Becoming an individual -Watching my ASD kid bloom and grow

If there is anything I would fight to the death for it is my right to be my own person.

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I am thankful to have parents that have stood back and allowed me to walk my own path, even if they stood brimming with trepidation and worry through much of my teenage years. I do believe that as I approach 40 they are proud of who I have become, as am I.

I will never be considered conservative or the “norm” but I do believe I ended up on this side of “normal” with a decent head on my shoulder, a brave soul and a loving heart full of kindness. That will do in my books.

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As a Mom of 4, I try to allow my children some creative input in who they wish to be and although I sometimes am a little militant in what rules I feel must be followed, I have also allowed a lot of flexibility on some of the others.

As Lincoln turns 10 and starts to extend more into the world around him I try to let him choose how he wishes to make his mark on the world. He is a loving and humorous boy, full of curiosity and I try to embrace that and let him run with it as he chooses.

9When you have a child with special needs there is an overwhelming urge to protect them. I cannot even put into words the need. I would wager that it is comparable to a mother bear being faced with a group of hunters. The urge to protect is primal. There is no thought to it, just action.

My natural instinct when it comes to my autistic child is to protect. I want to keep him close, and dare I say it, there is that silent voice deep within me that whispers to me to “make him better”. I fight these instinct everyday for the greater good of my son. If I always protect and always baby him he will never be afforded the chance to be his own man, to see if he can go it alone.

So I must step back and wait. And watch. And hope.

I refuse to take away from him what I so desperately hold fast to. Individuality.

So, I go against my primal urge to protect and I give him freedom to explore, to decide how he wishes to interact with family and friends, with strangers. I sit back, forever ready to pounce into action if needed, and I allow him to grow.

I have been rewarded for this exercise in patience. I have been given a beautiful gift for my effort.

My son has blossomed into a lovely little boy. He is friendly and kindhearted to other children, with a special enjoyment of babies.

As we all know conversation is hard with a kid on the Spectrum. Eye contact is limited and interest sometimes focused solely on the childs likes and not the world going on around him. This is a heartwarming pic of my ASD cutie talking to his Aunt about his new baby cousin.

As we all know conversation is hard with a kid on the Spectrum. Eye contact is limited and interest sometimes focused solely on the childs likes and not the world going on around him. This is a heartwarming pic of my ASD cutie talking to his Aunt about his new baby cousin.

He is a fountain of knowledge who is always willing to share and comment on.

He is affectionate and loving. Even now, I am blessed to have him sneak into my room on a Sunday morning and tell it is time to snuggle. It is often these very mornings that I have bestowed on me something that is irreplaceable. A conversation.

When he was little, conversations just didn’t happen. Eve though he spoke well, and often, it was always one sided or just me giving direction and he answering. Although I understood why, it often broken my heart.

I knew though, in time, it would come. Just like in time, he would find himself. He would find the boy he wanted to be and that would be something the world would be thankful for.

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I am proud of all my children. They are wonderful boys with great personalities but I am especially proud of my first born for never letting anything change him. He is a diamond and he will sparkle for the world to take notice.

 

10 years on the spectrum. Finding a sense of Self as an ASD Mom.

If I were to be honest, I feel more confident, sexy and sure of myself at 39 then I ever have.

Sometimes people ask me how I do it. Actually, they ask a lot.

I smile, “I just do. I am thankful, I haven’t ever known any other way”

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This is me.

I am a working Mom of 4 boys, my eldest having Autism. I commute 4 hrs a day, work 7 in the city and then come home to make dinner, clean the house and love my kids, not in that particular order.

In 39 years I have made myself.

I have grown a style, created a persona and nurtured a sense of humor and kind heart.

My patience has learned to sail us all on the sea of life that at times is tumultuous and frightening, and others serene and calming.

I have protected my sense of whimsy and encouraged my moxy.

I am bold and pure and true to myself. I let it all hang out, I am a library book, free to peruse and ponder and maybe settle in for a read with the promise of a giggle, a smirk and an adventure.

I have been an ASD parent for 10 years now and with every struggle and challenge I have found independence.In each road block I have found a new appreciation, determination and alternate path worthy of considering.

Yes, oh hell yes! I am confident.

Don’t think for a minute I haven’t earned every once of that. I OWN it.

We all have that choice and it starts from diagnosis.

You can lay down and let Autism beat you or can accept it, find a strategy and evolve with it. Evolution is mandatory, if you do not change and grow with it then you are letting it beat you right from the gates.

Every day I choose to be an individual. I am a mom of an autistic child but I am also many other things. A friend, a lover, a companion, a co-worker, a daughter, a sister,a confidante, a partner in crime (the playful fun kind of course), a secret sharer, an admirer, a shoulder to lean on, a free spirit, a voice of reason, a giggling lunatic who can’t catch her breath and laugh till she cries.

Autism will not define my child and I’ll be damned if it defines me.

I may not be able to decide how my child grows, thinks or reacts to the world but I can make HIS world wonderful.

I can let him be himself and show him it is ok to be different by being unique myself.

I can walk the walk I ask him to, I can be bold and extraordinary, I can stand out, draw attention and be forward. I can smile at strangers, I can hold doors for others, I can stand out in the crowd. Best of all I can do it with pride as I ask him to do.

IMG_20150110_205156IMG_20150126_20201522229IMG_20150126_201927IMG_20150118_1106284If you are new to Autism and you are reading this, please, know it will get more comfortable. Autism is like a new pair of shoes. They can be restricting at first, unknown, make you feel awkward and unsure but with time you will grow to feel as ease, learn how to dress them up, show them off and dance the night away in them!

Do yourself a favor and learn to allow yourself the same privileges as your child. Find something each and everyday that makes you feel alive, lets you shine and define you as YOU.

The best example you can give your child is living as you wish for them to. Afford yourself the same opportunities and remember to enjoy each and everyday for the true blessing it is.

A rainbow would never be beautiful if the storm that precedes it didn’t rage. Take everything life gives you and learn from it. Grow from it.

Write your own story. Do not let other people dictate it. You have every much a choice in how your tale reveals itself. Make your own happily ever after.

With ten years on the spectrum under my belt I feel like I can do anything, be anyone and appreciate each day for all beauty and wonder. (yes, even the not so great ones!)

Every night I get to place a soft kiss on my beautiful children. I get to feel the love we foster together in our home. A home of acceptance and support. One of belief in one another.

I have someone who doesn’t care if my ass may be more than ample, or I am not conventionally beautiful. I know I am admired for the woman I have grown to be, that my children think I am pretty awesome and people are happy to be in my company (ok, maybe not on the grumpiest of days, but for the most part)

Sure, life isn’t easy but anything worth anything isn’t.

Autism has not made me, I have made me. My life just includes a little ASD amongst the fab, the great, the mystical, magical obnoxiously awesome and I am tickled to be part of it all.

And quite seriously, I am humbled by it.

And, as always, I am blessed to be part of it.

Writing this blog has helped me share the emotion of Autism, and if I am honest I often cry when I re-read these posts. It’s not because I am sad more because I am proud of all the accomplishments my son has made. The cohesion my family has displayed. The adversity we have faced and the barriers we have removed. My heart at times is overflowing with gratitude and love.

Happy Birthday Lincoln.

I am so very proud of the amazing boy you have become. I am in love with your crooked smile and questioning eyes. I love your belly laugh and warm hugs.

Thank you for being my son and making me feel like the luckiest Mom in the world.

Well HELLO, 2015!

“Hi Mom, here’s 2015!”

I felt his not-so-little anymore body press between me and the little mini Dachshund we have who was snoozing beside me.

“Well Hello!! 2015.” I murmur and smile to myself.

My almost 10 yr old Autistic son was not on the band wagon last night to see 2014 off. We celebrated quietly at home, rather as quietly as a house full of boys allows, and as we hugged and kissed each other with wishes of a good 2015 he broke into tears.

“I don’t want 2014 to go away, it was a good year. Why does it have to die?”

Here we go again….

The same thing happened, this same afternoon as I took down the ornaments off the tree which inevitably leads to the tree being placed at the curb for recycle pick up.

Christmas tree 2014

As we have learned about of sensitive son, he is jammed full of emotions, and each are tied strongly to the object which symbolizes the holiday. I have had issues with a larger than expected reaction to the shedding of objects before but as time passes I seem to forget how intense it can be.

As I gently undressed the tree I explained that if we did not end Christmas then we could not begin his January birthday, Valentines Day or Spring which leads to a busy and adventurous summer.

While we love to celebrate and enjoy our friends and family, Christmas lives in our hearts all year round and we must not be sad to pack up the ornaments and decorations because we are never truly without the memories and we should live our daily lives with that happiness in our hearts to gift to others.

He listened and continued crying but eventually asked to help.which I agreed. This was a very mature response for a 9 year old.

He unraveled the ribbon, took down the bows and packed them up with the Santas and angels and then told me “it was a good tree, the best” and nodded at the bare tree as if to confirm to himself that his words were correct.

He then surprised me by telling me he was going to go ask his brothers (who were as always, wrestling bare-chested in the other room and quite oblivious to what was going on with the tree) if they would like to have a moment with the tree before we removed it from the house.

It was very funeral-like and his demeanor was soft and  brimming with condolence. THe children humored him and came to briefly stand by the tree and listen to Lincolns eulogy “It was a really great tree, we are going to miss it” and he seemed at peace at once and even assisted with holding the door as I dragged, yanked, swore, bitched and pulled the tree out the front door with a “pop” and struggled with the big monster down the walk ,to a final victory once I plopped it at the curb.

Boys watching "A Christmas Story" Christmas Eve 2014

The tears at midnight were similar so we treated it similarly. “The sun has made a full rotation around the Earth, it is the Earths birthday now it is a year older! 2015 brings opportunities for a new Christmas, a new summer and 365 new days of fun!”

“but I am so sad! I don’t want 2014 to go!”

“It will never go LIncoln, it is a part of us, our history”

We back and forthed a lot, lots of big dramatic tears (I think Autistics would make excellent actors or actresses) and finally 2014 was laid to rest with such fine years as 2000. 2005, 2006, 2008, 2010 and of course the artist former know as Prince’s favorite and the one we always to  party like …”1999″.

Maybe it was just he doesn’t accept change well, maybe it is that the fear of the unknown is a little unnerving to us all but he chose to vocalise it, as my ASD kids tends to do when others do not, but I felt that his reaction to the dying year and the one just moments old, still innocent and free of prejudgment and still holding excitement and awe, was pretty prolific and he was very astute to feel such way.

This morning he woke up with well wishes and hope for a fantastic 2015 as did I.

Enjoying his Zoomer Dino Christmas morning

Enjoying his Zoomer Dino Christmas morning

TO my friends and families on the spectrum, may you find peace and hope in 2015 for better days and understanding.

May you enjoy your child ‘as is’ for he or she is beautiful and perfect just the way they are.

May your love and devotion guide you through the inevitable ups and down of life, may you see all of said ups and downs as lessons and step stones to a better tomorrow, not punishment.

LIfe is yours for the taking, life is full of mystery and it is yours to take goodness from every day.

Autism is a part of you, you are a part of it. Be one, be wonderful.

Thank you for following me in 2014, can’t wait to see what 2015 holds!

Welcome 2015.

Blessings!

Amanda and Family :)

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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