Paediatrician appt tomorrow - what to expect?

[Derbyshirelady]

Our DS just turned 3. We adopted him at 10 months, his birth mum has learning difficulties and he is showing signs of delay not just with speech but gross and fine motor. It breaks our hearts seeing him at pre school as he is often on the sidelines but the staff and his key worker are doing great work improving his confidence. He’s such a content, happy little chap.

We filled in many questionnaires before this appointment came through - just wondered what to expect tomorrow. We really want to know how best we can help him.

Also wondering how you as parents dealt with the unknown, pre-diagnosis. We feel like we are in limbo and have waited 8 months for this appt.

TIA

Might be a bit late now, but I always advise giving it some thought whilst you are on the waiting list, and writing down all your concerns - think about different areas - sleeping / eating / speech / cognition / play skills / social skills / fine motor skills / gross motor skills / interaction / fears.

Always try to 'quantify' what you can
eg 'His bed time is at 7 but it takes an hour before we cn leave him, then he wakes at {inserts time} and....' etc rather than 'good sleeper' or 'bad sleeper'
eg 'he has about 50 words that are recognisable and consistent but the pronunciation is such that people who aren't familiar with him can't always understand him. He doesn't usually put 2 or more words together. He doesn't ask questions but will answer them. He can't talk about something that isn't visable to him. He seems to understand a lot more than he says - can follow a routine instruction such as 'wash your hands now, for dinner'............. rather than 'we are worried he is behind in his speech'

Also a really helpful thing (again, too late now, but, if someone else might benefit) is to ask the Nursery to either fill in a developmental profile or write out a list of bullet points about his development. they are used to dozens of other dc of that age, and can see where he is doing well, and where he is struggling.

Paediatric appts do vary from one area to another. If you live near me, you will have about 40 - 45mins to let the Paed know what you know about his pre-natal, his birth and very early experiences. They will ask you about milestones. they will ask you what is worrying you. They will often ask you what Nursery think.

They then decide what to do next - often will refer to people such as SaLT, OT, physio, audiology, etc for specialist assessment. Sometimes will adopt a 'wait and see' and have you back in 6 months. For some children it will be scans or blood tests or genetic testing. Obviously the more you know about pre-adoption history, the bigger clues that will help in determining what it is that is causing the delays. Sometimes it is nature (sometimes a 'condition' they can uncover, and sometimes not - might be genetic, and might not- and sometimes it is what has happened to the child prior to coming to you. Often there is a combination.

Re, the 'unknown', many, many parents find knowing what they are dealing with, a lot easier than the 'waiting' (same as adults waiting fro tests for themselves).

Ultimately, he is still the same lovely little chap he is now though.

Thanks so much! We have got a lot written down and pre school have done reports and his key worker offered to come with us as he’s quite different there to at home (he does more at home).

Really appreciate the info. We adore our little guy. I think it’s when pre school raise concerns that it hits home, yesterday they used the phrase “the gap is widening” in relation to his peers so this appointment is timely.

How did it go @Derbyshirelady?

Hi everyone - an emotional week! The appointment was great, nearly two hours, the paediatrician was very reassuring when I was on the verge of tears saying I am never sure if, as a parent, I am doing the right thing for him. She was lovely.
He's got global development delay with some signs of neurological disorder, but too soon to tell what. He's at 18mths in some areas, bottom end of 24 months in others and 36 months (his age) for visual (he matched colour cards really well). She said his perseverance is really good which is a good skill apparently .

He'll now have blood tests to check for anything genetic, we've got a speech and language referral in a couple of weeks and unless anything significant shows up from either of those we'll see the paediatrician again in 6 months. Pre school are now applying for funding for 1:1 for him. We will contact the local authority about any other funding or support we can get.

ilovedotcotton we knew there were issues at his two year health visitor check, he scored low on most parts of the questionnaire. He walked at 19 months but very wobbly with a funny gait, so we got referred to orthopaedics but there's nothing structurally wrong. That is much improved now, but he's not confident on uneven ground or snow, soft play is difficult as other kids are crashing around and he's taking his time and only really just started climbing on stuff. That consultant told us to see a paediatrician based on other stuff we told him. He's only just started telling us when he's done a poo, appears to be nowhere near potty training. We're using makaton now to help with communication, but lots more words have come in the last month or so.

So we are trying to now focus on getting him the help he needs and supporting him. Not sure who's supporting us! Mainly wine and cake. It's good to have some progress, it has helped me emotionally. I am going to try and find a support group if they exist, think I'd benefit from shared experiences.

Thanks all for your input. We're on the journey! Dot - would be good to hear how your DS is getting on.

@derbyshirelady
I’m sorry it’s been a difficult week. It’s good at least that professionals are involved and you can start to get some additional suppprt and funding. Great too that the paediatrician was thorough and listened to you.

Does the breakdown of his current skills’ level feel beneficial? I know that I have a tendency to focus on and worry about the things DS can’t do, but actually, it’s just as important to identify what he can do. For example, the fact that he is good at visual tasks could be helpful for developing other skills.

If there is a genetic disorder, early identification will also, hopefully, help. My DS has a half sibling who has a genetic disorder, but my son doesn’t have it. I know that for him, the test took a really long time so I hope it’s a little bit faster for you. It’s hard living in limbo.

My son seems doing really well in most areas so far. At 12 months he had very thorough assessment with a paediatrician. He was assessed as being ahead in all areas, with particularly good understanding and communication (18 months level). However, his gross motor skills have always been behind. It interests me that you mention this. He is now 20 months and will take a few steps on his own, but not more than that. I’m not sure if this is confidence, though I suppose it must be because we have seen him walk a little unaided. When he walks with me holding his hand, he is sometimes very steady, but other times feels a wobbly. There could be a perfectly good reason for this delay/late walking - he was in a foster home with four other foster kids, and though the foster parents were amazing in so many ways, they said themselves that he spent the first eight months of his life largely sitting in a chair. He never went on his tummy, spent very very little time on the floor etc. so he never had a chance to build up the strength he needed. However, I know that late walking can be linked with learning disabilities, and I worry about this all the time.

Apart from poor gross motor skills, he still seems to be doing well in all other areas. Nursery always comments that he is a very good communicator. In terms of speech, I think he’s probably average (about 30-35 words, but no sentences yet) but he has picked up loads of Makaton from watching Sonething Special and uses it really well. I think it really helps with his ability to communicate - and I’m hoping this lead to fewer terrible twos tantrums!

However, I find it so hard not to worry about his development. Sometimes I worry that I miss the progress he makes because I’m so fixated on his late walking, and things that might happen in the future. Does that make any sense?