Good Deed Sunday

Never having a motive to go famous or “viral”.

I know I sure have!

In fact, one touched my heart enough to gather up my kiddos and do the same in my own town.

It was a video of a young boy, under the age of five, who used his own money to buy flowers to hand out as Senior Living homes.

Seeing their faces and the joy it brought both parties, was enough to kick my butt in to gear and do the same.

Actually, the same day I saw this video was the same day I gathered up my three kiddos, ages 10, 4 and 1, and took them to buy some flowers and seeds.

We actually bought tiny pots and filled them with soil and planted lavender and parsley in them.

We wanted to give the elderly at the homes something to take care of and watch as the plants grew and sprouted into something they could use.

We also bought colored daisies to pass out.

When I reached out to a local moms group on Facebook, I had asked if there were any rules as to visiting without having a family member at the facility.

I also asked best times to visit, and anything we needed to know beforehand.

When I arrived with my little crew, the boys were nervous yet excited to hand out the goodies and visit with everyone.

The director immediately greeted us and took us to the dining area where everyone was finishing up their lunch.

With a wonderful introduction, we were all introduced and began handing out the seedlings and flowers.

We were asked why we were doing such a thing, and everyone was surprised and pleased to hear that we just wanted to brighten their days!

I really loved seeing my boys go off independently and take into their own hands with passing out the gifts.

It showed me they were not frightened nor shy about meeting new people and hearing their stories they shared.

Even my little Theodore who is one year old was passing out flowers (all to the same lucky lady).

At the end of the visit, they could not thank us enough even though we felt like the lucky ones.

If you ever consider doing a good deed like this, please make sure to call ahead and get good visitation times and see if there is anything handy you need to know.

You just might be surprised how happy you feel knowing you brightened someone else’s day!

Hard Work

You will lose some things, skills, friends and sleep for example.

Gain others, strength, fight and a dark sense of humour.

Job wise, work may become nearly impossible.

My membership of a professional body,degree and training finally had to be shelved.

It occurs to me, though that caring for Pearl on a daily basis has given me skills that I never knew I possessed, that may in fact have applications in the wider world.

I can scope out a building in seconds for accessibility, toilet potential and trip hazards. My eye is now finely tuned to a hidden step or an unexpected camber on a slope. I could perhaps work for the secret services, looking for hidden dangers or elements of surprise.

I can balance an extraordinary amount of things on the back of a wheelchair, and a surprising amount of mobility aids in the boot of a car. Maybe I could set up a small removals firm?

I can smile sweetly while staring daggers at people who park in disabled spaces, stare at small people with disabilities, or Local Authority managers. Politics, maybe running the country is my thing?

I can count out medication, understand, timings, half lives and storage, whilst knowing the side effects to at least 4 different kinds of prescription drugs. I might actually have a career in Pharmacy.

I can deal with an epileptic fit in a public place while outwardly maintain my composure. Ambulance Paramedic anyone?

However, dressing Pearl is one of my greatest daily challenges. If she doesn’t feel cooperative(and she doesn’t often) it involves her going floppy or rigid in turn. That and the ability I have to make my knackered middle aged face look reasonable with make-up (but Jane you look so well….) leads me to believe I’d be best placed to work in an Undertakers preparing the Dear Departed. And think of the peace!

How many skills have you had to master to succeed in your caring role?

Between us I’ll bet we’ve got everything covered.

Three Books that Helped us Become Better Parents

Too often, as parents we focus too much of making sure our children have all of their needs met and neglect our needs.

All parents of special needs children need to take time for themselves to address their own issues regarding our chidren’s needs.

Believe us, knowing how to deal with your own feelings and emotions goes a long way in helping your child address their own struggles.

Here are three books that helped us be better parents:

 ‘A Different Kind of Perfect: Writings by Parents on Raising a Child with Special Needs’

by Cindy Dowling

The writings collected here are grouped into chapters reflecting the progressive stages of many parents’ emotional journeys, starting with grief, denial, and anger and moving towards acceptance, empowerment, laughter, and even joy. Each chapter opens with an introduction by Neil Nicoll, a child and family psychologist who specializes in development disorders.

‘Expecting Adam: A Story of Birth, Rebirth, and Everyday Magic’

by Martha Beck

John and Martha were an ambitious American couple. With six Harvard degrees between them, and living in the refined atmosphere of the Harvard campus, the last thing they expected was to become parents to a Down’s Syndrome baby. This is their story.

‘My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities’

edited by Yantra Bertelli and Sarah Talbot

An assortment of authentic, shared experiences from parents at the fringes is a partial antidote to the stories that misrepresent, ridicule and objectify disabled kids and their parents.

Novels Feat. Special Needs Characters

“We are, as a species, addicted to story. Even when the body goes to sleep the mind stays up all night telling itself stories.”

(Jonathan Gottschall, The Storytelling Animal: How Stories Make us Human)

You can’t escape stories, they live everywhere.

We find them in books, TV shows, music, advertisements, jokes, anecdotes, love letters, emails, memories and places we haven’t looked yet.

Each new story, fictional or otherwise, can fill an empty space in our worldview with colour and detail or alter what existed there before.

Stories matter because all of us want to feel understood as individuals and as part of a community.

This certainly applies to the special needs community.

There’s nothing like a good book and a cozy spot at home to unwind during rare moments of downtime.

Have a glance at these three novels featuring special needs characters that we think everyone should read:

1. ‘The Memory Keeper’s Daughter’

by Kim Edward

David’s relationship with his wife, becomes rocky while their son must deal with their uneasy relationship and his own longing to know the sister he lost.

2. ‘Up High in the Trees’

by Kiara Brinkman

This book will make you cry.

Young Sebby Lane tragically loses his pregnant mother when she is hit by a car.
Already emotionally and sensory sensitive,Sebby’s father, Stephen, decides to take Sebby to their summer home, but there Stephen falls deeper into his mourning.

3. ‘Of Mice and Men’

by John Steinbeck

This classic story of two men—Lenny and George—one who has a child-like mentality but brute strength, the other who takes on the role as a father-figure to the other.

Time for a Mental Health MOT

But this month is mental health awareness month so it’s the perfect time to put ourselves first and have a bit of a mental health MOT.

The first thing to consider is do you need to talk to someone?

If the answer is yes, then don’t keep putting it off.

Putting yourself and your needs first is vital for your children’s well being as well as for your own.

Visit the mental mutha website to find some great resources who can help you.

There’s even a panic button if you are really struggling.

The following tips are designed to help you to put yourself at the top of the list & maintain your mental health but please do visit the website above if you need real support right now.

1. Exercise

Regular exercise is great for boosting you.

It doesn’t have to be a full on cardio workout though, a short walk with the dog is better than nothing and will get you out of the house.

But if you do fancy something a bit more full on then your local gym is a great place to meet people who aren’t in the special needs bubble so you can work out and get some company too.

2. Mindfulness

Whether you prefer deep breathing or guided imagery to help relax your mind, meditation and mindfulness can have significant benefits on your mental and physical health.

There are a lot of different ways you can practice mindfulness but knowing how busy you probably are I’d suggest you start with an app like Calm

3. Cut Down the Alcohol

Reducing your alcohol intake may sound like a crazy idea when you are a special needs parent but trust me!

Having a few weeks of cutting down, or cutting it out completely, will help to clear your mind.

4. Friends & family

As a special needs parent it can sometimes feel like you are either isolated when they are not as helpful as you’d like, or are drained when your whole contact with them is focused on your disabled child.

But it is important to lean on friends and family and take time with them outside of the special needs bubble.

So if you can, try and make some time to spend with friends or family.

Ideally for me this means having times when we aren’t just talking about disability, and in fact I will actively try and steer the conversation away from that sometimes.

But it might be the opposite for you.

If you are not in a position where this is possible then lean on your online social circle and try and organise a meet up.

Being with people in real life can really help to lift your spirits and reduce your stress levels.

5.  Get back to the, “Old You”.

That might sound impossible right now but what was it you loved to do before you had kids?

Maybe you had a hobby, loved to ride a bike or visit museums, whatever it was try and get back into the habit of making time so you can do those things again.

It might take a bit (OK, a lot) more planning these days but it’ll be worth it.

Make the most of the time the kids are at school to go and take some valuable ‘me time’.