> The Beesley Buzz: The ups and downs...

The ups and downs...

I just don't get it. Some days are so fine that I sometimes wonder if the doctors got it wrong. Perhaps he is not on the autistic spectrum at all. I mean - earlier in the week he had a couple of really good days. Did all his homeschool work really well, without fuss and did lots and lots of work, and then yesterday it takes until 4.30pm to do ONE small piece of work.

And then today, perfect all morning, special afternoon treat to go an watch Shrek with Granny in the afternoon (during which time I miss him like crazy because I am so used to having to try to stay ten steps ahead when he is around), eats dinner, but then bedtime...MAJOR MELTDOWN.

I just don't get it. I don't get the variability and I wonder if I will ever understand. These certainly are nothing compared to some of the worst experiences but they are stark reminders that our son certainly is different and any wishful thinking I have about a misdiagnosis flies straight out of the window.

Like a lot of parents with children on the spectrum, there is so much that I just wouldn't want any other way. A lot of J's quirks are what make him unique and special and we love that about him. I just wish we could help him cope better with the areas of his life that overwhelm him.

I guess we are just going to have to accept that to some extent it will always be a roller coaster ride with it's ups and downs, good days and bad days and we are just going to have to get better at accepting that is what a roller coaster ride does!

14 comments:

  1. I have it from the opposite perspective- my middle boy was referred for tests for aspergers/autism by his pre-school, and i was told he was just very bright. He is now 9, and most days I think he is fine, but his behaviour still needs managing, and sometimes I wonder if they got it wrong too, but having said that as he gets older his meltdowns become fewer, and he is getting better at managing social situations, but it still isn't easy! Bless them both xx

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    1. Sometimes at the high functioning / aspergers end of the spectrum I guess it is borderline and must be tricky to diagnose. J is also really bright academically but that wasn't spotted at either of the two schools he attended - it was down to the ADHD nurse who found he had ability levels beyond that of a 16 yr olds in some areas. How could school have missed that (we had raised it constantly with them that we needed him to be occupied and engaged at school but they just ignored that). I'm really hoping J will learn coping strategies too because sometimes i think he is coping better but then that is probably because, like you say, it is the situation being managed. oh well, tomorrow is another day. thanks for your comment - i always feel so supported to know that there are others out there who do understand. xxx

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  2. It could be the special treat threw him out of routine and caused the meltdown. Elliott has been so great lately but at the moment he is out of routine and his asd symptoms have returned

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    1. Hi Alice, I think that is really quite possible! With J there is often (well probably always) a reason but sometimes it is hard to spot the reason and sometimes we just get tired of trying to constantly figure out what went wrong and having to try to stay on top of things all the time - we find that sometimes we just crave a bit of 'normality' as it gets exhausting otherwise. But then there is the dilemma of surely it is less exhausting to spend more time planning and managing behaviour than dealing with meltdowns. Which i know is right - but as i say sometimes i just don't want to have to all the time. thanks so much for your comment - just great to know people care and understand. xxx

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  3. Roller coasters are actually quite fun, aren't they?! ;) I've had these thoughts too, and I certainly often feel like my ASD girl is easier to be with and less 'attitude' etc than my older NT girl. She's generally so happy - but that is of course because we are managing it. It almost becomes second nature - but like you say, it really is quite tiring and it would be nice not to have to think about every little thing. x

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    1. thank you Steph - you so 'get it'. Will have to remember what you say about rollercoasters - that's a great way to look at things. xxx

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  4. I feel the same way. Many times I feel my son is normal and then he has a complete wobbly! Oh well, they say variety is the spice of life...

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    1. thanks for your comment Louise - glad i'm not the only one who feels like it. xxx

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  5. Those meltdowns are no fun are they :-( I have the same with my young one,not easy when they have 'one of those days' x

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    1. thanks Jess. We had another meltdown tonight just because his brother got in the shower before he did! Sometimes it is just those little things that are enough to set it off. thanks for your comment x

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    2. I have just the same with my young un and yes the little things can floor him and cause such a bad,bad reaction.I know how it feels!We become adept at managing behavior don't we!

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    3. yep! I remember noticing how different our lives were to that of a 'normal' family when i once saw a mum doing her ironing whilst her children were awake! I've not been able to do that since J was born as it just wouldn't be safe with him around even though he is going to be 9 years old soon. x

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  6. I feel that way as well with my children one minute its as calm then the next so tempestuous. Autism is pretty much a rollercoaster ride, buckle up it could get a bit bumpy :)

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    1. thanks Wendy. I think we have definitely realised it can be a bumpy ride. So glad to know others understand and are also riding the rollercoaster too. x

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