Parents Advocating for Special Services in Education (PASSE)

I found this online and thought it said volumes. I know parents of kids with all types of disabilities feel at least some of these. To all our members out there, keep your chins up, and know you are doing a great job!

10 Things Parents of Children with Autism Wish Teachers Knew
By aspecialspac | Posted 7 hours ago | West Virginia

1. I’m sorry.
I will say this to you probably weekly if not more. And I really am. I’m sorry.
I’m sorry because I am the reason you have my child in your class. I fought for him to be mainstreamed because all of the doctor’s and specialists told me that being in a least restrictive environment among peer models would be best for my son’s development.
I’m sorry because I know that you aren’t trained for this.
I’m sorry because I know you’ll have 25 kids in your class, all with different academic and social and behavioral abilities and you’re going to have pay special attention to my son.
I’m sorry because you are going to have to deal with his behaviors.
I’m sorry for every day he acts out or hurts another child or melts down in your classroom.
I’m sorry because I don’t have all the answers.

2. I am my child’s advocate.
Before I even knew what autism really was, I was directed to the IDEA and told to fight, fight, fight.
Before I fully comprehended what perseveration was and what stimming was and what near senses were, I was in meetings with the school, huge binder in hand, the IDEA printed and 3-hole punched and highlighted.
And I fought. I got what the experts said my child needed but I got it at the expense of relationships with the school.
And I realized that a collaborative relationship was much more advantageous to me and the school and my son than a contentious one. I still advocate. But my son is going to be in this system for a long time and I want all of us to work together for his best interests. If that fails, I can fight. I’d rather not. I would much rather work with you.

3. IEP Meetings SUCK!
I will be there alone on behalf of my son.
7 or 8 people from the school system will be there on behalf of the school.
You will all go around the table and tell me all the ways that my son is lacking. You will tell me this his motor skills are poor, that his pencil grasp isn’t the proper tripod, that he is impulsive, that he annoys the other kids, that he has a hard time paying attention, that he talks when he’s not supposed to and won’t keep his hands to himself. Everyone will tell me all of the negative things about my child.
That’s the purpose of the IEP Meeting. It is meant to define the areas of deficiency so that a plan can be made to deal with, work with, and accommodate my son.
I will, once again, tell you that “I’m sorry”. I will walk out of that meeting the same way I walk out of every IEP meeting… in tears and feeling defeated. Which is honestly the last thing a parent with a special needs child needs help feeling. We feel defeated and helpless and sad every single day.
Next time you participate in an IEP Meeting, tell the parents the good stuff too. And let them tell you the amazing things about their child. We know about the problems. We really need to hear the victories.

4. I am not excusing his behavior, but there are excuses for his behavior.
I can’t tell you how many times I have heard “You’re such a great mom. We’re so glad you’re not one of those who is always blaming your child’s behavior on his disability”. Do you know what that does to me?
There is a reason that he did what he did. I would like to explain it to you so that you can be aware of the underlying issue and help him avoid it next time. But I can’t, because you will view that as me excusing his behavior. So, “I’m sorry” is what I’ll say. And I’ll say it again tomorrow because you won’t let me tell you how to make sure the behavior doesn’t happen again tomorrow.

5. I don’t know why.
“Your child stabbed another child in the hand with a toothpick on the bus. Why did he do that?”
“Your child started pushing other children in the lobby of the school while waiting to be dismissed to his classroom. Why?”
I don’t know! I need you to tell me more. I need to talk to my child. I will need to ask him the same question in several different ways to make sure he understands what I want to know. I’ll need to probe.
You can do this too, you know. It takes time and I’m sorry because I know you’re busy but together we can figure it out.
Why did my child stab the kid on the bus with a toothpick? Because the kid told him to. I’m sure the other child was kidding. But my child is incredibly literal. He will believe anything you say. And he will take you at your word. His thinking is concrete. He won’t distinguish any social nuances and he will be confused when he gets in trouble because he was just doing what he was told to do.
Why was he being aggressive in the hallway? Because he was in the middle of a huge, loud, sensorily overwhelming group. Let him wait somewhere else and you won’t see these behaviors. So I don’t always know why. But we can figure it out together.

6. I want to communicate with you and I want you to communicate with me.
Often. A lot. As much as possible. This brings us back to #1. I’m sorry. I know you’re busy. But I need to communicate with you. Call me. Email me. Send me notes. Tell me, PLEASE tell me when he has a great day. Tell me why it was great. Tell me when he has a rough day and let’s spend some time talking about it. I think if we can put our heads together we can figure out why it was rough and come up with a simple solution so tomorrow is better.

7. I want to help you.
I want to be your partner. It absolutely does take a village to raise a child and you and I are in the same village. I know how busy you are and how dedicated you to are teaching our children. Let me help make it easier for you by sharing with you simple ways to help my son.

8. I want you to help my son.
There are some really easy ways for you to do that.
Tell him very simply and directly what you want. Then tell him what is going to happen next. Give him time to transition.
He is very literal. When you say "just a minute", he will start counting.
Pay attention to the signs that something is wrong. If he's fidgeting or rocking or hitting himself or acting wired, he is feeling anxious and overwhelmed. Give him time and space to work through that.
Look for sensory issues. Your classroom is a very uncomfortable place for him. The lights and clocks and kids all hurt his ears and his eyes. When these get overwhelming he will act out.
Provide him a quiet space. This will help him calm down when he feels overwhelmed .
Help him transition between activities. Always give him a plan B.
Help him understand the inappropriate behavior in matter-of-fact way and tell him you understand. Help him learn how to handle it better next time by showing him.

9. Love my child and see him as an individual.
Please don’t define him by his diagnosis. Look for his strengths and you will find them. Every child with autism is different. So please see him for the person that he is and help him become the very best he can be.
I place him in your care 5 days a week in an environment that I know is difficult for him. At home I can protect him, care for him, understand him, work with him, support him. I need you to do the same when he is at school. When you really see him, you will realize what a hero he is for simply waking up every day, putting a smile on his face, and walking into your classroom.

10. Believe.
Believe that you can make a difference for my son. Encourage him to be the very best he can be. Help him believe in himself. Help his classmates believe in him too. Believe that he can achieve great things. He has already achieved so much. Believe that he will achieve so much more.

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