I’ll do it my way !!


As you will know if you’ve read my blog before I have two boys with autism. One is 9 (Ollie) and one is 18. Both have other conditions along with autism.
Until two years ago I didnt really know much about autism. My teenager was only diagnosed last summer after 8 years of me fighting for diagnosis and never really knowing what he had , Ollie was also diagnosed last summer.
Even now with two children diagnosed with autism I’m not an expert on it. I know my boys , I try my best to understand my boys but autism is a continuos learning curve. I would never presume that I know all about another person with autism because as they say if you’ve met one person with autism , you’ve met one person with autism
One thing I get very tired and frustrated by is people who just don’t understand at all giving me advice or their opinions on something they just don’t know .
As an example of this , Ollie doesn’t like going out. He finds it all very difficult. People , noise , the unexpected , it’s all just very difficult for him. I took him out of school in November and in the first few weeks he didn’t really go out atall. Since then I’ve built it up to a trip in to town once a week , where we have lunch in McDonald’s and usually go into one shop. This involves a couple of bus rides. And a visit to my mums at the weekend. Another couple of bus rides.
Ollie needs a couple of days notice if he has to go out and he’s very stressed before we do. He becomes anxious , agitated , his tics increase , it’s very important that there are no surprises and we only go to the places he’s been told about.
It means I can’t just take Ollie out if I need to run some errands. I can’t just pop to the shop with him or go window shopping.
There are some that believe I should be pushing Ollie more , making him go out , even that I’m allowing Ollie to control when I shop. Some people don’t understand that if we are in town I won’t make him go into a shop that he wasn’t told about. Whereas I feel very strongly about only doing things I’ve told him about. I get criticised if I don’t take him out every day.
Well , first and foremost , Ollie needs to know without any doubt that he can trust me. That he is safe with me. And that I understand the things that are difficult for him. He knows that I expect him to try going out and he knows I’m trying to increase it but I’m not going to rush him. Going out to busy places is very stressful for him. I don’t want to put him through stress. Why should I ? And as far as controlling when I go shopping , yes he makes it difficult , but I have 5 teenagers , if I need to go out I will do so when one of them can look after Ollie. I manage just fine.
Obviously I want Ollie to learn ways of coping with going out but pushing him into situations isn’t the way to do that.
With the nice weather coming we will start doing smaller more manageable trips to the park across the road or taking the scooter out for a ride. Ollie is happy not going out , why shouldn’t he be when it’s so difficult for him. He feels very safe at home.He lives with me and 6 siblings. People come to the house , he visits my mums house , he’s not living under a rock. He’s fine. He’s happy and we will take things at his own pace.
I could go on and on with examples , bedtime , mealtimes , meltdowns , I deal with these things in the way I feel works for my boys. And I’m sure that there are others who would deal with them differently. And that’s fine.
I always appreciate advice from people who have an understanding of autism , I even appreciate input from people who don’t know much about it, advice when constructive and from a well intentioned place is often a good thing. but what I don’t appreciate is criticism from people who really have no understanding.
I’ve never had much time for my boys psychiatrist , mostly because I generally find CAMHS useless. But after the meeting where he diagnosed my boys he told me that the most important thing to do for an autistic person is to allow them to be who they are. Don’t try to change them , just help them be the best THEY can be. and that will always stay with me.


6 responses »

  1. I love your honesty and take my hat off to you for doing it your way and not how others expect you too. People are more than happy to stick their nose where it isn’t wanted, I can’t believe that others are telling you what to do when their not the ones taking care of Ollie. I don’t know much about autism but what I do know is that they need to stick to their routine and if anything happens outside of that routine it can cause them upset. xx

  2. It’s difficult enough without people judging, but maybe some have never actually come across someone with Autism before and just mean well. I’m sure you are doing a wonderful job because when it comes down to it, Mums Know Best!

  3. Sounds as though the psychiatrist hit the nail on the head. And you know best, as Ollie’s Mum. As parents, we do what our children need us to do, when they need it. That’s the best way to help them get a good start in life, in my view.

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