I alone- Parenting and ASD

When you have a child on the spectrum your whole perspective of people and the world around you changes.

I can’t speak for every parent of a child with ASD but I can speak for me and I know I have been changed permanently and I would like to think it is for the better.

When I stop and think about my son and I think about long-term how things will play out I start to feel like I need to ‘do more’ Not just for my son, but for the community I live in, people who also have loved ones on the spectrum, for the neighbors and friends, for not just my country but humanity. I want to help, because I know all too well how scary and isolating it is to be in a league of my own.

Yes, Autism effects hundreds of thousands of people, 1 in 68 children and even more staggering 1 in 42 boys.

For as many people in the community I live in that share in the experience of having a child with Autism it always amazes me how easy it is to fall into a habit of keeping to yourself, in fear of inconveniencing others, or worse, not being understood, accepted or just plain too much effort to want to be around.

I know, this sounds horrible, but horrible or not, it is a truth.

The reality is many people fear difference.

Many people are uncomfortable with any straying from ‘normal’. They don’t want to see the meltdowns, the stressful face-offs when you are trying to get through a moment or experience the stimming (Self-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders.) it’s just too odd, too uncomfortable. It’s as though Autism is contagious and no one wants to catch it.

I’ve always tried to be positive, to make the most of things and bravely face my life as it is and make the very most of what I have been blessed with but at times I must say I am not only disappointed but disheartened with the lack of thoughtfulness and support we are given from people who call us friends and family.

I often wonder if it is because its too much effort to be supportive or maybe I just don’t warrant it.

I find it hard to believe that people who are close to my family do not see how hard we work to keep things going, to raise our family, to advocate for our children and make ends meet.

It is not lost on me that the last trip I took with my partner was almost 8 long years ago and that we almost always go out without one another. It is so rare that we go out of the house without the kids that friends have stopped offer the invite.

During the tough times, as our relationship faltered, it was also left for us to piece it back together ourselves, there was no one to help us find time to work on things, we either did it or let things go to the wayside.

So we worked harder.

I’m not writing this to complain, but merely to give you all a open and honest view of how it is sometimes in a ASD family.

Sometimes it is ugly. It is raw and difficult.

Sometimes it feels like no one understands. Sometimes it feels like you are alone. And a lot of times you are.

Despite this, search for the light.

Look deep within yourself and know your love and determination will eventually prevail.

Take deep breaths. Take lots of deep breaths.

Remember that it will get better.

Celebrate the small things.

The smiles and giggles of being silly together. The hug or kind word your child may share. The pat on the back of someone who sees how hard you work.

Be kind to others. No one truly has a perfect life. We all have dragons to slay, we all have obstacles to overcome and we all need to know our effort is acknowledged, even if we struggle to stay afloat.

Help where you can.

It is a reoccurring theme that everyone feels “they don’t have time” for things but sometimes helping is as easy as a quick comment on facebook saying “good job” or “I understand”.

We don’t always get to choose what gifts we are given in life…but they are all gifts. Treat them as such.

And remember, gifts are easily shared.

 

Childhood friendship- Being one of the group ASD kids need friendship too!

Growing up my parents always embraced our friends and our house was always open to them. I was always proud of this point and knew my home  was a 2nd home to many kids…my parents, 2nd parents.

 

This to me was endearing and it taught me a lot about what is important in life.

We didn’t have the best of everything, nor did we have luxury items like the newest game console, trampolines or cool climbing sets but we were pretty well off and my parents were hardworking, good moraled people whom kids felt comfortable around and could be themselves.

This made our house popular for visits and hangouts.

Lately, I have noticed more children knocking on the door and more times than not, I come home to a friend visiting. I am happy to see my own children feel comfortable hanging with Mom and just as my own friends know my door if always open and the kettle always hot, my boys friends seem to know they are always welcome in our home.

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I am glad for these things….after all, this is what makes a house a home.

This morning while I was steam cleaning up stairs still in my pj’s I heard something I don’t often hear in my house…a little girls voice. Lincolns very kind and thought friend Abby had stopped by. I apologized for my pj’s and she came in and the boys got busy keeping her occupied. They were smitten and happy to have a new friend to visit with. I decided the giggles and happy voices were worth putting aside work that could be done later and offered to take them out for a nature walk.

She has always been a great friend to my ASD kid always patient and considerate, never judging. His differences are accepted ‘as is’ and she embraces his as he is and even better, likes him because of it.

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How lucky is a child who has such amazing friends.

He is blessed that has friends. They make us smile and hearts glow.

Back to school and the end of summer..my ASD kid and me..watch us grow!

The summer of 2014 was Lincoln’s 9th summer and he has learned to do summer right!

He has counted and treasured each and every school-free moment and has learned quite quickly what he finds amusing and interesting and honestly will not tolerate any boredom! “I can’t be bored!!” has been a recurring exclamation all summer long and I am a bit conflicted with it because as an individual my soul screams the same sentiment from deep within my brain…but as a working Mom of 4 it only reminds me of my short comings….or more accurately my shortness of free time!

I’m not the type of parent to coddle and entertain my children, I don’t see the merit of having an unrealistically abundant social and recreational calender and quite honestly I don’t have time or energy to keep my children occupied in sport or clubs from morning to night. I am employed full-time I have 4 hours of commute per working day, I work opposite shifts to my spouse and I am always alone with my 4 sons every weekend. If I kept my kids as busy as most parents feel they have to I am pretty sure I’d be dead by mid-week.

Lincoln though, has matured and gained a more complex thought process. He wants to explore the world, feel, smell and taste it for all it is. He wants to be free to roam, laugh and play as he deems fit. And at 9, who doesn’t?

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I found myself really torn at times when I wanted to foster independence but was leery that my boy was ready to embrace it, or that he could control impulses that made trust and independence too dangerous to give. When we walk places, or visit parks or public beaches I try to give him more roaming room but it is difficult to know what may spook or tempt him and I often have to trail close to  ensure his safety.

We have allowed him to venture up to his room, stick his self-made “Do not Disturb” sign on the door and have some alone time. A small thing, but in the world of Autism a big step. This was always too dangerous to allow Lincoln to be someplace alone. Too many possible dangers, even in a house babyproofed passed the point of sanity.

 

27We have spent much time at parks with friends, out playing with others and enjoying the moment for what it is. I have literally been all over Durham region, never going to the same park two visits in a row, keeping the kids happy and busy.

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We took the time to visit new places that the kids will all enjoy and learn from. The aquarium for Lincoln full of Sharks and Rays, fish and eels. My ASD son was in his glory spouting facts and interesting anatomy details about all the exotic creatures of the sea, ocean and bodies of water on this wonder Earth. A few sporting events, a museum or two, lots of water parks.

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“I want to have a beach day! Like last year, remember how great that was Mom?” I smile at my boy, who is gazing up into my face, eyes imploring mine for an answer, though, no longer gazing so far…my son is growing tall…he is not so little anymore.

“Yes Lincoln, beach days are so fun!”

So we pack up the family and we head out to the Sandbanks or Sandy beach and we frolic in the waves or wade in the stillness of the warm summer water. I watch the kids bob and surf on the water and smile and giggle. I watch my boy enthralled in the joy of childhood and I know he is happy. I am happy.

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When he asks how many more days till school starts I hear the trepidation of the new school year and I feel the dread seep inside my heart.

“Lincoln, this year will be a good year”

“I just don’t want to go to school, can I not live in the forest or with Grampa, they don’t need to go to school. I can’t leave my safe, comfy house!”

“If you want to be a farmer, you need to be smart Lincoln. You need to know how to take care of the animals.”

He seemed to accept that, and the visit to his school and to meet his new teacher went ok but the night before school began he snuck into my bed in the middle of the night and held my hand as he slept much like he did when he was 2 not 9. I knew he was nervous, I understood he was scared. I help his hand until morning and hoped for the best.

School has started out well, no huge stumbles or complaints and I am proud of my boy for it.

This morning I was lucky enough to have a quiet breakfast one on one with Lincoln. Over french toast he asked me “Mom, what would you like to do today?”

“Well” I said, stretching my arm over my head and resting it on the back of the neighboring chair “What do you propose we do?”

“I think we need to build blanket forts! Great, big, blanket forts!”

I smile “That I can do! I use to be pretty good at that when I was little”

“You were?”

“You bet Linc. Eat up, and we will get started”

He takes a bite of his french toast and chews with a slow smile spreading over his beautiful face.

“What Lincoln? why the devilish smile?”

“I am not a devil, but I do love you Mom. You are a great Mom”

I took a sip of my tea and returned the smile.

“I guess it is easy when I have great kids”

He nodded softly and continued to eat in silence, the sun cascading through the window, spilling prettily along his profile.

At that moment I understood why at times he was quiet and introverted. There just were no words needed.

I thought of how quickly my son has grown. How his words ad actions have matured, how he has learned to be a leader and a good big brother and how to be a friend. How he sees how people are effected by things and he can weigh emotion on the face or others and offer a condolence or congratulation based on it.

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It might only have been a summer, a short 60 days but my ASD kid has gained so much from a summer at home and I am thankful for all he has achieved just being a boy of summer vacation.

 

 

Summer R&R- My ASD kid just being a kid!

“2 months of rest and no homework!”

I smile to myself as I listen to Lincoln tell me why he loves summer vacation.
He has come up to sneak under the covers with him Mom who uses her first day of vacation to sleep in past the regular 5:15am wake up.
He has actually already been up watching videos on the computer for an hour or so before anyone else started stirring and now that everyone else but his Mother and the puppy are up, he will slink up the stairs undetected and steal a moment one-on-one with his Mom.

He snuggled in, face to face with me, and I open my eyes to look into his beautiful hazel ones.
He has an adorable sprinkle of chocolate freckles across his sun-kissed cheeks and nose. He is already wearing his signature “blue” glasses (his favorite colour and a common favorite for Autistics) He pulls the furry blanket up to his chin and smiles sweetly.
“What will we do today?” he asks
“What ever you want Son. It is going to be an awesome day!”

I enjoy a few more leisurely minutes in the comfy coziness of my cocoon bed and then pull back the covers and turn to look at my 9 yr old boy who is smiling and rolling himself into the covers.
“I need some coffee, then the beach! Go get dressed.”

He runs off, and finds some clothes. He is finally getting himself dressed all by himself. He has grown into a big boy in the last 365 days. I am proud to watch my sturdy kid walk down the hall with a purpose.

We decide to pack a picnic lunch and head out to the Lake.
On the way, I am asked if we would see an American Porcupine again in a tree.
I smile to myself and shake my head.
“probably not dude. That was a year ago, I’m not sure that the porcupine will still inhabit the same tree. Maybe though, who knows”
Last year, we saw a porcupine in a tree. I had no idea that they could climb but I was quickly advised that the American variety of porcupine lives in trees. The African ones only live on the ground. I felt stupid for not knowing, I guess that might be due to the way the info was delivered from my ASD 8 yrs old. He figures I should know these things!!

The kids quickly slip into the water and gleefully frolic in the crowd. Lincoln slips out into a quiet spot and finds a relaxing moment of textile fun!

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Just as he did last year, he scoops up the cool, slick sand at the bottom of the lake and lets it run through his fingers, over his hand. He shuts one eye to focus on the muddy treasure, the feel so appealing and enjoyable. He spends half the afternoon playing on his own. He will share with a brother if they sidled over…normally either plastering them with the soothing mud or splattering it over there sodden hair.

I suppose if anyone was watching they might think he was being odd, and maybe he was. That is just the nature of Autism.

Sometimes, the things that a child on the spectrum enjoys MAY be considered odd, weird, strange of a little unorthodox. I guess to the general public it is. But if you really think about it there is nothing strange, odd or different but maybe we are just so restricted in our behavior that we worry far too much about what others may think to simply enjoy the word for what it is.

He looked at the lake and decided just to enjoy it as his senses reacted. The warm sandy under his toes felt good.

IT FELT GOOD.

Lifting the sand and enjoying it by running it through his hands repeatedly might seem odd but it does not hurt anyone, it only gives pleasure. Simple pleasure.

Sitting on the beach, watching him over the edge of my magazine full of current day horrors, The Ukraine, the obesity rate in America, the truth about sugar…I wondered who really had their priorities in check.

I folded the McLean’s magazine and instead closed my eyes and enjoyed the sunshine.

lincI cannot deny my child thinks differently.

I won’t pretend he does not act different or react different.

But sometimes I just wonder who has it right. Me, or him? Society or the small percent of Autistics in the world?

With an encyclopedia tucked down the side of the chair, pen in hand, he sits and watches you tube videos about his favorite animals.

Just look at his face.He is learning, thinking, cataloging information.

He is happy and free.

43 more blissful days of summer vacation…..

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“Go get ‘em boy!!” Boyhood crushes and chasing girls -An ASD kid in action

I remember chasing Barry and Robbie home hitting them with my Miss Piggy tote and telling them if they try to kiss me again they were toast!! I was 7.

I can still remember the feeling of the hot August sun on our naked shoulders and freckles sprouting on our flawless kid skin when me and Darren Cox used to knock on the front window of his parents house to rouse his Mum off the couch to watch us kiss for her in the big bay window. I was 5.

It is as natural as a big belly laugh or being awed the first time you catch a frog in the pond. Love.

That first awkward, silly sweet innocent infatuation.

 

So, on a sunny, leisurely, Saturday afternoon I was not surprised to watch my 9 year old son become smitten with a cute little girl who kept tossing her curly brown locks over her shoulder and climbing the monkey bars with her willowy limbs right in front of his prepubescent eyes.

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Autism has been know to hinder socialization but I was tickled pink that it did not hinder my son’s desire to vie for this sassy young things attention.

“Hi! I’m Lincoln Jude Skorochod! Who are you?”

The sweet little vixen sashayed past him, her hair bouncing on her thin shoulder. “I’m Kaylee. She’s Kristen”

“No I’m not….!” The friend chimed.

A big smirk and the girl turned and giggled off to the slide to pow wow with her friend.

Lincoln and Grayson stood speechless, watching the girls with wonderment. Their little brother, only 4 was immune to the girls power of mesmerizing and continued to crawl on all fours, barking and panting as he played “dog”.

After a few seconds ticked by Lincoln looked wistfully over his shoulder on last time then it appeared an idea had hatched in his mind. He strode over to Bishop.

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“Hey boy! Atta boy! Go get the girls! I like THAT one! (he pointed) Go get ‘em boy! That a boy!”

I nearly spit out my Chai latte.

The girls pretended they didn’t hear but a big smile snuck across their pretty faces.

BIshop barked happily and crawled off towards them.

Ah! First love.

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So glad Autism did not interfere with this fantastic experience!! And thank god for baby brothers!!

 

Fish Killer -When an ASD curiosity ends in upset.

“FISH KILLER! You Son are a bone fide Fish murderer.”

I admit now, the words were harsh. Look at them. Killer. Murderer.

On paper, it looks even worse.

I am not a mean person by nature, not for enjoyment and I’m pretty sensitive to how people might feel when you speak to them and I definitely do care that my kids don’t gain complexes that will cripple them for adulthood and curve off the life they “COULD” have had if they just believed in themselves.

BUT, I am also obligated to raise my children to be kind and caring.

To value life, any life. No matter how small or insignificant.

Afterall, how do we tell them apart? Who has the power to dictate which life is unimportant? certainly not me. certainly not a 9 yr old boy in the middle of suburbia.

“Lincoln killed Gray’s FISH! OH MY GOD, he killed it!”

That was my cue to get up off the couch I had just settled in after my 12 hr day and making dinner to see what was amok in the livingroom.

I found my son red-handed. Holding the bag, or shall I say bowl. In it? As promised, one very dead fish. Belly up. Assume the position. Good fish.

“I only meant to hold it!” he explained.

“Lincoln! you cannot hold a fish. You hurt it.” I tell him calmly. I bend down and take a desperate once over, hoping for a gill wag or tail flip. Something.

The bowl is deadly calm.

“hum. Well, it does indeed appear to be dead”

“So what?! It is JUST a fish!” Lincoln says.

I turn to him and take his hand, a little less than poised I turn him to me.

“Lincoln! It matters a great deal. This was your brothers fish! He had to work hard to earn the right to have a pet fish! He will be sad that he is dead.”

“Yeah, yeah! so what!”

I stood staring at my child. Autism or not I was appalled that any of my kids would be so nonchalant about a death.

“Fish killer” I said to him.

His eyes grew wide.

“That is right, son, you are a bone fide fish murderer! I hope you are proud of yourself!”

He then looked down, and looked sad. Score one for Mom.

“Lincoln, I know it was not your intention to hurt the fish, it was an accident, but Son, you have to be gentle and you need to listen when people tell you NOT to do something…it is for a good reason”

“Ok MOM. Grayson I am sorry”

And with that, we said our apologies. we hugged in grief and we flushed good-bye to Bob 2. He was a good fish.

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The next night I went to a basketball game with one of the kids and did not see Lincoln all day. The next night we had a birthday party at The Rat. Chuck E Cheese.

At the end of the party I asked Lincoln if he wanted to drive home with me (sometimes it is nice to have a little one-on-one with him he is a great car conversationalist if given the spot light) He accepted my offer.

I offered to grab him a burger and me a coffee and as we exited the drive through this perfect little voice broke the silence.

“Mom, are you stlll disappointed with me?”

My heart squeezed tight. So tight I know I couldn’t muster a breath.

“Oh honey! why would think that?”

“Because, I am a fish killer. I killed Graysons fish because I didn’t listen to you”

“Oh Lincoln, I am sorry, I didn’t mean to make you worry about this. I just wanted you to know that it is not ok to kill anything. I love you honey. I’m not mad, just sad it happened.”

“I won’t ever kill a fish again Mom”

I have to admit, I cried.

But when he said that I know that I did not regret my words.

He got the lesson, and he understood that regardless of your intentions you sometimes have to take heed and trust others advice. That life IS precious. Even a Beta fish names BOB 2.

I do regret not being considerate enough to think that perhaps my words would trouble him. I had been unavailable for almost 36 hrs and my poor boy had been troubled about my opinion of him for that time. Maybe he didn’t know how to ask others if I was mad and I didn’t give him the chance to ask me himself, which, BTW I applaud him for being brave enough to be forthright and ask me if I was disappointed.1503902_10152104369576276_637521262_n

A lot of adults still can’t do that. A pretty big accomplishment for a child with autism that is supposed to have problems recognizing emotions and voicing them.

I never thought myself to be perfect. I do try to do the best for my kids and every experience I draw strength from and learn from. He shall teach me how to be a better Mom as I try to teach him to be a good boy and great man.

 

 

 

Do unto others….

“Hey big ears! Those are a real good ears you got there! So BIG!!!”

OMG.

I think I just died. And then, I look over my shoulder at my 9 year old son tormenting an elderly man because his ears are a tad on the large size in a very crowded milk fridge of the Superstore on a busy Saturday afternoon with his three brothers in tow and I just wonder why I was silly enough to venture out feeling brave and optimistic that I can do it all alone!

I quickly snatch my ASD kid by the jacket sleeve and pull him close.

“That is not very nice! How do you feel when some makes fun of you? That man has no control over the size of his ears, which are perfectly fine by the way, but you do have control over how you treat others!”

Lincoln looks at me and says “but they are HUGE!”

I stare helpless at the man, and hope he really isn’t listening. He seems to be caught up in the milk and not listening to me.

“Lincoln! It is not nice to point out things about people like that. It can make them feel sad. DO you like to feel sad?”

“I’m sad when you won’t let me use technology!”

“That is different. Be nice to people. Remember to make them feel happy, because you like to be happy…they do too. No one wants to feel sad because you are making fun of them not for who they are but how they look.”

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All my children are at this point standing around listening, and I see across their faces they are thinking.

I straighten up, close my eyes and take a deep breath and regroup silently.

Lincoln turns and looks again at the man but this time says nothing.

I smile to myself and herd my group to the frozen foods and pray that they learn to do unto others. One of the best things you can be is open and accepting in life. I want all my children to know that we are people, with feeling hearts and thought-filled minds. We all want to be accepted, we want to be appreciated, we want to be allowed to be us without labels and stereotypes or to be judged or ridiculed.

For as much as I worry that my son will be teased and bullied it hurts me more to think he could be a bully himself. It would break my heart for my kids to be piteous and cruel.

“Treat others as you wish to be treated” I repeat as I buckle my little one into his seats and kiss his nose softly.

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“yeah, cause no one likes to be sad” Lincoln chimes in.

I smile to myself as I shut the van door and walk to my door.