Stoked for Speechless: Special Needs Parents Eager for New ABC Sitcom

Special needs parents are already building anticipation for ABC’s new sitcom, Speechless.

Airing this fall, Speechless centers around the life of a non-verbal child with special needs, played by Micah Fowler, who also has cerebral palsy in real life. 

ABC is no stranger to airing shows which have a character with a major disability, and in the past have tackled the theme of special needs within a family dynamic. 

In 1989, Life Goes On first aired, which depicted a family with three children, one of whom was a child with Down’s syndrome. This was the first television series to have a major character with Down’s syndrome.

NBC also had a television series Parenthood, which ran for over six seasons and had a character with Asperger syndrome. 

The special needs community applaud the effort of television networks willing to tackle hard and intense dialogs, conversations and life with a child who has special needs.

Speechless which is slotted to air this fall on Wednesdays from 8:30pm to 9:00pm stars Minnie Driver, who plays Maya Dimeo, a dedicated mom determined to better her children’s lives and the life of her child with special needs. 

The trailer offers viewers a glance at the realistic humor with hints of real life drama that resonates with familiarity within the special needs community.

If you ask many families who have children with special needs they often feel as if society has no real understanding of the real life challenges faced by those with a child with special needs.

Networks willing to dive into these topics and accurately reflect the real life challenges with a hint of humor, aim to bring awareness and offer sincerity to the gravity of special needs parenting.

Most importantly we want something on television we can relate to. 

We want something that we see in our daily lives.

When the majority of television programming featuring families that do not have a special needs family dynamic it feels alienating.

Like you are an outsider looking in, simply window-shopping a program that you can’t identify with.

We want to turn on the television and watch a family who is tackling day to day challenges just like ours.

Based on the newly released first trailer, Speechless aims to deliver just what we’ve been looking for!

 

Note Image credit: Speechless Official Trailer. Watch it here.

The Curiosity of a New Wheelchair

We had no doubt that Oliver would take to using it right away, since we had so much practice in his bumbo wheelchair.

A couple pounds heavier, he was soon using it like a pro.

Aaron and I just had to face our fear of bringing it out in public for the first time.

Now don’t get me wrong, we were not ashamed, embarrassed or anything of that nature.

We did have this little flight of excitement with the thought of him being able to finally explore his surroundings out in public and not just be pushed around in the stroller.

We saw what an improvement it made just being able to roam around the house in the little bumbo wheelchair, we could only imagine what taking him to the store or zoo would be like for him!

What we did not expect, nor were we quite ready for, were the stares.

The prolonged looks, whispering under one’s breath, and the questions.

Sure, we got the stares before when Oliver had to go through serial leg casting of both legs… but we just figured they thought he broke his legs and never really got any questions, but rather assumptions from anyone who approached us.

Once he finished the casting, Oliver just appeared like any other two year old in a stroller.

We were never anywhere long enough for anyone to realize he was not walking like the rest his age, or ask why.

So once he got his wheelchair, it was kind of like BAM! Look at me.. I am in a wheelchair. So, right away you know that I cannot walk for whatever reason. (Which is not always the case, as some use it for long distances even though they can indeed walk short distances, etc.)

Not only is it visually inviting one to ask questions, but most people have actually never seen a wheelchair come in such a small size.

I know I had no clue previous to Oliver’s diagnosis, that equipment like this and in this size existed.

After our first two outings with Oliver and the new chair, Aaron and I found ourselves uncomfortable and like the odd balls out.

I could at least be happy knowing that Oliver was still too young and oblivious to the fact that everyone was staring at him and the chair more so than how cute and awesome he is in it.

I knew I had to do something… I knew that as I was before, all these people were staring and asking questions for the simple fact that they were curious.

They did not know, therefore went out in whatever fashion to find out for themselves or just flat out stare.

So I decided to take to social media for help!

The city I live in has a group on Facebook for mothers to join and post questions they may have, sales going on, advice, or anything of that nature.

I knew it was the perfect platform to take in educating the ever curious.

In a short and sweet post, I introduced my son Oliver (pictured in his new chair) and basically let everyone know they would undoubtedly be seeing us around town at some point or another.

I shared why he used the chair and that this chair was no binding deal, but in fact a mode of transportation to allow him to explore and be independent.

I invited anyone to ask questions and was surprised by the overwhelming response we received.

So many blessings and welcoming greets.

Even pictures and stories of other children in the community who had their very own chairs!

With one little post, one little share, I was able to bring everyone just a little bit closer into understanding something just a little bit different.

Don’t Underestimate His Silence

Our three year old cannot talk.

He can’t say, “Mom, I need your help!” He can’t sing his alphabet or count to ten.

He cannot name anyone in his family with labels or first names, except, “Bru­va”, which is new and amazing.

He is unable to tell me any of his wants or needs with words. But I need to make one thing clear.

He is smart. He knows exactly what is going on around him.

You see, I can’t tell you how many times people have said things to me like, “Do you think he understands?” or, “Does he really know this or that?”

I am tired of people treating him as though he is, dare I say it? Stupid.

We don’t use the word, “stupid”, in our house so I’m stepping out as I type it.

Please don’t tell my five year old or I will most definitely get a timeout.

It saddens me that just because our youngest cannot speak, he is perceived as less than what he is.

The list of things he cannot do goes on and on, but one thing he does very well is understand the world around him.

His planning and processing takes much longer, and he’s limited by the control of his extremities.

He’s so much smarter than many people give him credit for. I’m upset that he is underestimated time and time again.

He is silly and understands silly play.

He understands voice tones and giggles at all the appropriate times.

He is manipulative. He knows his high pitched squeal will garner attention and has no problem using it when it suits him.

His face lights up when I ask him if he’d like to go read books or take a bath.

He shakes his head now when he is done with me offering him tastes of food during dinner.

He grins when we walk into preschool to pick up his older brother and cries when we walk into therapy, fully aware that hard work awaits him.

Please don’t underestimate his silence.

Please stop questioning his ability to understand.

No, he cannot speak with words to validate his thoughts, but look into his eyes and you will see all of the answers you need.

Friendships Are Like Gold

Having Zachariah has only made some of these friendships much more important and special. Not only have they become stronger but my son has adopted some more incredible aunties in addition to his family who absolutely dote on him.

Why are they so incredible?

They will text me before and after appointments, whether they are big or small. Not only this, but they will offer to come along if close family can’t make it.

They want all the details and will pray for anything that is needed, and research anything they don’t understand to ensure they are on this journey alongside us.

They are just as knowledgeable about Zachariah’s condition, therapy and development progress as I am.

They get excited about absolutely everything Zachariah accomplishes, I mean EVERYTHING!

Every smile and giggle, every time he catches your eye, they celebrate.

Having a son with very complex needs and severe visual impairment requires a lot of patience, there can sometimes be a long wait to receive a reaction from him, this patience is something my friends have.

They have such a special bond with him and it’s all because they have invested so much time to get to know and love him.

They teach their children how to communicate and play with Zachariah, inclusion for my son is one of my biggest goals that I aim for daily.

It is so important to me that he is never left behind, my friends children are beautiful little characters who make Zachariah most welcome to their activities and always talk to him so he knows they are there.

Sometimes this means that they push him around in his chair or they help dress him, all simple things to others but so precious to me.

Zachariah loves growing up around his friends, the craziness and the laughter they bring is priceless! I thank my friends for this!

Through all the laughter, tears and worry my friends have stood by me and my little family, they have loved, supported and encouraged me as a special needs mummy.

They plan days out together around Zachariah and ensure there’s something for him to do and somewhere accessible and actively seek places to recommend for him to go.

I do not know where I would be without them!

I love my friends and everything they do for me.

Rochelle, mummy to Zachariah xx

The Guilt of a Second Child

Oliver, my sweet first born, came into this world early and with a diagnosis of spina bifida.

It’s not that we saw ourselves as risk takers to the mere three percent increased risk, but rather we chose not to fear his or another diagnosis for our future children.

Twenty-two weeks now, and as you can imagine we have already gone through the motions of high risk testing, blood work, and ultrasounds.

Up until now, I guess I spent so much time preparing myself for another phone call and hearing the voice on the other end read off another diagnosis, that I failed to prepare myself for that same voice telling me that all tests came back showing no sign of spina bifida.

First, it was our blood work that came back.

The good ol’ second trimester screening that first clued us into Oliver’s neural tube defect. It had shown that my AFP (alpha feta protein) levels were merely above the normal range.

Tapping into other women’s opinions on a quad-testing board, I was somewhat comforted by the responses claiming their levels were much higher and they ended up giving birth to healthy babies.

Obviously, although healthy in my eyes, that was not the case for me and Oliver was born with spina bifida myelomeningocele.

Back to Theodore (which is what Aaron and I have decided to name him), my blood work came back with everything in normal range.

It was a good sign but these tests are just screenings, not finals says. I was in the middle of my 17th week, when I went in for a routine ultrasound. Or so I thought.

I ended up having my anatomy scan, without any time to prepare myself for what I may or may not hear from the doctor.

With Oliver, we had countless ultrasounds. One every week just about!

I actually have a baby book purely designated to his ultrasound images and scans. Once we knew what to look for, it wasn’t hard seeing what was clearly there.

An open sac where his spine failed to fuse together and close on its own. Even the misshapen skull and fluid on his brain were obvious to us now.

So here I was, during Theodore’s scan, trying to play doctor and look out for all the obvious signs of this defect.

When it was confirmed that indeed nothing presented itself as, “out of the ordinary”, and seemed to be going as it should, I felt this pain. Almost like an emptiness.

I had pictured a concerned tech calling in the doctor, the doctor grabbing tissues again as he explained to me the findings. I had imagined feeling prepared for another baby with spina bifida.

Not a baby boy with no diagnosis.

Not having an uneventful birth, or doctor visits few and far between, or even a child who had no doubt that he would walk in his near future. I was not prepared for the guilt I felt, knowing that Oliver might one day feel different than his siblings.

Although it is still something I am learning to cope with, as each day passes, I can only do my best as a mother to instill in my children that they are all made with different qualities that make them awesome!

Hormones are never good in an equation like this, but for those who have already had children after having a child with a diagnosis, I would love to hear how got through it all.

How did you manage to rise above the negative feelings or quilt?

What is it like now?

8 Tips To Help You Get A Good Night’s Sleep

Through my own mission to get good quality zzzs, I have collected a selection of tools that really have helped me. They might be obvious, but in your sleepy state they may not be at the forefront of your mind.

Feel free to use one or all, building it into your day.

It only takes a few minutes and could work wonders!

1. Eye Eye Captain

An eye patch can really help to shut out the world and calm down your brain in order to get to sleep quickly.

This is particularly relevant at the moment with all the light evenings and early mornings.

I wear it every night without fail.

2. Crank Up the Routine

Whatever time you are going to bed at the moment, give yourself the best lead up you can.

This doesn’t have to involve elaborate rituals, but winding down at least one hour before getting into bed including no caffeinated drinks or stimulating activities can really help to get you off to slumberland.

3. Be A Bit Boring About Bedtime

To really get your body in the sleep groove, go to bed at the same time every night, even on weekends.

If you are getting up in the night to take care of your child, it is an idea to go to bed early.

Give yourself as much chance to fill the sleep tank as possible.

4. Drink A Sleepy Blend or Milky Drink

I’ve tried a few of these. Good old Horlicks is calming, warm and lovely.

I have also been trialling some sleep infusions. Sleep Easy and Snore and Peace by clipper are fantastic.

They have a lovely blend of lavender and chamomile as well as things like orange and cinnamon. The aroma really helps to relax down too.

5. Hot Shower or Bath

As a parent, I don’t get time to have a bath before bed now, but scientifically it is a very good sleep aid.

Our bodies have an internal thermostat and once it cools down it acts as a sleepy switch.

Instead of a bath, I now have a very quick hot shower before bed, it really works and is very relaxing!

6. Pillow Spray/Candle

Before getting into bed I lit a lavender candle for a while until I had finished reading. It really helped me to feel relaxed and definitely helped get me to sleep.

The problem was I couldn’t keep lighting it when I woke up in the night. Instead I ordered a pillow spray from This Works. And it really does!

Just inhaling the waft of a few spritzes has me falling into a deep sleep. If I wake in the night I give it another spray and hey presto!

7. Read the Psalms

Reading these can bring great encouragement and comfort; here is a link to pick one out.

Psalm 4 or 23 are especially recommended.

You have put more joy in my heart than they have when their grain and wine abound. 
In peace I will both lie down and sleep; for you alone, O LORD, make me dwell in safety.”
Psalm 4:7,8

8. Read a Few Pages of a Book

Even if it’s just five minutes – this can also help to take your mind off the day and transport you somewhere else.

This distraction can really help your brain to wind down.

 

To quote Dr Weissbluth, the most important goal is a well-rested family, and hopefully these tips can ensure you can get to sleep too!

Holidaying… With A Tubie

It is also our first time staying in a caravan (granted, a posh one) with Sam and only the second time we’ve been away since he had his PEG fitted.

Now, formula isn’t an issue as we just need to make sure we have sufficient sachets to make up his milk… the blended diet aspect however is requiring rather more planning. 

Think of it as a week-long picnic, but with the planning involved for a small military campaign…

The prospect of making up enough blended feeds for a week plus transporting them from one end of the country to the other does not fill me with joy.

Currently, Sam’s feeds are done in batches; each recipe is then split into the correct portion sizes to give him around 250 calories per portion.

Sam CAN taste his meals even though they go straight into his stomach (think burping… sorry), so we try and give him different meals for each feed so he doesn’t have a whole day with just one blend.

Like anyone else, he’d get very bored, very quickly.

Usually we use storage pots into which we portion up the blends, cool them and freeze, labelling as we go.

This also means that a week’s worth of blended meals will take up considerable freezer space, which we simply won’t have in said caravan.

Hmmm . . .

As the prospect of carting our beloved vitamix with us fills me with dread (have you seen how expensive those things are, not to mention the amount of power they use!), there has been some considerable research done into alternatives… unfortunately none of the options are going to be suitable for us.

A lot of families use the reusable, sterilizable baby food pouches, but the volume of Sam’s meals means that these aren’t big enough.

Knew it wouldn’t be that simple!

Another alternative option was a nutri bullet type blender that would be fine for smaller batches… however as money is tight that isn’t an option either.

So… not so much back to the drawing board as back to the vitamix.

Yes folks, you’ve guessed it, it’s coming with us.

So if the news reports a black out across a caravan site in Devon next week, you’ll know who’s to blame! x

Tube vs Food: Are We Making The Right Decision?

He was weak and tired and needed it to be just a little easier to get milk. After trying everything we had to get him on the bottle for his health, his jaundice was very apparent and he was sleeping a lot.

Once he got the knack of drinking from a bottle, there was no stopping him, he was a greedy boy, nothing pleased me more than giving him a bottle and having to up the ounces so quickly.

Very soon it was the next stage! FOOD! And didn’t he just love it!

There was nothing Zachariah didn’t like, he would eat and eat and eat. I was so pleased to see him enjoy the adventures of food.

But then there was the drink, I tried to give him bits of water from his bottle, but he would struggle so much, he would gag and cough and almost choke from little bits of water.

I put it down to it being a different texture to milk, it was fast flowing and he would get used to it.

At seven months old he was referred to a Speech and Language Therapist. Who knew that they specialised in feeding as well as communication?

I remember feeling rather confident attending this meeting, as this was Zachariah’s strong point, he was good with his grub, and this was time for him to go to an appointment and show off his skills.

However when she watched him eat she was concerned, she started to talk about aspiration and a videofluoroscopy. What is she talking about?

This was the start of something else, another issue to to worry about, someone else to come to our home monthly. I was gutted.

The therapist started her visits and taught me how to feed Zachariah the safest way, he was introduced to thickener to allow him to have fluids and had to stick to a blended food diet, he tried little bits of toast and soft snacks, but it was just not worth it, it was such a hazard as he would gag and struggle.

He had a videofluoroscopy which showed he was aspirating and that concluded that it would be much safer for Zachariah to be tube fed. I was devastated. 

I didn’t really believe it, my little boy who loved food so much would have it taken away and have it pumped straight into his tummy instead.

His favourite part of the day was being ripped away!

At first we refused, said no to his consultant and no to the surgeon, we couldn’t give up on him yet.

A few months passed and it was clear that Zachariah was only struggling more and more, it wasn’t worth the risk anymore. I just wanted him to be safe.

I started to look at the positives, that he would have stress free days fighting with food when he wasn’t feeling great, he would get all of his medication as he wouldn’t be able to spit it out, and he would have more time for fun and therapy.

So now it’s the waiting game for his date to go and have a gastrostomy, and all I can question is whether or not we’re making the right decision!

I love my Boy!

Rochelle, Mummy to Zachariah. Xx

Changing Places in the EU! Call to action:

My Changing Place campaigner, Tony Clough is well known in campaigning circles for his family’s success in improving Changing Place toilet provision in the UK and the provision of Eagle Hoists in airports around the world.

In his latest endeavour he has met with Dan Dalton MEP for West Midlands to call for better quality disabled toilets at transport hubs and tourist destinations in the European Union.

Daniel was so inspired by the Clough family that he has recently launched a Written Declaration in the European Parliament. The Commissioner had promised to look at the issue in more detail and it is likely that Tony will travel to Brussels next month.

But Tony needs YOUR help…

He is asking you to contact your local Member of the European Parliament (MEP) to make them aware of the need for Changing Places toilets. Very few Changing Places toilets exist in European airports, towns/city centres or tourist attractions.

Improving the situation in the rest of Europe will allow disabled UK passengers to travel secure in the knowledge that their toileting needs can be met safely and with dignity. It will of course improve the lives of people with disabilities living in those European countries.

It’s really easy to get involved…

Use the template below to make your MEP aware of the need for Changing Places toilets, alternatively you can personalise the template and share your experiences:

Dear

I am contacting you today to ask that you support Daniel Dalton‘s Written Declaration (WD 44/2016), to support the growth of accessible toilets for people with disabilities in the European Union.

1 in 6 people in the EU have some form of disability. Disabled people are now the largest Minority Group.

Changing Places toilets provide enough space to accommodate a disabled person and their carers together with equipment that includes a height adjustable changing bench and overhead hoist making it possible to have their toileting needs met safely, with dignity and in a clean environment.

The alternatives are – 

– That severely disabled children and adults are changed on the floor, which usually means the floor of public disabled toilet, causing great distress and embarrassment to the person with the disability and posing great risk to both them and their carer(s) 

– The person is left to sit in incontinence pads for prolonged periods of time, which is not only unpleasant for the person and those in their company but can cause long term health problems

– People with disabilities and their family simply do not travel and can not enjoy the European destinations that the rest of us take for granted

There are over 800 Changing Places toilets in the UK but very few exist in European destinations including – travel hubs, tourist attractions and town/city centres.

Many people are unaware of the need for Changing Places toilets or the fact that it is commonplace for families and carers to have to change their loved ones on toilet floors.

However, Changing Places toilets are needed by people with profound and multiple learning difficulties, older people, people with cerebral palsy, acquired brain injury, Multiple Sclerosis, Spina Bifida and Motor Neurone Disease. 

As we live longer and the number of people with complex medical conditions and disabilities is growing, in everyone’s lifetime there is the chance that you or someone you care for will need a Changing Places toilet.

It’s a very exciting development that a discussion is taking place on European platform and that this issue is being considered by the Commissioner. Although it directly impacts the disabled community, it is an issue that everyone should take an interest in as all of us are only an illness or an accident away from needing these facilities.

Changing Places toilets are vital in ensuring that people with disabilities and their families have access to and are fully included in every aspect of our Society including European travel.

I am asking that you extend your support to Daniel Dalton’s Written Declaration and when you have the opportunity you raise this issue with your fellow MEPs.

Thank you in advance on behalf of my family and the growing community of people who need these facilities.

Kind Regards

 

Notes:

Changing Places toilets are provided in addition to other accessible toilet facilities. They are a minimum of 12 sqm and include as standard conventional wheelchair accessible toilet equipment plus a tracking hoist or mobile hoist, height-adjustable adult-sized changing bench privacy screen, grab rails, paper roll, non-slip floor and waste disposal unit.

If you are campaigning for improved accessible toilet facilities in your area or if you have struggled to access appropriate toilet facilities away from home – please get in touch!