Leaving The Nest

The thing is, our children are getting older.  Many of them are no longer kids.  They’re young adults, ready to step out into the world.  They may or may not be leaving home yet, but they’re definitely wandering farther afield.  They’re graduating high school; starting college; looking for work; or learning to drive, take the city bus or ride their bike wherever they feel like going.  Some of them are dating.  They’re asserting their independence and letting mom and dad know that they’re old enough to make more of their own decisions.  Our sweet little babies are gone and in their places are sweet men and women who are beginning to face the world of adulthood.

They may or may not be ready.  We, as parents, definitely aren’t ready.  But like it or not, here we go.

I’m bringing this up because over the last few months, I’ve been pretty busy.  Not blogging (sorry!), but I’ve been talking to parents, K-12 educators, college educators, job developers, employers, adults with autism, government program administrators, service providers and other people who are trying to figure out how to help young adults with mild autism/Asperger’s successfully make the transition to adulthood.  Meetings like the ones I’m attending are happening all over the country – small meetings between a handful of agencies, large ones that determine statewide programs, and huge gatherings that draw people from across the nation, all working toward figuring out what we can teach our kids now that will help them succeed as adults later.

Do we know the answers yet?  No.  In some cases, we’re still trying to figure out the right questions to ask.  But we’re making progress.  We’re figuring out the reasons why college students with Asperger’s are more likely than neurotypical kids to flunk out of college their first time around.  We’re finding the most common reasons it takes our kids longer to learn the work skills that will keep them employed.  We’re identifying the potholes and challenges our kids face, and the characteristics and skills our kids will need to overcome them.

I’ve been gathering information so that I can recommend what Open Doors Now (the non-profit I run) should do to help our local young adults succeed in college and the workplace.  I am also the mother of a 17 year old son who has mild autism, is 6’2”, is getting ready to graduate high school, and is currently ineligible to receive any sort of state assistance.  Is part of the reason I’m pursuing this topic because of a mild (okay – moderate) sense of panic?  That could be true.  But that’s okay.  If autism research is like a mill, slowly but continually producing more and more knowledge about how to help our kids, panicked parents are one of the biggest forces that power that mill.

My third goal (after helping my son and our local Aspie population) is to pass on what I’m learning to you – the parents, educators and Aspies themselves who are looking for solutions now to help yourself or people you care about.  My posts over the next few weeks will be concentrating on the issues of transitioning to life after high school, but they won’t just be written for teachers and parents of teens.  Educators and parents of younger children, this stuff is for you, too.  Many of the skills our kids need to learn to make it as adults are ones we need to be teaching from pre-school age through high school; at home, at school and in the community.  Many of the attitudes our kids will need to have are ones you need to be modeling now.  Adults on the spectrum (and parents of adults on the spectrum), you can benefit from this information as well.  It’s never too late for any of us to do a little self-improvement, and if our efforts make our lives a little easier in the process, all the better.

In addition to posting on my blog, I’ve started sharing helpful links to what other people are coming up with on my Facebook page, ODN’s Facebook page, and my Pinterest account (Autism & Education, and Autism — Adults.)  Feel free to check them out.

One of the best things I’ve learned in all these meetings I’ve been attending is that my family is not facing this alone.  Yours isn’t either.  There are a lot of people, all over the world, who are working to help our kids learn to lead successful adult lives.  Together we are going to come up with solutions.

– Cassie

PS. If you think this post is helpful, pass it on to someone else.

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Don’t Dose Your Kid With Bleach

I never thought I’d have to say this, but please, don’t put bleach inside your kid in any way shape or form.  Even if someone with credentials a mile long tells you it’s a good thing, don’t do it.  Don’t give it to him/her orally or in any other manner, including via their bottom.  Bleach does not cure autism.  It can, however, kill your child.

Every couple of months the autism message boards light up with a new cure or treatment.  In the last few years I’ve seen plenty – various diets, supplements, oxygen therapy, brain stimulation, bath additives, injections, vitamins, stem cell therapy, herbs, neurofeedback and more.  Some of them benefit our kids; some of them don’t.  Some of them hurt our kids and a few can kill them.  The problem for parents is figuring out which is which.

As a parent of a child with autism, I understand our need to do whatever possible to make our children’s lives easier.  If I could trade my arms and legs in exchange for my child to have the ability to live independently, safely and happily as an adult, I’d do it in a heartbeat.  There’s nothing I want more than for all my children to become fully functioning and to have great lives long after I’m gone.  My biggest fear is that I will die before they are able to care for themselves.  I desperately want a cure for the bad parts of autism.  Unfortunately, that makes me a sitting duck.

Any time, any place where people suffer, someone will be selling a way to make the suffering go away.  Sometimes the sellers are really trying to help people; sometimes they’re just trying to make a buck.  And sometimes they are intentionally triggering every emotional response they can from people so they can drain them of every possible dollar, with absolutely no regard for the effectiveness or safety of the product they’re selling.  They use every hard-sell technique they can think of, mining our dreams and fears to promote their bat-sweat-monkey-spit cure.  They paint a picture of our child, free from the negative aspects of autism: a loving, caring child, who has friends, good grades, is healthy and who loves us very much.  What parent wouldn’t want that?  They promise us that future, as long as we are smart enough to see that their treatment is the right choice, even if other “experts” denounce it; as long as we have faith; if we care enough about our child to do what it takes to make him well; and as long as we pay and keep paying.  They play our heartstrings to get to our pockets, and if our children suffer in the process, so be it.  As long as they are getting rich, they don’t care.

Yeah, there’s a special place in hell for people like that.

I am in no way saying that every treatment that parents talk about on the internet is snake oil and I’m not suggesting that any of our parents are intentionally disregarding our children’s safety.  There is a lot of helpful treatment advice we give each other.  Most of our doctors and other practitioners are honestly trying to help our kids.  But when we go looking for ways to help our children, we can’t forget that among the thousands and millions of people out there who wish nothing but the best for us, there are a few evil ones who are just looking to line their pockets.

When it comes to our children’s health, we have to be defensive.  If something about a product, therapy or treatment raises red flags in your mind, do some more investigation before deciding to use it on your child.  Your research may ultimately convince you to try the treatment, and that’s fine.  But take the time to check facts.  A really skilled salesperson can calm quite a few of our fears, but here are some situations that really ought to make us suspicious:

  • A treatment that looks fabulous but that few people know about.  If the treatment is so effective, why isn’t it more popular?
  • The treatment is only available as a limited time offer or from only one or two sources.
  • The treatment is really expensive and insurance has investigated it and won’t cover it.
  • The reason everyone doesn’t know about the treatment is because there’s a conspiracy.
  • The studies that prove the treatment’s effectiveness were done by people who will benefit if you buy the product.
  • Government agencies or medical associations have published reports that say the treatment is hazardous.
  • The seller is claiming the product will cure many unrelated conditions, (like cancer, autism, heart difficulties, migraines and autoimmune diseases.)  The body is very complex and few disorders have the same root cause.
  • The seller is pressuring you to buy their product.
  • If one of the main selling points is “it’s all natural.”  Opium, digitalis, strychnine, uranium and thousands of other substances are all natural but can still kill you.  Natural doesn’t equal safe. 
  • You can’t find any research (other than what the seller provides) that says the product is safe and effective.
  • Your pharmacist says it’s a bad idea or hasn’t heard of it.
  • The seller claims there are a lot of benefits to the product but no adverse side effects.  If something is potent enough a treatment to affect the body, it will almost always cause side effects.  They may not be harmful or serious, but they’ll exist.
  • The seller doesn’t provide a way to tell if the treatment isn’t working, for instance, “If you don’t see results in six weeks, stop treatment.”  No product or treatment is 100% effective for everyone using it.
  • If “the science hasn’t caught up with us yet.”  If science hasn’t proven the product is safe and effective, maybe you should wait until it does.  If the treatment is effective, it will still be effective in a few years when it’s proven.  Do you really want your child used as a guinea pig?
  • The seller claims that if you don’t see results from the treatment, you should increase the amount or frequency of it.
  • It is making your kid more sick.  Some effective treatments do have side effects but as a general rule, if your child is getting worse – stop using the treatment.  If you have to taper off, fine, but stop.

These are just a few situations that should make you concerned.  Again, they don’t necessarily mean the treatment is dangerous or ineffective, but they should make you evaluate it very carefully before you start using it on your child. 

Listen to your gut and do your research.  We are all human and we’re all fallible.  We will make mistakes and sadly, some of those mistakes will harm our children.  We have to carefully weigh the possible benefits and harm in every decision we make, and sometimes we’re going to blow it.  I hate that.  I really, really hate that.  The best we can do is to be as careful as we can when making those decisions, and when we do blow it, forgive ourselves and get back to focusing on helping our children. 

As for the bleach cure, it’s called “Miracle Mineral Solution” or “MMS” and when it’s used as directed it produces an industrial strength bleach inside the body.  The people selling it use dubious claims and twist science to make it seem like it cures all kinds of things, including autism.  The FDA has a different opinion:  FDA Warns Consumers of Serious Harm from Drinking Miracle Mineral Solution (MMS).  You can decide who you want to believe.  Choose carefully.

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