A Coordinated Effort.

“Coordination”: harmonious combination or interaction, as of functions or parts.” 

My son sees a lot of therapists and teachers in one week.  He sees occupational therapists (OTs), speech therapists (STs), his Applied Behavioral Analysis (ABA) tutors, his summer preschool teacher, and his social skills class coordinator.  When I can work it into the schedule, like last spring, we will do a gym class.  And during the school year, there is the school OT and ST.

For the most part, these people do not know each other.  When they do know each other, it’s only casual and not part of an in-depth understanding of what one does with my son over the other.  So, truthfully, when I see the autism puzzle pieces that are supposed to symbolize autism, I think of the lack of coordination of his care.

Each discipline is doing something different with my child.  Each therapist/teacher though, is a variation on the theme – the goal – of making my son the best functioning child he can be.  Unfortunately, in the real world no one knows what the other is doing.  I can’t help but know that this affects the quality of therapy/teaching my son receives.

For example, this last week in ST, they gave us a new therapist.  No one warned us in advance.  He was fairly calm about the whole thing but I did have to go into the speech room with him because he was uncomfortable going with two people he did not know.

It turned out that this new ST hadn’t read T’s file at all.  She was surprised that he could read because she was trying to test his speech by cards with words on them. He’d been reading all the answers on the cards.  Halfway through the session, she asked if he could read.  “Yes,” I told her,  “he’s been reading since he was two.”  Then, she called him by the wrong name.  Three times.

I want to do something about this lack of coordination. I must admit that I have been a bit unprepared and un-coordinated myself.  Every week, I get a report from ABA about my son’s progress within the programs on which he is currently working.  I keep the reports.  I follow along in the meetings.  I don’t use the reports as a tool to provide his OTs and STs and teachers with so they have an opportunity to see his pace within the program in which he spends the majority of his time.

Truthfully, I rather doubt that if I passed these reports around that the STs and OTs would read them, much less work with that knowledge to better teach my son within their own specialties.  I don’t say that in a way to put them down.  I just know the reality is that their jobs are from 9-5.  I doubt they get paid to take work home and read reports from other providers.

The exception is our OT who has read about and requested additional information concerning my son.  However, even in her case, her time is limited.  She can’t run around training the ABA tutors to use brushing and joint compression or the other OT tricks that calm and organize my son.  The ABA tutors, likewise are working with other children when not with my son so they cannot go to his OT sessions to learn.

If they did coordinate, how would this affect what was taught?  For one thing, they would know how much he could read, write, speak, what kind of breaks he needs, how to help him calm down and organize to focus for studying, teach him how to make eye contact, take turns, and comprehend.  This would affect how much and what was taught and how to teach it so it would stick.

It’s really up to me to coordinate amongst them.  But who wants a mom butting in when they have all had training and education and I’ve got none in their areas of expertise?  How scary is that? I’m like a fly watching the bees gather pollen to make nectar.  I have to watch and then report to other bees how it’s done?  I want to get it right.

I want to be able to take the brushing and joint compression from OT and pass it on in ABA for when my son melts down.  I want to be able to take the method of running a program and obtaining compliance from ABA and provide it to the STs.  I want the STs to use the ABA reinforcement program while teaching my son how to improve his communication.  I want to take the litany of “w-h” questions taught in a good ST session to ABA and make sure they know these questions have been mastered and the ST is moving on to more complex and abstract concepts such as “making wishes”.

So what does all that mean?  I guess I can try to pass my limited knowledge of information around.  Otherwise, I will just have to sit back and wait for my son to teach the teachers and therapists what he knows so they can teach him more of what he needs. As usual, two steps forward – one back.  Someday, I hope for two steps forward and no steps back.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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35 Responses to A Coordinated Effort.

  1. So, I look at that puzzle graphic and it has me thinking… you see that piece in the middle — right between the eyes? That is you, lady. You are the piece in the middle of T’s treatment plan that holds all the other pieces together.

    I’ll be completely honest — it’s a crummy place to be. With email, social media, blogs, and modern technology like photocopiers, the other pieces of the puzzle should be able to coordinate with each other all by themselves. But like you said… those puzzle pieces are working 9-5. I go through the same thing every time Little Miss and I visit a therapist. It just sucks.

    But remember — while you may not be an expert on the treatments T is receiving, you are an expert on T. You have to be able to step in with the information from the other therapists — even if you’re not sure it’s 100% perfect. I know that coming from a law background, that may be hard to do, but look at it this way — even 80% information is 80% more than the therapist had before. And if your therapist is worth keeping on the payroll, he or she will be willing to look up the other 20% to make sure they get it right. That’s continuing education. It’s job security.

    You can do this, lady. As a lawyer, I know you can keep good records. You can dot all the i’s and cross all the t’s. Just think of this as your biggest, most important case file ever!

    ((Hugs))

    • solodialogue says:

      Thanks Karla! I’m going to start carrying a folder around. I already have an electronic folder for his reports but coordinating them among the providers is just not enough. I think I have to add in face to face discussion which means I have to remember it. The folder should help. You are right – it is the most important part of my life… and thanks for the hugs! 🙂

  2. Tessa says:

    The folder is a good idea! Often, when we hear about being the best advocate for our child, we’re talking about in school. However, we have to advocate for them in all areas.

  3. Kelly says:

    Hey Karen – definitely an issue that rears it’s ugly head in our lives, too. I did have our ABA going to dvp ped appointments, but that turned out to be terrible. The doc and ABA totally rubbed each other the wrong way, and each took me aside at different times after the group appointment to tell me that they thought the other one was unprofessional and not good enough for Ted. Yeah. Kinda ruined my opinion of both of them for a while.

    • solodialogue says:

      Aww, Kelly, I so know this feeling. They try to play you against the other and you wind up in the middle just trying to do what is best for Ted. It’s an awful place for them to put you into in the first place! I’ve been there. Not to that extent though – wow! I think I’d feel the same way. 😦

  4. It is really hard! When Brian was younger and receiving ABA at home we had our OT come and do consultations with the ABA worker and the ABA worker was able to carryover brushing and joint compressions. We work with a clinic that is owned by both our speech and our OT so there is a lot of feedback there. I have our biomedical doctor call our regular pediatrician after each big appointment that we have. But really it does fall all on our shoulders. I even bring my kids report cards to their OT and speech therapists. The more communication the better.

    And as a new OTA I would read any files parents brought to me. Of course I don’t have any burn-out or anything yet lol.

    • solodialogue says:

      Well – not just as a new OTA but you have a very special interest because you can empathize from your perspective as a mom! Our OT and Speech are at the same place but only half the time. We have it through school and privately – the doctors? Forget it – totally out of the loop with everyone there! I better get it together and get busy with a system. Something to keep everyone on the same page…

  5. Liz Ditz says:

    Hi there! I posted a link to this post and a request for advice or guidance to Thinking Person’s Guide to Autism facebook page. (I’m an editor at TPGA):

    http://www.facebook.com/index.php?logged_out=755e796a2514b0ad3921b60c030da00c#!/thinkingpersonsguidetoautism/posts/214598028583790

    The community at TPGA’s facebook page is helpful and voluble. I hope you get some good clues.

    • solodialogue says:

      So very grateful for the link to this post and the amazing comments I received with ideas on private groups through FB and the Google spreadsheet! Fantastic ideas! I would encourage all of you who commented here to check out the link from Liz! I have always been in awe of The Thinking Person’s Guide to Autism and am honored you read here today! Sorry – so late to reply but at work all day until about 8:30 tonight! Very good suggestions – many of which I will attempt to implement! 🙂

  6. Blue says:

    99.9% of the time, I completely agree that communication between the different professionals in T’s life is incredibly important, for all of the reasons you listed. One of your points, though, I’d like to look at from a slightly different angle. You mentioned that “I want to take the litany of “w-h” questions taught in a good ST session to ABA and make sure they know these questions have been mastered and the ST is moving on to more complex and abstract concepts such as “making wishes”.” While it’s incredibly awesome that T has mastered these questions with the ST, it’s not guaranteed that the skill has generalized to other areas of his life yet– many kids initially tie a new skill to the location they learned it at or the specific professional they learned it with. He may well need to relearn the w-h questions again with ABA at home for the skill to generalize into his everyday life and truly be “mastered” (with the same being true in the other direction– I’m not trying to say that ABA needs to teach something before it’s really learned). So while it would be really helpful for the different professionals to know what the others have taught T (and how successful he’s been), repetition of topics across professionals and environments might not be the worst thing, either.

    That said, yes yes yes PLEASE for more communication! I wish I knew so much more about the other professionals who work with the kids I work with, so that I knew how best to reach my current kiddo without putting him through the trial-and-error on my part that other professionals have already gone through with him. Have you brought up these concerns with your ABA team? They might well be willing to come with you and T to an appointment or two of OT or ST or anything else, to observe and take notes and collaborate. It wouldn’t be as helpful as a fully collaborative ongoing relationship between the professionals, but it might help.

    • solodialogue says:

      True – repetition across therapies is not the worst thing. Keeping up is difficult. I cannot know truly remember whether ABA also mastered wh questions or just placed the program on hold. You see, even I need an updated spreadsheet to know what the consensus is on my son, although asking him right now has just led to him answering about 50 percent of the questions…

      Communication is key. I have asked for coordination with everyone. ABA has gone to OT and speech in the past – but only twice and that was quite a while ago. It’s not a regular thing. ABA also did coordinate for monthly meetings with the school district’s OT and speech people but not the private OT and speech who tend not to participate in any outside therapy coordination unless those people are able to come during their sessions… More is definitely needed!

  7. Using a folder is great idea. I am a speech therapist working in schools. I have had parents bring notebooks that include a face page from the parents and or caregivers that lists important information about the child and then notes from each professional seeing them. I would insist that notes be made at every session. Also, don’t be afraid to jump in and show the speech therapist how to use joint compression, for example. I appreciate learning how to better serve my clients.

    • solodialogue says:

      Thank you for commenting Stacey! The folder may be a starting point for the face to face but I love the idea of starting a private group on FB where I can enter information about my son and the therapists can exchange ideas amongst themselves. That sounds awesome – provided they actually use it! I also love the idea of a Google spreadsheet where I can log his daily input/output info and any unusual behaviors, great moments, new sentences, growth and other health issues! I think we’re on our way! 🙂

  8. Aspie Mom says:

    As the mother of a 13-yr-old, I would like to offer a big-picture comment.
    1 – Our kids are socially delayed. A lot of what freaks people out at 5 just goes away over time, so obsessing about it to the exclusion of meeting the permanent issues of autism is energy wasted. Common HFA examples: meltdowns, lack of interest in friends, perseveration.
    Our goal is to raise functional adults, not functional 5-yr-olds.
    2 – Karla is 100% right. You are the expert. And the therapists are NOT rocket scientists.
    You are the leader. Observe. Feel. Watch. Then focus on what is helping your kid the most THIS MONTH. Your kid is learning something THIS WEEK, and if you can help his team to focus on and support that, you have the best chance to optimize your resources.
    Yes, you TELL your team what works for your kid. No one else will.

    Over time, as you get to know your kid and autism, you will see longer term themes, and figure out how to incorporate those needs as well. Really hard to learn: interrupt behavior, “tune in”, make the connection between one’s own behavior and getting what you want.
    A LOT more is known now than 10 years ago. If your therapist just walks through a curriculum without regard to your kid’s own NOW, you can do better. If it’s your $$, hold out for someone who SEES your child – ie a true Empath. : )

    Last, when the pressure is overwhelming, please consider this: Our children are perfect. They DO need some coping mechanisms and skills that others kids don’t seem to need. But, as parents, our job is always the same: love them, be 100% on their team, know that they are perfect and that life is hard for them. That’s 90% of any parent’s job, right there.

    • solodialogue says:

      Thank you for your comment. It is always great to have a mom in the know share information from down the road ahead. I think it is all intuitive that as parents, we are the leaders for our children. Our therapists do respect what we desire for our children and work to facilitate that. Often though, I am truly in the dark as to even seeing an issue- such as the chewing food because of proprioceptive input thing that I totally would never put together on my own. I guess by raising the issue of eating – I got there but I always feel a bit behind in “catching on”.

      I think you are completely right that if the therapist is walking through a curriculum without regard to my child’s needs now then I can do better. The problem speech therapist though is at the place that has the brilliant OT and that makes it more tricky. As long as they leave me with our old regular speech therapist, though (who is incredibly thorough) I think we’ll be fine. Loving our kids is always the most important thing!

  9. laura hart says:

    We use facebook. I created a private group and friended all my son’s therapists long enough to add them to the group, the de-friended them (cause I am sure they want to be able to talk openly on their fb page without parent’s scrutinizing their pages) and they all post updates on the group page. Not only does it allow for them to see what the others are working on, but it allows them better insight into how my son works with each of them and what he is excelling (or not) at.

    • solodialogue says:

      Thank you Laura! I absolutely LOVE this idea! This is one that I can implement right now and is definitely a keeper. I’ve just never used the social media this way – but it’s so easy it will work as long as they use it! Really and truly grateful for this one and your comment here! 🙂

  10. Broot says:

    That’s something we try to teach our Playcentre Mums. The parents of a child- any child, NT or otherwise – are the child’s first, best, and most influential teacher. The parent’s voice is the most important in any education/health forum because you know your child best. The parent has the holistic view of the child, and knows all the socio-cultural influences.

    Step away from the “I’m only the (small p) parent” thinking and into the “I am the (big P) Parent” thinking. Think of it more in a governance/management thing. You (the parent) are the governance – you’re overseeing everything, and you’re telling management what to do. Management (all the teachers and help) can make recommendations based on their skills and knowledge, but you make the final decisions, because you’re the governance. 😉

    I shall find you the best quote about it from Pennie Brownlee… 🙂 **hugs**

    • Broot says:

      Quote Pennie Brownlee: “At Playcentre we believe that you, the parents, are the most important people in your children’s lives. You are your children’s most important teacher, ever. They will learn more from you than they will learn from all the other teachers and lecturers that they’ll ever have – put together – and that’s because a person’s entire life is dependent on what happens for them in the early years.”

      • solodialogue says:

        This is a beautiful quote – and a bit daunting with the “entire life” language! Never fear though! I will do it -because from within the depths of love comes great courage! 🙂

    • solodialogue says:

      Oooh I like the big P thinking idea! I’m the governance – loving that one too – fits right in with my bossy, work personality! 😉

  11. You’re right, this is a big problem. And based on your comments, it seems like it happens everywhere. Unfortunately it just seems to be the way it is when you see “specialists,” whether for autism or other issues. My mom has multiple health problems and sees different doctors and offices each week, and always has to fill them in on what’s going on with the other people. It’s extra hard for us, since our little patients aren’t able to do the filling in and we have to wonder when and how to share all the information.

    • solodialogue says:

      Yes, I guess that is true of my mother as well… although as adults they can give their own history. With us – you’re right we have to speak for our kids and share all the information although the ways of doing so suggested here and at the link from Liz are wonderful methods of keeping everyone up to date as long as they are used!

  12. Lizbeth says:

    We have the same issues. Before we moved here, we lived in a very rural setting and I was A’s coordinator for care. I told people who was doing what and what I’d like to see done and where progress was being made and where it was not. I just assumed that role and it’s one I still do today. While not all people/care-givers like it, I am the best gauge of what works for my son and what does not. If they don’t like it then I move on. It’s a terribly hard job slinging it in the middle but it’s something that I do to help him. I always bring it back to my son and what he needs, end of discussion.

    I know that sounds harsh and I don’t mean it to be but at the end of the day it’s about our kids and how we can help them, not about who’s pissed that we didn’t try their therapy for lack of a better way to describe it.

    • solodialogue says:

      No that does not sound harsh at all. You are doing what you do for A out of love. Your priorities are perfect and you are strong. We do just end up as their automatic strongest advocates – I just want the way to do that that will be the most up to date, easily accessible and facilitate the professionals communicating amongst themselves. I think the private FB group is a great idea or the Google spreadsheet. (I think I’ve made it clear that we will not be returning to that speech therapist!)

      • Blue says:

        Just my 2 cents, but I think T’s therapists/assorted professionals would be more comfortable collaborating over Google Docs than over FB. FB is pretty private, and even if you didn’t personally “friend” them on there, I can imagine them being uncomfortable about having any connection between their personal facebook account and their clients/work.

      • solodialogue says:

        Good point. I can see that being the case as well. Thanks for all your valuable input! It is always appreciated! 🙂

  13. Laurie says:

    Have you thought about coordinating a team meeting once a quarter? Our ST actually suggested that to us, and sometimes will piggyback her sessions with our OT, cog or PT in order to dialogue with others about our daughter’s care. We also use AboutOne.com to compile reports and files. Still learning this one but they are extremely responsive to suggested format changes. The best thing my pediatrician ever did was to tell me on the first visit that I was the subject matter expert on my child and to always expect to know more about her condition than 99.9 percent of the doctors treating her (she has PWS along with a few other issues). Very empowering. I tell him the things I need and he prescribes them.

    • solodialogue says:

      Thank you for commenting Laurie! We do have team meetings between our ABA and school OT/Speech about once a month during the school year. This is almost a bit like just touching the tip of the iceberg, in my opinion. They just get started on sharing information but do not actually exchange things like brushing and joint compression. It’s almost as if OT and Speech just sit in on a progress report with ABA without equally give a progress report on my son at the same time. I never really got that empowerment from any of my son’s providers. They do treat me with great respect most of the time but I never really assumed that role as the coordinator was mine – clearly it became so – but I never knew I was stepping up for it…

  14. Teresa says:

    Who approves all these therapies? Insurance? School? If the school organizes it they should provide for a team meeting where each dept gets togwther with you. It really helps to coordinate goals. If you are a private pay individual you may still be able to request such a meeting. But no matter, as mom you have your child’s best interest at heart and most likely you are the best expert on your son. Continued success…and patience!

    • solodialogue says:

      School and private pay seeking reimbursement from insurance so – all of the above! So many great ideas here, Miss Teresa! I’m very excited to begin implementing a plan! 🙂

  15. Amanda says:

    Not sure if someone mentioned it already but maybe a website, where only you and the people involved could log on, may be a solution for this. It could be like a private blog, where the therapists/teachers could sign up for updates and be able to post comments. People might actually go for it.

    We stopped all therapies when my son started school. Some were good but hard to see benefit from only 45 minutes once a week. Others didn’t even know that autistics could speak.
    It doesn’t mean he stopped receiving help, it just means I became his therapist/coach for everything. I hasten to add that not everyone is called for that and not everyone should.

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  17. eof737 says:

    You have all the connectors to pull this together and educate/update everyone so they can collaborate more… How did his care get divvied out? Was it your decision or someone else’s and can it be corrected? Maybe you should share this blog post with all of his helpers… Then they might see what you see. Be strong!

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