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Dear Service Provider: A Heartfelt letter from Parents

4/17/2018

2 Comments

 
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My son Richie (who happens to have autism) has been a client of many therapists, a patient of several doctors and he’s been seen or treated by other professionals throughout his life – since he was three-years-old to be exact. Many of them were amazing at their profession and many were not so great. I write this in absolute gratitude to the many service providers who chose a life of helping, teaching, and healing the lives of the many who need their help and expertise. I hope they read this and know that the difference they made in the lives they touched was because of how different they chose to be at providing quality service. They went above and beyond their call of duty. 
I also write this for the many long-time service providers who still care, but are a tad tainted by the bureaucracy they may have experienced over the years, leaving them frustrated and biding time until their retirement. Maybe you'll recognize a thing or two that might spark an assessment of your approaches. Finally, I write this for the new and unsuspecting service providers who are well-intentioned but perhaps ill, mis, or uninformed about how to work with families collaboratively and effectively. 

​Dear Service Provider,

 I thank you for doing your best in scheduling an appointment time most convenient for our family.

However, please try to stick to our agreed appointment day and time. If you’re not familiar with dealing with children with autism or other developmental disabilities, you may not realize that missing appointments or arriving late or early can disrupt their day and cause behavioral issues.  
​
I appreciate you for being the person who can help address communication and other speech related issues.
​
However, please don’t tell me that my child is disinterested in communicating, making friends, or being close to others. My child has a condition that interferes with his ability to do these things. Please don’t confuse his struggle with these abilities with his desire and need for them. 
​
I know that there are certain things you probably have to say during IEP meetings. Things you may be  required to say when funding gets in the way of your ability to provide services to all of your students who need it.  
​
However, please don’t tell me that with every service there is a beginning and an end. It’s my understanding that the related services in IDEA are based on need – not the length of service time. 
​

I know that you are well-trained in your area of expertise and that you probably know the information you're sharing with me like you know the back of your hand.

However, it is my hope that I learn as much as I can from you. Please come with resources, practical strategies and ideas that I can actually use to help reinforce your efforts with my child. I may not have access to visual boards, pictures, apps, or other items you’ve mentioned using. The more resourceful you are to our family, the greater the odds are for my child’s success. 
​
 I know that your ideas for toys, books and other items have been successful for your other clients and their families.

​However, please note that I might not be able to afford some of those items and there’s no worse feeling than not being able to help your child because you can’t afford what was suggested.  Perhaps you can offer resources on how I can borrow these items or maybe you know of sources of funding that can help my family with purchasing them.  
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​ 
I know that there might be times you won’t have the answer.

​However, please don’t deliberately speak to me in medical terms or jargon you know I probably won’t understand. Just be honest and transparent with me. Tell me you need to meet with your colleagues or do a little research. I know you’re trying to help us.  
​
I know that there will be times you may experience rough days with other clients and their families.

However, please don’t tell me about other parents who you think don’t care. In fact, please don’t speak poorly of other parents to me. It only causes me to wonder how unsupported those parents feel and what you might be saying about me to them.  
​
I understand that there are things I’m going to have to learn from and with you as we journey together to help my child learn and grow as a person.

However, please don’t leave me out of your ideas for strategy or planning processes. Please have faith in me enough to presume my competence in following your lead.  If you teach, model, and provide useful tips and information on how I can help my child, please trust that I will get it done. I want to help my child and I cannot do this without you.   
​
I know that data collection is crucial for strategy and program planning in general.

However, please help me by creating a document that is easy for me to capture and record all the information that is needed. Please be patient with me, time is never kind to me and I’m dealing with more than you can possibly imagine. 
​
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 It’s important to remember that as parents, we are smart, capable of learning, and essential to any program, process, or plan that involves improving our child’s education, behavior or overall quality of life. We will always admire the professionals who dedicated their lives to helping children like ours. Truthfully, it’s nice to know about the many credentials that follow your name as a respected professional in your field, but we’re more interested in knowing that you care.   We prefer knowing you care enough to do the little things that help us to move forward as a team. 
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Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!
An InLinkz Link-up

Sincerely, Christine SensoryFriends

2 Comments
Mommy Catharsis link
4/17/2018 03:41:00 pm

Yes! I relate to this in so many ways! My son is seven with autism and while we have also had some amazing doctors and therapists, we have had terrible ones too who have behaved in simply unprofessional ways. Thank you for sharing!

Reply
Full Spectrum Mama link
4/17/2018 04:02:07 pm

LOVE this post. Such a brilliant idea to juxtapose the respect and the realities...
And I so deeply related to much of it, particularly the financial stuff and the jargon...
Thanks and love,
Full Spectrum Mama

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    Author: Christine Goulbourne
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