash.. 

The first 5 mins were nerve racking for me.. Because he learns best by doing.. So at a snail’s pace and yelling over the motor and earplugs.. I gave him on-the-go lessons.. 

And then he was off.. One circle around the yard and I moved the mower one notch faster.. He watched how I did that too… 

He looked for cars when he circled up into the road.. Kept the mower in a straight line.. He mowed next to the first stripe perfectly (or circled back to fix it.. Mowed around baby trees and big trees.. Power poles and ditches.. 

By the 3rd circle of the yard, I stopped following him.. He no longer needed me. 

After 4 hours? He was up to full speed (by his own choice) and the yard was flawless.. 


Not “pretty good” for a boy with autism..

Not “pretty good” for his first time.. 

It was pretty awesome.. No missed spots.. Straight lines..

 In fact?  My husband said he had to weed whack far less than when I mow.. 

I am not offended by that.. Just really proud.. 

But I am not surprised.. He always throws himself into his work.. And doesn’t stop until the work is done.. And done well.. 

We could use more workers like that in the world.. 

So YES… I think Simon will keep a job and support himself.. 

And yes, he will need support to start new adventures and to get through difficult situations.. Like doctor offices.. paperwork.. And paying bills.. 

But he will make it.. And it’s going to be amazing.. 

Not amazing for a kid with Autism..

Just plain amazing ..

But you don’t have to take my word for it.. Stick around .. 

…wait and you will see it for yourself.. 

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?!?

IMG_0081
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…