Playing it Safe or Brave Experiential Learning?

For me, Summer is all about finding ways to have fun with family, entertain the children and prevent them from squabbling/hurting themselves, whilst keeping my stress levels in check and my negotiation skills sharp.

I haven’t been 100% successful on all counts the past few weeks and much (medicinal) chocolate has been consumed.

It is so easy to focus solely on the constant tale-telling or the broken iPad, the lost teddy or constant meltdowns.

We become frustrated with the changeable weather, the cost of ice-cream, the juggling of responsibilities.

But when you step back and think, what changes can you identify in your child after the long break from formal education?

How have they developed over the Summer and has that benefited you too?

Maybe if they’re starting or changing school, there will be a tangible difference in their attitude, a kind of growing into the next phase as new uniform is proudly tried on, and you work on transition books or One Page Profiles in readiness.

Perhaps you have consciously worked on a new skill, such as toileting or another developmental milestone like swimming or learning to ride a bike.

That takes energy and effort of gargantuan proportions whatever the outcome.

But for Natty and Mia, the changes were more unexpected and subtle. As ever, we were all surprised by how much they have grown.

The hand-drawn chart on the kitchen wall pays graphic testament to the power of fresh air and exercise.

But more than that they have pushed their comfort zones. And mine.

Joining kids clubs where the young enthusiastic leaders seemed more like (highly trained) older siblings than adults in charge, they were treated to activities that they previously said they didn’t want to try.

To be brutally honest, activities that left me pacing with nerves until they were over: windsurfing, surfing, horse-riding, kayaking, coasteering and even scuba diving!

“We learning nothing new

from playing it safe. “

Sharon Paley

Now I distinctly remember signing a scuba permission form, and it handing over muttering the words, “See how Natty goes but I’m not keen on her doing it, what if she forgets to breath under water.”

And right there I was setting limits on my child who has Down’s syndrome.

The condition was first and foremost in my mind, despite all my campaigning to stop others committing the same offence.

I was not thinking of the inquisitive, confident child, keen to try something different along with all her new friends. The small calculated risk was overwhelming me.

And little had I realised that Mia needs encouragement and confidence to try daunting new activities as well. Being neuro-typical and physically athletic, it’s easy to forget that she too needs support.

They did it.

There was squealing and happy faces and they both stood a little straighter afterwards, so proud of themselves.

And they gained a little twinkle in their eyes and we celebrated that, rang grandma to tell her, pinned photos to the fridge, wrote about it in our journals.

And I, in turn, learnt to trust others a little more and let go of the girls, let them soar.

And it needn’t have been exciting physical activities, it could have been allowing your child to get covered in mud, or splashed by the sea, or letting them make choices about clothing or food you might not have envisaged.

Sadly, evidence suggests that people with disabilities often have the elements of risk and choice removed from their lives.

So do something new that makes you all grow as a family.

As Learning Disability expert Sharon Paley says, “We learn nothing new from playing it safe.”

That, dear reader is my definition of experiential learning.

Finally Back to School

Seven joyous hours put back into your day. Bathroom breaks are no longer a fight as to who can annoy mommy the most.

Lunch doesn’t have to be a buffet of endless options because everyone wants something different.

Besides doing nothing all day and finally catching a shower, are you prepared for a whole school year while the kids are away?

In my household, I have one back in school starting fifth grade this year.

I can’t even believe we are here at fifth grade with a ten year old! My other two are home bodies, being three and one year of age.

This year I decided to start homeschooling my three year old. My three year old, Oliver, is also my superhero diagnosed with spina bifida and hydrocephalus amongst the other hitch hiker sub-diagnosis.

Did his, “disability”, lead to my choice in homeschooling? To be honest and frank, yes. In some ways it did.

Here in Texas, for early schooling, you have to pay at most places for a placement (if they have any availability).

I had Oliver evaluated through ECI and the school district in our area to see if he qualified for any special placement of going to school for a few hours with other children of intellectual or physical disabilities.

Unfortunately he did not qualify, as he scored a tad higher than children his own age.

We also Cath my little man every three hours, and have not even begun our thought process on how that would take place while he is away at school during the day.

We were told that of course, his wheelchair, would never have any affect on his placement in school and getting around.

As a stay at home mom, I just figured I had the time and could be the first to teach my son and watch him grow.

He is just in the gray area of being too young to Cath himself and it is something I want to have time to work on with him.

Even if we resort to having a nurse do it at school, there is so much to prepare even for him having someone else (a stranger) do this private thing for him.

My plan is to homeschool this first year and see how it goes with visiting the elementary next year and how comfortable we are with sending him off for a few hours.

I definitely want him to have the experience and memories of building friendships with kids who aren’t just his family.

I want my social little butterfly to expand and succeed in all that he does. Just in our own time.

Special Needs Parenting: Allowing Yourself to Go There

He seems to keep losing hearing in the high frequencies; high pitch bird chirping type of sound.

His audiologist informed us we may need to get him new hearing aids as his only amplify up to 85 decibels, which is the sound of a passing diesel truck or snowblower.

There are days when unexpected bad news can roll off my back and I accept it without issue, but there are also days where I allow myself to go “there.”

There are days when I don’t look at the silver lining and let myself feel sorry for him.

I feel sad for him, his big brother, our family; I get jealous, angry, and have a short pity party about how unfair life can be.

I really try not to do this too often because getting stuck in the negative and feeling sorry for yourself never gets you anywhere positive.

But, hey, I’m human!

On the drive home from the audiologist I starting thinking of the “what ifs” in his life.

What would life be like if he were healthy? What would life be like if he could run out to the car and hoist himself into his carseat?

What would life be like if I could hear his little feet run to the edge of my bed in the morning to greet me? What would life be like to hear his sweet little voice say “mom?”

As I thought more and more I realized just how silly my little game was. I had to stop.

This was really going to get me nowhere and quite possibly get me stuck, “there”, and it’s not a place I want to get stuck.

Playing the “what if” and comparison game will get you nowhere.

I looked back at him on our drive home and thought at least you’re happy.

And silly, stubborn, curious, determined, brave, strong, sweet, smart, loved….the list went on and on but most of all I thought at least you’re OURS.

I know it can be incredibly hard not to compare your child to the vibrant healthy one you see at the playground.

I know it can be difficult not to visualize all of the things your child “should” be doing or accomplishing.

My nephew is nearly the same age as my son with complex medical needs, so many days it’s staring me straight in the face.

Don’t get me wrong I still occasionally go to the place of grief and comparison, but I don’t get stuck there.

You can’t. Your child deserves you to be where they are.

Be present.

Be in the moment, not wishing the days away wondering about the, “What ifs..”

Go there if you have to, but be brief. And always come back.

12 Great Back to School Supplies for the Child with Special Needs

To take the guess work out of supplies that may be an excellent match for your child’s needs we’ve provided a list of twelve great supplies that are fabulous for children with special needs:

1) Individually wrapped sanitizing wipes:

Germs. The number one complaint of almost all special needs parents worldwide. Back to school season often equals the start of flu and cold season.

Parents sit on the edge of their seats with worry as the smallest germ can often have big consequences for a child who is medically fragile.

Individually wrapped sanitizing wipes are great for your your child’s teacher or care provider to assist your child with playing with a large group of classmates or right before lunchtime.

They are discreet and easy to pack in backpacks or lunches and may just give your child a little added line of defense from those dreaded back to school germs.

2) Adaptive Scissors:

There are a variety of different kids of scissors on the market which can accommodate a wide range of needs.

There are great scissors for both right handed and left handed children, some are fantastic for children with minimal hand mobility or hand coordination and they even make fantastic switch adapted scissors for children with special needs who use switches.

A great pair of scissors can make for great inclusion opportunities during arts and craft time.

3) Chubby Crayons:

Chubby Crayons are wrapper free, chunky in size and easier to hold and come in bright vibrant colors.

Chubby Crayons are also mindful of being sensitive to children who have common allergies and are latex, egg, gluten, soy, peanut, nut, dairy and casein free.

4) Fidgets & Chewelery

There are some really fantastic fidgets and Chewlery on the market now.

Vendors are starting to incorporate more grown up objects that are less obvious fidgets and chewelery to allow children with special needs to blend in with their peers and not be singled out as having a play

object but something that is therapeutic in nature.

Some disguised as a treat or cookie, some other as sports necklaces, or toppers for pencils and pens. No matter what the right fit is you’re sure to find some great options.

5) Therapy Putty:

Therapy Putty comes in a variety of different textures and styles. Some even are scented for an extra unique sensory experience.

They are great for children working on hand mobility and strengthening exercises and also have the potential to assist children in focusing or be able to participate in art activities in school.

6) Multi-Textured Chewable Ruler:

A lot of sensory seeking children like to put things in their mouths – this is true for traditional school supplies.

This great multi-textured chewable ruler allows your child to still play with it in their mouths safely and still use it for learning.

7) Noise cancelling headphones:

Noise can be overwhelming for many children and the back to school excitement can be challenging.

For extra noisy events or loud laughter at recess noise cancelling headphones might just do the trick.

They come in lots of fun prints and styles and look just like fun head gear.

8) Nesel sensory friendly backpack:

One of my favorite back to school supplies for children with special needs is the Nesel sensory friendly backpack.

This backpack retails for $99 but comes with a host of amazing features, that will make it more comfortable to carry for a sensory seeking child.

9) Shock Proof Tablet Case:

Nothing makes me cringe more than when I see a mom or dad posting about their child’s communication device suffering a toss across a school room floor.

Accidents happen to the best of us and making sure your child’s is as protected as possible is essential.

Shock proof tablets come in a variety of colors that will keep your child’s device sound and secure when it leaves home with your child each day.

10) Rubbermaid Lunch Blox:

Kids universally seem to sometimes have issues with keeping their food separated so it doesn’t touch.

Could be that it changes the flavor profile, could be an organizational and sorting preference.

Regardless, of why you child doesn’t want their food to touch Rubbermaid has made these grate Lunch Bloxes that keeps food separate so it doesn’t touch and is super for back to school lunches.

11) Boundary Chair:

Some children need to feel a bit of security while in a seated position. School chairs don’t often come with a lot of support or even arm rests.

This simple yet low cost Boundary chair is easy to transport and keep clean and will assist your child with a little bit extra support while sitting in a traditional school chair.

12) Visual Timer

Children often rely on visual cues as a reminder of how much longer they need to concentrate or devote to an activity before they get a break or need to move onto another activity.

Visual timers are a great resource to assist your child with transitioning back into a back to school routine.

Give us a shout out and tell us what back to school supplies you think are great for your child with special needs!

Special Needs Family: Nowhere He Would Have Rather Been

I didn’t have the urge to take my son and leave. Oddly enough, I felt ok, not great, not sad, but just ok.

Our son is nonverbal, continuously tube-fed, has severe hearing loss and wears aids, and a very low muscle tone which means that he cannot sit alone, stand, or walk.

He’s also stubborn, funny, very affectionate, and extremely charming. He loves kisses, books, and his iPad.

And when he gets excited or is content he can be very vocal and flails his arms and legs all over which can be confusing to people who don’t know him.

I can’t tell you how many times we go to an event and all I want to do is retreat to the safety of our home.

Away from the stares, ignorant comments, and small twinges of sadness knocking on my heart waiting for me to release them all.

I spend time looking at other children and wondering what life would be like if our child was typical.

I watch kids his age run around while we lay on the ground together as a passerby asks how old he is, and then when I say “four” I watch their face change to pity.

I watch their face drop as they have no idea what else to say to us.

Somedays I just don’t want to do it. I don’t want to feel alone in a room full of people. Have you ever felt that way?

There can be people all around me but yet I feel alone because the majority of everyone surrounding me simply doesn’t understand our life.

They don’t know what it’s like to have a child with a complex medical condition who has severe developmental disabilities.

Our day to day life is anything but typical. So, sometimes it’s easier for me to just NOT participate.

I don’t want the whispers behind our back or the blatant stares. I don’t have to face any of that if we just stay home.

But as I sat with our son enjoying the laughter at the pool while he happily watched his iPad in the breeze something occurred to me.

There was nowhere else he would have rather been. He kept looking up at me with his sparkling eyes as if to tell me he was enjoying himself and was thrilled to be there.

His little legs were going crazy. He was happy. He had two of his favorite things; his mom and his iPad. And as much as I would have loved to be the mom in the pool with a glass of wine, I wasn’t.

As much as I would give to have him jumping off of the side of the pool, he wasn’t. I would love to take this all away from him and make his life easier, but I can’t.

I realized then that longing for the life I dreamed of is futile. My life is happening right now. Our lives are now.

I was sitting, alone, on the sidelines with our son. We were sitting together. We weren’t alone.

And at that moment, there was no where else I would have rather been.