1. Go Slow

If possible, begin with your child upright on your shoulder.

Lay your child’s head on your shoulder and make sure she is calm.

When she is comfortable and calm, sit on the couch and lean back.

Slowly slide your buttocks forward towards the edge of the couch so that your body is reclined to about 45 degrees.

If your child is able to tolerate this modified tummy time position, try sliding her on to your chest and encourage her to lift her head up and look to look at you.

Look into her eyes and talk to her in a soft, soothing voice.

2. Timing is Everything!

If your child is tired or sleepy she will not be in the mood for tummy time – it’s that simple.

Most kids will let you know in their own way if they are ready for some midmorning exercise.

Look to see if your child is smiling and kicking her legs.

If she is, then engage her with some fun activities while she is lying on her back first.

One of my favorites is moving her legs in a bicycling type of motion, before flipping her over on her tummy.

3. Use Short Bursts Of Activity

You don’t have to make your little one suffer through her daily tummy time diet all in one shot. 

Give her 5 minutes on her tummy and she how she does.

Oh and try taking her out of tummy time before she starts to cry. 

This will help to keep her tummy time activity fun.

4. Use Props – Lots of Props

Tip # 4 is really more like 3 or 4 tips stuffed into one.

In addition to using a boppy to help your baby balance herself in the seated position, flip the boppy around and put your baby to lie inside the donut hole with her trunk on top of the boppy.

Don’t own a boppy or know what a boppy is? No problem. 

Use a pillow and prop her up on it.

Just make sure to position her elbows directly under her shoulders.

In addition, position a mirror in front of her so that she can see herself while she is doing an awesome job of midday tummy time.

You can also use a rolled up towel for support under her chest.

5. Use Your Own Body Parts

Tummy time across your lap can be a great way to mix things up.

Sit on a chair and put your child face down across your lap.

This position has the added benefit of being a great position for burping and relieving gas.

Raise the knee under her chest to make it a bit easier for her.

You can also sit on the floor and put a blanket over your legs.

Lay her across your shins and roll your feet side to side for some added fun.

6.  Tummy Time does NOT Hurt Your Baby!

If your child can’t talk, you depend on her cries and wails to tell you if and when something is wrong.

But trust me, tummy time does not hurt your child, so instead of flipping her over on to her back at the first little, “Ehhh-ehhh”, try talking to her in a soft soothing voice, or rubbing her head as you sing her a song.

7.  Don’t Walk Away!

Quite often parents think that their little ones can’t handle tummy time, when in fact the truth is that their child can’t handle tummy time alone.

For some kids, being face down on the ground is a scary thing, especially if she’s not able to roll over on to her back by herself.

So stick around, lie on the ground face to face, and show her how much fun tummy time can be.

It affects his every last little thing you can think about.

Outings can be a tough one.

Meet ups with friends, birthday parties etc.

Birthday parties are my worst nightmare.

First off, they are full of, ‘neurologically typical’, children, the same age or younger than my son, doing waaaay more than he can.

They’re full of parents, happy parents playfully, ‘bragging’, to one and other about how, ‘good’, their babies have always been, how well they’ve always slept or how, ‘advanced’, they are.

Then something that always come into conversations between women – labour.

Urgh.. I sit back during these conversations, my son’s birth trauma still haunts me everyday, I don’t need to be talking about it to expectant mothers.

Then someone will come along, and cheerfully ask, “So, how’s he doing?”

I choke..

How do I answer that?

Do I go into detail about his latest regressions?

Tell them how excited I am that my almost 3 year old has just learnt how to point or bring his hands midline?

Tell them about his recent appointments?

How he’s getting on at Physio?

How his cerebral palsy is affecting his leg muscles more and more every day?

No.. I pause, and answer.. “Yeah he’s good”.

Eventually, when the party games and music starts it’s time for us to make our escape before it all triggers a meltdown.

There’s a huge misunderstanding around the whole, ‘meltdown’, situation.

Strangers in shops (Oh, how we hate shopping) will stop and say things such as, “Oh, he’s in a bad mood isn’t he?” “Typical boy, doesn’t like shopping!” Or, “Someone woke up on the wrong side of the bed!”

I know they aren’t intending on being malicious by their comments, so I just force a smile and carry on walking.

The thing is though – my son isn’t being naughty because he doesn’t like shopping, he isn’t just, ‘playing up’, because he wants to get to the toy section (that’s actually the worst place for him!), he’s just overwhelmed.

Overwhelmed by the noise, the lights, the sheer amount of people around him.

It’s actually scary just how lonely you can end up feeling when you are surrounded by so many people.

Eventually, his cries will attract the attention of just about anyone I push his wheelchair past.

They stare.

Stare at him, crying and scratching at his face then they’ll divert their stares to me.

The embarrassment of strangers staring and knowing that they are subconsciously judging your parenting consumes me.

I quickly grab what we need and leave.

Family/friends meet ups can be the worst.

“Let’s go out for some tea.”

Yay, a busy, noisy restaurant.

Perfect place, he’ll last around 2 minutes before he blows.

I’m lucky that my very close friends understand my son, some of them can even see when he’s starting to get overwhelmed now.

I want nothing more than to be able to go out, enjoy dinner with friends, have a peaceful shopping trip or just to go to a children’s party and enjoy it.

But the confusion between a, ‘naughty child’, and children with autism always makes me think twice about it.

There’s a lot more than meets the eye with my son, we’re still piecing his, ‘jigsaw’, together.

Next time you see a child, young person or even a adult not acting what you would consider to be, ‘normal’, please try not to judge or laugh.

They could have a lot more going on in their heads than you could ever imagine.

Awareness means acceptance.

If your child has an additional need for specialist equipment, then the arrival of equipment can be a sore reminder of what, “should have been”.

There isn’t really much choice in the special needs world of paediatric buggies, not half as much as regular prams anyway.

When my son was 11 months old, he was diagnosed with 4 limbed cerebral palsy.

When he was small, we could prop him up in his, ‘regular’, pushchair using blankets for support.

But as he got older, taller and heavier, his need for postural support became more apparent.

I absolutely loved my pram, I remember how we had saved for ages to get it.

It was a kick in the gut that we had to get rid of it, he didn’t even get 6 months use out of it.

We were assessed by occupational therapists and wheelchair services and we were eventually provided with the tendercare Snappi paediatric wheelchair.

I remember the feeling I had when it arrived.

It was so big, bulky and not as, ‘good looking’, as our previous pram.

I wanted to cry.

If I thought it was ugly, what would other people think?

Would people stare?

I knew it’s what he needed but it was so hard to come to terms with.

Next, came seating at home.

Aj didn’t have the core strength to sit in a regular highchair, he used to slouch and because of his poor positioning he choked a lot.

Again, whilst he was small, we used blankets to prop him up and help support him, but it just wasn’t convenient.

After being assessed by occupational therapy, Aj was provided with a Leckey Squiggles seat.

I remember this brought the same feelings with it that the wheelchair did.

It looked so medical.

What would people think when they came into my house?

Why can’t he have a nice, ‘normal’, highchair?

Without all the straps and stuff?

Next, came his walker..

This was a hard one to swallow.

He was at the age where I should’ve been buying reigns for him.

This just screamed, “I’m different”.

So many people used to stare at it, ask questions etc.

It actually makes me feel better about things when people ask, rather than just stare.

His latest and biggest piece of equipment has been his bed.

A Safe Space.

A week before it arrived, we took a trip to IKEA to pick out some drawers and storage units for his bedroom.

The only way out was to walk through the kids section.

This tore me apart.

Seeing the cute little beds with tents underneath, some even had slides!

(How cool?!)

When his bed arrived and had been assembled by the SafeSpace team, I went upstairs to look and wanted to cry.

This bed was HUGE, it looked like a fish tank, it didn’t look like a child’s bed, and that broke my heart.

I’m not at all ungrateful for the equipment we’ve received.

His buggy has opened many, many doors for us.

We can enjoy days out without worrying about him getting uncomfortable.

His feeding chair has meant he now suffers less from chest infections (as he doesn’t aspirate as much because of his good positioning!).

And, his bed has meant that he now has a safe place to sleep.

We don’t have to worry about him getting stuck in the bars of the cot or banging his head on the sides.

Since receiving Aj’s equipment and getting used to it all, we’ve come to terms with the fact he is, and always will be ‘different’, and whatever it takes, we will use any equipment to help him enjoy a, ‘normal’, life.

We have recently purchased a GoTo seat, this has meant Aj can enjoy swings, shopping trips and he can also sit on a ‘normal’ dinning chair!

He also now has a specialist trike which we LOVE!

We get stares, a lot.

Mostly from people who are just too shy (maybe?) to ask about his equipment.

Yes, our things are different, but they help him to be a little less different.

For many of us by asking for help we feel we are admitting weakness or inadequacy in not being able to handle everything on our own.

Yet, the strongest of people will inevitably need a helping hand here or there.

By asking someone to, “Please, take my hand.”

We are also setting a good example for our children – many of whom will be dependent upon needing some form of help throughout their entire lives.

So, how does one go about asking someone for a helping hand?

Here are some easy steps to help get you started:

Swallow Your Pride

This is the first and likely hardest hurdle to overcome.

Recognize that everyone at some point or another in his or her life needs help.

Asking for help is not a sign of weakness.

In fact, in many cases people are waiting on an initiation to help you so they don’t feel they are overstepping their boundaries and volunteering when they aren’t sure if you’d reject or welcome the help.

Make a sign and post it to your chest if need be – encourage others to help whenever possible.

We do enough in a single day, and we all could use a little relief and helping hand.

People are more likely to view you even stronger than you ever imagined when you are able to openly ask for help.

It will only increase their opinion of how brave and full of courage you are because you give them an opportunity to participate in your life in ways they may not be able to understand otherwise.

Be an Effective Listener

When we ask for help of any kind we have to be open to hearing another person’s perspective.

Sometimes that will come with welcomed advice eg. a verbal instruction on how to get around an obstacle.

Whether that be installing proper tie-downs for your disabled vehicle or asking someone to talk you through changing a flat tire so that you can do it on your own the next time.

It might even be listening to how someone can help; hearing that they are comfortable in carrying your groceries to your car, but not pushing your child’s wheelchair.

The Importance of Thank You 

Saying thank you is an important part of asking for help.

Everyone’s time and efforts are precious moments and spoken gratitude demonstrates that you recognize that they genuinely cared enough about you and your child to help.

Your helper will likely greatly appreciate it and will be more likely to help again in the future.

Remember to Repeat 

Asking for help can be hard, even harder to keep it up.

Remember if you can ask for help once you can ask for help again.

Each time you’ll find that it gets easier and easier.

And you might even get different help from different people.

Maybe you have a neighbour that can help you shovel snow if you tell them you need help getting your child’s wheelchair into a car and out of the driveway, or a long-time friend that is willing to pick up and drop off a gallon of milk so you can puree your child’s meal because you can’t get out in between therapies to do it.

You just never know what kind of help you’ll need from an entire team of people.

The important thing to remember is even superheroes have sidekicks.

Everyone needs help – even special needs parents who feel they can do it all.

This will be the 1,033rd consecutive day I’ve had little to no sleep.

(My son is almost 3 and has never slept longer than 4 hours at a time).

Helplessly watching my son thrashing around, rocking and crying whilst not knowing what’s the matter or what I can do to help soothe him.

Sleep is something I think a lot of people take for granted!

I know I never thought of it as something to look forward to, that was before I had my son anyway!

Staying awake until the early hours used to be the, ‘norm’, for me, and it was never this hard to do!

Seriously…Where did I get all my energy from? 

Sleep is so important to every one, but possibly even more so for families caring for little ones with special/extra needs.

It is an important part of development.

It’s when the brain rests, recovers from the day and and repairs itself, ready for the next day.

It’s vital for concentration throughout the day, and little people need to concentrate to learn.

And little people with special needs, need that concentration sooo, so, much!

So when your getting less than 4 hours sleep a night, things can get tough. In fact, everything gets tough.

A lack of sleep can make even the happiest of people grumpy, short tempered or just less tolerant than they usually would be.

It puts a LOT of tension on day-to-day family life.

Apparently 50% of all marriages end in divorce.

This percentage jumps to between 80% and 90% for couples who have a child with special needs.

Eighty percent!!

That’s a terrifying statistic!

Parenting is hard at the best of times, but the stress and strains of raising a child with extra or special needs really does put your relationships and even friendships to the test.

Friendships start to wither away when you’ve got no energy to do the things you used to.

Fun days out become more like chores.

You end up having to make excuses to not go because your too tired to function and eventually, friends stop asking.

You don’t want them to stop asking, you want them to understand.

But no one will ever really fully understand until they’re going through the same thing.

No matter how many times they’ve been up all night with their new teething baby.

At least they know that’ll pass eventually!

As with friendships… Relationships can be much the same.

Whilst longing for a, ‘night off’, to go out and/or just spend time with your partner, the minute you realise you have the time, all you want to do is sleep.

A lack of alone time with your partner can also lead to arguments, and those teeny, tiny arguments usually end up blowing up into world war 3 because your both so tired and grumpy!

I complain, a LOT about being tired, but I’m lucky in the fact I have some real friends who’ve stuck around and an understanding partner, who just looks past my grumpiness (or ignores, probably the latter, lol!)

Just getting through the day sometimes without wanting to scream or cry can be a reward in its self.

Keep going mummies… and daddies!

Your doing the best you can.

In both the local children’s Therapy Center and also in the school therapy room, she would almost always spend some of her hour session up on a swing.

Platform swings, log swings, bucket swings – they were all readily available to hook up with carabiners when the time came.

I don’t know if it’s a question of funding and resources, or if the therapists we are working with just don’t place the same value on the use of swings in therapy.

I’ve mentioned to her occupational therapist and physiotherapist how she used to be on swings in therapy several times a week and how much she loved it.

Their response is rather, “Oh, that’s nice,” (moving swiftly on).

Since starting therapy at the development centre here in March, she has not yet been on a swing.

She has a joint visit monthly with OT, PT and Speech.

I have asked to use the swing, but when we were supposed to, someone else apparently beat us to the room!

I am hoping that once she moves into school here this incoming year we will again get some more therapy time on swings.

Brielle is deafblind and has difficulty communicating, along with other health issues.

Swings are great for her because they awaken her vestibular sense and help with her sensory integration.

They allow her to practice sitting with minimal support, and work on her core balance and her muscle tone.

They also encourage bonding between Brielle and the therapist, and open many communication opportunities – reinforcing manual signs and spoken word for “swing, let’s go, stop, want more?” etc.

And they are just downright FUN!

Of course we do avail of all the local playgrounds for swinging fun!

We’ve found some very nice toddler bucket swings and also some larger net basket type swings that she enjoys too.

But a downside to outdoor swings are playgrounds are very weather-dependent!

But what if your biggest wish was just that your child with special needs didn’t have any of these special needs?

What if your biggest wish that they were a typical child?

Is that a healthy continual wish for us to have?

Or are we just setting ourselves up for perpetual disappointment because that wish most likely won’t ever come true?

Experts would say that these wishes for our children become fantasies and as such we have a hard time letting go and finding acceptance and peace with our children’s conditions and diagnosis.

When we feed these fantasies we are promoting frustration, anxiety and disappointment when we don’t see our children being able to ever overcome all of their challenges.

Wishing things were different isn’t entirely bad.

It’s okay to acknowledge mentally every now and again the, “What if’s..?”

But we can’t live in that space or it becomes consuming and can contribute to continual heartbreak because we wish for something that just will never be.

So how do we gently give ourselves permission to let go of these wishes but still balance that beautiful hope that we have for our children?

Here are some easy steps:

Live in the Moment 

Take intentional time to recognize the blessing and beauty of your child with special needs.

Be in utter awe of them.

Watch how he or she moves, smiles, laughs or communicates and remember how incredible that is.

No matter what that looks like, or how messy and complicated that may appear to the outside world.

See everything that your child is and does as a miracle – a living miracle.

It will take some of the sting out of wishing that things were different by focusing on the here and now.

Embrace your child in a hug and absorb their sweet scent, a nuzzle near their neck and hold them tenderly in your arms.

Just the gift of them being here on this earth with you beats any wish that you could ever have that things would be different, because they are exactly how you know them to be.

Find Appreciation 

Being thankful and grateful for the smallest of gifts and blessings can be an excellent distraction from wishing things were different.

It can start small, like being thankful that your child’s speech therapist shows up every week on time, to big things like your child hasn’t had a seizure in six days.

Recognition of Self-Compassion 

This is the big one.

Wishing things were different can stem largely from self-blame about a situation.

And special needs parents hold onto a lot of self-imposed guilt.

If only I had birthed at a different hospital things delivery would have been different.

If only I had taken more pre-natal vitamins then maybe things would be have been different.

If I had quit my job earlier and gone on bed rest things would have been different.

If I had only not done dishes and turned my back to avoid a life-altering accident things would be different.

It doesn’t matter what we believe our self-blame is – we all do it to some degree.

But we need to all realize that none of this is our fault.

There are a multitude of things that will happen our lifetime that is out of control.

We wish that we had the power to change it, to wish it not be so, but we simply can’t.

When you start to feel like these thoughts are creeping up on you, take a big deep breath and just breathe. The most important thing to acknowledge is things are okay.

My career defined me.

I had an interesting job and loved it when people asked me what I did for a living, because it sounded so damn fascinating (even though in reality it had the same amount of daily grind as any other job).

I was good at my job, enjoyed doing it, and never minded putting in extra hours. I spent many evenings after work having drinks with colleagues, building relationships and networks.

My career, above all else, was what gave me confidence and made me feel good about myself.

When my first daughter, Vegemite, arrived on the scene, there was a major readjustment.

Suddenly, work wasn’t the be-all and end-all in my life.  I didn’t work late – it was no longer an option.

I negotiated slightly reduced hours to balance work and life and although it was difficult – very difficult – I still managed to do my job well and was even promoted.

A career with a child was hard and not nearly as rewarding or enjoyable, but it was still possible.

Then Miss Z was born and everything changed again. When she was born we had no idea that there was anything wrong, so I planned to return to work part-time when Miss Z was four months old, leaving her under the care of a nanny until she turned one year old, after which, she’d attend the same day care as Vegemite, and I would consider increasing my work hours.

I thought it was a brilliant plan. And since Miss Z was a grumpy and difficult baby, I actually looked forward to the ‘break’ that returning to work would give me.

Shortly after I returned to work, the big seizure happened.  At five months old, Miss Z had a major status seizure lasting over 45 minutes.

During the seizure she stopped breathing, had to be intubated and remained on a ventilator in PICU for three days.

Initially doctors thought that it might have been a particularly nasty febrile convulsion, but a few weeks later she had another (thankfully shorter) seizure.

And then another.

And another.

By the time she was seven months old, she was on anti-seizure medication and had become a regular visitor at the hospital – both through the Emergency Department and as an out-patient, visiting various specialists.

I tried hard to keep my work on track. I put in hours in the evening after the girls had gone to bed in order to make up for time I’d missed due to appointments and emergencies.

I typed frantically on my Blackberry from hospital waiting rooms. I never said no to anything I was asked to do– I didn’t want to get a reputation as someone who was unreliable or lazy  – and made it work no matter what.

This sometimes led to some fairly ridiculous situations.

Miss Z had a long and unexpected hospital stay that clashed with a conference where I was scheduled as a speaker.

I spent the night before preparing my presentation in a dark hospital room.

My husband took the day off work to stay with Miss Z and I rushed home early the next morning to shower and change into a suit.

It was then I realized I had left my make-up bag at the hospital. There was no time to retrieve it.

So I lived my worst nightmare – not only public speaking, but public speaking without make-up.

I survived and the presentation was okay, but it wasn’t my finest hour.   Instead of feeling a sense of accomplishment or celebrating the end of the conference with a drink with colleagues, I was tired, discouraged and distracted.

Small talk during the breaks felt empty – I was too concerned about Miss Z to care about what someone did at some other company.

I left as soon as possible to return to the hospital.  It is impossible to explain how difficult it is to divide not only my time, but my attention, focus and energy between caring for Miss Z and my career.

The two feel like they’re forever at odds with each other.

Or how the constant worry, vigilance and never-ending to-do list associated with caring for Miss Z has slowly sapped away the passion and excitement I once had for my job.

Last year, I thought I had finally made a breakthrough. I was doing work that I enjoyed and had managed to organize new childcare for Miss Z that meant I was able to be more flexible with my working hours.

Miss Z was also going through a good patch and we had hardly spent any time at the hospital.

Unfortunately, that coincided with the arrival of a new management team, who decided to make me redundant and employ me as a contractor instead.   And then Miss Z became unwell, and the doctors decided that she is unlikely to recover.

My focus is now so firmly fixed on Miss Z – and the rest of my family – these days that it is difficult to find much enthusiasm for work.

I do it for the money and because I fear that not working at all will mean I’ll never be able to return to work.

And because occasionally I have the opportunity to give all my attention to my work and I remember why I used to enjoy it so much.

Watching my career crumble has been one of the hardest parts of being the mother of a child with special needs.

I know some parents of children with special needs have successfully balanced their careers and caring responsibilities, but I have not.

It is both easy and hard to accept.

My love for Miss Z and my desire to help her make the most of her life far outweighs any regrets about work.

There was never a question of which would come first – it was always and will always be Miss Z (and Vegemite, too).

But I sometimes still struggle with what that means for me, and my identity.

It is my work-life conundrum.

‘Mummy, are you channelling Anger or Disgust right now?’

‘I think Daddy…. Is it Anger?’

‘Mummy, Alex is mainly Sad now, isn’t he?’ (His top lip was wobbling, so I thought probably yes).

Which got me to thinking, has Alex got them all?

You’ll remember that Riley, as a baby, started out with just Joy, who was joined by Sadness and those were the only ones she needed for a while.

Alex, in his sometimes still quite baby-state, had he developed the rest?

Joy

Alex has Joy in abundance.

Sometimes I think he feels the whole world is just there to entertain him!

Which, you know, it does.

He delights in the world my little boy.

Toys that squeak and make a noise… going to bed nightlights that play music… everyone who tickles him… splashing in the pool, in the bath…all make him laugh.

And he still – still! – sometimes laughs so hard he falls over backwards.

He is the sunniest of children.

Unless…

Sadness

Unless… something upsets him.

Then joy turns to… ‘Waaaaaah!’

Loud noises can upset him… being told off very very firmly can upset him…. Food not coming quickly enough upsets him (though that just makes all of us laugh, which probably doesn’t help).

Waking up in the middle of the night with what I can only assume is a bad dream makes him sad… not feeling well understandably makes him sad.

Not. Getting. The. Out. Of. Reach. Toy.

Makes him Sad.

But we are able to make him feel better.

We can cuddle him, stroke him, tell him we love him, find that toy, feed him quicker and Sadness leaves.

Which is (ssssh!) quite, you know… normal.

But then, beyond those two…

Anger

This is primarily directed at anyone trying to make Alex do his physio.

I’ve lost count of the number of times he’s brought out of school accompanied by, ‘He got very angry at me today because we were doing physio!’

By angry, Alex gets very, very red in the face and cries.

But there are no tears.

He’s not upset just really, really annoyed.

And that’s OK with me because – annoying as it is (and it really is) – it’s a developmental stage, a connection; if I do this, they may stop trying to make me do this.

They don’t, but I like his thinking.

Fear

Alex walks beautifully holding on to both of my hands.

If I try to take my hand away, he stumbles, desperately trying to find my hand again.

That’s Fear.

Should I try and get him to slide out of bed when he can’t feel the floor with his feet he will slip and slide very slowly.

Very carefully.

Until he connects with the floor.

That’s fear.

He knows that he doesn’t feel safe.

He may not get that it will also hurt if he mis-steps, if he falls, but he realises when he doesn’t like something, when it makes him unsure, and there’s Fear (and a little caution).

Disgust

Only one word needed here: broccoli.