Feeling lost and alone

[Deccaa]

Hi

Have a daughter (24 months) recently diagnosed with speech delay. It's been a tough time for a while - v. high risk difficult pregnancy and birth, and a NICU stay. My anxiety about her development has always been sky high.

I knew there was something wrong with her speech for ages, so it isn't a surprise there is a delay. I am just really really sad and worried though. I feel ashamed because this has to be my fault. I'm scared about what her life will look like and what this all means for the future. And I'm really struggling to see any joy in life because all I think about is her speech. I have very little going for me (ugly, fat, weird, no talents or skills). The one thing I thought I could usefully pass on to my child was my academic abilities - which I obviously have not.

I'm currently actively avoiding anyone I know who has a child because I can't bear to hear or see other children who don't have any problems because it makes me so so sad for my daughter. I feel very alone. I'm also just bitterly jealous and angry at the hand that life has dealt me over the last 3 years.

I'm posting here, in the hope for some wisdom and help in ways to make this feel a little more bearable. I know I have to be ok with it. I know I have to find a way to find joy and celebrate who my daughter is but rn everything feels utterly miserable

any advice gratefully received (I already take meds for mental health, and see a therapist. I'm doing all the 'right' things. nothing works).

Sending you love. This is hard. How is her speech? Does she have any words and, whether she does or not, is she communicating her needs at all?

I think 24 months is a time when speech is still very likely to come naturally, my second son is 22 months and only has a couple of infrequent words but is doing a lot of communicating, I suppose.

Have they said what the plan is? To see a SALT (speech and language therapist)? Or play therapy? Portage? Sorry to bombard you with questions, just trying to understand the specific concerns and how they think they may target them.

Have hope. You are not useless nor any of the negative things you've attributed to yourself and I'm sure your knowledge and academics are definitely going to help her be and do everything she can, you may just need some professional support to do and give direction to that.

Sending you love, my dd had a 6 week spell in scbu, difficult pregnancy.
Twin pregnancy ds came home after 26 days, if they had been born earlier they would've ended up in picu, I found the machines going off around us difficult to cope with at the beginning. Don't think anyone is prepared for preterm babies.
I also knew dd had a problem retaining information and her speech.
Nursery school said I was being neurotic, but having an older child as well I knew. Eventually they agreed that she had a problem.
Second portage, play therapy. Hopefully your get to see nhs speech and language soon, think they had group sessions as well as individual sessions. But that was around 20 years ago now and depends on each area. Do you have a home start volunteer. They offer support for around 3 hours a week, the lady I had was amazing. Still see her around, even came with me for hospital appointments if my hubby was at work.
They were both under paediatricians development and normal one who dealt with medical needs.
Ds for 3 years, dd until 15/16. If she needs help would need to see Dr and see adult development doctor.??
Dd will be 22 next month and my anxiety is still high,

Another one recommending Portage and play therapy if they aren’t already involved.

This isn’t your fault. As difficult as it is, beating yourself up with thoughts like that only serves to punish yourself.

Contacting Home Start to see whether they can support you may be helpful. Scope offer mentoring to parents that may help you, too.

You were me back in 2017. I also had a high risk pregnancy, terrible birth and awful PND that set in immediately afterwards and hung around for several years (way past when it is supposed to). DD was a miracle baby after years of sub/infertility and having to go through IVF. I felt a complete failure. I was full of self loathing and then DD started to show signs of problems with her development: speech not progressing as it should, almost no receptive speech/understanding and no interest in her peers or even her environment. It was a brutal, horrendous time and I struggled to see any kind of future for her and for me.

But there is hope! DD started attending nursery and her speech immediately started to improve. She started labelling everything almost straightaway, then speaking in two-three word phrases and then the sentences came when she was around 3.5. By the time she was 4.5 she was fully conversational. I won’t sugar coat it, during all this time and up to now she had/has other signs of special needs and was recently diagnosed with ADHD, plus I am certain will get an ASD diagnosis at some point. However, she and our lives are a world away from what they were a few years ago. She now can’t stop talking, has a couple of actual friends at school (from not being interested in peers at all until she was 5) and is catching up academically. I feel confident that with the right support she will continue to make big strides and have a bright future ahead of her, even if it isn’t the one I might have dreamed of when I was pregnant with her.

Is your DD currently receiving any help/intervention as I wasn’t clear on this from your post? Does she attend a nursery/preschool/play group? If it is financially viable for you I would enroll her for at least a couple of mornings at one of these - this was a game changer for us and speech, as although my DD was referred to SALT immediately after her speech delay was diagnosed they were next to useless and I couldn’t afford private speech therapy.

Sending you a huge hug, things can and WILL get better.

thanks. It’s difficult to know tbh. She has very few words. She makes a great deal of sound and ‘babbling’ and is very expressive (according to nursery and really anyone who meets her says how good she is at communicating). Whether they’re saying that because it’s obvious she doesn’t have speech I don’t know.

she seems to understand what’s going on and can follow instructions, do matching games and puzzles, and has quite a few signs (eg hungry thirsty etc). However I also read on some American website that parents who think their children understand are normally wrong so…

we’ve been referred for early SALT help and been bombarded with online help about all the million things we should be doing to help her speak which has just felt to me like I’m being told it’s my fault. I just feel like their can’t be any joy because we are strictly having to adhere to all these speech play and input things

I struggle to cope with uncertainty. If someone could say to me yes your child has a disability or whatever then I could understand and know what I’m dealing with but it’s just always vague and false reassurances and then people telling w to stop being anxious.

Thank you 😘
our experiences sounds very similar of pregnancy and birth - my child is also an absolute miracle / after loss and sub fertility. im in such a dark place and I feel like I’ve been here since she was born. I keep thinking things will get better but they just aren’t.

she goes to nursery and has done for a few months. She’s picked up signing from nursery but no speech. She just doesn’t copy speech. Nursery have said they don’t have any concerns about her and that she appears ‘normal’ (I know what a thing to say) and just ‘fits in’.

part of me thinks if it could just be me and her, and all the online developmental milestones, and everyone boasting about how their 3 year old can speak 3 languages etc could shut up, i might be ok. But I just feel bombarded by comparison and anxiety that she isn’t where she’s supposed to be.

how do you cope fitting in with other parents? Sorry if that’s a really weird question but I dont have confidence to text let alone see any of my mum friends

Thank you what is portage?

Thank you.

can I ask how your daughter is now?

Portage provide support to pre-school-aged children. However, some areas no longer provide Portage support to DC who attend nursery.

If the nursery need more funding to provide support, they could look at Early Years Inclusion Funding - in some areas it is available to 2 year olds, but in others it isn’t available until 3. They can also request advice from the Area SENCO if necessary. You can also request an EHCNA if needed.

Sorry I didn't mean to reply to everyone's messages like that..I somehow thought it would be different but I've not really used MN before.

I tended to have limited interaction with other parents, they either boasting about how there kids had photographic memory or just didn't unsterstand dd problems.
Did different mother and toddler groups, parents who already knew me were OK, others I felt judged my parenting skills. Or that's how it felt to me.
Mine didn't start nursery school until 3, so only had to pay for 2 terms until they got the 3yr old funding. Couldnt believe how much it had gone up In price since my eldest had been there.
Dd didn't get any input of salt from nursery school until the year before starting school, as they worked on the older ones 1st.
Salt was arranged by devopment paediatricians.
Can't remember how many words dd could say believe how much it had at 2, definitely didn't have the understanding of language.ie over/ under.etc.
We also got bombarded with things to do with her, we did it in small bursts.
Though I read somewhere that because of covid lockdowns there's a lot of children with speech development delay. So your not alone.
Try and make time for yourself, though when mine were at nursery school that's when I went food shopping and tried the house up.
Still has a bit of language disorder, but can communicate well around people she knows well.

Came on well at special school, where salt was incorporated into the classes, rather than enormous 1 to 1 sessions.
Still needs phonics to help with her spelling, no good at times tables.etc
But a lot is down to retaining information.
Nursery school used to work on colours, numbers and letters. She'd learn them and then just as quick forgot it.
We didn't get any help from portage as that wasn't talked about until 6/12 months before she started primary school.
We weren't computer savy then.