Special Needs Families: Society Is Just Not Accessible!

I’m hacked off.

I’m hacked off because we (the special needs parents), have to fight for everything.

We have to fight for more disabled parking spaces.

We have to fight to get our children the right support at school.

For the right diagnosis.

For a diagnosis.

For equipment.

For acknowledgment that we even need equipment.

For suitable changing facilities when we are out and about.

Which is surely just a basic human right, no?!?

We are fighting supermarkets to provide special needs seats in their trolleys so we can do something as simple as buy our groceries without the need for a babysitter!

Why do they want to make it hard for us to give them our hard earned cash when the cost of providing such seating is minimal to them in the big scheme of things?

And, from a public relations point of view, is going to gain them huge gold stars as well as more customers?

We have to fight for housing.

For adaptions.

For understanding.

For support.

We have to bloody well fight for everything!

Does the world not think we have fought enough?

Having a child with any additional needs is hard. It’s really hard.

Many of us have endured hideously difficult introductions to the world of parenting and have been fighting since the day our little beauties arrived on this earth.

How is it fair that that fight just seems to continue.

That unless we are very lucky, it will continue forever.

That we are unlikely to see a world that changes that dramatically in our lifetimes.

Yet it makes us tough. And it makes us focused.

And it makes us want to fight more… and so I am fighting for all of us.

I am going to make a difference, even if it’s a small one. I will challenge my local supermarkets.

Local businesses and anyone who will listen, to make a change.

I will challenge them to understand that there are thousands of families who contribute an incredible amount of money to society, who simply cannot access every day life properly.

And I will challenge them to do something about it.

If just one of you who reads this decides to challenge just one business, organisation or person who is making your life more difficult – whatever it may be – from lack of changing facilities to abuse of disabled parking facilities – then we will slowly start to build a world that our children can enjoy growing up in.

I hate being so negative all the time.

And I beat myself up for it as we should always try to see the positives in our situations right?

But some days, it feels like the world is against us.

Now please help me down from here.

I need to go to bed. X

7 Things To Do When Planning Your Special Needs Child’s Future

1.  Set up a will:

You must consult with an attorney who specializes in disability planning for this endeavor.

Be sure to appoint a guardian and standby guardian for your child in your will.

You don’t want the courts appointing one for your child in the event that something should happen to you and your child’s other parent.

Your will must be set up with special instructions for any amounts of money your child may inherit or life insurance policy payouts he or she may receive to be deposited into a Special Needs Trust Fund.

2.  Set up a Special Needs Trust Fund:

You’ll need to hire an attorney to set this up for you as well.

Leaving money or assets to your special needs child can be tricky.

It is of the utmost importance that this is set up correctly!!

You don’t want to jeopardize your child’s government disability entitlements such as SSI or Medicaid by leaving them money or property improperly.

3.  Petition the courts for guardianship of your child:

Until any child is 18, his parents are considered by the courts to be his legal guardians.

Once he turns 18 however, that is no longer the case.

Regardless if your child has a disability or special need, once your child turns 18, the court will assume that your he or she is an adult as well.

The whole process of petitioning the courts for guardianship absolutely must be completed BEFORE your child turns 18, because the second he turns 18 it will be assumed that he is a responsible adult, capable of making his own decisions.

It is highly possible that if you find yourself in an emergency situation after your child turns 18, you are not his legal guardian, and it is determined that your child is not capable of making his own decisions, that a temporary guardian could be appointed by the courts to make decisions for him, regardless you, the parent’s wishes!

4. Apply for special needs government financial entitlements: 

There are many government financial resources available to qualifying individuals with disabilities.

In the US we have Supplemental Security Income or SSI which provides a monthly income to children and adults with disabilities who cannot work.

You can apply for SSI at any time in your child’s life, but until they are 18 their parents’ income will count in determining their eligibility.

Once your child turns 18 however, parents income no longer counts and most individuals are determined to be eligible.

Most states also have Medicaid Waivers available.

Children or adults with significant disabilities and medical costs are usually eligible for this government medical insurance program.

Parents income doesn’t count in determining eligibility.

Some states even have a Home of Your Own Program that helps individuals with disabilities buy and maintain their own homes.

Your child may also be eligible for food stamps and funds for heating their home.

5. Apply for special needs services:

Your child may be eligible for another service that is available in most communities called the Home and Community Based Waiver.

This service offers case managers or service coordinators to assist in ensuring that your child is receiving all the help that is available to him.

Examples could include respite workers, home health aides, home health nurses, community habilitation workers, job coaches, community transportation, gym memberships, hippotherapy, music therapy, art therapy. etc.

6. Decide where your child with life after you are gone:

Where would you like your child to live after you are gone?

There a few options to choose from, including but not limited to: living with a sibling, in a group home, in a supported apartment, in a shared apartment with other disabled individuals, or in their own home with the live-in staff.

7. Write a letter of intent: 

This is a letter for your child’s future guardians intended to let them know how you’d like your child’s life to be after you’re gone.

It should include where you want your child to live, community activities your child would like to continue participating in, your child’s place of worship, your child’s friends, favorite foods, favorite activities, and all medical information.

I know it can be heartbreaking for parents of a precious, beloved child with disabilities to think about the time when they will no longer be there to love, care for, and protect them, but with a little careful planning and making a few informed, well thought out decisions you can achieve a measure of peace knowing that you have planned and provided for your child as much as is humanly possible!

Online Resources:

SSI Benefits / Home and Community Based Waivers / Medicaid Waiver

7 Physical Therapy Tips For When Your Child HATES, ‘Tummy Time’.

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.

Extreme Changing: Special Needs Families

Sadly, I’m not talking about anything spicy in our relationship, just the sometimes rather urgent need to change our daughter’s nappy (diaper) coupled with her innate ability to need this at the most inconvenient times and places.

The ultimate nappy change came at a rather important and highly public event.

We had been asked as a family to light the Advent candle at the Christmas fundraising carol concert for Demelza House Hospice.

The venue, Canterbury Cathedral holds over 1,000 people when full and that night there was standing room only.

As well as helping our daughter to light the candle I was giving a reading to the congregation, which would have made the most experienced of public speakers nervous.

My main concern, however, was where to change the star of the show’s bottom.

I needn’t have worried however as a kind Verger showed us to the Chapter House (a 12th century stained glassed room with carved stone benches) and said we could do it there – probably a first for the Cathedral and definitely one for us!

There are other times however when the simple facilities of a, ‘baby’, change or drop down bench really should be part of the offer.

I include motorway service stations, shopping centres and visitor attractions as essential places to get this right.

They are after all places where families are going to visit.

I’ve become a bit anal (excuse the pun) about the size and strength of change beds as some are suitable for my slight but growing 6 six year old and some require the balancing skills of a gymnast whilst I prop the bed up with a raised knee and stand on one leg grabbing nappy, bag, cream etc with one hand and holding onto my child with the other.

I have also experienced once too often the humiliation and fear of changing her laid down on a smelly toilet cubicle floor.

I happily name and shame Euro Disney as one of those places, shocked as I was that there were no facilities for changing older children or adults.

On my return home, I emailed them directly and was told that they make the bed in the first aid room available for this.

My question, “What happens if there is an ill person on the bed?” was left unanswered.

My frustration lead me to think there must be a solution that puts the power back in the hands of parents and carers.

Firefly then launched H.A.T.C.H inviting ideas for possible products to be created by them.

I jumped at the chance and submitted a basic plan of a light weight portable change bed that parents/carers can fold up and take with them.

It’s still early stages but I’m excited to say that Firefly like the idea and have agreed to take things further.

It’s not a Changing Places, and yes there should be more of those, but it is a simple answer that many parents of disabled children face and I’m really hoping that if successful, visitor attractions buy them too as part of the Firefly Space to Change Campaign.

In the meantime, I’m keeping a log of our strange nappy changing adventures, the latest being a dedicated, ‘baby change’, portaloo at a cider festival, now that’s what I call service!

Special Needs Parenting: Autism – It’s A Lonely Old World

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.

Special Needs Parenting: Blues and Twos

Oh you are so lucky, my son loves, “Nee-Naws”, he’d LOVE to go in an ambulance with the blue lights on!!

There were others of a similar ignorant vain.

I’m afraid, dear reader, I let rip.

Full throttle.

How utterly idiotic to think that a child so seriously ill to require blue lights on a trip to hospital is going to be thrilled by them?

WHY are people so self obsessed these days that they can only think about what their charming little darling would like?

How out of touch does a parent of a healthy child have to be to not be able to imagine themselves in that situation?

Ambulances are not comfortable, ‘fun’, places to be.

They are hard, uncomfortable bumpy rides and you usually have to sit with your back to the direction of travel – a quick route to travel sickness.

The sirens are loud in an echo like way – ominous even and when things really have gotten bad, the medical staff are so engrossed in their jobs that it is silent – save for the sounds of the equipment being used.

They are work horses designed for a serious job, not rides at an amusement park.

Making a 999 call for your ill child is surreal.

Panic gives way to a calm resolution that you need help, quickly and their care is now beyond your capabilities.

Making the call for the third, fourth or more time doesn’t make it any easier.

Each time you are willing for the person on the other end of the phone to tell you you’ve got it wrong, or the ambulance staff to do something simple to fix things at home.

I’ve also felt all sorts of strange emotions after making the call.

Embarrassment that the sirens and lights will wake my neighbours in the middle of the night.

Apologetic to the ambulance staff for calling them out and I’ve even cracked jokes with them to try and lighten the mood.

Shock and fear it would appear have the same effect on me as alcohol.

Driving behind an ambulance that is taking your child to hospital is also odd.

Your heart and soul travel in the vehicle in front of you, your hopes and fears stay at home.

I used to think, ‘nee-naws’, were exciting too, now, I flinch every time I see an ambulance travelling with its blue lights on and feel thankful that we are not the ones needing it this time.

Special Needs Equipment and the Heartache That Can Come With It

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.

Please Take My Hand:  (Four Steps to Asking for Help on the Special Needs Journey)

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.

GoTo Shop Trolley Dash

Not because of her behaviour or risk of grabbing things off of shelves (although she’s cottoning on to that one), but because now she is six she just doesn’t fit into the shopping trolley seats anymore.

If in the past I managed to get her into one easily enough, the reverse move at the end of our shopping trip proved much more difficult.

Her feet would hook onto the horizontal bar and we’d caught up in a mild tug of war whilst I grappled with releasing each foot at the same time as lifting her out with the other arm.

That should have been reason enough to quit, but it was something that happened inside the store which saw the end to us using the ‘ordinary’ shopping trolley.

We were minding our own business, wandering through the more ‘fun’ clothing section when we were approached by a family (three kids and a mum).

The smallest child, a girl about three years old barked out a loud laugh and pointed at Lucy repeatedly shouting “Baby, LOOOOOK, Baby!!!”

The other children turned to us and all laughed, the mother looked amused and didn’t tell off her child or apologise to us and to my horror I saw an expression on Lucy’s face that I’d never seen before.

Embarrassment.

There sat my lovely, brave little profoundly disabled girl looking awkward and upset.

I hated that brat of a child for pointing to Lucy and making fun of us, but hated myself even more for not saying anything to the parent.

We left the shop quickly and I broke down in tears once back in our car.

I vowed to never let that happen again and be better prepared with an answer the next time we were singled out, the trouble is you never know when that will be.

A year or so on and I heard that Firefly were holding a campaign to sign up all major UK supermarkets to get their GoTo Shop Trolleys.

So I emailed them, I spread the word on social media and encouraged other local special needs mums to do the same.

To my delight Tesco chose my local store to be one of only three in the country to trial the new trolley with an accessible seat.

Then, to my shock, Lucy and I were invited to launch the trial in our store!

The day of the trial arrived and as we entered Tesco, we were greeted by a group of smiling faces and ushered into a cordoned off area in the cafe where they had coffee and cakes waiting as well as two huge balloons and a present for Lucy (it was the day after her 6th birthday).

We then tried the trolley around the store whilst a photographer from the local newspaper took dozens of pictures.

The trolley was easier to push than I thought it would be and I quickly learned a way of turning it around without needing a 20 point turn.

We got attention from the other shoppers, lots of eyes were on us, but for the first time in that store I was pleased about this as we were showing off a new trolley that is going to help so many families.

People have suggested to me that I could just shop online instead, or go when Lucy is at school.

All true, but Lucy is part of her community too, why shouldn’t I be able to take my child shopping, to experience everyday life and maybe even one day help me choose things off of the shelf?

I’m so grateful to Firefly for inventing practical solutions to everyday problems faced by families with disabled children.

Perhaps this will bring us closer to a day when people don’t point and laugh at disabled people or at least realise that it’s just not OK to do this.

To support the GoTo Shop Trolley Campaign you can download and print a leaflet to hand in to your local store.