Tag Archives: Autism

Left behind..

Today I was flipping through the 100’s of photos I took last week.. and I found one I hadn’t intended to take.

The accidental picture of my shadow on the pavement amused me at first..

Partly because my first novel is titled “Shadows” … and it’s based on my belief that we are often affected by the “things” left behind by others in our lives.. the “shadows” that are left behind..

As I flipped through the rest of the pictures from that parade?

I started to see that picture in a different light..

So many of my pictures were intentional. I was capturing memories of my son as he rode in the back of a truck with a top hat .. talking to an angel of a girl. I intentionally took photos of the international students as they carried their flags in the parade. I tried to capture the joy on the faces of those kids around me as they enjoyed that day.

THEN? Then in the middle of these amazing photos.. is a random picture of the ground (and my shadow) .. that I had not intended on capturing.

How often is that the way life is?

Today I INTENDED to comfort a girl who was nervous about a presentation…

Today I INTENDED on being a good influence on a young man who struggles to trust people..

Today I INTENDED to encourage a little guy who hates math.. because he doesn’t understand it..

Today I INTENDED to impress on my son, the importance of good behavior in all places.. even the halls of school.

…but what about the other impressions I leave with people ..

…the impressions I hadn’t intended to give them?

My last few weeks have been jam packed and as I go into the last few weeks of theater season? They aren’t about to get any calmer..

… I always worry that in my times of stress, I will leave behind an impression.. (or a photograph of time…) that I hadn’t intended to give…

As a result?

When I feel emotions in me start to rise? Anger, frustration, impatience, .. or tears…? I take a deep breath … and decide on an intentional impression…

… and I hope that it’s the “photograph” of myself that sticks with someone..

.. and hope that it’s enough…

What are you leaving behind today?

..from the sidelines..

This week has been jam packed for me.

Ok .. this month has been jam packed for me.

Starting a new job… jumping into high school musical season.. trying to meet writing goals.. paperwork.. phone calls..

…Not to mention keeping the laundry up…

Soon enough?

Yup.. I’m exhausted and behind schedule..

But tonight I took a couple hours and just wore my “Mom” hat… I just sat on the sidelines of the action…. and watched..

Our high school does an annual Powderpuff football game.. and as is the tradition? Yup .. the boys dressed up as cheerleaders.

This year my son dressed up with them. And he cheered with them.

As most of you know.. my son has Autism .. and a splash of mood disorder.

But have I told you how this community has embraced my son. Embraced him and encouraged him. They challenge him to succeed and cheer on his successes…

… and my son has soared here..

Tonight?

Tonight my son did not need me. He did not want me to stand next to him. He did not NEED to hold my hand.

I did not need to stand in the trenches… the trenches of fighting battles within ourselves to move forward.

Tonight I was able to step back and watch my son from the sidelines. I was able to watch his confidence. I was able to see his joy and his independence. And his laughter…

In a world where the internet says how bad the world is?

I see a world where a senior class nominated my son for Homecoming court. Nominated my son.. a classmate who struggles to succeed every day.

I see a world where a senior class goes out of their way to make my son feel welcome on the Powderpuff field.

I see a world where a group of students will pause in the hall to talk with my son as he waits for his mom (who was running late)…

I see a world where my son felt safe enough to grow into an amazing young man..

…a world where my son has loved to go to school every day.. even though it was difficult for him to concentrate there. ..

Tonight as I took a break from my hectic schedule? I let the joy and peace from my son’s soul seep into me..

I don’t know how to thank so many people for the impact they have had on our family and most importantly on my son. They are ALL my heroes.

But I do know that today I enjoyed seeing my son be so Independent.. I enjoyed not being in the trenches of Autism…

As for my son… I’ll always be right here.. cheering him on from the sidelines..

Adventures..

Last night I took my son on an adventure. Honestly? It was the first adventure I had been on in awhile.

It wasn’t extravagant.

Actually.. it was the simplest of adventures. But it was amazing.

If I had to list the ONE thing that I thought was the least known about me? It would be how adventurous I am. I love to explore. I love to learn knew things, meet new people, explore new places..

In another time? I would have been a pioneer. Searching out new lands..

But as a parent of a child with special needs? (Ha.. actually? Just being a parent in general…) Parenting is an adventure in itself..

So for awhile? I didn’t have time for adventures.

But this week.. my soul called out for an adventure. I have been wanting to see the sunset on the big lake again.. over Lake Michigan. Something I hadn’t seen for a long time.

And I wanted something I thought my son would enjoy…

So I packed my camera.. and some extra clothes… some food for a picnic.. and we set out for the beach as soon as my crazy schedule allowed.

With a few unexpected delays.. and a 45 min delay in traffic… we arrived.. a little hungry .. and a little stressed..

But with the feel of the sand on my feet..

..and the breeze from the lake on my face..

.. the waves crashing against the shore..

.. I was relaxed within a few minutes..

And surprisingly…so was my boy…

We ate our picnic in silence as we watched the waves .. and he was completely calm.. like a peace had washed over him.

Then? Then, I talked him into taking off his socks and shoes and putting his feet in the water.. He was tentative at first.. worried it would be cold. But then he did something amazing .. he started to dance.

Often with Autism, simple things can seem overwhelming.. the beach can be too hot.. too loud.. too overwhelming…

As a parent of a child with Autism? I struggle with the balance between keeping him successful.. and challenging him to try new things. My adventure side always wants him to try new things.. but my realistic side? Well? I know realistically too many new adventures would stress him out..

But as the sun set last night? I watched a happy .. relaxed … giggling boy dance on the shoreline… jump waves with me.. asking me to take pictures..

If I had been cautious last night? If I had ignored my need for an adventure?

I would have missed seeing that happy, peaceful boy come out to play…

So with tears in my eyes I enjoyed those moments.. and these small hours will remain in my heart for a long time..

.. and I took a few more pictures..

..washed away..

With all the rain in the south, it seemed trivial for us to worry that a sprinkle of a rain would ruin our hike yesterday… so hiking we went.

Up a VERY steep hill to see the Dead River Falls..

For me?

For me .. I was going up that steep rocky hill in flip flops..

You see? I had not anticipated that we would have time to go hiking .. so I did not come prepared with hiking shoes.

But I would never miss a chance to see a piece of wilderness.

And a beautiful piece of wilderness it was. Rugged and untamed… At one point, I left my shoes behind and continued bare footed. Not as comfortable as I would have liked (and I wouldn’t recommend it). But I was able to experience laughs with my kids, see them marvel at the beauty of it and I took so many pictures..

So prepared or not? It was worth it…

As I walked back to the rickety log bridge… I saw the most beautiful sight. A tree that stood strong and healthy.. even though half of the soil was washed away from its roots ..

The soil was washed away.. Big rocks pushed up from underneath.. it looks like gravity and a little wind would push that tree right over..

.. yet there it stands.. strong and sturdy…

And it brought tears to my eyes..

As a parent of a child with special needs?

I feel just like that tree..

.. 18 years of Autism.. 18 years of tears.. 18 years of letting go of how “things were supposed to be”.. 18 years of learning new autism research.. 18 years of medical issues.. 18 years of having life wash away at the roots I had dug into the Earth…

I should have fallen over long ago..

… but I have also had 18 years of laughter, 18 years of watching this boy grow with joy in his heart, 18 years of discovering the beautiful soul buried beneath the surface…

The laughter and joy have kept me strong and sturdy… despite the feeling of being worn down..

As I pushed back my tears.. I walked back across the log bridge .. ..my son ran towards me with a smile.. and his hand outstretched to me.. and said with confidence, “Here Mom, take my hand.”

Ok Buddy… I will take your hand. And no matter how prepared we are? …we will make it strong and sturdy…

Windows

This morning .. as I made my coffee.. I let the things on my agenda roll around in my head.

I looked out the windows.. watching the world wake up around me.. a world wet from the overnight rain… and I noticed something..

Out the back windows, the world looked wet and gloomy. There was a beauty to it still, but no light.

When I walked to the front windows, I could still see a wet and gloomy world. But the sun was breaking through the clouds as it rose above the horizon. The light shining through the shadows has always fascinated me.

So as I stood there for a moment enjoying the beauty of the moment.. I noticed my dog looking out the same window. She hadn't chosen the window with a gloomy view, she had chosen the one with beauty.. and warmth..

I have often been accused of finding silver linings in every situation. And sometimes it may seem ridiculous to some to find something "good" in emergency surgeries.. or moves across country.. or your little girl going back to college..

But to me?

It just makes sense.

I simply pick the window with the best view.

Both windows this morning are realistic .. both show the wet world and the clouds..

But one of those windows shows the sunlight.. and with sunlight? We can feel the hope of the future on our faces.

So this morning, I enjoyed my coffee on the front porch.. with the warmth of hope on my face..

.. tomorrow I will likely chose the same…

Safe place..

We went to church yesterday for the first time in awhile. I love attending services.. but churches aren't always the safest places for kids with special needs.

I know.. I know.. I was surprised by this too..

You see? My son has Autism with a side order of Bipolar.. add in the fact that he is also still a kid? It can kind of be a mess at times …

When my son is distressed he quotes movies.. Blue's clues, Dora, Alone in the wilderness, Peter Pan.. you name it.. he quotes it..

…but talking in church is typically frowned on.. even if it's in the back corner of the back row by a cute boy with lots of freckles.

We have gotten a lot of dirty looks.. a lot of stares.. and shushed more than a few times… throughout the years…

The problem is?

The more shushes.. the more glares?? …the more anxious he would get… the more he would quote.. AND the more often we would end up in the lobby listening over the speakers.

So we stopped going to church for a while… choosing to worship at home.. where he was safe..

When we lived in Missouri we found a church that smiled at my son when he quotes randomly in the middle of service. They high fived him in the lobby.. and we went to church regularly…

It was amazing..

But when we moved back to Michigan .. finding a new church was a little daunting and my son was very unstable.. so we kept our services at home again.

Yesterday we attended church with some friends at their invitation. We have attended this church a couple times with these family friends and another family as well. But my son was unstable and it was still uncomfortable for us.

But this year has been a good year for us, and my son is making great strides. So? So we made plans.. marked it on the calendar like it was an appointment.. and we went to church.

We arrived at church .. my daughter in jeans.. my son in his favorite 3 piece suit.. and we were greeted by a handful of people.

ALL of us were greeted.. especially my son.. who was obviously overdressed.

The extra effort that the congregation put into making him feel welcome.. and the extra effort our friends went through ??

It meant that my son sat through the 2 hour service holding my hand … mostly quietly.

To someone who goes to church every week it might not seem like much..

But to a mom who thought church was an impossible task?

It was a modern day miracle…

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..