Oversensitive, with good reason

We are often labeled as “oversensitive.” We are blamed for being offended too easily.

We’re just a little “touchy.” We’re even referred to as “crazy parents” at times.

We are parents of children with special needs.

We wear our hearts on the outside of our bodies. As for myself, my sensitivity level is most definitely heightened. I can certainly agree that when it comes to my children, I don’t back down and I proudly claim the title of Hypersensitive Mom. With good reason.

While out shopping recently, I overheard someone teasingly call another human being the “R Word.”

Without warning, the same reaction I feel every time I hear THAT word was elicited. I could literally feel my face turn bright red, a lump formed in my throat, while the blood in my veins began to boil.

Sadly, this happens more often than you would think.

In the world of social media, I’ve lost respect for many people over their use of THAT word. I’ve even unfriended a handful for their sharing of internet memes that included the words “short bus.”

These terms personally hit me like an unexpected sucker punch, every single time I encounter them. They hurt me to my core.

Shamefully, in my younger days, I know I would’ve playfully used such terms…cluelessly unaware of the implications. Back then, I was without a grasp of the impact of such hurtful carelessness.

Those days are so very far behind me now. I am thankful that I have evolved, and I know better.

If you ever wonder why we take such offense and are ultra-sensitive to this, the reasons are quite simple.

We’ve had to endure listening to medical professionals tell us that our children are “incompatible with life.”

In learning of our children’s diagnoses, we have had the words “severe”, “profound”, “limited independence” and “intellectual and physical disability” spoken to us.

We’ve stayed awake all night, with tear-soaked cheeks, reading literature about our own children’s disorders that includes that outdated and abrasive “R Word.”

Our lives are filled with medical equipment, therapies, communication devices, special healthcare needs and medications.

We’ve collectively experienced worries, fears and a roller coaster of emotions that most can’t quite fathom.

Unless you live this life too, you can’t truly comprehend the constant fight we must put up for our precious children.

We go to battle for them on every front: school supports, healthcare, insurance, and inclusion. The list is unending.

The wars that we wage are just part of the territory; part of the job of being a parent of a child with special needs.

The idea of anyone mocking what these amazing individuals go through, finding anything humorous in disability, not only fuels our fire…It breaks our hearts.

As an advocate for my own children and for children everywhere, I implore others to simply BE KIND.

Before making seemingly harmless jokes, sharing those seemingly innocuous posts on social media, or using harsh, ancient vocabulary that was once used to describe those with disabilities, THINK.

Words can wound. Deeply.

Even though you may think to yourself, “I didn’t mean it THAT way…” Please, choose more wisely.

As a special needs parent, I will forever be oversensitive, with a changed heart.

Always. And very rightly so.

Container Syndrome – It’s a real thing

As a pediatric physical therapist I saw this phenomenon evolving, but only recently has it been given a formal label,” Container Syndrome”.

Parents often place their children in swings, infant seats, rockers, bouncy seat, strollers, and jumpers (an anathema for any PT).

Sometimes, it’s to protect the child from older children or pets.

At times, it’s to give parents an opportunity to be hands free from the baby and to tend to other children, take care of household duties or even self-care.

Retail companies have sold these products that play music, flash lights, vibrate, glide and rock the baby, under the pretence that babies are entertained, happy and stimulated.

However, unbeknownst to many parents, there is also such a thing as overuse of these devices and it is actually detrimental to a child’s development to be placed in one device after another, hence the term ‘Container Syndrome”.

Babies that are placed in these ‘containers’, in lieu of being put on the floor to play or held, may develop flat head syndrome, torticollis, plagiocephaly, developmental delay, have poor head control and even worse.

There is a baby rocker product that was recalled in the US because of several infant deaths.

Although the rate of SIDS has decreased by 50% as a result of the ‘Back to Sleep’ campaign, the incidence of Container Syndrome has been identified in 1 out of 7 babies (Move Forward PT, APTA). All of the above mentioned products have been marketed by retail companies, some with adequate safety testing.

Yet, any pediatric specialist will tell you that floor play and tummy time allows opportunities for active learning to occur, it allows your children to explore their environment, experiment with a variety of movement patterns, develop head control, and gain muscle strength.

Prevent container syndrome by

Limit the amount of time your child is in their carseat, swing, bouncer, rocker

Increase the amount of time that they are upright (being held, in a stander, or the upsee)

If you do have to protect your child from older children or pets, let them play in a play pen or Playpak (with adult supervision) and keep changing their position.

Put your child on the floor and place toys around them that will encourage them to look, reach, kick or roll in different directions. This is will benefit them in the long run.

 

Not just morning sickness

When I was pregnant with Rory and Alfie, my pregnancy wasn’t straight forwards.

I had hyperemesis gravidarum (HG), aka severe morning sickness. With high profile people such as the Duchess of Cambridge (Kate Middleton) experiencing such symptoms, there is much more awareness of this condition, but what isn’t made aware is the further problems that can be caused.

Yes, severe morning sickness causes dehydration, weight loss and low-blood pressure, but the treatment can be dangerous too.

When I found out I was pregnant, so much became clear. What I thought was a stomach bug, was obviously more. What I thought was dizziness was low blood-pressure.

Following countless trips to see my GP and midwife, being admitted to hospital to have fluids through a drip, and following advice such as eating a small amount before getting up of a morning, a doctor finally diagnosed me with HG.

He said it is common in a multiple pregnancy and if my symptoms did not get any better, that he would prescribe me with anti-sickness medication.

Days later, having barely stopped vomiting, he prescribed me with metoclopramide hydrochloride.

Little did I know; this would lead to one of the most terrifying experiences of my life. I suffered with a rare reaction called an acute dystonic reaction. Just hours after returning home, Zak had to ring 999 when my entire body seized up. I was unable to move, talk or process thoughts.

The reaction is so rare that the paramedics thought I had taken recreational drugs.

They did not believe Zak when he explained I had taken anti-sickness medication.

How could something so common as morning sickness cause such a reaction? Their failure to accept the cause of the reaction I was having meant my treatment was delayed.

It was not until nearly 9 hours later that I was seen by a doctor who realised that I was seriously unwell and administered the treatment I needed. Up until that point, I had been seen as little more than someone wasting valuable NHS time and resources.

But this is the reality of HG. The complications and problems that are not broadcast by the media.

HG is not just morning sickness.

It is a fully debilitating condition that comes with a whole host of complications and risks for both the mother and the unborn child (or children).

It is not something that should be trivialised or ignored, nor a waste of resources.

It is not the fault of the mother and no woman should be penalised for a condition out of her control.