Thursday, 30 July 2015

Professionalism, Boundaries, and In-Home Therapies

I had a personal experience several years ago that clearly still impacts me to this day.  I worked with a provider where boundaries were crossed, too much personal information was shared and an uncomfortable bond ensued that put my well-being at risk.  That’s me putting it nicely.  In any case, ever since that instance I have remained very careful around other providers, probably overly careful, as I think I finally shook my therapist’s hand (yes, I have a therapist!  I have two special needs kids are you nuts?!?) maybe 4 months ago for the first time after nearly 2 years of work, but it has served me well.

See we have SCADS of providers running around in our family’s situation.  Occupational therapists, speech therapists, special educators, school therapists, many many doctors and nurses, and now just to add a new dynamic to the situation, ABA therapists and techs.  Who are IN OUR HOME.  This throws a whole new wrench into my distancing technique.  I mean I am cooking dinners, folding laundry, cleaning, and doing my job while they are there, so there’s not much hiding on my side.  This is why I have come to appreciate THEIR professionalism even more than I used to, even given what happened in the past. 

I am all for pleasant conversation, I am all for sharing experiences and being friendly, even friendish.  I have provider’s cell phone numbers, email addresses, and we share many pieces of information about the boys, and occasionally even chat when it’s relevant.  You can’t be this deeply into autism, into finding things that work for your child, without this happening to a certain extent.  I am happy to have established bonds with these providers, I am happy that I am able to help my kids without feeling like a bully- you catch more flies with honey- and most of the time that is the god’s honest truth.  The bottom line, at the end of the day though is that these people are here to help my children.  When push comes to shove, my job is not to like these people or get along with them, or to even worry about them.  My job is to advocate for my sons and ensure that they are getting what they need and deserve. 

I have had some great recent experiences with ABA, for which I am extremely grateful.  Nate’s ABA technician has actually really spoiled me for most other techs.  I took it for granted when Nate first started his therapy and up popped two amazing techs who focused on my child and were committed to his success.  We lost one when she went to work at a social skills camp for the summer, but have had the other with us since March, and watching her work with Nate shows me what ABA is supposed to, and can be.  We also recently lost the boys’ actual ABA therapist when she moved, but the new therapist seems great so far and there are no issues. 

But Jack- poor buddy.  His first tech was almost shy with him, and when behavior management is one of the main focuses of the therapy, and your kid is super smart, that’s just not going to fly.  Not to mention that she had difficulty helping him with his math, because she had difficulty completing it herself. At one point he was taught writing the time on a clock backwards (minutes for hours and vice versa).  His teachers actually asked me what was going on with his homework because it was coming back incorrect.  I think they were concerned about my math skills.  This was the first practitioner I have ever asked to leave in my almost 6 year autism journey with Jack.  The fight to get these services was no joke, and I was not going to stand by and worry that he wasn’t getting what he needed.  Meanwhile, it took nearly 6 weeks to get a new tech.  Which is where we are now- one month into working with Jack’s new tech.  Who, when she is with him, and focused on HIM, is excellent.  But those are the two current issues, and they are HUGE.  Since July 6th  when she started, there have been 4-5 absences and 2 significant latenesses (like over an hour).  I have been as empathetic to this as I possibly can, as I of all people understand that unexpected things happen- but at the same time, this is about JACK.  And when every session becomes about the professional, and the things happening in their life, that is not beneficial to my son either.  He should not know about deaths in the family, or pregnancies, or cramping if the tech doesn’t drink enough water.  When he has a meltdown, and I am reeling and he is reeling, my primary concern should not be that she is cramping and blaming my son’s behavior for this.  I do not need to hear that she is going to the ER to get “checked out”, when the extent of my son’s aggression involved “ramming” her with his bike that still has training wheels (by the way, he is not capable of RAMMING, he is barely capable of forward movement while pedaling due to gross motor weakness- and I was standing right there, and that is NOT what happened).  

We signed up for ABA therapy- I went through MONTHS of fighting to get this therapy into place.  I can’t even express to you how stressful this has been at times, how many phone calls were made, how many times I broke down sobbing because I didn’t think I could make it happen.  So when my child is in the throes of behavioral issues that are part of an “extinction burst” of behavior brought on by increasing demands (which are actually positive things- in the long run anyway), I want to be able to worry about HIM.  Not how his practitioner will react, or whether it will be too stressful physically or emotionally for HER.  You don’t train to work in ABA and pretend this type of behavior is not going to happen.  This is the reason for DOING the therapy.  I am at a crossroads with this right now- I don’t want my son to miss any more therapy, but our house is already full of the drama that having two children with autism brings.  We don’t need added stress.  This therapy is supposed to help.  And help US- not give his practitioner a place to come to vent about her life.  I really feel that we need a new tech- again, but is asking for this going to make him miss MORE sessions?  He’s already missed so many because of our previous experience. 

Bottom line- this sucks. Oh and also?  BOUNDARIES PEOPLE.  Know them, respect them, don't overstep them.