How can you be honest when it breaks your heart?
Today, I hesitate. There is a multi-page assessment sitting in front me waiting to be filled out. Within the pages are questions about my autistic son’s abilities, whose 18th birthday is only a few short months away. The questions range from communication skills, self-care to leisure. All 300 of them must be answered honestly. His future depends on it.
Honestly. That word has never seemed as big or scary to me, as it does right now.
While handing me the assessment, my son’s case worker stressed, “I need you to answer these honestly; meaning only mark down what he is proficient at today, not what he did a couple of times two months ago. So, from the time he wakes up to the time he goes to bed, these answers must reflect what he can do on his own without prompting.”
With tears welling up in my eyes, I lowered my head and sighed deeply. “That would probably just be…waking up.”
I’ll admit, that’s a terrible statement to make, but it’s the truth. The painful truth, that each day for the past 17 years I have tried to keep from consuming my mind.
Sure, he doesn’t get angry. He doesn’t mistreat people’s belongings. He is responsible. Those questions, he will score high on. However, the others – the skills that are essential for success and independent living – such as communication, social skills, self-care, and self-direction will score low, quite low in fact.
As much as I don’t like to admit it, that is the honest truth.
It’s nearly impossible to make me cry, but any meeting that pertains to my son gets me every time. It is so incredibly difficult and saddening to be honest about my son’s many weaknesses, when all I want to do is tell the world how amazing he is. He is amazing. Just not on paper.
So, with a deep breath I will complete that assessment. I will cry and I will keep going, just like I always have. And he…he will be just fine.
Me - Who am I? 
Wishing you strength as you tackle the 300. Very touching post.
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Thank you. I really appreciate that.
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OH you touched my heart! I can so fee the tender love that you have for your dear son and I feel your pain. Praying strength and peace for you! Thank you for sharing from your heart.
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Thank you so much. It pains my heart deeply, so I’ll take all the strength I can get. Thank you, again.
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I wish you the best of luck and I’m sending you positive thoughts.
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Thank you very much!
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You’re welcome!
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Oh MWAI, this got to me. Strength to you and your son. ❤
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Thank you. I appreciate that.
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So poignant. Wishing you both well. None of those evaluations can measure the depth of the heart.
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That’s exactly right. They cannot. There is so much more to all of us than what could ever be represented on paper.
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What a heartfelt and touching post. This really moved me. Your love for him shines out above all else. I wish you both strength and peace.
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Thank you very much. While everyone else came and went, and through the good times and the bad, he and I have always been together. I love him dearly and will forever be thankful for having this opportunity to be his mother.
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How blessed he is to have such a caring and devoted mother.
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We are going through exact same experience here. My son is in the 6th grade. He also won’t do anything without a prompt. I’m just back from the school meeting about him. Fortunately, for now, he has an adult assistant helping him through the day at school. The school keeps saying that the assistant is temporary. He struggles at the middle school which has all these transitions and a lot more kids than elementary. I cannot imagine what the high school is going to be like. The saddest thing is that there is no treatment and nobody can give any advice on what to do. I can feel your pain. Stay strong and hope for the better!
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I’m sorry to hear that you are going through this too. Teacher assistants are wonderful to have (when they actually assist) and my son has relied on them for most of the general-ed class he’s taken. Unfortunately, the amount of TAs are limited, so in some classes he’s been on his own. But, he only has 2 general-ed classes a semester, so I suppose it could be worse.
You are right that there is not a one-size-fits-all treatment. Each child is different and struggles in different areas. It’s a struggle for them and certainly a struggle for us. As parents, we want our child to succeed, so it’s incredibly difficult when we’re essentially helpless.
My son changed and learned a lot as he grew older, but even now at 17, he’s at about the 3rd grade level across the board. Even so, he makes me proud every day and I am so grateful to be his mom. He’s shown me the world in a way that only a few people have the opportunity to see. A beautiful, pure world.
You stay strong too! Remember that your child’s success in life can never be determined by that of someone else. Everyone is different. He is his own person, with his own future. He will be great!
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This is so heartbreaking. To make you write about the person you love the most in the world as nothing more than a set of skills he has, or does not. So unfair, and makes me worry if they see him that way, too, rather than the whole person he is. Hugs.
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Although I understand that they do it in order for him to obtain adult services, which he’ll need, it doesn’t make filling it out any easier. I hope that no one sees him purely based off of the skills he does and does not possess, but I imagine that many do. We are all so much more than what we are on paper. Thank you so much.
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Oh, my dear friend. I don’t really know what to say. I can feel your pain. I would love to just hug you right now. Sometimes it’s all we need. I send you a big hug!
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Thank you! I really appreciate that. The support from you and this great community here is truly wonderful.
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xoxo
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I really don’t know what to say. But your post had explain well how you feel. Wishing you and your son all the best.
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Thank you very much. I appreciate that. Also, thank you so much for the comment!
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I’m guessing you’ve already answered the questions by now and hope the had a section where you could add comments. Sending you warm hugs and prayers for strength and comfort.
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I did. Just completed it a couple of days ago. It was discouraging, but hopefully I answered the questions as accurately as possible. The skills he possesses around me are different than when he’s with others, and what he did yesterday he doesn’t necessarily do every day. So it was difficult, but it’s done. Thank you for the hugs and prayers. I definitely appreciate it.
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That’s so true. Honesty does hurt. I wish you all the strength
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Thank you very much.
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May I say that I completely understand where you are coming from. The horrible forms and the statistical truths will provide your son with supports. The heartfelt truths of your son are precious and are YOUR support. I wish you strength.
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Thank you very much. Yes, and that is exactly why, although it hurts to be honest, it must be done. He needs the support that these forms will grant him. His future heavily depends on it.
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