Face the fear and do it anyway.
Sometimes I wish I could go back in time to when I was young; somehow, back then things always seemed to turn out alright.
I remember being small and afraid of the dark, afraid of monsters under my bed, or unknown noises in the dark. Back then all it took was for my dad to leave the hall light on for me at night or my Mum to check under my bed, to give me the all clear so I knew I was safe. I remember that feeling of relief that everything was going to be alright. No matter what the problem was if Mum or Dad said it would be okay, then I knew it would be.
I sometimes find myself wishing to be that young again; when that was all it took for me to know things would turn out alright in the end somehow.
Over the last few months I have found myself struggling with the weight of the responsibility of what now rests on my shoulders, the reality of having two little boys who are unable to speak, who have Autism and SPD, Developmental Delay and Intellectual Disability, who rely solely on me to survive now and in the future.
I think every parent feels that way from time to time but I feel it more acutely with Conor and Jack then I do with Hailey, as they rely on me so completely all of the time, it can be so breathtakingly overwhelming.
Trying to be the best mother I can be for them, trying to be the best “Speech Therapist, Occupational Therapist, ABA Therapist and Physio Therapist” for them; when there is little to no professional “services” provided anymore for them thanks to Government-led mismanagement and funding cuts, trying to meet all their needs, day and night.
Staying awake most nights while I watch Jack and Conor oblivious to the hour; play happily beside me as I long to go back to bed. Watching them struggle, watching them try to communicate, trying to calm them down when they become so overwhelmed they physically hurt themselves or one and other.
Watching how people who don’t know they are the most amazing little boys who have already overcome so much, stare at them as if they belong in a Zoo when they go out publicly, listen to people say unspeakable things about them, trying to always have the courage and the strength to speak up for them when sometimes all you want to do is cry your heart out at the harshness of the world and the reality you and your little boys experience in it.
It all takes it toll and sometimes you need to take a step back if you can.
I purposely haven’t blogged for a while here on The Little Puddins Blog as sometimes when you write something down it makes it concrete, more unbearable.
When a thought goes through my mind or when I see something the boys do that breaks my heart a little more; I can distract myself, I can forget, just as quickly as it has happened because that is how I cope and I know that is how many of my friends who have children with special needs cope. You keep yourself busy, you distract yourself- it’s not that you can’t see the reality staring you back in the face but it is more that you can cope if you shield yourself for a little while more.
Somehow when I write it down; it remains, you cannot distract yourself, when it is right in front of you, it chips away at what is left of your wounded heart.
My heart often shatters into tiny pieces when I see Conor talk to himself in his own language – more then ever, just then; I wish we could understand him and talk to him, or when I see Jack obsessively line objects up to the point he becomes so upset he cries his little heart out, physically hurting himself in retaliation for not lining up his toys properly- I wish I could make him see it doesn’t matter if they don’t line up.
At those moments I can barely cope with that very real reality that this is how it is always going to be, my boys lost in their own worlds behind an invisible wall I can’t break through to help them.
In those very moments I cling to the hope that things will get better for my boys and at that very same time I am more aware then ever; the weight of responsibility that rests on my shoulders now and forever more.
It so overwhelming; it quiet literally takes my breath, to the point I fight back my next breath as I know I will burst into tears and I don’t quiet know when I would stop crying if I were to start.x
When you raise children with special needs, nobody can give you that magic wand you need so, so desperately; that will break down those invisible walls to help you reach them, there is no one that will tell you it will all be alright ever again.
I wish now my Mum or Dad still had the ability to tell me it would all be okay, that things would get easier, that Conor and Jack would speak, that the Government would finally show in THEIR actions that they respect children and adults with Special Needs, that my boys and children/adults just like them would finally be accepted and supported just as they are, not ridiculed, abused, sidelined and forgotten.
My biggest fear for my boys is that I will not be enough, I will not be able to do enough for them, not be able to speak up for them when it matters most, not know all there is to know to help.x It is a fear that haunts my last waking thoughts each night before I eventually get to sleep, that feeling I am letting my boys down, that I should be more for them than I am physically able to be right now.
Therein lies the heart of the Special Need’s Parent; face your deepest fear and do it anyway.
Keep going, find the courage from the inner most parts of your soul, keep doing the best you can and know that is all you can do.
I spoke to a Mum friend very recently about Conor’s latest diagnosis of now also having an Intellectual Disability, I quietly wished to myself as I told her that she would say it would all be alright, that she would make it so, but the reality is that she nor I are invincible to reality, you can only do your best for your child.
You are only human. My friend told me the best thing she could of in that very moment my heart broke open, she told me she loved me and she was there for me and would always be.
There was no magic wand this time, to vanish my fears about the future for Conor and for us as family.
Yet knowing I have my husband, our children and our close friends/family around me keeps me going.
If you are a parent of child with Special Needs, know that you are not alone, we all feel as you do now.
There is not one of us, who has not had a moment(s) of sadness, weakness, lost our way.
You can and you will get back up tomorrow to do the best you can, facing all your fears head on. You are doing the best you can right now and that is more than enough.
If you need a time out from Therapies take it, regroup, recoup but keep going, don’t give up.
I have been where you are right now, I am sure I will be back here again many times over the course of my boy’s lives but I also know that after the dark days the Sun will dawn again and I will get back up.
Do as my friend told me along time ago when Conor was first diagnosed as having Special Needs- Face the fear and do it anyway. Keep going.
If you are a parent of child with Special Needs; find your way to the great many online support groups for parents of children with additional needs who are some of the most courageous and friendly people you could ever ask to meet. You can find links to some of the many groups here in my recent post on Facebook Special Needs Support Groups.x
As always thank you all ever so much for your support for helping to raise Awareness on behalf of families of children with Special Needs in Ireland today by sharing posts.x If you would like to find out what we get up to every day – you can find us over on our Facebook Page, which you can find here.xx