Occupational Therapy at Home

I recently had my younger son, Bear (5 years old), evaluated for occupational therapy.  He did qualify, as I expected he would, but after I explained all the things I already do with him at home, the therapist told me “You’re like an OT in a Mom.  You can come here if you want, but we’d basically be doing the same things with him.”

My older son, Fuzzy (8 years old), had occupational therapy for several years.  One thing I have learned in our Autism journey is my husband and I are completely responsible for Autism treatment.  For a while I believed the doctors and therapists were there to guide us in providing what Fuzzy would need.  I quickly learned the truth is just the opposite.  It is my job to guide the doctors and therapists in how to use their expert knowledge to help my son specifically.  If you have an Autistic child, please think about this carefully.  I believe this change in my mindset has made a gigantic difference for us.  I am the expert on Fuzzy’s Autism, and I consult with the experts – not the other way around.  Any therapy session is more for me to learn what they are doing so I can do it at home.

Bear has OT at home almost every day.  He knows it as “fine motor time”.  He knows it’s to strengthen his hand muscles and coordination.  I made a laminated chart for him with various OT type activities.  He picks one each time he does OT and checks it off on the chart.  Eventually after a few weeks he will check off all the activities and then we’ll erase it and he’ll start over.  He likes having the choice of what to do. He’s pretty independent with this as well.  He probably gets more out of it when I do it with him so I can monitor him more carefully and he just enjoys it more if it’s with me.  I try to do that when I can, but he’s totally capable of doing any activity by himself as well.

I am the therapist

One of the most important lessons I have learned in our Autism journey so far is that I am Fuzzy’s therapist in addition to his Mom.  I did not think like this in the first few years at all.  I thought I was consulting the experts in what was going on with my son, they were treating him, and I was doing my best to follow their advice and program at home.

Eventually I came to realize that I will always be better at identifying Fuzzy’s therapeutic needs than a therapist ever will be.  This is nothing against them, obviously they cannot know my son as well as I do.  I researched the therapies even more than I already had.  I became my own little expert in speech and occupational therapy, in consultation with the actual experts, to find out how these therapies can help Fuzzy. I began to set the agenda for sessions.  I set the therapy goals.  I explained what we are doing as our home program and asked how THEY can complement or reinforce what we do.

I really don’t know if this bothered them or not, but I do know they believed I was proactive and they were supportive. This change in approach happened with doctors as well.  Doctor appointment used to be like this:  I describe the latest set of behaviors or symptoms, the doctor works with Fuzzy for however long he wants, and then I listen to the doctor’s thoughts.

Now it goes like this:  I present a list of my thoughts regarding the behaviors that I wish to consult him on, he works with Fuzzy for about 5 minutes, I present my ideas for altering his treatment, he tweaks my solution slightly perhaps, and then we leave. This path is what led me to RDI.  RDI is totally about the parents helping the child.  The RDI therapist (or consultant as it’s called in RDI) works almost exclusively with the parents.  It is the parents’ job to implement all of RDI at home.

If you have an Autistic child, please think about this carefully.  I believe this change in my mindset has made a gigantic difference for us.  I am the expert on Fuzzy’s Autism, and I consult with the experts – not the other way around.  Any therapy session is more for me to learn what they are doing so I can do it at home.  I’m the only therapist he has. It is an absolutely giant responsibility, I won’t lie.  However, there is frankly no alternative.  I just can’t leave it up to the “experts” who don’t know Fuzzy at all.

They are absolutely wonderful sources of support and information for ME, but they aren’t who’s going to help him.  It’s up to me.

(Note:  I referred to just myself here for easier reading and writing.  My husband is completely involved, though I do take the lead on it.  He’s very supportive! )

How to decide when to make a change?

One of the hard things about autism is the dealing with the wide variety of coexisting conditions. The experts differ on if these are truly coexisting conditions or symptoms of one condition, the autism (to us, it doesn’t really matter). Some examples include: anxiety disorders, ADHD, OCD, depression, substance abuse, to name a few. The difficulty is that we are often attempting to treat all of the coexisting conditions and the autism at the same time. It gets to be quite difficult to know what is affecting what. For example, speech is obviously affected by autism, but it can be affected by ADHD and anxiety disorders also. So if speech is currently an issue, where do you even start? We approach potential changes to our routines and therapy choices with great care (substitute “pray” with “reflect” if you prefer):

  • Pray about it.  At first when we notice something is unusually off, we do nothing about it.  We pray about it and see how it goes.
  • Get a second opinion. Ask somebody who doesn’t see your child every day how s/he feels about the issue you are seeing.  Encourage this person to be bluntly honest with you.
  • Pray about it, aka don’t move too fast.  It’s so very tempting to immediately start into some kind of “fix it” mode with doctors, medications, therapies, etc.
  • Speak to a medical professional. Our doctors usually seem as baffled as us, but they have surprised me a few times with truly great advice!
  • If you decide to make a change, focus on one thing at a time. As best as you can, only change one thing at a time.  It’s hard to do this, there is no “perfect” time to make a change and evaluate it.  Just do your best.
  • Go slowly.  Don’t worry about trying to fix whatever is going on right now.  Think about how you want the situation to be in a year or two and work back from there.  Always keep an eye to the future goal and set your present goals accordingly.
  • Monitor the change and pray about it. Monitoring the change is always difficult.  Despite your best efforts to only change one thing at a time, you still won’t really know what is affecting what.  There is no black and white answer.  Do you feel you are moving in the right direction?
  • Go back to the beginning of this process. We are always in this process at some point.

I can think of at least three different issues right now that we are putting through this process.  Each time we make some kind of major change to our therapy choices, I’d say it takes about six months until we are really comfortable with it.  We feel pretty good then until it’s time to reevaluate. You are never “finished”.  It’s ok though!  Once you’ve moved from one step to the next, you have time to take a breather and just enjoy your child and your life!  Don’t obsess about the change during one of the steps.  Moving forward in the process is hard, take time to enjoy in the “in between” which is really what life is all about!

Home Therapy Program

I wrote earlier about why I consider myself to be my kids’ therapist.  This post is about what we’re doing currently in our home therapy program.  It’s a snapshot of what’s going on right now, I change it up several times a year. We did manage to do a program like this during Fuzzy’s two years of public school before homeschool.  We didn’t do as much each day, and there would be some days we didn’t do any of it at all.  That’s fine, the program is designed so that I just check off what I accomplish each day, and then once everything is checked off (over a week usually), I just start all over again.  I also worked with Fuzzy’s teachers on the homework levels so we would have more time for home therapy.  I was lucky in that Fuzzy did not have any academic difficulties, so homework wasn’t a big concern for us at that time. However, this is a gigantic portion of the reason we homeschool, so we have time to devote to all of this.  We do this all first thing each day.  We don’t start on anything academic (though these skills are necessary for academics!) until mid-morning. Daily Program – addresses hypotonia, dysgraphia, developmental coordination disorder, and fine motor delays Fine Motor Program – this is part of the daily program, I just have it detailed in this document RDI – this is what we’re doing for the social aspect of Autism treatment. I’m certainly not a general expert, but I’ve come to know what helps my kids.  Hopefully this can help you out when you design your own home therapy program!

Dinner Conversation Game

We tried the dinner conversation game tonight where one person starts a story and then you go in a circle with each person adding on a sentence or two to continue the story.  DH and I demonstrated with each other first and then we started going around in a circle.  Our RDI consultant recommended it as a way to practice dynamic thinking skills. I had no idea what to expect but I assumed Fuzzy would struggle.  He really didn’t!

The story started with DH saying “Papa and Bear were on a camping trip and Fuzzy had hidden in the back seat to go with them to surprise them.”  Fuzzy added on all kinds of twists during his turn like spaceships and falling in a big hole.  He never really seemed at a loss with what to add on to.  AND he never seemed to get upset when I (who went after him) would intentionally somewhat, just a little, mess up his plot line. It’s funny in retrospect to think how often I intentionally messed up the kids’ plot lines.  It wasn’t even really conscience, I just did it.  Maybe it’s related to that parental instinct to constantly push your kids further that I saw in those RDI videos… The one funny thing Fuzzy did do sometimes was explain his statement to us like we may not quite understand what he meant.  Or if he inserted something funny, he would also explain it to us. Bear of course loved it and introduced wild plot lines, often in which Fuzzy would be harmed in some way.  Ah, siblings.  Fuzzy took it well and always got himself out of trouble when it was his turn.  🙂

Inattentive ADD

I want to bring attention to what I think may be a very unknown type of ADHD.  Before I ever heard of ADHD-PI (primarily inattentive) I associated children with ADHD as very hyper, having difficulty sitting still, difficulty focusing on anything, and moving quickly from task to task to task.

This description does not fit Fuzzy at all.  He is just about the opposite of these things.  He is under hyper and low energy, he has no trouble sitting still – he will be the kid during circle time listening to a story even if everybody else is running around.  Trying to get him to move quickly from task to task is likely to lead to great frustration for him. There are other interesting things he does as well though.  He easily gets distracted.  Yes many 6-9 year old do, especially boys.  The level I’m talking about here is above and beyond.  I have seen him spot a piece of dust floating in the air and follow it away from a line he is in.  I have seen him be so fascinated by a dandelion blowing in the wind he doesn’t notice approximately 1000 other children leaving the area he is in.  I could list so many examples, but for the sake of his privacy, please just believe me.

After a while, I did not completely attribute this to Autism anymore.  Of course there is overlap, but this area in particular seemed extreme.  I did my own research and found ADHD-PI.  There is a wonderful blog, Primarily Inattentive ADD, that is full of information about this.  It says the “The characteristic symptoms of the inattentive subtype are inattention, easy distractibility, disorganization, procrastination and forgetfulness.”  There is a great assessment checklist as well.  Interestingly, there are people in the community that believe ADHD-PI doesn’t even belong in the ADHD category.  I agree that it is confusing at least! I presented all of this to our neurologist and he agreed.  (As a side note, this has been our history with Fuzzy the entire time.  I notice something, research it, present it to a medical person and they agree with me.  I would be ok with somebody telling me something for once instead!) 🙂

I do feel that ADHD-PI is a symptom of Fuzzy’s form of Autism, but it’s serious enough that we do look at it as its own issue as well. I also believe ADHD-PI can certainly exist without Autism.  If you have any questions about this lesser known form of ADHD please ask me, I can likely at least point you in the right direction.  I would definitely read Primarily Inattentive ADD as well, it’s the best resource I’ve found.