Being a special needs parent

I just want to take a moment and share about being a special needs parent. Even though my daughter has special needs, I also have special needs which can be hard to understand, fathom or respect by others. I have so much in common with my Abbey, it is really astounding how our lives intertwine on this level.

I am forever inspired by my friends with special needs children who I have known for a long time, or only via Facebook contact. Their small updates about their children or their dreams for the next 3 minutes keep me up and not lost. Some of us use Facebook as a means of having human contact and some of us are just not comfortable with this means of sharing (thats me).

But what I do know as a special needs parents is the following, and I hope those who want to be involved but are unsure how to have some inspiration can begin to contact those:

– It takes alot of time and energy to raise a family, of any size. Adding in a child with special requirements, whether a minor allergy or a constant life threatening illness, is exhausting for special needs parents.

– We dont want sympathy, but empathy. A moment of walking in our shoes by someone else, so we dont feel so alone. Whether its as simple as understanding the frustrations of not getting the dishes done for 3 days, washing that needs to be folded or something more complex. As special needs parents, we struggle to get done the simple household chores, as we are caring for another person full time. We dont expect everyone to get it, just an understanding of some aspect of our life.

– We dont have the same freedoms of time. We all know what it is like to be sick or caring for someone who is sick. But this is usually short lived. Special Needs Parents do this full time.

– Our time and energy levels are low, but high demands are placed on both. We struggle to just get done the day to day stuff, adding in entertaining for pleasure, just does not compute. Its not first in our minds, the needs of our family is. So we just need a little nudge and a smiling face to remind us that there is an outside world. We need someone else to plan our entertaining for pleasure.

– We dont always remember to ask for help. Sometimes we dont want to, as we are just so overwhelmed by it all, we are just trying to get back up. In this case, a small gesture can be the thing that just makes a Special Needs Parent feel Special.

So I am not writing this to have a bitch or a whinge. I love my life, my Abbey, my family. But sometimes being a Special Needs Parent is all I have time for. I love you all dearly. I love it when I get an email from a friend who I have not heard from for so long, that it pops up and I get so excited. Someone in far north QLD is thinking of me. When a friend takes an hour to have breakfast with me, its heaven, it really is, especially in Melbourne. When a dear friend folds my washing, its like a couple of bricks have been lifted off my shoulders. When one of my boys brings in a weed flower with a huge smile, saying this is for you mum, oh I just melt.

As school has gone back, I know many other Special Needs Parents are probably feeling as I do. This is to say, your not alone. And heres hoping if you can do a tiny little thing for your Special Needs Parent Friend, please do. We do remember and we do love it. And we also know that any sort of relationship or friendship with us takes a bit more work. But we are as committed as you. We do want to give more, we really do. But our special needs child takes most of it, which leaves us with less to give out, either time or energy. Certainly NOT interest or love for you. These are never ending.

I hope that gives a bit of insight to our world. Our small world of 6. Our dynamic loving world.

Palliative – heavy shadows

The addition of the word, palliative, to our day to day vocabulary has shifted our world. There are new feelings … I thought it was not possible to experience such depth or range of feeling associated with one word, especially at this stage of our journey with Abbey.

The feelings are a heavy shadow that are hard to express into words. There is no way to express these feelings that makes sense. I dont have the desire to cry, be angry, scream or cower.

The word has formally put a finality to this journey with Abbey. But there is no final date and no idea what comes next. All the word does, is tell us we are on the final path.

I have tried using it in day to day conversation to become use to it. I have tried writing about it, but for the past 2 weeks have been stumped as to what to write.

In writing this update there are overwhelming feelings of sadness and despair, but these are equally shared with feelings of vitality, stubbornness and abundant love for the life this girl deserves.

If anything, the word, has firmed my desire not to waste time on trivial stuff, irritations or situations. These are in abundance in day to day life, from someone not understanding your position and it causing angst, to the delivery truck being late or even tackling the NDIS process. None of this is within my control. Our next stage with Abbey, is out of my control.

Where to now? I fight harder for what we need, we want and would love to achieve. I focus on moments of connection and love and not hide. Hiding is so much easier though.

I hope that friends and family will understand if Im late in replying, not remembering the important days or getting caught up in the whirlwind that is Abbey and forgetting a coffee date. I hope they know that when they reach out or check in, that it pulls me out of the little sad hole that can sometimes begin.

Its getting harder to reach out to the world on this new path. It takes more energy and emotion. It also takes more time as we dont know what is next, so there is no preparation.

The word has also given me a new sense of patience with the world. Patience with myself, patience for others in hard situations and patience for those grieving for a loss.

Its written. I dont know how to end this. Nothing has changed in writing it, but its out there now. Maybe I can move onto the next thing? Whatever that is!

Photo: We have altered our evening schedule to all have dinner together as often as possible. Abbey tends to lay down when at the table, as its just the right height.

We Have Always Known

James (Abbey’s Dad) has beautifully put into words where we are at currently regarding Abbeys care and needs.

“It seems some of my recent posts mentioning palliative care & end of life planning for our daughter, Abbey, has caught a lot of my friends by surprise and alarm. Let me clarify.

We (Tennille and I) have known since 2010, when we first discovered the cause of Abbey’s health and developmental issues, that the average life expectancy of girls with similar conditions was 12 years. As more children and adults around the world have been identified with similar genetic mutations, the average life expectancy is up to about 15. This isn’t a maximum, just the average.

In the preceding decade, Abbey’s seizures and other care requirements have meant that ordinary respite care was denied to us. She required a registered nurse, at our own expense. We have qualified for some bits here and there, and have been blessed with amazing carers over the years who become more and more comfortable with Abbey, and take on more of a respite role, but always at our own expense and risk.

On the flip side, with so little insight into her condition – it being a unique kind of mutation and not conforming to recognised syndromes – Abbey didn’t qualify for palliative care support. This was a significant issue, as we *knew* how quickly her condition could complicate even a minor illness to become a life-threatening situation, or the seizures would escalate rapidly, or a dozen other ways she may leave us at any time.

With the change to a new pediatrician about a year ago, we now have an incredible Professor who specialises in genetic conditions of a similar complexity as Abbey. He has the knowledge and foresight to have referred us to the Lady Cilento Childrens’ Hospital Pediatric Palliative Care Unit (PPCU). Here’s how that’s significant:

– We have 24/7 access to a team of doctors and nurses who are familiar with Abbey and can provide advice and support either directly to us as parents, or to Ambulance or Emergency Dept staff. This means we aren’t always required to explain the whole history to multiple people each and every time we go to hospital.

– When I am away from home and Tennille needs a second opinion as to how to manage a situation, she can call the PPCU Team and get the assistance she needs.

– We have been able to formalise end-of-life planning, stating our wishes for Abbey should her health degrade significantly. This removes confusion – should we not be present and she requires emergency care, we are better placed to avoid something we don’t want but weren’t present to communicate.

– We have a team of people we can contact if she does pass away at home who can coordinate the necessary processes such as paramedics, police and coroner, without us having to deal with it in our time of grief, explaining her situation and the like.

We have also been referred to Hummingbird House. This incredible non-profit is a short-stay facility for families in palliative care. For us, we can spend a few nights with Abbey fully cared for by medical professionals, whilst we are staying downstairs in what is essentially an apartment, free to come and go as we please. This freedom to have overnight and daytime care for Abbey has finally opened up the possibility of a family holiday for us (albeit without Abbey). Until this referral to Hummingbird, such a thing was simply impossible.

So in summary, Abbey is not markedly worse. Nothing has changed in her overall diagnosis or condition. We are seeing an escalation of her seizures, and they are alarming, but it remains to be seen if this is simply another cyclical phase or a more permanent change. The end of life planning stuff is actually a positive thing. We now actually have a support framework and network that we have been in need of for years.

Please don’t be sad. Not knowing what to say is entirely understandable. You needn’t even say a word. We are completely at peace with the process, and look forward to many more years of fun and joy watching our beautiful daughter develop, and our incredible sons become even more incredible young men, all three becoming big brothers to their extra-special big sister. Life is good.”

Palliative.

Its a word that has always been in the background and followed us around from day one. Its a word that we wish not to hear.

Palliative.

The word popped up at a Paediatrician appointment last week for Abbey. Her doctors have started talking about the process.

Abbeys doctors’ want to start the paperwork for palliative care. Abbey is not terminal. It just does not make sense, but we know her life will be shorter. Her doctors know this. We know this.

We won’t look into the future often. We know it will change dramatically one day. I dont want to start the process.

But… we must.

For a week I’ve been going through another kind of grief. A sadness that this step makes it official that my girl won’t be with me forever. That I will outlive her. Paperwork always makes things official. I like thinking I can spend all my time curled up in bed with her cuddling.

Why palliative care?

Abbey is eligible for this service as her life is shorter and its provided for children who will not make it to adulthood.

Starting this process will help in the following ways:
– as Abbey gets older, there is less chance that we will loose services from the child to the adult sector at 16 years. Its just another foothold in the bureaucratic system that is disability services.
– if she does pass away at home, then it will mean the police will not need to be involved, making this event a bit easier on all concerned.
– we can hook into counselling and services that can assist us with this transition.

This has brought into perspective where we are heading next with our girl. It all makes sense, but honestly, if feels icky and makes me sad.

Talking about it does not help. Writing about it does not help. I dont think I want to get use to this next stage.

All we can do, is carry on. Life carries on. Abbey needs cuddles and love. This we can provide in abundance.

Why cleaning a toilet assists in achieving your greatness.

Dan asked today why he and his brothers have to do so many jobs around the house.

Previously I would have felt so guilty about it and answered meekly with apologies for the situation.

Today I see how I have grown and how he is maturing.

The answer…because Mum and Dad are caring a lot for Abbey. But we want the best for you and your brothers, like attending Scouts, music and travelling. To do that, we need help.

It’s not a lesson in we must all do jobs that we dislike.

It’s a lesson in helping one another to achieve our greatness. Even if it means cleaning a toilet.

His response was fabulous.

He listened, I saw the brain cogs turning over, then acceptance. And the conversation turned to burping jokes.

Photos: we are a team.

NDIS meeting and the best toastie in Brisbane

I am very against taking pictures of food some one is eating, just to have a discussion about it. Does not make sense to me.

So I took a picture of my “getting ready for another f&@king NDIS preparation” meeting meal. A coffee and a toastie to mentally prepare.

This is my third such meeting to prepare for Abbeys NDIS interview, that is due to happen by July 2018. Total hours so far are about 18. I still have at least 3 more meetings to go. I will be very well prepared, and Abbey for the first time in her life will be well funded and well supported.

Today’s meeting was with her physios to plan for and organise quotes for equipment, home modifications and therapy appointments. My goal is to take a quote of everything my girl will need to the NDIS planning meeting.

The meeting was a heap of fun, the ladies are awesome and very knowledgable. They also push me to consider other possibilities for Abbey. How awesome is that?

I must give credit to The Eva St Privateer for helping me zone in, ready for meeting. Their toasties and coffee are the best in town!

Peace as we prepare for palliative

Peace.

We constantly talk about peace. The Dalai Lama talks about peace. It’s such a simple topic. It’s so hard to achieve. There is an element of coming to peace with peace. Letting go of all those things that gave meaning to our emotions and reactions.

At the moment there is a focus on providing peace for Abbey in the ending moments. This is wonderful, but I’m wondering; what about peace now? Peace tomorrow? Peace for everyone else?

Abbey has brought together, of her own accord, an amazing group of people. She shares her love willingly with those who share theirs. She demands focus and attention from those around her, but peaceful attention. I know we all strive to do that, no matter where we are currently. She makes us stop the chatter in our head, forget the people annoying us for a moment and to reconsider those things we cannot control in our lives.

Abbey has the freedom and ability to do it instantly. She does not even know she can do it, so why can’t I?

I’m always working towards simplicity and reducing the chaos. Now it’s about finding peace with the chaos and the demands that are placed upon us that I cannot control. Working towards calmness in my own reactions. Gradually accepting that I cannot provide for the needs of all the others, especially emotionally.

It’s not about cutting myself off. It’s not about ignoring. It’s not even about saying no. It’s about a genuine connection in each moment. I will give of myself fully in every situation I can. It’s about choosing to be calm, listening to self and responding in a peaceful way. (Maybe sometimes its a forceful way with a lot of peace attached.)

Abbey is the calm in the centre of this storm. I’m choosing to join her.

Update Marijuana Trials

Abbey has not been very photographic this week. So the boys have stepped in.

With our third increase in the dose of oil we are starting to see changes.

There is a lessening of seizures. We are seeing less myoclonic jerks and vacant seizures. The big seizures are still loud and strong, but less.

It’s good news but we are still cautiously optimistic. We have been down the path twice before, with results going backwards for Abbey.

There are still 2 dose increases to go.

Abbey is showing an increase in drowsiness, this is clear now. A phone call to neurology department to discuss next steps.