transitions

One of the scariest of times for parents of children with disabilities are ones of transition.  There is sort of a timeline for theses transitions that generally revolve around the kids' ages and having to move from programs where both they and you as parents have become comfortable.  Perhaps a more frightening time is when the kids become adults and though their cognitive abilities might not have changed from...well from ever, they must leave the world of paediatric healthcare.  They leave professionals that may have known them all their lives and environments that are developed to best serve the needs of children.  These professional spaces are colourful, warm and inviting.  Staff are easily charmed by the special needs child's idiosyncracies and behavioural outbursts are easily forgiven.  The adult world of medicine is a far different place.  No one is walking around with suckers in their pocket to hand out when the appointment is done.  There are no stickers at the lab for sitting still or at the very least not biting the tech and most certainly there is no one in the doctors office that finds them inexplicably charming just for being them.  What there is is staff that are unsure and uneasy about the giant two year old who fearfully question if they are going to get hit etc.  There are waiting rooms of other staring patients who have a long time to commit your child's 'uniqueness' to memory as the appointments are rarely on time leaving your child ample time to demonstrate how much patience they may or may not have.

I have been around a long time.  Half of my children have now crossed over into adult medicine.  Luckily some of the issues with the kids that may have had us gathering frequent flyer miles at the paediatrician's office have since resolved and for the most part the kids are stable.  One of the kids who has a seizure disorder to accompany her autism and severe delays was given an mri of her head before Christmas.  The purpose at the ripe old age of 28 was to see if there was anything structurally that was causing the girl to have seizures.  My feeling was that we were a little late in the game to be looking for that when she has been having seizures for 15 years but I went along with it.  My bionic vision always lead me to believe she had autism and literature supports the fact that many folks with autism have seizure disorders as bonus prizes with many of them not starting until puberty which illustrated our situation to a tee.  It was my belief that what would be found would be a 'normal' looking brain with no obvious differences.  The long and the short of it was the mri showed a normal brain with no obvious differences...

There is a reason for me recounting this story and a point to it as well I promise.  We were given the results of the mri by the neurologist who was the physician that ordered it.  When I had my daughter at her yearly physical with her gp I mentioned to him that she had had it done.  He said he would order the results for his file which was all fine and dandy and I thought nothing more of it.  Here is where the plot thickens....

I got a call today from the gp's office saying the doctor would like me to come in for an appointment to discuss the results of my daughter's mri.  I called said thank you very much but we know the results as we had our follow up with the specialist.  The nurse then proceeds to tell me that there were abnormalities in the maxillary sinuses, mucosal thickening leaving the child with chronic sinus disease etc etc so the doctor would like to discuss this.  Holy Jeezus!  What the heck?  The mri was performed a zillion months ago, we saw the dr months ago and all he tells me is that her brain is normal and doesn't mention that an actual medical condition exists because why? it wasn't his department?  If I had not told the regular doctor about the mri he would not have known to ask for the results.  I know that there can be inconsistencies in paediatric care so am not naive however I have always believed the adults who have been disabled since birth or soon after require their own specialist similar to the paediatrician. I think this is an example.  I don't know how serious this issue is for my daughter as she has zero noticeable symptoms of a problem and we don't have an appointment until March so I am assuming all is well ( I have a lot of faith in the gp) but it is obviously important enough to warrant a discussion and possible treatment plan.

So the moral of the story I guess is this....when your dependently disabled children cross over into adult services you are starting your journey as a parent to such a child all over again.  You must establish treatment teams and programming teams and perhaps new respite opportunities because once the strike of midnight happens beginning the 18th year it's a whole new time of transition.  

I should mention I don't like change....