The letter I wish I had read when my children were diagnosed with Autism

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Grieving Autism Accepting Autism

I was asked recently if I am worried BabyR will be Autistic. The question stumped me for a minute. I felt like I was expected to say yes. I wanted to say no. In reality my answer would have to be "it depends".

When MissG was diagnosed I grieved. I sought a diagnosis for MissG because of problems she was having. Problems with communicating and in social situations. Problems due to sensory overload. Problems caused by my expectations of how she should behave.

The reality is my grief was based on my own false expectations. On what I thought society wanted from me and my child. On what I thought I was losing, based on what media and health professionals told me about Autism.

But I now realise that I didn't know anything about Autism. About its creativity. Its persistence. Its resilience. Its beauty.

I am not worried that my child may never speak out loud. I am not worried that he might have some challenging behaviours. I am not worried that he may have difficulty processing sensory information. We have 2 Autistic children already and we know how to support them. What we don't know yet, we will learn if and when we need to. The fact is that parenting any child, Autistic or not, presents its own set of challenges and requires learning new skills and ways of thinking. I am not worried about facing those challenges.

I am only worried that if he is Autistic he will face bullying, discrimination and stigma.... that people will not accept him for who he is.  That he could grow up knowing that in some peoples eyes he will always be less.... broken.... inferior.

But not to me. To me he will always be just fine as he is. His neurology does not make any difference to me. I love him. I will not be disappointed if he is Autistic. Sure, it would mean another intense parenting journey. Sure, it would mean more work finding the right supports for him. Sure, it would mean more learning. But why would that be a problem? He is my son. I would do anything for him. Just as I would for any of my children. Just as you would for yours.

I am not the only parent of Autistic children who feels this way.

"We cannot afford for the focus of Autism be about parental grief.   Our anger and our sadness and our grief need to be directed at the targets which are worthy of it.  Those targets should be the ways that Autistic people are disabled by their environments.  And we need to attack those targets with ferocity.  To disable the environments which keep Autistic people from thriving."          

from love explosions

"When I try to imagine how my child feels about life, I take my childhood and try to imagine my life minus those experiences. But that's a fallacy. Anytime I try to subtract my experiences, I will feel a sense of loss. That same sadness happens when I imagine what I think is a "normal" childhood, an ideal childhood, that comes with a list of all the experiences a child needs for a great childhood. Karate, Valentines, kindergarten, music lessons, ballet, team sports, schoolmates, formal dances, first car, spring break, college visits. Any missed experience means that I have to cross that item off his list. A missed experience means a less-than- ideal childhood. Always. For any child. It's a flawed paradigm.

This paradigm is the same one that causes us pain when we think certain children with certain qualities are "Normal" and any difference is "Not Normal."  It can only set us and an entire group of children up for isolation.

Children with a disability do not have a life minus. They have a life period. It's their life. It's not some other child's life, the parent's life, or their peers' life. It's their life.

A complete childhood has nothing to do with specific experiences. A complete childhood does have certain qualities: connectedness, optimism, playfulness, a passion for things that interest them, a feeling of proficiency at things they want to do, and a feeling of being loved wholeheartedly for who they are right now.  That list is the one that matters."  

from Mama Be Good

Autistic adults have spoken out about grieving Autism too.

"You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you."

from 'Don't Mourn for Us' an article by Jim Sinclair 

Look at this picture. How could anyone honestly ask me if I am worried this baby will be Autistic like his older brother? Look at them! How could I be worried when my Autistic son is a strong, intelligent, persistent, brave, tenacious, caring, funny, generous and thoughtful young man who has big dreams and expectations for his life?

Why would I worry about having 2 sons like that?

The day I told her she is Autistic

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Just another thing to add to the rest

I mentioned on the This is not what I signed up for Facebook page a week or so ago that we were having a difficult week. It's turned into a difficult month.

On top of the usual ASD related things we manage daily, Hubby's Bipolar symptoms have been increasing and causing him issues that have led to him needing to reduce his working hours.

As if that isn't enough we have also seen the addition of 3 other medical issues in the family over the last few weeks. I do my best not to complain, but I sure have struggled the last couple of weeks in particular to maintain a positive frame of mind.

Any one of the things we manage on its own wouldn't be that hard to deal with. Even a couple of them wouldn't be too bad.

But, honestly, I keep thinking to myself, how much more do we have to deal with here?!

I mean, every time something new comes up, it's just another thing to add to the rest. And usually involves another onslaught of paper work to be filled in. Not to mention the added emotional stress and anxiety load. Then I find it difficult to sleep, and so the tiredness cycle starts up..... and my negative thoughts sometimes get the better of me.

I struggle not to dwell on the thoughts of envy that others have so little to cope with, yet still manage to complain so much. It takes a lot of self discipline to keep my thoughts on the track of remembering that the hard times come and go, things always work out OK, and there is always something to be thankful for.

Sometimes I have to give in to a bit of a cry, and just let it all out for a while so that I can clear my mind and get on with things. But, at the end of the day- or maybe more appropriately, at the beginning of each morning- get on with things I must. So I do, most days with a smile on my face, even though I might be wondering what the next thing to add to the rest will be.

A letter to my past self

Dear Me 10 years ago,

I know you think you have this parenting thing sorted out pretty well, but I need to tell you some things, because a lot is about to change for you. You have three great children, and you have found them challenging at times, but you are soon going to experience a different side of parenting that you haven't known about before. It is going to challenge you in ways you can't imagine, and it is going to make you into a different person. You don't know it yet, but you are going to be the parent of children with a disability. Right now those words freak you out. But take a deep breath, and keep reading.

Firstly, listen carefully when I say- everything is going to be OK. You are going to be bewildered, exhausted, at a complete loss for the right way to go, lonely, frustrated and frightened. You will grieve, rage with anger and give up hope. You will meet Autism. You will find your feet again, pick yourself up and you will go on. And you will be OK. So will your children. The ones you know and the ones you are yet to meet. You will all be OK.

You will need to learn to look after yourself. You don't know it yet, but you have a tendency to take on a lot and do so much that you end up not coping with anything. The qualities in you that cause you to do this are in themselves not bad. You don't need to change them. You just need to learn to pace yourself, to say "no" sometimes, and to recognise that your needs are as important as other peoples needs. If you are going to have what you need to be there for your family, you need to look after yourself well too.

You will need to learn not to worry what others think of you. In the past you have gone to great lengths to keep others happy and to do what you think they expect of you. Firstly, you need to realise that you are sometimes wrong in your assumptions about what others expect. Spending a lot of time doing things based on assumptions is counterproductive and ultimately a waste of time! Secondly, it is just not healthy to run your life this way. At some point you will need to shift your focus from trying to keep everyone else happy to looking after your own needs and the needs of those in your household.

You will need to learn to trust your instincts and be prepared to stand up for your kids. As time goes on you are going to find that you will need to be a strong advocate for your children. There will be times when others do not understand what your kids need and you will have to stand up and tell them. Sometimes they will ignore you the first few times you try to tell them, and you will have to step out of your comfort zone and do and say things in ways you hadn't tried before. Sometimes people will think you are pushy, rude and an over-reatcor. As long as you are not disrespectful towards others, this is OK, and you can rest assured they will get over it. Trust your instincts- if your gut tells you your kids need you to stand up for them- do it.

Above all, don't have regrets. You are going to take time figuring all these things out. You will probably read this letter and disregard most of it, because, let's be honest.....no matter what people tell us we can't really understand it until we experience it ourselves. If you take nothing else away from reading this letter please remember, you will make mistakes, but you needn't regret them. You will take on too much and burn yourself out. You will have to swallow your pride and ask for help. You will need to take antidepressants for a while. Don't waste time regretting it when you don't get things right the first time- it is all part of the process you need to go through so you can own who you will become. You will get there, and you will make some great decisions as well as some you will have to fix up later. You will have lots to be proud of. Please remember when you are feeling low that you are also doing your best. No one can expect more from you than that. Not even you.

And rest assured, that in 10 years time, even though you have made mistakes and taken a long time to learn things the hard way, I will be there looking back on you and smiling, grateful for who we have become.

from You 10 years later.

Keeping up....

My Wonderful Hubby could see I was struggling to keep up- I have been sick- and he gave up his work weekend to spend time with MissG and gave me a rest. I didn't realise how tired I was until I stopped. I spent the first day laying around doing nothing. I spent the second day sitting around catching up on stuff I could do while sitting around. Aside from the fact that it is nice to be looked after in this way by my Husband,  it was nice to have reminder of how much work it is to keep up with MissG when observing how trashed he was after spending 2 days with her!! I felt my tiredness had been validated in some way, and that I needed to take the opportunity to be reminded of the fact that I need to take care of myself.

As time goes by I am more convinced that caring for an ASD child is something you cannot even begin to understand until you have done it. Not just a bit of babysitting, but been there- as the child's primary caregiver- day after day. The language available to us to describe the behaviours is the same as for any other child- meltdown is a term widely used these days, overload is assumed to mean they are a bit past their best. But when the parent of an Autistic child uses these words they mean something different. I have talked about meltdowns and sensory overload before here. Until you have lived with it, you just can't know how exhausting- physically and emotionally- it is. And that is just from the parents perspective! I read a great blog post today on how a meltdown feels to someone with ASD. It is on a blog called 'Aspie Warrior', and you can read it here. Supporting a child through the experience of a meltdown and helping meet their needs, while making sure your other kids needs and your own needs as a parent are also met is quite the juggling act some days!

Some days it just feels like you are barely keeping up. Or not even keeping up. Yet the pressure to do so much more as well is ever present. We *should* have a tidy house, washed clothes, kids homework done, healthy food on the table, bills paid on time, smiles firmly affixed, and everything looking "normal".

Well, I'm going to say here and now that I am tired of this kind of keeping up.

I am happy to make time to keep up with the important things my kids want to tell me at the end of a school day, and to keep up with the changes in policy that are affecting my kids education, to keep up with making sure my kids know they are valuable and loved, to keep up with maintaining relationships that are beneficial for myself and my family- the relationships where mutual support and understanding exists.

But I am over the type of keeping up that puts unnecessary pressure on me and my family to conform with the normal that makes others comfortable. I am by no means planning to start a new trend in unhygienic living- but I am going to be more aware from now on of my own reasons for doing things and be more careful to prioritise my time and energy expenditure. The washing and cleaning will wait. As will being the parent who is active in this and that and spends days racing here and there looking busy and supermum-ish. My kids need my attention now. They need me to have the energy to advocate for them. They need me to be rested enough to speak clearly and and truthfully on their behalf, and I'll not be spending my energy and time keeping up with societies expectations of me as a housekeeper and Stay-home-mum when I need it for more important things.

You have been warned!

Feel free to join me if you like!

Tough decisions

I'll admit that I do tend to be juggling a lot of things all at once.  I've speculated a bit about why I do this, and come to the conclusion that I just like to have a busy mind as it stops me obsessing about just one or two stressful things all the time.

Parenting tactics

Fixit Hubby is downstairs working on the back door lock on my car. It's been playing up for a while, and he's been thinking about it in the back of his head for as long as it has been playing up. Tonight he's had an idea, so he's trying it out.

Being a parent is a privilege

I was involved in an online discussion recently in which some ladies were talking about ways to avoid getting stretch marks, or failing that, to get rid of them. A few ladies commented proudly that they didn't get any stretch marks from being pregnant. Others were so keen to get rid of them. Many had tips about products to use to help them get their youthful skin back. I couldn't help feeling sad about the discussion.