My goals for my daughter have completely changed since she was first diagnosed with Autism more than nine years ago. I have been thinking about goals a great deal because her IEP (Individualized Education Plan) meeting is coming up and for those of you familiar with IEP meetings, it’s all about goals, both long-term and short-term. The parent’s goals, the teacher’s and therapist’s goals, everyone’s goals are discussed and written down. Except for Emma’s. What are Emma’s goals for herself? For those who have children with either spoken or typed language this is an easy enough question to ask. For those of us whose children do not it gets a bit more complicated. Still, I plan to ask, even if I do not get an answer, whether verbally or typed, I will ask and I plan to talk to her about her IEP and what that means as well. I may even type out some of the goals we are thinking about and ask her if she agrees with them.
I have to admit that sometimes when I speak to Emma about things, whether it’s about privacy, our bodies and bodily functions, the power of saying no, the importance of self and self-determination, or something like explaining what is going to happen over the weekend or asking her what her goals are at an IEP meeting, I catch myself wondering if she really understands. What I have learned, what I continually remind myself is that it’s okay to wonder, it’s okay to feel all those feelings, but it’s not okay to act or behave as though she does not understand. I have to speak to her as though she does understand, even when I don’t know that she does. In the end I have to do this, because to believe that she can’t/ won’t/ doesn’t understand and to be wrong is a risk I cannot take.
Emma's Hope Book 
You are such a good Mama.
Aw.. thank you Shenny..
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I agree. It’s far too big a risk. I think you’re doing exactly the right thing.
Thanks. Appreciate the support and encouragement!
I agree with you 100%, Ariane. To just assume they don’t and then find out later how very, very wrong you were… is jut unthinkable. I talk to Lucas A LOT, about everything. And I always address him in the same regular tone I address my 10 year old NT daughter, or other adults for that matter. I will not disrespect him by baby-talking him, as I find it unbearably condescending.
As as result, I often wonder if I appear completely insane to other people, having what appear to be completely 1 way conversations with my 5 year old. To friends and family who know us, I am sure it must look a tiny bit as if I am delusional and just kidding myself, and to complete strangers it probably looks more as if my child is rude/insolent/disrespectful, and I am a doormat parent that allows him to get away with ignoring me. But the truth *I* know, is that I am certainly no doormat (anyone can tell you that!) and Lucas *absolutely* has receptive language. And I know, and respect, that he has sensory issues that can distract and overwhelm him, in addition to not being able to summon expressive language the way the average person can.
Most people are not in our daily lives, so they only witness snippets of mine and my husband’s interactions with our kids. It’s really not enough to get the whole picture. I have never really let other people’s perceptions or opinions bother me much about anything, but it does make me a bit sad at times to know that our family members (who are awesome and love my kids terribly) will never truly see/know the level of love and communication that exists in our house. Not really. The day unwinds at its own pace in the security of our home, and my kids are, for the most part, happy and full of affection. There is a TON of horseplay, cuddling, learning, and growing that happens in a family’s home, that outsiders will not always be privy too.
I guess, in my distracted, long-winded way (hehe) what I am trying to say is that just because others cannot see it, don’t ever doubt what YOU see in Emma. Keep including her and talking to her and, one day, if she has a strong opinion about it and it’s important, she will absolutely find a way to communicate that to you. And, later in life, she will remember and appreciate, and love you for the respect you showed her in her adolescence. Parents make the mistake of not really respecting their children’s autonomy and interest in their own destinies far too often, NT or otherwise. So, in my humble opinion, I think you are right to error on the side of respecting her wishes and assuming understanding. I mean, really, most NT kids don’t understand a lot we throw at them solely because they ARE kids after-all, but we continue to talk at them anyways, repeat when circumstance demands it, and hope for the best! Should parenting our ASD children with limited expressive speech be so different? ❤
About two years ago I started reading Em age appropriate books at night before she went to sleep. I remember thinking that she wouldn’t like it, that she’d want me to read the picture books she likes to look at. But she didn’t protest, in fact when asking her to choose between a couple of them she asked that I read the autobiography of Helen Keller. Later I asked her if she wanted me to read something else, but again she chose Helen Keller. I have spoken to her about a number of age appropriate topics and I know for an absolute fact that she understood, not because she responded with more than a nod of her head, but because she became very quiet and still. I know I am not wrong about this.
I know you are not wrong too. ❤
I had to have a *major talk* with my mother about not assuming that my younger cousin couldn’t understand what was going on and what people were saying around him, just because he was nonspeaking (at the time) and his behavior was erratic.
Sure enough, a year later, it’s totally clear that he understands a frightening volume of what’s going on.
Yes… I remind my daughter and all family members of this every chance I get!!!
It’s a difficult concept for many NTs to grasp. Good for you for continuing to remind them!
This is what I’ve been told by so many who are non-speaking, but who have learned to communicate through typing and now type about all those things they overheard when they were young and nobody thought they understood.
I think it is incredible that even though you may not get an answer, you still include your daughter in her IEP meetings. That really shows how much you care about her and her progress; especially how much you care about including her in her own goals, too. So many parents make the decisions for their child, and ultimately they will, but you at least are trying to include her, and that shows a lot about yourself. I feel like students are always dragged to their meetings yet have no idea what’s going on, and I feel that each student SHOULD know what’s happening in their educational life. Some students may even feel that they are doing better in an area, in which a teacher or parent may not see. Kudos to you for including your child in her IEP meetings, you are a good mother.
Thanks so much! Hopefully it will be a positive experience for everyone, but mostly for Em.
Does Emma understand passing of time on a calendar? If so you might use a 12 month calendar for each year of her life so far, putting pictures of Emma along the way. You might point out her surroundings, favorite toys, activities, etc in the pictures. If you have blank future calendars you could possibly show her – using a set of your own calendars with pictures of you – how you have hopes and dreams for the future. For example, if you hope to go to see an art gallery in May of 2013 you might put a picture of yourself and the gallery in May 2013. No idea if this might be helpful to you with Emma, but others have found it helpful over time. One little boy I worked with was able to show he wanted to learn to ride a bike by putting a picture of himself over the picture of his brother riding a bike. Until then nobody would have guessed because this boy showed no interest that anybody could see.
I love your picture idea! Just another way to help with bridging communication lines. My son is autistic and gets obsessed with clocks and schedules. I used schedule cards with my son for a while to help minimize his anxiety regarding trying to get everything finished that he needed to in a given amount of time. He no longer had to ask me all the time what he needed to do next. His need to constantly watch the clock has reduced. I am also autistic, and even though I am verbal, I have come to realize that I can communicate much better in the written form. My message is clearer. I can’t always find the words when I speak, especially if I haven’t scripted. My husband is an NT and he is a very emotional person. My very blunt way of speaking, and my issues with intonation, will lead him to take what I said in ways that it wasn’t intended. He, too, has found that writing helps him keep his emotions in check and he can articulate better. There are times we have conversations all in written form over Facebook chat and we are in different rooms of the house. I know it sounds weird, but I need quiet time away from everything so I can reboot.
Erin, my husband and I have done the same thing! We’ve even done this seated next to each other in the same room!
I don’t know that she does, Judy. But I love your suggestions here and will present these to her teachers as well. Someone who is a synesthete said they see a year as in the shape of a globe or clock. That each month is like a number on the face of a clock and as summer approaches the globe turns or the clock face lies down. Have you heard a year described this way before?
This is a great post and sums up my feelings about the situation exactly. It does bother me that we never asked Emma what her goals were in previous years prior to these IEP meetings. Thank god we’re doing it now, even though that prospect fills me with trepidation. What if she ignores our questions or her answers are unclear or seem unrelated? Yes, that’s going to bother us too, but at least we will have asked. More importantly, no matter what her response is, we still have to, “speak to her as though she does understand.”
After having read the post and written the above, the difference between parenting an autistic child and a neuro-typical child initially felt like we live in two completely different worlds. Want to know the goals of your 11 year old kid? Just ask them. But even though parents of neuro-typical children never have to wring their hands wondering what their child wants if they can’t verbalize it, they still have other concerns: Are their kids being completely honest? Are they saying what they think their parents want to hear? Are they giving in to peer pressure? Echoing the goals of their friends? Do they feel that their parents wouldn’t be supportive if they knew what they really wanted?
Different folks, different issues. Communication can be difficult at times, even under the best conditions. Parenting is hard. I’m just grateful to have a partner that even bothers to ask the tough questions. I’m doubly blessed to have a partner who will stop at nothing to find the best answers.
I understand this completely. Believe me that I experience great worry about my non-verbal kiddo and always fall into the trap of thinking how much easier things could be for him if he could just verbalize what he needs or feels. (He was doing what we call “swallowing his words” last night before bed, clearly trying to say something, with nothing coming out. That always kills me.) But then I have my NT 10 year old daughter, and we experience *exactly* what you described about the reliability of what DOES come out of her mouth! lol – gah. yeah, Parenting is hard. You guys come across as genuinely awesome parents though, BOTH of your kids are very lucky 🙂
Did you ever see the interview I did with Paula Durbin-Westby? She was so wonderful to interview and I posted it here and on HuffPo. She did a video of herself trying to speak. All that she was able to do was make a little peep noise. This is the link to Part I ~ http://www.huffingtonpost.com/ariane-zurcher/life-with-autism_b_1996962.html
and Part II is here ~ http://www.huffingtonpost.com/ariane-zurcher/life-with-autism_b_2005489.html
I DID!!! Actually, I think that post may have been the first time I ever left a comment because I was so blown away by her story and so thankful for you posting it. I remember being so excited that I forwarded links to her interview and video to EVERYONE. That video… was sooo like watching my son… I showed it to my husband too (of course) and he said it made him simultaneously sad AND hopeful. Sad, because we both hate that she still struggles with this in her life even as an adult, but hopeful because she clearly has a full life and is an amazing person despite the unreliability of her speech. 😉 Really glad you posted those links again, hope some new people will check them out too!
And I’m grateful to have such a wonderful partner who’s always supporting and encouraging all of us, not just me, but both our children too!
From all you have written about Emma in your other posts, I think she understands. My daughter is verbal and I know she understands but she has no interest in even reading her IEP. I’ve told her that she should know what is in there in case she gets a substitute staff member who isn’t doing what she needs. The only problem is that even if she knows, she isn’t able to tell people she doesn’t know well. We do tell her what is in the IEP so she has some idea. Hopefully she gets there one day.
Mandy I think that’s the best one can do.
I agree with Katrina:
“You guys come across as genuinely awesome parents though, BOTH of your kids are very lucky”.
It’s such an easy thing to do – to ask. But such a huge step to come to think of it.
That’s so true!
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Lovely post, Ariane!
My niece Therese, non-verbal with Rett Syndrome.. (http://marborro.wordpress.com/2011/06/08/happy-birthday-to-my-bebeto/) is now living with her real mom in the states. i only have the skype to be able to see her, to find out if she remembers her “Auntie Mama”.. i told my sister to try and talk to Therese like a normal daughter, like tell her stories about her day etc.. my sister told me, “she has a more complicated condition it is not that easy to converse with her”… i felt frustrated because she can just give her a chance, right? there’s nothing to lose if she’d treat Therese like a normal 14 year old teenager.. yeah, i remember all those IEPs and parents updates when Therese was under my care… not that i am saying that my sister is not doing a good job, she does and she is a really great mom to Therese,, i am just saying that, just because Therese is non verbal, it doesnt mean she cannot comprehend….. 😦 “meddling aunt”…