Looking to connect with other parents

Thanks so much for replying, I’m so sorry you’re having such a tough time too - please know that you’re not alone. I think battling family and friends to be taken seriously has been one of the toughest parts of the journey for me (and one set of grandparents is still in total denial) it’s just so draining isn’t it?! Having to come to terms with the fact your child is going to have more challenges than their peers is hard enough in itself but to be accused of being paranoid or negative while you get others on board has just been so upsetting. Thankfully I think I’ve got to a stage now where I’ve started caring a lot less about others’ attitudes to the situation - I can’t control them but I can control my outlook and what I do to fight for my son and get him the support he deserves, so when I can just focus on that I feel a lot better. Our son also has some physical issues as he’s nearly two and not walking (whether that’s down to a physiological problem or a lack of motivation I can’t be sure yet as we’re still waiting for physio) but I totally understand the extra challenges you’re going through. I’d love to keep in touch as well - I’ve unblocked my private message account on here so I think I can accept messages from anyone now if you want to exchange emails/numbers etc., but it looks like yours is restricted at the moment so I can’t send you one. (I think everyone’s is automatically set to block private messages when you sign up so you just need to update the private message tick box in your profile settings from ‘no one’ to ‘everyone’) Would be great to talk more soon :) Lucy

Hi we have a little girl almost 3 years and we are at the same stage as yourselves ( awaiting assessment). I feel the exact same way as yourselves the constant explanation and people insisting it’s just a stage. I know that there is a problem and a paediatrician and speech and language agree but the limbo stage is unbearable with no support. I feel so isolated and lonely as our daughter never gets invited anywhere as she has physical disabilities also. I would love to keep in touch and supporting each other via a virtual friendship as we live in North East England. Hope to hear from you and we can share this journey together.

I will look into this as I have done as much research as I possibly can online so would be good to listen to it instead.Thank you for the advice

I listen to them on my iPhone (if you have an an apple iOS the purple ‘Podcasts’ app will already be installed on your device) but you can also listen to them on android phones or web browsers - if you just google the name of the podcast they’re usually hosted on a website as well. This article explains the basics of how to access Podcasts www.theguardian.com/.../how-to-listen-to-podcasts-everything-you-need-to-know I have to say I’m quite addicted to them - I find I don’t have much time to read anymore since having my son so they’re a great way to get some information in while you’re doing something else like making dinner!

Thank you for replying. I have heard about an EHCP but she did not need this in reception as she is already in a small group getting extra support but its mostly for the bathroom she needs support in but her school cannot provide that. I think she will need an EHCP in year 1 but I am going to see how her first few weeks go in year 1 and then move forward if needed. How do I find these podcasts as I would be interested to check these out.

I just tried and it says I can’t message you, probably because of the settings. Let me know if you can update them and I’ll try again. Thanks!

Hi

Thanks so much for getting in touch, so helpful to hear from someone who’s probably also battling with the same local authority! I’m new to this forum too but I think it does have a private message function so I’ll try and message you now. (I just updated my account settings so it says I can receive a private message from anyone but you might need to do the same too?) Let’s give it a try anyway!

Lucy

Hi Lucy, 

I'm from the West Midlands too. My son is 4 years old and undergoing assessment for autism. Most people reckon he has autism although getting a diagnosis is turning out to be rather long winded. I know what you mean about being unable to relate to parents of so-called 'normal' children, as my son is developmentally behind in many ways. I don't really think there is any such thing as 'normal' anyway as those that appear developmentally normal may have other issues such as epilepsy, diabetes, etc. I do agree it's good thing to get to know other parents of ASD children as we share a lot of the same issues, e.g., dealing with behavior and access to education, so can share tips/frustrations/laugh about it. I'm not sure if this forum has a private messaging facility - if it does, you're welcome to drop me a line if you'd like to chat.

Thanks so much for your reply, sorry I’ve been away for a while! Oh my goodness, that’s such a long wait! I really hope you get somewhere soon. Do you think you’ve faced extra struggles because you have a daughter? I’ve heard so much about how the system is set up to diagnose boys, but I really hope that’s starting to change. Where we live, support seems to be tailored to those who have school-age children so not much for the early stages of diagnosis with a toddler unfortunately, at least not that I can find! I haven’t heard about the NAS parent-to-parent service though, that sounds really good so will definitely take a look. I do think getting the perspective autistic adults is so key – I feel like I’m overloading myself with information at the moment, most of it from parents of autistic children, and while some of it is really helpful it can also be quite scary and bleak too! So important to remember that these little humans we worry about so much don’t understand why we’re worried most of the time! I certainly swing between feeling quite down to feeling really hopeful about what lies ahead. Definitely an emotional time but hoping that calms down a bit as time goes on.

Hi Laura

Thanks so much for replying, so sorry I’ve taken so long to respond. That’s great that you managed to get a diagnosis and support so quickly, it sounds like your little boys are thriving with the right structure, which is so good to hear. There seems to be a real lack of SEN playgroups where I live so I’ve really struggled to find any local support for my son (or us!) but we’ve paid for some private speech therapy and have recently started using PECS which has made a huge difference to us. My son isn’t in nursery but is with his grandma two days a week while I work. (Frustratingly I’ve been told that by not putting in nursery I’m ‘holding him back’ by some people but he gets so much quality one-on-one time with us and the rest of the family I can’t see how that would be worse than him being in a nursery with a lower staff-child ratio? But that’s by the by!) I think in a wider context fighting this sort of ignorance makes me less willing to socialise with other families with neurotypical children, and so the isolation seems to perpetuate, although I acknowledge a lot of that is down to how deeply sensitive I feel about this whole situation at the moment. Did you find those feelings lessened with time? I feel almost aggressively protective about my son at the moment, which I know is quite a natural maternal instinct, but knowing that the world is going to be that more challenging for him than for his peers just makes me feel so defensive!

Hi Stephanie

Thanks so much for getting in touch and apologies for the delay in replying. I’m so sorry you’ve had such a long wait to get to this point, being caught in the system is so frustrating, especially when you’re trying to battle for support. I haven’t heard about chill and chat sessions, I’m not sure they have those where I live in the West Midlands but they sound like a really positive way to meet new parents, which is so key when you’re going through something like this. (Our local autism charity seems to be focused on helping families with kids over 5 so I feel a bit lost at the moment!) Has your daughter got an EHCP in place? I only ask as I recently heard that a diagnosis isn’t required to get extra support in school, although that doesn’t mean you don’t have to fight for it, as seems to be the case with everything on this journey! If you’re into podcasts I’ve found a couple that I’ve personally found really helpful – ‘Talking Autism – parenting your unique child’ comes from the perspective of a special needs teacher who also has a daughter with ASD, so her dual experience of navigating the education system as both a parent and teacher is really interesting, and her interview on a different podcast (Stories about Autism – series 2 episode 2 Victoria Hatton) talks about getting help in school pre-diagnosis so it might be useful during the limbo stage? Either way I really hope you get some more support in the new school year.

Hi Lucy,

I am a mum of an 8 year old and 5 year old. my daughter who is the 5 year old has had her first assessment and we are waiting for her to have an assessment at her school but we waited for 2 1/2 years before we got the letter for her first appointment. it was a long wait but even now we are in limbo as they have not confirmed it and we cannot get extra help until they officially confirm it. I am waiting for the new school year to start up and I am going to going to the chill and chat sessions at my local children's centre these can help as you meet other parents with children who have disabilities they also have different professionals come each week and help you with what direction you need to go in.

Stephanie

Hi Lucy, 

I am a mum to twin boys who are four and a half, they have recently been diagnosed with ASD after a year wait for an assessment. We have been very lucky with the support we have been getting but the waiting around in limbo is hard and stressful at times.

The main thing I can tell you is you are certainly not alone as much as you feel it! Is there any support groups near you? Any sensory or SEN sessions you can take your little boy to?

Our boys thrive on their routine and can struggle with changes to this, they use visual cards in their playgroup setting which has proved very effective.

Is your little boy in a playgroup or nursery setting?

Laura :-) 

Hi

Welcome to the forum, I am mum to four children (one is in his 20's now) the others are 8,7 and 17 months, 

I understand what you mean about the limbo waiting for diagnosis, we have been trying for assessment for nearly 5 years now. 

Have you tried looking for local support groups? You are welcome to attend these without diagnosis, they are great for connecting with other parents, there is also the nas parent to parent service, I can't really give much information about this as I have never used it.

I found talking to autistic adults gives me the best insight into understanding my daughter, there are alot of autistic writers and bloggers out there who can help. 

Anyway just wanted to say welcome!