From both sides of the fence... I'm Angry

I woke up this morning feeling like two of the Seven Dwarfs... a little bit Dopey due to the confusion as to why our Government has let the most vulnerable in our society down, but more Angry (I'm using creative licence here... Angry/Grumpy right?) at the state of affairs that was highlighted in Primetime Investigates last night. For those who haven't seen the program, watch it here and be prepared to cry and get angry too. If there was a dwarf called "Lucky" I would consider myself that one too.

I'm one of the lucky ones, my children don't have the extensive care needs that others I have met and know over the last few years have. I'm lucky that my little girl has progressed and will go to mainstream this September. I'm lucky that I have good friends and family that have supported me along this journey. I feel sick to the stomach that I've bemoaned my lot when seeing what others have to deal with on a daily basis due to the chronic neglect from our powers that be. I'm lucky and very thankful that I've been equipped and able to provide my child with services that were never forthcoming. Others are not so fortunate.

I recently contacted my Autism Liaison Nurse for help. I haven't pushed for assistance up to now as was fobbed off with the "cutbacks" line but being a single parent and having to go into hospital for a week for a hysterectomy, I felt it wasn't a want help situation but a need help one. The line I was given was that to give me help, others that need it more would suffer as they'd have their hours cut as there was nothing in the budget left. I was angry and wrote a letter to the ALN and her superiors asking for a response in writing. That was over two weeks ago and guess what... no response. After watching the program last night, it made me cry that its people like this that they are suggesting taking hours from.

I provide home support myself as work for the HSE (Health Service Executive) and although I've given them ample notice of the three months I need to take off after the operation, they will not be replacing me while I'm off recovering, the family I work with will lose the hours I provide until I return in September. This disgusts, worries and upsets me and has left me feeling that I personally have let them down. I know many carers and health care attendants that harbour this feeling of frustration and upset at letting their clients down when in fact its the pen pushers and management of our health services that should be hanging their heads in shame, not us. Its impossible not to feel responsible though when you see the family you work with run themselves ragged caring 24 hours a day for their children, with minimal support that they have had to beg and fight for. Who is going to care for the carer when they have physically and emotionally burnt out?

Guidelines were passed down recently to all HCAs working with children denoting the new regulations... For years we have not been allowed to drive the children we work with, we are not allowed to feed them if they're peg fed (highly unworkable as if the parent is in another county at hospital with another of the children what do you do? Let them starve to make sure the HSE isn't legally responsible? eh no...) The newest regulation is that any HCA working with a minor cannot be left alone with them and its up to the parent to ensure that another adult is present at all times with the carer. It defeats the purpose of respite and support if the parent has to remain while you work. If there was a family member or other adult that could be present, there wouldn't be the need for the HCA there... Is this what the pen pushers are aiming for? If there is a non HSE adult available to be there the next question for the parent will by why do they need support if they have someone who can come in? Can hear the axe swinging as I type this...

Between cutbacks in community care and our health service, and caps on resource hours and Special Needs Assistants (SNA) in schools, what future are our children facing. Can our new Government do the math and add up what its going to cost down the line by hacking away at the supports and services now? I really hope so.

Grieving? But no-one died?

I recently did studies on the grief process and the different stages involved as part of my course and got to thinking how applicable this process is when you get a diagnosis of autism in the family. Although its not a death that you're dealing with, you still go through the stages as the future and plans you had have changed for you and your child. There are five stages in this process, Denial, Anger, Bargaining, Depression and Acceptance. If you are lucky like me, you get to the acceptance part in a reasonable time limit but you do still find yourself dipping in and out of the other stages on occasion...

Denial

Oh how well I remember this stage... the one where it was easier to bury my head in the sand in the hope that I was wrong. Sure she's young, she might grow out of it. I'm wrong, there isn't a problem, its all in my head. You stay here for a while in the hope that it will go away, the signs and flags are waving but you choose to ignore them for a while until the moment that the "penny drops" and your world starts crashing in on you!

Anger

Why my child. This happens to other people! When did I become one of them?!? This is so unfair that my beautiful little girl has to deal with these challenges. You become angry and frustrated that it happened to you and your family instead of Joe Bloggs down the road. Then it hits you that you always pitied the "other people" and get angry that you don't want to be patronised or pitied although you yourself have been guilty of the very same actions in the past. You get overwhelmed with the why me's until the answer hits you.... Why NOT me? This was something my mother taught me when she became ill and I wanted to know why she wasn't angry that she'd been dealt a duff hand although she'd lived a healthy and clean life. It was when she answered "why not me?" that I realised the wonderful lesson she was teaching me. Things can't always happen to "other people"...

Bargaining

We start looking for cures, for answers. If I do XYZ it will "fix" my child. We look for the magic bullet that will restore all our hopes and dreams. We hear what we have to do to help our child to improve their communication, their quality of life and we do anything possible to do it. ABA, OT, SALT, Social Stories, Schedules, diet, supplements etc. How many autie parents do we hear state that they'd sell their houses and bankrupt themselves in the pursuit of the latest therapy available. Unfortunately there are sharks out there that take advantage of parents at this stage promising that the latest "batshit therapy" is the "cure"... Swimming with dolphins is something that whilst a wonderful experience, it's not going to miraculously start your child talking in full sentences.

Depression

Hanging upside down for 3 hours a day, drinking the dew from buttercups hasn't fixed the problem. You realise that its going to be a long slog and damn hard work. Your life becomes a ritual of appointments, reports, letters and fighting for services for your child that will work. Its easy to lose sight of your own needs and let them slide. Unfortunately, getting run down and tired has its own pitfalls. One of these is the "Black Dog" of depression. You want to retreat into your cave and hide for a while until someone who cares for you and supports you drags you back out. Don't be afraid to talk to your GP. Sometimes we all need a bit of help in the shape of a little round pill, its nothing to be ashamed of. While medicinal help is good to deal with your depression short term, its getting a support network established and in place whether a local group or an online group that's vital. Having others who understand and "get it" will help drag you from the cave that which seems attractive but is so debilitating in the long run. Ask for help...

Acceptance

Ok, so life isn't going to be the same as you thought it was going to be. Let go of the old dreams and create new realistic ones. Whats important is not your dreams but your childs dreams. There are plenty of successful, entrepreneurial people out there living life with autism. Many many autists go to college, have successful careers, get married and have children of their own. Don't look too far into the future as it's impossible to tell right now what capabilities and strengths your child will have 20 years into the future! Embrace and enjoy their current strengths and capabilities and stop looking at what they can't do... look at what they can. Acceptance is the greatest gift you can give your child. Different doesn't mean wrong, just not the same. Don't let anyone make you feel that way.

I've found over the past two years that as Munchkin has moved about on the spectrum (and they do, you're not stuck at the same stage always as the day you get your diagnosis!) I have moved about between the different stages of grief. Acceptance is great when you get there, but you will have days when new challenges arise that you'll slip back a few stages or dwell in bargaining or depression a little while. Thing is to keep moving back towards acceptance and getting on with your lives. I know its easy for me to say this as Munchkin has made such amazing progress but that in itself can put you back to the denial stage until autism shows its face again and you need to pull yourself through the different stages. I guess they don't call it a rollercoaster of emotion for nothing eh?