I am often asked what’s wrong with G or what is causing her delays. In a nutshell…
WE. DON’T. KNOW.
And that’s a toughie. Not knowing sucks. I’ve read on message boards that many parents say the not knowing period, where you know something is wrong, but not what, was the hardest part. When you know, you can act. You can say okay, this is what it is, we are going to deal with this and figure out where we go from here. You are no longer investing time into trying to figure out the why, and instead focusing on the best ways to help. You can connect with others who have been and are on the same road and hopefully find a sense of community and support. But until you know, you are at the intersection of Why and What If…
We are treating the delays with therapy, so it’s not critical to know at this point, but obviously we could better help her if we had a “why”. Apparently it’s hard to pin those down before age two, and some who do find that the diagnosis wasn’t accurate and is later change, which is why I haven’t been beating down doors for the why. Right now she has the term “global developmental delay” attached to her, but that is more about symptoms (being delayed) than a cause. She’s “severely” delayed in speech and communication. She’s moderately delayed with both social and cognitive skills. She has some fine motor issues, but her gross motor skills, I’m going to say advanced. The muscles that help one climb, those babies work JUST fine. 🙂
I am often asked what our doctor says, and that’s an interesting question. At least for us (and a number of people I’ve spoken to), our pediatrician isn’t very involved with the delays. They refer you to early intervention, who sends out someone to evaluate, and you head down another path. We had a developmental specialist and speech therapist each evaluate G. It’s actually quite removed and separate from our doctor (again, at least for us – and I should say we’ve had our pediatrician for eight years and I love her). G has been very healthy thankfully, so there really isn’t much that is under the pediatrician’s territory.
We have a case worker through DDD, who we really only interact with when red tape administrative issues need addressing. Our resource is really just our speech therapist. We are working on getting to a neurologist, which hopefully will put us on the path to figure out what is going on. Unfortunately after a week of trying to get a hold of someone at the one we were referred to, I have found that they no longer see young children. So a message has been left with our ped to get a referral to someone else.
Because G is adopted, I would think they would be pretty open minded at looking at her, as we don’t have the full family history the way we would with our older daughter. While I do have a lot of info, sometimes I think giving doctor’s a blank slate with no pre-concieved ideas makes them look at things a bit differently, not so quick to rule things in or out.
Until we get more information, we have a list of the issues that are the most likely to be what we are dealing with. They are as follows…
It could be any one of those. It could be a combination of those. It could be none of those. I think our hope is that the issues are within the first four options. If she has a receptive language issue, it would mean she has trouble understanding. I think of it as going somewhere and not speaking the language – you can’t interact, you can’t make social connections, you don’t understand and you can’t follow directions. You could be a genius, but if you don’t speak the language… So often times children with language disorders will appear to have cognitive issues, but those can be a symptom if you will of the language disorder, and not truly indicative of their cognitive skills. The language issues do not tend to be ones that can be “cured” but indicators are good that with the right therapies, and a lot of work, most kids can eventually catch up somewhat with their peers. They may always need a bit of extra help and therapies and take a bit longer when speaking or understanding what others say, but they can get there.
Cerebral Palsy – I never would have thought of that one, but sure enough you can have a mild form of it and it doesn’t “look” like what you think CP would look like.
Mental Retardation – a hard one to take, and while I do not think that we have accepted it, neither my husband nor I would be completely surprised. I think most people would be surprised to know that often MR isn’t even diagnosed until grade school. There’s the theory that there is a “look” or very obvious signs, and clearly with severe cases there are, but I think moderate to mild isn’t always that obvious. It’s easy to say “no way!” but the reality is quite possible. It is one of the main causes of speech and communication delays.
Chromosome and Genetics Issues – we actually had to go through a genetics eval with our older daughter prior to her pharyngeal flap surgery, to rule out a a syndrome that most children who need that surgery have (22q11 deletion / DiGeorge Syndrome / Velocardiofacial Syndrome). She did not end up having it, but one can go a bit crazy waiting for that answer. I did a lot of researching and probably drove myself mad looking for dysmorphic features that tend to appear with genetic issues, trying to see if I could figure out the puzzle myself while waiting for answers. I did with B, and I do with G. It’s hard not to. You are grasping at straws, looking for glimmers of explanation anywhere you can. Grace was born with some heart issues (which thankfully seem to be resolving themselves) and her birthmother had some, and it’s not uncommon for cardiac issues to be involved when there is a chromosome/genetic issue.
Metabolic Issues – this is the one I’m the least familiar with, though I think most of those are detected in the first few months of life.
Autism Spectrum Disorders – while we do not think this is what she has, I don’t totally rule it out either. Honestly if she were to be on the spectrum, we would probably get much greater coverage through the state for her care and therapies, and there are certainly great support networks out there. It’s not that we don’t want her to have it, it’s just that every therapist, doctor or case worker we have had has said a firm “no”. While not speaking and not gesturing are big red flags, she is so very social and constantly looking for engagement from those around her, that it’s just not the most likely fit.
Brain abnormalities such as agenesis of the corpus callosum – this is new on my radar, and was brought up in the past week by a friend who is a nurse (and has had brain surgery herself, so she probably knows more than most of us) and our speech therapist. As bad as it sounds to be missing a corpus callosum, apparently people live their whole lives without knowing that they are missing, or have a partial one. It’s sort of the superhighway between the right and left brain, and while you can travel without highways, those surface streets are just a bit slower and getting one from point A to point B.
So there is our list of possibilities, though it could be something completely different. I hope that in the next few months we can figure it out. Until than I try and quiet the what if’s in my head, but it’s so hard. Driving to school today, I saw a group of adults from a group home walking to the park. Will she be one of them or will she be one of the kids bouncing out of school when the bell rings? Or will she be the child who comes out with their one on one aide? Or will she be the one who is mainstreamed, with a lot of support services.
Crap like that runs through my head day in and out, no matter how hard I try and stop it. I. DON’T. KNOW. And that’s very hard, especially for someone like me who is an expert at tracking down info and figuring out anything I need to know. I can’t figure this out. I can’t fix it. I can just hope and pray. No matter what, I just wish someone could tell me that she will be happy. She will make friends. She will learn and grow. I turn the light off at night and wonder if she’ll ever talk to us. If she’ll at least be able to communicate with sign language. If she’ll ever walk to her highchair to indicate she’s hungry. Will she stand on a stage, seconds before a dance recital, with the audience in their seats just feet away, and be a part of the circle that the dancers do before the curtains go up? Will she have a BFF? Will she go to college? Will she potty train? Will she go to sleep overs? Will she babysit the class hamster? Will she sit still and let me read her a story, no matter how short, without trying to throw or chew the book and screaming when I do not allow either. Will she stack blocks? Will she make up and sing songs when she thinks nobody is listening? Will I ever call my husband in the middle of the day to say “you’ll never believe what she did (or said) today!” Will we look back and think gee kid, you had us so worried, and look at you now! Will she, will she, will she… ????
All this is always right under the surface, and I fight to keep it back, hold it down, not let it show. While we don’t have deep conversations about it, I know my husband has the same questions and concerns. We just don’t know. I’m not known for being an optimist. I don’t think I’m a pessimist, but I am a realist. I am a plan for the worst and am pleasantly surprised if things turn out better.
I just don’t know what the big future of this little girl holds.