My ds has developmental delays, though it is unclear to what extent yet, as he is young enough (20 months), that what is going on with him now may not be predective of the future. Still, the delays have increased as he has gotten older, not decreased.
His birthparents are both developmentally delayed, and both have IQs that are in the range labeled as "mild mental retardation." His immediate maternal birth family members (his half-brother, his mother) have neurological, mental health, and other special needs as well.
On his birthmothers side, there is an extended family history of developmental delays and low IQs (unknown diagnosis and origins), along with other neurological impairments, even though there are also plenty of folks in the family who have average and above average IQs and no delays or neurological difficulties. On his birthfather's side, extended family members that I have met seem to have average IQs, other than his birthfather, though they did say that one relative had a degenerative brain condition that wasn't diagnosed until after his death.
What is knawing at me is that ds, his half-brother, and their birthmother all have periods of doing really well, during which time they learn quite a bit, seem really "present," and are able to function fairly well (note: "fairly well" for the birthmother is things like, being able to call the transportation program for rides for where she needs to go or being able to keep track of why she went somewhere...not things like being able to live independently, etc.). Then, suddenly, they regress and lose their ability to do the things they had been able to do, lose what they have learned, and so forth.
It is literally two steps forward and 1.5 or 2 steps backward. Things like, for ds, picking up three or four new words or signs, understanding more of what we say, being able to problem solve with toys, being able to point out a couple parts of his face (nose or eyes), and so on, for a period anywhere from half a day to several days long. And then, it is all gone. He will stop using the words he picked up (he has dropped all kinds of words or signs from "kitty" to "mama" to "all done"...and a couple dozen in between). He will go back to seemingly not understanding the vast majority of things we will say. We'll ask him to point to a part of his face that he had learned, like his nose, and he'll point to his eye or mouth or cheek if he points at all. He will be unable to use some toys that he was able to use pretty competently during his period of doing well (stacking rings, or whatever). It is stuff like that.
With all three of them: ds, his half-brother, and their birthmother, no answers have ever turned up no matter what has been tried. I think ds' half-brother even had genetic testing, though I don't know for sure. They have all had therapeutic services. ds' birthmother has pretty much had special ed services almost her whole life. ds' half-brother and birthmother have both had various medications at different times. I have tried all kinds of things to help ds, including some of the more "alternative" things from elimination diet to check for allergies, to fish oil supplements, to working on healing his gut, to cranio-sacral therapy, and the list just goes on from there.
But I just can't shake my mama gut that is telling me that ds has shown that he can learn, and that there is something else going on, something that interferes with him retaining his learnings. I just keep thinking there has to be some genetic factor, some chromosomal change, here that could be identified to help us better understand these special needs.
I guess I am feeling like "developmental delays" is about as useful of a diagnosis as "vertigo." Vertigo basically means dizziness. It is more a description of the condition than it is a specific condition in and of itself, you know what I mean?
Am I alone in feeling this way? Where do I go from here? Can someone tell me about genetic testing (though since ds is adopted, our information about his family can be a little bit vague...however, we do have contact with some birthfamily members and will be able to track down whatever they know)? What other ways are there to approach this?
I'm pro-adoption reform, but not anti-adoption.