I took Gabriel to the doctor yesterday to talk about some developmental issues. The doctor shared my concerns and after an hour consultation, wants me to take Gabriel to a pediatric neurologist to check to see whether all his issues are being caused by something underlying, like Fragile X.

The doctor said he’s leaning towards ADD and/or OCD. I’m not in a rush to medicate him; I am not sure I will choose to medicate him at all – it would have to be proven to me that he would suffer greatly if he wasn’t medicated before I would even consider it. I am leaning towards getting a “diagnosis” though, so we can get more ‘free’ help through the school district. Anyway, the next step is this neuro appointment, which the pediatrician is in the process of setting up.

In the interest of attracting an expert on his likely-related issues of external hydrocephaly / macrocephaly, sensory integration disorder, motor delays, speech delays and developmental delays (and also for any other parent in the same boat), I am going to post the list of concerns I wrote up to give the doctor yesterday. It’s pretty personal, but I’m more concerned about finding him the best diagnosis and therapy right now. So, here you are (by the way, the doctor really appreciated my doing this, he said. I’m glad, I was afraid I would get an eye-roll):

I thought I’d write some of my concerns about Gabriel on paper, so I won’t forget anything. I hope you don’t mind. (this was written by Gabriel’s mom, Melanie XXXXXXX, on 8/12/08)

Gabriel seems to get “stuck” on certain things. We once mentioned eating his food so he’d grow up into a big, strong man and now he talks about being or becoming a man very frequently. Any time he does anything well or correctly, he says “yeah, I gonna be a man.” We’ve told him repeatedly to stop saying that, that he’s a kid and doesn’t need to worry about being a man yet, but he continues to talk about it very frequently. Once he gets something in his head to obsess about, it’s hard to get it back out. This is just one example.

Whenever we discipline him it turns into a long battle. He can be very sweet and compliant, but some days he decides to be very willful and it turns into a day long battle, with him stomping around with his lip poked out and screaming at us. We do not let disrespect slide – we are a Christian family trying to raise him to be a moral young man. But any and all discipline that we’ve given him over the years has been met with hysterics. Even if we stand him in the corner, he screams and cries hysterically, repeating, BUT I SAID I SORRY! over and over again. What is even more concerning is that whenever he finally stops crying and we try to talk to him about what he did wrong and why he shouldn’t do it again, he truly seems to not understand that he did wrong, even when we explain it to him in the simplest of terms.

One frequent behavioral problem arises from the fact that he thinks everything needs to be a certain way or happen a certain way, and gets upset when anyone deviates from that. He is especially bad with trying to force his sister to do certain things – telling her that she has to put this there or quit doing this or that – and he carries on and on about it, getting very upset if she doesn’t do what he wants done. He prefers to play alone, creating elaborate cities out of blocks and figurines that he lines up very carefully and then acts battle scenes (or whatever) out – and is quite happy to play like this for hours on end. His sister has a strong personality and has succeeded somewhat in getting him to play with her, but he doesn’t always do it happily.

I suspect that he has ADD, but I am NOT a parent who wants to rush to medicate him at all. He frequently doesn’t hear instructions the first or even the third time, even when we call his name first. When we get right in front of his face or take his chin in our hands to finally get his attention, he seems to be coming back from outer space: “what?”

I guess I should back up and tell you that he has been diagnosed with sensory integration disorder and has or has had many issues relating to that. Let me back up even further, though: he was born with external hydrocephaly. The neurologist that diagnosed him at 2 months said he could have motor delays. We first noticed his speech (which I’ve been told could technically be a motor delay since the tongue is a muscle) … he didn’t talk at all until he was over 2 and had terrible problems with texture and gagging for a long time. Today, after much speech therapy, he has improved much but is still pretty far behind his peers speech-wise (he tested a year behind at the last evaluation in November 07), both expressively and receptively. He still has problems saying certain letter sounds, but his speech gets markedly worse when he’s trying to say a longer sentence. I’ve read about verbal apraxia/dyspraxia (what’s the difference? I’m not sure) and don’t know if this could be the case here, but the shoe seems to fit.

Motor-skills wise, he is behind what’s age appropriate in both gross and fine motor skills. He still has trouble holding his pencil properly and tires quickly, but he’s definitely improved. I’m currently trying to work with him on tracing his letters and it’s excruciatingly frustrating for both of us, but I really want to help him learn. One of the main problems here is that he doesn’t like to be corrected. No matter how gently I correct him, he gets upset. I’m at a loss about what else to do about that.

Back to the motor skills, he still has problems getting dressed, going to the bathroom, and buckling himself into the car seat. He can do these things but they are slow and labored. And when he does dress, most of the time his clothes are on either backwards or all twisted, and he doesn’t ever seem to notice. The OT that we went to until recently told me that he doesn’t put his whole body into throwing a ball, among other things. (It’s XXXX if you want to get the records … they told me a doctor had to request it.) He did not potty train until right around his 4th birthday, and still asks me to wipe him when he poops (although I always tell him to do it himself). He still can’t brush his teeth by himself – he just puts the brush in his mouth and wiggles it aimlessly around, not hitting his teeth – even though I’ve showed him many times how to look in the mirror and brush correctly.

I guess one of the other biggest concerns of mine is his general development. He seems to have an awful memory and need really simple step-by-step instructions (given one step at a time) for things that he should be good at doing by now, like brushing his teeth. He doesn’t always remember to put his pants back on after going to the bathroom, for example. And most times when he gets out of the bath (which he still can’t bathe by himself either), I have to specifically tell him to dry himself off, or he will just stand there dripping wet, staring off into space.

Another developmental thing I worry about is that he doesn’t seem to “get” things that seem to be obvious to others. For example, recently, in the church childcare, he came home with rug burns all over him. I questioned him about it and he said that the “big boys beat him up.” Needless to say, I questioned the childcare people at the church, as well as some other (older) kids who were there. Turns out Gabriel was going around giving the boys in the childcare area kisses, and each one, in turn, would tackle him for it. I was certainly mad at the other boys for doing that to him (and the babysitters for not watching them properly) – but I don’t understand why Gabriel didn’t “get” that they didn’t like it. I questioned him about it later, and he didn’t make the connection between the two things – the kissing and getting tackled each time – at all. This is one example, but I’ve seen similar things before, where he just doesn’t seem to have any common sense at all. I am not trying to sound cruel or callous, please believe I love him with all of my heart. I am just really concerned for him and his future and really wonder what I need to do.

I’ve been home-schooling the kids for an hour or two each day for the last two weeks. Gabriel is learning, but can’t seem to follow two-step instructions. I generally spend a lot more time explaining things and working with him than I do with my 3-year-old (I have them working on the same material). Not that I mind or anything, I’m just saying, comparatively, he’s behind.

He is starting into a half-day of preschool on August the 25th, at the suggestion of his speech therapist (this is all through the XXXXXXXX ISD). I had planned to homeschool both him and his sister, but the speech therapist thinks the peer interaction at preschool will help his speech. I am very, very nervous about the whole thing. I don’t want him to get beat up at the school like he did at church – or even made fun of. I know I can’t keep him in a bubble forever, but I don’t want him to grow up having a destroyed self-esteem either. I’m really in turmoil about what to do!

Other behaviors I guess I need to mention: He constantly wipes at his nose with his hand, even though it doesn’t seem to be running. This has made it red and raw on one side, and I can’t seem to get him to stop.

He sometimes walks in small circles when he gets wound up (wild), or gets down on all fours and spins himself around in a circle on the floor. Or sometimes he runs wildly around the house, and he has a real wild look in his eyes. Also, when he gets wound up, he tends to throw his body around, collapsing on either the couch or the floor. The OT told me something about this being sensory-seeking behavior. Other sensory things he avoids, though, like water (he still screams like a baby in the shower) and messes, especially anything messy that he would have to touch. He doesn’t like many food textures, either, and is extremely picky. I have to really struggle to get him to eat much at all, especially anything healthy.