is this normal for a toddler??? possible developmental syndrome?? please help!

[yoitstc]

EZRA'S HISTORY:   Ezra is now 22 MO. My LO was born with a heart murmur, pulmenary hypertension, strabismus, and a cleft palate, recently diagnosed with rare syndrome called CORNELIA DE LANGE syndrome.  Genetist says syndrome is still being researched, and diagnosis is based purely on clinical observations, no tests or bloodwork.  We are struggling with the fact that slight to severe mental retardation typically accompanies C.D.L.S.  Geneticist says if our LO has MR, then very slight, possible none.( LO sees a panel of specialist including occupational , speech, and physical therapists, and infant educators who all say his mental and physical development is progressing fine, just a little behind) 

PROBLEM:  This is our first and only child, and besides observing friends and family with LOs, we are not sure if our LO's behavior is within the range of "normal"(i hate that word).  On an almost constant basis, he slaps, sometimes bites, but mostly pinches, scratches, and pulls others hair.  It's to the point where we all kind of flinch when we go in for a smooch or hug!  In fact, it is real common in our household, to push his hands down when we kiss him goodbye or hug him. It is only when he is real close, on our laps, or eating, trying to get him to sleep that he does this. Other than that, he is so sweet.  Is this normal?  I am so scared that this behavior is not normal toddler tantrums(possibly teething?).  He doesn't discern his hurting  others by any upsetting event(taking something  from him, ending story time, leaving the park, going to sleep: normal upsetting times for a toddler).  His hurting EVERYONE is becoming a problem, to the point where, when we take him to his playgroup, we are within arms reach to protect the other children and parents.

Help!  Any suggestions or stories?

[justKate]

Hi there. I wanted to say that this sounds like something that could be brought up with the occupational therapist--I think folks here are going to be hesitant to say "normal or not" given his other issues.  So I think it could be normal, but it could also be related to some of the other stuff he might have going on.  YOu might try posting in the Special Needs Parenting subforum--there might be parents there that are more familiar with your son's specific diagnosis.  It sounds like you have a lot on your plate, and I hope that you are finding the answers that you need.  My DD also saw an OT for a while for sensory seeking issues, so that's sort of where I'm coming from when I say it could be normal toddler behavior IME (especially if he is slightly delayed, like in the 12-18 month range....). Good luck mama.  Hugs to you.

[Aridel]

It's so hard to tell what's "normal" and what's not at that age, especially over the internet.  I agree with the PP that one of her therapists would be a great resource.  Have you connected with the Cornelia DeLange community?  There is a CDLS foundation that has info and parent resources, as well as the option to send questions in to experts, and have them respond.  I apologize if you already know all of this, but I know the parent contact was very important for us in our journey as SN parents (not CdLS though)