My son and Christmas

[ItIsntJustAPhase]

He is nearly 10. Don't have long to post but he has been assessed as borderline ASD but he really struggled with Christmas this year again. Total meltdown by the evening, lots of trying to do things that weren't really acceptable because we were in someone else's house, lots of saying he wanted to go home, lots of tears. So sad that he hates all the things that make Christmas special, and we end up having to do things that don't feel at all Christmassy (to me) to help him through it. Things that feel like entitled, selfish, controlling, materialistic behaviour... because actually that is what he needs out of this season. Sorry, just struggling today.

Hi, sorry you are having a hard time. I felt like you do when my ds was younger. I changed the way we do Christmas the last couple of years to suit my ds and we have lovely quiet Christmas' at home now. We have family traditions that we do every year and they make Christmas time special for us but we do stick to a routine with lots of advance notice about events and seeing people.

I think the socialising and unpredictability can be too much for my ds. If he says he wants to go home it is a sign he has had enough and needs to go home.

Do you have a lot more social things planned for the holidays? I hope things get better for your DC and for you x

Christmas brings such high expectations, its very difficult for all children, especially some of ours.
Just be pleased that we have got through it, and as things return to routine hopefully your DS will begin to feel secure and in control again.

My DS did remarkably well, until about 6pm on Christmas day, when he could no longer hold it together, and reverted to old behaviour patterns until he finally fell asleep at about 10pm.

Today has been a little better, and I hope each day will see improvements back to where he was before Christmas.

Thanks both. I am just sad that he can't roll with it more easily. Thankfully I am now able to understand that it is not his fault, he is not just being a PITA, and he is just overloaded.

I appreciate your insights. I would really love to know how much control you allow.

He said a few times that he just wanted a quiet Christmas at home but he isn't the only one in the family.

We actually have very few socialising plans now. His birthday is soon but we have a couple of weeks until that to relax. Lots of playing at home, lots of one to one since Daddy will be home, lots of him getting to call the shots. It will be okay. But I think he will probably be stressed about next Christmas.

Sorry

Oops... Sorry it's been so tough. I feel your pain.
However,my dd is almost 14 and lots of aspects of Christmas and the build up have settled down as the years have passed.
We cope by keeping socialising to a minimum and factoring in loads of down time.
This will pass,hang in there and get a break when you can.

I am a lone parent so it is easier for me to accommodate ds and his wish for a quiet Christmas. My family and friends found it strange at first but they accept it now.

I don't see it as ds controlling things. My ds needs things to be "the same" (his words) as much as possible. I accept that and try to keep things the same as much as I can. I also work with him to accept change and to deal with unexpected change. When he is very anxious and finding life hard I have to pretty much cancel everything out with the normal routine. He needs to stay home as much as possible. I feel like I live in fear of his ocd coming back that is why I am so careful to not overload him.

It is good your ds has some quieter times before his birthday. Does he like school? Maybe he will settle down after the holidays.

See, as I was writing that about control I realised that was totally my issue. I feel like he dictates so much of what we do, literally. But it isn't as simple as that.

School problematic at the moment. He came home last day of term and basically said he'd been being bullied by a friend. Which explained a lot of days coming home pale and tense and uncommunicative, no matter how much I asked he wouldn't say. So I will be dealing with that.

I honestly think that him'only' being borderline means I struggle to know whether he needs special treatment or not.

oh no, that's so sad. It must be awful for him at school. I haven't had to deal with bullying yet. I don't know what I would do. My ds is only 6 so I have a lot of problems still to come.

What does borderline mean? Does he meet some of the diagnostic criteria but not enough? Is there an assessment report that details what areas he needs support with? I can understand how that could leave you feeling unsure about how to be with your ds. Having the diagnosis has helped me feel more confident about dealing with difficult situations especially in public or in front of friends and family.

I hope things get easier for you and your ds.

He basically doesn't score very highly on most areas, just on the edge. And a couple he scores highly in while others he doesn't meet the criteria.

And mainly, he isn't doing badly at school (apart from spelling). So he isn't high up on anyone's priorities except ours.

I don't know much about the testing. They observed my ds for 5 days and then he was diagnosed.

If you treat your ds as if he does have a diagnosis you can't do any harm and it may help him. Have you read up on other things like sensory processing disorder and dyspraxia?

Finding out about the sensory stuff is what helped me to really understand my ds. An occupational therapist helped me a lot with that.

The sensory stuff has been incredibly helpful, yes. He has never been observed by an ed psych (!), the paediatrician relied on observations from us and his teacher. So I am pressing for that, privately if necessary.

I think as long as we are in our routine (loads of sport to run off the excess energy, few play dates, lots of down time at weekends) he is okay (ish) and it is easy to forget that he has additional needs. But it was just so starkly obvious that his litlensister was tired and whiny and overexcited by Christmas but he was losing it badly.

Thank you so much for your support. I have now email his pediatrician with an update an pressing for observations.

Hope you have a good holiday. You situation can't be easy.

Hi, your ds sounds very similar to mine. Need for routine, lots of sport, few play dates and lots of down time at weekends. These are the things that keep my ds calm and fitting in with the world. Most people don't believe he has a diagnosis of autism. But then when life gets busy, noisy and unpredictable it becomes very obvious that ds has autism.

It is good you have sent the email. It was the multi disciplinary team who observed and diagnosed my ds. The ed phsyc has always been useless.

Do you keep a diary of your ds' behaviour and video? I found these to be helpful.

I hope you have a better day today.

Thank you for saying no one believes you that he has a diagnosis. I think my son 'passes' because of all the work we do. And I keep thinking no one will believe me... Well family already know but it is already such a relief when people casually mention that they wondered about him, because it validates me. I'm not wrong, I know I'm not wrong, but not having a formal diagnosis means I am not taking sufficient measures, I think. I keep thinking he might not need special treatment, that he's not that bad.

I totally understand how you feel. My ds looks and acts like most other kids because he get so much extra support at home and at school. Most people I know don't understand this. I used to get upset about people not understanding/believing but now I don't care. But having the diagnosis has helped me be strong about these things.

But having the diagnosis is not the most important thing for your ds. Getting the right support is and it sounds like you are doing a fantastic job . Do you know you can claim DLA without a diagnosis? I got DLA awarded to my ds for two years without a diagnosis. It has helped me buy sensory equipment and pay for his sports classes and swimming lessons. My ds has eating difficulties and some motor difficulties so I had a lot of reports to back up my claim.

Ds2, 16, is on th spectrum, further along than your ds by the sound of it, and very similar about Christmas.

We now do Christmas at home, with the understanding that the house will be full of people doing Christmassy things, because thats what WE all like, but he can take himself away and take care of himself as much as he needs to. So he doesn't need to come down for presents, even meals if he doesn't want to.

That felt very hard at first; I love Christmas, but Im really glad we gave him the chance to find ways to keep himself ok, because thats what he'll need to do in his life. And we want to show him that if he thinks it through and tells us what he needs, we won't necessarily do everything he wants; as you say he's just one member of a family,
but we will respect the fact that he's communicating rather than acting out to get what he needs to look after himself, and we'll celebrate it and do our best to be flexible. What we want isn't 'right' and he's 'wring' - they're just wants. And we want to model being kind and flexible too.

I know its so hard when you feel like saying 'could you not be on the spectrum, just for today', but he can't.

It works for all of us now; we all compromise but it works.

'wrong' even

I did do various things to help him before hand. I wrote down a plan of what was happening when, loosely. We rearranged our sleeping quarters so there was less disruption for him.

I said that he didn't have to open presents if he didn't want to, but if there was something special someone wanted to see him open maybe he could open that. And I warned people he might not be joining in. He took himself off to a quiet room after a while but still ended up teary and verging on hysterical.

I did ask him to wear some smart clothes which he wasn't happy about (again, lots of warning, weeks of warning, he knew exactly which outfit).

He had asked for Christmas at home with no visitors from quite early in the year, so it was obviously playing on his mind. I will think carefully about next year.

Having said all this, he is much calmer now and said that he wishes it was Christmas all over again as he had such a good time, so clearly it wasn't a total fuck up.

Oh, and I did make sure to say, 'Thank you for telling me how you are feeling' as it is so important for him to communicate.

Sounds like things are better now. All your planning would have helped him a lot .