How the State Government Shutdown Might Affect Me

I don't get that involved in politics, mainly because I don't feel confident that I really understand everything that is going on.  I pay attention and try to learn, though.

I thought, naively perhaps, that the state government shutdown wouldn't affect me much.  This week I found out I was wrong.

You see, I have three children, two of whom have special needs.  Specifically, my identical twin sons have Fragile X Syndrome and autism.  Fragile X, if you haven't heard of it, is the most common inherited cause of mental impairment, and the most common known genetic cause of autism.  They were diagnosed at 14 months, and are now 6 years old.  They have fairly severe mental disabilities; they are just beginning to talk but are very tough to understand.  We have yet to successfully toilet train them, and we've been working on that for over a year.  Their fine motor skills are limited in that they can't work utensils.  Although they can pick up finger foods, if it's something like spaghetti or yogurt or applesauce, I have to spoon feed them.  They can both hold a pencil or crayon fairly well and can scribble, but they aren't even close to writing their names.

Probably the most limiting aspect of their disability though, is the anxiety and behavior problems.  Fragile X causes extreme anxiety, which then manifests in behavior difficulties.  The boys can't be around other little kids without getting so nervous that they lash out aggressively, pinching and sometimes biting.  After a little time passes and they get used to the kids and the environment and the surroundings, they get more comfortable and can mingle with their peers and keep their hands to themselves, but it takes awhile.

As you might imagine, this makes it hard to make friends.  Other little 6 year olds tend to remain pretty suspicious of kids who pinched them.

One type of therapy that has been proven to help kids with these types of disabilities is ABA (applied behavior analysis).  My sons have been receiving ABA therapy for three years now and have made tremendous progress.  When they started ABA, they were 3-year-olds who behaved more like 1-year-olds, with virtually no communication skills whatsoever.  Now they are both talking up a storm, saying new words and even phrases every day, and one of them is even beginning to use a spoon to feed himself.  It's messy, but he's doing it!

Anyway, due to our sons' disabilities we apply for every year and receive TEFRA, which is medical assistance for Minnesota families who have too much income to qualify for other Minnesota Health Care programs (which is pretty much anybody who has a job).  It helps to cover things our insurance does not, and helps with the multiple co-pays we have weekly.

One of the things TEFRA helps pay for is our ABA therapy.  It's been instrumental in helping the boys be independent.  Chances are, they will never been completely independent adults, able to live alone and care for themselves, but it's crucial they receive this help now, while they are so young and impressionable.  The more we can help them now, the less help they will need as adults. 

I found out this past week that the company that provides our ABA therapy is not sure whether the state workers who coordinate the disbursement of TEFRA will be considered "essential."  Which means they may not get paid, and in turn, our daily therapy sessions could end, in a little over a week.  This will be devastating to my sons.

For one thing, the boys thrive on routine.  Breaks in our routine cause anxiety which leads to aggression and meltdowns.  When just one or two therapy sessions a week are cancelled for whatever reason, the boys notice and are affected.  To have all therapy come to a screeching halt could be really overwhelming.

For another thing, I would hate to see them regress back to the screaming, hyperactive, obsessive, entirely helpless boys they were before we started ABA.  I will work hard with them to retain the skills they've learned.  But I'm no therapist.

Looks like I'll have to figure out who to contact up at the Capitol.