Tuesday, December 15, 2009

Social Skills vs Academics My Struggle with Priorities

EQ vs IQ an Autism Challenge

Today I heard about parents of a high school student who took their son off the diploma track resistant to surrendering their fight to have him meet the standard academic requirements. The work load was a major source of frustration that seemed to exacerbate the gap between him and the other kids. His therapeutic aid welcomed the change (which the school had been pushing for sometime) because he was strongly committed to focusing more on the social than academic success. I listened with sadness because I understand why families hold on to grades. I understand how hard it is to feel like we have left another piece of our child's shot at a "normal" life, behind.

Experts told me over and over “Don’t worry so much about his grades – they will come or not - his ability to socialize and develop friends and life skills are what's most important”. However, Nicky’s social skills were nearly non existent and seemed to progress so slowly that I grew to take great comfort in Nicky’s ability to do educational activities, even if they were rote. It was his knowledge of every animal, his incredible memory, his love of the ABC’s and his ability to read that gave me something to talk about.

It was in his exceptional skill with puzzles or the computer that let me brag about him. His rote/academic skills gave me something to say; not sports, his favorite new toy, or parties or what happened the other day with his friends. When it came to "academic" type stuff my child had peers and I too could measure his progress, like other parents. It was those skills, those moments that opened the door for us to participate in the “normal” club and lessened my ongoing grief.
And there was a bonus, Nicky's academic skills give me an opportunity to teach kids and adults that, yes my son has autism, but he is not retarded. He is more than they see and more than they think he is! I hold on to these moments, not just for Nicky, but because they give ME a feeling of normalcy and an escape from the painful reminders of my son’s autism.

Today socialization is still difficult. We barely find play dates. Nicky doesn’t initiate inviting kids over and for the most part kids do not invite themselves. I remember when his social skills team pushed me to get the neighborhood kids to come and play. I invited a neighbor - that I didn't really know - to bring her two boys, who were around Nicky’s age over for a play date. Disaster! We had a mix up on the time so when she arrived I was not home. A therapist was with Nicky but had not prepared him or set up activities. Unprepared for a change in routine and new kids Nicky proceeded to have a major tantrum and meltdown; which scared away the kids and the mom. They never accepted a play date again. I’ve invited another neighborhood boy over, but he’s not apt to accept the invitation since Nicky showed up naked at his house and commandeered his VCR, armed only with his blanket and the video he wanted to watch.

The kids from school are kind to Nicky, but he doesn’t get invited to hang out with them. I believe the kids like him, but he is not a kid who is out doing what other 11 year old boys do and he has never been the social equal of his peers at any age. His best friends are great boys who have some type of challenge, whose parents understand and encourage the friendships. Without them there would be nothing.

When Nicky was 2 I couldn't completely comprehended what the experts meant, but I get it now. If Nicky is the most brilliant person to ever walk the earth, and he can’t function in society; make friends, communicate with people, order food in a restaurant, eat with utensils, go independently to the restroom, ride a bus, get dressed, keep his cloths on, walk safely across the street, hold a job or cook his own food we all lose.

Nicky is 11, and the clock continues to tick. The edge his rote skills gave him in elementary school has faded. I am feeling anxious about him being ready for the world not the classroom. Next month Nicky will enroll in a basketball team. His male social skills therapist is going to work with him every week. I accept that Nicky won’t like it at first, he never does, but we are not going to let that stop us. I’m confident that if we can first just teach him to tolerate it he will slowly come to like either the sport of just being with the team. Both would be great, but I’ll gladly take either one.

So, the most important thing I can do – for both of us - is push him as hard as he can be pushed to learn how to function in this world. I have to remind myself every day what’s really important and I have to give others permission to remind me to, which they happily do.

and the journey continues :)

15 comments:

  1. Two steps forward, three steps back. That's what it's like, isn't it? I am so proud of Casey one moment--he belts out a song onstage, fearless, his pitch perfect. But then, the lunch ladies at school forget to pack his lunch for a field trip and when everyone else's lunch arrives and his doesn't, he throws a tantrum. At age 4, that's acceptable. But not age 14. Aiyiyi. I picture him in the workplace where something unpredictable happens...will he throw a chair at a fellow worker? Will he hurl his lunch tray on the ground and scream obscenities? If only this journey were easy or predictable...I sometimes console myself in that even the most "ideal" family, one with typical kids, can't predict that all will be well, either. We never know...

    ReplyDelete
  2. "This tugged my heart strings, Donna. I KNOW this drill so well. Nicky is lucky to have you as a mom and Evyn as his sister. Two of the most sensitive, generous souls on earth in his orbit."

    ReplyDelete
  3. Nealy Noe commented on your link:

    "Hey Donna, Nicky is far from retarded and actually only 33% of children on the spectrum have a dual daignosis of MR. On the other side of things 33% have above average to genius level IQ scores and more research shows that the Autistic mind is working in a new and exciting way. Nicky could be the next inventor of tomorrow's digital communication :)
    I love the blog and hope all is going beautifully for you family this holiday season."

    ReplyDelete
  4. Your paragraph that starts "The kids from school are kind to Nicky..." describes my son Andrew, who is 17. Actually, most of your entire post describes him. He's on the diploma track and the kids like him. The big challenge is that Andrew is "socially indifferent" and doesn't care about having friends. I talked to a professional casually about this and she told me that eventually he's going to find the group that he likes. It may take time because not many typical high school students are obsessed with game shows but we'll learn to be more patient. Andrew is happy and has a very positive outlook on life. He's not depressed--as we hear with some other kids his age--so we'll keep pushing as much as we can while still accepting what we have.

    Best regards,
    Phillip

    ReplyDelete
  5. Donna,
    I am so moved by you every time I read one of your blogs. You give so much insight into the process both parents and their children go though. You are a gift and a support to other parents that can follow in your footsteps.
    Thank you so much for what you give back.
    Debbie Moss

    ReplyDelete
  6. Hi Donna,

    I like to keep up with you and Nicky. It really gives me a lot of insight and understanding. I appreciate your ability to be so candid, for the benefit of the rest of us. Keep up the great work!!

    Happy holidays to you, Nicky, and the rest of your family. I miss you.

    ReplyDelete
  7. My little boy is two and showing a lot of the skills you talk about when Nicky was that age. Its scary looking ahead, but I look forward to reading all the same:) Jen.

    ReplyDelete
  8. Donna, I love reading your posts. I love the way you write. Your heart, passion and drive keep us ALL going. Never give up! Keep moving forward, it's not a sprint but a journey. I feel that anxiety with each b-day that passes, thinking if I can just turn back the clock a little and get some more time to get him there all would be better. But it's those little breakthrough moments when they say something, look at you someway that keeps us Mom's all going. Jaz told me, never give up Mommy, Never give up! Those are the words I LIVE BY! Love you, Kelly Crews

    ReplyDelete
  9. Thank you for your help!

    ReplyDelete
  10. I will not approve on it. I regard as precise post. Specially the appellation attracted me to be familiar with the sound story.

    ReplyDelete
  11. Amiable fill someone in on and this fill someone in on helped me alot in my college assignement. Say thank you you seeking your information.

    ReplyDelete
  12. Approvingly your article helped me terribly much in my college assignment. Hats off to you dispatch, intention look audacious for the duration of more related articles soon as its sole of my choice subject-matter to read.

    ReplyDelete
  13. Hi
    Very nice and intrestingss story.

    ReplyDelete
  14. finding friends and having "normal" friendship relations and rituals can be very difficult for our kids and sometimes not really wanted by our kids. My son is a very happy boy who has grown to enjoy having family over and being in crowds and absorb the atmosphere and vibes of family time and events. I don't think that he has a need for those types of "normal" friendship relationships but has formed deep bonds with those people that have been there for him as his aides and therapists and of course, his parents and sister. I think its important to ask our kids what they want and if they would like to participate rather than force an activity or relationship that they are not looking for or can't really handly in a "normal" way. If I see an interest, then I do try to provide those type of "typical" experiences but I do feel that its okay to allow our kids to experience them their way.

    ReplyDelete
  15. Wow, what amazing perspectives. Thank you so much for posting your comments.Donna

    ReplyDelete