Been told “let’s wait and see”

[KissyThief]

Hi so I’m quite concerned about my sons development and have been for the past year. And even more so after reading other people’s experience on here!

My lo will 2 in a few weeks and honestly he has more in common with his cousin who is a year younger than him than his peers. He doesn’t walk, talk (babbles a lot), play, wave, point- the list goes on. For the past year the HV has literally been let’s wait and see but she did recommend get a referral to the hospital. The consultant there is lovely and we’ve seen her twice and she hasn’t been overly negative because his gross motor skills have developed. So we’ve been told we’ll review again in few months so “he can really impress me”.

To complicate things a bit further I have depression and this has really tapped into my anxiety and my partner refuses to talk to me and listen to my concerns because he thinks we should listen to the professionals.

Any advice would be appreciated

Not sure I can offer much advice but I'm in a similar situation, waiting for an assessment and have been reassured all seems ok, but I know something's not right. I find it hard not knowing. It seems you have to push for help and it at a snail's pace.

Have you investigated what support is out there in your LA? For example, my health visitor wouldn't refer us to salt but I realised I could self refer without any diagnosis. Could gp refer for physio or ot? Google your local offer, I think councils have to put it on their website.

Sounds like your consultant isn't to worried? its super hard not to worry though when they are late developing, did your consultant say anything about global delay?

The consultant keeps mentioning handing over to a community consultant and doing a formal assessment of his strengths and weaknesses. She said on both appointments that it was reassuring that he’s gained skills. They haven’t said anything about global developmental delay but the health visitor did a SOGS assessment at 18m and it seems to me that they could of given him a diagnosis because in most of his skills he’s at a 12 month level and in his cognitive and visual he’s at an 8 month level. I showed the consultant the results and she wanted it photocopied and to discuss it with the health visitor.

I suppose he’ll get more support when he goes to nursery in a few weeks and hopefully they’ll see more of what I’m worried about rather to trying to just explain it. It’s just really stressful. I looked up the local offer stuff late last night and there was so many abbreviations that I was completely confused!

That sounds positive the consultant is pleased he's gaining skills. Have they referred to community paediatrician already or do you have another hospital appointment lined up? It could be helpful to chase up that referral as my understanding is the community team will do a very thorough assessment with different specialists and observe him, maybe at nursery too, to get to the bottom of what's going on and how best to support him. Once that's in place it will hopefully be less confusing and worrying. It is a rollercoaster of emotions, the not knowing what's happening.

You're right nursery will be able to get to know him and help. They might be able to access support, try to meet with the SENCO as they'll probably have advice.

Self diagnosis is a mine field. You must try and be patient. Please don’t google stuff you’ll just upset yourself. Just try and enjoy him and encourage his learning through play.

It sounds like you’ve seen a general paediatrician? I’d suggest pushing for the community paeds consultant to see him.

He’s not yet two and any doctor has to be certain of a diagnosis before they make one. For something like ASD for instance (I’m not saying at all that this is what he has) they have to be sure that any issues are significant and enduring and are not grown out of. Likewise other conditions.

I’m sure it’s frustrating as you want answers but you may have to be patient for a while

I am going to assert myself next time if not a lot has changed. It’s so hard to live life and do the right things to help him by myself. The HV suggested makaton which is great because he loves mr tumble and gave us some leaflets with suggestions of ways to help him develop.

We also a little baby who is 4 months. Our ds2 already is so much more alert and engaged than ds1.

We don’t have another appointment with the consultant yet. Yes I think it is a general pdoc. I understand there is some degree of patience required and I love seeing him do something small that amazes me. Like the other day he sat in his highchair with a bib without screaming! The manager of the nursery seems pretty good so I hope there will be a sense of movement soon.

Have you spoken to the nursery about his issues? It strikes me that he’s going to need a lot of support there.

Yeah we’ve exchanged emails and we’re going to visit in a couple of weeks when term starts. The health visitor has also offered to come too so she can discuss a plan for his development