Looking Not-So-Far Ahead

A quick look at my Amazon Wish List conveys what’s been on my mind lately: my son’s future. I mean, it’s obvious when you look at the titles –

Now that Nigel is fifteen (and a half), we really need to get going on his transitioning plan. But how? How do you do plan for adulthood when your high schooler has the emotional maturity of a ten-year-old? He talks about wanting to go to college, which is great. But how can I realistically plan for that when he can’t handle the modified workload of his freshman year of high school?

Yes, Nigel can progress. He has proven that over the years. He is handling things now that I would have never thought possible, even three years ago. So it is within the realm of possibility that three years from now, he could be going through the admissions process for college. But as much as I believe in my son, that’s a big maybe.

You see, Nigel lacks executive function. And I don’t just mean that it’s challenging for him. I mean that it’s pretty much nonexistent. This is why he requires one-on-one assistance in his classes and two study period pull-outs every day to do his regular classwork (with constant assistance). Every advancement he’s made in Boy Scouts is because an adult (usually me) has walked him through it, outlined the work for him, and kept him on track. He is unable to do it himself.

And so, I worry if college is a realistic goal for Nigel. He is certainly intelligent – he’s just not able to do the work, nor is he motivated to. And college is a lot of work. There are no IEPs in college, no educational assistants hovering over him to keep him focused. There’s no modified curriculum. I know that there are programs to help people on the autism spectrum navigate college as far as housing and living independently. But they don’t write the students’ papers. They don’t do the work for them. That’s what executive function is for. Either you have it or you don’t.

I suppose that it’s something he could be taught, but that’s one of the things I tried to do when I homeschooled him for a year and a half. I taught him how to do math problems step-by-step, how to write essays, organize his thoughts, and outline. And it didn’t take. I don’t think his brain functions that way. Perhaps he wasn’t ready for it at the time, but it wasn’t that long ago, and at this point, time is of the essence.

All I’ve ever wanted for my children was for them to feel loved and to lead happy, fulfilling lives. I know that doesn’t have to involve college, but Nigel’s dream of being an astronaut does. And there are times when I wonder if all the years of therapy got him to a really good point, but it’s not good enough. We got him to the point where he can communicate verbally and go to restaurants and grocery stores and interact with people and make a grilled cheese sandwich and ride his bike to school and back independently, but he can’t work independently. And while I am so happy and proud and grateful that he is able to do all those things that were impossible for years, that glaring difficulty remains. Once more with feeling: he can’t work independently. And I don’t know what that means for his future.

23 thoughts on “Looking Not-So-Far Ahead

  1. Anastasia

    I can’t imagine how stressful it must be for you, but I know that Nigel is a young man that makes goals for himself and accomplishes them, and any person with that determination will attain success, fulfillment and happiness in life, whether that involves college or not!

  2. Jess Wilson

    I can only imagine how scary this is when it’s so close. Hell, I spend my time terrified about it and my kid will be seven next month!

    But three YEARS is an awfully long time, luv. Where was he three years AGO? Hugely diffrent, right?

    Hugs.

  3. Paulene Angela

    Tanya, I’m sure you are reading my mind, the same thoughts are whizzing through my mind, anxiety is knocking me. I worry that I have helped my son too much and have made him robotic, but then my other signal comes in saying, “no Paulene you’ve guided him”, otherwise he would just live in cloudland.

    One issue I have really tried to drummed into my son’s school is the implementation of a daily diary, breaking the routine down into understandable fragments. To be honest I’m so woundup about the lack of cooperation from his school I could scream, they will not write in his diary, they will not give him homework!!! As usual it will be down to good old mum to solve this problem, until I can eventually move him.

    Does Nigel use a daily (by hour) diary, I mean with him making his schedule?

    I have found since implementing a year previous, house chores for Max I am now finding he is starting to remind me what we need to do! which seemed an impossibility a few years previously.

    Power to the parents, keeping fighting

  4. AmyLK

    His IEP can follow him through college. You should contact your Child Study Team to start the Transition evaluations that will help to create the IEP that will follow him to college. Also, contact your local Division of Vocational Rehabiliation Services Offices as they are supposed to be able to help with this as well. I live in NJ and there is a nonprofit parent adovcate network that helps us, http://www.spannj.org.

    Its very possible for him to go to college but he might need time between graduating from high school before he goes to college. anything is possible!

    Good luck!

  5. Carrie

    As you said on my blog, we’re on the same wavelength! I don’t have any words of wisdom, only a look across the “table” at you, that sits before me, in the same place.

    Love.

  6. Nicki

    Some colleges have programs for people with learning disabilities that work with them on staying organized, writing papers, getting tutoring, and stuff like that. Maybe Nigel would qualify for something like that?

  7. Carrie N

    Your posts leave me both hopeful and nervous for the future. I hope for Grayson to be where Nigel is one day. And then I see that you still face hurdles and I think of putting my fingers in my ears and chanting ‘I can’t hear you’. The hurdles keep coming, huh? That’s okay. It’s good to be prepared. I imagine we’ll be pretty good at getting over them by then, as you and Nigel are by now.

  8. Kim

    Being 10 years behind you on this road I have no words of advice to give you, though I wish I did. Three years is a long time though. You might be surprised at where he is in three years. He’s surprised you many times already and he seems to be a very determined kid.

    Hugs.

  9. Lex Savko

    Tanya, I have only five words of advice: Stay real and stay hopeful. I’m glad that there are others here with specific constructive advice beyond that. Good luck to both you and Nigel in facing this challenge.

  10. Holly

    In Mass. there are special needs colleges that help kids with autism, there must be some type of program in a college where you live?? A friend of mine has a son with asperger’s and he is attending one of these schools. His mother is nervous but hopeful and her son is going full speed ahead! I will keep you posted on his progress in the fall. Perhaps I will write about it or have her guest blog. Also, there are so many more kids with autism and educators are becoming even more familiar with these differences, so don’t worry until Senior year, then freak out!!

  11. Lindsey Petersen

    These are very real concerns. My son just turned 18 and is no longer in school. He just “is”. He does not want to participate in any programs and because he is an “adult” he can make that choice. He cannot live independently, so he is ours forever…unfortunately, he does not want to follow our rules. This situation never dawned on me when he was adopted all those years ago.

    Lindsey Petersen
    http://5kidswdisabilities.wordpress.com

  12. Michelle S

    Scary stuff. Perhaps you can talk to him about college being a goal, but probably not at 18. He can and does advance, just at a slower pace. Maybe college at 25 is more realistic? I don’t know. I do know I have this same thing tucked in the back of my head too. I think about it, often. It’s tough. Hang in there. If there is one thing I do know, you’ll figure it out. And do a great job with it.

  13. corrie

    I can understand where you are coming from. These things have crossed our minds too. And I believe Jonathan probably is higher function at 9 years old than Nigel was at the same age.

    I’m keeping you both in my prayers for wisdom and guidance through these next critical years.

    Maybe it won’t be in three years, but in five? Going to a community collage first?

    With the number of student diagnosed with autism, I believe the colleges are starting to prepare for them.

    I went to a college fair and quizzed a number of college about what support they have, and I was impressed. It might not be all there yet; however, they seemed to have more than they were given credit for having.

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  15. Tanya Savko Post author

    Thank you all so much for your encouragement, ideas, and suggestions. This gives me something to go on!

  16. Elise

    Hi, I am the parent of two aspie boys. The oldest is in college and the younger one is beginning the entire college application process this year. They both have tremendous executive functioning issues and need alot of different kinds of support than their peers. You know what, so what? They are bright and motivated and want to have a future of their choosing. If that means I have to provide them college coaches or life skills coaches to get them to the point that they need to be so be it. BTW they both had one-to-ones thru highschool.

    There are alot of things that you can do for Nigel over the next few years and even into his college education. Also remember there are alot of configurations of college, whether its part-time, community to a four-year school, live at home and providing support. There are also up and coming wonderful college based support programs for aspies throughout the country.
    I did not send my oldest away to school and i will not be sending my youngest. The social scene at college is confusing for an NT child never mind an aspie.
    I don’t want to blow my own horn, sort to speak, but read my blog http://asd2mom.spaces.live.com. It’s about my children’s adventures, especially college issues, transition issues, and IEP configurations dealing with executive functioning issues and highschool and college.

  17. tera

    the future scares me most of all, too. but the future was the present not too long ago, and soon the present will be the past…and you know what? we’re still here, still doing our best, and still doing okay. i have faith that our boys will adjust to be their own success, whatever that means for each of them.

  18. Petra

    My nephew has problems with college for various reasons and is doing the Open University in the UK. This is online and books with many concessions to those people with differing abilities that don’t affect their intelligence. It also has an attendance requirement for summer schools but that is lifted if the student can’t manage it. At the end of the course the student gets a degree equivalent to any UK university.

    I don’t know if it operates abroad, but it might.

  19. Petra

    Thanks for your reply. My nephew also has problems working alone, he plays computer games if he’s not checked on – but has constant support from his tutor – just a phone call away and online, and also sees him frequently. I don’t know if that extra info helps or not, I just hate to see someone with a good brain and no/small chances of employment not getting a chance to use it.

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