Reply to What happens at an initial consultation with a developmental pediatrician?

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[quote=Anonymous]Like everyone else here, I have dealt with years of interventions.  We are coming up on 7 years of work on a kid who has Asperger's, anxiety, and some other stuff that's often co morbid with those disorders.  Like you, I had a perfectly lovely little guy until about age 3 1/2 when he started having some behaviors that drew our attention.  Sensory issues and a couple of hitting incidents.  We immediately sought help when the school mentioned a possible sensory disorder because they were seeing things at school (reluctance to play on the playground due to "too many kids") and we were seeing things at home (difficulty with new clothes, refusal to wear costumes and hats).  In retrospect, we probably jumped at intervention more quickly than we needed to given what we were seeing in front of us at that exact time, but then again, given the ultimate diagnosis, we were right to intervene.

I've never been particularly angry about his diagnosis.  I have been angry at certain aspects of the way things have played out in school, with friends, especially with my friends who have talked about us, turned against us.  I've been sad and I worry deeply about his future.  I've had to leave my professional track job and take a job that is extremely flexible so I can be there for all those appointments and days when he is simply too anxious to function.  I have a Master's degree so that's kind of hard to accept, but I'm figuring out a new path.  We have no money, my DH and I each work well over 60 hours/week for that no money, but I'm here every day for the kids, even if it means working evenings/weekends and not much time with my husband.  It will get better (it has to, right).

It sounds like you are being sent on a very reasonable path.  The 1 teacher NEVER should have suggested autism to you, that is not allowed and completely inappropriate.  However, the teachers are taking their time to speak to you about their concerns bc they want to help you and your son.  It is a very difficult position for them to be in and they would much rather not have to do it.  You mention daycare workers and charter school teachers which means he is displaying this behavior in more than one setting.  The behavior you describe is somewhere on the extreme side of a 3-y-o or a real problem.  It's probably a real problem if more than one educational professional has brought it up.  Licking is NOT a normal 3-y-o behavior.  It's sensory-seeking and goes along with the other sensory-seeking tendencies he is displaying.

I know a kid who had absence seizures and, with medication, they were successfully treated.  He went for testing when he "spaced out" in the middle of crossing a street and it's a darned good thing the teacher with him pulled him across the street.  It makes a lot of sense to go get a night-time EEG to rule this out.   My son has had 2 24-hour EEG's and a 72-hour EEG and it's not the end of the world.  He's incredibly sensitive and autistic and he went through it with minimal complaint.  Make it fun for your son.  For every specialist we see I remind my son of what's in the office (fish tank, cool books) and what treat we will get afterward (Sprite Zero at the gas station, McD's).  He has never once fussed about going to an appointment after over 6 years.

We are discovering and dealing with problems that used to be ignored, ridiculed, or shut away.  My DH definitely has Asperger's and just got to have a difficult time of it instead of receiving help.  It wasn't even recognized as a diagnosis until the 1990's.  I understand anxiety because I have it myself and it doesn't make all this easier.

Honestly, this sucks and that's all there is to it.  But there's no conspiracy.  No one tries to put labels on your child that don't belong.  An appropriate diagnosis will help you, help your son, put you on the right track.  If that track includes medication, so be it.  If he has a medical disorder that can be helped by medication, that's what you do.  If he does have a disorder, you are in for a long road.  It's a road we have all been down.  We are trying to help you, but you have to accept the help.  Not that many people will be as compassionate as the people on this list.  Scary, but true.  They will judge, they will think you are doing too much (he's just a normal boy with some behavior issues that you are trying to make into a disorder) or too little.  You will never feel that you get it all right.  Most importantly, though, you need to figure out a way to wrap your brain around this and CALM DOWN.  I think it is imperative that you see a developmental ped who is calm.  We see Dr. Karin Belsito in Bethesda and she is incredible.  If you can get in with Dr. Shapiro he is also incredible.

Here's the reality:  if there is actually a problem and it's not just a stage you will:

spend more money than you ever thought you could.  Goodbye college fund.  Goodbye paying off your credit cards every month.

lose friends, but gain new ones whose kids have special needs.

Cry, a lot.

Realize that it's not as bad as it is.

Reevaluate things a million times based on your new reality.

I don't know if this is helpful.  Please don't yell at me; I've had my share of battles and this week DCPS decided to go after us again.  It's unbelievable what they will do rather than just helping you.  Get the tests that the specialists tell you to get and be glad that we live in a place where you don't have to drive 200 miles to get them.  Listen to the experts, do what you can do, and take some time for yourself to process all of this.  It will be ok.[/quote]

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