HI C.,
My heart goes out to you! My son was born w/ a cleft lip/palate, so we knew he was going to need speech therapy as soon as they would allow. I live in MO so he automatically qualified for speech therapy due to the condition. He started at the age of 1 he got an hour of therapy a week and after time I asked for it to be increased to 2 times a week. At the age of 3 First Steps is over, so then it turns over to the school district. I'm not that familiar with your son's diagnosis, but have heard of it(long story), so not sure if there may be other possible delays. If there is First steps handles a variety of specialties like feeding therapy, physical therapy, etc. Also, my son has gotten tubes in his ears twice and I know that makes a big difference if they are having trouble hearing that will effect their speech, so I would do it if the doctor advises it to be done. I wish you the best, follow your heart and mother's intuition. I understand wanting to reach out to other families that have similar child that can help support you and may answer some of the unknown questions. Plus, it just makes you feel like you are not the only one facing this. I was also concerned about how other children will treat him and how to handle those situations. I fortunately, did meet up with families that have children with the cleft lip/palate, but I've ended up being the one telling them what to expect with surgeries, etc. I've drawn a lot of strength by doing tons of research on the internet, supporting others in the same place. Plus knowing that I'm not alone and my child is beautiful and truly a gift!
R.