Scary moments and sobering reflections ASD parenting moments

Summer to my boys revolve around beach days and running around half naked a lot of the time and yesterday was one of the days we packed up and spent a few lazy hours at the lake playing and sunning and being carefree.
I specifically choose the water by how easy it is to monitor Lincoln as he is a water lover and often wanders so I like a small beach where the water is shallow and open so I can watch easily and find him quickly when I'm sitting at shore.
His brothers frolick and play in the water together and Lincoln always is close by plAying in the gentle waves or with the sandy mud from bottom of lake which has always captivated him even as a little boy.

It's easy to spot him.
So when it wasn't, dread hit me hard.
I stood and surveyed the small beach. The reeds he likes to play in, each clump of kids in the water. His hand and body motions often give him away.

Nothing.

I quickly enter water and perfunctory like call him name but know I won't get an answer. He almost never answers to his name, I chalk it up to ASD and he doesn't feel a response is required. As I move out to the deeper water my mind in nagged with guilt.
What was I doing that really was all that important? Yes he's 12 but he is still my boy and he is mine to protect. Did I fail him and now he's gone?
Each second ticked by torturously slow as I searched, questioned his brothers and willed myself to stay calm. He has done this before, not in the water but the open fields at a ball park, the forest by our house.. he is eerily quiet and stealthy when he is doing something he shouldn't.
Minutes pass.
My heart is so tight with fear I can barely breathe. I feel tears well up but I choke them back and I call out once more and the panic in my strained voice is audible.

"A few boys are way over there by the cottages following a water snake" a lady offers in response.

Instantly I am pacified.

I smile and thank her and although I cannot see her I know my boy is there and all is well.

Although many yards away, Through tree branches I catch a flash of his swimming trunks and word my call to him different to encourage a response.

"Lincoln stop following that snake and come back here!"

I see the figure tense and pause and I know it's him. I relax finally.
"Right now!" I add.

He moves out into the water and finally I can breathe.

"There's a water snake!"

I am torn between smiling from the boyhood exuberance and scolding him for scaring me. I answer with a "thats so cool! But I though I lost you. You cannot EVER go off like that again unless you tell someone first. Lincoln I thought you drown!"

And I did.

I truly searched the endless water thinking 'how will I find my boy in time' and cursing distractions that steal our attention and time even for a minute… because a minute is all it takes.

The most sobering thought though was 'am I a good mother' because it is often this battle of mom vs Amanda that is so hard to balance and perfect.
Being a Mom and still being an individual is a terribly difficult balancing act. You question yourself constantly. Allowing your children independence and stepping back to let them make decisions is a balancing act as much as releasing yourself to be a person so you don't end up with an empty nest and regrets that you gave up on you.

It is hard with an Autistic child to give independence as they are often unpredictable. At 12 I know I must empower my child to think for himself but it is so challenging, and sometimes you cannot undo choices.

I was glad to see his smiling face bob in the water with his brothers the rest of the afternoon, even is I insisted he stay a bit closer to shore.

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Your typical ASD Sunday Morning. Coffee, videos and French toast.

My ASD boy is 12 now. He stands 5’1 and 130 lbs. he is no longer this little boy in who stole my heart and forever changed my life in an instant.

It’s hard to remember those days.
I can recall blips and moments but to be honest time whirled by with four little boys running around and I didn’t really have time to enjoy much more than a sweet cuddle as I tried to put one to sleep or a laugh when they did something cute or a acknowledging glance of wonder when I watched them do the amazing things children do to amaze us and make us marvel that they are ours.

Today my boy is a constant source of enjoyment. He is his own person and it’s amazing to watch.

He likes music and often picks up my phone when we are in the front seat or car (he’s finally in the front) and switched the playlist to his favourite song (Believer- imaginedragons) He has a wicked sense of humour and often cracks jokes to amuse us or “roasts ” his bros! And he is helpful and kind, able to put out the dogs for me if running late or clean up the toys… even if they aren’t always his.

There were days where I was afraid to even think “I can’t do this” but here we are. Fairly well adjusted and enjoying life.
Remember achievements are limitless but, they do take time. Even the smallest progress is still progress. And don’t undervalue it.

Last weekend while I relaxed at my parents watching baseball and kicking back I caught a glimpse of childhood. Lincoln smiling and playing with his brothers, just a kid on a Sunday afternoon and reminded myself my life was full of blessings and to be thankful for every one.
This morning I woke to make French toast (Lincolns favourite) and bacon (everyone’s favourite) and just sat and enjoyed the moment. Sunday morning in out house is lazy and lingers. It’s the perfect opportunity for hugs and smiles and the simple enjoyment a family offers.

Take a moment to enjoy yours!

Surviving the Holidays… Asd kids, diabetes and us!

About a month ago our world turned upside down in the middle of smooth sailing, as we unexpectedly received a diagnosis of juvenile diabetes for son numbero dos.

3 days in NICU out of the blue can turn your life upside quicker then you can say ‘blood sugar’ but perhaps being a mom of a kid on the spectrum had me better prepared for it.

Being home alone with 4 kids on a Saturday in my Peg Bundy cheetah print pants and hoochie hoody left me dressed completely inappropriately for a trip to the E/R, ambulance ride and one way ticket to Sick Kids but it did nothing to rattle me. I am predisposed to thinking on my feet and adapting quickly to change. I am a parent of a child with Autism. This is my life…totally got this.

After watching my completely emaciated child stripped down to his skeletal shell, eyes sunken, face paler than ghostly, hooked up to lines and monitors I took a deep breath and simple went with it.

listened.

watched.

prayed.

Hours  blurred into days. My core stayed strong. I trusted. I went with it.

By day three when my son was finally strong enough to leave bed and snuggle on the uncomfortable couch simply to be out of bed and lay with me (he instantly fell back asleep) I asked the nurse with sincerity “is it just me or is this really not that bad but merely something to adapt to? I mean, with an autistic  son we are so use to just finding a better and alternative way to do everything everyone else does. I think this is the same. Our schedule changed, we plan differently. So what?”

A month in and a major holiday under our belt, I feel we have this under control. The bump in the road maybe spilt my coffee but we salvaged most of it.

One new issue we faced this holiday season and as Lincoln having difficulty settling in Christmas Eve and sleeping. He started telling us he was ‘Nervous’ about Santa around 7pm. I really didn’t listen… I had a house full of people and had just served 3 different dishes and I had a kitchen full of dishes and 4 rambunctious kids dancing around wanting to open presents.

He has always been a great rule follower. Christmas Eve we put out cookies, you got to bed VIOLA!! Santa enters, stage left.

This year, not the case.

Mom wraps all presents while watching Bad Santa (Are you fucking with me???) then tidies up and goes to bed, snuggles Dad and 1pm comes.

3pm Lincoln gets up, wakes up his three brothers and ever 15 minutes or so she’s woken up till 7am.

Moms not a morning person … it’s an interesting morning.

The day is a perfect one regardless of starting out rocky and we enjoy our time together but as we settle in at night to watch old episodes of The Sopranos I smile to myself and think ‘nice try Autism’

We adapt.

Thats what an ASD family does.

Happy Holidays Everyone. To a year of adapting and succeeding. Being Awesome because of, not despite the bumps in the road!

Time to be you! Being an original Mom on the ASD spectrum. 

One of the more challenging things about being a Mom, much less a Mom of a child on the spectrum is finding time to find your own fashion.I can hear the consortium of groans, or the mumbled excuse of “I just don’t have the time!” already.

 

Ladies, I implore you, you deserve the few extra minutes to feel GREAT about you.

 

It is not that hard.

It is not extra effort.

It does not cost you more or have to be expensive.

 

The return on your effort is priceless, and it benefits everyone!!

 

For any of you that do not know me I am a working Mom of 4 boys ages 6-11. My oldest son had Autism.

We are your typical middle class family. 2 dogs, 2 cats, 4 kids. Mortgage payments, bills. WE live smack dab in suburbia on the outskirts of Toronto.

 

I have a 2 hr commute to my job downtown where parking is $20 a day and lunch is an outing.

We don’t bother trying to keep up with the Jonses because who can afford it? And who wants that anyhow. I’m a simple person, with a flair for anything un-simple when it comes to presenting myself to the world.

 

Fashion is your chance to show the world who you are. People have a ‘personal style’ that speaks for them. Have no style, is still a style and perhaps send the wrong message. Lack of time may convey a message of lack of confidence, lack of interest or lack of creativity…which are just not true!

 

Here are a few easy tips to feel better about you!

 

Make your clothing choices matter.

 

Getting dressed takes the same amount of time regardless of which pants, top and shoes you put on. Take the time them to have clothes that fit well and are interesting and up to date. Try variety in colours, fabrics and patterns.

Don’t be afraid to step out of your comfort zone to try new things. 
Every time you get dressed you can recreate your look!!!

Try asking someone you don’t know about clothes you try on to get a fresh view point or a friend that will be honest. Know your strengths, and compliment yourself when you look nice. Even super models look bad in something’s….know what suits your body. As is!

 

I’m curvy, and big.

I’m not going to lose sleep over being on the high end of the size rack, I’ll simply find clothes that flatter and then ROCK THAT OUTFIT! And I have to tell you, it feels great to feel beautiful in your clothes.

 

Don’t worry about labels or cost, just makes sure the fit is right.

I have a pantsuit that cost me $8 at Walmart that I get complimented on every time I wear it. When I say “Thanks, its Walmart!” I often get “well don’t tell people!!!”

But I happy to. It proves you don’t need to break the bank to look good J

 

Don’t get hung up on a size. Im sometimes 2 sizes bigger or smaller depending on brand. Don’t sweat it. It’s a number and no one is going to care if you look good. Fit is most important.

Don’t wear baggy oversized clothes to mask things you don’t like or wear black to feel slimmer. It doesn’t work. All it does is make you look frumpy and unhappy with you. 

YOU are great! You have nothing to hide.

Pretty colours and prints and well fitted clothing will make you look chic and slimmer than the baggy sweats and “I give up” dresses.

Wear a bright, happy colour and improve your mood. Also see how many compliments you get from others. They enjoy happy as much as you!!

Both of these tops were  inexpensive but regardless of how often I wear I also get compliments on them 🙂

 

Mothers have stretch marks, have not so perfect tummies after carrying children inside them, they have flabby arms and jiggly butts.

If you don’t, good on you!

If you do, Well, you’re like millions of other Moms. We have to let this go. You are not going to be perfect if you sit and pick yourself apart body part by body part.

You are PERFECT just the way you are.

 

Always Do you hair!!!!

 

We have a nation full of beautiful heads of hair that never see the light of day. They are trapped in a scrunchie indefinitely.

A high pony tail sexy- a haphazard pony tail …not so much.

Throw a brush through those golden locks OR consider a was hand go “cut” that is easy to do and looks like effort.

 

My hair cut is not for everyone but I can cut it myself AND it fast in the am. I give myself ½ h to get out the door and I always have hair and make up done.

 

ALWAYS wear mascara and lipstick. 2 mins is all it takes. And gives your face life. J

You can’t feel grumpy when you look pretty!!

 

GET RID OF YOUR GUILT!

 

A lot of parents feel guilty for caring about their appearance and outfits.

 

Your kids look to you when the decide how to be people. Show them you are proud of you and you matter.

We teach them to love themselves and to put their best foot forward. Have FUN with your clothes and be an original. After all, our ASD kids are original and we love them for it!

 

Be a good role model for that. Be you. Not a tired old version of who you used to be.

You deserve it!!

We are all just trying our best. Life as an ASD parent.

I was giggling and expressively finishing my story, arms wailing and haphazardly climbing the curb in 5 1/2 inch neon orange heels with my mind on ice cream and a smile ten miles wide, as I often have when spending time with a very dear friend.

“I have to say hello” a woman says to me from the the door or her car in the parking lot. Friendly kind face, a knowing smile. While I could have been on guard being stopped in a darkish parking lot I knew that she was friend immediately.

We stood and spoke a few minutes. I had been recognized from my Husbands Facebook site Ink4autism a Facebook group for parents, friends and ASD people.

She told me she was also an ASD Mom and told me about her great kids and how she enjoyed the site.

I gave Jack the well deserved credit for his labor of love.

When I went inside and sat down to enjoy my childhood delicacy I smiled and felt that great glow of being part of Something special. And I am.

Motherhood with a child on the spectrum is a secret knowing. There is a component of the journey that is just different and you truly have a bond with other parents that despite wanting to a non ASD parent can’t.
Sometimes we draw upon each other for strength. Others times understanding. We celebrate the wins and know just how pivotal and powerful they are, even when they seem insignificant. Especially then.

We are never alone.

As we struggle and persevere in an ASD world that sometimes seems dark remember you are never alone. The world is coloured with so many of us. Your community is highlighted with so many people like you that understand your fight and support it.

It took a late night run to DQ for me to be reminded of that but it was a gift I’ll hold with me always.

Autism again gives gifts and I count the blessing.

Madhouse or Oasis? Life on the spectrum

It can be an utter madhouse, a cacophony of loud voices, background noise, clutter and action or the purest form of beauty. The innocent timbre of a child’s wonderment, the tinker of unabashed laughter, the joy of watching them interact and learn from thier environment, the loveliness of childhood in its purest form.

Im home from a long day of work and I’m hungry so I decide on one of my childhood delicacies, a peanut butter and banana sandwich and stand at the window and watch the six children in the frontyard play the classic child pass time- a game of tag.image

Regardless of how many times I’ve warned the kids to stay off the road I’m leery as I permit the littlest one to join in the fun but I also don’t want to coddle him too much so I stand back and trust he’s heard my warnings and he’ll heed them.

My oldest son floats through the empty hallway and peers over my shoulder at his comrades, he fidgets and I can tell he’s thinking something.

“Mom?…”

“yes babe”

“can I go out too?”

A simple request. At 11 yrs old it even seems redundant as he should be allowed if the younger boys are outside already.

 

Autism  has kept him protected. At times regular kid activities are just too dangerous without supervision. Lincoln wants permission to go outside alone or he’d ask for me to come outside as he normally does. He’s testing and wanting his independence… And I want him to have it.

“of course. Please stay off the road and don’t touch the car”

“ok”

He slides his shoes on and calls to the others.

The mere fact he WANTS to play with others is exciting, I’m bursting with giddiness that outweighs the concern.

I slowly edge away from the window. As the minutes tick by my trepidation slowly wans and I slide into the couch cushion and close my eyes as I chew my sandwich and just enjoy.

It is a tricky balancing act parenting an ASD child.

Like the circus plate spinner balancing act you must slowly add another plate in order to allow your child to grow and become self sufficient.

Each spinning plate precariously turns on a ridiculously thin post, your child will venture out with the hope of being “just one of kids on the block” and the reality of it is… They are.image

The days it is a madhouse I reflect back on these simple moments and draw strength and on the days of childhood simplicity and beauty I smile and thank God for giving me the gifts I have been blessed with in my children.

And If my days are full of children playing tag out my window I will never want for anything.

Enjoy the simple things. They are the foundation of greatness.

My ASD kid still needs Mom hugs

As a busy working Mom I sometimes depend on my children to be responsible for themselves more and more as they grow and with that increased responsibility I suppose at times I forget they still need me. Perhaps, even more than ever.

As babies and toddlers I always snuggled and cuddled them. I always had my arms full of boys and a child on a hip… Sometimes both.

with independence comes a change in maternal coddling. You sneak kisses and hugs when you can but you loose the strings and allow your child to venture out on thier own, with held breath, hoping they down stumble or fall. So similar to those first trembling, unsteady steps as an infant.

My autistic boy is 11 now. He stands just shy of 5 ft and weighs in at a solid 120 lbs. He has a robust vocabulary and unquenchable thirst for knowledge. He is funny and sweet. He is sensitive and kindhearted. He comes in minutes before my alarm to mother hen me and make sure I get out of bed in time for work before he goes downstairs to take in a few of his favorite cartoons before school.

The other day he was under the weather and asked to sleep with me. I said ok and he climbed into bed. He kept pulling my arm over him and I asked softly if he wanted me to hold him.

“Yes” he answered warmly “you give the best hugs”

linckiss

The tears welled in my eyes instantly and i held him tightly to me. Rubbing his back gently.

 

“arn’t hugs the very best Mom?”

“Yes Lincoln, they really are”

They may grow. We may I courage them to be independent, but they will always be our little ones. Needing love and encouragement and just simply thier “Mom”