I have a daughter who was recently diagnosed with autism. I'm finding it quite overwhelming

lulu221110

Hello @Vae and thanks so much for the message

I am really glad you are finding some warmth in these messages. It can be a very lonely and isolating time. Your little boy sounds like he has lots of things that he likes which is great, and I had not heard of autistic cafes so I am going to have a look to take my daughter to one too! I have just applied for short breaks for her, so hopefully she will have some activities she can join in with soon. Sorry for the late reply, we have just come back from ten days in Crete, which was really nice but so SO tiring. I think I need another holiday after going on holiday!

Message me anytime you fancy a chat

Lu xx

Sosky

Hi Lucetta, 
Glad to hear you've managed to have a holiday away, but I can understand how tired you must be after traveling and being in a different space for ten days. How did you daughter cope with the flight and with change to routine? We've never flown with our boys, most adventurous thing we have done is Eurostar to Disney, which actually worked well although it was a full on few days!
I'm so sorry I haven't replied sooner to your lovely message from earlier. Thank you for all your kind suggestions and advice. I have heard of the Engine Room but never been there! I've done several courses at Markfield which have been extremely helpful, but somehow I've not yet got it together to go to the playground there with the boys. I'd definitely like to try it, if you fancy meeting up there, maybe once everyone has gotten settled back into term time?
Some good news on the activities front - I've managed to get my four year old into a disability gymnastics class in Camden (we tried a mainstream one last year and it didn't work for him at all). 
Hope you're getting some rest this evening
Catherine

lulu221110

@Sosky Hi again Catherine!

Yeah, I am actually pleased to be back at work and into a routine again as it means I get a bit of a break (haha!). The flight across to Crete was OK, we wore one of the sunflower lanyards for disability and it did make a difference. The staff were very attentive and we cut most of the queues. Settling in was ok after the first few days but her eating was a bit worrying. I just felt like I was on tenterhooks the whole time waiting for her to have a meltdown, so even when it didn't happen it was still tiring. Although I did enjoy the change of scenery and I wouldn't say that I did not enjoy myself, it was just a lot. 

Definitely up for meeting at Markfield sometime. I am not sure how we can contact each other so if you can find a way to send me your email or number please do and we can arrange it

How are the gymnastics classes going? I am thinking of trying to find some for my daughter too (I think I need to work up a bit of energy first).

Have a great weekend,

Lucetta.

Sue_Alumni

Good morning @lulu221110 and I'm so pleased that other members have reached out to you ... and you've reciprocated.  Just be aware - and this is to everyone - that this is a public forum and be cautious about sharing personal information. It is important to keep yourselves safe  

Laurenxsned

Hi. 

I’m not sure if the users on this thread are still active but I wanted to reach out too. Reading some of your experiences has been refreshing. I think there are some things that only fellow SEN parents really understand. 

I’ve had a few really tough weeks with my 5yo and have been feeling quite alone and overwhelmed by the level of distress and what feels like steps backwards that we have taken recently. 

Anyway, I’m not sure where I’m going with this but just wanted to let you know there are more of us out here and always down for a chat/listening ear if needed. 

Hope you’re all taking care of yourselves x 

lulu221110

Hello @Laurenxsned

Nice name! I say that because it is the name of my daughter

Sorry to hear you have been having a tough time, and for my late response!

Yes, it can be a very lonely place can't it? Even if there are good friends and supportive family members around it can feel at times like they don't really 'get it'. I don't feel having a child with additional needs is something people can understand the weight of easily if they have not experienced it themselves. I actually have my daughter's autism review tomorrow, and I had her EHCP review on Monday and it is really taking it out of me. I just find it really tiring. At home she is so relaxed and comfortable, I forget about the challenges she faces at nursery.

How have you been? I hope you have been having a better time lately with your little one!

Lu

lulu221110

@Sosky
Hey Catherine! Just thought I would write and see how you are as it has been a while. I hope you and your sons have been well.

I have been busy with my daughter since we last spoke with the new term etc. She has recently started a dance class on saturday's at the Engine Room which is challenging for both of us, but she still says she wants to go so I have been grinning and bearing it as I don't want how I feel to stop her from doing things. We also just signed up to this free music therapy thing which looks like it will be good. I got some short breaks direct payments for her which have been fab, I can use them for anything that is not education. I plan to use them for her dance lessons, swimming (one to one) etc. I just used a few days for her playscheme at nursery. It is well worth looking into it if you haven't already (which you probably have!)

We had her ehcp review meeting on monday which was good as she has made a lot of progress but still difficult to process. Her autism review is tomorrow so I have a fresh bout of anxious feelings and overthinking going on!

Anyway, just thought I would check in,

Hope you are all ok