Communication and One-Sided Conversations

I feel that it is fair to say that this is further amplified when your child has not got the ability to communicate verbally.

Above everything else, my wish for her to communicate is the thing I grieve over most.

People ask me with great regularity if she will ever eat, sit, walk, and so on. All of those things I can cope with as long as she has choices in the world, and opinions heard.

I so desperately want to know exactly how her day was, what is paining her or upsetting her, or answer questions for her.

I am however, a very strong believer that most communication is nonverbal. From knowing my daughter how I do I can ensure you that she does an incredible job of making her feelings known.

She has a vast range of sounds to help me know how she is feeling. She will shriek and giggle wildly when a great song comes on, and she will grunt and shout angrily when the wrong song comes on.

I’m not sure if she knows no different, or if internally her brain is cursing her body for not doing what she wants it to do.

I know she gets frustrated and I know it must be really hard for her when she can’t directly tell me something and I’m getting myself in a flap trying to decode her sounds and movements.

People who aren’t familiar with her often misread her signals. It saddens me as I know how much she loves and craves for social interaction but must get confused when she is not being understood.

For example, if she feels insecure or anxious her dyskinetic movements will increase.

Her legs will start to kick frantically and her arms will flail around uncontrollably.

A few people now have said, “ooh are you dancing?” to her.

I silently cringe when things like this are said and don’t always know what to say.

I know that their comment is well intended and bears no malice whatsoever.

I’m pleased that they are interacting with her and don’t ever want to discourage people from that.

I fumble about trying to find the right thing to say, getting myself quite tight chested and breathless.

I then start to doubt myself, what if she is in fact dancing and it is me that is translating her movements incorrectly? I usually just say, “ah yes, she likes to have a wriggle around,” or, “she never stops this one!” – something light-hearted.

I ask her if she wants to wave to the stranger… to which she either will or won’t.

We all smile, and parts ways. Another interaction well negotiated.

Phew.

Long term our aim will be to use PECs symbols and eye gaze technology to help Amy interact with us.

This will take so much time, energy and effort, from all of us, but if successful will give Amy the platform she needs and deserves to give her her own voice.

She recently trialled an eye gaze and played a game where you look at the radio and it plays music.

This will teach her to look at and interact with the screen and that she will get cause and effect.

I know that this will probably take a long time.

It’s a pretty abstract concept for her to look at a screen and realise that she is in fact in control of it… unlike when she watches YouTube on TV and takes for granted that the work is being done for her.

I often worry that I am constantly bringing things to her and deciding on her behalf what she might want. It seems very unfair and one sided and I try to present different options each time.

This is the problem with being non mobile as well as nonverbal. If she could go to what she wants, or she could point, then this would be less frustrating for her.

So we need to be as inventive as we can and use technology as much as we can to try and open those gates for her and make sure the world around her is how she wants it to be.

I really think you can mourn something you never had.

I do wish she would incessantly ask me the same questions over and over, “Are we nearly there yet?” and, “When’s daddy home?” etc.

I wish that when I asked about her day she told me she did “nothing” but I try not to dwell too much on that as my energy is better spent working on realistic goals.

I was such a chatterbox as a child, and I still am now when with the right people. I bet my mum wanted to wear ear plugs most of the time. I wish I had that. I just wish it could be easier for her and for me.

I am so proud of how far she has come and how hard she works every day to make her voice heard.

I love that she never becomes passive and will passionately pursue getting what she wants regardless of whether it is by word or not. We are so lucky that technology is where it is at now.

The only obstacle I see in the future is perhaps funding, but I know we have enough support around us to overcome this and hopefully help others in a similar situation.

Eye gaze, PODD, PECs, switches, the list goes on and on. It has been a huge learning curve for me and one that has made me a better and more intuitive and patient person. I’m so grateful for that.

It fills me with so much joy when she shows that she has understood what I have said. I know now that she understands when we are going to the car, and also who we are going to see.

I was once told “if you’re not absolutely sick of repeating yourself, you’re not saying it enough”, and it’s so true. The more you put in the more you will hopefully get back.

Finding ways to keep learning fun when I know her energy levels aren’t always high is also a challenge. I love how school work with her and how her family speak with her.

I’m cautiously optimistic that I will look back on this post in ten years’ time and think wow, I can’t believe we ever worried about that stuff… look how far we have come.

I hope that our community will better understand disabilities and different ways of communicating and that we will all work together to make sure everyone’s needs are met, whether they ask verbally, or not.

Special Needs Parenting: Holiday Heartache

Such a wonderful time of year that brings many so much joy.
I love Christmas, but it can also be a time of sad reminders for parents like me.

As much joy as the season brings it also can bring parents glimpses into a life that we may have longed for.

A life that we may have planned out for our child.
It is another reminder to us about how different our lives are, reminding us of all of the “typical” things we occasionally miss out on.
Our 4 year old was born with a metabolic condition that affects nearly every part of his body.
Not only is he medically complex but he’s also nonverbal and severely developmentally delayed.
He is also extremely sweet and has a face that’s hard not to love.

And like birthdays, Christmas is a time of year that can occasionally be a difficult time.

I have cried in the children’s toy section, more than once.
I have shed tears looking at toys geared towards children years younger than my son knowing he still doesn’t have either the skills or cognition to play with them.
I have texted a girlfriend who “gets it” while trying to come up with a Christmas wish list for our son that doesn’t have vitamins, skin cream, or therapy equipment.
I needed to talk to someone who truly understands just how sad I was feeling at that moment.
I have turned down invitations to gatherings we truly would love to be at.
We have tried attending events only to leave within minutes, realizing our son couldn’t handle the environment or the space was not wheelchair accessible.
There are so many wonderful holiday experiences that children like mine either can’t or won’t participate in.
Holiday parties can be loud and overwhelming, and where there’s a lot of people there could also be winter colds or flu bugs hanging around.
These germs have the potential to send our son to the hospital, and that’s a risk we aren’t willing to take.
Outdoor events aren’t safe for our son’s health with his inability to regulate his temperature, and wheelchairs aren’t
exactly easy to push in snow.

I know gift giving can be so hard for family as they try to find an appropriate gift.

As much joy as this season brings it can also make parents like me retreat into the safety of our homes.
So, please be patient with us.
We may turn down your invitations but know that we truly would love to celebrate the season with you and appreciate your invitation more than we may express.
We might have a day or two where we aren’t in the mood to spread holiday cheer; please understand we may be hurting.
We may go silent when you talk about your festivegatherings, gift buying, or snowman making with your children.

Please know we are overjoyed for you and your enjoyment but somewhere inside of us we may be wishing for the same experiences.

I love the holidays but there are days when it can bring some unwanted feelings that isn’t just joy.

Let’s Hear it for the Carers!

They shop, eat, have families and do everyday things like we all do. These people do not look any different from you or I but when you get to know them and find out what they do to earn a living, these people are remarkable.

A lot of these people do not get paid enough.

A lot of these people do not do their job for financial reward.

Nearly all of these people absolutely love their job.

I have wondered, in a different life, if I would have ever considered their job as a career. My honest answer is no. I guess that’s why I find these people fascinating on one hand and amazing on the other.

The mornings are cold, dark and wet. There’s a tap on my front door at 7.45 am, that tap can be timed to the minute.

I open to door to be greeted with a huge big smile and a quick weather report. He makes his way up the stairs and into my son’s room with me following closely behind.

I am there just to watch. I don’t have to do any of the lifting, any of the changing, or any of the dressing, but I enjoy his company and how my son reacts to him so I choose to stand and hold the wipes or pull ups.

He brings him down stairs where he feeds him his breakfast while having a chat to my son about my son’s upcoming school day.

My son is nonverbal but this man pays no heed to that and talks to him constantly, waiting for a response and when he gets one he explodes with laughter and more chat.

My other sons stroll downstairs and are greeted with a warm ‘Good Mornin’ to ye lads’.

I can have a hot coffee while listening to the radio.

There is no longer a rush in the mornings in my home; thanks to this very special man.

He leaves an hour later with the usual ‘have a great day everyone and I will see you all later’.

He returns at 3.30 every day. His voice is loud and upbeat as he enters the house, “I’m back!”. He plays, jokes and engages with my eldest son, for two whole hours he is the carer.

I get to spend those two hours with my other sons doing something sometimes as simple as watching a movie.

He’s a remarkable man. A reliable man. A kind man. He is becoming part of our family and we love that.

There are also a group of these people who take my son a few times a month for an overnight stay and these people become mammy and daddy to him for the time that he is there.

I know that when my son is with them, he is safe, happy and being loved on. He adores them, and they adore him.

Another one of these people calls by twice a week for my son.

His chosen career is to support our family through taking our son out and about for ten hours over the month.

He has been part of our family for almost eight years. He’s part of many families. He shows up with an empty cup and a warm hug for all the boys.

I fill his mug while he packs the car and then he’s gone with my son smiling out at me from the backseat.

Last week I met at least twenty of these people all under one roof. They were singing and laughing with not only my son but with other kiddies who also have life limiting conditions.

I wondered how they do it. How do they smile when they know each beautiful child that they care for will pass on?

How do any of these people choose these careers?

I don’t know. That’s the truth.

But without these people to help us, I am not sure how we would cope. I don’t think we would be living.

Each and every one of them have given us a piece of dry land to climb onto while the seas grow rougher and rougher around us.

They don’t do it for the praise, or for the pat on the back and certainly not for the money …they do it because they want to help, care and are not afraid to sit and talk to us about our son and how his future is looking.

Sometimes they spend their time listening to us and assuring us that when the harder times come that they will be there with us and with all our boys.

So to these people that we are lucky to know and have in our lives and in Ethan’s life; thank you all so much for all you do – we don’t say it enough but you guys are absolutely amazing and have the biggest hearts I have ever had the privilege of knowing.

To our family, you guys are the heroes.

Special Needs Parents: How do you do it?

I bet that every single one of you reading this has either said this statement or had it said to you.

It’s an, ‘I don’t know what else to say’ kinda statement isn’t it?

I must admit, I may have said it myself a few times, when I’ve really not understood how I would walk in someone else’s shoes.

Reality is, we all walk in our own boots, we all sometimes need plasters to heal blisters now again, or even need a new pair at times in order to carry on with the struggles that come our way.

Needless to say I’ve chucked a fair few pairs away and started again with a new strut to go with them.

This saying has been said to me a lot lately, which is why I’ve decided to talk about it and give you all a new way of looking at it, and maybe make you think before you say it, and for those who have it said to them, I just hope you can relate and take something from what I’m trying to express.

In life we all reach points where we have to make decisions, we all go through trials and challenges, we all have our ups, our hopes and times to reflect.

A huge decision my husband and I made was to try for a baby back in 2013, so just like millions of other couples we wanted to extend our family.

We knew it was going to be life changing and accepted that whatever the baby needed they would get, and we would go through life a day at a time.

Now, at the time, we didn’t realise how life changing it would be, but who are we to say that our expectation vs our reality was much different to the next set of parents?

What I’m hoping to get across here, is that every single child that enters this world, besides being an utter blessing comes with their own challenges that may determine the way that family live their life.

For us, our reality was a lifetime supply of hospital appointments, therapy, medications and a whole lot of health worry. Our reality was wondering if the next seizure would be life threatening or not.

I could not tell you what the next parents’ reality is, but I know that we all have something in common, and that is that we are parents to a child/children and we all have something to worry about.

We all want the best for them, and get anxious when we feel they are unwell, unhappy or struggling.

In my friendship circle, yes I stand out as the one with a complex child, but I also fit into a crazy bunch of mums trying to do the best by their child.

Each one of us have worries and are pushed to our limits at times as we are tested by the harsh difficulties that we face.

Some of these may be health, education, or behaviour, whatever they are, they are important to that family. We do it because we love and cherish our children.

Now, I’m quick to admit that I need help just like the next family, and I have days that seem too hard to get through, but there is always a gorgeous boy sitting in front of me to kick me up the bum and crack on with it.

So to answer that controversial question…

I do it because I keep open minded and try not to guess the future, Zachariah will lead the way, and Mummy will be there to catch, push, cuddle and praise.

I do it because I chose to be his Mummy and I am not about to give up on that now.

I do it because I love and cherish my son, and he relies on me and his Daddy to guide him through life. I’m pretty sure my friends would have the same answer when they are confronted with this question.

I do it because I wanted to be a Mummy and chose to have my wonderful little boy.

Challenges, worries, grief will always be there for sure, but the key is getting through those and staying on board the parenting/carers train.

So next time you think about asking this question, divert it into words of encouragement and let them know how much of an awesome job they’re doing :).

Lots of love, Rochelle. (My Daily Miracle)

Special Needs Families: What do they see when they look at me?

Do they see a happy and active girl in pigtails, with big pink glasses, confidently striding down the street, with no cares in the world, grasping tightly onto her mother’s hand?

Or do they see a physically handicapped girl, tripping over her own two feet, ‘cerebral palsy’, being held up by her mother’s hand?

What do they see when they look at me?

Do they see an incredibly smart and social little girl, engaging and communicating on all levels, so  hungry for attention and interaction?

Or do they feel sorry for a deaf girl with cochlear implants, who is non-verbal and has obvious communication difficulties, assuming that I lack cognition or awareness?

What do they see when they look at me?

Do they see an inquisitive schoolgirl, eager to learn as she ‘reads’ her tactile and Braille book, excited by the different textures and feelings, and the high contrasts?

Or do they see a mostly blind girl, with her big pink glasses, struggling to make any sense of the book in her hands?

What do they see when they look at me?

Do they see how well I can express my emotions? I can laugh, cry, get angry, get excited, express love and seek reassurance.

Or do they assume that I don’t show any emotions or maybe that I don’t really have feelings the same as other kids do?

What do they see when they look at me?

Do they see a girl being tube-fed by her mother, enjoying the interaction around the table with her family as she sits in her activity chair, and taking small tastes of food by mouth?

Or do they see the limitations of my feeding ability, focused on my obvious dependence on blended food and the syringe and feeding tube extension?

Well, what do they see when they look at me?

I sometimes wonder if people see beyond my outward disabilities… Do they only see a girl who does not walk, cannot hear or see, does not talk, cannot eat… or do they see past my disabilities and look at my beaming smile, do they take time to notice how bright I really am?

What do YOU see when you look at me?