Sunday, 24 March 2013

Here's my advice..for what its worth!

I wasn't sure I wanted to write the overly patronising "letter to new mothers of special needs kid" thing but as I contemplated what my letter would entail I thought I'd got as much right as anyone else to force my opinions of what their journey will consist of so I thought I'd give it a go!

Your journey will be an emotional one. You are strong enough to cope but you will break down at times. These are the times you need to grab a bar of chocolate, maybe some wine, maybe a copy of Moulin Rouge and ball your eyes it...Don't feel bad. Don't feel guilty. Life is a bitch, she is! This isn't fair. Yes, there are worse parents than you that this should have happened to. No, you didn't deserve this and neither did your kids. It's shit. It is, there's no other way to explain it. Your life will change dramatically from this point on and it won't be anything like you envisioned it. so go on, drink the whole bottle and get plastered. I binged ate on chocolate for the first year of my journey (and yes, i still do!) so go ahead and feel really sorry for you and your family because you are allowed too.

Your life won't be the same, and it won't be what you had planned either so mourn the loss of that. And mourn the loss of the kids you thought you were going to have. DON'T FEEL BAD ABOUT DOING THAT! This does not mean you do not love your children dearly. This simply means you have lost something you already thought you had. But life is never constant. Life does change. And even without the drama of autism life may never have been the way you planned it. Don't mistake a changed life for a ruined life. You can and will make new dreams but they will be harder to planned for because you won't be able to second guess a thing. But take time to create new dreams. Do it on a week by week basis and never look any further than the next season. It will take years to replace something you have created for (in my case) 34 years. Your new dreams won't come over night, but they will come.

As i said above, don't second guess a thing. You can't. I looked at my children a year ago and I writ them off. I did. I admit it now. I assumed a lack of ability. I assumed their future and consequently mine were filled with doom and gloom. Now I try not to do that. I'm a realist, yes, so I admit when something doesn't seem a possibility but i don't dare to assume what my kids can manage on a day to day basis. They will make a ass out of you! I believed Cody would never communicate with us. He can not offer a functional sentence but he can communicate just fine in his own way. He can now make choices - a simple task that would have melted his brain 6 months ago. Jesse is slowly moving out of her "little world" to understand things around her better. I was in despair even 6 weeks ago yet alone 6 months ago but you can not second guess a thing and you will only destroy yourself trying to do that. Just focus on the NOW, the RIGHT NOW. Not dinner time, or bedtime, or the following morning because its as likely to be the thing you never imagined for that throws the plans into chaos!

As you are focusing on the NOW notice every little thing your child does. Its very easy to be overwhelmed by what your kid can't do. The world is cruel like that. It will give you plenty of opportunity for comparison and most aren't favourable. This pain will stop. The chance to view your kid alongside others never stops happening and you never stop comparing but you do stop feeling like you've been punched in the gut on a daily basis. This only happens when you start being grateful for a special gift your children give to you. The gift of appreciation. You will start to appreciate every little thing they do. Even if its not positive! When Cody told us the toilet was "for piss" we were over the moon! His first answer to a question we posed him. We can take in so much more when we think its not possible. This weekend we walked along the street holding Cody's hand. I was crying. To be walking with my 4 year old instead of pushing him in a pram that's no longer suitable. When Jesse jumped out of her pram to walk on the beach...amazing! When she vijazzled herself with stickers..incredible, what fine motor skills!!! Notice everything and celebrate them. Try to only use positives and ignore the will feel better for it I promise!

Accept. But in accepting also accept that some people won't be accepting! Some people just won't get "it". They won't. Don't waste energy or valuable time on trying to convince them of what your life really is like. They just won't get it and in the end they will walk away...they always do. I'm sorry, you will lose relationships but by god you will gain far better ones. With people who do get it. And this is fantastic...suck it up. A word of warning though. Just because they have special needs kids doesn't mean they have anything else in common with you so don't throw your friendship at the wrong people out of desperation to be understood. Don't surround yourself with the negatives, the poor me, the drainers or the one up man ship. You are still you. So be true to that.

Talking of prepared to see a better version of you. A more patience, stronger and more empathetic you. Be prepared for changes in yourself and embrace those. Don't be scared to make this your life. Throw everything you have at it. Get the very best, not just for your kids but for yourself too. A happy mommy equals happy children. Know one is going to "give" you anything. You must go and get it. With or without help it's your duty, responsibility and quest to go and get the things your children need. Money, support, equipment, respect. These are necessaries in this journey but don't sit around waiting for them. If you don't like something, change it. If you need something, get it. And don't take no for an answer. They will not give it up easily so you must meet them blow by blow. Do not walk away until the match is well and truly over. There are parents out there who have made remarkable changes to our community simply because they didn't give up or give in at the first hurdle. Nothing is "too much like hard work" where your children are involved. Also...Facebook/twitter is great for venting but it will not solve anything! Only you can do that!

Whatever people say, this is not your fault. Follow the diets, the pecs, the advise but there is nothing can change what has happened. And you don't need to find a solution because you didn't cause the problem. People don't think, so grow a very thick skin or the words will wound you constantly. It's OK to be upset but its also OK to tell the they are wrong. It's also OK to tell them to feck off every now and again!

Where your kids are concerned...pick your battles. Don't fight them unnecessarily as you will only make it worse for yourself! Don't fight the stims, the rocking, the obsessions..they need them as much as you need that glass of wine at the end of the night. See the world through autism tinted glasses...consider the senses, the stimulation, the feedback and the view of the world your child gets. This will mean you miss out on the "norm", it's sad but true. Maybe events, celebrations, simple shopping trips even. Somethings just won't be worth the hassle! The best thing you can do is to become slightly autistic yourself! It can be very liberating and it's certainly enlightening. When you understand their world, you understand them.

Finally....don't take anyone's advise as gospel! Even blogging autistic mothers don't get it right all the time (or even most of the time!) because my child, their child, that child is not your child. I'm not an expert, even where my own kids are concerned but everyday I learn something off someone about autism. Be that a professional, a teacher, a parent or a well meaning stranger. The trick is to take it all in, digest it, apply it to your life and if it's not a good fit discard it and keep on learning.

Someone once told me "it does get easier". I didn't believe them at the time but I think any of these similar sayings are true. This too shall pass. Tomorrow is another day. And take it one step at a time. Because as you begin to understand and accept then over time (not over night) life begins to start a fresh. And it's a hard life, it's a challenging life but it's a rewarding life and it can, without doubt, be a good life if you let it.



Nannyviv said...

Think this should be your new motto "Don't mistake a changed life for a ruined life." Your words. x

Post a Comment