To my Son’s Autism Therapists.

Hi Therapists,

I feel like I know you all pretty well now. You’ve been in my home with my son for almost a year. Four, five, six days a week, you’re here. You’ve seen me in my pajamas, watched me do laundry and cook dinner. I spend more time with you than I do with my friends or family. We chat, I sit and listen to the sessions, I ask questions.

But mostly, I watch. I watch you and my son, and I try to soak up what you’re doing, gauge what works and what doesn’t. This is your job, but this is very, very personal to me.

I know you went through a lot of training for this job. Some of you have advanced degrees and letters after your names. You speak in acronyms, take data, and analyze my son’s behaviors. You are competent and knowledgeable and educated. You are able to develop lesson plans, implement them in effective ways, and move my son from skill to skill. You are really good at your job.

But I wonder if you know what it’s like to be me. I wonder if you have given any thought to what it is like to parent these children you work with every day.

I’ll tell you that as a parent, it is tough to get your head around the fact that you have a child you can’t help. We special needs parents are forced to rely on others to provide the tools our kids need to reach their potential. “Here. I am handing over my heart and my soul, my absolute everything. I don’t even understand exactly what it is you do, but please make it your best. Please help my child.” It’s debilitating, really. You can help my son and I can’t. I wonder if you understand the importance, the weight of this.

I wonder if you know how much of a toll this takes. Did they happen to mention the tremendous strain we parents are under in all that training? We’re fragile. We’re scared. We’re struggling. We’re hopeful. We’re grateful. We’re really, really tired.

Do you know how much we have to fight for our kids? The biggest surprise to me in this special needs parenting world was how much I have to advocate for my son to people who should be on his team. Schools, therapists, doctors, insurance – you name it, it was probably a battle. Do you think I don’t know that you roll your eyes when I call? I do. Trust me, I would rather be the fun mom, the awesome mom, the mom that everybody likes. But my son can’t afford that mom so I am the mom who gets him what he needs. It takes an awful lot out of me, and some days, I don’t greet you at the door with a lot of energy. What you might think is crabby is really just empty.

Your training should have included how much this therapy costs. I’m sure it didn’t, but I’d like you to understand the sacrifices we are making to pay for all of this. You are worth it, I have seen it with my own two eyes, but it means we cut and save. Instead of a vacation, we pay for medical bills and insurance premiums. I work from bedtime to 2am so I can stay involved with what you do when you’re here, in my home. So I can be a part of my son’s progress.

I wonder if you know that placing this responsibility in someone else’s hands is terrifying. You are tasked with seeing my child’s potential, and reaching through thorns and brambles, through cuts and scratches, and bringing all that potential to the surface. You are tasked with nothing less than changing my son’s life. This might be the most important thing you ever do.

I want you – no, I need you to understand this. I need you to understand that every morning I wake up and hope for a breakthrough, and that every night I go to bed worrying about my son’s future. This is a lot of weight to carry. I have handed you a small portion of that weight. I need to know that your shoulders are strong enough to carry it.

Sincerely,
Becca

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50 thoughts on “To my Son’s Autism Therapists.

  1. As a physiotherapist & the sister of a special needs autistic child, I feel like I can relate to this deeply. I’ve seen what my mum has had to fight for whilst growing up and the impact it has on all the people surrounding the child. Your son sounds like he has one amazing mum who will do the very best for him no matter what. Keep fighting & know that your not alone 🙂 xx

  2. As a physiotherapist & the sister of a special needs autistic child, I feel like I can relate to this deeply. I’ve seen what my mum has had to fight for whilst growing up and the impact it has on all the people surrounding the child. Your son sounds like he has one amazing mum who will do the very best for him no matter what. Keep fighting & know that your not alone 🙂 xx

  3. Hi Becca,

    As I read this post, I thought of a million things I could say – the agreeing comments, the cliché phrases, the things that I can relate to. I am a Board Certified Behavior Analyst. I crossed tracks with behavior analysis when I chose to work in the field of autism. I “chose” working with people with autism because I grew up with cousins on the autism spectrum, including my cousin who is 7 days older than me and was diagnosed when we were 2-years-old.

    But this comment is not to talk about me. I love this blog, I really do. It’s raw, and real, and something that I think about on a daily basis. I try to tell the parents that I work with all the time that I am on their side… but I have been let down before, too, so I know people do not always stick to what they say. I work so hard to try to prove to these parents that I mean what I say. Why? Because, like you said, they are entrusting me with the well-being not only of their child, but also them and their family. It is not easy for us, which means that is it way more challenging for you. I can only hope everyday that I am making a difference in their lives, no matter how small.

    I would be honored if you gave me permission to repost this on my website (https://thebehaviorstation.com), as this perfectly aligns with our mission. All authorship and rights would remain yours, and we would post a link to this original blog. Can you please send me your contact information or email me at tiffany@thebehaviorstation.com?

    Thank you for sharing these words. I hope to help you continue to spread this message, as parents are the center of their child’s services. We cannot do our jobs without you!

    Sincerely,
    Tiffany

  4. Hi Becca,

    As I read this post, I thought of a million things I could say – the agreeing comments, the cliché phrases, the things that I can relate to. I am a Board Certified Behavior Analyst. I crossed tracks with behavior analysis when I chose to work in the field of autism. I “chose” working with people with autism because I grew up with cousins on the autism spectrum, including my cousin who is 7 days older than me and was diagnosed when we were 2-years-old.

    But this comment is not to talk about me. I love this blog, I really do. It’s raw, and real, and something that I think about on a daily basis. I try to tell the parents that I work with all the time that I am on their side… but I have been let down before, too, so I know people do not always stick to what they say. I work so hard to try to prove to these parents that I mean what I say. Why? Because, like you said, they are entrusting me with the well-being not only of their child, but also them and their family. It is not easy for us, which means that is it way more challenging for you. I can only hope everyday that I am making a difference in their lives, no matter how small.

    I would be honored if you gave me permission to repost this on my website (https://thebehaviorstation.com), as this perfectly aligns with our mission. All authorship and rights would remain yours, and we would post a link to this original blog. Can you please send me your contact information or email me at tiffany@thebehaviorstation.com?

    Thank you for sharing these words. I hope to help you continue to spread this message, as parents are the center of their child’s services. We cannot do our jobs without you!

    Sincerely,
    Tiffany

  5. I just sent your post to my two best friends my son has ever had, Kevin and Tim, my son is 6’3″ and 240lbs….and became violent during this growth period, they have stuck with Scottman thru thick and thin and literally have bled at his hands….but love him and are his buddies, I have expressed my sincere thanks to them many times….I just did it again with your words!….Thanks

  6. I just sent your post to my two best friends my son has ever had, Kevin and Tim, my son is 6’3″ and 240lbs….and became violent during this growth period, they have stuck with Scottman thru thick and thin and literally have bled at his hands….but love him and are his buddies, I have expressed my sincere thanks to them many times….I just did it again with your words!….Thanks

  7. Found your post on Huffington post and as a Speech Language Pathologist working in Early Intervention, your thoughts peaked my interest. I do not know what it is like to be in your shoes but I do try to understand, in fact I probably get too emotionally involved with my kiddos and their families. The snippet from your blog doesn’t give your voice justice. I had to come read several of your posts because I felt compelled to know more about your story.

    I can tell you that I feel some of your fear and anxiety. As well as I often worry about the kids I work with. I pray that I am doing the best I can for them and their families. I often spend many hours at night and on weekends thinking about those little ones that I am still having trouble getting to, or whose parents seem so overwhelmed by their child’s diagnosis, or scouring the Internet, professional blogs, and educational resources looking for new ideas, tips, or just an understanding of a want to do more than I can at times.

    Anyway I just want to say that you have been heard and I am sure your therapists know how you feel because as a therapist I feel the same way.

  8. Found your post on Huffington post and as a Speech Language Pathologist working in Early Intervention, your thoughts peaked my interest. I do not know what it is like to be in your shoes but I do try to understand, in fact I probably get too emotionally involved with my kiddos and their families. The snippet from your blog doesn’t give your voice justice. I had to come read several of your posts because I felt compelled to know more about your story.

    I can tell you that I feel some of your fear and anxiety. As well as I often worry about the kids I work with. I pray that I am doing the best I can for them and their families. I often spend many hours at night and on weekends thinking about those little ones that I am still having trouble getting to, or whose parents seem so overwhelmed by their child’s diagnosis, or scouring the Internet, professional blogs, and educational resources looking for new ideas, tips, or just an understanding of a want to do more than I can at times.

    Anyway I just want to say that you have been heard and I am sure your therapists know how you feel because as a therapist I feel the same way.

  9. Ms Masterson, I wish you well on your difficult, amazing, and inspiring journey with your son. I just wanted to offer some (perhaps) serendipitous information, in the outside chance that it may be of relevance or interest – regarding a rare form of autism known as Pitt-Hopkins syndrome.

    A picture of your son, shown in a 12/29/2014 Huffington re-blog of this post, had some notable similarities to a child featured in a recent Yahoo Parenting article posted on 12/04/2014: “The Intriguing Story Behind Behind ‘Peter Pan'”. Per that article, there are only about 500 known cases of Pitt-Hopkins syndrome, which is associated with a particular genetic variation. It has distinctive features such as curvy “bow-shaped” lips, drooping eyelids, short stature, and some personality traits that may be different from others “on the spectrum” – given that it’s a wide, wide spectrum, with as much variation as the unique people who are on it, and those who travel with them.
    The article:
    http://www.yahoo.com/parenting/the-intriguing-story-behind-peter-pan-104268162107.html

    If you feel that this comment is not relevant, or not otherwise of interest, please feel free to remove it.

    .

  10. Ms Masterson, I wish you well on your difficult, amazing, and inspiring journey with your son. I just wanted to offer some (perhaps) serendipitous information, in the outside chance that it may be of relevance or interest – regarding a rare form of autism known as Pitt-Hopkins syndrome.

    A picture of your son, shown in a 12/29/2014 Huffington re-blog of this post, had some notable similarities to a child featured in a recent Yahoo Parenting article posted on 12/04/2014: “The Intriguing Story Behind Behind ‘Peter Pan'”. Per that article, there are only about 500 known cases of Pitt-Hopkins syndrome, which is associated with a particular genetic variation. It has distinctive features such as curvy “bow-shaped” lips, drooping eyelids, short stature, and some personality traits that may be different from others “on the spectrum” – given that it’s a wide, wide spectrum, with as much variation as the unique people who are on it, and those who travel with them.
    The article:
    http://www.yahoo.com/parenting/the-intriguing-story-behind-peter-pan-104268162107.html

    If you feel that this comment is not relevant, or not otherwise of interest, please feel free to remove it.

    .

  11. As the husband of a Speech Therapist who works with many special needs children I assure you that she (and many others) care about the children and the families of the children she works with.

    Does she spend 24 hours a day with them like you do? No. But I will tell you she is at school from 7:30 until 6:00 or 6:30 Monday through Friday. She then comes home for dinner and is working until mid-night writing reports and developing therapy for 60+ speech students. Her typical week-end is spent at the kitchen table writing reports and developing therapy for her speech students. As my son and I were Chsitmas shopping these last few weeks my wife was at the kitchen table, again, doing whatever it takes to best serve her students. I assure you cares for her students and their families.

    Do we have the burden of the cost that your bear? No. However, my wife works for a public school – should I say “enough said”? She has a Masters in Speech and is SLP certified. She must continue to pay for her ongoing training and licensing. She must pay for virtually all her supplies, the school provides very little. I do not exagerate when I say this has run into the thousands of dollars. (Did I say she is on a public school salary?) She has foregone many personal opportunities to help her students – she, and her family, have made sacrifices so she can serve her students. I can assure you, the financial cost is not insigificant – but, she still does it, and would not do anything else.

    Does she bear the emotional load you do? No. But let me assure you – she does bear an emotonal load, not for one child, but for scores upon scores of them. This by no means is meant to lessen the value of your emoitional involvement as a parent of a special needs child. I know the emotions that comes with being a parent. But, I will admit that I can not put myself in your shoes. My wife will have lows and highs based on her student’s progress, as I am sure you have with your child’s lows and highs. She, as I am sure you are, is on an emotional roller coaster all too often.

    Does she deal with the administartive nightmare that you do. Likely, yes. For each of her 60+ students she is documenting EVERY thing said and done during, in preparation of and after sessions. All too often, Therapists must act like lawyers. All too often they must spend unheard of hours protecting the school system because of the one parent that will sue the school because their child’s progress is not at the level they want versus what truly can be reached. All too often therapists must be more concerned about this aspect of their job than providing the needed time with the students. I can tell you this, this part of the job, maybe I should say “Calling”, causes the most stress to a therapist than anything else.

    I appreciate your desire to get the best for your child, but do not do it at the cost of the therapists. They, as a whole, desire the best for your child. Is their level of commttmentthe the same that you have for your child? Absolutley not. If it was, there would be something wrong. But, you must appreciate that they have, and continue to, make great financial, emotional and time sacrifices for your child and every child they work with.

    Fight for your child, but remember that the therapists are on your side.

  12. As the husband of a Speech Therapist who works with many special needs children I assure you that she (and many others) care about the children and the families of the children she works with.

    Does she spend 24 hours a day with them like you do? No. But I will tell you she is at school from 7:30 until 6:00 or 6:30 Monday through Friday. She then comes home for dinner and is working until mid-night writing reports and developing therapy for 60+ speech students. Her typical week-end is spent at the kitchen table writing reports and developing therapy for her speech students. As my son and I were Chsitmas shopping these last few weeks my wife was at the kitchen table, again, doing whatever it takes to best serve her students. I assure you cares for her students and their families.

    Do we have the burden of the cost that your bear? No. However, my wife works for a public school – should I say “enough said”? She has a Masters in Speech and is SLP certified. She must continue to pay for her ongoing training and licensing. She must pay for virtually all her supplies, the school provides very little. I do not exagerate when I say this has run into the thousands of dollars. (Did I say she is on a public school salary?) She has foregone many personal opportunities to help her students – she, and her family, have made sacrifices so she can serve her students. I can assure you, the financial cost is not insigificant – but, she still does it, and would not do anything else.

    Does she bear the emotional load you do? No. But let me assure you – she does bear an emotonal load, not for one child, but for scores upon scores of them. This by no means is meant to lessen the value of your emoitional involvement as a parent of a special needs child. I know the emotions that comes with being a parent. But, I will admit that I can not put myself in your shoes. My wife will have lows and highs based on her student’s progress, as I am sure you have with your child’s lows and highs. She, as I am sure you are, is on an emotional roller coaster all too often.

    Does she deal with the administartive nightmare that you do. Likely, yes. For each of her 60+ students she is documenting EVERY thing said and done during, in preparation of and after sessions. All too often, Therapists must act like lawyers. All too often they must spend unheard of hours protecting the school system because of the one parent that will sue the school because their child’s progress is not at the level they want versus what truly can be reached. All too often therapists must be more concerned about this aspect of their job than providing the needed time with the students. I can tell you this, this part of the job, maybe I should say “Calling”, causes the most stress to a therapist than anything else.

    I appreciate your desire to get the best for your child, but do not do it at the cost of the therapists. They, as a whole, desire the best for your child. Is their level of commttmentthe the same that you have for your child? Absolutley not. If it was, there would be something wrong. But, you must appreciate that they have, and continue to, make great financial, emotional and time sacrifices for your child and every child they work with.

    Fight for your child, but remember that the therapists are on your side.

  13. I am writing a response to you as both a therapist who specializes in autism and as a caregiver.

    I first want to say that I have shared this with every professional that I hold in my network. Because it is responses like yours that remind me of two things: 1. Why I absolutely love my job. And more importantly 2. Just how important it is to remember that as behavior (fill in the blank of whatever title or certification you hold), our job is to treat EVERYONE involved.

    It saddens me to read some of your perceptions of our attitudes toward you. You say we are rolling our eyes when you call. I apologize on behalf of our community. No parent should feel that we view them as anything less than their child’s biggest advocate, cheerleader, and supporter. I can only speak for myself, but I know many other analysts and specialists who will stand behind me when i say this: we are not rolling our eyes. We understand the crushing responsibility you are handing to us. We understand that your main purpose is to advocate for your child. On a personal note, I wish all of my parents were that involved and motivated. My clients would make more progress, and things would be so much smoother. So please continue to call us. Continue to ask questions. Continue to learn. Because you are not bothering us. You are making things so much easier. The more you ask, the more you can stay consistent with us. That’s the goal isn’t it? Integration and collaboration?

    We understand the costs of interventions. Many of us work for small companies where we hold hats not only as clinicians but bookkeepers and accountants. We know just how much we cost you every day that we step into your home, or you step into our clinics. There is not a day that goes by when I am sitting at my desk pouring over staff numbers and insurance co-pays that I think to myself “how can we do this? How do my parents make this work?” Because I know. I know exactly what it’s like.

    As I stated previously I am a caregivers as well as a therapist. I am one of those individuals who has an alphabet soup after my name of credentials and advanced degrees. They mean absolutely nothing. I cannot help my son. How can I remain objective? So I hand him off to someone who can be. All of the knowledge, and time in grad school classes, practicums, internships: they’re useless. Even when I know what to do, I can’t. Because he’s my son. it is a crippling and debilitating feeling.

    Our shoulders are strong enough to carry the load, Becca. We are ready and willing to fight alongside you. Not all of us may know your exact situation, but we know the stress and pressure you are under. We feel it every day we see your child. As you said, it’s our job to pull your son’s potential to the surface. That means pulling you through the thick of it with us. That means keeping you informed. That means keeping your priorities within ours as well. You are not a burden to us. You are a strong parent that is doing the best that you can with what you have. And that’s all we can ask. Let us help you. That’s what we are there for. To help ease the load.

  14. I am writing a response to you as both a therapist who specializes in autism and as a caregiver.

    I first want to say that I have shared this with every professional that I hold in my network. Because it is responses like yours that remind me of two things: 1. Why I absolutely love my job. And more importantly 2. Just how important it is to remember that as behavior (fill in the blank of whatever title or certification you hold), our job is to treat EVERYONE involved.

    It saddens me to read some of your perceptions of our attitudes toward you. You say we are rolling our eyes when you call. I apologize on behalf of our community. No parent should feel that we view them as anything less than their child’s biggest advocate, cheerleader, and supporter. I can only speak for myself, but I know many other analysts and specialists who will stand behind me when i say this: we are not rolling our eyes. We understand the crushing responsibility you are handing to us. We understand that your main purpose is to advocate for your child. On a personal note, I wish all of my parents were that involved and motivated. My clients would make more progress, and things would be so much smoother. So please continue to call us. Continue to ask questions. Continue to learn. Because you are not bothering us. You are making things so much easier. The more you ask, the more you can stay consistent with us. That’s the goal isn’t it? Integration and collaboration?

    We understand the costs of interventions. Many of us work for small companies where we hold hats not only as clinicians but bookkeepers and accountants. We know just how much we cost you every day that we step into your home, or you step into our clinics. There is not a day that goes by when I am sitting at my desk pouring over staff numbers and insurance co-pays that I think to myself “how can we do this? How do my parents make this work?” Because I know. I know exactly what it’s like.

    As I stated previously I am a caregivers as well as a therapist. I am one of those individuals who has an alphabet soup after my name of credentials and advanced degrees. They mean absolutely nothing. I cannot help my son. How can I remain objective? So I hand him off to someone who can be. All of the knowledge, and time in grad school classes, practicums, internships: they’re useless. Even when I know what to do, I can’t. Because he’s my son. it is a crippling and debilitating feeling.

    Our shoulders are strong enough to carry the load, Becca. We are ready and willing to fight alongside you. Not all of us may know your exact situation, but we know the stress and pressure you are under. We feel it every day we see your child. As you said, it’s our job to pull your son’s potential to the surface. That means pulling you through the thick of it with us. That means keeping you informed. That means keeping your priorities within ours as well. You are not a burden to us. You are a strong parent that is doing the best that you can with what you have. And that’s all we can ask. Let us help you. That’s what we are there for. To help ease the load.

  15. I wanted to offer a perspective from a front line therapist who works in the schools and routinely deals with moms who pride themselves on fighting for their kids. While I appreciate the need to be extremely involved and a fierce advocate, it is often insulting and disheartening dealing with parents who feel we aren’t looking out for their child’s best interests and battle every decision. Giving therapists and a school team professional respect and the opportunity to prove themselves goes a long way. I didn’t go into this field because I didn’t want to help your child. Believe me, we all want him to succeed. It makes it infinitely harder when a parent makes the atmosphere one of distrust and doesn’t allow us to forge a path we feel is necessary and appropriate. As you eloquently pointed out, we have extensive training and knowledge, but it can be extremely frustrating when the perception is that you don’t trust us or that we aren’t doing the absolute best for your child. It weighs heavy on all of our hearts when we have parents who feel they need to be in a state of battle or dominance to get their child’s needs met. While mistakes may have been made in the past with other professionals, giving others a chance is extremely important. There have been countless times where the team felt strongly about something that was absolutely steamrolled by a parent assuming we were trying to pull one over on them. It’s never good when staff have anxiety and cry after meetings because we feel parents think we don’t love their child or aren’t doing everything possible. Newsflash: we take your child’s successes or failures personally and want them to succeed as much as you do. It is exhausting work, and frankly dealing with parents is the worst part of the job.

    1. Show the parents you are trustworthy and they will trust you. We are used to fighting because, frankly, we have to most of the time. The IEP process is, unfortunately, adverserial. We could use a team member on our side. If that’s you, let them know.

      1. That’s the problem…. Many parents treat professionals as untrustworthy until proven otherwise and being human, we take it personally. Imagine being treated as someone who is incompetent or not invested in the success of a child without any evidence. That creates a less than optimal atmosphere for collaboration and dialogue. Believe me, no one is in this field for the money or glamour. We are here because we feel compelled to nurture and help. I am not looking to create animosity, I am looking for a solution where we can all work together in a positive and collaborative manner. I can honestly tell you that I and most of my colleagues will avoid interaction with adversarial parents as we feel always on the defensive. We will provide the services your child needs, but honestly our wings and creativity are clipped per se. On the other hand, when there is a parent who is highly involved, but not litigious or adversarial, there is an ongoing dialogue and interaction. These are the cases where we can think outside the box, and see our biggest successes. Just food for thought…. I am not discounting the fact that many parents may have had bad experiences with professionals, but painting ALL of us with that broad brush hurts the very child we are all trying to help in the long run.

        1. I appreciate your thoughts and agree with you. But I think you misunderstand my post. I’m not making any statements at all about therapists – I’m making a statment about what it is like to be a PARENT to these kids. I’m sure your job is tough. But it’s not as tough as mine.

          1. Agreed. I read blogs like yours to make sure I keep a parent’s perspective in mind. Just also wanted to open dialogue to improving the therapist/parent dynamic. Happy holidays!

  16. I wanted to offer a perspective from a front line therapist who works in the schools and routinely deals with moms who pride themselves on fighting for their kids. While I appreciate the need to be extremely involved and a fierce advocate, it is often insulting and disheartening dealing with parents who feel we aren’t looking out for their child’s best interests and battle every decision. Giving therapists and a school team professional respect and the opportunity to prove themselves goes a long way. I didn’t go into this field because I didn’t want to help your child. Believe me, we all want him to succeed. It makes it infinitely harder when a parent makes the atmosphere one of distrust and doesn’t allow us to forge a path we feel is necessary and appropriate. As you eloquently pointed out, we have extensive training and knowledge, but it can be extremely frustrating when the perception is that you don’t trust us or that we aren’t doing the absolute best for your child. It weighs heavy on all of our hearts when we have parents who feel they need to be in a state of battle or dominance to get their child’s needs met. While mistakes may have been made in the past with other professionals, giving others a chance is extremely important. There have been countless times where the team felt strongly about something that was absolutely steamrolled by a parent assuming we were trying to pull one over on them. It’s never good when staff have anxiety and cry after meetings because we feel parents think we don’t love their child or aren’t doing everything possible. Newsflash: we take your child’s successes or failures personally and want them to succeed as much as you do. It is exhausting work, and frankly dealing with parents is the worst part of the job.

    1. Show the parents you are trustworthy and they will trust you. We are used to fighting because, frankly, we have to most of the time. The IEP process is, unfortunately, adverserial. We could use a team member on our side. If that’s you, let them know.

      1. That’s the problem…. Many parents treat professionals as untrustworthy until proven otherwise and being human, we take it personally. Imagine being treated as someone who is incompetent or not invested in the success of a child without any evidence. That creates a less than optimal atmosphere for collaboration and dialogue. Believe me, no one is in this field for the money or glamour. We are here because we feel compelled to nurture and help. I am not looking to create animosity, I am looking for a solution where we can all work together in a positive and collaborative manner. I can honestly tell you that I and most of my colleagues will avoid interaction with adversarial parents as we feel always on the defensive. We will provide the services your child needs, but honestly our wings and creativity are clipped per se. On the other hand, when there is a parent who is highly involved, but not litigious or adversarial, there is an ongoing dialogue and interaction. These are the cases where we can think outside the box, and see our biggest successes. Just food for thought…. I am not discounting the fact that many parents may have had bad experiences with professionals, but painting ALL of us with that broad brush hurts the very child we are all trying to help in the long run.

        1. I appreciate your thoughts and agree with you. But I think you misunderstand my post. I’m not making any statements at all about therapists – I’m making a statment about what it is like to be a PARENT to these kids. I’m sure your job is tough. But it’s not as tough as mine.

          1. Agreed. I read blogs like yours to make sure I keep a parent’s perspective in mind. Just also wanted to open dialogue to improving the therapist/parent dynamic. Happy holidays!

  17. As an RECE who has done a lot of work with children who have special needs – I can tell you that in our training yes we do receive hours and hours trying to become competent and understanding of the feelings parents go through. But you are right the best we can ever do is hope to show empathy – we will never truly understand what a parent goes through on a daily basis – but we can try. As for the cost – many of us work solely based on passion the cost of things such as therapy and daycare and specialized programs is high ridiculously so – we are aware of this, but it should be recognized that we don’t cash in on it. In fact most of us make under minimum wage regardless of working over-time, doing things outside of our job requirements and trying to make a difference – it hurts to think that someone feels this way about the work we do.

    1. From the parent’s point of view.. we realize that many of you put your heart and soul into what you do. I have personally watched my son’s therapists bend over backwards for my son and other children she helps. It is seen, it is appreciated. 🙂

      The flip side that I think might be part of what’s mentioned above is that some people (mainly the school in my case) feel like we should just instantly do everything, have everything etc. Both of my boys need weighted vests. I made one last year when I only had one child in school but purchased one this year. They want me to purchase or make another one. I’m now a single working mother without the time or the resources to purchase said vest but they stay on me about it. Sometimes making me feel quite inadequate for not being able to afford some of the things they insist I get. Then there is the outside therapist (not one specializing in OT/SLP etc) that analyzed my oldest child on the spectrum after he was having issues at school. In a round about way- I’m not doing enough, what I’m doing I’m not doing right. You name it. So some of you are wonderful, in fact I’d venture to say most of you are fabulous. Some are not. Some make us feel very low.

  18. As an RECE who has done a lot of work with children who have special needs – I can tell you that in our training yes we do receive hours and hours trying to become competent and understanding of the feelings parents go through. But you are right the best we can ever do is hope to show empathy – we will never truly understand what a parent goes through on a daily basis – but we can try. As for the cost – many of us work solely based on passion the cost of things such as therapy and daycare and specialized programs is high ridiculously so – we are aware of this, but it should be recognized that we don’t cash in on it. In fact most of us make under minimum wage regardless of working over-time, doing things outside of our job requirements and trying to make a difference – it hurts to think that someone feels this way about the work we do.

    1. From the parent’s point of view.. we realize that many of you put your heart and soul into what you do. I have personally watched my son’s therapists bend over backwards for my son and other children she helps. It is seen, it is appreciated. 🙂

      The flip side that I think might be part of what’s mentioned above is that some people (mainly the school in my case) feel like we should just instantly do everything, have everything etc. Both of my boys need weighted vests. I made one last year when I only had one child in school but purchased one this year. They want me to purchase or make another one. I’m now a single working mother without the time or the resources to purchase said vest but they stay on me about it. Sometimes making me feel quite inadequate for not being able to afford some of the things they insist I get. Then there is the outside therapist (not one specializing in OT/SLP etc) that analyzed my oldest child on the spectrum after he was having issues at school. In a round about way- I’m not doing enough, what I’m doing I’m not doing right. You name it. So some of you are wonderful, in fact I’d venture to say most of you are fabulous. Some are not. Some make us feel very low.

  19. What a truly amazing and accurate letter. It is because of all of the reasons that you listed that I went back to school to earn my masters degree and work towards becoming a BCBA. I am a parent of a special needs child and truly value the importance of celebrating the small gains.

  20. What a truly amazing and accurate letter. It is because of all of the reasons that you listed that I went back to school to earn my masters degree and work towards becoming a BCBA. I am a parent of a special needs child and truly value the importance of celebrating the small gains.

  21. We haven’t had therapy outside of school in several years. I felt this way during the years of feeding therapy. You, my friend, have a gift. Well, lots of them. First, the gift of words. Secondly, the gift of what sounds like an amazong team you’ve worked your but off to assemble. Third, perspective. Finally, and most importantly, you have the gift of an amazing son. Xoxoxoxo

  22. We haven’t had therapy outside of school in several years. I felt this way during the years of feeding therapy. You, my friend, have a gift. Well, lots of them. First, the gift of words. Secondly, the gift of what sounds like an amazong team you’ve worked your but off to assemble. Third, perspective. Finally, and most importantly, you have the gift of an amazing son. Xoxoxoxo

  23. oh we have had 100% different experiences with therapists, but this gives me hope that at least some families are getting what they NEED and just not what the therapists feels like that day.

  24. oh we have had 100% different experiences with therapists, but this gives me hope that at least some families are getting what they NEED and just not what the therapists feels like that day.

I love the comments!