Tuesday, June 12, 2012

Guest Post: "Having Autism at Home"

Good Morning Loveys,
Today I have a very special guest blogger.  I am a tad bit biased, though, and you'll see why.
Mari has always been someone I have been very close to and I cherish.
I hope you'll learn a little and enjoy her as much as I do.
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I am Mari, Nay’s cousin from Peru. I live in the UK now and have my own little family of four - hubby and two lovely kids. I met my hubby in Peru, but to cut a long story short - he was on holiday, love at first sight, within 10 months I was moving to the UK to live with him. Crazy, huh? We have two children, my eldest son is Tim, he is nearly four years old and was diagnosed with Autism this March (although I knew but was not sure since last September).  My youngest is Luna, she is two and is, in the language of us Autism mums, ‘neurotypical’ (non-autistic).

I have a blog of my own in Spanish – sorry haven’t had the chance to start translating it into English yet but am planning to do so when life gets a bit more normal. My blog is Tener Autismo en Casa (it translates to ‘Having Autism at Home’ or something like that). I began writing as a way of sharing my experiences with my family and friends.
Another important reason is that the topic of Autism is such a big topic,
so much to learn about, understand, take in,
I couldn’t wait until I travelled to Peru to visit to explain it all to everyone.
But this would be impossible.
So that is why I started writing,
to get things off my chest, to share
and to bring awareness of how families like my own live
and
what we need to change, adapt and think about to help our children.

As it is such a broad topic, I wanted to share a little about how it is for a new family to deal with new routines and resources at home and how it is all a joint effort. But before doing that, I’d like to say that Autism Spectrum Disorder (ASD) is very broad, and that every person with autism is different, all having different abilities and difficulties – some like my son have little speech, some are very fluent, some have no spoken language at all. So once you have met one person with autism, then you’ve met ONE person with autism, we must not generalize.
Once you finally get a diagnosis for your child, you can go in two different directions, one of feeling worried, anxious about the future and maybe even sad of letting go of the ‘idea’ you had in your mind of what your children would be like – because let’s face it, we all assume our children will be perfect and we don’t always stop to realize that perfection does not even exist. Or you can go on the direction of feeling relief, and a weird sense of happiness.
That is where I went when we got the diagnosis. I just needed to confirm that something was up and now that it had a name, I could look it up and work to make it easier for my son, it was plain weird when the pediatrician gave us the news and I smiled the biggest smile ever and refused the tissues I was being offered, I didn’t feel sadness, I felt relief.

Once I knew what we were facing as a family, I looked up resources, materials, support groups, you name it, I did it. Information is power! I found out children with autism have very good visual understanding, so instead of telling him constantly what he was supposed to do and what he was not supposed to do, I started showing him. Many flashcards, visual timetables (pictures that illustrate what we would be doing, one after the other), safety signs and many more were printed, laminated, and stuck to walls, cupboards, kept in handbags, key rings, the lot! It made a world of difference. He finally understood what I was talking about. Breakthrough!
As much as the visuals worked, it was important to try and give him a routine that worked for the whole family. So he got used to this routine and was happy to comply with it. School holidays and unexpected illness is never a good time for him, as he expects to carry on with what he normally does. We are getting better though.

When you plan a day out with your family, you might think about where you are going, who you are going with and maybe carry a snack just in case. In our family, a day out means planning an adventure; we need to choose the place, find out how many exits there are, as he likes to run off. We need to choose the right time, as crowds can overstimulate him. We need to make sure we take his food as he is a very fussy eater, he won’t just get a sandwich from a shop and eat it, no, no, no, no crusts, one type of butter, no salad, so we have gotten used to taking his food with us (even drinks and chocolate). We have to time it and tell him about where we are going as unexpected can trigger anxiety. I have pictures of most places we go to, so when he is about to get in the car I give him the picture of the place we are going to and he holds it until we get there. In the car, I tell him what we will be doing in that place. This helps him. If we are going to meet someone, also get a picture for him to hold, so he knows the ‘where’ and the ‘with whom’.
It might sound over the top to some of you, I don’t know. But this is what is NORMAL in my house, and we now do it more naturally.  It works for us. Everyone that is involved in Tim’s life at the moment, has to work under the same rules, as he needs consistency. It is a joint effort otherwise it is unfair on him to change things suddenly. I do like to change bits and pieces of his day but we do those changes gradually as he needs to get used to changes as life is going to change with no prior notice, he needs to be prepared to cope.

Having to raise a child with autism is not different to having to raise any other child, what you do for your child, I do for mine. I make sure he is prepared for life, for change, for people around him. I want him to be safe and happy. I want him to be respected and treated fairly. I want him to have a family, have a job and be a good person all in all. I just need to do some things differently. So why do I write on my blog, because some people don’t see it like this sometimes, they see me as an overbearing mum, as a walkover because I let my kid do things ‘they would never let their children do’. My child needs to do certain things to release something inside him to help him concentrate and be happy. He needs to hum sometimes, he needs to spin in the middle of the supermarket aisle, he needs to do push ups in the middle of a movie screening. So, I let him. He is not harming anyone, he is just being my son, and I love him. Sometimes he needs to scream in a tantrum over what to you is nothing, but to him is completely distressful as he doesn’t understand the world the same way you and me do. The world is confusing to him.  So then, I need to let him scream and make sure he is safe. Next time you see a child that is acting a ‘tad odd’ or ‘overreacting’ think that maybe that child has something else to deal with, a disability that is unseen. Don’t be like some people I’ve encountered and give that mum a ‘look’ as she might be already at her wit’s end and that ‘look’ might make things even worse for her. Be supportive and just give them a smile that says ‘it will get better’. That will make a huge difference at that moment for her.

Things do get better and we are looking forward to the future.

Big kiss and thanks for reading
 ♥, Mari

2 comments:

Salena Lee said...

I want to cry reading this! I could have wrote this. I have been having a very hard time with my almost 7 yr old. She was diagnosed with suspected aspergers among other things which we have suspected for a very long time, since birth actually. I don't know what to say except, I get it. Everything you wrote is what we do, how we live but because she seems "normal" sometimes even we forget we need to do all the things you mentioned which sets her off and then sets us off.

Thank you for sharing your story and for reminding me about my role as a special needs parent.

Much love... Salena

patty noriega said...

You are a super mom Mari !!!! I learn a looooot from you every day by reading your blog =)