Feeling a bit lost, tearful and overwhelmed - Parents of children with autism: I’d love your advice please

(15 Posts)
Sunny4124 Sun 14-Oct-18 23:58:09

Hi everyone,

I’d love some advice from parents of children with autism please, feeling a bit lost, tearful, overwhelmed and clueless to be honest :-(

So, our beautiful DD is 2.6, and she’s displaying quite a few red flags for autism: severe speech and language delay, no joint attention, doesn’t respond to name, tiptoe walking, doesn’t stay still ever/ runs off, very sensory seeking, very limited eye contact, etc.

First question: I just wanted some advice on what to actually do/ check the course of action we've taken, as I’m feeling pretty overwhelmed. What we’ve done so far is this:
1) When we first noticed the speech delay we decided to bring nursery forward by 7 months (she was with grandparents), in the hope that mixing with other children would do her good and even encourage speech. She’s now in 2 days a week and loves it
2) We’ve explained our concerns to nursery and they’ve referred her (on our request) to the NHS SALT, but the waiting list is extremely long.
3) I have spoken to both the HV and GP, and their view is very much “wait and see”, as she’s still so young, which I find really frustrating. You hear all these things about early intervention, so waiting just doesn’t sit right with me (or am I being impatient?!)
4) Whilst we wait for NHS on the list, we’ve gone private for speech therapy. It just seemed too important to wait. The speech therapist agrees that lack of attention and listening is at the heart of her not speaking/ understanding, and has taught us some techniques for intensive interaction with her, to encourage eye contact/ turn taking/ back and forth, which she seems to be responding to so far, although it’s very early days.

Just wanting some advice on what to do next. Are we doing enough with the things above? I just feel so inexperienced with this and so clueless. Thinking I might phone the HV again and be more pushy and ask for a full assessment? Any advice? I really don’t want to let her down :-(

Second question: Any advice on how I (and her Dad) cope with all this? I don’t think I’m dealing with it very well, it was a massive shock for us when we realised how delayed she is. I absolutely adore her and I just want life to be easy for her. The thought that it might not be just breaks my heart. I’m so worried for her future as I just don’t know what to expect. I love her so much and find the fact that she doesn’t say Mummy and often doesn’t wait to interact with me utterly devastating (Although actually with her being sensory seeking she does love a good cuddle with her Mummy which is amazing). I fear that she may never talk, which is obviously a possibility. I find it extremely hard seeing friends with children who are the same age or even younger than her, who can talk, it devastates me. I know that sounds stupid. Any advice on how to come to terms with this myself, and how to view the situation a bit more positively? I’m normally a positive person, but not about this - I’m just crying about it all of the time. I am very lucky in that I have a very supportive partner, mother, MIL, and a few close friends and they’ve all been a massive help through this. And they all love her so much no matter what :-) I just feel like this is the toughest thing I’ve faced in my life and don’t think I’m dealing with it very well. But then I think, there are people in MUCH worse situations, and sometimes want to just slap myself and tell myself to snap out of it. Argh.

Any advice from people in a similar situation but further along would be much appreciated! Sorry for the rambley post! Thank you xxxx

OP’s posts: |
livpotter Mon 15-Oct-18 06:53:34

Hi Sunny.

It does sounds like you're doing really well and it's brilliant that you have so much support around you. I was in a very similar position when my ds was that age and having supportive friends and family made a huge difference to me.

I remember very clearly how I felt then and I think how I got through it was to read loads about autism, particularly books by autistic people, like Temple Grandin and Naoki Higashida (the reason I jump was my go to book).

I had similar from the HV about waiting, so initially we did a private multi disciplinary assessment. It was very expensive but very good for giving me a clearer picture about ds. It also gave me more leverage to get the NHS process started earlier. Having said that he still wasn't diagnosed until 4 when we started noticing signs at 2.5.

For him having an OT has been crucial, and it's something in my opinion has been worth the money to do privately.

Something I wish I had done earlier was start using Makaton.

Look at your local offer and see what support there is in your local area. People often recommend The Early Bird course on here, it might be worth seeing if they do it near you.

I would say for us that things are easier now that I understand ds more and have put lots in place to help support him. To be honest I find all the paperwork, chasing up of professionals and generally dealing with other people far more stressful than ds himself.

I still sometimes find it sad when I see him among his peers or when he is having a very anxious period but he is always surprising me and I never know when the next milestone might suddenly happen.

Sunny4124 Mon 15-Oct-18 08:08:35

Thank you so much for your advice Liv! How old is your son, and how is he doing now? What type of things has the OT helped with? Off to work but will reply more fully later :-) xxx

OP’s posts: |
livpotter Mon 15-Oct-18 09:17:01

He's just turned 5. His speech is getting better all the time, although still nowhere near the level of his peers. He's generally a very sweet and loving little boy, although having said that he's just gone to school and I could hear him screaming all the way down the street!

He had a massive regression at 2.5 and lost pretty much all of his speech. He was so overrun with sensory processing issues that he was really unhappy and not able to learn anything.

The OT has done lots of things. Initially it gave him a safe space to explore new things. It helped him to bond with people other than family. It gave me an idea of activities to do with him and how to carry them out. Most importantly it gave him the experience of being regulated so that now he has ways of regulating himself. They also help with getting him to listen to and understand sequences of instructions.

It's also been really helpful having the OT reports as part of the diagnosis and making sure that his sensory issues are addressed in his EHCP, particularly as my borough are notoriously difficult about giving OT referrals.

spader1987 Mon 15-Oct-18 11:07:31

Hi Sunny,

Firstly I just want to say your doing a fanstastic job! Your doing all the right things to help your dd so don’t worry about that.

I’ll try and go through your questions one by one and add anything if I can that may be helpful.

Does dd get any extra support at nursery from a 1:1?

I would contact your health visitor again. I would explain your concerns and that nursery also has concerns. I’m not sure which part of the country you are in but ask hv about portage. If this is something that is available ask to be referred to them. Where I live you can self refer to the early years send team for assessment, monitoring and intervention. Multiple agencies are involved such as salt and portage. If you have this locally push for this!

If not get nursery to write down there concerns and go back to your gp and push for a Pediatric developmental referral. Also write down all your concerns in detail and give this to your gp. Take dd with you if possible.

The private Salt is a great idea and one that you can use to your advantage. Get them to do an assessment off dd’s difficulties and write you a report. This will be very helpful when going to the gp and hv as you have a written report from a salt professional telling them that dd has a significant delay which needs further investigation.

Has the salt you have been seeing suggested any alternative communication methods to try with dd at this stage?

Your a defiantly not letting dd down at all! Your doing all the right things but I would try the above to try and move things along a little quicker.

As for coping with these things, it’s easy to say but you just do. It’s as you say a massive shock and not what you expect when you have a child but it is what it is. I’m saying this as a parent who is much further along in the journey. You have every right to be devastated but be assured by the fact that you are doing everything you possibly can. Remember to be kind to yourself and make time for yourself.
It took me a long time to come to terms with ds’s condition. I was utterly devastated and like you very upset seeing other children of his age and what they where doing.

I found a new normal, different ways of doing things. I don’t compare my ds to anyone because he is truly unique. I remind myself just how lucky I am that i am his mum. Ds is 8 he was diagnosed at 2 with autism. He is wonderful, funny, loving and daft as a brush (like his mum). He’s also non verbal and has severe learning difficulties, at this point it is certain he’ll never communicate verbally but that’s fine. There’s so many other ways to communicate, he can tell me he wants something by using his iPad or how he feels. Don’t get me wrong it’s hard as hell sometimes, I lean on those closest during these times and im not afraid to ask for help (I defiantly learnt that lesson the hard way). I’ve only mentioned this as you have a fear dd may never talk, more than likely she will! But I just wanted you to know either way things will be fine! Different but good, different doesn’t have to mean bad if you don’t let it!

You’ve got loads of time, and you will see lots of improvement.

Hopefully some of my ramble has helped.

Much love to you.

LightTripper Mon 15-Oct-18 12:41:28

Hi there - my DD is now 4.5 and was diagnosed just around her fourth birthday, but our nanny started to flag concerns when she was around 2 (no pointing, didn't ask for things). She's a bit different to your DD: more verbal, but less social by the sound of it (she tolerated nursery but I'm not sure she really loved it until she was older and at pre-school with a bit more structure). A heel walker rather than a toe walker grin.

For us those early suggestions that "something was up" were the hardest bit. I didn't really understand autism (suspect that might be a life-long study...) and because she was so young we just had no inkling of who she would become or what her challenges would be so we tended to assume/fear the worst.

I am very happy with where we are now. She is in mainstream so far without dedicated support (she does get extra support/attention e.g. at drop off, playtime, when they are doing special events at school, etc. but so far hasn't needed more). I know that may well not always be the case, but for now she loves school and is generally a very happy person. She has challenges around change (one-off events, staff absence, etc.) but otherwise she's a happy person and does fine at school so far. There is no reason your daughter can't be happy too.

The thing to remember about autism is that it's a "spiky profile" - I saw this really clearly with another girl in DD's pre-school class who was non-verbal at 2.5 and still at 4.5 she definitely struggles with speech, and she has a lot of sensory issues (doesn't eat most foods) BUT she actually socialises more easily than my DD - at parties I can see her running off and playing with the other kids much more than my DD does. Although DD talked pretty early I think it took her a long time to really communicate: but it also took a long time for me to recognise the difference between speech and communication.

Your daughter will develop and learn and grow. You'll forget about the worries you have now and find new ones - but then those will pass too. It is different but not worse (just like autistic people). You may even start to spot some traits in you or your DH as you learn more about it - and be able to pass on some tips and coping strategies to your DD as she grows.

As for resources, I found Neurotribes a great read (actually a great listen, I got it as an audiobook). It made me feel much more like we are part of a neurodiverse culture, and that feels a more welcoming and inclusive place to be than very medicalised ideas of children with "deficits" (don't get me wrong, I'm not saying there are no challenges, and I know many have more challenges than we do - but I still struggle with "deficit").

I've also found a lot of comfort following autistic people on Twitter (you can search for #actuallyautistic to find autistic people and use #askingautistics to ask questions where you would like an autistic point of view) and on YouTube. I would probably start with Purple Ella as she is autistic herself as are two of her three children, so she has lots of useful tips and insights. She also has a really nice series of discussions with a friend who is also autistic and was selectively mute when younger.

There are also some speech therapists on YouTube with useful videos. I like "Walkie Talkie Speech Therapy" - she has lots of videoed sessions trying to encourage children to talk and she puts captions over to explain what she's doing and why.

In terms of "what to do" I would push for diagnosis so you at least know where you are before she hits school. Make sure you are on all the waiting lists you can be on. Is there any way to access SLT in your area via a drop in? In our area they have "Talking walk-ins" where you can see a SLT "on the day" to talk about how your child is doing (we are actually going to try to use one with our younger DS in a couple of weeks as he isn't saying much yet). If you Google your County/Borough and "speech and language" and "drop in" or "self-refer" or "early years" does anything come up?

In the mean time look up Makaton and PECS and see if either look good for your DD. If you are thinking along the lines of private support we have a service from an ABA company that we Skype with twice a month (called Beam ABA). I have found them very good for ideas for ways to engage our DD and help identify what skills were achievable for her, what was holding her back, and different games and activities we could do with her to help her build those. ABA is quite controversial, but done this way (by us, not very intensively!) I found it useful in identifying what developmental stages were "next" and finding good manageable ways to work on those (breaking stuff down into tiny steps). It's not cheap but it's obviously much cheaper than the hugely intensive interventions that some people do.

It is a really good sign that she loves nursery. Hopefully that means her sensory challenges aren't too severe if she doesn't mind the busy environment, and she is enjoying the variety of different toys and activities that they have there, so that is already a really good base for the rest of her education. Try not to panic. It's a big adjustment and so much to learn - you have to give yourself time. Speech still has plenty of time to come, and it isn't everything anyway - communication is the key but there are many many ways to communicate and you will find one (or more than one!)

Sorry that was very rambling, but hang in there. Sounds like you are doing all the right things. There is a huge amount to wrap your head around and it just takes time, but you will get to a happy place.

sickofsocalledexperts Mon 15-Oct-18 12:56:20

Don’t listen to ‘wait and see’ advice and try AbA, echo previous messages. ABA helped my boy talk and lots of other skills, where ordinary SALT was unable to help

Www.abaa4all.com

amunt Mon 15-Oct-18 16:04:53

Same as sickofsocalledexperts . ABA professionals are the only ones who have really helped ds progress. Their understanding of autism is far superior to that of LA so called experts.

Sunny4124 Thu 18-Oct-18 21:30:58

Hi everyone! Thanks for your absolutely lovely messages, they’ve really made me feel loads better about everything :-) And sorry for the delay in replying, it’s just been crazy :-)

So basically since I’ve posted, I ended up phoning the health visitor the other day for advice and ended up crying on the phone (oops). Anyway she was brilliant, and is referring my daughter for a joint assessment (paediatrician, SALT, OT, etc). So feeling lots better and like action is being taken :-)

Liv - Thanks for saying I’m doing well, I hope so :-) Yes, family and friends support becomes even more important at times like this hey! I love the idea of reading books on the subject as just feel like I know so little. I totally understand about feeling better now things have been put in place for your DS, I think that’s why I feel so lost as I don’t know what to do for the best at the moment. And awww your son sounds lovely! Hope he’s getting on okay at school. Great news that his speech has come on :-) Thank you xxx

Spader - Thanks for your lovely note! She doesn’t get any 1:1 at the moment but has only been at nursery a few weeks - But I guess as she gets older it might be something she needs?!
Thanks for sharing how you felt, makes me feel that I’m not alone. LOVE your comments about a new normal, and about not comparing (I’m finding this sooooo hard to do!), and I especially love “different doesn’t have to mean bad if you don’t let it”. That’s an amazing quote and one I’m going to remember moving forwards. So thank you :-) It sounds like you and your son have LOTS of fun together :-) And much love to you back :-) xxx

Light - I know what you mean about fearing the worst - that’s where I am now I think! Lovely to hear that your daughter is so happy and loves mainstream school. I’d say in general DD is a very happy little girl too, apart from the odd frustration about not being able to communicate. Them being happy is what matters at the end of the day isn’t it :-) I’ll check out that book recommendation and Twitter and YouTube too! Ooh I’ll also look up the ABA reccomendation, I’ve been thinking about looking into it, and at the moment we’re willing to try anything that helps!!!!
Yes, she does really love nursery -she seems to be more on the sensory seeking side rather than over sensitive, so I think she likes all the noise/ people/ colours/ activities of nursery :-) Thank you for your lovely words! Xxx

Sickof and Amunt - Thank you, I definitely definitely need to investigate ABA :-)

Thanks all for your amazing advice, you’re a lovely lot of people and have made me feel loads better xxxx

OP’s posts: |
hargreeves Fri 19-Oct-18 18:51:01

Flip side opinion on ABA but it is incredibly controversial. Some parents swear by it, some hate it. A lot of autistic people find it absolutely awful. It is shown to create progress in surface interactions and trained skills but there are also case studies suggesting that it can cause high levels of anxiety and trauma. The therapy is based around making an autistic child appear more non-autistic (aka neurotypical) and that is quite controversial. Also because a lot of autistic behaviours are a means of communication so if you eradicate them, you risk taking away the communication without solving the problem. I have autism, work with autism and my son has autism and watching videos of ABA makes me cringe. You have to make your own mind up but look at both sides before making a decision.

The assessment sounds great. I'm glad you were listened to. If they do a full assessment that will be awesome and hopefully give you more information to go on.

If she does get diagnosed with autism, please don't despair. I always say, it makes some thing harder, some things different and some things a whole lot better. It's a completely different way of life because the brain functions differently but it doesn't have to be a terrible thing. You are doing great by being so attentive and loving with her and that is exactly what she needs from you.

livpotter Fri 19-Oct-18 20:48:29

Thanks Sunny, I would say that as my ds gets older and I get to know him better (his triggers and likes) the more he teaches me. I know it sounds a bit cheesy, but honestly I take my lead from him.
The more I have focussed on his interests over the years the more trust he has in me. The age your dd is at now was when my ds was at his most challenging because neither of us understood each other. the more I learn about autism the easier it is for me to understand why he is behaving in certain ways.
I'm with Hargreeves on the ABA. I felt that it wasn't for my ds, but i know it does work for some people and as lighttripper says it can be used in different ways to more suit your dd.
Sorry for the waffle, probably one too many glasses of wine this evening!

MumUnderTheMoon Fri 19-Oct-18 23:24:09

It sounds like you have done all the right things up to this point. I know the wait and see approach can be frustrating but this is because all toddlers display some autistic traits they are just usual developmental stages that most kids grow out of so they will have to wait until she is a little older to see how she develops. As far as her speech goes; my dd was almost completely non verbal up until age 5 she's 11 now and she just won't shut up! She has a lovely use of language it's a little old fashioned and she does exhibit echolalia but is very chatty now. We used makaton when she was little it's very easy to teach and stops them becoming frustrated in the meanwhile. Try the sign for biscuit first it took my dd about 20 minutes as biscuits are a pretty good motivator. You can learn the sign on YouTube then just hold up a biscuit ask if she wants it and show her how to make the sign. Physically move her hands so that she is doing it then give her the biscuit and lots of praise do this a couple of times then let her do the sign by herself she may get a bit cross but stay firm and only give her the biscuit once she attempts anything that looks like she is trying to sign. If she doesn't like biscuits or you'd prefer to use a different treat you could try doing this using the sign for "more".
I know you are upset right now and it is bloody annoying when people are trying to be positive and you are feeling uncertain and worried and just not ready for that. It's ok to feel as you are no one wants anything other than an easy life for their child but when you are ready to be less upset pick yourself up and decide that no matter what you will be fine. A lot of kids with additional needs don't realise that they are different to the people around them and many who realise it don't care it is us as parents who often suffer most so the best thing to do is to focus on you little ones happiness. Maybe all will be well and she will catch up developmentally but maybe she won't and some days will suck and you will rage about it like I'm sure alot of us do but mostly you'll love her and cherish her and find a way to find joy in her differences.

Sunny4124 Sun 21-Oct-18 14:06:37

Hey everyone :-)

Hargreeves - Thank you :-) It’s good to have another perspective on ABA, thanks! Need to do lots of research on it I think, as to whether or not it’ll suit us/ my little girl, as like you say people obviously have very strong opinions either way!
Great to have a view from an adult with autism too, I appreciate it, as this is just a whole new world for me, so thank you :-) Ahhh and thank you for your lovely words on being loving and attentive with her, I hope so! I am here for her and will do what’s best for her no matter what and she’ll always always know that!!! :-) xxx

Liv - Hi again! I love what you’ve said about getting to know your son better and being led by his interests etc: you’ve obviously got a great relationship with him and it’s lovely! I’m super close to DD but I do feel that there’s still some things that I don’t understand about her no matter how hard I try to “tune in”, and hoping, like you, that’ll improve as she gets older, and also as she hopefully starts to communicate more :-)
Thanks also for your view on ABA! We have the speech therapy in place and now have the multi disciplinary referral as of this week so since my original post I feel like things have moved on/ things are happening a bit more - so I think I’ll see how all of that goes for the next couple of months and then decide. Not sure whether I’m imagining it but she’s only had 3 x speech therapy sessions and her eye contact seems to have improved a bit already!!!! :-) xxx

MumUnderTheMoon - Hi! Yes that’s pretty much what the health visitor said with the “wait and see” approach, although for me, I feel much more comfortable with her having speech therapy, being assessed, and having everything in place, and then if for some reason she does catch up, then no harm done I guess :-)
Wow, LOVE the story of your daughter completely catching up on her speech after being non verbal at 5, she’s done amazingly, and she sounds lovely :-) Did she have speech therapy? Any tips?
I’ve thought of Makaton, although at the moment she doesn’t do things like wave for bye etc, so I’m not sure whether it’d work on her, I’ll speak to the SALT about it and thank you for your tips :-)
And the last paragraph you wrote is lovely: I will definitely love and cherish her and embrace her differences, they’re part of her and without them she wouldn’t be her lovely, slightly quirky, cute little self! :-) xxx

OP’s posts: |
chicken2015 Sat 08-Dec-18 11:16:28

Hello, i was thinking of posting a similar OP, i have 22 month old and i am a early years teacher so is trained in looking out for signs and my daughter is showing most, no eye contact, doesnt voluntary interact with me or her dad, in her own world 90% of time, doesnt say mum or dad, doesnt wave or point, its came to a head this last week due to dad mentioning it to me so i have spoken to health visitor and they have come over and said they would start process with 2 year check a bit early and went through process of assessing for Austim.
I work in a small village school who has lot of SN childrens and a few staff have SN children and was recommended a book called "more than words" by fern sussman. Its definitely been helpful, and we have been using a lot of suggestions in it. Its also massive so lots to digest, which has been slightly overwhelming!
I can also relate to the feeling of heartbreak that my little girl is not doing what the rest of my friends children same age are doing, and have been very emotional this last week, im trying makaton not quite sure it helps but giving it a go. I would definitely recommend book

BlackeyedGruesome Sat 08-Dec-18 17:44:29

ds only had a few words at 2.6 (less than 50)

by 8 he was monologing on minecraft incessantly.

if you search in sen chat you will see he is also quite fluent in some otherways as well.

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