I’ve been waiting on myself to begin. I knew it was time to get back to this and I knew it was time for a shift. I shut down the old blog, bought a new name, and created a new site. A new chapter. But how to begin, Becca, how to start. The pressure. Y’all are like,...
My mom died on April 1, just a little over two weeks ago. I don’t know which cliché to use – does it feel like yesterday or years? Both, I guess. My mom was a young 74 and did all the healthy things – the exercising, the kale, the vitamins, the check-ups. I look like...
Well, it had to come. Some of you readers have been with me for a while now. You’ve read these random blogs and followed along on Facebook as Jax came home from China, was diagnosed with all the things, and proceeded to grow up into a teenage boy. He’s gone from...
So we’re homeschooling over here. It’s going really well, I’d say. We have great people, Jax’s anxiety is at an all-time low, he’s happy, he’s inquisitive, and importantly, he’s learning things that are relevant to his 14 year-old-life and skills he’ll use for his...
I have sucked as a parent lately. Truth. 'Tis the season for holiday lights and wrapping paper and for mom to be a stressed out asshole. That should be a Christmas carol. “Jingle bells, jingle bells, jingle all the waaayyyyy. My mom’s annoyed at everyone, please bring...
Dear Jax,It's Gotcha Day, little dude. We adopted you eleven years ago today. I love this day, but this year's celebration is bittersweet. Your grandmother died on Friday night. Your dad's mom, Grandma Mary. This year's Gotcha Day will be a little less inflatable...
Johnny made it to his Army base on Monday. Other moms are messaging me tips to survive boot camp, linking me to Facebook groups, introducing me to people who can show me the ropes. It's lovely, but I’m in a different sort of situation. “Hi Martha with your...
A day or two ago, Jax had an appointment with a psychiatrist. Jax has never met this man before, but I have, and I like him a lot. He regurgitates mountains of stuff from memory, has a Harvard degree, and is smart, smart, smart. All good stuff when you’re a mom...
Johnny, I've been down at the Capitol this past week fighting for a bill that would expedite the adoption of older kids. I'm pretty invested in it because you and I went through this. We had nine months to make your adoption happen, and had I not already had a giant...
And I quote: "And after fourteen years of foster care, Johnny was getting all As and Bs in school, happily helping around the house, had checking and savings accounts, and looking for his first job - all within just a few months of being adopted into a family. "...
I've spent the last few days outlining an open letter to the person who hurt Jax. A real doozy of a piece, cleverly called "Dear Person Who Hurt My Child." I was going to write and publish it this morning, throw it all out there and let the internet lovelies react to...
The adult who hurt my son will not be charged. I'm a lawyer. I get it. There are no witnesses, no physical evidence, and Jax ...well, Jax isn't the best witness. At 13, Jax still believes that Noelle the Naughty Elf stole my car keys and tried to take my...
I am a Helicopter Mom. No shame here, no self-deprecating humor, there is really no other option for this child tornado of mine. Maybe helicopter isn't the right word, I think I'm more like the car with the flashing lights that travels behind the Wide Load truck on...
I was coming out of an Ace Hardware the other day - feeling super handy, I might add - and on the way to my car, I saw a woman standing by a table raising money. It was a legit 100-gazillion degrees in Phoenix and I was entirely prepared to do the polite smile...
I was sick this week. Throwing up throughout the night, curled up in fetal position at the base of the toilet, not sure how clean the bath mat is, I do not even care, I will never eat blue cheese in a salad again, SICK. Being sick as an adult is lousy. Being sick as a...
Dear Johnny, I know this isn't where you thought you would be at age 17. Still in the foster system, a day pass on your birthday, preparing to be shuffled around again, and then again and again. I know. As a child, you must have thought ahead to 17 and pictured your...
Last week, a family asked about adopting my foster son, Johnny. A family. Adoption. This was a big deal for a sixteen year old foster kid who moved in with me last month because he had nowhere else to go and had every intention of aging out of the system as an orphan....
I had a moment recently. My son, Jax, and I had been in the car running errands for a few hours. I was singing along to the Beatles channel when Jax said, "Mom, I'm hungry." Well, yeah, breakfast was a hurried cup of yogurt three hours ago so that's reasonable....
A teenage boy is coming to live with me. Today. In eight hours, I will be an official foster parent. It's been only a few months, but I have notes upon notes about my short experience so far with this child welfare system of ours. I can't wrap my head around how we...
Last week, I was in my favorite place in the world with my 15-person family. Every few years, we head to a ranch in the mountains of Colorado. We've been going here since I was a little girl, and there is truly no place I would rather be. I told my clients I was out,...
I volunteered to go to an education meeting last week with a foster kid. This kid was in high school and not too interested in me at first. I didn't blame him, I'd never met him before and this was a child who lives in a constantly-changing world with...
It was late-September of 2008 when we brought my son home from China, just two months before December and our sparkly, over-the-top, American-style Christmas season. My little boy had no idea what Christmas was. He had no idea who Santa was. Hell,...
This time of year, man. It’s stressful and chaotic and my annual intention of providing a Pinterest-perfect Christmas lasts about a day and a half until I decide that F-bombs will definitely help me assemble the gingerbread house. Ahhh, December. This year, the...
Jax’s eighth Gotcha Day is coming up. “Gotcha Day” is the anniversary of Jax’s adoption from China. It’s the day Jax became our son, and like good adoptive parents, we celebrate. Jax gets a few presents, we decorate, we eat pizza and cake, we participate in general...
I was at a Ross the other day. I love Ross. There is one by my son's school, and on the days I don't feel like laptopping at Starbucks, I walk around in their exceptional summer air conditioning while having riveting conversations with myself about my need for their...
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
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.
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.
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
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
Such a true post. It is hard to know that as a mom I am not the one who can help my son.
Such a true post. It is hard to know that as a mom I am not the one who can help my son.
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.
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.
i do feel your word.
i do feel your word.
Took the words out of my mouth and made them eloquent. Very well written.
Took the words out of my mouth and made them eloquent. Very well written.
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.
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.
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.
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.
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.
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.
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.
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.
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!
Happy Holidays! It’s awesome that you care enough to comment.
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.
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.
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.
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.
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!
Happy Holidays! It’s awesome that you care enough to comment.
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.
This made me cry. Honest to God, this made me cry. Can I post this?
please feel free
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.
This made me cry. Honest to God, this made me cry. Can I post this?
please feel free
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.
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.
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.
.
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.
.
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.
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.
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
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
I may be way out of line here as I have only just bumped into your blog, but I was wondering, have you heard of Emma’s Hope Book? http://emmashopebook.com/
If you want to know about breakthrough, I haven’t come across better.xx
I may be way out of line here as I have only just bumped into your blog, but I was wondering, have you heard of Emma’s Hope Book? http://emmashopebook.com/
If you want to know about breakthrough, I haven’t come across better.xx
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
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
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
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