3yo with speech delay and sensory issues - how to handle my feelings?

[PeonyBlushSuede]

Hi, I'm really hoping for a little help and support.

I have a lovely 3 year old son, who has a speech delay. We are on the waitlist for NHS speech therapy, and also on a private waitlist as NHS is around 2 years in my area. We also had the community nurse visit and do the ASQ-SE questionnaire where he scored around 125, whereas expected was 58/59 for his age so referring to the SEND services. I don't really know what they potentially see - I was almost too scared to ask.

He is such a lovely boy, all I hear from nursery is how sweet he is and they have a soft spot for him, despite his struggles with emotional regulation. He loves adults and would take your hand from meeting you to drag you off to play! He's so funny and playful.

But I'm really struggling with my feelings as well. I seem to cry all the time, which is frustrating! I just worry so much about how he is going to be and will he be ok in the future, how will he cope at school etc.

How do you get past this, I feel so helpless and in limbo as we have all these referrals but don't really know what's going on.

Apologies if this feels a bit rambling, I hope you understand my feeling/sentiments and I am not alone! x

Hi, what you are feeling is totally normal. My lad was flagged with delayed speech, repetitive behaviour and sensory issues before he turned 3, he is 4.4 now. I have been where you are! We have expectations and hopes for our childrens' childhoods and when concerns are raised about their development at a young age it is very destabilising for us parents. I was tearful and anxious for some months - this does still spike from time to time around key dates (birthdays, choosing schools etc) and during the winter, but my emotions have settled somewhat as time has passed. Being kind to myself about feeling difficult emotions, and giving myself grace, has helped. I can talk about my son to most people without crying now.

It is hard not to worry about how our children will get on in life. We none of us know what the future will bring, so looking too far ahead will just put your mind through the stress as if you are living it currently. You have referrals in and the appointments will come, if your journey is anything like ours they will snowball. So although it is hard, try to take things day by day, with the occasional glimpse ahead for longer term planning. The fact that my children still need me to be a capable, mostly calm and engaged parent helps me to get on with the business of living.

My lad has made some lovely progress - allthough it looks different from a typical child. Some of this is because we have researched and learnt what helps him and have made adaptions accordingly - but a lot of it is simply because he has aged. All children change and progress in their own way and your son will too.

One of the best things I've done is join a support group for families with SEN children, we go most weeks - it's kinda like a playgroup. Joining it has been the best thing to meet other parents, and their lovely children, in similar situations. I pay £15 a month for this and consider it money well spent. I encourage you to see if there is anything similar near you, some are free. Facebook is a good place to find SEN groups.

Excercise helps me to manage my mood, I fit this around family life where I can, as well as getting outside in general. Anything that gives me 'flow', where I can focus and not let my mind wander, like a good book, boxset or craft or speaking with a friend can help too.

In 18 months you'll be writing a message like this to someone like you on mumsnet, I promise.

@PeonyBlushSuede i feel the same as you. Similar situation here so not much advice. (Also love the perfume you have for your username!)

@Flop2023 - this is really helpful advice!

@Flop2023
Thank you for this. It helps to know I'm not alone.
I feel all I do is cry at the moment!
I am so bad for looking super far ahead in the future and worrying.
I also feel so much mum guilt and blame myself for a lot
I really hope I am writing a post like this in a year

@Flop2023 also how did you find potty training. This is our next battle!

@ToddlerMumma21 thanks :) it's such a nice scent!

It's so bloody hard isn't it?! I loved the baby period too and felt like I sailed through that. Age 2-3 had hit me hard!

@PeonyBlushSuede

He trained for wee just as he turned four after 6 months of trying. But he is not trained for poo. And unlike a lot of children who struggle with toileting he won't ask for a nappy either, he will just go in his pants, which is difficult. We have some input from the health visitor for this and his nursery are incredibly supportive, which helps. But it is looking unlikely he will be fully trained before school, which I lose sleep over (when he lets me sleep!)

But they are all different. At our SEN playgroup there are children who present with higher needs than he has - e.g he has some language and they are non speaking - but they are fully toilet trained. So you don't know how your lad will get on yet.

There are other posters here who will be able to support you with things like DLA and EHCP's.

@PeonyBlushSuede I completely understand how you feel and I was you almost 3 years ago. I loved the baby stage, and it was happiest time.of my life so being confronted with the reality that my child wasn't developing as expected almost destroyed me. But as pps have said, the emotion does settle and you're able to find joy again. Plus all children change and grow and develop, regardless of their path. My son is making progress everyday. I of course still worry but channel all my effort Into helping him every way I can. Potty training took us a whole year I'll be honest but he was trained for wees and poos at around 4. He still wears a pull up at night at just turned 5, but we hope to night train by 6.

It does get easier, I promise.

Hi Peony, I would imagine what they see is possible ASD. That would fit in with speech delay, sensory issues and difficulty with emotional regulation. Adults are more predictable than children so that may be why he likes being around adults - they also are often fairer and follow the rules properly when they play! It's stressful when things like this first come to light but he's still your sweet darling boy no matter what. There's nothing to feel guilty about! One warning though - potty training was absolute hell with mine with (undiagnosed at the time) ASD, but he was also the stubbornest toddler you could ever wish to meet. You can't imagine the hoops I jumped through to try and get him to potty train! - still just as stubborn as a young adult but at uni now.

@WalkLikeaMartian
Thank you. I do love him so much and he is who he is. There is nothing 'wrong' with him. I think it's adjusting expectations. When you're pregnant you have this image in your head and you never want your babies to struggle - but that's not real life!

That has been in the back of my head, or possibly ADHD - he is on the go all the time!

When I go out all I hear is "does he ever stop?" And "I bet he will sleep well tonight well tonight" - no to both!

That's interesting to know about adults and I guess makes sense. Even at nursery if they have a new staff member he will love them and want them to play with him

It does get easier. When mine were younger I couldn't really talk about it without welling up. I now can. I would recommend finding other parents whose children have send. It is much easier if you are not always around NT children. Looking back I would also have done a bit of counselling if I could afford it as this would have given me an outlet fir my sadness.

I completely sympathise with you. We’re in a very similar situation with our 3.5 year old son. He’s delayed in speech, communication and understanding. He’s had one SALT appointment where they said “wait and see” with his speech as he’s saying sentences but referred him to our local children’s development centre due to his communication and understanding difficulties. His Nursery are amazing, he gets on well there and plays alongside other children very well. We have a brilliant SENco who have referred him for SEN services, they’ll be having meeting next month for a way forward for us. He is nowhere near toilet trained, he just doesn’t have the understanding. He starts school in September so I am just so worried. I know exactly how you feel about being in limbo waiting for these appointments to come through. I find not fully knowing how I can help him is making me frustrated and sad. I’ve cried a lot since having these referrals. I also have a lot of guilt which I’ve read is very normal. It’s such a hard time but what helps me is to focus on all the good points and his strengths. Please do keep us updated on how you get on

I think that's something I'm finding hard too.
Meeting with friends and they're talking about all the things their child has said. I know they don't mean anything by it but it's hard when your child isn't speaking the same

I'm sorry you're in a similar place.
Our nursery and SENCo lead is also amazing and I am so happy I chose that setting, as I didn't know I would need this support 2 years ago when he started.

The guilt is so hard. I keep thinking if I had done xyz more then he'd be speaking or behaving in a certain way. Even though if he does have sensory needs there's nothing I could have done to 'cause' it

I think this is why you need some sen parent friends if you can find someone you can get along with.

I'm going to have a look and see what I can find locally. I just didn't know of we would be welcomed as don't yet have any diagnosis. I overthink too much!

Lots of SEN groups don’t require a diagnosis.

This was me 12 years ago. It's totally normal how you feel, I felt the same when it was clear my son had additional needs. As time went on though what felt totally alien became normal life. I do things differently to many other parents but for me it is normal. We have had to implement alternative communication methods, others comment on how hard that must be but frankly it becomes 100% normal very quickly. It doesn't feel like any special effort these days.

Getting limited answers helped to an extent however no one can tell you how things will develop. That takes time and you learn and adapt as you need to. It's certainly not easy at times but every small victory feels like a huge mountain we've overcome.

One thing I would tell myself back then is it's not your fault and he will be okay. He absolutely is okay, he's a lovely young man. You can't control what will happen so there's no point worrying about it. Deal with the day to day, that's more than enough.

Just a little update to say we have got in with our preferred private speech therapist starting up after Easter which is great and and a SEND meeting with the council and nursery.

Potty training has been awful, he's just holding wee. It's only been 2 days but we are not even getting a glimmer of progress. He stops mid week if we put him on the potty and will not go. But stopping I just feel a bit of a failure.

We still have 18ish months till school so I know we have time but there's so much about saying if you start after 3 or stop/start then you are doomed - not helpful!

Ideal world (yes I know!) I'd just love a crystal ball to know he's going to be ok

How have you found potty training? Have you had to power through or paused and restarted?
It's hard when he can't tell me what it is that's the problem

We are nowhere near potty trained! Starting school in September.
We had our nursery parents evening recently and they told me they are encouraging him to sit on their toilets and he’s complying very well but still hasn’t actually done anything in the toilet. We’re doing the same at home but he’s still unable to tell us when he needs to go. Spoke to the health visitor services and they suggested to just keep getting him to sit on the toilet and eventually he’ll get it. It’s such a worry.

@Melody98 good luck. Keep in touch with how you're getting on. I am thinking of you. Are you using nappies between tries on the potty

We've been trying over here the last couple of days but he's actively holding it whenever I put him on the potty.

I know we didn't try for long but we could see he wasn't ready so decided to pause. I really didn't want to quit and think me and my husband have both ended up in tears today.

Thank you, I just keep reminding myself he will go one day. It will happen. We are in pull ups because leaving him in pants wasn’t working for us, he wasn’t phased by the feeling of being wet and clearing up mess constantly off the floor was making us all miserable.
I totally agree with you pausing for now, you have time. Pick it up another time. I have full faith that when they’re ready, it will click and we won’t find it so stressful.

@Melody98 that makes sense.

I need to get to that point of trusting the process. Feels all so raw at the moment, all I seem to do is cry and I can't switch that off!