the need to know

It is 3:00 am.  I have been up for hours.  I have had a week from hell, on many levels both personally and professionally and because those realms of my life often interlace I am in a spiral of madness.

I sat with parents this week in many meetings about their children with autism.  I can totally understand their grief, as I too experience it.  Sure we could banter back and forth about whose child is more impacted…..yeah, I don’t know what it would be like to have to use sign language or PECS to communicate with my daughter like some do, but that doesn’t lessen the impact for me or my dreams.

What hurts my heart so badly, is the process in which parents are told that there child’s intellectual capacity is limited and then what we as professionals do with that information. 

At one point many years ago I was the parent sitting around the big table and I heard the words ‘mentally retarded’ and oh yah! I was pissed at the man delivering the news–how dare he be so callous, so raw.  Yet, the seed was planted.  Years later when further testing was done and those words came back to haunt me, my reaction was softer, was more open to hearing.  I realized that I needed to hear those words.  If the issue was danced around the first time, I would not have been able to hear it years later and we would not be where we are today, on all levels.

So as I sit and listen to the issues being danced around in meetings on other children, I am so saddened and so frustrated that we are really doing an unjustice to this child as well as the parents.  The parents need to know how this will impact the child.  That does not mean for one second we give up hope or we stop teaching—no, it means that we are reasonable, we are truthful.  We build skills that we know the child can use and grow on.  Do we continue to bang our heads on the wall trying to get a 12 year old child to read/write that is functioning at age 3 when we could be working on functional skills?  The clock is ticking.

I had the honor of knowing a young man that I met when he was in 7th grade and his Asperger’s was getting into the way of him being succesful at school.  I was his 1:1 para for a few months, eventually he built skills to be more independent with emotional regulation, anxiety, organization, etc….and went on to be fairly successful (academically).  Last spring, I cried when I watched him walk across the stage to get his diploma.  I was proud, yet frightened for his future.  Many academic eggs were placed in the basket and while social skills were worked on some, it was the academics that were pushed.  This young man chose to not participate in the post high school transition services until age 21 that would have offered him living on your own skills, employment skills, social skills etc….

He is now on his third job within 2 months.  He can’t keep a job. And he has average intelligence.

 I would guess it isn’t because he can’t do the job…. he can’t do the social skills and the problem solving.  Those were the skills that were were considered ‘after the academics’.  Teachers didn’t want him to miss that film on Ancient China, because that is applicable, where learning to relate to peers is just so unneccessary..  sarcastic, yes!  bitter, yes!

So how does all of this tie to me, personally?  My daughter, whose intellectual capacity is limited, is heading to high school.  Will she be spending her time doing meaningless activities for the ‘credit’ or will she have an opportunity to experience peer interactions, problem solving?  Will a para solve the problems for her, so that her behavior is “fine”?  Will the need for a credit overcome the opportunity to learn meaningful skills?

If we as parents and professionals cannot face the reality, regardless of IQ or adaptive scores, that these kids need meaningful and functional skills, we are not doing justice. 

I can’t be part of that process anymore.  Parents need to know.  Teachers need to know.  Skills need to be built.

It is time for me to look for another job.  Perhaps one where I can serve coffee with a green apron and a smile.

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6 thoughts on “the need to know

  1. How hard to feel stuck in your job and wanting to do the right thing and being forced by the system to do something else. I hear Starbucks is in trouble right now, so maybe you can stick it our where you’re at until they recover. ;-)

    Side note: Sunday? What time are you teaching yoga. We may be at my mom’s in time for Bronco game at 11. I would love to see you!

  2. The school systems need more people like you, so please don’t give up as much as the “green apron” is calling. :)
    I also appreciate someone who will be straight-forward with me, as hard as that is to hear (or to give). Thanks for all that you do!

    Awwww, thanks. It will be a better week I am sure….:)

  3. As a parent of a six year old boy with autism, who also volunteers as a parent member with my school district, I too see a lot around the big table.

    Thanks for the wake-up call. Parents do need to hear it. My question is “when”? I agree that the first time the blow is dealt, it isn’t truly heard. So I guess it must be said early on. Yet, I wonder at what age should the decision be made to depart from the “hope” of an academic journey and to go down the life skills path instead? (Obviously the 12 year old functioning as a 3 year old missed the boat. But what about a 6 year old functioning like a 3 year old?)

    I agree with you. I was just wondering how and when to deliver this to the parents.

    I think as parents we need to take the time to grieve, to process so that we can continue to see our child as the child first, the autism second. For me, hearing the IQ numbers both as a young parent and also when my girl was young was hard….but needed to be heard. I continued to push her academically until about 6th grade when I saw the stress, anxiety and total sense of failure from her. It was then that I pursued functional and meaningful life skills, but more important than that—she began learning in relation to peers, not as adult directed. She is learning to problem solve and to look around to see what others are doing rather relying on a teacher or aide to tell her what to do. This has increased her success both in the regular ed classroom and the other areas of her school day; job, lunch, pe, etc….SHE feels good about going because what she is doing, she is capable of doing well.

    I don’t know when the right time is, for me it was a wake up call to see the kids after high school lacking skills and having such low self esteem. I want happiness. I want her to feel good about herself. I believe, that for her to feel ok with who she is, I have to first be ok with it….:)

    many wishes and blessings as you embark on the journey.

  4. Stacie-
    All I can say is wow! I have always seen you as having something special. It may seem like so much working with children with autism and having a child with Autism. Both are challenging and rewarding. You have the unique opportunity to take from one area and use in the other. What you know about being the parent helps you in your job and what you see in your job helps you to be a better parent. L is lucky to have you and while she may not tell you, I think she knows it.
    It’s funny because I was probably one of the people sitting around that big table back in the beginning and while I always thought about what I was saying and how I was saying it, it is hard to know as each family is in a different place in whether they are ready to hear, accept, understand, etc. Now, being a parent, I have new perspective. I have yet to decide if that will make me better at it, but I definitely have more to think about and pull from the next time I get around the table.

    You have given me so much to think about today! See you Sunday!

    Heather

  5. Hang in there girl! We need you!! The students need you! You are an inspiration, and burnout is normal, yet nevertheless easy. Stick it out, it is becoming challenging for a reason – and you will find the light. Come by and hang out with JR and me for a morning! I think you will have a different perspective! See my comment to you on Facebook – JR is so amazing!!!

    Tammy

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