What keeps parents of Autistic kids awake at night

Well, to be vague, a lot.

To be more specific, let's take it chronologically.

This is Teen Queen and Baby Queen at 1 year and again at 3 years, just a few months after the first MMR shots, see any differences?

When you have a baby, you have all these hopes and dreams for them. You imagine their lives, their paths, their futures; and for most parents, there will be some adjustments as they grow older and you get to know their true personalities. For parents of autistic kids, especially those who've had kids that changed radically almost overnight, it's like mourning a loss. You have to mourn and let go of the child you dreamed of having in order to accept and love and nurture the very different child you have. The prognosis is brutal. It's gotten better since the girls were diagnosed, there are more services, early childhood interventions, therapies and diets than there were when we started out. Unfortunately, the one thing that hasn't changed is how expensive they are and that most insurance won't cover specialized "experimental" treatments. So if you want to give your autistic child every benefit, you have two options: become as poor as possible so you qualify for government assistance, SSI and Medicaid, or you can spend every last dime on the therapies (speech, physical, occupational, ABA) hoping to give them a break, an advantage, with no guarantees that you'll get much more than basic functionality. Some parents I know with profoundly autistic kids had to face the prospect of placing them in a facility that could handle the severity of their symptoms. That is heartbreaking.

So after you've mourned and accepted that you are now the parent of an autistic child, the real work begins. You research. Everything. And you have to do it balancing hope with skepticism. There are so many scam treatments and "miracle" cures out there, and when you see your child suffering, you'll do anything, buy anything, if it might mean some relief. Once they start school (age 3 for PPCD in Texas), you get to start fighting the school district. You are their best advocate, and school districts love lazy uninvolved parents. I'm the "Oh shit" mom, as in "Oh shit, there she is again." You fight for lower child/adult ratios in the classroom (2:1 is prime, but some larger districts will push a 5:1), you fight for therapies, you fight for inclusion, you fight and fight and fight. Sometimes you luck out and get teachers and therapists that will fight with you, but you still have principals and superintendents, school boards and pencil pushers who resist spending on your special needs kid. Even though the State generally provides the school districts with twice the funds for Special Ed than general ed, they are reluctant to spend that money where it should go. TQ's 7th grade year was an eye-opener for me. I got lazy and they took advantage. Her teacher was going through a summer divorce and had a breakdown during the first week. They brought in a full-time substitute. I didn't know anything about it until I overheard a conversation in the grocery store. The sub not only wasn't a certified Special Ed teacher, she wasn't certified to teach. She basically baby sat TQ, playing on the computer while my daughter stimmed in the corner, 8-3, five days a week for three months. She didn't join her classmates for lunch, PE, Music, Art, all classes we agreed on the previous year. When I found out what was going on, an emergency ARD meeting was called to which I invited an Autism advocate and our family lawyer. The next semester, she had a qualified teacher, and all of the therapies that they had cut back were reinstated to make up for the lost ground. I have not slacked since then.

You worry about bullies; you worry about sexual predators; if you have a wanderer (TQ goes walkabout in the middle of the night), you worry about Amber Alerts. You worry about accidents because they have extremely high thresholds of pain. You worry about the horrible side effects of the medicines that are prescribed to keep their symptoms suppressed so they can participate in life. Both girls are screened for liver and kidney damage every three months because of the meds. Of course, research into medical marijuana is being blocked by Big Pharma, so there's no telling if that will ever be legally available. You worry more about sexual predators when they hit puberty. For you abortion absolutists, try this nightmare on for size. Your profoundly handicapped daughter who is limited in communication skills comes up pregnant. She can't identify the predator, and since she really doesn't understand her own period, how is she going to handle pregnancy and childbirth? I tried to get them on birth control, but because their cocktail of drugs has resulted in a weight problem and BC will increase the problem plus put more strain on their kidneys, the doctor is balking. So I worry. A lot.

Now you're running out of time, special ed kids can go to public schools in Texas until they age out at 21. After that, there are very few programs available. There are some assisted workshops, adult day care, some of your higher functioning can get basic jobs, the very few at the top of the spectrum may go on to college or trade school. But for profoundly autistic adults, there are very few choices and what's out there is beyond expensive. So you start estate planning, if you even have an estate left. It cost $3500 dollars for me to get custodial guardianship of TQ when she turned 18. One of three things happens, they are declared competent and able to make their own decisions, you pay the lawyers to retain custody if they aren't competent to handle their own affairs, or the State takes custody and makes the decisions. There was no fucking way the State was taking custody of my chick. Every year until one of us dies, I have to reapply for $250. BQ will be 18 this November and I get to start doing it for her too.

You worry about how you'll afford to care for two handicapped adults once you retire. You aren't planning retirement for you (and your spouse if you haven't divorced by now), you are planning retirement for your whole family. You start looking into nursing homes that will take you all if necessary. You start looking at guardians to back up the guardians you should already have in place. And you know how many people are willing to take in your autistic kids? Not many. You realize that once you die, your children are on their own, relying on the care of peripheral friends and family at best and the State at worst. You worry about their health, well-being, happiness, quality of life. The older and weaker you get, the stronger and bigger and faster they get. For some like TQ, the more violent their meltdowns get. You worry about people intervening. You worry about trigger-happy police who don't understand Autism being called to a "domestic disturbance" by neighbors who don't understand. I've been bruised and battered after one of Sarah's meltdowns, and as I go through the next decade from 50 to 60, I know those attacks will be more damaging to me. So I worry, when will I have to place her somewhere that can handle her meltdowns? Or do I give in and medicate her until she's a zombie? What should I do? What can I do?

So this is just a handful, a little peek behind the curtain. Say "hey" to some of my demons.