child development delay

[danxiaor]

Hi,

Our ds is development delayed at 21 months. He has seen few pediatricians. We are pushing to get him to see physio, OT and speech and language therapist.

I'm wondering if anyone had similar experiences and sought after any doctors that have more experiences with early intervention and diagnosis.

Many thanks

At 21 months my ds was sitting up, commando crawling a little and said Mama. He is now 9yrs and has a moderate LD. I would say that over the years I have learnt that you have to be a bit of a fighter to access the services that your child requires. I was a teacher, which people assumed would make things easier but I think it would have served me better to be a lawyer. The best help to me has been to surround myself with people who have children without SN. I have joined local support groups, along with facebook groups (there is a Facebook group for global developmental delay) and I have learnt so much from them, in fact much more than I have from most professionals. There is so much I could say to you 😆 it almost put me off replying but I remember posting similar questions to yourself when my ds was little so if there is anything in particular I can help you with just ask x

Thank you so much for taking your time to reply Hedgyhoggy. The fb idea is brilliant, I will look into that!

At 21 months he can crawl on hands and knees a little, can cruise against furniture for a few steps, keen to walk if I hold him, only word with meaning is Mama.

I have no diagnosis except GDD. The pediatricians only see him every six months. I want early intervention and find out what's wrong with him. I'm doing my research to find the best doctors who are more experienced in this area, but not many doctor names came up and therefore this post.

Also I am thinking applying a statement of health plan for him through council so he can have additional resources. Do you have experience in this?

Thanks again for your help.

(Do you mind if I ask you what is LD?)

LD is learning disability, GDD usually changes to this when the delay continues. In my experience the paediatrician just takes notes and refers onto other services so is useful to a point. Ds received his statement at aged 4, now called an ehcp (education, health and care plan). Have you the early years assessment team involved, from the Local Authority (LA). These are useful in generating evidence that additional support is required when ds comes to education settings and also in gaining your ehcp. Our LA is pretty awful. They provide no SALT to children whose level of communication is appropriate to‘deemed’ developmental level. Did have some but now have private. Services I would want referring to would be SALT (Speech and Language Therapy) OCcupational therapy (OT), Physio (perhaps if there is hyper mobility) and early years portage.

DS has his physio through local community team and I'm trying to get speech and language and OT. I've been referred by various people, these are all through NHS not local authority. And we are paying privately for additional physio. Up until this point there is no LA involvement at all.

I see a huge difference after we increase the amount of physio he gets privately (before private physio which is two weeks ago he can barely stand and only commando crawl if I push him).

Do you mind if I ask what kind of differences does your DS have in comparison to his classmate? I'm still trying to come to terms with my DS's differences and trying to make out what it would be like in the next few years.

Again, thank you so much for your kind reply.

So he is only just 9 and working at a 4 year old level. He has been at a small, rural mainstream school with full time 1 to 1 support and 2 years retained (but that is generally unheard of) but in September will be joining a Special School. He is obviously very academically behind but is quite sociable. He has been referred for autism assessment (asd) but I think it will be difficult in his case to ascertain whether it is asd or his learning disability, though he does have traits. Thinking back to your stage I wanted to know why? and what he would be like in the future? In our case we don’t know why and that doesn’t really bother me now just as long as he gets the support he needs. In terms of what the future holds, no one can really tell you and they are all so different it isn’t really that helpful to compare to others (though I am still always interested).