Child (Boy) with speech delay at 4

[Martin1983]

HI,

Im posting here for advice, positive stores, anecdotes and find out what other parents in similar situations.
I’m the father of a 4-and-a-half-year-old boy. He was born in January 2020; I recall being in the hospital when I first heard about Covid and within a couple of months we were all on lockdown and he spent the first two years of his life with very little social interaction. I say this as this may be a contributing factor to the issue we have today. He as born 6 weeks prem. Many of his development milstones were normal - aside from speech.
He is now 4 1/2 and only in the last 6 months he has started to communicate with us verbally. He now asks for things and has very short conversations with us and his sister. As an example, this week has said to his sister “come on Her name lets go build a house” that was the largest sentence we have heard him say.
Despite what I just noted, his vocabulary has been quite large for the last year or so. But he does not use this vocabulary to communicate with us, if we get picture book out and point to things, he can name nearly everything.
In addition, his reading skills are advanced, and he loves books. One time he read a book to us, we don’t know if he has figured out how to read or if he is just memorizing the story from us reading it to him.
He knows his alphabet, he can count to 20, when we take the elevator, we can ask him to press a particular floor and he will.
He does like to socialize a little bit; he doesn’t converse much with other kids but we can tell he likes to socialize. When family members call over he loves it and crys when they leave.
His motor skills are quite good, he has a balance bike and scooter and is very good on them. The only issue is he is not very danger aware, and we have to be careful he doesn’t go out in front a car. So going anywhere on the bike or scooter can be quite stressful. But things are getting better, only in the last month or so,
In general, his behavior is not good, he doesn’t listen, he likes to throw things over are garden wall in our neighbors. He even took off his own clothes and threw them over the wall. Which was quite an embarrassing conversation for me when I had to call into my neighbors and fetch them.
He does respond to his own name and is getting better are following direction – again only in the last couple of months.
He shows some autistic traits, he like to body rock on the couch when he is tired, he will only every do it if he is on a couch (of something soft) that allows him to do it. In the last coupe of weeks he is occasionally waving one finger in the air and humming a tune, we think this is from a YouTube video he loves of someone drawing (we very rarely give him YouTube). He doesn’t do this stimming that much, its only if he is not occupied. If he is out and about or engaged in something he doesn’t stim. He does have some sensory issues, but they are mild, we once took a flight with him and he got very upset on the flight. Also hates buses and elevators that are glass – but I guess these things are somewhat understandable for a child.
We have engaged every type of doctor and specialist we can. He is on the list for a full multidisciplinary assessment, but unfortunately where I live (Ireland) very long. We have just started a virtual SLT service, which was good but it mainly focused on the parents as he didn’t really engage with the laptop. We will be starting in-person SLT next month. One of the first things the SLT recommended was OT – im currently trying find an OT we can attend.
Myself and my wife are very worried about him, it occupies our mind nearly 100% of the time. Nearly every time we speak the first question will be about our son. We don’t have a great support network/people to talk to about this issue. The most engaged person is my wifes mother who just loves him to death and doesn’t think there is much wrong with him.
I want to repeat/highlight we are very aware of the need for early intervention. We are trying everything to get him assessed/support. We have seen two doctors many times, but neither are specialists they are were just the public health doctor in are area and our family GP. I have engaged a Lawyer to try and get him up the waiting list as there is legislation in our country about the lead times to get him support. So in summary we are doing everything we can on this front. We have an appointment to see a pediatrician in two months – this will be the first pediatrician to see him. But this is a once off appointment. We really need multidisciplinary help.

We would like to know what the outcomes are like for this type of therapy? Has anyone experienced similar and are now further along the journey?

My son is 3.5, very severe language delays and we're in England. I'm afraid generally on the NHS therapies are very limited, we waited 18 months and got 2 hours speech therapy. we now have to wait a couple of months for a reassessment to find out if we can have another 2 hours but there's a chance we won't get them yet. we can't get sensory OT on the NHS in our area, but if you find one then you ideally want one specialised in sensory integration. Look into sensory diets online to get a starting point, as there's a lot you can try yourself.

In total he's been seen by 3 different SLTs, NHS and private and the general consensus from them and from other parents I've spoken to, there really isn't a predictor of what outcomes will come from therapies, we've been told he may not make a lot more progress in speech or he could suddenly have age typical speech one day.

@Martin1983 I'm in Ireland. There is a process where you can complain if your Assessment of Need hasn't been dealt with within 6 months. If you ring your local AON officer then they can give you and idea of where you are on the list. The AON recommends services. One of them could be OT and or an Autism assessment. First step is to fill out the AON and if that's fine then ring them to see what's happening.
If he needs help in school, he will not get it without a report from assessments.
You can self refer to your local CDNT. Again, Google your local one and request the forms.

@Martin1983 Please complete this form if you wish to submit a complaint in relation to an Assessment of Need.
(if you have any difficulties submitting this form please email [email protected])

^www2.hse.ie/services/forms/aon-complaints-office/assessment-of-need-complaints-form.html^

Yea I've done that. There is no legislation to force the HSE to respond to the complaint within a certain time. I believe I will hear back about my complaint in the next month. Which is 4 months after I logged it.

I've also referred him to the CDNT. Waiting lists for CDNT are minimum 2 years. He has been on this waiting list for 1 years already. Honestly I've done everything to get him on every list.

@Martin1983 If you can afford 150e , Gareth Noble is a recommended solicitor who deals with AON complaints. He essentially acts on your behalf and enforces the law. The HSE are ordered to complete the assessment within 12 weeks. It's is your legal right.
He works for Kodlyons solicitors.

I have a solicitor engaged. Thanks for the feedback. Have you been through the process yourself?

@Martin1983 I'm waiting for a year. I went private in the meantime. It gets you a diagnosis. You are still waiting for services - private or public. Unfortunately.

I am on the list to go private with The Childrens clinic. Its a lot of money and I’m not sure the benefit without the therapy services. we will still go ahead privately if the HSE don’t offer us something in the meantime. I spoke with the solicitor about claiming back private fees from the HSE - he said it is possible.

@Martin1983 the benefit is help in school and access to resources in school that only come with a diagnosis. It'll also promote understanding.