Special Needs Parenting: When You’re Stopped In Your Tracks

The conversation that follows feels like a punch to the stomach, winding you.

Emotions all over the place.

Replacing the receiver, hearing the words over in your head.

It was good news today, for once.

Our application for continuing healthcare support was provisionally agreed at a meeting this morning.

Our lovely community nurse who’s been with us since Sam was 14 weeks old called as soon as she heard.

Good news.

So, why can I not stop crying?!

It’s very simple.

It’s because I am sharply reminded that while I see him as nothing more than a wonderful, perfect child, the reality is that he is a very poor one.

Uncontrolled epilepsy is deemed to be when someone has more than a couple of seizures in a month; Sam has around 10 daily.

We’ve just gotten so used to coping, to managing the situation, that it’s normal to us and when reality bites it doesn’t just nip. It takes chunks out of us.

I’m so relieved that we’ll finally get the support we’ve desperately needed for so long, and heartbroken that we need it at all.

I’m winded by the tidal wave of adrenaline surging through my body currently, my legs are shaky, and I can’t think straight.

All I want to do is get in my car and drive as fast as I can home to scoop my child into my arms and tell him just how much I love him.

So he’ll never, ever be in any doubt that he is my world.

That I don’t love him in spite of his difficulties, but that they make me love him so much more than I ever imagined possible because I see his strength and love of life in the face of all his battles.

I see his courage.

I could do with a good dose of that right now.

Special Needs Parenting: Understanding Autism – Not Every Case Is The Same

“Does he have a special talent?”

If I had a pound for every time I had heard those statements and questions. Well.. I think I’d be pretty rich by now.

What people don’t understand is that autism is a HUGE spectrum disorder.

The range between mild, severe and all the in-between is massive.

The ‘clever’ people they talk about, with ‘special talents’ have what you’d call ‘high functioning’ autism.

And people with this are usually only really good at something in particular because they struggle in other areas.

So, instead of struggling to do the thing they aren’t so good at, their brains automatically focus on the thing they are good at, therefore they just get better and better at said subject.

I was recently out shopping with Aj when a lady asked and started quizzing me about my son’s autism.

She told me how her sister’s son had autism, and in her words, “He’s what you call a high achiever, though.”

Wow, well, that was a bit of a kick in the gut.

She probably didn’t mean to come across as being so rude (well at least I hope not!) but what she said really hurt my feelings.

I tried to explain that we’ve been told our son will never be the ‘high achiever’, but then she just shrugged it off.

That’s why I wish people knew more about autism.

Having the knowledge would prevent (well hopefully) hurtful, thoughtless comments like those.

When you see documentaries on the TV or stories on social media about autism, it’s more or less always about individuals who are high functioning and have, ‘special talents’.

I think this gives the wrong perception of autism as a whole, and people just seem to forget how much it can actually affect someone’s life when your on the severe end of the scale.

Obviously, I understand having any form of autism has an effect on your life, severe or not..

I just wish it was always the ‘success’ stories, for want of a better word, that get publicised!

After all.. Awareness is acceptance!

Special Needs Parenting: Permission To Take a Vacation From Therapy

Physical, occupational and speech therapy cheers you and your child on each week. You believe that there is an end in sight.

Therapy – sure we’ll get through therapy and ‘fix’ all we need to and we’ll be done forever!

After the first year is when you might start to grow a bit weary.

Adaptive equipment discussions start to happen… standers, wheelchairs, gait trainers.

Your mind swirls with uncertainty about what all this means for your child’s future.

Yet you trudge on piling on more and more therapies with the hopes that all of it will make a significant difference.

You might even have a therapist or two who detects the start of your exhaustion trudging to therapy after therapy with your child and pulls you quietly aside to confide in you that there will come a point where therapy will no longer be needed… not because your child won’t benefit from it, but because they’ll reach a time when they feel your child doesn’t have the potential to make any further gains.

This inevitably causes a sharp pain to hit right in the center of your heart, and make you question if your ears really heard what you were just told.

In defiance against the odds set before you that more can’t be done you seek out even more therapies.

This time out of pocket expensive therapies that are deemed “alternative” and something that your insurance company would never dream of considering.

Yet your willingness to push through forces you to create online fundraising accounts, beg any foundation and charity that you can find by doing extensive online searches and consulting with other special needs families in the community.

Before you know it you’ve lined up a therapy for each day of the week and on some days you’re doubling up on therapies.

You throw in a handful of, “intensive therapies”, that are longer and more time consuming.

You’re now travelling sometimes out of state even for camps and therapy sessions.

Until one morning you wake up and hit that special needs parenting brick wall.

The wall that wall that says I can do no more.

Maybe financially you’ve come to a dead end, that happens more times than not.

Maybe you feel like you are short-changing your typical child by devoting every waking moment to improving the life of the child that depends upon you for all daily living needs.

Or maybe you just realize that your battery is low and you are just plain tired.

And so you have this monumental moment of saying you’re done with therapy.

Now, this isn’t to be confused with permanently giving up on your child’s therapy.

This is just a point where you say – I want to have a normal summer with normal activities with zero therapy.

A time for you to bond as a family, go to the park, take walks – a big stretch… take a well-deserved family vacation – the freedom to just exist without all these extra appointments.

You might twinge in the beginning with that little voice in the back of your head that says, my child won’t get better unless we continue on at this pace – the guilt factor that gives us that fierce parental drive to keep going the distance at all costs – even if that is our mental sanity and ignoring all signs of physical exhaustion.

But then the other voice says it’s going to be okay, you’ve gained so much knowledge through the years that you can do a lot of therapy yourself for the time being while you take a little break.

And it’s important to recognize that if you are feeling you need a break – your child is likely too.

We’re balancing a fine line of therapies with offering our children a real childhood at the same time.

Give yourself permission to take a break.

Therapy will still be waiting for you to return.

And you and your child will be so much more rested and refreshed to go at it again.

Be gentle with yourself and the decisions that you feel most comfortable with making.