The Crystal Ball.

[I want to thank Claudia at The Story of C for reminding me of the importance of my son’s financial future and for inspiring this post with her post here.] 

What does the future hold for my child with ASD?  One of the myths that I heard when I began sharing my son’s diagnosis with people I knew was that, because my son had autism, wouldn’t he be super smart?  Or autistics are supposed to be geniuses!  He will be fine.

Really?  If that was true, why would autism be considered a disability?  Wouldn’t everyone want to be autistic?

The question about my son’s future is one of the scariest questions in the repertoire of questions I ask myself.  I do not like to look at this question or think about it or face it.  It simply used to make me feel physically ill inside.  And it was one of the first and scariest things I thought about when I received the diagnosis.

I’ve always been the lawyer who – when I received evidence against my case, either in trial or in pre-trial discovery – would groan, get depressed, and then all in the same day, hour, or minute, attack that evidence and rip it to shreds like a hungry pit bull.  Why oh why then, could I not do the same thing with the part of my son’s autism that scares me the most?  His future.

I saw some statistics last night.  They come from a 2007 study done by Easter Seals sponsored by an insurance company.  If you are interested in the report, it is located here.  The study was intended to elicit how many of us ASD parents have financial planning in place for our child’s future.  It turns out that almost none of us have done that planning even though we are four times more likely than the neurotypical parents to believe that our children will not attain financial independence, and we’re much more likely to worry about it.

I have felt guilty since before we got our diagnosis last year that I have not done anything other than set up and contribute to a 529 college savings account for my son.  I do not know what kind of help or services he may require when he becomes an adult or if he will need them at all.  But that does not stop me from worrying.

ASD children are vulnerable.  There are definitely people on the spectrum who have exceptional talents and have managed to become successful and financially independent.  This does not stop me from worrying about my own son.

He is vulnerable because he cannot read nonverbal social signals.  He has an innocent belief in words in the strictest sense so that a metaphor may escape him.  Maybe he will understand some of it all when he is older.  Some ASD children do not.  I don’t know now.  What I do recognize is that because of this “blindness”, he could be a victim of misrepresentation or deceit.  He could fall for all those advertisements for diet pill, weight loss, re-growing hair, making millions on real estate, or investing in a pyramid scheme and all of his savings (or our savings for him) could vanish.

I do not know the extent of his ability to get or hold a job.  Even at his tender age, I know he has above-average intellect.  But his short attention span, his over-focus on certain things and his obliviousness to others, his inability to take direction unless asked multiple times, are not characteristics to put on a resume.  Take those deficits and add them to someone who is socially awkward at best and you do not have a recipe for success in the workplace.

I suspect he will have some close friends and a career that does not require a lot of social interaction.  This is one of my less lofty hopes for him.  Nevertheless, I think it is my responsibility to prepare for the contingent in which my son does not have the ability to provide for himself.  It will provide me with some peace of mind.

None of us as parents, whether on the spectrum or not, can predict what will happen when our children grow up.  But the odds for success in work, love and life are greater for those who are not burdened with a disability.  That’s why we all feel good when we see a success story for a disabled person.  I love watching and hearing stories about Temple Grandin, Jason McElwain, and James Durbin for instance.  These are exciting and amazing people who happen to have autism.  But they are rare.  We all know that which is why there is a fascination.

I can’t look into my crystal ball and see what my son will be like at age 8, 11, 16 or 21 but I do have to plan now for the worst case scenario.  I have to prepare myself if he is not the concert pianist, the basketball player, the surgeon or the author.  I have to prepare myself if he is unable to reach the independence that a driver’s license could provide if he cannot handle the sensory overload.

I want my son to have the best of everything, to be safe and secure, or at the very least, to have a minimal supplemental, spendthrift income to help him when he needs it.  It might be hard to face the scary stuff – but once you look scary in the face, pull it apart, and kick it a few times, it’s not scary anymore.  I will always face down scary for my little boy.  I will do it out of love.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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26 Responses to The Crystal Ball.

  1. Lizbeth says:

    I suspect he’ll be whatever he wants to be, with your support and guidance. I have the same fear–for all my children. I stay up late wondering what things will hold for A. but there are times I worry more about his sisters as they can be flighty and more interested in Barbie and nail polish! Sure, he’s going to have problems but he’ll work through them with all of us doing what we can and he’ll be a better person because of it. That’s my goal for him and I’ll die trying to see it happen.

    OK, that sound a bit much but our kids will succeed because we’re behind them and I have no doubt T will be exactly what he wants to be…and happy to boot!

    • solodialogue says:

      It’s a hard thing to think about and to read about. Thank you Lizabeth. I have a feeling that not too many people will want to comment today because it is a hard subject. You are a fabulous mom! Thank you for your positive vibes. You always make me smile. 🙂

  2. C... says:

    Thank you for linking back to my site. I am so honored that I can be of some help in the world of autism.

    Your paragraph about falling for false or misleading advertising strikes a chord with me. My son loves informercials. He watches them like they are gospel and he’ll tell me we need what they are selling. It’s so cute sometimes but then I realize … Lord he’ll be come a hoarder one day buying off the internet and never leave the house.

    That’s a scary thought. I want him to have a full and active life, not be a total tech head without any social skills … wait I think I just described myself sort of 🙂

    • solodialogue says:

      Lol! Thank you Claudia for being my inspiration and my kick in the pants to get things taken care of for my son. My son went through an infomercial phase also. Every product Billy Mays was selling was something he wanted! So weird – that was when he was 2.5!! I’m sure it could probably re-appear any day now – ugh!! 😉

  3. Ugh. I feel what you are saying about planning for the future. It is a difficult task for *any* parent, much less those parents who must plan for the worst.

    My mother gave me a copy of the autism feature from the Sunday Parade magazine a few weeks back ( http://www.parade.com/health/autism/featured/autisms-lost-generation.html ). I found it depressing and even a bit terrifying. The shortage of meaningful adult services for people with autism and related disorders is, for a developed country like the United States, downright embarrassing.

    Like you, I worry for my daughter and what options will be available to her when she is ready. Will she overcome her speech disorder and sensory “quirks” to a point that she will be able to find meaningful and fulfilling work? Or will she end up in a back room doing piece work because she just can’t express the intelligence that I know is inside her?

    All we can do is plan ahead and hope for the best. That, help our children get to the best they can be — whatever that means!

  4. This is where I have to quit being an ostrich. We’ve been struggling pay check to pay check for the last (almost) two years, so financial planning has just not been a possibility. No savings, no college funds, nothing. But we have to get this stuff sorted soon, because we don’t currently have a will, and it is on my to-do list before we move. Would much prefer burying my head in the sand though!

    • solodialogue says:

      I have buried my head in the sand for nearly 5 years now. As I have said to others here, a belief that there is no money to sock away is no reason not to learn how to plan. The scary and icky parts are all the unknown. Remember how you felt when you were given the diagnosis? You pushed with everything you had (and you continue pushing) to get Pudding all the care and services she needs. I know you won’t stop at her childhood. Planning need be no more than information gathering now. The money will figure itself out in the future. The framework for the future starts with information. You can build from there.

  5. Ugh. I want to plug my ears to this, but you’re right, it’s important.

    • solodialogue says:

      It’s an icky subject. Hopefully, someday, when you are ready, you will come back and look at it again. Gathering free information never hurts. It can help. 🙂

  6. Tam says:

    My brother’s boy (not on the spectrum) is totally into infomercials, too. He used to quote the commercials back to us and explain why we needed things. That’s why commercials work so well for children’s products, because kids lack the life experience to know to question things.

    But for what it’s worth, most of the adults I know who fall for mlm scams and other such things are no where near the spectrum. Those scams depend on playing on people’s emotions, but they usually don’t stand up to a straight analytical review… which is what most spectrumites end up doing once they’re old enough to realize that other people lie a lot.

    My parents taught me not to fall for that kind of crap, but now in their old age they fall for every single MLM and miracle cure that comes along. It’s baffling. It’s like they suddenly lost their ability to use their brains at all (as far as I can tell they are not going senile in other areas).

    • Tam says:

      Erm, and by “old age” I didn’t really mean old. They’re not that old… just that there was a point around 40 or so where they both suddenly lost it and started falling for every scam that came around… and it’s not showing any signs of stopping no matter how many times they get burned by these idiots.

    • solodialogue says:

      Good point about the analytical review by those on the spectrum of scammers. Scammers can prey on vulnerability – and to a degree can be smart. So, if the scam seems legitimate, and my son can’t read the nonverbal cues – he still remains vulnerable. Of course, none of us can predict the future (thus the crystal ball). There are just too many variables. I’m not sure where my son will fall in the future in terms of his self-sufficiency. He is still a child and children are vulnerable – some more so than others. I can’t wait that long and gamble. For my own peace of mind, I must plan. Until I do, I will continue to have that bad feeling in the pit of my stomach when the subject arises.

  7. Flannery says:

    *sigh*

    This is one of those things I try not to think about too often because it makes me stressed and depressed. We have a hard time making ends meet now, especially with the cost of a child on the spectrum. Trying to stockpile money for him as an adult just seems so overwhelming….

    • solodialogue says:

      This is a bit how I felt when I first read Claudia’s post. Ugh- I don’t want to think about it. Her post stuck with me until I did this post. You may all kick me in the appropriate spots (perhaps I should put up a target of me for today (but I won’t – I know some people who might like it too much)! Even if you do not believe that you have the funds to do any “setting aside” right now, look around. There are attorneys who do estate planning who give free seminars and consults in their offices. Or you can pay for the consult and price shop the attorneys. Ask for free consults because you have a special needs child that you are concerned about – surprisingly, there are many attorneys who may do that for you. Also, if you have a law school in the town in which you live, they often have clinics where you can get advice or direction on how to proceed.

      You can get free information from the insurance company that did the study who I refer to in the post itself. Information can be found for free. You can use the information to keep in your brain’s storage cabinet. If you get a little extra in a tax refund or a bonus or as Christmas money, it can be put away. It doesn’t have to be all at once and I swear to you that just knowing will help you find the way. Now, you may proceed to cuss me out privately to your computer. 😉 ❤

  8. Teresa says:

    After consideration today I decided to share our family’s situation with you all. My young adult son, is nonverbal and has other special needs. He also may well be older than some of you… You may also be like I was when Matthew was young and not ready to confront this future planning yet. If you are, don’t be plagued by guild, it is very hard to do, even in the best of times. I also pray that your children grow through your perseverance and continue efforts into productive members of society.

    Through your posts it appears many of the readers here have young children who may not be considered disabled by the govt as adults. Fortunately, lots of adults with Aspergers live very good, happy independent lives. In that case, planning for college, future, etc. is critical just as you point out. However, if the person is disabled one must also consider what services can/will be provided by the state and unfortunately, in many cases the disabled person must be impoverished to get them. Our son is in this situation, and while I haven’t dealt with all of it, we are very aware that if Matthew inherits anything the state will take it (and even ask for back pay) before he will be eligible again for state provided services.

    For example: What happened to the adult siblings of a woman from our church was a real eye opener for us. There were two brothers who were considered disabled. They were able to live “on their own” together as long as they had house cleaning, minor attendant care (food preparation and the like), and a day program where they “worked”. But when mom died unexpectedly shortly after dad without a will they, along with the siblings, inherited the home and a fair amount. The parents plan was that the boys would continue to live in the house but when they shared the inheritance suddenly they were not considered poor in the eyes of the state. They no longer qualified for SSI; all their services were stopped and the state looked at collecting back funds for several years. It was a huge surprise and challenge for the family, a nightmare, to say the least.

    Of course, the problem is the disability funds that an adult receives, while important and helpful, rarely cover all their true needs. So parents, like my husband and I, have to work around the system and do estate planning where Matthew specifically does not inherit anything but does have ability to get extra money for needs through a specially designed trust fund. We realized that Matthew’s problems were severe enough that he would not go on to college and spent all funds in his accounts prior to his becoming an adult. As a result he qualifies for SSI, respite, habilitation, etc. As long as he lives with us all his needs are met. Now, some people would say we are cheating the system by doing this. We look at it thinking of what will happen when we both are gone. Sure he could inherit a significant amount BUT how long would it cover his needs? His gluten/lactose free diet alone would use the entire SSI check… and then what?

    I share it with you just as something of which to be aware. Those with young children need to work and plan for a full successful life. Continue to aim high.

    • solodialogue says:

      I am humbled daily by the extremely smart and experienced people who come here (of all places) to read. Each and every person who has commented here has something beautiful and meaningful to offer. Teresa, you are a wonderful person to share this kind of information with all of us. I so want to plan for my son’s future and I am familiar with the state’s procedures of taking from those who can least afford or contest it. It happens to a lot of my clients. But when we are so close to the issue, it is hard to put 2 and 2 together. Your comment has done that for me. I know I cannot put off taking care of my little boy and so I have arranged to meet with someone to set up a trust that will help him when he reaches adulthood.

      Teresa, you are a wise woman. You and your husband have provided well for Matthew. He is a lucky young man. Thank you so much for sharing this with all of us. I don’t believe it is disheartening at all. Information like this may have a tendency to turn us off or scare us. But I think it will stick on our insides until we each take our own actions to protect our children. I think it is amazingly important information for everyone. Thank you. ❤

  9. Danica says:

    My husband & I have talked long into the night on many occasions. Like so many other people in this unstable economy we struggle just to make ends meet and to put food on the table. Let alone keep up on therapies, equipment and such for PA. We do our best and just pray it’s enough in the end.
    We are very hopeful for PA’s future whatever it may hold. We will love and support both our daughters for as long as they need, or as long as I am still around. I hope that in a few years we will be able to save for their futures but right now we are just doing the best we can.

  10. solodialogue says:

    I know you have a very difficult future compared to the rest of us. To consult someone who can help without charge to plan or to steer you in a direction to plan for the girls’ future can not ever be the wrong thing to do.

    Everyone thinks money. You need a device to put the money into. Learning what devices are available means you will know what to choose to put the money in. The money can come later.

  11. Big Daddy says:

    We plan and prepare but try not to worry and fret.

  12. Rachel says:

    –These are exciting and amazing people who happen to have autism. But they are rare. We all know that which is why there is a fascination.–

    Yes, the superstars are rare. And, unfortunately, the superstars are all that people see of successful autistic people. There are lots of us who are living and thriving, and we’ve done it for generations — without massive interventions of any kind. Really. My father was autistic, and he was a dentist. He wasn’t brilliant. He wasn’t a savant. He was just a detail oriented guy who didn’t have anyone to depend on but himself.

    This is the biggest problem with the way that autism is portrayed. You see Temple Grandin, and you see kids ending up in group homes, and you don’t see much at all in between. There are so many of us out here, living ordinary lives, falling in love, going to school, watching TV, dreaming our dreams — all the things that other people do.

    Your son has some challenges now, but no five year old in the world manifests any abilities whatsoever that will be transferable to the workforce. When my daughter was 5, she couldn’t even sit still. By seven, you couldn’t pry her out of a chair if she had a book in her hand. Now, she’s 18 and writes at the level of a 30-year-old. I couldn’t have imagined the person she would become.

    So please, smash that crystal ball, because as you say, you can’t know the future. Kids who were nonverbal for years are now going to college. Look at Eric Duquette. His parents were told he was a lost cause, that he’d end up in an institution. Last June, he was the salutatorian of his mainstream high school in Rhode Island, and when he gave his speech at graduation, the place erupted in cheers.

    Of course, it pays to plan for your son’s future. That’s just responsible parenting. After all, any child can become disabled at any time. We’re all vulnerable. If you have the means, set things up as best you can. No arguments there! I’ve done the same for my daughter, and she’s more able-bodied than I am. 🙂

    Re: getting scammed…I completely agree with Tam. I see through crap coming at me a mile away. I can’t be charmed or taken for a ride. I wrote a post a while ago about how I’ve survived being honest in a world of guile. You might find it helpful:

    http://www.journeyswithautism.com/?s=being+honest+in+a+world+of+guile

    Cheers,
    Rachel

    • solodialogue says:

      Rachel, duly smashed! I know my son will change as he ages but it is hard to see right now. I did go to your link and left a comment that disappeared (maybe because it is an older post?) Thank you for it because I really am amazed by how much you, Laura, and Tam show me how talented, smart and wonderful a little ASD person can grow up to be. You are all so kind to share your insights. I hope it will help me be a better parent to my son. It definitely helps me have broader, more well-balanced understanding that I cannot find anywhere else.

  13. Fi -From the Madhouse- says:

    Oh I hear you!
    I will always worry about my boys futures….how can you not?
    I think for me, I’ve had to stop myself from letting my head go there too often and just force myself to focus on the here and now and keep doing the best that I can 🙂

    It’s never-ending though I know *sigh*

  14. eof737 says:

    You are doing the best by planning for him in a sensible way and the rest will follow. Don’t despair at least you are looking at it.
    Eliz

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