I totally understand how you feel, My daughter was diagnosed with GDD in September after she was very late in all her milestones. She started walking just before she was 2 and we realised that she wasn’t walking correctly. We went to the GP and Orthopedist before being referred to a Pediatrician. It took another year and Katie starting school (she started in September, she is 4 turning 5 next month) before she was finally diagnosed.
Like you I felt really gutted, worried for the future, relieved, I still do at times all that I can say is its taken us a long time to get the support we need, I am not sure if it is just the paediatrician/school or whether this is normal nationwide all what I can say is some advice another SEN mum said to me which is “you are your child’s advocate and if you don’t push for the support no one else will.”
Chase Doctors!! especially if they promise referrals to speech and language or Physio this is a big one for us as we were promised referrals to both and we are still waiting…
Make sure SEN in school are involved and sit down and make a plan in what help they are going to give your son (there is a name for this plan but I can’t remember what it is called) if the plan isn’t working or child needs more support talk about getting an EHCP.
There are some brilliant Facebook Groups, not sure if I am allowed to post the names of these on here, one is for Global Delay and is a UK group and there are some worldwide ones I am part of too. I also have a local charity near us that can help with EHCP process and if necessary Disability Living Allowance…Not sure if there is something similar near you. Also on my county website (Hertfordshire) there is something called the Local Offer which lists all the SEN services near us not sure if your area has something similar as well.
It seems like its a long road really and we are only at the beginning…
Hope some of my advice has helped
Wishing you all the best xxx