Our normal isn’t so normal. But we label it as such.

When you ask parents what their idea of a luxury might be, you might think that special needs parents would come up with ideas grand and bigger than life.

That we’d ask for all inclusive vacations, a brand new wardrobe, a $5,000 shopping spree, or cosmetic surgery to erase the added worry lines from our face and bodies…

But in reality, you’ll find special needs parents wish for nothing grand, overly spectacular or even expensive.

I asked a group of special needs parents to tell me what their simple pleasures would be and here are their responses:

 

“Finishing 1 cup of coffee without having to microwave it four times before I finally give up and throw it out.”

Pattie Ruwwe

“Just having the time and space to breathe, without fearing or knowing that I am needed.”

Matthew J. Cerrato

“Using my work PTO for an actual day off instead of a doctor’s appointment!!”

Carrie Berry Paul

“Expensive iced coffee, and by that I mean a large, maybe a flavor shot, from Dunks or a regional chain, Heavenly Donuts.”

Nora Lyons Sauter

“I want a day to lay on the couch under a blanket, watching Netflix.”

Jennifer Cunningham

“A quiet dinner date at home with my hubby. Simple… but impossible!” 

Caren Sue Evans

“Shower and a hot cup of tea for me – pure luxury.”

George Morgan

In the face of adversity special needs parents wish for the smallest of pleasures.

Perhaps that comes from a place of wishing for all of their economical resources to go towards helping their children, perhaps they’ve come to understand what matters most in life, so small rewards feel huge in the larger picture of their days.

Perhaps we’ve learned the art of needing less so our children can have more.

When a special needs parent is born, a kind humbleness moves in.

And you’ll soon find special needs parents find happiness in small, unique and unexpected ways.

What is your simple pleasure?

Costumes adding to the challenge with children who cannot handle hats, Halloween make-up or textured outfits can cause a child to want to scream, cry, itch, gag and in even extreme cases, vomit.

It’s a holiday celebration that can be complicated for the child with SPD. Yet children with SPD sometimes still very much ache to participate, they just need avenues to pursue in order to help them do so.

Here are four tips on how to help your child with SPD through the Halloween season:

Pick Sensory Friendly Costumes:

This could be as simple as a Superhero or Disney themed set of pajamas. Don’t be afraid to think outside the box for physical comfort and practicality.

Sometimes a simple sweatsuit set with a cape can work. In extreme SPD cases, trick-or-treating is also fine without a costume.

Maybe even a simple temporary tattoo on their hand is all your child can handle or needs. There is no rule that says costumes are mandatory to participate in Halloween activities.

Avoid Unnecessary Scares:

Try to remove the fear from the fun. Try to find fall activities that don’t have the potential to scare, but offer a light autumn feel instead.

Work on making good memory associations with the season, perhaps a warm cup of apple cider stirred with a cinnamon stick on a crisp fall day, craving a happy pumpkin or stenciling a sweet design, or sit on a bench, feel the breeze and watch leaves fall from the trees. Find soothing parts to the season that your child enjoys.

Decorate Lightly:

While the scents of pumpkin spice candles and cinnamon and nutmeg speak tall tell signs of fall and Halloween on the horizon, smells can be particularly bothersome for the child with SPD.

Sometimes trading out the scented candles for pre-lit colored and patterned is easier to have in your home with a child with sensitivities. Excessive bold colors can also be overwhelming. Instead of coating your house in head to toe shades of orange, seek easier colors like blonde or white pumpkins. Avoid gruesome décor, and focus on an autumn inspired theme.

And if all else fails do not even flinch or give it a second thought if you forgo Halloween or fall decorations in your home altogether.

Avoid Halloween Parties:

As much as children love great parties, sometimes saying no this time of year is best.

Halloween parties often come without controlled environments, children in a variety of different costumes and hyped up on loads of sugar is enough to send any person without a sensory challenge over the edge sometimes. Plan your own family participation party at home.

Designate a special night where immediate or close family gathers together for your own Halloween party in the comforts of your own pajamas. Maybe that’s watching a fun Halloween Mickey Mouse show after you make popcorn balls and candied apples. Make the party tailed to you and your child’s needs.

Guaranteed it will also make for some fantastic memories to last through the years.

While I do get up planning to be a mommy superhero each day to my child with special needs, and do lots of amazing things each day – like assist my child with learning new skills, being his access to all physical activities he unable to independently master, and juggle physician, therapy and rehabilitation appointments – I am still conscious and aware of nurturing my own self-happiness with days that are filled with a mixture of both challenges and blessings.

I know that I’m a stronger parent if I am practising great love and devotion from a strong place of health and happiness.

I make a conscience effort to practice these three things everyday in order to be the best special needs parent that I can be:

Disengagement

“The richest, happiest and most productive lives are characterized by the ability to fully engage in the challenge at hand, but also to disengage periodically and seek renewal” – Loehr and Schwarz

This is one of the biggest things that I remind myself to practice and do daily. 

Being a special needs parent is exhausting on so many levels. The demands that are placed on us are difficult. We can’t just be “mom” or “dad.” 

We are our children’s secretaries, their voice, their therapists, their doctors, and advocates. 

We are care providers, nurses, and teachers. 

We wear multiple hats in a single hour let alone what we attempt in an entire day.

Our days are filled with endless challenges and fighting battles on behalf of our children. 

We put on our imaginary war gear and head into IEP meetings while smiling and carrying a box of donuts to demonstrate we have a sweet side; we can send thirty emails in one day to a caseworkers and durable medical equipment providers asking for benefits and adaptive equipment; draft appeals paperwork in our sleep, still juggle nine loads of laundry, take the ailing dog to the vet, get dinner on the table, read four bedtime stories, and fix two wheelchairs that have a broken lateral and headrest. 

This can wear any special needs parent out super fast. 

Even faster on the days when the odds feel stacked against you and insurance comes back with five denials in one day, or you’re told your child’s therapy hours are being cut due to financial cut backs.  

While we can handle the best of challenges, it is essential to seek renewal so that we can refuel ourselves so we can go the distance long-term.

For me this often means I take long periods away from social media or emails, or outside distractions so I can refocus. 

I also take time to absorb the important things, like getting down on the floor with my child with special needs and taking notice of the sweet smell of his hair, feeling the depth of his laughter. 

Doing something spontaneous like going to the zoo on a Tuesday – just because we can, or devoting a day to no phone calls, therapy or appointments and having all of us spend the entire day in pajamas – just because we can.

Strive To Help Others

It is easy to become self-absorbed with the complications that special needs parenting can bring.

It’s a beautiful and easy distraction from things that are often beyond your control if you can be of assistance to someone else during their own difficult day and set of circumstances. This can be really simple.

You can pick up the phone to reach out to a fellow special needs mom to remind him or her that you are thinking of them, sending a note to help give advice on adaptive equipment or therapies, it could be doing a good deed anonymously, this really could look like anything as long as your intentions are to help someone else in some way.

There is no greater feeling than the act of kindness – and the reminder that we all can make a small positive difference.

This takes away from the drowning feelings and self-pity moments that special needs parents can fall prey to.  You can’t be sad when you’re making someone else smile.

Develop Strategies To Put A “Win” In Each Day

The fact of the matter is we’re going to lose more than we win when you have a child with special needs. 

This can make you feel like you are sinking quickly. 

Finances tumble down the drain, insurance denials knock you off your feet, losing government services burns worse than any wound from a hot oven, having therapists come in and out of your child’s life is a colossal drag, and doctor’s giving you nothing but continual doom and gloom predictions about your child’s future feels like the icing on a yucky cake.

This is going to look differently for everyone. 

But you can find ways to put “wins” in your day. 

Try working out for 30 minutes each day to a in-home exercise video, make a point to color each day with your child and help build their creativity, make an effort to take a shower by 8am every morning. 

Doesn’t matter what it is – find a tiny goal that is easy to make a personal win. 

You’re going to need that “win” when you reflect on a really hard and trying day. This “win” will become essential in balancing out the challenges.

Find something that you can do everyday that is going to help nurture yourself and make you the best special needs parent that you can be. You can do it!  I believe in you! 

I’m equally skilled in vocalizing my displeasure, disagreement and anger over the unfairness, inequality and lack of inclusion that surrounds the special needs community.

And I’m honest and candid about the joys, the beauty and the humbling experiences that come along with raising a child with a disability.

But the five words I want to say over and over again are; I Wish You Already Knew!

I Wish You Already Knew: The pain I feel knowing my son’s birth injury could have been avoided and that there isn’t a second of the day I don’t think about it.

I Wish You Already Knew: The fear I continually have wondering how I can financially provide all the out of pocket medical, therapy and equipment costs that insurance refuses to assist with.

I Wish You Already Knew: That my real personality is in no way aggressive or confrontational or combative, but that I’ve had to throw that all out the window in order to be heard and advocate for my son.

I Wish You Already Knew: How hard it is to push a wheelchair, a grocery cart, hold a typical toddler’s hand and try to shop quickly through the store.

I Wish You Already Knew: That I’m scared about the future and who will take care of my son when I’m either too old or no longer here to do so myself.

I Wish You Already Knew: The overwhelming feeling of falling short with the therapy and resources and finding all the best opportunities to give him the best quality of life.

I Wish You Already Knew: How painful it is when you verbally say things like, “if we prayed harder he’d be cured,” “that it must be your fault that he’s disabled,” or “you should have aborted him before he was born,” and how selfish I am because I allow my child to continue to live.

I Wish You Already Knew: That I’m so tired because I haven’t slept in years for fear that my son will have a medical crisis in the night and depend upon me to be there to rescue him.

I Wish You Already Knew: All the things that goes along with parenting a child with special needs so you’d understand what I am feeling, experiencing and going through. I wish you knew so you could offer me a hand or embrace me in an understanding hug instead of intensifying my pain and challenges.

I Wish You Already Knew: All the things I shouldn’t have to say.

I can dive into a grocery store focused intently on my list of items and comfortably not care if you are staring at me trying to balance a grocery cart, push a wheelchair and hold a small toddler’s hand so he doesn’t decide to put four pounds of bananas in the cart.

It doesn’t matter if you make a snide comment while I’m waiting unloading my groceries at the check-out and insinuate that my child a merely a financial burden on society and a hardship for his family.

Or if you’d rather be a bystander watching me struggle to load a typical child into a car seat, lock in a wheelchair and unload groceries all within minutes of each other, than asking if you can lend a helping hand, I’m starting not to notice you anymore because I’ve realized that you are not a productive part of my day and have the potential to bring my day down in unnecessary sadness and additional grief.

The consequence to not noticing you anymore is that I may miss that unexpected random act of kindness or not be able to identify or pick out a kind person in the crowd.

I no longer look and seek out those ready and willing to be our unlikely hero, a compassionate hand, or loving heart to our day.

It has become simply easier to march forward, not noticing.

While humans crave interactions with one another yet we force upon each other meaningless conversations and actions – especially when something makes us uncomfortable like witnessing a child with a severe disability in public.

It’s so much easier for strangers to look away, or not know how to properly respond, or to have no filter on what they say if they do pay any attention to a family with a disabled child.

Some may think that is sad or being a defeatist, some will deem it a natural defense mechanism for special needs parenting, and many others will absolutely understand.

That’s the unique thing about the special needs journey as parents even thought we’re all traveling this disability road we are all at different places and stages on that road.

No journey less challenging, no feelings less important or invalid, no journey trumping the experiences of another family.

Most of our mementos come from a great place of joy, but they can also originate from a place of tragedy or sadness.

That doesn’t make them any less special or any less treasured. In fact, in some cases this can make our mementos even more significant.

I have this stuffed animal pile that my child with special needs has long outgrown any interest in. 

They remain tucked securely and safely away in a blue fabric bin with frayed edges in the corner of his closet. It still has a distinct new baby smell mixed with the sterilization of hospital rooms. 

Perhaps once an eerie smell has over years become familiar with a form of acceptance and acknowledgment that it’s a representation of a piece of our story.  

Occasionally, I’m forced to move the bin to vacuum or when I need to get a step stool to reach the top of my son’s closet for his anti-suffocation pillowcases and benik splints. 

I’ve been known to take out each stuffed animal and examine each one carefully as if I’m assessing his or her health status periodically.

I did have a day or two when I questioned their value.

I contemplated their space in the closet in relation to, “letting go.”

The king of the stuffed animal pile is a Make-A-Bear that was given to my son on Christmas morning in 2008, he had survived the night after we had consented to a blood plasma transfusion in a desperate attempt to save his life.

Barely coherent and heavily medicated myself, I remained separated from my first-born son on the very first Christmas of our lives as a new family. I sent my husband to his bedside so he wasn’t alone on Christmas while I clung to the comfort of a priest at my bedside offering me a rosary and a prayer Christmas morning as we asked God to spare my son’s life.

My husband called and reported that our son had been gifted by a hospital Santa with a Build-A Bear in a Merry Christmas shirt.

It was his first Christmas gift.

Soon after, all the rest of his stuffed animal friends joined him; a small teddy bear angel, a frog, a musical elephant, giraffe, a dressed up teddy bear, panda and a miniature get well balloon – which to this day nearly eight years later is still inflated and resides in that blue bin keeping all the stuffed animals company.

On day fifteen they told us there was no hope and we removed our child from life support, forty-five minutes later he took his first bottle, and came home two days later with hospice care which expected our son to pass away at home shortly thereafter. 

However, he grew stronger by the day, although it was obvious his recovery would come with significant challenges and a profound and very serious disability early on.

That blue tattered bin is a reminder of where we started and how far we’ve come.

That stuffed crew kept him comfort when I couldn’t get to him, stayed by his side night and day, through all the times doctor’s jammed their thick fingers down his tiny throat to demonstrate he had no gag reflex, they were there the moment he was baptized in the hospital and served as witnesses to the event.

They were there through it all.

Those furry stuffed animals.

They are precious mementos and it seems hardly fair to send them off to the goodwill after the incredible service they provided to my son in his time of need – tiny stuffed heroes.

Years from now I imagine his little brother finding them in a trunk, half rotten and covered in dust, wondering why on earth I stashed them away for decades. 

I hope he looks back on pictures and remembers the story we’ll tell him about the significance of those stuffed animals.

The mementos from the hard times can tug and find a place in your heart so deep that they eventually bring us just as much joy and comfort as the mementos from the happy times. 

Election years are nightmares. Simply nightmares.

My phone blows up with political calls that I cannot stop, demanding that I give each side my vote, you peruse through your social media contacts and friend lists reading their daily statements and proclamations on who they think will be the country’s savior all the while trying not to let it change your perception of them.

You stare at televised convention speeches with your jaw open in both a combination of disbelief, shock and dismay that this is as good as it gets.

And then, just when you think it can’t get any worse politicians throw in the disability card.

These days being unkind, unsupported or not going above and beyond the American with Disabilities Act, puts you in a light similar to that of kicking a puppy or abusing a child.

It automatically invokes an angered response of the disabled community is being taken advantage of, disparaged, humiliated or un-cared for.

Politicians have figured out this very important fact, and are now using it as a tool to gain votes, followers and let’s not forget – most importantly to attack their opponent with during their political campaign.

Hillary Clinton is accused of parking illegally in a disabled parking spot and then laughing to reporters when asked “why?”

And it’s reported that Clinton said “When are they going to get those f—ing ree-tards out of here?!” in reference to children with disabilities moving too slow to gather eggs at an Easter Egg hunt on the lawn of Arkansas governor’s mansion in 1984.

Yet, we are then painted with a contradictory picture at the Democratic Convention which was televised for all of America to see in which she parades a young woman, Anastasia Somoza, now a disability advocate, onto stage to make the claims that Clinton began advocating for children, including her, with disabilities before Public Law 94-132 was passed allowing children with disabilities to have the right of inclusion in public schools.

Yet, reports indicate to the contrary that in 1973 New Bedford was already including children with disabilities in a public school setting and giving children school bus rides to school, way before her claimed intervention to improve the lives for children living with disabilities.

Clinton’s campaign further drew from criticism aimed at her opponent in which is reported that Donald Trump mocked a disabled reporter.

She wasted no time in putting together a condemning commercial aired at all times of the day of parents of a little girl living with spina bifida, proclaiming how appalled they were at Trump mocking a reporter with a disability.

Trump states that he was merely mimicking what a flustered reporter would look like when responding, and had no knowledge that the person he was referencing in any way had a disability.

Trump also has been subject to multiple lawsuits as a result of being out of compliance with ADA law. Yet the same is true for over half of American businesses and establishments that have not yet come up to ADA standards.

Note to politicians: we’re all still changing our disabled children on filthy bathroom floors.

And while that certainly isn’t yet included under ADA law, there is a lot missing from the disability conversation when it comes to politics.

Politicians know that Americans like and quite frankly crave “feel good” stories. We want to be moved. We want to feel that someone out there can rise to the occasion of being our dedicated and devoted hero. That we’ll all be saved from our current circumstances because someone will come in and sweep up all the dirt and take it out with the trash and we’ll all live happily ever after.

If you think you can make a vote for either party based on who you “think” treats those with disabilities better, then we’re all feeding into the hands of either political campaign and voting with our emotions. Which is one of the worst things we can do.

I’m sitting here in a slue of Medicaid denials for my son, that keep rolling faster than punches a professional boxing match.

We’re struggling financially to keep our heads above water, I’m currently pursuing food stamps and on government insurance.

Where is the conversation that discusses what is happening to families with disabilities?  How we’re thrown into immediate poverty after a child with a disability joins the American family unit?

Where is the discussion of the countless programs that being cut to fund medical, therapy and equipment costs for children with disabilities?

What about adults with disabilities who are in dire conditions suffering in group homes or lacking provider benefits and safe environments and protections from abusive caregivers?

Someone parks in my son’s parking space illegally everyday. Someone mocks my child with a disability everyday. So what?

Either I grow thicker skin or I’m going to be a walking heap of tears everywhere I go.

Long-term, where can either of these politicians take us when it comes to lifting us up from the very things our government is already doing to us?

Politicians and the American government is exactly why we are struggling as bad as we are in America when it comes to raising children with disabilities.

And we’re supposed to just accept that if either political candidate tells us they’ll be our saving grace when we all know that people will say whatever they need to in the moment whether they have intentions of ever acting on it or not just to receive your hard earned vote.

What our government is currently doing for us isn’t working. It’s a broken system.

It doesn’t matter if you are mad at Hillary because she parked illegally in a disabled parking spot, or if you are livid with Donald because you believe he did intend to mock a reporter with a disability. Where is the action plan for changing our family’s lives?  And I mean really changing it for the better.

Inclusion – we already have it; ADA compliance – to a big degree we already have it.

What we don’t have is financial security and help for our children to give them the qualify of life that they need and deserve.

What we really need is our politicians to quit using the disabled community to force us to vote with our emotions and completely ignore real issues at hand in the 2016 presidential election.

Sources:

http://www.usapoliticstoday.com/lied-hillarys-tearjerker-handicapped-girl-wheelchair-dnc-speech-lie/

http://www.wnd.com/2016/05/hillary-horror-get-those-f-ing-retards-out-of-here/

Hillary Clinton: Parking In Handicap Spaces And Laughing

http://abcnews.go.com/Politics/donald-trump-making-fun-reporters-disability/story?id=35463888

http://www.thedailybeast.com/articles/2015/12/02/donald-trump-s-war-on-people-with-disabilities.html

It’s a time of disconnection, it’s a time when you don’t feel like doing therapy, or attending a friend’s barbeque, or engaging in your typical special need support groups. 

Yearning for a hint of fun – a hint of the familiar normal that once existed. You’d rather sit in the sun, watch the flowers bloom and the grass grow. 

You want to go on long walks, find a way to hike on accessible trails with your child, and to feel alive. 

With summer comes complicated emotions that we try to suppress. 

You’ll see the neighborhood child across the street learning to ride a bike without training wheels and their parents cheering them on. 

You wish that was your child too, knowing that they’ll never be able to ride a bike or be able to even attempt to pedal a bike. 

You will see a child throw a ball or play tennis in the street. 

Typical children are out playing in parks, your field of vision is filled with children do all the things your child can’t and may likely never well be able to do. 

It stings and burns and hurts something fierce. You camouflage those feelings so no one sees the pain in your eyes or detects the pain. 

Many special needs parents do what comes naturally. They purposefully withdraw from others.

 It starts slow. Perhaps you become less respondent to emails and phone calls, then it expands to not verbally wanting to discuss how you are feeling or events in your life with others, and sometimes this even carries over to your spouse where you feel too exhausted to go over the day’s events, how your child did in therapy, or how you are feeling because after all the weight of the world is on your shoulder. 

The heat intensifies the flame and the burning in your heart. 

It becomes an irritant, even more so when you have a child that can’t regulate body temperature and has sensitivities to the sun that make you feel like you might as well be a Vampire family, only coming out at night. 

The summertime can be a blaring reminder of how cheated we feel. 

We question why us? Why me? Why my child? More than we do during other seasons. 

We long for a normal vacation without planning like the world is ending and you’re packing everything your child owns into a small vehicle just for an overnight stay at a hotel.

And all we can do is acknowledge that we are having these feelings – these perfectly acceptable and normal feelings. 

These summer emotions can get the best of us if we stew on them too long. 

When I feel any of these feelings creeping up on me the best relief comes in shifting my focus to something else. 

Distractions are good, finding time at the end of the evening to read an inspirational book, finding a fun activity that the whole family can participate in, sometimes not opening your front blinds so you don’t have to watch the neighbor child learning to ride a bike…

…whatever it takes to put those hot summer emotions on ice.