Monday, 11 March 2013

Progress is Progress...

So very often we try to put our focus on what our kids can do as apposed to what they can't. I am a firm believer that this is an extremely important attitude to take as not to discourage ourselves or them, and also it fosters a very important philosophy about loving people because of their differences, not in spite of them.

When I began this blog, I decided that I would be upfront about what life was really like raising an autistic child because I think we will all benefit more in knowing that others share some of our experiences and emotions. If we all just walk around pretending like we've got it under control and that everything is perfectly fine, then not only will none of us know how to deal with these things, but we will also very likely feel guilty for having any sort of negative emotion at all.

In the spirit of focusing on little man's cans and not his can'ts, most of my posts have been about hope and progress. Sharing things that we have had success with is both reaffirming for me and hopefully inspiring for other parents. Today though, I feel like I need to be forward about all that encompasses my roll.

I'm just going to say it... Raising an autistic child is hard. Harder then I ever thought having children would be and nothing that I expected. I have spent many nights after my little ones are in bed feeling like a complete and total failure. I have found myself against all better judgment and despite my understanding, ready to scream at the top of my lungs and leave while my son hits unbearable decibels in his sixth meltdown of the day. I have even a time or two found myself feeling a bit jealous of the mothers who had "perfect babies who have been sleeping through the night since they were three months old and speaking in sentences by age two."

I am well aware that this sounds pretty bad, and that not everyone will get it, but all parents, and I mean all (Even you June Cleaver) have had moments in which they were not the loving, patient parent they are the majority of the time. My children are well loved and treated beautifully, but so help me, it has taken every bit of self control I have at times not to change my name and book it for the border.

Some days, you just want to be able to get things done, without all the explaining time, and adjustment time, and recovery time. Sometimes you just want your child to put their own bloody clothes on instead of chasing them around the house and trying to shove each limb through with as little cooperation as possible. Sometimes you wish you could go places that are supposed to be fun, and actually have fun!

Lately, we have taken a bit of a step backwards with the progress we've made, hence the frustration. We are having sleep troubles again, all sorts of coping difficulties, unwillingness to venture outside of safe zones, a substantial withdrawal in affection, and the eruption of a temper that can only be described as volcanic. It's hard. Hard to see your baby, whom you only want happiness for, struggle and rage against everything, and it's hard to deal with for selfish reasons as well.

As parents, we lose our identities almost. We are parents. Parents of typical kids, parents of autistic kids, coupled parents, single parents, working parents, stay at home parents. We get so caught up in our roles that we forget that we were us first. Underneath Max's mom is me, Jenna. Once I remembered that, I made peace with the less than expected responses happening inside of me to the frustrations of my life. It's not like "oh hey, so you're going to have a family so it's time to be 100% together all the time and never ever allow yourself the freedom of falling apart." It's more like "Congratulations, you're going to be a parent, so all the stuff you've been trying to sort out about yourself? Put it on the back burner and try to get to it in between making sure this other human is being cared for. P.S shit's gonna get rough sometimes."

I am aware that the recent relapse in little man's behaviour is merely a phase and is to be expected. Two steps forward one step back can be rough, but it is progress none the less. Progress should always be seen as positive no matter how slow, and should be celebrated as such. I am proud of my guy for doing so well on this very long journey we have set upon together. I am also tired, and that's alright. Allow yourselves to feel human. Forgive yourselves for being week at times, because we show more strength and determination in the names of our children then we would ever be able to muster for ourselves. Make sure that your children know when they go off to bed, that they are loved and that you are proud of them, and then lock yourself in the bathroom after your spouse gets home (or bestie, or mom, or whoever) with a very large glass of wine and a hot bath  and take time for you. Cry if you feel you need to. Feel angry, whatever it is you have been putting on the back burner, let it out. Deal with it, and be a better parent for it.

I love my autistic child and would not change or trade him for the world. He is perfect to me. That does not change just because I'm feeling temporarily overwhelmed. It is ok to grab the bail bucket and start tossing back out the gallons of water that massive waves have brought in as long as you refuse to sink. We do what we must, because we are human; Flaws and all.