Welcome to the "Club" you didn't apply for.

This is a little removed from my usual tips and hacks but it might just help someone. This is for those just starting their journey.  A few tips and lessons learnt to help you on your way.

There is no right or wrong way to feel

Don't feel you should react in a particular way.  I am my harshest critic. I felt I should instantly know how to cope, instantly feel at ease with Owen's issues and basically have no adjustment time (how delusional of me!).   So when I did not feel that way, I thought I was not meant for this road.   I suffered greatly from depression and anxiety. I was resentful, in denial, thought my life was over and thought I did not have the strength to do it.  Although I do admit there are some mums who just take to it like a duck to water I have found very few.

  
Most (like me) were terrified, felt like they were drowning, felt like the carpet had been pulled out from under them and felt ripped off.  They did not get the baby they "ordered". I know we don't "order" babies and that is a harsh way of putting it but it is an accurate way of putting it. We have dreams for them from way before they are even conceived, expectations of healthiness, expectations of the life they will lead and the life we will lead. We have so many images in our heads it is no wonder when we are presented with something that does not match that, it overwhelms us.  Often we are not even given images to replace the ones we have. 

Love is not always instantaneous.  In the very early days I felt like I could not give Owen the life he deserved nor the unconditional love he deserved. I felt I was not capable of looking after him and that I would never look at him without regret for missing the life I had imagined. I was VERY wrong about ALL of these things and it it took time to learn and feel that. I love him unconditionally and see nothing but beauty when I see him.  I no longer see the path I imagined all those years ago, I see his path and am OK with it.

If you are starting your journey, be gentle on yourself,  don't judge your feelings, feel them, accept them, allow yourself time to grieve, don't look too far ahead just look at the next step you need to take and concentrate on that.  The rest will come.

It's OK to be terrified

As I said above, most mums and dads are terrified. You have imagined a set path, where you can see everything but you have ended up on a unknown path in the dark. You can't see where you are going and you are worried to take a step.  You are worried you will trip and fall over, step on something scary or even find nothing in front of you at all.  Don't worry you will adjust to the dark and be able to see where you are going.  Even better, eventually the sun will come up for you.  I promise, this feeling will pass, it will become easier and less terrifying. 

You are not alone

I felt very alone. Although family and friends were supportive I felt alone as they had never been on the path I was on.  Then I went to a playgroup at a special school, joined some website forums (this was before Facebook), got connected with therapists that could help and guide me.  I suddenly found I was a member of a club, that welcomed me, that welcomed Owen.  A club that didn't care if I was late, tired, cancelled at the last minute, didn't' feel like talking or that I felt like crying.  The club didn't care that Owen vomited or screamed.  They cried with me, offered tea or coffee, offered advice. We supported each other.  So find a playgroup, join some online forums or Facebook groups.  Connect. 

You are not special nor are you chosen

I used to think this.  Special kids are only given to special people who can handle it.  It is something people like to think, as they admire what we do and how we do it. They also don't think they can do it.  I  did not put myself into the special category and still don't, so when faced with this path I panicked as I did not meet my own expectations.  So here are the facts. I love Owen and do my best for him, that is what a parent does, ANY parent. It's just that I had to learn different parenting skills.  It is special but doesn't make me special.

It's important to seek help and set-up networks

Don't try and do it alone.  Get counselling (professionally or otherwise), see your doctor if you aren't coping.  Look into what networks/organisations there are around you that provide advice, therapy, respite etc, and register with them.   Join playgroups for special needs kids, accept help from friends and family.  Look after you.

Never compare

NEVER EVER.  Not only should you not compare your child to Neuro typical kids, you should equally not compare them to other special needs kids.  They are all different and on their own path.  Even in the same "syndromes" the pace of development can be poles apart. Comparing can lead to disappointment and unrealistic expectations and more grief for you. So just don't do it.   

Don't look too far ahead in the early stages

I tried but it just terrified me.  Here are the facts, your child will develop at his or her rate, your job is to help that.  The development or lack there off  that you are imagining may or may not come to pass.  Rules, day programs, job programs, funding etc may look different by the time your child gets to the age to use them, so what is the point of worrying about it now.  It helps to just think of the present and immediate future.  Just think of your next step or two.  Help them with what you can now, don't give up.  The rest will come and you will know when the time is ready to think about it.

It will get "easier"

I promise it will.  I can't promise it will always be easy and you won't experience a challenge or two (or three or four) but I can promise you, you will find ways to cope, it will be less terrifying and you will adjust.  

Whilst you might not feel like it now, you can do this and will want to do this. 

Welcome to the club xx